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Use of a values inventory as a discussion aid about end-of-life care: A pilot randomized controlled trial
Abstract
Objective:
We examined the utility of a brief values inventory as a discussion aid to elicit patients' values and goals for end-of-life (EoL) care during audiotaped outpatient physician-patient encounters.
Method:
Participants were seriously ill male outpatients (n = 120) at a large urban Veterans Affairs medical center. We conducted a pilot randomized controlled trial, randomizing 60 patients to either the intervention (with the values inventory) or usual care. We used descriptive statistics and qualitative methods to analyze the data. We coded any EoL discussions and recorded the length of such discussions.
Results:
A total of 8 patients (13%) in the control group and 13 (23%) in the intervention group had EoL discussions with a physician (p = 0.77). All EoL discussions in the control group were initiated by the physician, compared with only five (38%) in the intervention group. Because most EoL discussions took place toward the end of the encounter, discussions were usually brief.
Significance of results:
The outpatient setting has been promoted as a better place for discussing EoL care than a hospital during an acute hospitalization for a chronic serious illness. However, the low effectiveness of our intervention calls into question the feasibility of discussing EoL care during a single outpatient visit. Allowing extra time or an extra visit for EoL discussions might increase the efficacy of advance care planning.
... 13,30 A major barrier to successful SDM may be the clinicians' ability to elicit and recognise patient values, and integrate them into advice, conversations and decisions about treatment preferences and outcomes. Values, goals and preferences have been identified for patient groups 11,[31][32][33][34] and lay people 35 in various contexts, including end-oflife care, 11,12,36 consumer decision aids, 38 advance care planning, 33,38,39 GOC decisions,2,5,33,40 integrative health care 41 and ICU settings. ...
Objective: Examine values, preferences and goals elicited by doctors following goals-of-care (GOC) discussions with critically ill patients who had life-limiting illnesses. Design: Descriptive qualitative study using four-stage latent content analysis. Setting: Tertiary intensive care unit (ICU) in South Western Victoria. Participants: Adults who had life-limiting illnesses and were admitted to the ICU with documented GOC, between October 2016 and July 2018. Intervention: The iValidate program, a shared decision-making clinical communication education and clinical support program, for all ICU registrars in August 2015. Main outcome measures: Matrix of themes and subthemes categorised into values, preferences and goals. Results: A total of 354 GOC forms were analysed from 218 patients who had life-limiting illnesses and were admitted to the ICU. In the categories of values, preferences and goals, four themes were identified: connectedness and relational autonomy, autonomy of decision maker, balancing quality and quantity of life, and physical comfort. The subthemes — relationships, sense of place, enjoyment of activities, independence, dignity, cognitive function, quality of life, longevity and physical comfort — provided a matrix of issues identified as important to patients. Relationship, place, independence and physical comfort statements were most frequently identified; longevity was least frequently identified. Conclusion: Our analysis of GOC discussions between medical staff and patients who had life-limiting illnesses and were admitted to the ICU, using a shared decision-making training and support program, revealed a framework of values, preferences and goals that could provide a structure to assist clinicians to engage in shared decision making.
Advance care planning (ACP) supports individuals in aligning their medical care with personal values and preferences in the face of serious illness. The variety of ACP tools available reflects diverse strategies intended to facilitate these critical conversations, yet evaluations of their effectiveness often show mixed results. Following the Arskey and O’Malley framework, this scoping review aims to synthesize the range of ACP tools targeted at patients and families, highlighting their characteristics and delivery methods to better understand their impact and development over time. Studies included focused on patient-facing ACP tools across all settings and mediums. Exclusions were applied to studies solely targeting healthcare providers or those only aiming at completion of advance directives without broader ACP discussions. Searches were conducted across PubMed, Embase, CINAHL, The Cochrane Library, and Web of Science. Data were extracted using a predesigned spreadsheet, capturing study population, setting, intervention modality, and intervention theme. Tools were categorized by delivery method and further analyzed through a year-wise distribution to track trends and developments. We identified 99 unique patient-facing tools, with those focusing on counseling (31) and video technologies (21) being the most prevalent while others incorporated online platforms, print materials, games, or some combination of different delivery methods. Over half the tools were designed for specific patient groups, especially for various diseases and racial or ethnic communities. Recent years showed a surge in tool variety and innovation, including integrated patient portals and psychological techniques. The review demonstrates a broad array of innovative ACP tools that facilitate personalized and effective ACP. Our findings contribute to an enhanced understanding of their utilization and potential impacts, offering valuable insights for future tool development and policy making in ACP.
Background:
Communication about end of life (EoL) and EoL care is critically important for providing quality care as people approach death. Such communication is often complex and involves many people (patients, family members, carers, health professionals). How best to communicate with people in the period approaching death is not known, but is an important question for quality of care at EoL worldwide. This review fills a gap in the evidence on interpersonal communication (between people and health professionals) in the last year of life, focusing on interventions to improve interpersonal communication and patient, family member and carer outcomes.
Objectives:
To assess the effects of interventions designed to improve verbal interpersonal communication about EoL care between health practitioners and people affected by EoL.
Search methods:
We searched CENTRAL, MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018, without language or date restrictions. We contacted authors of included studies and experts and searched reference lists to identify relevant papers. We searched grey literature sources, conference proceedings, and clinical trials registries in September 2019. Database searches were re-run in June 2021 and potentially relevant studies listed as awaiting classification or ongoing.
Selection criteria:
This review assessed the effects of interventions, evaluated in randomised and quasi-randomised trials, intended to enhance interpersonal communication about EoL care between patients expected to die within 12 months, their family members and carers, and health practitioners involved in their care. Patients of any age from birth, in any setting or care context (e.g. acute catastrophic injury, chronic illness), and all health professionals involved in their care were eligible. All communication interventions were eligible, as long as they included interpersonal interaction(s) between patients and family members or carers and health professionals. Interventions could be simple or complex, with one or more communication aims (e.g. to inform, skill, engage, support). Effects were sought on outcomes for patients, family and carers, health professionals and health systems, including adverse (unintended) effects. To ensure this review's focus was maintained on interpersonal communication in the last 12 months of life, we excluded studies that addressed specific decisions, shared or otherwise, and the tools involved in such decision-making. We also excluded studies focused on advance care planning (ACP) reporting ACP uptake or completion as the primary outcome. Finally, we excluded studies of communication skills training for health professionals unless patient outcomes were reported as primary outcomes.
Data collection and analysis:
Standard Cochrane methods were used, including dual review author study selection, data extraction and quality assessment of the included studies.
Main results:
Eight trials were included. All assessed intervention effects compared with usual care. Certainty of the evidence was low or very low. All outcomes were downgraded for indirectness based on the review's purpose, and many were downgraded for imprecision and/or inconsistency. Certainty was not commonly downgraded for methodological limitations. A summary of the review's findings is as follows. Knowledge and understanding (four studies, low-certainty evidence; one study without usable data): interventions to improve communication (e.g. question prompt list, with or without patient and physician training) may have little or no effect on knowledge of illness and prognosis, or information needs and preferences, although studies were small and measures used varied across trials. Evaluation of the communication (six studies measuring several constructs (communication quality, patient-centredness, involvement preferences, doctor-patient relationship, satisfaction with consultation), most low-certainty evidence): across constructs there may be minimal or no effects of interventions to improve EoL communication, and there is uncertainty about effects of interventions such as a patient-specific feedback sheet on quality of communication. Discussions of EoL or EoL care (six studies measuring selected outcomes, low- or very low-certainty evidence): a family conference intervention may increase duration of EoL discussions in an intensive care unit (ICU) setting, while use of a structured serious illness conversation guide may lead to earlier discussions of EoL and EoL care (each assessed by one study). We are uncertain about effects on occurrence of discussions and question asking in consultations, and there may be little or no effect on content of communication in consultations. Adverse outcomes or unintended effects (limited evidence): there is insufficient evidence to determine whether there are adverse outcomes associated with communication interventions (e.g. question prompt list, family conference, structured discussions) for EoL and EoL care. Patient and/or carer anxiety was reported by three studies, but judged as confounded. No other unintended consequences, or worsening of desired outcomes, were reported. Patient/carer quality of life (four studies, low-certainty evidence; two without useable data): interventions to improve communication may have little or no effect on quality of life. Health practitioner outcomes (three studies, low-certainty evidence; two without usable data): interventions to improve communication may have little or no effect on health practitioner outcomes (satisfaction with communication during consultation; one study); effects on other outcomes (knowledge, preparedness to communicate) are unknown. Health systems impacts: communication interventions (e.g. structured EoL conversations) may have little or no effect on carer or clinician ratings of quality of EoL care (satisfaction with care, symptom management, comfort assessment, quality of care) (three studies, low-certainty evidence), or on patients' self-rated care and illness, or numbers of care goals met (one study, low-certainty evidence). Communication interventions (e.g. question prompt list alone or with nurse-led communication skills training) may slightly increase mean consultation length (two studies), but other health service impacts (e.g. hospital admissions) are unclear.
Authors' conclusions:
Findings of this review are inconclusive for practice. Future research might contribute meaningfully by seeking to fill gaps for populations not yet studied in trials; and to develop responsive outcome measures with which to better assess the effects of communication on the range of people involved in EoL communication episodes. Mixed methods and/or qualitative research may contribute usefully to better understand the complex interplay between different parties involved in communication, and to inform development of more effective interventions and appropriate outcome measures. Co-design of such interventions and outcomes, involving the full range of people affected by EoL communication and care, should be a key underpinning principle for future research in this area.
Background:
People with heart failure report various symptoms and show a trajectory of periodic exacerbations and recoveries, where each exacerbation event may lead to death. Current clinical practice guidelines indicate the importance of discussing future care strategies with people with heart failure. Advance care planning (ACP) is the process of discussing an individual's future care plan according to their values and preferences, and involves the person with heart failure, their family members or surrogate decision-makers, and healthcare providers. Although it is shown that ACP may improve discussion about end-of-life care and documentation of an individual's preferences, the effects of ACP for people with heart failure are uncertain.
Objectives:
To assess the effects of advance care planning (ACP) in people with heart failure compared to usual care strategies that do not have any components promoting ACP.
Search methods:
We searched CENTRAL, MEDLINE, Embase, CINAHL, Social Work Abstracts, and two clinical trials registers in October 2019. We checked the reference lists of included studies. There were no restrictions on language or publication status.
Selection criteria:
We included randomised controlled trials (RCTs) that compared ACP with usual care in people with heart failure. Trials could have parallel group, cluster-randomised, or cross-over designs. We included interventions that implemented ACP, such as discussing and considering values, wishes, life goals, and preferences for future medical care. The study participants comprised adults (18 years of age or older) with heart failure.
Data collection and analysis:
Two review authors independently extracted outcome data from the included studies, and assessed their risk of bias. We contacted trial authors when we needed to obtain missing information.
Main results:
We included nine RCTs (1242 participants and 426 surrogate decision-makers) in this review. The meta-analysis included seven studies (876 participants). Participants' mean ages ranged from 62 to 82 years, and 53% to 100% of the studies' participants were men. All included studies took place in the US or the UK. Only one study reported concordance between participants' preferences and end-of-life care, and it enrolled people with heart failure or renal disease. Owing to one study with small sample size, the effects of ACP on concordance between participants' preferences and end-of-life care were uncertain (risk ratio (RR) 1.19, 95% confidence interval (CI) 0.91 to 1.55; participants = 110; studies = 1; very low-quality evidence). It corresponded to an assumed risk of 625 per 1000 participants receiving usual care and a corresponding risk of 744 per 1000 (95% CI 569 to 969) for ACP. There was no evidence of a difference in quality of life between groups (standardised mean difference (SMD) 0.06, 95% CI -0.26 to 0.38; participants = 156; studies = 3; low-quality evidence). However, one study, which was not included in the meta-analysis, showed that the quality of life score improved by 14.86 points in the ACP group compared with 11.80 points in the usual care group. Completion of documentation by medical staff regarding discussions with participants about ACP processes may have increased (RR 1.68. 95% CI 1.23 to 2.29; participants = 92; studies = 2; low-quality evidence). This corresponded to an assumed risk of 489 per 1000 participants with usual care and a corresponding risk of 822 per 1000 (95% CI 602 to 1000) for ACP. One study, which was not included in the meta-analysis, also showed that ACP helped to improve documentation of the ACP process (hazard ratio (HR) 2.87, 95% CI 1.09 to 7.59; participants = 232). Three studies reported that implementation of ACP led to an improvement of participants' depression (SMD -0.58, 95% CI -0.82 to -0.34; participants = 278; studies = 3; low-quality evidence). We were uncertain about the effects of ACP on the quality of communication when compared to the usual care group (MD -0.40, 95% CI -1.61 to 0.81; participants = 9; studies = 1; very low-quality evidence). We also noted an increase in all-cause mortality in the ACP group (RR 1.32, 95% CI 1.04 to 1.67; participants = 795; studies = 5). The studies did not report participants' satisfaction with care/treatment and caregivers' satisfaction with care/treatment.
Authors' conclusions:
ACP may help to increase documentation by medical staff regarding discussions with participants about ACP processes, and may improve an individual's depression. However, the quality of the evidence about these outcomes was low. The quality of the evidence for each outcome was low to very low due to the small number of studies and participants included in this review. Additionally, the follow-up periods and types of ACP intervention were varied. Therefore, further studies are needed to explore the effects of ACP that consider these differences carefully.
Inadequate communication about serious illness care preferences affects patients, families, health care providers, and health care systems. Many patient and system barriers prevent comprehensive serious illness communication. The purpose of this evidence-based practice project was to provide a structure within a primary care clinic to facilitate conversations with seriously ill individuals about their care preferences that (a) was adaptable to clinic workflow, (b) improved providers' perception of the care conversation experience, (c) improved documentation of care preferences, and (d) provided a comfortable and helpful experience. The Johns Hopkins Nursing Evidence-Based Practice model and Serious Illness Care Program were used to address provider and system barriers to conversations about care preferences. Program interventions included training providers and staff; identifying patients at risk for high symptom burden and mortality; integrating system interventions; and evaluating outcomes. Providers completed training, after which a 5-week pilot practice change was conducted. Provider perceptions of conversations after implementation were positive. During the pilot, 3 serious illness care conversations were initiated with additional patients prepared for future conversations using an information sheet and introduction to the conversation.
Objectives:
We examined anticipated preferences for end-of-life (EOL) care in healthy older adults in the context of various terminal disease scenarios to explore the relationship between personal values and diseases and conditions that would influence EOL care choices.
Methods:
Qualitative Descriptive Analysis was used to derive themes and the relationship between EOL preference themes and personal value themes in 365 respondents in a national sample of healthy older adults who completed a survey on their anticipated preferences for end-of-life (EOL) care.
Results:
Reluctance to burden close others was the most frequently voiced personal value across all conditions affecting EOL preferences, followed by the personal value of quality of life. Concern about whether one's wishes would be honored was more commonly voiced in the context of hypothetical, prospective terminal cancer than in neurological conditions. Respondents who voiced desire for autonomy in how they would die clearly attributed extreme pain as the primary influence on EOL preferences.
Conclusions:
Comprehensive assessment of patient personal values should include consideration of particular chronic disease scenarios and death trajectories to fully inform EoL preferences.
Clinical implications:
Because personal values do influence EOL preferences, care should be taken to ascertain patient values when presenting diagnoses, prognoses, and treatment options. In particular, patients and families of patients with progressive neurological diseases will likely face a time when the patient cannot self-represent EOL wishes. Early discussion of values and preferences, particularly in the context of cognitive disease is vital to assure patient-directed care.
Introduction:
In the United States, 73% of deaths occur among people aged 65 years or older. Although most would prefer to die at home after a short illness, most actually die in institutions after prolonged declines. Despite this discrepancy, elders and their adult children often do not discuss end-of-life preferences. Use of advance directives has not been widespread, and people often avoid the subject until a crisis. This project focused on informal family communication about end-of-life preparation and preferences, about which little is known.
Methods:
In May 2006, we conducted in-depth exploratory interviews with 15 older adults about their end-of-life preparation and preferences and with 15 younger adults about their parents' end-of-life preparation and preferences. The interview included an item rating the depth of discussion.
Results:
Participants in both groups were primarily female and white. Mean age of older adults was 78.6 years (range, 70-88 years). Mean age of younger adults was 53.1 years (range, 42-63 years); mean age of their parents was 82.6 years (range, 68-99 years). Nine older adults reported discussing end-of-life preparation and preferences with their adult children; six had barely discussed the topic at all. Ten younger adults reported having talked with their parents about end-of-life preparation and preferences; five had not discussed it. Barriers to discussions about end-of-life preparation and preferences were fear of death, trust in others to make decisions, family dynamics, and uncertainty about preferences. Facilitators for discussion were acceptance of the reality of death, prior experience with death, religion or spirituality, and a desire to help the family. Successful strategies included casually approaching the topic and writing down end-of-life preparation and preferences.
Conclusion:
Knowing the obstacles to and facilitators for discussion can help health care and public health professionals target approaches to encouraging elders and their families to discuss end-of-life preparation and preferences before a crisis.
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.
Background:
Clinicians and patients find prognosis and end-of-life care discussions challenging. Misunderstanding one's prognosis can contribute to poor decision-making and end-of-life quality of life. A question prompt list (booklet of questions patients can ask clinicians) targeting these issues may help overcome communication barriers. None exists for end-of-life discussions outside the palliative care setting.
Aim:
To develop/pilot a question prompt list facilitating discussion/planning of end-of-life care for oncology patients with advanced cancer from Australia and the United States and to explore acceptability, perceived benefits/challenges of using the question prompt list, suggestions for improvements and the necessity of country-specific adaptations.
Design:
An expert panel developed a question prompt list targeting prognosis and end-of-life issues. Australian/US semi-structured interviews and one focus group elicited feedback about the question prompt list. Transcribed data were analysed using qualitative methods.
Setting/participants:
Thirty-four patients with advanced cancer (15 Australian/19 US) and 13 health professionals treating such patients (7 Australian/6 US) from two Australian and one US cancer centre participated.
Results:
Most endorsed the entire question prompt list, though a minority queried the utility/appropriateness of some questions. Analysis identified four global themes: (1) reinforcement of known benefits of question prompt lists, (2) appraisal of content and suggestions for further developments, (3) perceived benefits and challenges in using the question prompt list and (4) contrasts in Australian/US feedback. These contrasts necessitated distinct Australian/US final versions of the question prompt list.
Conclusions:
Participants endorsed the question prompt list as acceptable and useful. Feedback resulted in two distinct versions of the question prompt list, accommodating differences between Australian and US approaches to end-of-life discussions, highlighting the appropriateness of tailoring communication aides to individual populations.
PURPOSEDecision making regarding cardiopulmonary resuscitation (CPR) is challenging. This study examined the effect of a video decision support tool on CPR preferences among patients with advanced cancer. PATIENTS AND METHODS
We performed a randomized controlled trial of 150 patients with advanced cancer from four oncology centers. Participants in the control arm (n = 80) listened to a verbal narrative describing CPR and the likelihood of successful resuscitation. Participants in the intervention arm (n = 70) listened to the identical narrative and viewed a 3-minute video depicting a patient on a ventilator and CPR being performed on a simulated patient. The primary outcome was participants' preference for or against CPR measured immediately after exposure to either modality. Secondary outcomes were participants' knowledge of CPR (score range of 0 to 4, with higher score indicating more knowledge) and comfort with video.ResultsThe mean age of participants was 62 years (standard deviation, 11 years); 49% were women, 44% were African American or Latino, and 47% had lung or colon cancer. After the verbal narrative, in the control arm, 38 participants (48%) wanted CPR, 41 (51%) wanted no CPR, and one (1%) was uncertain. In contrast, in the intervention arm, 14 participants (20%) wanted CPR, 55 (79%) wanted no CPR, and 1 (1%) was uncertain (unadjusted odds ratio, 3.5; 95% CI, 1.7 to 7.2; P <.001). Mean knowledge scores were higher in the intervention arm than in the control arm (3.3 ± 1.0 v 2.6 ± 1.3, respectively; P <.001), and 65 participants (93%) in the intervention arm were comfortable watching the video. CONCLUSION
Participants with advanced cancer who viewed a video of CPR were less likely to opt for CPR than those who listened to a verbal narrative.
Purpose of the study:
I examine whether 5 aspects of a significant other's death quality (pain, decision-making capacity, location, problems with end-of life care, and preparation) affect whether one does advance care planning (ACP). I also identify specific aspects of others' deaths that respondents say triggered their own planning.
Design and methods:
Data are from the New Jersey End of Life study, a survey of 305 adults age 55+ seeking care at 2 major New Jersey medical centers. I estimate multivariate logistic regression models for a subsample of 253 participants who recently lost a loved one and provide descriptive findings from an open-ended question regarding the motivation for one's ACP.
Results:
Multivariate analyses revealed "positive" role model effects; persons who witnessed significant others' deaths that occurred at home, were free of problems associated with end-of-life care, and where advance directives were used are more likely to make end-of-life preparations. Open-ended data showed that 19% cited others' deaths as the main trigger for their own planning, with most citing negative factors (pain, connection to machines, coma) that they hoped to avoid.
Implications:
Practitioners should encourage patients to use conversations about others' deaths as springboards for discussions about one's own end-of-life care, and to engage in ACP together with family. Implications for health care reform are highlighted.
Congenital heart disease (CHD) is a chronic illness. Few adults with CHD are cured and those with disease of moderate or great complexity remain at risk of premature death. Current adult CHD guidelines recommend that providers encourage their patients to complete advance directives. We evaluated the prevalence of completed advance directives by and the preference for information about life expectancy of outpatients at a large adult CHD program. Two hundred patients with CHD (52% men, 35 ± 15 years old, range 18 to 79, 81% with disease of moderate or great complexity) completed a survey that assessed knowledge of advance directives and nature of and preferences for advance care planning. Only 5% of patients reported that they had completed advance directives; 56% had never heard of them. However, most patients (87%) reported that they would prefer to have an advance directive available if they were dealing with their own dying and were unable to speak for themselves. Patients who had formally identified substitute decision makers (n = 34) were typically older (47 ± 16 vs 33 ± 13 years, p <0.001) and more likely to have partners (30% vs 6%, p <0.001). Most patients (70%) reported that they wanted general information about the average life expectancy for patients with their heart condition. In conclusion, in contrast to recommendations from published guidelines, advance care planning documents are infrequently completed by outpatients. Health care providers caring for patients with CHD should educate their patients about advance directives and assist them in preparing formal end-of-life-planning documents.
To investigate how involvement preferences of patients with breast cancer change during the treatment decision-making process and determine the impact of meeting patients' expectations on decision-making outcomes.
Participants were 683 patients with breast cancer from 62 oncologists in five different countries recruited to an International Breast Cancer Study Group (IBCSG 33-03) project. Questionnaires elicited patients' pre- and postconsultation preferences for involvement in treatment decision making and whether these were met or not. Decision-related outcomes were assessed postconsultation.
Before the consultation, most patients preferred shared or patient-directed treatment decision making. After the consultation, 43% of patients' preferences changed, and most shifted toward patient-directed decisions. The actual postconsultation decision was more likely to be made according to postconsultation rather than preconsultation preferences. Compared with patients who were less involved than they had hoped to be, patients who were as involved as they had hoped to be or were even more involved in decision making had significantly better decision-related outcomes. This was true regardless of whether preference change occurred.
Many patients with early-stage breast cancer have treatment options and approach treatment decisions with a desire for decisional control, which may increase after their consultation. Patients' ultimate involvement preferences were more likely to be consistent with the way the decision was actually made, suggesting that patients need to feel concordance between their preference and the actual decision. Patients who directed decisions, even if more than they hoped for, fared better on all decision-related outcomes. These results emphasize the need for oncologists to endorse and facilitate patient participation in treatment decision making.
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.
To investigate the impact of advance care planning on end of life care in elderly patients.
Prospective randomised controlled trial.
Single centre study in a university hospital in Melbourne, Australia.
309 legally competent medical inpatients aged 80 or more and followed for six months or until death.
Participants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes.
The primary outcome was whether a patient's end of life wishes were known and respected. Other outcomes included patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died.
154 of the 309 patients were randomised to advance care planning, 125 (81%) received advance care planning, and 108 (84%) expressed wishes or appointed a surrogate, or both. Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; P<0.001). In the intervention group, family members of patients who died had significantly less stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients. Patient and family satisfaction was higher in the intervention group.
Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives. Trial registration Australian New Zealand clinical trials registry ACTRN12608000539336.
Physicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences.
This was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians.
Preferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P = .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 patients; v 66%, 127 of 191 patients; P = .003). However, some patients who were aware they were terminally ill wished to receive life-extending care (17%, 21 of 121 patients). Patients who reported having discussed their wishes for EOL care with a physician (39%, 125 of 322 patients) were more likely to receive care that was consistent with their preferences, both in the full sample (odds ratio [OR] = 2.26; P < .0001) and among patients who were aware they were terminally ill (OR = 3.94; P = .0005). Among patients who received no life-extending measures, physical distress was lower (mean score, 3.1 v 4.1; P = .03) among patients for whom such care was consistent with preferences.
Patients with cancer are more likely to receive EOL care that is consistent with their preferences when they have had the opportunity to discuss their wishes for EOL care with a physician.
Many terminally ill patients enroll in hospice only in the final days before death or not at all. Discussing hospice with a health care provider could increase awareness of hospice and possibly result in earlier use.
We used data on 1517 patients diagnosed as having stage IV lung cancer from a multiregional study. We estimated logistic regression models for the probability that a patient discussed hospice with a physician or other health care provider before an interview 4 to 7 months after diagnosis as reported by either the patient or surrogate or documented in the medical record.
Half (53%) of the patients had discussed hospice with a provider. Patients who were black, Hispanic, non-English speaking, married or living with a partner, Medicaid beneficiaries, or had received chemotherapy were less likely to have discussed hospice. Only 53% of individuals who died within 2 months after the interview had discussed hospice, and rates were lower among those who lived longer. Patients who reported that they expected to live less than 2 years had much higher rates of discussion than those expecting to live longer. Patients reporting the most severe pain or dyspnea were no more likely to have discussed hospice than those reporting less severe or no symptoms. A third of patients who reported discussing do-not-resuscitate preferences with a physician had also discussed hospice.
Many patients diagnosed as having metastatic lung cancer had not discussed hospice with a provider within 4 to 7 months after diagnosis. Increased communication with physicians could address patients' lack of awareness about hospice and misunderstandings about prognosis.
Life-sustaining medical care of patients with advanced cancer at the end of life (EOL) is costly. Patient-physician discussions about EOL wishes are associated with lower rates of intensive interventions.
Funded by the National Institute of Mental Health and the National Cancer Institute, Coping With Cancer is a longitudinal multi-institutional study of 627 patients with advanced cancer. Patients were interviewed at baseline and were followed up through death. Costs for intensive care unit and hospital stays, hospice care, and life-sustaining procedures (eg, mechanical ventilator use and resuscitation) received in the last week of life were aggregated. Generalized linear models were applied to test for cost differences in EOL care. Propensity score matching was used to reduce selection biases.
Of 603 participants, 188 (31.2%) reported EOL discussions at baseline. After propensity score matching, the remaining 415 patients did not differ in sociodemographic characteristics, recruitment sites, illness acknowledgment, or treatment preferences. Further analyses, adjusted by quintiles of propensity scores and significant confounders, revealed that the mean (SE) aggregate costs of care (in 2008 US dollars) were $1876 ($177) for patients who reported EOL discussions compared with $2917 ($285) for patients who did not, a cost difference of $1041 (35.7% lower among patients who reported EOL discussions) (P =.002). Patients with higher costs had worse quality of death in their final week (Pearson production moment correlation partial r = -0.17, P =.006).
Patients with advanced cancer who reported having EOL conversations with physicians had significantly lower health care costs in their final week of life. Higher costs were associated with worse quality of death.
Autonomous decision making by patients can be enhanced by a variety of advance directives. These directives, the living will and the durable power of attorney, have an ethical and legal basis on which the patient can prospectively make decisions about life-sustaining therapies. The strength of these directives can be enhanced by the use of the Values History, serving as an adjunct to them. The Values History can also be used as a clinical tool to elicit the values of the patient as they pertain to chronic as well as critical medical care. Documentation of the patient's values will give the health care team a fuller understanding of the patient's preferences and directions.
This investigation of patients with early breast cancer examined relationships among patient involvement in deciding treatment (i.e., whether to undergo breast removal or breast conservation), perceptions of control over treatment decisions, and subsequent health-related quality of life. It was predicted 1) that patients who more actively participated in consultations to decide treatment would perceive more decision control than would more passive patients and 2) that patients who perceived greater decision control would report better health-related quality of life following treatment than would patients perceiving less decision control. Sixty patients with stage I or II breast cancer allowed their consultations with surgeons to be audiorecorded. Following these visits, patients reported on their involvement in the consultation, optimism for the future, knowledge about treatment, and two aspects of perceived decision control, the perception of having a choice for treatment and the extent to which the doctor or patient was responsible for the decision. Six and 12 months postoperatively, 51 patients (85%) returned a follow-up survey assessing perceived decision control and health-related quality of life. The first prediction received some support. The patients who had more actively participated in their consultations, particularly in terms of offering opinions, assumed more responsibility for treatment decisions during the year following surgery than did less expressive patients. Also, the patients who reported more involvement in their consultations later believed they had had more of a choice for treatment. The second hypothesis was partially supported. Six and 12 months following treatment, the patients who believed they were more responsible for treatment decisions and believed they had more choice of treatment reported higher levels of quality of life than did the patients who perceived themselves to have less decision control. However, perceived control at the time of treatment did not predict later quality of life. Theoretical and clinical implications are discussed.
To discover and explore the factors that result in the "false optimism about recovery" observed in patients with small cell lung cancer.
A qualitative observational (ethnographic) study in 2 stages over 4 years.
Lung diseases ward and outpatient clinic in a university hospital in the Netherlands.
35 patients with small cell lung cancer.
False optimism about recovery usually developed during the first course of chemotherapy and was most prevalent when the cancer could no longer be seen on x-ray films. This optimism tended to vanish when the tumor recurred, but it could develop again, though to a lesser extent, during further courses of chemotherapy. Patients gradually found out the facts about their poor prognosis, partly by their physical deterioration and partly through contact with fellow patients in a more advanced stage of the illness who were dying. False optimism about recovery was the result of an association between physicians' activism and patients' adherence to the treatment calendar and to the "recovery plot," which allowed them to avoid acknowledging explicitly what they should and could know. The physician did and did not want to pronounce a "death sentence," and the patient did and did not want to hear it.
Solutions to the problem of collusion between physician and patient require an active, patient-oriented approach by the physician. Perhaps solutions have to be found outside the physician-patient relationship itself--for example, by involving "treatment brokers."
Improved communication with family members of critically ill patients can decrease the prolongation of dying in the intensive care unit (ICU), but few data exist to guide the conduct of this communication.
Our objective was to identify missed opportunities for physicians to provide support for or information to family during family conferences.
We identified ICU family conferences in four hospitals that included discussions about withdrawing life support or delivery of bad news. Fifty-one conferences were audiotaped, including 214 family members. Thirty-six physicians led the conferences and some physicians led more than one. We used qualitative methods to identify and categorize missed opportunities, defined as an occurrence when the physician had an opportunity to provide support or information to the family and did not.
Fifteen family conferences (29%) had missed opportunities identified. These fell into three categories: opportunities to listen and respond to family; opportunities to acknowledge and address emotions; and opportunities to pursue key principles of medical ethics and palliative care, including exploration of patient preferences, explanation of surrogate decision making, and affirmation of nonabandonment. The most commonly missed opportunities were those to listen and respond, but examples from other categories suggest value in being aware of these opportunities.
Identification of missed opportunities during ICU family conferences provides suggestions for improving communication during these conferences. Future studies are needed to demonstrate whether addressing these opportunities will improve quality of care.
Advance care planning (ACP) aims to guide health care in the event of decisional incapacity. Interventions to promote ACP have had limited effectiveness. We conducted an educational and motivational intervention in Department of Veterans Affairs outpatient clinics to increase ACP use and proxy and health care provider understanding of patients' preferences and values.
We recruited 23 providers and up to 14 of each of their patients; the patients were randomized to the control or intervention group. Eligibility criteria included a preexisting relationship with the provider, age 55 years or older, chronic health condition(s), and no recorded advance directive. The intervention group (n = 119) received an ACP workbook, motivational counseling by social workers, and cues to providers to discuss ACP. The control group (n = 129) received an advance directive booklet.
The intervention patients reported more ACP discussions with their providers (64% vs 38%; P<.001). Living wills were filed in the medical record twice as often in the intervention group (48% vs 23%; P<.001). Provider-patient dyads in the intervention group had higher agreement scores than the control group for treatment preferences, values, and personal beliefs (58% vs 48%, 57% vs 46%, and 61% vs 47%, respectively; P<.01 for all comparisons). The agreement scores for the proxy-patient dyads did not differ between groups for treatment preferences and values, but were higher in the intervention than the control group for personal beliefs (67% vs 56%).
This intervention demonstrates mixed results and highlights the ongoing challenges of helping health care providers and potential proxy decision makers represent patient preferences and values.
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.
To determine whether provision of a question prompt list (QPL) influences advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a palliative care (PC) physician.
This randomized controlled trial included patients randomly assigned to standard consultation or provision of QPL before consultation, with endorsement of the QPL by the physician during the consultation. Consecutive eligible patients with advanced cancer referred to 15 PC physicians from nine Australian PC services were invited to participate. Consultations were audiotaped, transcribed, and analyzed by blinded coders; patients completed questionnaires before, within 24 hours, and 3 weeks after the consultation.
A total of 174 patients participated (92 QPL, 82 control). Compared with controls, QPL patients and caregivers asked twice as many questions (for patients, ratio, 2.3; 95% CI, 1.7 to 3.2; P < .0001), and patients discussed 23% more issues covered by the QPL (95% CI, 11% to 37%; P < .0001). QPL patients asked more prognostic questions (ratio, 2.3; 95% CI, 1.3 to 4.0; P = .004) and discussed more prognostic (ratio, 1.43; 95% CI, 1.1 to 1.8, P = .003) and end-of-life issues (30% v 10%; P = .001). Fewer QPL patients had unmet information needs about the future (21 = 4.14; P = .04), which was the area of greatest unmet information need. QPL consultations (average, 38 minutes) were longer (P = .002) than controls (average, 31 minutes). No differences between groups were observed in anxiety or patient/physician satisfaction.
Providing a QPL and physician endorsement of its use assists terminally ill cancer patients and their caregivers to ask questions and promotes discussion about prognosis and end-of-life issues, without creating patient anxiety or impairing satisfaction.
Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life.
(1) To formulate guidance and recommendations for improving end-of-life care in CHF; (2) to generate data on patients' and carers' preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end-of-life issues.
Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III-IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians.
A tertiary hospital in London, UK.
Patients and families reported a wide range of end-of-life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease- and specialism-specific barriers to improving end-of-life care were identified.
The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end-of-life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.
Few studies have assessed the efficacy of communication skills training for postgraduate physician trainees at the level of behaviors. We designed a residential communication skills workshop (Oncotalk) for medical oncology fellows. The intervention design built on existing successful models by teaching specific communication tasks linked to the patient's trajectory of illness. This study evaluated the efficacy of Oncotalk in changing observable communication behaviors.
Oncotalk was a 4-day residential workshop emphasizing skills practice in small groups. This preintervention and postintervention cohort study involved 115 medical oncology fellows from 62 different institutions during a 3-year study. The primary outcomes were observable participant communication skills measured during standardized patient encounters before and after the workshop in giving bad news and discussing transitions to palliative care. The standardized patient encounters were audiorecorded and assessed by blinded coders using a validated coding system. Before-after comparisons were made using each participant as his or her own control.
Compared with preworkshop standardized patient encounters, postworkshop encounters showed that participants acquired a mean of 5.4 bad news skills (P<.001) and a mean of 4.4 transitions skills (P<.001). Most changes in individual skills were substantial; for example, in the bad news encounter, 16% of participants used the word "cancer" when giving bad news before the workshop, and 54% used it after the workshop (P<.001). Also in the bad news encounter, blinded coders were able to identify whether a standardized patient encounter occurred before or after the workshop in 91% of the audiorecordings.
Oncotalk represents a successful teaching model for improving communication skills for postgraduate medical trainees.
Patients face difficult decisions about chemotherapy near the end of life. Such treatment might prolong survival or reduce symptoms but cause adverse effects, prevent the patient from engaging in meaningful life review and preparing for death, and preclude entry into hospice. Palliative care and oncology clinicians should be logical partners in caring for patients with serious cancers for which symptom control, medically appropriate goal setting, and communication are paramount, but some studies have shown limited cooperation. We illustrate how clinicians involved in palliative care and oncology can more effectively work together with the story of Mr L, a previously healthy 56-year-old man, who wanted to survive his lung cancer at all costs. He lived 14 months with 3 types of chemotherapy, received chemotherapy just 6 days before his death, and resisted entering hospice until his prognosis and options were explicitly communicated. Approaches to communication about prognosis and treatment options and questions that patients may want to ask are discussed.
To have a better understanding of our patients' knowledge of advance directive planning and execution, as well as communication with their oncologists regarding their wishes, we conducted a survey on our inpatient hematology-oncology services. A total of 68 unique hospitalized patients with a diagnosis of cancer completed surveys. Surveys were given to all oncology patients regardless of their reason for admission. Overall, 29% of the patients reported having had a discussion with their oncologist regarding their wishes if they became seriously ill or near death. Of those who did have this conversation, the majority said that they, rather than their physician, initiated it. Although the vast majority of patients (97%) knew what a living will was, only 54% had one in place. Twenty patients had a discussion with their oncologist, and 14 of them (70%) had a living will. This percentage was higher than in the group that did not have a conversation with their physician (48%; 23 of 48 patients), but the difference was not statistically significant. Most cancer patients admitted to an inpatient oncology unit either did not have or did not recall having a discussion with their oncologist regarding end-of-life issues. This study gives us a baseline of information in evaluating future interventions directed to improve the quality of patient-physician communication regarding end-of-life planning.
Care of patients with chronic illness such as congestive heart failure and chronic obstructive pulmonary disease accounts for a large part of primary care practice. End-of-life planning is an important part of the care of these patients and should begin early in the progression of the disease. This case outlines the development of a comprehensive end-of-life plan in early, worsening, and end-stage disease.
Do-not-resuscitate (DNR) orders have been in use in hospitals nationwide for over 20 years. Nonetheless, as currently implemented, they fail to adequately fulfill their two intended purposes--to support patient autonomy and to prevent non-beneficial interventions. These failures lead to serious consequences. Patients are deprived of the opportunity to make informed decisions regarding resuscitation, and CPR is performed on patients who would have wanted it withheld or are harmed by the procedure. This article highlights the persistent problems with today's use of inpatient DNR orders, i.e., DNR discussions do not occur frequently enough and occur too late in the course of patients' illnesses to allow their participation in resuscitation decisions. Furthermore, many physicians fail to provide adequate information to allow patients or surrogates to make informed decisions and inappropriately extrapolate DNR orders to limit other treatments. Because these failings are primarily due to systemic factors that result in deficient physician behaviors, we propose strategies to target these factors including changing the hospital culture, reforming hospital policies on DNR discussions, mandating provider communication skills training, and using financial incentives. These strategies could help overcome existing barriers to proper DNR discussions and align the use of DNR orders closer to their intended purposes of supporting patient self-determination and avoiding non-beneficial interventions at the end of life.
This study attempted to test the plausibility of engaging frail nursing home residents in advance care planning (ACP).
Advance care planning fosters communication among individuals, family and health professionals regarding end-of-life care. Yet, such practice seldom takes place in a timely fashion because of its sensitive nature; thus, the concerns of these residents are often left unattended.
This was a one-year quasi-experimental study to test the feasibility of the Let Me Talk ACP programme, with its design being inspired by literature and our earlier work, among frail nursing home residents.
Three assessments were conducted at six-month intervals to monitor the programme effects. The storytelling approach, which allowed participants to thread together their past, present and future, was the key feature of the programme.
Findings showed that the treatment preference stability was significantly higher in the intervention group (κ = 0.53, p ≤ 0.001). Significantly more participants in this group also communicated their treatment preferences to their family or caregivers (p = 0.012), with an odds ratio of 4.52. The programme also had a positive effect on mitigating participants' existential distress.
The programme was found effective in clarifying participants' treatment preferences and encouraging them to communicate their preferences to significant others. However, it was also found that involving participants' family in open discussion remained difficult. Extensive promotion in the community is therefore necessary.
It is recommended that such ACP programmes should be integrated into nursing home care practice, as they can be initiated in a relaxed atmosphere and maintained as an ongoing process. The trusting relationship between the nurse in the homes and the residents enables in-depth discussion. The nurse is also well placed to play the facilitator role in guiding the process, providing information and mediating the family discussion.
Advanced care plans provide an opportunity for patient choice and self-determination. This article describes the process, outcome and impact of the introduction of an advanced care plan into community and inpatient settings. It demonstrates the usefulness of the tool, and the way in which it improves the chances of people dying in their preferred place of care, particularly when used in the community. It also illustrates the effect on nursing practice of improved patient, family and professional communication, and through that, patient empowerment. It confirms the benefits of integrating evaluation into new initiatives, which facilitates useful feedback to stakeholders.
To explore whether models of health behavior change can help to inform interventions for advance care planning (ACP).
Qualitative cross-sectional study.
Community.
Sixty-three community-dwelling persons aged 65 and older and 30 caregivers with experience as surrogate decision-makers.
In focus groups conducted separately with older persons and caregivers, participants were asked to discuss ways they had planned for future declines in health and why they had or had not engaged in such planning. Transcripts were analyzed using grounded theory.
Four themes illustrated the potential of applying models of health behavior change to improve ACP. (1) Participants demonstrated variable readiness to engage in ACP and could be in different stages of readiness for different components of ACP, including consideration of treatment goals, completion of advance directives, and communication with families and physicians. (2) Participants identified a wide range of benefits of and barriers to ACP. (3) Participants used a variety of processes of change to progress through stages of readiness, and ACP was only one of a broader set of behaviors that participants engaged in to prepare for declines in their health or for death. (4) Experience with healthcare decision-making for loved ones was a strong influence on perceptions of susceptibility and engagement in ACP.
The variability in participants' readiness, barriers and benefits, perceptions of susceptibility, and use of processes to increase readiness for participating in each component of ACP suggests the utility of customized, stage-specific interventions based on individualized assessments to improve ACP.
Little is known about the emotional impact of physician-initiated advance directive discussions.
One hundred ambulatory patients aged 65 years and older were randomly assigned to receive either a physician-initiated discussion of advance directive choices of a discussion of health promotion issues. Prediscussion, immediate postdiscussion, and 1-week postdiscussion measures of positive and negative affect were measured for both groups.
Neither discussion topic resulted in adverse emotional or attitudinal responses. Only the advance directive participants showed positive affective and attitudinal responses to the discussion, including an increase in positive affect, an increased sense of physician-patient understanding, and increased thought and discussion about life-support issues in the week following the discussion. For those participants receiving the advance directive discussion, longer physician-patient relationships and higher educational levels significantly predicted a more positive affective response. Lower scores on indices of mental and physical health and a stronger belief that physicians should discuss advance directive issues significantly predicted a more negative affective response to the advance directive discussion.
Physicians should anticipate positive emotional responses when they initiate advance directive discussions with their elderly outpatients. Advance directive discussions will be received most positively by patients who enjoy good psychological and physical health and when initiated in the context of an established physician-patient relationship.
Patients and physicians do not adequately discuss patients' preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.
Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.
Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.
Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.
Background:
Discussions of end-of-life care should be held prior to acute, disabling events. Many barriers to having such discussions during primary care exist. These barriers include time constraints, communication difficulties, and perhaps physicians' anxiety that patients might react negatively to such discussions.
Objective:
To assess the impact of discussions of advance directives on patients' satisfaction with their primary care physicians and outpatient visits.
Design:
Prospective cohort study of patients enrolled in a randomized, controlled trial of the use of computers to remind primary care physicians to discuss advance directives with their elderly, chronically ill patients.
Setting:
Academic primary care general internal medicine practice affiliated with an urban teaching hospital.
Participants:
Six hundred eighty-six patients who were at least 75 years old, or at least 50 years old with serious underlying disease, and their 87 primary care physicians (57 residents, 30 faculty general internists) participated in the study.
Measurements and main results:
We assessed patients' satisfaction with their primary care physicians and visits via interviews held in the waiting room after completed visits. Controlling for satisfaction at enrollment and physician, patient, and visit factors, discussing advance directives was associated with greater satisfaction with the physician (P =.052). At follow-up, the strongest predictor of satisfaction with the primary care visit was having previously discussed advance directives with that physician (P =.004), with a trend towards greater visit satisfaction when discussions were held during that visit (P =.069). The percentage of patients scoring a visit as "excellent" increased from 34% for visits without prior advance directive discussions to 51% for visits with such discussions (P =.003).
Conclusions:
Elderly patients with chronic illnesses were more satisfied with their primary care physicians and outpatient visits when advanced directives were discussed. The improvement in visit satisfaction was substantial and persistent. This should encourage physicians to initiate such discussions to overcome communication barriers might result in reduced patient satisfaction levels.
If physicians are to base treatment decisions on the evidence in the
medical literature, all the relevant results of trials must be available easily
and consistently. Yet it is common to have trouble identifying the hypothesis,
the research question, and the design of a published trial. It is even more
common to lose count of the participants or to be unable to tell who received
what therapies and the type of analysis used. As a result, it is often impossible
to know whether the conclusions are justified by the data.
Convinced of hope’s therapeutic benefits, physicians routinely support patients’ false hopes, often with family collusion and vague, euphemistic diagnoses and prognoses, if not overt lies. Bioethicists charge them with paternalistic violations of Patient Autonomy.
There are, I think, too many morally significant exceptions to accept the physician’s rationales or the bioethicist’s criticisms, stated sweepingly. Physicians need to take account of the harms caused by loss of hopes, especially false hopes due to deception, as well, as of the harms of successfully maintained deceptive hopes. As for autonomy, hopes – even if based on deception – can protect and enhance autonomy, understood broadly as the capacity to lead a chosen or embraced life.
Deception aside, patients’ hopes often rest on beliefs about possible rather than probable outcomes – beliefs themselves supported by optimism, ‘denial’, or self‐deception. Such ‘possibility‐hopes’ may conflict with physicians’ often more fact‐sensitive ‘probability‐hopes.’ To resolve such conflicts physicians may try to ‘down‐shift’ patients’ or parents’ hopes to lesser, more realistic hopes. Alternatively, physicians may alter or enlarge their own professional hopes to include the ‘vital hopes’ that define the lives of patients or parents, as well as ‘survival hopes’ needed to face and bear the loss of loved ones, especially children.
A principle of Hope‐giving might help guide such sympathetic hope‐accommodations. More generally, it would give Hope a distinct place among Beneficence, Autonomy, and the other moral factors already high‐lighted by canonical principles of Medical Ethics. To formulate such a principle, however, we will need a collective Project Hope to pursue deeper philosophical and psychological studies.
A question prompt list (QPL) is a structured list of questions designed to encourage patients to acquire information during a medical consultation. It has been shown to be an effective, inexpensive means of helping cancer patients ask questions in certain content areas when consulting an oncologist. The objective of this study was to develop a QPL for cancer patients seeing a surgeon initially, targeting issues identified by patients as important. Focus groups and structured interviews were convened with 22 cancer patients. One focus group was conducted with allied health professionals. Focus groups were audiotaped, transcribed and content analysed to ensure all issues were identified. The results led to the identification of 59 questions covering five themes. We have grouped the questions under the following themes: preliminary negotiation and discussion of diagnosis and its implications; further investigations--why and how; am I seeing the right doctor--who else should I see?; treatment information and options; and support. Participants believed that the QPL would be useful not only during diagnosis and discussions regarding the surgical care but also subsequently. Patients felt that provision and endorsement of a QPL would assist them to achieve their information needs and participation preferences.
Patients with COPD frequently do not discuss end-of-life care with physicians; therefore, we sought to identify the barriers and facilitators to this communication as a first step to overcoming barriers and capitalizing on facilitators.
Fifteen barriers and 11 facilitators to patient-physician communication about end-of-life care were generated from focus groups of patients with COPD. We subsequently conducted a cross-sectional study of 115 patients with oxygen-dependent COPD and their physicians to identify the common barriers and facilitators and examine the association of these barriers and facilitators with communication about end-of-life care.
Patients with oxygen-dependent COPD were recruited from clinics at a university, county, and Veterans Affairs teaching hospital, and an oxygen delivery company. We also recruited the physician identified by each patient as the doctor primarily responsible for their lung disease.
Patients were interviewed by trained research interviewers. Physician data collection was completed by mail survey. Participation rates were 40% for patients and 86% for physicians. Only 32% of patients reported having a discussion about end-of-life care with their physician. Two of 15 barriers and 8 of 11 facilitators were endorsed by > 50% of patients. The most commonly endorsed barriers were "I'd rather concentrate on staying alive," and "I'm not sure which doctor will be taking care of me." Two barriers were significantly associated with lack of communication, as follows: "I don't know what kind of care I want," and "I'm not sure which doctor will be taking care of me." The greater the number of barriers endorsed by patients, the less likely they were to have discussed end-of-life care with physicians (p < 0.01), suggesting the validity of these barriers. Conversely, the more facilitators, the more likely patients were to report having had end-of-life discussions with their physicians (p < 0.001).
Although patients endorsed many barriers and facilitators, few barriers were endorsed by most patients. Barriers and facilitators associated with communication are targets for interventions to improve end-of-life care, but such interventions will likely need to address the specific barriers relevant to individual patient-physician pairs.
Small-group teaching is particularly suited for complex skills such as communication. Existing work has identified the basic elements of small-group teaching, but few descriptions of higher-order teaching practices exist in the medical literature. Thus the authors developed an empirically driven and theoretically grounded model for small-group communication-skills teaching. Between 2002 and 2005, teaching observations were collected over 100 hours of direct contact time between four expert facilitators and 120 medical oncology fellows participating in Oncotalk, a semiannual, four-day retreat focused on end-of-life communication skills. The authors conducted small-group teaching observations, semistructured interviews with faculty participants, video or audio recording with transcript review, and evaluation of results by faculty participants. Teaching skills observed during the retreats included a linked set of reflective, process-oriented teaching practices: identifying a learning edge, proposing and testing hypotheses, and calibrating learner self-assessments. Based on observations and debriefings with facilitators, the authors developed a conceptual model of teaching that illustrates an iterative loop of teaching practices aimed at enhancing learners' engagement and self-efficacy. Through longitudinal, empirical observations, this project identified a set of specific teaching skills for small-group settings with applicability to other clinical teaching settings. This study extends current theory and teaching practice prescriptions by describing specific teaching practices required for effective teaching. These reflective teaching practices, while developed for communication skills training, may be useful for teaching other challenging topics such as ethics and professionalism.
This paper is a description of inductive and deductive content analysis.
Content analysis is a method that may be used with either qualitative or quantitative data and in an inductive or deductive way. Qualitative content analysis is commonly used in nursing studies but little has been published on the analysis process and many research books generally only provide a short description of this method.
When using content analysis, the aim was to build a model to describe the phenomenon in a conceptual form. Both inductive and deductive analysis processes are represented as three main phases: preparation, organizing and reporting. The preparation phase is similar in both approaches. The concepts are derived from the data in inductive content analysis. Deductive content analysis is used when the structure of analysis is operationalized on the basis of previous knowledge.
Inductive content analysis is used in cases where there are no previous studies dealing with the phenomenon or when it is fragmented. A deductive approach is useful if the general aim was to test a previous theory in a different situation or to compare categories at different time periods.