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The physician's professional role in end-of-life decision-making: Voices of racially and ethnically diverse physicians
Abstract
Previous studies have shown racial/ethnic differences in preferences for end-of-life (EOL) care. We aimed to describe values and beliefs guiding physicians' EOL decision-making and explore the relationship between physicians' race/ethnicity and their decision-making.
Seven focus groups (3 Caucasian, 2 African American, 2 Hispanic) with internists and subspecialists (n=26) were conducted. Investigators independently analyzed transcripts, assigned codes, compared findings, reconciled differences, and developed themes.
Four themes appeared to transcend physicians' race/ethnicity: (1) strong support for the physician's role; (2) responding to "unreasonable" requests; (3) organizational factors; and (4) physician training and comfort with discussing EOL care. Five themes physicians seemed to manage differently based on race/ethnicity: (1) preventing and reducing the burden of surrogate decision-making; (2) responding to requests for "doing everything;" (3) influence of physician-patient racial/ethnic concordance/discordance; (4) cultural differences concerning truth-telling; and (5) spirituality and religious beliefs.
Physicians in our multi-racial/ethnic sample emphasized their commitment to their professional role in EOL decision-making. Implicitly invoking the professional virtue of self-effacement, they were able to identify racially/ethnically common and diverse ethical challenges of EOL decision-making.
Physicians should use professional virtues to tailor the EOL decision-making process in response to patients' race/ethnicity, based on patients' preferences.
... Nineteen papers addressed these outcomes and were included in the analysis [41-43, 45, 46, 48, 50-52, 54, 55, 58, 60, 61, 63, 67, 69-72]. The majority (eleven) of these papers were from the USA (39,40,45,47,49,51,56,59,61,63,67], with six based in Asian countries (42,43,52,58,69,70]; two in New Zealand (53,72); and a single UK-based study [71]. Individual studies varied widely in the ethnically diverse groups they assessed. ...
... Of the nineteen papers addressing the secondary outcome measure, eight examined clinician-based factors affecting ACP presence (40,43,45,47,49,52,67,71]. Qualitative analysis identified three key themes: poor clinician confidence around cultural values and ideals; exacerbation of institutional constraints; and pre-conceived ideas of patients' wishes. ...
... Four papers indicated that clinician confidence in initiating and delivering ACP conversations was key [43,48,52,71]. Uncertainty around prognosis and the timing of ACP conversations was a source of hesitation; particularly for clinicians with perceived poor understanding of diverse cultural values and ideals around death and dying, who felt ill-equipped to sensitively deliver ACP [71]. ...
Background:
Advance care planning (ACP) is the process supporting individuals with life-limiting illness to make informed decisions about their future healthcare. Ethnic disparities in ACP have been widely highlighted, but interpretation is challenging due to methodological heterogeneity. This review aims to examine differences in the presence of documented ACP in individuals' care records for people with advanced disease by ethnic group, and identify patient and clinician related factors contributing to this.
Methods:
Mixed-methods systematic review. Keyword searches on six electronic databases were conducted (01/2000-04/2022). The primary outcome measure was statistically significant differences in the presence of ACP in patients' care records by ethnicity: quantitative data was summarised and tabulated. The secondary outcome measures were patient and clinician-based factors affecting ACP. Data was analysed qualitatively through thematic analysis; themes were developed and presented in a narrative synthesis. Feedback on themes was gained from Patient and Public Involvement (PPI) representatives. Study quality was assessed through Joanna Briggs Institute Critical Appraisal tools and Gough's Weight of Evidence.
Results:
N=35 papers were included in total; all had Medium/High Weight of Evidence. Fifteen papers (comparing two or more ethnic groups) addressed the primary outcome measure. Twelve of the fifteen papers reported White patients had statistically higher rates of formally documented ACP in their care records than patients from other ethnic groups. There were no significant differences in the presence of informal ACP between ethnic groups. Nineteen papers addressed the secondary outcome measure; thirteen discussed patient-based factors impacting ACP presence with four key themes: poor awareness and understanding of ACP; financial constraints; faith and religion; and family involvement. Eight papers discussed clinician-based factors with three key themes: poor clinician confidence around cultural values and ideals; exacerbation of institutional constraints; and pre-conceived ideas of patients' wishes.
Conclusions:
This review found differences in the presence of legal ACP across ethnic groups despite similar presence of informal end of life conversations. Factors including low clinician confidence to deliver culturally sensitive, individualised conversations around ACP, and patients reasons for not wishing to engage in ACP (including, faith, religion or family preferences) may begin to explain some documented differences.
Trial registration:
PROSPERO-CRD42022315252.
... A trusting relationship with the patient was considered a facilitator, and, for some GPs, a prerequisite to R/S discussions, 36,59,72,76 but desiring such a relationship was also a facilitating factor. 51,57,72 Discussion of R/S was seen as part of providing holistic care. 57,60,78 Sharing a concordance of beliefs, whether regarding faith or importance of spirituality, was found to be an important facilitator. ...
... It allowed spiritual interventions that would not otherwise occur, possibly because of the improved communication that common presuppositions allowed. 58,72,76 Discussion of R/S was described as mutually enriching. 78 In the EOL context, GPs found that experience in palliative care and good symptom control for the patient facilitated R/S discussion, and it was easier when the patient accepted their diagnosis. ...
... 27,37,46,48,52,53,66,76 Results were mixed regarding impact of age, 38,41,53,54,70 years in medical practice 37-39, 41,43,48,54,57,62 and race. 39,48,66,72 African-American physicians reported that concordant race was a factor, reflecting concordant spirituality. 72 Physicians who worked in primary care discussed R/S more often than specialists, except for psychiatrists and palliative care physicians. ...
Discussion of religion and/or spirituality in the medical consultation is desired by patients and known to be beneficial. However, it is infrequent. We aimed to identify why this is so.
We set out to answer the following research questions: Do doctors report that they ask their patients about religion and/or spirituality and how do they do it? According to doctors, how often do patients raise the issue of religion and/or spirituality in consultation and how do doctors respond when they do? What are the known facilitators and barriers to doctors asking their patients about religion and/or spirituality?
A mixed qualitative/quantitative review was conducted to identify studies exploring the physician's perspective on discussion of religion and/or spirituality in the medical consultation.
We searched nine databases from inception to January 2015 for original research papers reporting doctors' views on discussion of religion and/or spirituality in medical consultations. Papers were assessed for quality using QualSyst and results were reported using a measurement tool to assess systematic review guidelines.
Overall, 61 eligible papers were identified, comprising over 20,044 physician reports. Religion and spirituality are discussed infrequently by physicians although frequency increases with terminal illness. Many physicians prefer chaplain referral to discussing religion and/or spirituality with patients themselves. Such discussions are facilitated by prior training and increased physician religiosity and spirituality. Insufficient time and training were the most frequently reported barriers.
This review found that physician enquiry into the religion and/or spirituality of patients is inconsistent in frequency and nature and that in order to meet patient needs, barriers to discussion need to be overcome.
© The Author(s) 2015.
... This is seen in a study of racial disparities in physicians' approach to end-of-life conversations. 36 While white doctors insisted: "These issues are colorblind" and reported the "need to stay 'indifferent'" to patients' and families' religious beliefs, African American doctors, in sharp contrast, insisted on the critical importance of identifying with African American patient's/families' religious beliefs and supportively engaging their hopes. African American doctors maintained that this approach allows them to establish the trust necessary to engage more fully with African American patient/family apprehensions and concerns surrounding end-of-life healthcare decisions. ...
... As a result, African American doctors were able to be both more supportive (saying things like, "I never try to squash anyone's hopes"), and also "quite frank" and productively carefrontational, if you will, (saying things to the family like, "God doesn't do miracles everyday"), all within a framework of respect for the family's perspective that it is God who is ultimately in control (saying things like: "Now it's up to God"). 36 This nuanced combination of 1) embracing hope, 2) naming difficult realities including uncertainty, and 3) embracing a faith that transcends unwanted outcomes, is reminiscent of the kind of prayer I found myself praying in these contexts and therefore the kind of spiritual intervention that I am advocating for doctors to offer via third-party specialists. ...
Background: Racial and ethnic disparities in end-of-life healthcare can be reduced by showing physicians how to best respond to a documented underlying cause: African American families’ hopes for a miracle via divine intervention influence their end-of-life medical decisions, like, for example, making them not want to withdraw ventilatory support in cases of poor neurologic prognosis because they are still hoping for God to intervene.
Methods: Autoethnographic research probing the author’s Spiritual Care experience in this context yields a nuanced, 90-second point-of-care spiritual intervention physicians can use to address the religious aspect of African American families who base end-of-life medical decisions on their hopes for a miracle via divine intervention. Autoethnographic analysis is framed by physician-author, Dr. Jessica Zitter’s documented journey of grappling with this context. The evolution of Dr. Zitter’s responses to miracle-hoping African American families provides a framework for applying autoethnographic analysis to a critical appropriation of the Johns Hopkins “AMEN” communication protocol for families hoping for a miracle.
Results: The common instinct of white physicians to remain neutral, holding miracle-hoping African American families at arm’s length, rather than supportively engaging their hopes, is shown to be an intellectual ruse for emotional avoidance. A novel, counterintuitive spiritual intervention for the religious aspect of miracle-hoping African American families is integrated into an existing physician communication protocol for responding to families hoping for a miracle with recommendations for utilization of existing communication technology when necessary.
Conclusion: Properly addressing the religious dimension of African American families hoping for a miracle may help physicians to increase their therapeutic connection with families, decrease their own stress/burnout levels, and eliminate racial and ethnic disparities in end-of-life healthcare.
... Consequently, it is not possible nor is it practical to expect that HCPs have in-depth understandings of all Islamic and Muslim practices, especially given the cultural variations amongst different Muslim groups [39]. As such, a generalized 'cookbook' approach detailing traditional beliefs and practices of different cultures may actually create more harm for patients as not all beliefs and practices will be applicable due to differences that exist within cultural groups [39,40]. Hence, an open and flexible approach, that acknowledges and respects individuality within the spectrum of beliefs and practices of various cultural and spiritual groups, is an increasingly important feature of culturally-sensitive EoL care [39]. ...
... Hence, an open and flexible approach, that acknowledges and respects individuality within the spectrum of beliefs and practices of various cultural and spiritual groups, is an increasingly important feature of culturally-sensitive EoL care [39]. In addition to taking a person-centred approach to cultural and spiritual issues [40], it is important for HCPs not become desensitized to the profound nature of death and dying and the ethical and medical decision-making issues that are prevalent across cultural and spiritual groups [41]. ...
Background
Multiple factors influence the end-of-life (EoL) care and experience of poor quality services by culturally- and spiritually-diverse groups. Access to EoL services e.g. health and social supports at home or in hospices is difficult for ethnic minorities compared to white European groups. A tool is required to empower patients and families to access culturally-safe care. This review was undertaken by the Canadian Virtual Hospice as a foundation for this tool.
Methods
To explore attitudes, behaviours and patterns to utilization of EoL care by culturally and spiritually diverse groups and identify gaps in EoL care practice and delivery methods, a scoping review and thematic analysis of article content was conducted. Fourteen electronic databases and websites were searched between June–August 2014 to identify English-language peer-reviewed publications and grey literature (including reports and other online resources) published between 2004–2014.
Results
The search identified barriers and enablers at the systems, community and personal/family levels. Primary barriers include: cultural differences between healthcare providers; persons approaching EoL and family members; under-utilization of culturally-sensitive models designed to improve EoL care; language barriers; lack of awareness of cultural and religious diversity issues; exclusion of families in the decision-making process; personal racial and religious discrimination; and lack of culturally-tailored EoL information to facilitate decision-making.
Conclusions
This review highlights that most research has focused on decision-making. There were fewer studies exploring different cultural and spiritual experiences at the EoL and interventions to improve EoL care. Interventions evaluated were largely educational in nature rather than service oriented.
... Consequently, it is not possible nor is it practical to expect that HCPs have in-depth understandings of all Islamic and Muslim practices, especially given the cultural variations amongst different Muslim groups [39]. As such, a generalized 'cookbook' approach detailing traditional beliefs and practices of different cultures may actually create more harm for patients as not all beliefs and practices will be applicable due to differences that exist within cultural groups [39,40]. Hence, an open and flexible approach, that acknowledges and respects individuality within the spectrum of beliefs and practices of various cultural and spiritual groups, is an increasingly important feature of culturally-sensitive EoL care [39]. ...
... Hence, an open and flexible approach, that acknowledges and respects individuality within the spectrum of beliefs and practices of various cultural and spiritual groups, is an increasingly important feature of culturally-sensitive EoL care [39]. In addition to taking a person-centred approach to cultural and spiritual issues [40], it is important for HCPs not become desensitized to the profound nature of death and dying and the ethical and medical decision-making issues that are prevalent across cultural and spiritual groups [41]. ...
Background: Multiple factors influence the end-of-life (EoL) care and experience of poor quality services by culturally-and spiritually-diverse groups. Access to EoL services e.g. health and social supports at home or in hospices is difficult for ethnic minorities compared to white European groups. A tool is required to empower patients and families to access culturally-safe care. This review was undertaken by the Canadian Virtual Hospice as a foundation for this tool.
... Surrogates will then be able to report the already-made decision of the patient, a role that is perceived as less burdensome [32,33]. Physicians could also facilitate discussions with potential surrogates and clarify to patients who their legal surrogates are [34]. ...
... It may suffice to remind such patients of the importance of decisionmaking and the major risk of not doing so, receiving life-sustaining treatment by default, which the patient may or may not want. The physician can also inform such patients that not making EOL decisions can result in preventable stress for surrogate decision makers [32][33][34][35]. Avoiders may not welcome such discussions and they may even be unfruitful and risk harm to the patient-physician relationship. ...
To describe self-reported decision-making styles and associated pathways through end-of-life (EOL) decision-making for African-American, Caucasian, and Hispanic seriously ill male Veterans, and to examine potential relationships of race/ethnicity on these styles.
Forty-four African American, White, and Hispanic male Veterans with advanced serious illnesses participated in 8 racially/ethnically homogenous focus groups. Transcripts were qualitatively analyzed to identify major themes, with particular attention to themes that might be unique to each of the racial/ethnic groups.
Patients described two main decision-making styles, deciding for oneself and letting others decide, leading to five variants that we labeled Autonomists, Altruists, Authorizers, Absolute Trusters, and Avoiders. These variants, with exception of avoiders (not found among White patients), were found across all racial/ethnic groups. The variants suggested different 'implementation strategies', i.e., how clear patients made decisions and whether or not they then effectively communicated them.
These identified decision-making styles and variants generate strategies for clinicians to better address individualized advance care planning.
Physicians should elicit seriously ill patients' decision-making styles and consider potential implementation strategies these styles may generate, thus tailoring individualized recommendations to assist patients in their advance care planning. Patient-centered EOL decision-making can ensure that patient preferences are upheld.
... Life-sustaining treatment by default is fraught with potential ethical confl ict that can take a considerable and unwelcome biopsychosocial toll on patients, their surrogates, and clinicians. [1][2][3][4][5] As a consequence, life-sustaining treatment by default can distort an organization's culture by promoting attitudes of indifference toward patients receiving lifesustaining interventions for whom such interventions make little clinical sense, or by contributing to increased burnout in nursing staff caring for such patients. End-of-life decision making for patients who have not made or communicated their decisions can place an inordinate psychosocial and moral burden on surrogates, who may be struggling with a role they did not want or were unprepared to assume. ...
... Surrogates sometimes manage the burden by asking that everything be done to sustain life, resulting in life-sustaining treatment by default. 5,7 Additionally, studies have shown that even when surrogates think they know what a patient would have wanted, patients would actually have chosen differently. [18][19][20][21][22][23][24] In particular, surrogates who are chosen by patients specifi cally because they are personally close may have a hard time of letting go of their relationship; choosing against life-sustaining treatment may result in a patient's death, thereby severing the relationship. ...
Many physicians will at some point care for patients who will receive life-sustaining treatment by default, because there are no instructions available from the patient as to what kind of care is preferred, and because surrogates are likely to ask for everything to be done when they do not know a patient's preferences. We use the methods of ethics informed by qualitative focus group research to identify 5 pathways to life-sustaining treatment by default originating with the patient's preferred decision-making style: deciding for oneself or letting others decide. We emphasize preventing the ethically unwelcome outcome of life-sustaining treatment by default by increasing the frequency with which patients make clear decisions or clearly express their values and goals that they then communicate to physicians or surrogates.
... There is a high prevalence of deaths occurring in non-palliative care units in acute hospital settings such as cardiology, geriatrics, and intensive care; yet, non-palliative care professionals (NPCPs) including physicians, nurses, and social workers often perceive themselves as inadequate in engaging with and caring for critically and terminally ill patients and their families (Holley et al. 2003;Lien Foundation 2014). With the onus on NPCPs in their respective nonpalliative settings to treat disease and prolong life, poor patient prognosis and death often trigger distress and dilemmas within them and cast doubt upon their clinical competencies (Braun et al. 2010;Langley et al. 2015;Zwicker and Lutz 2018). In the context of Singapore and neighboring Asian regions, this phenomenon is further exacerbated by societal death taboos, lack of involvement in one's own death preparation, poor communication between patients and family decision-makers, as well as traditional concepts of filial piety and familial obligation that contribute to the pursuit of futile life-sustaining interventions (Chan et al. 2012;Chan and Yau 2010;Ho and Tan-Ho 2016). ...
Objectives:
The aims of this study are to identify the challenges faced by non-palliative care professionals (NPCPs) in caring for end-of-life patients; determine how these challenges interact with and influence each other systemically; and advance the theories and practices for supporting NPCPs in the provision of quality end-of-life care beyond the boundaries of palliative medicine.
Methods:
A constructivist phenomenological research design with an Interpretive-Systemic Framework of inquiry was adopted. Thirty-five physicians, 35 nurses, and 35 Medical Social Workers who play critical roles in caring for end-of-life patients and belonging to the 9 major medical disciplines of Cardiology, Geriatric, Intensive Care Medicine, Internal Medicine, Nephrology, Neurology, Oncology, Respiratory Medicine, and Surgery were recruited through purposive snowball sampling from 3 major public hospitals.
Results:
Framework analysis revealed 5 themes and 17 subthemes that illuminate the individual, relational, cultural, institutional, and structural challenges that NPCPs faced in rendering end-of-life care. These challenges influence each other within the health-care ecosystem, serving to perpetuate or heighten care obstacles.
Significance of results:
This is the first known study exploring the systemic challenges of NPCPs spanning 9 major medical disciplines and encompassing 3 professional stakeholders responsible for the care for end-of-life patients, thus ensuring perspective inclusivity across the health-care system. Recommendations that consider the complexity of the interactions between these systemic challenges are presented in detail.
... Cultural preferences may play a distinct role in driving these disparities, with previous evidence indicating the importance of cultural competency among providers in engaging in end-of-life discussions and promoting hospice use. 4,5 Additionally, these findings may reflect established tumor-specific survival patterns and disparities in access to palliative care affecting racial minorities with cancer. 6 Our study is constrained by the reliance on death certificates to determine locations of death, as well as the lack of additional decedent characteristics such as health insurance, geographic location, and household income. ...
Primary brain tumors are associated with severe cognitive effects on quality of life and poor overall survival. End-of-life experiences for these patients are critical1,2; the majority of patients wish to die at home or in a hospice facility, whereas death in hospital settings or nursing homes may be associated with lower rates of adequate symptom management and emotional support.³ Previous literature has revealed racial and sociodemographic disparities in location of death for cancer patients.² Therefore, we assessed trends in location of death among patients with malignant brain tumors to provide insight into these sociodemographic disparities for the neuro-oncology population.
Using the publicly available CDC WONDER database, we assessed associations between decedent characteristics and location of death for patients with primary malignant neoplasm of the brain (ICD10 codes C71.0-C71.9) through multivariable logistic regression, reporting adjusted odds ratios (ORs) with 95% confidence intervals (CI). We evaluated the significance of trends in location of death over time with linear regression models adjusting for time alone and the interaction between time and race. Additionally, we conducted subgroup analyses to verify our results across multiple brain anatomical regions. Locations of death included hospital, home, nursing facility, hospice facility, and outpatient medical facility/emergency department (ED). Decedent characteristics included age, sex, race, ethnicity, marital status, and education.
... Beside technical skills, surgeons should cultivate practical wisdom (Hall, 2011) and humility (Toledo-Pereyra, 2007), and internists their integrity, respect, and compassion (Bergsma and Thomasa, 1985). Anesthesiologists are often confronted with pain and decision-making or palliative care, so they could particularly benefit from, for instance, justice, temperance, self-effacement, and wisdom according to literature (Diesfeld, 2008;Braun et al., 2010;Guevara-López et al., 2015;Kaldjian, 2019). However, today's culture of medicine (example of the United States) is often hostile to 'truthful' professionalism and other qualities producing 'good' virtuous physicians as medicine has evolved into a giant, increasingly expensive technological profit center with young medical doctors only getting taught a list of required 'professional' practices (Coulehan, 2005). ...
Character strengths profiles in the specific setting of medical professionals are widely unchartered territory. This paper focused on an overview of character strengths profiles of medical professionals (medical students and physicians) based on literature research and available empirical data illustrating their impact on well-being and work engagement. A literature research was conducted and the majority of peer-reviewed considered articles dealt with theoretical or conceptually driven ‘virtues’ associated with medical specialties or questions of ethics in patient care (e.g., professionalism, or what makes a good physician). The virtues of compassion, courage, altruism, and benevolence were described most often. Only a limited number of papers addressed character strengths of medical students or physicians according to the VIA-classification. Those articles showed that the VIA-character strengths fairness, honesty, kindness, and teamwork were considered most often by respondents to be particularly important for the medical profession. Available cross-sectional (time span: six years) and longitudinal (time span: three years) data regarding VIA-character strengths profiles of medical professionals were analyzed (N = 584 medical students, 274 physicians). These profiles were quite homogenous among both groups. The character strengths fairness, honesty, judgment, kindness, and love had the highest means in both samples. Noteworthy differences appeared when comparing medical specialties, in particular concerning general surgeons and psychiatrists, with the former reporting clearly higher levels of e.g., honesty (d = 1.02) or prudence (d = 1.19). Long-term results revealed significant positive effects of character strengths on well-being and work engagement (e.g., perseverance on physicians’ work engagement) but also significant negative effects (e.g., appreciation of beauty and excellence on students’ well-being). Further, hope was significantly associated both positively with physicians’ well-being and negatively with students’ work engagement, possibly indicating specific issues concerning medical education or hospital working conditions. According to the modern-day physician’s pledge, medical professionals should pay attention to their own well-being and health. Therefore, promoting self-awareness and character building among medical professionals could be a beneficial strategy.
... La primera está relacionada con la selección de las virtudes. Hay autores que no reconocen todas las aquí recogidas, y añaden otras como la paciencia 10 , la compasión 11 , la firmeza, la abnegación y la modestia 12,13 . Otros autores distinguen entre conjuntos de virtudes según la tarea desempeñada por el profesional sanitario. ...
... Although beyond the scope of the current review, some included studies discussed the influence of a clinician's own cultural background on ACP and EOL care delivery. 41,45,54,55,62 Given that EOL communication is a two-way process, the influence of clinicians' cultural background is another area that requires evidence synthesis. Future research into communication-focused ACP interventions and solutions to overcome resource barriers to their implementation would also be valuable. ...
Context:
Advance care planning (ACP) can improve end-of-life outcomes, but low uptake indicates it is less acceptable to patients of some cultural backgrounds.
Objectives:
To explore how cultural factors influence ACP for patients with progressive, incurable disease and how ACP could be made cross-culturally appropriate.
Method:
Systematic literature review using narrative synthesis. Protocol registered prospectively (PROSPERO CRD42017060441). Key words and subject headings of six databases (AMED, PsycINFO, Embase, Ovid MEDLINE, CINAHL, Cochrane) were searched without time restrictions. Eligible studies reported original research published in full that included adult participants with progressive, incurable disease or their formal or informal caregivers. Study quality was assessed using the Mixed Methods Appraisal Tool.
Results:
818 studies were screened. 27 were included: 20 quantitative, 4 qualitative and 3 mixed methods. Most (20/30) studies were conducted in the USA, where non-White ethnicity was associated with lower acceptability of formal, documented ACP processes. Cultural factors affecting ACP acceptability included religiosity, trust in the healthcare system, patient and clinician comfort discussing death, and patient attitudes regarding decision-making. Informal, communication-focused approaches to ACP appear more cross-culturally acceptable than formal processes. Clinician education in cultural-competence is recommended. Study limitations included use of un-validated tools and convenience samples, and lack of reflexivity.
Conclusion:
Many interconnected cultural factors influence the acceptability of ACP in progressive, incurable disease, although specific mechanisms remain unclear. A communication-focused approach may be valuable in adapting ACP to meet the needs of culturally diverse populations.
... Braun et al reported that physicians in focus groups generally did not think their own faith or religious beliefs influenced their ACP, although there were some differences by ethnicity. 7 In another study, most physicians believed it appropriate to discuss religious/spiritual issues during EOL care when a patient brings them up and would encourage patients in their own beliefs and practices, 8 implying that their own personal religious views would not be determinant. ...
Objective:
To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement.
Methods:
Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs' ACP participation.
Results:
704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). "No religion" was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP's religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants.
Conclusions:
Personal religious preference is associated with HCP's own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.
... Perhaps that explains the doctors' attitudes and opinions toward the people living in VS, and why those people are portrayed as already deceased [17]. In view of the fact that doctors opinions are fundamental to make sensitive decisions [27], it is noteworthy the impact of medical bias when advising the family decision-makers of the people in LLNS [16]. It is expected, then, the physicians to express prognosis humbly recognizing knowledge they do not possess. ...
In mid-2013, a small city in southwestern Argentina lost its provincial quietness
after two sisters required withdrawing hydration and nutrition from their 49-year-old
brother who had been living in vegetative state for decades. The sisters alleged their
brother would not have wanted living so; however, they possessed no written proofs,
but only a testimony of a conversation the siblings would have had when they were
teenagers. In contrast, the employees of the nursing home, who actually were caring
for the brother, rejected the sisters’ request arguing that the brother was still alive, and
withdrawal of water and food will directly provoke his death. Because of disagreement
between the relatives and caregivers, the case was brought to the Court what caught
the attention of the media that soon turned this intimate story into a national sensation,
and split the locals into adversaries. Ethics committees, specialists, and religious
authorities were asked for opinions. On request of some local people interested in
understanding the case, the Institute of Bioethics at Catholic University of Argentina
released a document that has served as a reference for the current case report. By
analyzing the facts from medical, anthropological and ethical perspectives, the
following case report focuses on aspects such as difficulties in making consciousnesscentered
diagnosis and conceiving new states of life with different neurological status;
association of functional impairment and worthiness of a personal life; robustness of
advance directives made without knowing circumstances; ethical standard and human
nature, among others.
... Our results show that end-of-life discussions, such as BPC, that involve death and other existential issues have the potential to also affect the physician on a personal level. This is consistent with previous studies showing that existential dialogues are often perceived to be demanding and difficult (Braun, Ford, Beyth, & McCullough, 2010;Johansson & Lindahl, 2012; this is not enough to resolve communication problems (Fallowfield et al., 2002). Furthermore, every patient has a right to information and communication regardless of the physician's experience. ...
The aim of this study was to explore palliative home care physicians' experiences regarding end-of-life breakpoint communication (BPC). This is a qualitative study where focus group interviews were conducted and analysed using qualitative content analysis. The results show that the participants saw themselves as being responsible for accomplishing BPC, and they were convinced that it should be regarded as a process of communication initiated at an early stage, i.e. proactively. However, BPC was often conducted as a reaction to the patient's sudden deterioration or sometimes not at all. The barriers to achieving proactive BPC included physicians' uncertainty regarding the timing of BPC, primarily due to difficulties in prognostication in terms of time of death, and uncertainty as to what BPC should include and how it should best be approached. Furthermore, there was insufficient documentation regarding previous BPC, which impeded proactive BPC. Although our study shows that physicians are ambitious when it comes to the communication of information to patients and families, there is a need for further training in how to conduct BPC and when to initiate the BPC process. Furthermore, there should be documentation that different professionals can access as this would appear to facilitate a proactive BPC process.
... Building cultural competency and delivery of appropriate care should be a goal for health professions and providers (Braun, Ford, Beyth, & McCullough, 2010;Sullivan, Lakoma, & Block, 2003). Variations in culturally responsive care are driven by informal versus formal advance care planning used by different cultures (Carr, 2012), degree of U.S. acculturation (Roncancio, Ward, & Berenson, 2011), and poor timing (e.g., during acute illness) for advance care planning as perceived by patients and health care providers (Sharp, Moran, Kuhn, & Barclay, 2013). ...
Objective:
What is the characterization of family involvement in health decisions, filial piety, religiosity/spirituality, and fatalism as they relate to attitudes/intentions toward end-of-life (EOL) planning/decision making among elderly Dominicans and Puerto Ricans in East Harlem, New York City?
Method:
An exploratory study using grounded theory and domain analysis was conducted with 51 elderly Dominicans and Puerto Ricans. Purposive and emerging themes were identified by three coders.
Results:
Purposive themes were family involvement in health decisions/filial piety and religiosity/spirituality/fatalism and for clinical EOL-related terms; emerging themes were accessing/using EOL care, autonomy, influence of death/dying on own future care decisions, and death/dying is a private matter.
Implications:
The recommendations for community members are to empower awareness of EOL issues, engage providers regarding cultural needs, and clarification of advance care planning (ACP) function; the recommendations for providers are to engage patients to enhance culturally responsive care, clarify ACP function, and ask patients about preference for roles of family and God in decisions; the recommendations for policy makers are to enhance palliative education/access and immigration status research protections.
... Patient preferences about end-of-life care differ significantly by race/ethnicity (18)(19)(20), and physician preferences tend to mirror those expressed by patients of the same race/ethnicity (21). It is not surprising then, that physician attitudes about communication with seriously ill patients might be influenced by race/ethnicity and the culture in which their attitudes about dying and death developed (22). In our sample, where most of the minority trainees were Asian, specific cultural attitudes about disclosure and information-sharing may offer some insight into our finding of higher levels of pessimism among trainees of minority race/ ethnicity. ...
Context:
An enhanced understanding of trainee attitudes about end-of-life care is needed to inform interventions to improve clinician communication about dying and death.
Objectives:
To examine changes in trainee pessimism about end-of-life care over the course of one academic year and to explore predictors of pessimism among residents, fellows, and nurse practitioners.
Methods:
We used baseline and follow-up surveys completed by trainees during a randomized controlled trial of an intervention to improve clinician communication skills. Surveys addressed trainee feelings about end-of-life care. Latent variable modeling was used to identify indicators of trainee pessimism, and this pessimism construct was used to assess temporal changes in trainee attitudes about end-of-life care. We also examined predictors of trainee pessimism at baseline and follow-up. Data were available for 383 trainees from two training programs.
Results:
There was a significant decrease in pessimism between baseline and follow-up assessments. Age had a significant inverse effect on baseline pessimism, with older trainees being less pessimistic. There was a direct association of race/ethnicity on pessimism at follow-up, with greater pessimism among minority trainees (P=0.028). The model suggests that between baseline and follow-up, pessimism among younger white non-Hispanic trainees decreased, whereas pessimism among younger trainees in racial/ethnic minorities increased over the same time period.
Conclusion:
Overall, trainee pessimism about end-of-life care decreases over time. Pessimism about end-of-life care among minority trainees may reflect the influence of culture on clinician attitudes about communication with seriously ill patients. Further research is needed to understand the evolution of trainee attitudes about end-of-life care during clinical training.
... Hispanic American individuals, along with Asian American and Eastern European American individuals, are more likely than other minority groups to prefer nondisclosure pertaining to poor health care outcomes (Larkin & Searight, 2014). In addition, clinicians have found that some Hispanic families do not want the patient to know about his/her own terminal diagnosis (Braun, Ford, Beyth, & McCullough, 2010). However, clinicians should refrain from assuming that all Hispanic older adults prefer to not be involved in important decisions or provided with complete health care information. ...
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Activity Objectives
1. Explain familism and its potential effect on health care provision to Hispanic older adults.
2. Describe cultural considerations with decision making and caregiving within Hispanic families.
Disclosure Statement
Neither the planners nor the authors have any conflicts of interest to disclose.
The Hispanic older adult population's rapid growth calls for an awareness of values that can affect the rendering and receipt of care. Familism, or familismo , a traditional Hispanic value, places importance of family over the self and can potentially affect health care perceptions and practices for Hispanic older adults. The current article discusses familism, which is upheld by some Hispanic older adults, and the potential for underuse of health care services. The traditional feminine role, marianismo , and masculine role, machismo , are considered, as well as implications for how decision making may be made by family members rather than the patient. Clinical implications for the provision of health care to Hispanic older adults are provided, along with the importance of considering acculturation and ethnic heterogeneity. Health care management strategies that reflect recognition and respect of familism, yet emphasize optimization of adherence and self-care, are described. [ Journal of Gerontological Nursing, 42 (1), 21–29.]
... La primera está relacionada con la selección de las virtudes. Hay autores que no reconocen todas las aquí recogidas, y añaden otras como la paciencia 10 , la compasión 11 , la firmeza, la abnegación y la modestia 12,13 . Otros autores distinguen entre conjuntos de virtudes según la tarea desempeñada por el profesional sanitario. ...
Aim
To determine which professional virtues are more valued by patients in a Palliative Care Unit, and their importance as regards technical skills.
Method
Descriptive type of a Quantitative Study. Data was obtained by using questionnaires. Volunteers were patients of the Palliative Care Unit of Centro de Cuidados Laguna's Hospital.
Results
The sample consisted of 42 patients. Among the ten professional qualities chosen by them, six were virtues. The five most rated qualities were: joy (61.9%), respect (57.1%), pain control (52.4%), help when patient did not feel good (47.6%), and sincerity (47.3%). As regards the priorities in the list of ten qualities created by the patient, the first positions were taken by: pain control (85%), joy (72%), help when patient does not feel good (67%), respect (58%), help when patient feels discouraged (54%), and sincerity (51%).
Conclusions
Palliative patients value significantly professional virtues. Among all the virtues, joy was the most appreciated, which is precisely that which demands more commitment. However, because the sample of this study is small, a larger study is needed to confirm the conclusion.
... La primera está relacionada con la selección de las virtudes. Hay autores que no reconocen todas las aquí recogidas, y añaden otras como la paciencia 10 , la compasión 11 , la firmeza, la abnegación y la modestia 12,13 . Otros autores distinguen entre conjuntos de virtudes según la tarea desempeñada por el profesional sanitario. ...
Resumen
Objetivo: Conocer las virtudes profesionales más valoradas por los pacientes y su importancia
respecto a las habilidades técnicas.
Método: Estudio cuantitativo, tipo descriptivo, mediante el empleo de encuestas. El estudio se
ha realizado en pacientes paliativos del Hospital Centro de Cuidados Laguna.
Resultados: Muestra de 42 pacientes. Entre las 10 prestaciones que escogió el paciente, 6
fueron virtudes del profesional sanitario. Las 5 prestaciones más valoradas fueron las siguientes:
alegría (61,9%), respeto (57,1%), control del dolor (52,4%), ayuda ante la sensación del paciente
de encontrarse mal (47,6%) y la sinceridad (47,3%). Con respecto a la prioridad concedida a los
10 ítems elegidos por cada paciente, las primeras posiciones las ocuparon el control del dolor
(85%), la alegría (72%), la ayuda ante la sensación del paciente de encontrarse mal (67%), el
respeto (58%), la asistencia ante el desánimo (54%) y la sinceridad (51%).
Conclusiones: Los pacientes de Cuidados Paliativos valoran las virtudes por encima de las habilidades
técnicas en los profesionales que les atienden. De entre todas las virtudes, la más
valorada fue la alegría, que es precisamente aquella que exige mayor compromiso existencial
de entre todas. Sin embargo, para confirmar la conclusión de este estudio piloto y dado que la
muestra aquí manejada es peque˜na se hace necesario planear una investigación que evalúe a
un mayor número de pacientes
... Culture and religion are among a multitude of factors that influence end-of-life decisions [16]. They impact the perception and behavior of patients and their treating physicians [17]. In Jordan, like it is the case in the Middle East and some Southern and Eastern European countries, the principles of beneficence and non-malfeasance outweigh patient autonomy and play a predominant role in the process of decision making [16]. ...
Background
Some comprehensive cancer centers in industrialized countries have reported improved outcomes in their cardiopulmonary arrest (CPA) patients. Little is known about the outcomes and predictors of CPA in cancer centers in other parts of the world. The objective of this study was to examine the predictors of CPA outcome in a comprehensive cancer center closed medical-surgical intensive care unit (ICU) located in Amman, Jordan.
Methods
In this retrospective single-center cohort study, we identified 104 patients who had a CPA during their stay in the ICU between 1/1/2008 and 6/30/2009. Demographic data and CPA-related variables and outcome were extracted from medical records. Comparisons between different variables and CPA outcome were conducted using logistic regression.
Results
The mean age of the group was 49.7 ± 15.3 years. The mean APACHE II score was 23.7 ± 8.0. Thirty six patients (34.6%) were resuscitated successfully but 8 of them (7.7% of the cohort) left the ICU alive and only 6 out of the 8 (5.8% of the cohort) left the hospital alive. The following variables predict resuscitation failure: acute kidney injury (OR 1.7, CI: 1.1 – 2.6), being on mechanical ventilation (OR 3.8, CI: 1.3 – 11), refractory shock (OR 4.7, CI: 1.8 – 12) and CPR duration (OR 1.1, CI: 1.1 – 1.2).
Conclusion
Survival among cancer patients who develop CPA in the ICU continues to be poor. Once cancer patients suffered a CPA in the ICU multiple factors predicted resuscitation failure but CPR duration was the only factor that predicted resuscitation failure and ICU as well as hospital mortality.
... Physicians are also influenced by their own cultural and personal values. Studies have demonstrated the personal difficulties some physicians encounter with Western truth-telling practices [29]. The ETHICUS (End-of-Life Practices in European Intensive Care Units) study found physicians from southern European regions displayed more paternalistic patterns in end-of-life decisions and communicated less with patients and their families [30]. ...
Truth telling, a cardinal rule in Western medicine, is not a globally shared moral stance. Honest disclosure of terminal prognosis and diagnosis are regarded as imperative in preparing for the end of life. Yet in many cultures, truth concealment is common practice. In collectivist Asian and Muslim cultures, illness is a shared family affair. Consequently, decision making is family centred and beneficence and non-malfeasance play a dominant role in their ethical model, in contrast to patient autonomy in Western cultures. The 'four principles' are prevalent throughout Eastern and Western cultures, however, the weight with which they are considered and their understanding differ. The belief that a grave diagnosis or prognosis will extinguish hope in patients leads families to protect ill members from the truth. This denial of the truth, however, is linked with not losing faith in a cure. Thus, aggressive futile treatment can be expected. The challenge is to provide a health care service that is equable for all individuals in a given country. The British National Health Service provides care to all cultures but is bound by the legal principles and framework of the UK and aims for equity of provision by working within the UK ethical framework with legal and ethical norms being explained to all patients and relatives. This requires truth telling about prognosis and efficacy of potential treatments so that unrealistic expectations are not raised.
Upon admission to an intensive care unit, doctors should engage in a discussion with their patients about the life-sustaining treatments (e.g., cardiopulmonary resuscitation and invasive mechanical ventilation) that could be needed in case of a degradation of their health condition. Documenting levels of care is a communication strategy that helps translate patients’ wishes into a treatment plan that integrates patients’ values, preferences and prognosis. Without such discussions, interventions that prolong life at the cost of decreasing its quality may be used without appropriate guidance from patients. Shared decision making
is recommended to facilitate doctors' and patients' discussions about levels of care. Patient decision aids can support shared decision making. However, there existed no French language decision aid adapted to the context of our intensive care unit serving a francophone population in the Province of Quebec.
This thesis presents the steps that led to the adaptation of a decision aid about levels of care in a single francophone intensive care unit in Lévis, Québec. We employed user-centered design to adapt a patient decision aid about cardiopulmonary resuscitation and a clinical prediction rule. The final patient decision aid includes: 1) a values-clarification section; 2) questions about the patient’s functional autonomy prior to admission to the ICU and the functional decline that they would judge acceptable upon hospital discharge; 3) risks and
benefits of cardiopulmonary resuscitation and mechanical ventilation; 4) population-level statistics about cardiopulmonary resuscitation; and 5) a summary section. We also used a wiki to program an online risk calculator based on the Good Outcome Following Attempted Resuscitation prediction rule that we linked to the IconArray.com risk representation software. The final tool and calculator are available at www.wikidecision.org. This thesis also contains a review of the scientific literature about obstacles to discussions about levels of care. It also includes our observations and our thoughts on the obstacles to discussions about levels of care.
Objectives
The end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.
Design
We conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.
Setting
Academic teaching hospitals in the United States and United Kingdom.
Participants
We interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.
Results
Some trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.
Conclusions
This study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.
Background: Religion/spirituality plays a vital role in most aspects of Muslims' lives. However, there has been little research on the part of religion/spirituality in health professionals' clinical experience with patients with
genetic disorders, including long QT syndrome.
Methods: This qualitative study explored health professionals' views working in Saudi Arabia concerning the role of Islam in their clinical practice. Semi-structured interviews were undertaken with 12 health professionals from two cardiogenetic centers in Saudi Arabia.
Results: The participants included clinical geneticists (4/12), genetic counselor (1/12), molecular geneticists (2/12), cardiologists (3/12), and patient coordinators (2/12). The data were analyzed using thematic analysis, and three main themes were identified: (1) the value attributed to religion/spirituality in the context of genetic counseling, (2) professional and patient-level barriers to formal religious assessment and conversations in the context of genetic counseling, and (3) incorporating religion/spirituality into genetic counseling sessions.
Conclusion: The study sheds light on the advantages of using informal religious language to establish rapport and build trust between patients and health professionals in genetic counseling. It also draws attention to the importance of exploring patients' willingness to discuss religious issues. Participants identified a lack of appropriate training as a significant barrier to attending to patients' religious/spiritual needs during genetic counseling. [JBCGenetics 2020; 3(2.000): 60-70]
Background:
The National Academies of Medicine describes clinician burnout as a serious threat to organizational health, including employee turnover.
Purpose:
To determine the relationship between resilience, burnout, and organizational and position turnover.
Methods:
We surveyed direct care nurses in three hospitals one year apart between 2018 and 2019; 1,688 nurses completed 3,135 surveys included in analysis.
Findings:
We find 54% of nurses in our sample suffer from moderate burnout, with emotional exhaustion scores increasing by 10% and cynicism scores increasing 19% after one year. The impact of burnout on organizational turnover was significant, with a 12% increase in a nurse leaving for each unit increase on the emotional exhaustion scale, though it was not a factor in position turnover.
Discussion:
These findings contribute to the growing body of evidence of nurse burnout and support policies and programs for annual measurement of burnout, increased employee wellbeing support, and improved work environments.
Families are involved in decision-making regarding end-of-life (EOL) care in Japan. However, how support from medical professionals toward families' decision-making affects families' satisfaction with EOL care has not been adequately studied. We aimed to examine the impact of support from medical professionals considering the care recipients' preferences on families' overall satisfaction with EOL care and the mediating effect of fulfilling care recipients' preferences.
We administered self-report questionnaires through home-nursing providers to bereaved families (n=753), who lost loved ones between April 2015 and March 2016. Analyses were conducted with 237 of these bereaved families whose loved ones had been ≥65 years old, and had no missing values in key variables. We asked whether the families had received any support from medical professionals in determining the care recipients' EOL preferences, in discussing how to honor the care recipients' own interests, and in supporting the families' decision-making. We also collected data measuring the overall satisfaction with EOL care, families' perceptions that the care recipients' preferences were honored during EOL care, and demographic characteristics of care recipients and caregivers.
Data from 58 male and 179 female family members were analyzed. The average age was 65.8 (standard deviation [SD]=11.9) years. Care recipients were 113 men and 124 women, and their average age was 83.0 (SD=9.1) years old at the time of death. A path analysis revealed that support for families from medical professionals was related to families' satisfaction with EOL care through the mediating factor of fulfilling care recipients' preferences.
Support from medical professionals considering care recipients' preferences will help families' involvement in EOL decision-making.
Objectives
The purpose of this study was to assess laypersons’ attitudes and completion of advance care planning (ACP) and to examine associations with sociodemographic characteristics and health beliefs on Alzheimer's disease.
Methods
A cross-sectional telephone survey was conducted during April and May 2017, with a sample of 514 Israeli adults, aged 18 years and above. A structured, pretested questionnaire assessing participants’ awareness, attitudes, and completion of ACP, as well as health beliefs on Alzheimer's disease (subjective knowledge, susceptibility, and worry), and sociodemographic factors, was used.
Results
Two-fifths of the participants had heard of at least one of the terms: advance directives or durable power of attorney. Overall, participants expressed positive attitudes toward ACP. Results of regression models showed that gender, religiosity, and subjective knowledge of Alzheimer's disease were statistically significant correlates of attitudes toward ACP. Adding health beliefs on Alzheimer's disease doubled the amount of the variance explained, from 3% to 6%.
Significance of results
Our results support the use of cognitive models of health behavior by assessing intra-personal beliefs and knowledge to understand ACP attitudes and completion. Specifically, we demonstrated the importance of knowledge of Alzheimer's disease for ACP attitudes, suggesting the importance of including a module on the topic to ACP interventions.
The purpose of this study was to compare attitudes toward death anxiety and preferences for care near the end of life between nurses and physicians. Data were collected from 225 employees (150 nurses, 75 physicians) working in a tertiary hospital in South Korea. The study found a higher presence of death anxiety in nurses than physicians. Within the category of death anxiety, the “dying of others” was highest in nurses, whereas the “death of others” was highest in physicians. Among the five dimensions of the preferred care near the end of life, “pain” was the most preferred dimension while “decision-making by health care professionals” was the least preferred dimension for both nurses and physicians. Physicians preferred autonomous decision-making and decision-making by healthcare professionals; nurses preferred pain and spirituality. The results show that adequate pain relief is the most preferred care at the end of life for both nurses and physicians. This study indicates that nurses and physicians consider patient autonomy, pain control, and spirituality as important factors in end-of-life care. On the basis of these findings, we conclude that educational intervention programs are needed to reduce the death anxiety of nurses and physicians and thereby improve their terminal care performance.
Clinical decision-making may have a role in racial and ethnic disparities in healthcare but has not been evaluated systematically. The purpose of this study was to synthesize qualitative studies that explore various aspects of how a patient’s African-American race or Hispanic ethnicity may factor into physician clinical decision-making. Using Ovid MEDLINE, Embase, and Cochrane Library, we identified 13 manuscripts that met inclusion criteria of usage of qualitative methods; addressed US physician clinical decision-making factors when caring for African-American, Hispanic, or Caucasian patients; and published between 2000 and 2017. We derived six fundamental themes that detail the role of patient race and ethnicity on physician decision-making, including importance of race, patient-level issues, system-level issues, bias and racism, patient values, and communication. In conclusion, a non-hierarchical system of intertwining themes influenced clinical decision-making among racial and ethnic minority patients. Future study should systematically intervene upon each theme in order to promote equitable clinical decision-making among diverse racial/ethnic patients.
Health literacy has been touted as an important predictor of health care status in the United States. However its definition has rapidly evolved given the introduction of different media for the transmission of health-related information and an expanding base of medical knowledge. While a number of tools exist for evaluating one's health literacy level, the widespread adoption and accuracy of these methods, remains poorly understood. In the US alone millions are believed to be affected by low health literacy, rendering these patients incapable of making informed decisions within the clinical setting. Given the well-documented impact that low health literacy can have on one's health and ability to make use of public health care facilities, an understanding of the components of literacy and health literacy is prudent. The epidemiological determinants of health literacy, its origins, and its effects are reviewed.
Surrogate decision-making is a difficult task requiring application of the substituted judgment standard, or in the absence of knowledge of patients’ wishes or values, the best interest standard in deciding for others. Because patients empower their surrogates to various degrees depending on their decision-making style, surrogate decision-making can be a very burdensome task. Special circumstances occur for the so-called unbefriended patient if no surrogate decision-maker is available due to lack of family/friends.
Advance directives can make deciding for others easier by (a) allowing the patient to name someone he/she trusts most to make decisions for him/her (medical power of attorney, i.e., MPOA) and/or by (b) specifying which treatments would be acceptable or unacceptable in certain states of disease (living will). Different interventions have been proposed to improve the content and process of advance care planning. Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST) are physician orders which have the advantage of being transferable to different care settings, whereas a DNR order is only applicable in one particular care setting.
According to the dominant models of medical ethics in the United States and many Western countries,
physician disclosure of information such as diagnosis, treatment options, and prognosis is
considered an essential precondition for patient informed consent. While being consistent with
the principle of patient autonomy stressed in many Western healthcare systems, full disclosure—
particularly of life-threatening diagnoses and poor prognoses—is inconsistent with the cultural
values of many ethnic communities within the United States. A systematic review of research examining
cultural preferences for disclosure of medical “bad news” was conducted. Results suggested
that cultural preferences are more heterogeneous than has often been portrayed. Particularly
when communicating with patients and families from culturally and ethnically diverse backgrounds,
health care professionals should ask about preferences for receiving medical information
and making treatment decisions.
Advances in modern medical technology have gone so far that it is now possible for machinery to keep people alive. To some extent this has led to a misperception in society that death can almost always be postponed because life-sustaining extracorporeal machinery of some sort or another, for example a dialysis machine, can prevent it. However, for some, being kept alive connected to a dialysis machine for four hours three times a week does not represent or even come close to an existence or quality of life they consider valuable. It may even cause unnecessary distress. This may be because they have reached a point at the end of their lives where they would like the focus of their treatment or care to become that which enables them to live as well as possible until they die. In these circumstances treatment and care should properly be that which enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. Identifying and acknowledging the importance of such a paradigm shift in the delivery of healthcare, and above all facilitating it, includes taking on the responsibility, incumbent upon us all, to address the ethical issues that are brought into focus. In this paper, I examine some of these issues. I consider the ways in which underlying theoretical ethical principles have informed the development of professional guidance and highlight the dynamic relationship this guidance has with the law. Finally, I demonstrate the ways in which it can be usefully applied to inform and assist clinical decision-making. Key challenges for BAME groups are addressed.
Purpose: The purpose of this study was to investigate end-of-life care preferences of employees working in a university hospital. Methods: Of 650 eligible employees that were approached, 607 employees (386 nurses, 93 physicians, and 128 general staff) completed the Korean version of Preferences for Care Near the End of Life (PCEOL-K). Results: Among 5 dimensions of the PECOL-K, "Pain" was the most preferred care dimension and "Decision making by health care professional" was the least preferred care dimension. The item that received the highest mean score was "I want to let nature guide my dying and I do not want my life to be artificially prolonged in any way", and the lowest item was "I want health care providers to make all decisions about my care". As preferred care near the end of life, nurses gave lower scores to the life sustaining treatment and decision making by health care profession than physicians and general staff. Compared to physicians and nurses, general staff preferred the decision making by health care professional and by family. Conclusion: The results show that adequate pain relief is the most preferred care at the end of life among hospital employees and non-medical personnel preferred decision making by others.
Purpose:
Awareness of the status of disease among terminally ill cancer patients is an important part of the end-of-life care. We have evaluated how palliative care consultative service (PCCS) affects patient disease awareness and determined who may benefit from such services in Taiwan.
Methods:
In total, 2,887 terminally ill cancer patients consecutively received PCCS between January 2006 and December 2010 at a single medical center in Taiwan, after which they were evaluated for disease awareness. At the beginning of PCCS, 31 % of patients (n = 895) were unaware of their disease status. The characteristics of these 895 patients were analyzed retrospectively to determine variables pertinent to patient disease awareness after PCCS.
Results:
In total, 485 (50 %) of the 895 patients became aware of their disease at the end of PCCS. Factors significantly associated with higher disease awareness included a longer interval between the date of hospital admission and that of PCCS referral (>4 weeks versus ≤2 weeks), a longer duration of PCCS (>14 days versus ≤7 days), the male gender, divorced marital status (versus married), and family awareness (versus lack of family awareness). Lower disease awareness was associated with older age (age > 75 years versus age = 18-65 years), referral from non-oncology departments, and primary cancer localization (lung, colon-rectum, or urological versus liver).
Conclusions:
Disease awareness is affected by multiple factors related to the patients, their families, and the clinicians. The promotion of PCCS increased disease awareness among terminally ill cancer patients in Taiwan.
What are the ethical responsibilities of the medical staff (doctors, nurses, social workers, and chaplains) regarding the preservation of meaningful life for their patients who are approaching the end of life (EOL)? In particular, what is the staff's ethical responsibility to initiate a conversation with their patient regarding palliative care? By subjecting traditional Jewish teachings to an ethical analysis and then exploring the underlying universal principles, we will suggest a general ethical duty to inform patients of the different care options, especially in a manner that preserves hope. The principle that we can derive from Jewish bioethics teaches that the medical staff has a responsibility to help our patients live in a way that is consistent with how they understand their task or responsibility in life. For some patients, the best way to preserve a meaningful life in which they can fulfill their sense of purpose in the time that remains is to focus on palliation. For this reason, although palliative and supportive care are provided from the time of diagnosis, it is critical we make sure our patients realize that they have the opportunity to make a decision between either pursuing additional active treatments or choosing to focus primarily on palliative therapies to maximize quality of life. The Jewish tradition and our experience in spiritual care suggest the importance of helping patients preserve hope while, simultaneously, honestly acknowledging their situation. Staff members can play a vital role in helping patients make the most of this new period of their lives.
This study aimed to compare multiaspect characteristics in cancer and noncancer patients who received palliative care. Totally, 226 patients with cancer and 115 noncancer patients received palliative care consultation service in Taiwan from September 2007 through December 2009 were retrospectively analyzed. Noncancer patients were older (81 vs 67 years, P < .001), more likely to be enrolled from an intensive care unit (51% vs 5%, P < .001), and waited longer to be referred for admission to a palliative care (8 vs 3 days, P < .001) than patients with cancer. Cancer and noncancer patients presented as polysymptomatics in both physical and psychosocial symptoms at the end of life. Such physical and psychosocial characteristics should be taken into account in providing appropriate end-of-life care in the same way as it is for the patients with cancer.
End-of-life (EOL) decision making is an integral component of high-quality health care. Factors influencing individual primary care physicians (PCPs) can affect their perspectives and referral preferences for EOL care. Numerous barriers have been cited, including patient and family readiness, physicians' comfort with discussing death, and the pursuit of a cure. This study explores another barrier by examining physician ethnicity and comparing the attitudes toward hospice referral between African American and white American primary care providers (PCPs). Training PCPs to efficiently transition from a curative model of care to a palliative model of care has the potential to increase the level of appropriate EOL care, increase hospice referral, and enhance patient and provider satisfaction; it is also fiscally prudent. This preliminary study aims to compare attitudes toward hospice referral and physicians' personal experiences with hospice between African American and white American PCPs.
The survey tool was developed by PCPs at the Mayo Clinic Florida after a full literature review and consultation with hospice physicians, oncology specialists, and primary care colleagues from the residency programs at Mayo Minnesota and Mayo Arizona, with input from the Mayo Survey Office, and distributed to all physicians and residents in the departments of Family Medicine at via Mayo's intranet; Mayo's Midwest Regional Practices (245 physicians) received the survey via standard mail. The survey consisted of 17 questions regarding attitudes toward hospice referral and the one question regarding physicians' personal experience with hospice. The final sample size consisted of 167 white American physicians and 46 African American physicians. Responses were compared using a Wilcoxon rank sum test. P values ≤ 0.05 were considered statistically significant. All statistical analyses were performed using the SAS software package (SAS Institute, Cary, North Carolina).
The distributions of physician age, specialty, board certification, and years practicing medicine were similar between African American and white American physicians, while male gender was more common in white American physicians than African American physicians. Statistically significant differences in attitudes toward hospice between African American and white American physicians were observed for five of the 17 survey questions. There was a dramatic difference in the distribution of patient race between African American and white American physicians, raising the possibility that any differences between white American and African American physicians could be attributed to patient race, rather than physician race. Due to survey limits, larger studies involving more African American physicians are needed to address this topic.
The results of our preliminary study suggest that certain attitudes toward hospice referral may differ between African American and white American PCPs. If validated, further insight into this issue could lead to educational programs for PCPs that correct misperceptions.
Terminally-ill patients and their families often report poor communication and limited understanding of the patient's diagnosis, prognosis, and treatment plan; these deficits can be exacerbated by cross-cultural issues. Although family meetings are frequently recommended to facilitate provider-family communication, a more structured, evidence-based approach to their use may improve outcomes. Drawing on research and guidelines from critical care, palliative care, and cross-cultural communication, we propose a framework for conducting family meetings with consideration for cross-cultural issues.
Objective.
—To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making.
To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making.
Survey.
Thirty-one senior citizen centers within Los Angeles County, California.
A stratified quota sample of 200 subjects aged 65 years and older self-identified as being from each of four ethnic groups: European American, African American, Korean American, or Mexican American (N = 800).
Korean Americans (47%) and Mexican Americans (65%) were significantly less likely than European Americans (87%) and African Americans (88%) to believe that a patient should be told the diagnosis of metastatic cancer. Korean Americans (35%) and Mexican Americans (48%) were less likely than African Americans (63%) and European Americans (69%) to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-supporting technology (28% and 41% vs 60% and 65%). Instead, Korean Americans and Mexican Americans tended to believe that the family should make decisions about the use of life support. On stepwise multiple logistic regression, ethnicity was the primary factor related to attitudes toward truth telling and patient decision making.
Korean-American and Mexican-American subjects were more likely to hold a family-centered model of medical decision making rather than the patient autonomy model favored by most of the African-American and European-American subjects. This finding suggests that physicians should ask their patients if they wish to receive information and make decisions or if they prefer that their families handle such matters.
To determine whether physicians' preferences for end-of-life decision-making differ between blacks and whites in the same pattern as patient preferences, with blacks being more likely than whites to prefer life-prolonging treatments.
A mailed survey.
American Medical Association (AMA) and National Medical Association (NMA) databases. To enrich the sample of black physicians, we targeted physicians in the AMA database practicing in high minority area zip codes and graduates of the traditionally black medical schools.
Self-reported physician attitudes toward end-of-life decision-making and preference of treatment for themselves in persistent vegetative state or organic brain disease compared by race, controlling for age and gender.
The 502 physicians (28%) who returned the questionnaire included 280 white and 157 black physicians. With regard to attitudes toward patient care, 58% of white physicians agreed that tube-feeding in terminally ill patients is "heroic," but only 28 % of black physicians agreed with the statement (P < .001). White physicians were more likely than black physicians to find physician-assisted suicide an acceptable treatment alternative (36.6% vs 26.5% of black physicians) (P < .05). With regard to the physicians preferences for future treatment of themselves for the persistent vegetative state scenario, black physicians were more than six times more likely than white physicians to request aggressive treatments (cardiopulmonary resuscitation, mechanical ventilation, or artificial feeding) for themselves (15.4% vs 2.5%) (P < .001). White physicians were almost three times as likely to want physician-assisted suicide (29.3% vs 11.8%) (P < .001) in this scenario. For a state of brain damage with no terminal illness, the majority of all physicians did not want aggressive treatment, but black physicians were nearly five times more likely than white physicians (23.0% vs 5.0%) (P < .001) to request these treatments. White physicians, on the other hand, were more than twice as likely to request physician-assisted suicide (22.5% vs 9.9%), P < .001 in this scenario.
Physicians preferences for end-of-life treatment follow the same pattern by race as patient preferences, making it unlikely that low socioeconomic status or lack of familiarity with treatments account for the difference. Self-denoted race may be a surrogate marker for other, as yet undefined, factors. The full spectrum of treatment preferences should be considered in development of guidelines for end-of-life treatment in our diverse society.
Many studies have documented race and gender differences in health care received by patients. However, few studies have related differences in the quality of interpersonal care to patient and physician race and gender.
To describe how the race/ethnicity and gender of patients and physicians are associated with physicians' participatory decision-making (PDM) styles.
Telephone survey conducted between November 1996 and June 1998 of 1816 adults aged 18 to 65 years (mean age, 41 years) who had recently attended 1 of 32 primary care practices associated with a large mixed-model managed care organization in an urban setting. Sixty-six percent of patients surveyed were female, 43% were white, and 45% were African American. The physician sample (n = 64) was 63% male, with 56% white, and 25% African American.
Patients' ratings of their physicians' PDM style on a 100-point scale.
African American patients rated their visits as significantly less participatory than whites in models adjusting for patient age, gender, education, marital status, health status, and length of the patient-physician relationship (mean [SE] PDM score, 58.0 [1.2] vs 60.6 [3.3]; P = .03). Ratings of minority and white physicians did not differ with respect to PDM style (adjusted mean [SE] PDM score for African Americans, 59.2 [1.7] vs whites, 61.7 [3.1]; P = .13). Patients in race-concordant relationships with their physicians rated their visits as significantly more participatory than patients in race-discordant relationships (difference [SE], 2.6 [1.1]; P = .02). Patients of female physicians had more participatory visits (adjusted mean [SE] PDM score for female, 62.4 [1.3] vs male, 59.5 [3.1]; P = .03), but gender concordance between physicians and patients was not significantly related to PDM score (unadjusted mean [SE] PDM score, 76.0 [1.0] for concordant vs 74.5 [0.9] for discordant; P = .12). Patient satisfaction was highly associated with PDM score within all race/ethnicity groups.
Our data suggest that African American patients rate their visits with physicians as less participatory than whites. However, patients seeing physicians of their own race rate their physicians' decision-making styles as more participatory. Improving cross-cultural communication between primary care physicians and patients and providing patients with access to a diverse group of physicians may lead to more patient involvement in care, higher levels of patient satisfaction, and better health outcomes.
A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking.
To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers.
Cross-sectional, stratified random national survey conducted in March-August 1999.
Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429).
Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups.
Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes.
Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality. JAMA. 2000;284:2476-2482.
To investigate differences in attitudes, preferences, and behaviors regarding end of life in terminally ill patients and their designated family caregivers.
68 African-American and white patients with stage III-B or IV lung or stage IV colon cancer and 68 patient-designated family caregivers interviewed between December 1999 and May 2001.
White patients were more likely to have a durable power of attorney (34% v 8%, P =.01) and were more likely to have a living will (LW; 41% v 11%, P =.004) than were African-American patients. More African-American than white patients desired the use of life-sustaining measures (cardiopulmonary resusitation [CPR], mechanical ventilation, tube feeding) in their current condition (all P >.12). In a near-death condition, African-American patients were more likely than white patients to desire each of the life-sustaining measures (all P <.004). There was no patient-caregiver agreement beyond chance regarding preferences for initiation of CPR, tube feeding, or mechanical ventilation in the patient's current condition or in the near-death condition. In the near-death condition in patients without LWs, there was disagreement in 46% of patient-caregiver pairs about CPR, in 50% about mechanical ventilation, and in 43% about tube feeding.
Although most patients and families endorse the primacy of the patient in decisions at end of life, the majority do not take supporting actions. Disagreements between patients and families about the use of life-sustaining measures in patients without LWs may result in patients' preferences being superseded at end of life.
African-American patients who visit physicians of the same race rate their medical visits as more satisfying and participatory than do those who see physicians of other races. Little research has investigated the communication process in race-concordant and race-discordant medical visits.
To compare patient-physician communication in race-concordant and race-discordant visits and examine whether communication behaviors explain differences in patient ratings of satisfaction and participatory decision making.
Cohort study with follow-up using previsit and postvisit surveys and audiotape analysis.
16 urban primary care practices.
252 adults (142 African-American patients and 110 white patients) receiving care from 31 physicians (of whom 18 were African-American and 13 were white).
Audiotape measures of patient-centeredness, patient ratings of physicians' participatory decision-making styles, and overall satisfaction.
Race-concordant visits were longer (2.15 minutes [95% CI, 0.60 to 3.71]) and had higher ratings of patient positive affect (0.55 point, [95% CI, 0.04 to 1.05]) compared with race-discordant visits. Patients in race-concordant visits were more satisfied and rated their physicians as more participatory (8.42 points [95% CI, 3.23 to 13.60]). Audiotape measures of patient-centered communication behaviors did not explain differences in participatory decision making or satisfaction between race-concordant and race-discordant visits.
Race-concordant visits are longer and characterized by more patient positive affect. Previous studies link similar communication findings to continuity of care. The association between race concordance and higher patient ratings of care is independent of patient-centered communication, suggesting that other factors, such as patient and physician attitudes, may mediate the relationship. Until more evidence is available regarding the mechanisms of this relationship and the effectiveness of intercultural communication skills programs, increasing ethnic diversity among physicians may be the most direct strategy to improve health care experiences for members of ethnic minority groups.
This project explored end-of-life care preferences and barriers among low-income, urban African Americans and Latino/Hispanic Americans (Latinos) to uncover factors that may influence hospice utilization.
Focus groups were conducted separately for African Americans (4 groups, n = 26) and Latinos (4 groups, n = 27). Transcripts were coded and analyzed using consensus and triangulation to identify primary themes.
Four preference themes and four barriers were identified. Results were largely similar across the two groups. Both preferred having families provide care for loved ones but expressed desire to reduce caretaker burden. Groups emphasized spirituality as the primary means of coping and valued the holistic well-being of the patient and family. Barriers reported were closely tied to access to care. Participants reported low hospice utilization because of lack of awareness of hospice and the prohibitive cost of health care. Latinos were more likely to report language barriers, while African Americans were more likely to report mistrust of the system.
African Americans and Latinos in this study were highly receptive to end-of-life care that would provide relief for patients and caregivers and emphasize spirituality and family consensus. Improving awareness of hospice services would likely increase utilization.
In 1997, the Institute of Medicine called for reform, improved quality and expanded research in end-of-life care. Yet little empirical information about preferences of African Americans has been documented. A community-campus partnership was formed to guide a needs assessment related to end-of-life care in a Southern, urban, African American community. This paper presents focus group findings related to end-of-life and palliative care.
A qualitative design of multiple-meeting focus groups was used to explore experiences, preferences, needs, and feelings expressed by family members with at least one relative who had died in a hospital (group 1) or at home (group 2). Sessions were taped and transcribed; themes were identified using systematic analytic procedures.
Thematic analysis revealed key concerns related to health care provider communications about end-of-life care and dying. Positive communications empowered and showed respect for patients and family members and recognized the importance of their spiritual beliefs; informed them about resources available to assist dying at home; and, for patients dying in the hospital, treated them with nurturing, compassion, and diligent monitoring of the patient's medical status and needs. Other themes related to end-of-life care issues include preparation, planning, and access. A table of quotes from participants is available from the corresponding author.
Findings suggest important clinical implications for clinicians and other health professionals. These voices from the community remind us of the heterogeneity in needs and preferences and challenge us to listen and tailor communication to each patient and their families.
Little guidance is available for health care providers who try to communicate with patients and their families in a culturally sensitive way about end-of-life care.
To explore the content and structure of end-of-life discussions that would optimize decision making by conducting focus groups with two diverse groups of patients that vary in ethnicity and socioeconomic status.
Six focus groups were conducted; 3 included non-Hispanic white patients recruited from a University hospital (non-Hispanic white groups) and 3 included African-American patients recruited from a municipal hospital (African-American groups). A hypothetical scenario of a dying relative was used to explore preferences for the content and structure of communication.
Thirty-six non-Hispanic white participants and 34 African-American participants.
Content analysis of focus group transcripts.
Non-Hispanic white participants were more exclusive when recommending family participants in end-of-life discussions while African-American participants preferred to include more family, friends and spiritual leaders. Requested content varied as non-Hispanic white participants desired more information about medical options and cost implications while African-American participants requested spiritually focused information. Underlying values also differed as non-Hispanic white participants expressed more concern with quality of life while African-American participants tended to value the protection of life at all costs.
The groups differed broadly in their preferences for both the content and structure of end-of-life discussions and on the values that influence those preferences. Further research is necessary to help practitioners engage in culturally sensitive end-of-life discussions with patients and their families by considering varying preferences for the goals of end-of-life care communication.
Important international differences exist in attitudes toward end-of-life issues in the intensive care unit.
A simple questionnaire survey was sent by e-mail to participants at an international meeting on intensive care medicine. Respondents were asked to choose 1 of 3 to 5 possible answers for each of 4 questions related to the treatment of a hypothetical patient in a vegetative state due to anoxic encephalopathy after cardiac arrest with no family and no advance directives.
From 3494 valid addresses, 1961 complete questionnaires (56%) were received from 21 countries. Sixty-two percent of physicians from Northern and Central Europe said they involved nurses in end-of-life discussions compared with only 32% of physicians in Southern Europe, 38% in Brazil, 39% in Japan, and 29% in the United States (P<.001 for all comparisons). Written do-not-resuscitate orders were preferred in Northern and Central Europe, whereas oral orders took preference in Southern Europe, Turkey, and Brazil. One third of Japanese physicians said that they would not apply do-not-resuscitate orders. Most participants from Japan, Turkey, the United States, Southern Europe, and Brazil chose to treat the hypothetical patient with antibiotics if he/she developed septic shock, whereas in Northern Europe, Central Europe, Canada, and Australia, terminal withdrawal of mechanical ventilation and extubation were the more commonly chosen responses.
In countries where intensive care medicine is relatively well developed, considerable differences remain in physicians' attitudes toward end-of-life care in the intensive care unit. Substantial work remains if an international consensus on these issues is to be reached.
We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research.
We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers.
Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directives. African Americans were consistently found to prefer the use of life support; Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups. Variations within groups existed and were related to cultural values, demographic characteristics, level of acculturation, and knowledge of end-of-life treatment options. Common methodological limitations of these studies were lack of theoretical framework, use of cross-sectional designs, convenience samples, and self-developed measurement scales.
Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.
Few studies have examined physician-family caregiver communication at the end of life, despite the important role families have in end-of-life care decisions. We examined family caregiver reports of physician communication about incurable illness, life expectancy, and hospice; the timing of these discussions; and subsequent family understanding of these issues.
Mixed methods study using a closed-ended survey of 206 family caregivers and open-ended, in-depth interviews with 12 additional family caregivers.
Two hundred eighteen primary family caregivers of patients with cancer enrolled with hospice between October 1999 and June 2002.
Family caregiver reports provided at the time of hospice enrollment of physician discussions of incurable illness, life expectancy, and hospice.
Many family caregivers reported that a physician never told them the patient's illness could not be cured (20.8%), never provided life expectancy (40% of those reportedly told illness was incurable), and never discussed using hospice (32.2%). Caregivers reported the first discussion of the illness being incurable and of hospice as a possibility occurred within 1 month of the patient's death in many cases (23.5% and 41.1%, respectively). In open-ended interviews, however, family caregivers expressed ambivalence about what they wanted to know, and their difficulty comprehending and accepting "bad news" was apparent in both qualitative and quantitative data.
Our findings suggest that ineffective communication about end-of-life issues likely results from both physician's lack of discussion and family caregiver's difficulty hearing the news. Future studies should examine strategies for optimal physician-family caregiver communication about incurable illness, so that families and patients can begin the physical, emotional, and spiritual work that can lead to acceptance of the irreversible condition.
End-of-life decisions are frequently made by patients' surrogates. Race and ethnicity may affect such decision making. Few studies have described how different racial/ethnic groups experience end-of-life surrogate decision making.
To describe the self-reported experience the self-reported experience of African-American, Caucasian, and Hispanic surrogate decision makers of seriously ill patients and to examine the relationship of race, ethnicity, and culture to that experience.
Purposive sample to include racial/ethnic minorities in a qualitative study using focus group interviews.
The participants of the study were 44 experienced, mostly female, surrogate decision makers for older veterans.
Transcripts were qualitatively analyzed to identify major themes, with particular attention to themes that might be unique to each of the three groups.
The experience of burden of end-of-life decision making was similar in all three groups. This burden in its medical, personal, and familial dimensions is compounded by uncertainty about prognosis and the patient's preferences. Racial/ethnic variations of responses to this burden concerned the physician-family relationship, religion and faith, and past experiences with race/ethnicity concordant versus non-concordant physicians.
Regardless of race/ethnicity, surrogates for seriously ill patients appeared to experience increased significant, multidimensional burdens of decision making under conditions of uncertainty about a patient's preferences. This aspect of the burden of surrogate decision making may not be fully appreciated by physicians. Physicians should identify and be especially attentive to strategies used by surrogates, which may vary by race/ethnicity, to reduce the uncertainty about a patient's preferences and thus the burden of surrogate decision making to assist them in this difficult process.
Context A clear understanding of what patients, families, and health care practitioners
view as important at the end of life is integral to the success of improving
care of dying patients. Empirical evidence defining such factors, however,
is lacking.
Objective To determine the factors considered important at the end of life by
patients, their families, physicians, and other care providers.
Design and Setting Cross-sectional, stratified random national survey conducted in March-August
1999.
Participants Seriously ill patients (n = 340), recently bereaved family (n = 332),
physicians (n = 361), and other care providers (nurses, social workers, chaplains,
and hospice volunteers; n = 429).
Main Outcome Measures Importance of 44 attributes of quality at the end of life (5-point scale)
and rankings of 9 major attributes, compared in the 4 groups.
Results Twenty-six items consistently were rated as being important (>70% responding
that item is important) across all 4 groups, including pain and symptom management,
preparation for death, achieving a sense of completion, decisions about treatment
preferences, and being treated as a "whole person." Eight items received strong
importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements
planned, not being a burden, helping others, and coming to peace with God.
Ten items had broad variation within as well as among the 4 groups, including
decisions about life-sustaining treatments, dying at home, and talking about
the meaning of death. Participants ranked freedom from pain most important
and dying at home least important among 9 major attributes.
Conclusions Although pain and symptom management, communication with one's physician,
preparation for death, and the opportunity to achieve a sense of completion
are important to most, other factors important to quality at the end of life
differ by role and by individual. Efforts to evaluate and improve patients'
and families' experiences at the end of life must account for diverse perceptions
of quality.
Background: Physicians can increase the rate of completion of advance directive forms by discussing directives with their patients, but the means by which physicians can be induced to initiate these discussions are unclear. Computer-generated reminders have been shown to increase physician compliance with practice guidelines. Objective: To determine the effects of computer-generated reminders to physicians on the frequency of advance directive discussions between patients and their primary caregivers and the frequency of consequent establishment of advance directives. Design: Randomized, controlled trial with a 2 x 2 factorial design. Setting: An outpatient general medicine practice associated with an urban public hospital. Participants: Participants were 1) 1009 patients who were at least 75 years of age or were at least 50 years of age with serious underlying disease and 2) 147 primary care physicians (108 housestaff and 39 faculty). Intervention: Computer-generated reminders that recommended discussion of one or both of two types of advance directives compared with no reminders. Measurements: Discussions about advance directives, determined by patient interviews after all scheduled patient-physician outpatient encounters, and completed advance directive forms. The study period was approximately 1 year. Results: Physicians who did not receive reminders (controls) discussed advance directives with 4% of the study patients compared with 24% for physicians who received both types of reminders (adjusted odds ratio, 7.7 [95% Cl, 3.4 to 18]; P < 0. 001). Physicians who did not receive reminders completed advance directive forms with only 4% of their study patients compared with 15% for physicians who received both types of reminders (adjusted odds ratio, 7.0 [Cl, 2.9 to 17]; P < 0.001). Overall, 45% of patients with whom advance directives were discussed completed at least one type of advance directive. Conclusions: Simple computer-generated reminders aimed at primary caregivers can increase the rates of discussion of advance directives and completion of advance directive forms among elderly outpatients with serious illnesses.
Background: African-American patients who visit physicians of the same race rate their medical visits as more satisfying and participatory than do those who see physicians of other races. Little research has investigated the communication process in race-concordant and race-discordant medical visits. Objectives: To compare patient-physician communication in race-concordant and race-discordant visits and examine whether communication behaviors explain differences in patient ratings of satisfaction and participatory decision making. Design: Cohort study with follow-up using previsit and postvisit surveys and audiotape analysis. Setting: 16 urban primary care practices. Patients: 252 adults (142 African-American patients and 110 white patients) receiving care from 31 physicians (of whom 18 were African-American and 13 were white). Measurements: Audiotape measures of patient-centeredness, patient ratings of physicians' participatory decision-making styles, and overall satisfaction. Results: Race-concordant visits were longer (2.15 minutes [95% Cl, 0.60 to 3.71]) and had higher ratings of patient positive affect (0.55 point, [95% Cl, 0.04 to 1.05]) compared with race-discordant visits. Patients in race-concordant visits were more satisfied and rated their physicians as more participatory (8.42 points [95% Cl, 3.23 to 13.60]). Audiotape measures of patient-centered communication behaviors did not explain differences in participatory decision making or satisfaction between race-concordant and race-discordant visits. Conclusions: Race-concordant visits are longer and characterized by more patient positive affect. Previous studies link similar communication findings to continuity of care. The association between race concordance and higher patient ratings of care is independent of patient-centered communication, suggesting that other factors, such as patient and physician attitudes, may mediate the relationship. Until more evidence is available regarding the mechanisms of this relationship and the effectiveness of intercultural communication skills programs, increasing ethnic diversity among physicians may be the most direct strategy to improve health care experiences for members of ethnic minority groups.
Objective.
—To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making.
Design.
—Survey.
Setting.
—Thirty-one senior citizen centers within Los Angeles County, California.
Respondents.
—A stratified quota sample of 200 subjects aged 65 years and older self-identified as being from each of four ethnic groups: European American, African American, Korean American, or Mexican American (N=800).
Main Outcome Measures and Results.
—Korean Americans (47%) and Mexican Americans (65%) were significantly less likely than European Americans (87%) and African Americans (88%) to believe that a patient should be told the diagnosis of metastatic cancer. Korean Americans (35%) and Mexican Americans (48%) were less likely than African Americans (63%) and European Americans (69%) to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-supporting technology (28% and 41% vs 60% and 65%). Instead, Korean Americans and Mexican Americans tended to believe that the family should make decisions about the use of life support. On stepwise multiple logistic regression, ethnicity was the primary factor related to attitudes toward truth telling and patient decision making.
Conclusions.
—Korean-American and Mexican-American subjects were more likely to hold a family-centered model of medical decision making rather than the patient autonomy model favored by most of the African-American and European-American subjects. This finding suggests that physicians should ask their patients if they wish to receive information and make decisions or if they prefer that their families handle such matters.(JAMA. 1995;274:820-825)
PART ONE: THE FOUNDATION Introduction to Analysis Critical Ingredients of Qualitative Analysis Analysis Principles of Particular Importance to Focus Group Research Analysis Considerations for Focus Group Research PART TWO: DOING ANALYSIS The Analysis Process Tools and Equipment for Making Analysis Easier Questions Focus Group Analysts Must Face Strategies Used by Experts Advice for First-Timers PART THREE: SHARING RESULTS Principles of Reporting Written Reports Oral Reports PART FOUR: POSTSCRIPT
OBJECTIVES: To assess whether older physicians have discussed their preferences for medical care at the end of life with their physicians, whether they have established an advance directive, and what life-sustaining treatment they wish in the event of incapacity to make these decisions for themselves.
DESIGN: Mailed survey to a cohort of physicians.
SETTING: Physicians who were medical students at the Johns Hopkins University in graduating classes from 1946 to 1964.
PARTICIPANTS: Physicians who completed the advance directive questionnaire (mean age 68).
MEASUREMENTS: Questionnaires were sent out to known surviving physicians of the Precursors Study, an on-going study that began in 1946, asking physicians about their preferences for life-sustaining treatments.
RESULTS: Of 999 physicians who were sent the survey, 765 (77%) responded. Forty-six percent of the physicians felt that their own doctors were unaware of their treatment preferences or were not sure, and of these respondents, 59% had no intention of discussing their wishes with their doctors within the next year. In contrast, 89% thought their families were probably or definitely aware of their preferences. Sixty-four percent reported that they had established an advance directive. Compared with physicians without advance directives, physicians who established an advance directive were more likely to believe that their doctors (odds ratio (OR) = 3.42, 95% confidence interval (CI) = 2.49–4.69) or family members (OR = 9.58, 95% CI = 5.33–17.23) were aware of their preferences for end-of-life care and were more likely to refuse treatments than those without advance directives.
CONCLUSION: This survey of physicians calls attention to the gap between preferences for medical care at the end of life and expressing wishes to others through discussion and advance directives, even among physicians.
Objective: To determine patient characteristics associated with the desire for life-sustaining treatments in the event of terminal illness.
Design: In-person survey from October 1986 to June 1988.
Setting: 13 internal medicine and family practices in North Carolina.
Patients: 2,536 patients (46% of those eligible) aged 65 years and older who were continuing care patients of participating practices, enrolled in Medicare. The patients were slightly older than the 65+ general population, 61% female, and 69% white, and most had one or more chronic illnesses.
Measurements and main results: The authors asked the patients whether they would want each of six different treatments (hospitalization, intensive care, cardiopulmonary resuscitation, surgery, artificial ventilation, or tube feeding) if they were to have a terminal illness. The authors combined responses into three categories ranging from the desire for more treatment to the desire for less treatment. After adjustment for other factors, 53% of women chose less treatment compared with 43% of men; 35%ofblacksvs 15% of whites and 23% of the less well educated vs 15% of the better educated expressed the desire for more treatment. High depression scores also were associated with the desire for more treatment (26% for depressed vs 18% for others).
Conclusion: Patients’ choices for care in the event of terminal illness relate to an intricate set of demographic, educational, and cultural factors. These results should not be used as a shortcut to determine patient preferences for care, but may provide new insights into the basis for patients’ preferences. In discussing choices for future life-sustaining care, physicians need to explore with each individual the basis for his or her choices.
Manual para la investigación cualitativa en ciencias sociales, en el que se presentan -paso a paso- técnicas para recoger, enfocar y analizar datos cualitativos.
Doctors in different countries have different approaches to bioethical problems. We studied how attitudes to life-sustaining treatment for terminally ill patients differ in Japan and the USA by administering a questionnaire to Japanese (136) and Japanese-American (77) physicians. In a series of clinical scenarios the questionnaire asked what life-sustaining interventions the doctors would recommend to a patient with metastatic gastric cancer. Most Japanese physicians would recommend blood transfusions for gastrointestinal bleeding (74%), total parenteral nutrition for malnutrition (67%), and vasopressors for life-threatening hypotension (61%) when the patient did not know of his diagnosis and outlook. Significantly fewer Japanese physicians would want these interventions for themselves: 29% would want transfusion, 36% would want total parenteral nutrition, and 25% would want vasopressors. 36% of Japanese physicians would override the explicit request of a competent moribund cancer patient to withdraw all life-support. By contrast, among Japanese-American physicians only 42% would recommend blood transfusions, 33% total parenteral nutrition, and 34% vasopressors to a terminally ill cancer patient who did not know of his diagnosis or outlook. Cross-cultural studies in medical ethics can help physicians and the public in different countries to take a fresh look at accepted practices and the ethical reasons behind them.
African-American (black) and white individuals have been shown to differ in their desire for life-sustaining treatments and their use of living wills for end-of-life care, but the reasons for these differences are unclear. This study was designed to test the hypothesis that these ethnic differences exist because black patients trust the health care system less, fear inadequate medical treatment more, and feel less confident that living wills can give them more control over their terminal care.
Cross-sectional, in-person survey conducted from November 1993 to June 1994.
Two medical oncology clinics with 40% to 50% black patient representation.
Ambulatory cancer patients, 92 black and 114 white, who were awaiting their physician visits and agreed to participate (76% of those eligible). Patients were excluded if they were under age 40 or if they had nonmelanoma skin cancer only.
Black ambulatory cancer patients wanted more life-sustaining treatments (odds ratio [OR] 2.8; 95% confidence interval [CI] 1.4-5.3), and were less likely to want to complete a living will at some time in the future (OR 0.36; 95% CI 0.17-0.75) than were white patients after controlling for socioeconomic variables. However, these differences were not related to lack of trust or fear of inadequate medical treatment in this study population. Both groups of patients trusted the health care system and felt that physicians treated patients equally well. Neither group feared inadequate or excessive medical care, and the majority of both groups agreed that living wills would help them keep control over their terminal care.
Black and white cancer patients make different end-of-life choices, even after adjusting for likely explanatory variables. The other factors that influence decision making remain unclear and need to be further explored if physicians are to understand and help their patients make choices for end-of-life care.
Both physicians and patients view advance directives as important, yet discussions occur infrequently. We assessed differences and correlations between physicians' and their patients' desires for end-of-life care for themselves.
Study physicians (n = 78) were residents and faculty practicing in an inner-city, academic primary care general internal medicine practice. Patients (n = 831) received primary care from these physicians and were either at least 75 or between 50 and 74 years of age, with selected morbid conditions. Physicians and patients completed identical questionnaires that included an assessment of their preferences for six specific treatments if they were terminally ill. There were significant differences between physicians' and patients' preferences for all six treatments (p < .0001), with physicians wanting less treatment than their patients for five of them. Patients desiring more care (p < .01) were more often male (odds ratio [OR] 1.7). African-American (OR 1.6), and older (OR 1.02 per year). There were no such correlates with physicians' preferences. A treatment preference score was calculated from respondents' desires to receive or refuse the six treatments. Physicians' scores were highly correlated with those of their enrolled primary care patients (r = .51, p < .0001).
Although patients and physicians as groups differ substantially in their preferences for end-of-life care, there was significant correlation between individual academic physicians' preferences and those of their primary care patients. Reasons for this correlation are unknown.
Understanding the challenges faced by family members involved in decisions about the use of life-sustaining treatment for incompetent patients in the ICU is necessary for developing empirically based supportive interventions.
To describe and explain the experiences of family members who were involved in decisions on behalf of their loved ones in order to promote understanding of such experiences and to suggest areas for effective, supportive intervention.
The grounded-theory method of qualitative research was used. Data collection involved semistructured interviews of 17 persons who had been involved in decisions about the use of life-sustaining treatment for a family member in the ICU.
Family members discussed the need to arrive at a judgment of the patient's condition and to work with caregivers to have the family member's decision about life-sustaining treatment enacted. Data analysis suggests that clinicians can best support family members by helping the members arrive at a judgment about the patient's condition and treatment desires and by connecting with the family members to ensure that treatment goals are mutual. Supporting family members in this way helps them accept and go on in a positive way after the experience.
Family members of patients in the ICU are willing and able to take responsibility for decisions about the use of life-sustaining treatment for their loved ones. The long-term acceptance of the experience and the decisions made depends greatly on the interactions between the family member who makes the decision and nurses and physicians in the clinical setting.
Physicians can increase the rate of completion of advance directive forms by discussing directives with their patients, but the means by which physicians can be induced to initiate these discussions are unclear. Computer-generated reminders have been shown to increase physician compliance with practice guidelines.
To determine the effects of computer-generated reminders to physicians on the frequency of advance directive discussions between patients and their primary caregivers and the frequency of consequent establishment of advance directives.
Randomized, controlled trial with a 2 x 2 factorial design.
An outpatient general medicine practice associated with an urban public hospital.
Participants were 1) 1009 patients who were at least 75 years of age or were at least 50 years of age with serious underlying disease and 2) 147 primary care physicians (108 housestaff and 39 faculty).
Computer-generated reminders that recommended discussion of one or both of two types of advance directives compared with no reminders.
Discussions about advance directives, determined by patient interviews after all scheduled patient-physician outpatient encounters, and completed advance directive forms. The study period was approximately 1 year.
Physicians who did not receive reminders (controls) discussed advance directives with 4% of the study patients compared with 24% for physicians who received both types of reminders (adjusted odds ratio, 7.7 [95% CI, 3.4 to 18]; P < 0.001). Physicians who did not receive reminders completed advance directive forms with only 4% of their study patients compared with 15% for physicians who received both types of reminders (adjusted odds ratio, 7.0 [CI, 2.9 to 17]; P < 0.001). Overall, 45% of patients with whom advance directives were discussed completed at least one type of advance directive.
Simple computer-generated reminders aimed at primary caregivers can increase the rates of discussion of advance directives and completion of advance directive forms among elderly outpatients with serious illnesses.
This paper provides an overview of ethical issues in obstetrics and gynecology. We first define two basic ethical principles, beneficence and respect for autonomy. We first apply these principles to gynecologic practice, emphasizing the role of informed consent. We then apply these principles to obstetric practice, utilizing the concept of the fetus as a patient and identifying its clinical implications for directive versus non-directive counseling for fetal benefit. (C) 1997 Elsevier Science ireland Ltd.
Patients from racial and ethnic minority groups use fewer health care services and are less satisfied with their care than patients from the majority white population. These disparities may be attributable in part to racial or cultural differences between patients and their physicians.
To determine whether racial concordance between patients and physicians affects patients' satisfaction with and use of health care.
We analyzed data from the 1994 Commonwealth Fund's Minority Health Survey, a nationwide, telephone survey of noninstitutionalized adults. For the 2201 white, black, and Hispanic respondents who reported having a regular physician, we examined the association between patient-physician racial concordance and patients' ratings of their physicians, satisfaction with health care, reported receipt of preventive care, and reported receipt of needed medical care.
Black respondents with black physicians were more likely than those with nonblack physicians to rate their physicians as excellent (adjusted odds ratio [OR], 2.40; 95% confidence interval [CI], 1.55-3.72) and to report receiving preventive care (adjusted OR, 1.74; 95% CI, 1.01-2.98) and all needed medical care (adjusted OR, 2.94; 95% CI, 1.10-7.87) during the previous year. Hispanics with Hispanic physicians were more likely than those with non-Hispanic physicians to be very satisfied with their health care overall (adjusted OR, 1.74; 95% CI, 1.01-2.99).
Our findings confirm the importance of racial and cultural factors in the patient-physician relationship and reaffirm the role of black and Hispanic physicians in caring for black and Hispanic patients. Improving cultural competence among physicians may enhance the quality of health care for minority populations. In the meantime, by reducing the number of underrepresented minorities entering the US physician workforce, the reversal of affirmative action policies may adversely affect the delivery of health care to black and Hispanic Americans.
To examine factors associated with family satisfaction with end-of-life care in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).
A prospective cohort study with patients randomized to either usual care or an intervention that included clinical nurse specialists to assist in symptom control and facilitation of communication and decision-making.
Five teaching hospitals in the United States.
Family members and other surrogate respondents for 767 seriously ill hospitalized adults who died.
Eight questionnaire items regarding satisfaction with the patient's medical care expressed as two scores, one measuring satisfaction with patient comfort and the other measuring satisfaction with communication and decision-making.
Sixteen percent of respondents reported dissatisfaction with patient comfort and 30% reported dissatisfaction with communication and decision-making. Factors found to be significantly associated with satisfaction with communication and decision-making were hospital site, whether death occurred during the index hospitalization (adjusted odds ratio (AOR) 2.2, 95% CI, 1.3-3.9), and for patients who died following discharge, whether the patient received the SUPPORT intervention (AOR 2.0, 1.2-3.2). For satisfaction with comfort, male surrogates reported less satisfaction (0.6, 0.4-1.0), surrogates who reported patients' preferences were followed moderately to not at all had less satisfaction (0.2, 0.1-0.4), and surrogates who reported the patient's illness had greater effect on family finances had less satisfaction (0.4, 0.2-0.8).
Satisfaction scores suggest the need for improvement in end-of-life care, especially in communication and decision making. Further research is needed to understand how factors affect satisfaction with end-of-life care. An intervention like that used in SUPPORT may help family members.
To identify differences in advanced care planning and end-of-life decision-making between whites and blacks aged 70 and older.
The Asset and Health Dynamics Among the Oldest Old (AHEAD) study is a nationally representative survey of adults who were aged 70 and older in 1993. Relatives (proxy respondents) for 540 persons who died between the first (1993) and second (1995) waves of the study were surveyed about advanced care planning and end-of-life decisions that were made for their family member who died.
Respondents were interviewed at home by telephone (n = 444) or in person (n = 95).
The 540 proxy respondents included 454 whites and 86 blacks.
Questions were asked about advance care planning and end-of-life decisions.
Whites were significantly more likely than blacks to discuss treatment preferences before death (P = .002), to complete a living will (P = .001), and to designate a Durable Power of Attorney for Health Care (DPAHC) (P = .032). The treatment decisions for whites were more likely to involve limiting care in certain situations (P = .007) and withholding treatment before death (P = .034). In contrast, the treatment decisions for blacks were more likely to be based on the desire to provide all care possible in order to prolong life (P = .013). Logistic regression models revealed that race continued to be a significant predictor of advance care planning and treatment decisions even after controlling for sociodemographic factors.
These findings suggest that there are important differences between blacks and whites regarding advanced care planning and end-of-life decision-making. Health professionals need to understand the diverse array of end-of-life preferences among various racial and ethnic groups and to develop greater awareness and sensitivity to these preferences when helping patients with end-of-life decision-making.
To identify critical psychosocial supports and areas of conflict for families of intensive care unit (ICU) patients during decisions to withdraw or withhold life-sustaining treatment.
Cross-sectional survey.
Six intensive care units in a tertiary care academic medical center.
Forty-eight family members, one per case, of patients previously hospitalized in the ICU who had been considered for withdrawal or withholding of life-sustaining treatment.
None.
Two raters coded transcripts of audiotaped interviews with family members about their experiences in the ICU and the decision-making process for withdrawing or withholding life-sustaining treatment. Codes identified sources of conflict and personal, institutional, and staff supports on which families relied during the decision-making process. Forty-six percent of respondents perceived conflict during their family member's ICU stay; the vast majority of conflicts were between themselves and the medical staff and involved communication or perceived unprofessional behavior (such as disregarding the primary caregiver in treatment discussions). Sixty-three percent of family members previously had spoken with the patient about his or her end-of-life treatment preferences, which helped to lessen the burden of the treatment decision. Forty-eight percent of family members reported the reassuring presence of clergy, and 27% commented on the need for improved physical space to have family discussion and conferences with physicians. Forty-eight percent of family members singled out their attending physician as the preferred source of information and reassurance.
Many families perceived conflict during end-of-life treatment discussions in the ICU. Conflicts centered on communication and behavior of staff. Families identified pastoral care and prior discussion of treatment preferences as sources of psychosocial support during these discussions. Families sought comfort in the identification and contact of a "doctor-in-charge." ICU policies such as family conference rooms and lenient visitation accommodate families during end-of-life decision-making.
With a national trend toward less aggressive treatment of hospitalized terminally ill patients, families increasingly participate in decisions to withdraw life-sustaining treatment. Although prior research indicates decision making is stressful for families, there have been no psychometric reports of actual stress levels and few discussions of the reasoning used by families compared to clinicians in reaching the decision.
The purpose of this study was to assess levels of family stress associated with decisions to withdraw life-sustaining treatments, to assess factors that affected stress, and to compare families and clinicians on their reasoning about the decision.
Data were collected from hospital decedent charts, family members of decedents, and clinicians who cared for decedents. Data from families were collected in individual interviews, shortly after decedent death and 6 months later, using psychometric measures and semi-structured interview questions. Clinicians were interviewed once shortly following patient death.
Family stress associated with the withdraw decision was high immediately following the death of the decedent and, while it decreased over time, remained high a half a year later. Several factors affected stress; most notably, stress was highest in the absence of patient advance directives. In reaching the decision, both families and clinicians prioritized what the patient would want, although families, more strongly than clinicians, endorsed doing everything medically possible to prolong the patient's life.
Findings add compelling evidence for the power of advance directives, whether written or verbal, to reduce the stress associated with family decision-making.
Ethnicity has been found to explain some differences across ethnic groups regarding end-of-life care choices. African Americans appear to be less likely to know about advance directives and to complete them. Five community-based focus groups, consisting of 27 African Americans, were convened to explore their perspectives of end-of-life care planning and decision making. Content analysis revealed six themes: death is not an option, religiosity and end-of-life care planning is a paradox, the health care system is a microcosm of societal and historical events, a "trusted" family member or friend is the contract for life-and-death options, ethnically relevant initiatives are essential to increase advance directives participation, and people are people. These themes serve to guide health care professionals in minimizing actions that increase African Americans' mistrust of the health care system not only in end-of-life situations but also in all of health care-related interactions.
Culture may have an important impact on a patient's decision whether to perform advance care planning. But the cultural attitudes influencing such decisions are poorly defined. This hypothesis-generating study begins to characterize those attitudes in 3 American ethnic cultures.
Structured, open-ended interviews with blinded content analysis.
Two general medicine wards in San Antonio, Texas.
Purposive sampling of 26 Mexican-American, 18 Euro-American, and 14 African-American inpatients.
The 3 groups shared some views, potentially reflecting elements of an American core culture. For example, majorities of all groups believed "the patient deserves a say in treatment," and "advance directives (ADs) improve the chances a patient's wishes will be followed." But the groups differed on other themes, likely reflecting specific ethnic cultures. For example, most Mexican Americans believed "the health system controls treatment," trusted the system "to serve patients well," believed ADs "help staff know or implement a patient's wishes," and wanted "to die when treatment is futile." Few Euro Americans believed "the system controls treatment," but most trusted the system "to serve patients well," had particular wishes about life support, other care, and acceptable outcomes, and believed ADs "help staff know or implement a patient's wishes." Most African Americans believed "the health system controls treatment," few trusted the system "to serve patients well," and most believed they should "wait until very sick to express treatment wishes."
While grounded in values that may compose part of American core culture, advance care planning may need tailoring to a patient's specific ethnic views.
Although more than 125 million North Americans have one or more chronic conditions, medical training may not adequately prepare physicians to care for them. The authors evaluated physicians' perceptions of the adequacy of their chronic illness care training to and the effects of training on their attitudes toward care of persons with chronic conditions.
In November 2000 through June 2001, the authors surveyed by telephone a random sample of U.S. physicians who had > or =20 hours of patient contact per week. The interview instrument examined demographics, career satisfaction, practice characteristics, perceived adequacy of chronic illness care training in ten competencies (geriatric syndromes, chronic pain, nutrition, developmental milestones, end-of-life care, psychosocial issues, patient education, assessment of caregiver needs, coordination of services, and interdisciplinary teamwork), and effect of training on attitudes toward chronic illness care.
Of 1,905 eligible physicians, 1,236 (65%) responded (270 family or general practitioners, 231 internists, 129 pediatricians, 335 nonsurgical specialists, and 271 surgeons). Most physicians reported their chronic disease training was less than adequate for all ten competencies. Family practitioners were more likely (p <.05) to report adequate training in seven competencies compared with internists, and in two to four competencies when compared with pediatricians, nonsurgical specialists, or surgeons. Most physicians reported that training had a positive effect on attitudes toward care of people with chronic conditions, including the ability to make a difference in their lives (74-84%).
Physicians perceived their medical training for chronic illness care was inadequate. Medical schools and residencies may need to modify curricula to better prepare physicians to treat the growing number of people with chronic conditions.
The need for better care for terminally ill patients led us to create an educational program to provide internal medicine residents and medical oncology fellows basic competency in palliative and end-of-life care.
An interdisciplinary team identified educational strategies, course objectives, content, and evaluation instruments.
Our strategy is to use a required Web-based course to establish a knowledge base upon which specific training during clinical rotations build skills. Field testing of the Web course showed it was an effective tool for delivering clinically applicable content. Skill building experiences are now being integrated into selected clinical rotations.
Spirituality is an important part of African‐American culture and is often cited as an explanation for the more‐aggressive treatment preferences of some African Americans at the end of life. This paper reviews the literature on spiritual beliefs that may influence the treatment decisions of African Americans.
Medline 1966 to February 2003, Psych Info 1872 to February 2003, and CINAHL 1982 to February 2003 were searched for studies exploring spiritual beliefs that may influence the treatment preferences of African Americans. All candidate papers were examined for quality, and data were extracted on study population, design, analysis, and results to identify recurrent themes. Forty studies met inclusion criteria.
Recurrent themes describing spiritual beliefs that may influence the treatment preferences of African Americans throughout the course of illness include the following: spiritual beliefs and practices are a source of comfort, coping, and support and are the most effective way to influence healing; God is responsible for physical and spiritual health; and the doctor is God's instrument.
Spiritual beliefs specifically addressing treatment preferences at the end of life include: only God has power to decide life and death, there are religious prohibitions against physician‐assisted death or advance directives limiting life‐sustaining treatments, and divine intervention and miracles occur.
For some African Americans, spiritual beliefs are important in understanding and coping with illness and may provide a framework within which treatment decisions are made. Given the growing ethnic diversity of the United States, some understanding of the complexities of culture and spirituality is essential for healthcare providers.
Medical schools require time for end-of-life topic. However, there is very little medical literature that directly addresses how medical students and residents are to behave, manage emotion, and confront their own grieving process when patients die.
The purpose of this study was to understand how preclinical medical students describe feelings toward the death of a hypothetical patient in order to affect curricular change at our institution.
Qualitative methods using narrative analysis of student papers to identify patterns, core constructs, and themes related to student's projected feelings on patient death.
Federal medical school with volunteer medical students from the class of 2005.
Two thirds of the students (108/162) volunteered to participate. Five significant themes emerged including: (1) affective responses (guilt, fear, blame, impotence), (2) personal experience with death, (3) survivorship and professionalism, (4) the meaning of death, and (5) the affects of religion and spirituality. Many feared facing families and responding to grief. An active belief in an afterlife was mentioned as a coping strategy by 40% of the students.
End-of-life curriculum is more than teaching about the clinical care of the patient and support of family. These medical students overwhelmingly identified the need for coping strategies when confronting the dying patient. Teaching students these coping strategies should be an integral part of an end-of-life curriculum. Writing exercises cannot only help students recognize and reflect upon their emotions and feelings, but also allow educators a window into curricular elements that need to be added to death and dying education.
To compare the end-of-life medical care experienced by African-American and white decedents and their families.
Cross-sectional, retrospective survey with weighted results based on a two-stage probability sampling design.
Hospitals, nursing homes, and home-based medical services across the United States.
Surrogates (N=1,447; primarily family members) for decedents from 22 states.
Validated end-of-life care outcomes concerning symptom management, decision-making, informing and supporting families, individualized care, coordination, service utilization, and financial impact.
Family members of African-American decedents were less likely than those of white decedents to rate the care received as excellent or very good (odds ratio (OR)=0.4). They were more likely to report absent (OR=2.4) or problematic (OR=1.9) physician communication, concerns with being informed (OR=2.5), and concerns with family support (OR=2.6). Family members of African Americans were less likely than those of whites to report that the decedent had treatment wishes (OR=0.3) or written advance care planning documents (OR=0.4). These differences persist when limiting the sample to respondents whose expectations for life-sustaining treatments matched treatments received. Family members of African-American decedents also were more likely to report financial hardship due to savings depletion (OR=2.1) or difficulty paying for care (OR=2.0) and that family/friends (OR=2.0) or home health workers (OR=1.9) provided home care.
This national study brings evidence that racial disparities persist into end-of-life care, particularly regarding communication and family needs. Results also suggest different home care patterns and levels of financial impact.
This study investigated racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Ten focus groups and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants, including Arab Muslims, Arab Christians, Hispanics, blacks, and whites. The mean age±standard deviation was 67±8.5 (range 50–83). A focus group screener was used to recruit participants. A moderator discussion guide was used to guide the focus groups. A take-home questionnaire asked about demographic information and end-of-life issues.
Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient “bad news.” Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these groups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative medicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women spoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying.
As the population becomes more diverse and continues to age, it will be important to provide culturally and sex-sensitive end-of-life interventions to increase patient/family satisfaction and allocate resources appropriately.
To describe physicians' end-of-life practices, perceptions regarding end-of-life care and characterize differences based upon physician specialty and demographic characteristics. To illuminate physicians' perceptions about differences among their African-American and Caucasian patients' preferences for end-of-life care.
Twenty-four African-American and 16 Caucasian physicians (N=40) participated in an in-person interview including 23 primary care physicians, 7 cardiologists, and 10 oncologists. Twenty-four practices were in urban areas and 16 were in rural counties.
Physicians perceived racial differences in preferences for end-of-life care between their Caucasian and African-American patients. Whereas oncologists and primary care physicians overwhelmingly reported having working relationships with hospice, only 57% of cardiologists reported having those contacts. African-American physicians were more likely than Caucasian physicians to perceive racial differences in their patients preferences for pain medication.
Demographic factors such as race of physician and patient may impact the provider's perspective on end-of-life care including processes of care and communication with patients.
To characterize how surrogates plan to make medical decisions for others.
Descriptive study using semistructured qualitative interviews.
Surrogates were interviewed by telephone from their homes.
Fifty experienced surrogate decision-makers identified to make decisions for older, chronically ill veterans.
Surrogates were asked to describe advance care planning conversations with loved ones and how they planned to make future medical decisions. Thematic content analysis was used to identify bases for decision-making.
Surrogates described the motivators and the content of advance care planning conversations with loved ones. Surrogates described five bases for decision-making: (1) conversations (making decisions based on their knowledge of their loved ones' preferences), (2) relying on documents (referring to their loved ones' advance care directives), (3) shared experience (believing an "inner sense" would guide decisions because of shared lived experience with loved ones), (4) surrogates' own values and preferences about life, and (5) surrogates' network (enlisting the help of others).
Although ethicists and clinicians expect surrogates to use substituted judgment or patients' best interests when making decisions, these data indicate that many surrogates rely on other factors such as their own best interests or mutual interests of themselves and the patient or intend to base substituted judgments on documents with which they have little familiarity.
Federal Interagency Forum on Aging related statistics
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. Federal Interagency Forum on Aging related statistics. Government Printing Office; Washington DC, U.S.: 2008. Older Americans 2008: Key Indicators of Well-Being.
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- Welch Lc
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. Welch LC, Teno JM, Mor V. End-of-Life Care in Black and White: Race Matters for Medical Care of Dying Patients and their Families. J Am Geriatr Soc 2005;53(7):1145–1153. [PubMed: 16108932] [18]. Vig EK, Taylor JS, Starks H, Hopley EK, Fryer-Edwards K. Beyond substituted judgment: how surrogates navigate end-of-life decisionmaking. J Am Geriatr Soc 2006;54:1688–93. [PubMed: 17087695]
Federal Interagency Forum on Aging related statistics Government Printing Office
Federal Interagency Forum on Aging related statistics. Government Printing Office; Washington DC,
U.S.: 2008. Older Americans 2008: Key Indicators of Well-Being.