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Palliative Care of the Terminally Ill Drug Addict

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Abstract

Palliative care with terminally ill drug addicts is a major challenge for medical professionals to face. With growing problems of prescription drug abuse in this country, the problem is only going to continue to grow and be faced more often. To date, very little has been done focusing on this special population of end-of-life care patients. This review article attempts to explore the terminology and definitions for identifying addiction in the terminally ill as well as exploring management options for healthcare professionals. As with other opioid treated pain patients, relying on terms such as "physiological dependence" and "tolerance" is inappropriate for use in this population, who are likely to have been on opioids for extended periods of time requiring dose escalation for progressive disease. Thus, these terms have little utility for identifying problem patients. Rather, understanding the context of the drug abuse as it reflects on the concepts of use despite harm and the damage inflicted to the physical, psychological, or social make-up of the patient is necessary. Recommendations include careful monitoring and assessment of patients, utilizing multidisciplinary team approaches, encouraging participation in recovery programs, and utilization of pill counts and urine toxicology screenings as necessary. Implications for the field are discussed.
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... Rather, it is the continual under treatment of pain in this population at the end of life, driven by the unexplored concerns related to opioids misuse. [25][26][27][28][29][30] Levels of prescribing may need to be higher for people using substances because of their tolerance to opioids from historic drug use. This may contravene established clinical guidelines in terms of opioid titration. ...
... Authors also mentioned 'pseudo-addiction'; behaviours that are misunderstood by health and social care staff as drug seeking (when patients 'act out' when distressed), rather than originating from poor or inadequate pain control. 25 There has been a challenge in using the label of 'pseudo-addiction' on both grounds of limited evidence and a logical inconsistency since people with a history of substance use cannot have a pseudo-addition as it is part of their history and therefore this label is not applicable. 32 Some papers 30 also delineated a need to distinguish between tolerance, physical dependence, and addiction, although they did not specify how this can be achieved. ...
... This surveillance was based on a recommendation for universal screening for substance misuse, urine testing, and sometimes pill counting. 25,27,31,45,46 There was an emphasis on the need to use validated tools. 27,31,47 Some papers recommended or used a particular measure to assess potential opioid misuse. ...
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This discussion article examines narrative positioning related to pain management for people who use substances at the end of life. We explore how dominant narrative genres associated with biomedicine, such as ‘restitution’ and narratives common within the context of drug services such as ‘recovery’ can hinder effective pain management within this population. We argue that these discourses can marginalise the ethical self-identity of patients who use substances at the end of life. It can also trouble health and social care professionals in supporting patients and generating counter-narratives that challenge those often associated with substance use. Stigma is a common experience for this population with stereotyping as ‘junkies’ and associated with criminality. They are positioned as drug-seeking, and this requires more surveillance at the end of life when opioid therapy is potentially more available and authorised. This can make it challenging to generate ‘companion’ stories that are positive and maintain moral adequacy. Dominant biomedical narrative genres often prevent the recognition of the fractured stories that people using substances can often present with. This can lead to narrative silencing and to the under treatment of pain. The person’s self-identity is invested in narratives of recovery, and opioid use symbolises their addicted past because for practitioners, this population is at clinical risk with the potential for drug seeking behaviours. Whilst not requiring formal ethical review this discussion paper was constructed in accordance with good scientific practice with the work of other researchers respected and cited appropriately.
... Previous experiences of seeking treatment for pain will also play a role and there is evidence that people experiencing poverty can struggle to access sufficient pain medication due to health professional prejudice regarding drug-seeking behaviour, 42 including in a palliative care context. 43 Health professionals have also been found to be more responsive to pain experienced by affluent patients. 44 This evidence points to a picture whereby people experiencing deprivation may be more likely to experience pain at the end of life, but less likely to receive appropriate pain relief. ...
... 109 Palliative pain relief for people in addiction is contentious. 43 The nature of palliative care input to meet the needs of people experiencing poverty and deprivation is unknown, although there is evidence from the service provider side that more resource may be required to achieve, what they view as, the same level of care. For example, a study in London found that twice as many homecare visits were required by palliative care nurses in areas of deprivation to achieve similar rates of home deaths as those in affluent areas. ...
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This critical review interrogates what we know about how poverty and deprivation impact people at the end of life and what more we need to uncover. While we know that people in economically resource-rich countries who experience poverty and deprivation over the life course are likely to die younger, with increased co-morbidities, palliative care researchers are beginning to establish a full picture of the disproportionate impact of poverty on how, when and where we die. This is something the Covid-19 pandemic has further illustrated. Our article uses a critical social science lens to investigate an eclectic range of literature addressing health inequities and is focused on poverty and deprivation at the end of life. Our aim was to see if we could shed new light on the myriad ways in which experiences of poverty shape the end of people’s lives. We start by exploring the definitions and language of poverty while acknowledging the multiple intersecting identities that produce privilege. We then discuss poverty and deprivation as a context for the nature of palliative care need and overall end-of-life circumstances. In particular, we explore: total pain; choice at the end of life; access to palliative care; and family caregiving. Overall, we argue that in addressing the effects of poverty and deprivation on end-of-life experiences, there is a need to recognise not just socio-economic injustice but also cultural and symbolic injustice. Too often, a deficit-based approach is adopted which both ‘Others’ those living with poverty and renders invisible the strategies and resilience they develop to support themselves, their families and communities. We conclude with some recommendations for future research, highlighting in particular the need to amplify the voices of people with lived experience of poverty regarding palliative and end-of-life care.
... [5][6][7] However, health care professionals and organizations are increasingly recognizing that a significant minority of patients receiving palliative care may demonstrate problematic opioid use, both relating to their own use and to diversion of these medications. [8][9][10][11] This is particularly relevant given the ongoing international crisis of opioid-related deaths. [12][13][14][15][16] As well, there is advocacy for and evidence supporting early involvement of palliative care in serious but not imminently life-threatening illnesses, which can lead to increased and prolonged exposure to opioids. ...
... No identified studies adequately assessed the psychometric properties of these questionnaires in palliative care, and none were identified that reported on tools developed specifically for palliative care populations. Despite the paucity of evidence, palliative care experts, and organizations are recommending the use of tools developed for chronic pain populations 17,21,22 in response to increasing concerns about harms associated with opioids; [8][9][10][11] our findings suggest that these recommendations are premature. Similarly, palliative care services are increasingly adopting the use of urine drug tests. ...
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Background Screening for problematic opioid use is increasingly recommended in patients receiving palliative care. Aim To identify tools used to assess for the presence or risk of problematic opioid use in palliative care. Design Scoping review. Data sources Bibliographic databases (inception to January 31, 2020), reference lists, and grey literature were searched to find primary studies reporting on adults receiving palliative care and prescription opioids to manage symptoms from advanced cancer, neurodegenerative diseases, or end-stage organ diseases; and included tools to assess for problematic opioid use. There were no restrictions based on study design, location, or language. Results We identified 42 observational studies (total 14,431 participants) published between 2009 and 2020 that used questionnaires ( n = 32) and urine drug tests ( n = 21) to assess for problematic opioid use in palliative care, primarily in US ( n = 38) and outpatient palliative care settings ( n = 36). The questionnaires were Cut down, Annoyed, Guilty, and Eye-opener (CAGE, n = 8), CAGE-Adapted to Include Drugs (CAGE-AID, n = 6), Opioid Risk Tool ( n = 9), Screener and Opioid Assessment for Patients with Pain (SOAPP; n = 3), SOAPP-Revised ( n = 2), and SOAPP-Short Form ( n = 5). Only two studies’ primary objectives were to evaluate a questionnaire’s psychometric properties in patients receiving palliative care. There was wide variation in how urine drug tests were incorporated into palliative care; frequency of abnormal urine drug test results ranged from 8.6% to 70%. Conclusion Given the dearth of studies using tools developed or validated specifically for patients receiving palliative care, further research is needed to inform clinical practice and policy regarding problematic opioid use in palliative care.
... The prevalence of substance abuse is increasing in the general population and we are encountering more patients with pain and history of substance abuse [4,5]. When pain requiring opioids are accompanied with a co-occurring addictive disorder, treatment becomes complicated and challenging both for the patient and the health care professionals. ...
... Despite this, there is scant literature on opioid risk evaluation and mitigation in the cancer population, and few guidelines on how to manage NMOU and substance use disorders in patients with cancer [6][7][8][9]. The limited literature outlines similar risk mitigation strategies as those recommended for the chronic noncancer pain population including screening, a multidisciplinary approach, utilization of adjuvant agents, structured dispensing, pill counts, urine drug tests, and treatment contracts [10][11][12][13]. Unfortunately, the evidence base for utilizing these approaches for patients with cancer is lacking [13]. ...
Article
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In response to Canada’s opioid crisis, national strategies and guidelines have been developed but primarily focus on opioid use for chronic noncancer pain. Despite the well-established utility of opioids in cancer care, and the growing emphasis on early palliative care, little attention has been paid to opioid risk in this population, where evidence increasingly shows a higher risk of opioid-related harms than was previously thought. The primary objective of this study was to assess oncology clinicians’ attitudes, confidence, and practices in managing opioids in outpatients with cancer. This was explored using pilot-tested, profession-specific surveys for physicians/nurse practitioners, nurses and pharmacists. Descriptive analyses were conducted in aggregate and separately based on discipline. Univariate and multiple linear regression analyses were performed to explore relationships between confidence and practices within and across disciplines. The survey was distributed to approximately 400 clinicians in January 2019. Sixty-five responses (27 physicians/nurse practitioners, 31 nurses, 7 pharmacists) were received. Participants endorsed low confidence, differing attitudes, and limited and varied practice in managing and mitigating opioid risks in the cancer population. This study provides valuable insights into knowledge gaps and clinical practices of oncology healthcare professionals in managing opioids and mitigating associated risks for patients with cancer.
... There is especially a need for more knowledge, financial resources and non-judgmental attitudes of healthcare professionals, and better assessment of substance use and symptoms. Pain is often under treated and medical treatment remains insufficient [15][16][17][18][19][20][21][22][23][24]. ...
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Background: There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome). Methods: A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach ('Grounded Theory Lite'). SWOT-findings were not subjected to in-depth analysis. Results: HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients' multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized. Conclusions: Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.
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Managing pain in patients with serious illness can be complex. However, pain is often a prominent symptom in patients with malignant and nonmalignant serious illness and providers have to be adept at balancing effective pain management and safety. Clinicians should start with a standard pain assessment that lays important groundwork for developing a tailored multimodal approach to pain management. It is important to identify physical causes of pain and also existential causes. Opioids are not always appropriate but are still an important tool for managing pain. Basic opioid management and safe practices are essential when managing this population.
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In June 2018, the Warren Alpert Medical School of Brown University hosted a national, multidisciplinary, interprofessional symposium on opioid curricula in undergraduate medical education. This article presents the consensus of an interprofessional group who attended a session focused on elements of an opioid curriculum, including key areas of content, teaching modalities, and learner assessment. This report also includes further directions and next steps for undergraduate medical education collaboration on opioid curricula.
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Objective: This study examined longitudinal patterns of narcotics use, other substance use, criminal involvement, morbidity, and mortality among narcotics addicts. Design: A 24-year follow-up study. Data were obtained from admission records and two face-to-face interviews conducted in 1974-1975 and 1985-1986. Participants: Five hundred eighty-one narcotics addicts admitted to the California Civil Addict Program during the years 1962 through 1964. Results: Most of this sample initiated narcotics use before age 20 years and had a mean age at program admission of 25.4 years. In 1974-1975, 13.8% of the sample died and 28.6% tested negative for opiates. Corresponding rates in 1985-1986 were 27.7% and 25.0%, respectively. Substance use and criminal involvement remained high among this sample into their late 40s. In any given year during the 10 years prior to the 1985-1986 interview, less than 10% of the sample participated in community-based treatment programs such as methadone maintenance. Disability, long periods of heavy alcohol use, heavy criminal involvement, and tobacco use were among the strongest correlates of mortality. Conclusions: The results suggest that the eventual cessation of narcotics use is a very slow process, unlikely to occur for some addicts, especially if they have not ceased use by their late 30s.
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BACKGROUND The goals of the current studies were: 1) to determine the pain treatment needs of socioeconomically disadvantaged African-American and Hispanic patients with recurrent or metastatic cancer and 2) to assess the attitudes of health care professionals who treat them.METHODS In the first study 108 African-American and Hispanic patients with metastatic or recurrent cancer and pain completed a survey about their pain intensity, pain interference, and attitudes toward analgesic medications. Physicians also rated their patients' pain and the adequacy of the patients' current analgesic prescriptions was assessed. In the second study 55 physicians and nurses who treat these patients completed a questionnaire regarding cancer pain and its management in their practice settings.RESULTSApproximately 28% of the Hispanic and 31% of the African-American patients received analgesics of insufficient strength to manage their pain. Although the majority of patients received appropriate analgesics, 65% reported severe pain. Physicians underestimated pain severity for 64% of the Hispanic and 74% of the African-American patients. Physicians were more likely to underestimate the pain severity of female patients than male patients. Inadequate pain assessment, patient reluctance to report pain, and lack of staff time were perceived as barriers to pain management.CONCLUSIONS Although the data suggest recent improvements in analgesic prescribing practices for African-American and Hispanic cancer patients, the majority of patients reported high levels of pain and limited pain relief from analgesic medications. Inadequate pain assessment remains a major barrier to optimal cancer pain treatment. Cancer 2000;88:1929–38. © 2000 American Cancer Society.
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Patients' reluctance to report pain and to use analgesics are considered major barriers to pain management. To explore this problem, 270 patients with cancer completed a 27-item self-report questionnaire (BQ) that assessed the extent to which they have concerns about reporting pain and using pain medication. The 8 specific concerns included fear of addiction, beliefs that ‘good’ patients do not complain about pain, and concern about side effects. Patients also completed a measure of pain severity and pain interference (the BPI). The percentages of patients having concerns assessed by the BQ ranged from 37% to 85%. Those who were older, less educated, or had lower incomes were more likely to have concerns. Higher levels of concern were correlated with higher levels of pain. Based on their reports of pain medications used in the past week and on their reports of pain severity, patients were categorized as under-medicated versus adequately medicated. Those who were under-medicated reported significantly higher levels of concern. The data are discussed in terms of implications for research and practice.
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We previously reported that Hispanic ethnicity was an independent risk factor for inadequate analgesic administration among patients presenting to a single emergency department. We then attempted to generalize these findings to other ethnic groups and EDs. Our current study objective is to determine whether black patients with extremity fractures are less likely to receive ED analgesics than similarly injured white patients. We conducted the following retrospective cohort study at an urban ED in Atlanta, GA. All black and white patients presenting with new, isolated long-bone fractures over a 40-month period were studied. After abstracting demographic information from the medical record and subsequently removing ethnic identifiers, we submitted the medical record to a physician who recorded characteristics of the patients' injury and treatment. We then submitted the records to a nurse, again blinded to ethnicity, who recorded analgesic administration. We used multiple logistic regression to determine the independent effect of ethnicity on analgesic use while controlling for multiple potential confounders. Our main outcome measure was the proportion of black versus white patients receiving ED analgesics. The study group consisted of 217 patients, of whom 127 were black and 90 were white. White patients were significantly more likely than black patients to receive ED analgesics (74% versus 57%, P =.01) despite similar records of pain complaints in the medical record. The risk of receiving no analgesic while in the ED was 66% greater for black patients than for white patients (relative risk 1.66, 95% confidence interval, 1.11 to 2.50). This effect persisted after controlling for multiple potential confounders. Black patients with isolated long-bone fractures were less likely than white patients to receive analgesics in this ED. No covariate measured in this study could account for this effect. Our findings have implications for efforts to improve analgesic practices for all patients.