Background: Intellectual and Developmental Disabilities (IDD) are defined as physical/mental impairments before age 18. Not only are many IDD patients living into adulthood, but deinstitutionalization has also led to most living in community settings. Little is known about end-of-life needs in these adults, and existing literature does not examine attitudes of Canadian providers.
Objective: Thematic and content analysis examined attitudes of Canadian Pediatric Palliative Care (PPC) practitioners on caring for adults with IDD to identify components of care, which could be improved.
Design: An anonymized survey was created (Surveymonkey.com) using open-ended and Likert-scale questions, with thematic/subthematic coding on NVivo11. Initial coding included a codebook, which was refined. Independent coding was compared with initial coding. Coded data were reanalyzed after demographic stratification, results discussed, and consensus reached.
Settings/Subjects: All Canadian PPC centers responded through snowball sampling (25 of 36 [70%] practitioners).
Measurements/Results: Major themes covered communication and decision making, lack of resources (including access to appropriate services), and knowledge/skill/experience gaps among adult palliative care and generalist practitioners. Gaps included complex medical conditions of IDD patients, trajectories, and related management. Knowledge ratings of adult palliative care and generalist practitioners by respondents were evenly distributed, but only pediatricians gave ratings of poor or worse. PPC practitioners are comfortable being consulted by adult palliative care and generalist colleagues. However, frequency of consults varied dramatically, from one to two times/month in British Columbia to never.
Conclusions: PPC practitioners across Canada identified several major issues and barriers to optimal palliative care for adults with IDD.
Background: Over the last two decades an increasing number of countries have legalized euthanasia and physician-assisted suicide (EAS) leading to considerable debate over the inherent ethical dilemmas. Increasing numbers of people with personality disorders, faced with unbearable suffering, have requested and received assistance in terminating their lives. EAS in people with personality disorders has, however, received very sparse attention from clinicians and researchers. In this paper, we examine the literature on the practice and prevalence of EAS in people with personality disorders to date and discuss the associated challenges for research and practice.
Methods: Narrative review of the literature combined with the authors' collective experience and knowledge of personality disorders.
Results: In six of the eight countries where EAS is currently legal, mental disorders are accepted as disorders for which EAS may be granted. In four of these countries, EAS in minors with mental disorders is also accepted. Our literature search resulted in 9 papers on the subject of EAS in people with personality disorders. These studies suggest that most clinicians who grant EAS have indeed perceived their patients' suffering as chronic, unbearable and untreatable without prospect of improvement. The majority of patients with personality disorders had tried some form of psychotherapy, but very few had received any of the relevant evidence-based treatments. The decision to grant EAS based on a perception of the patient's illness as being untreatable with no prospect of improvement, could, thus, in many cases fail to meet the due care criteria listed in EAS laws. People with personality disorders more often wish for death for extended periods of time than people without these disorders. However, there is ample empirical data to show that suicidal tendencies and behaviour can be treated and that they fluctuate rapidly over time.
Conclusions: In light of our findings, we believe that the current legislation and practice of EAS for people with personality disorders is based on an inadequate understanding of underlying psychopathology and a lack of awareness about the contemporary treatment literature. Moreover, we assert that this practice neglects the individual's potential for having a life worth living.
OBJECTIVE: In Belgium, people with an incurable psychiatric disorder can file a request for euthanasia claiming unbearable psychic suffering. For the request to be accepted, it has to meet stringent legal criteria. One of the requirements is that the patient possesses decision-making capacity. The patient's decision-making capacity is assessed by physicians.The objective of our study is to provide insight in the assessment of decision-making capacity in the context of euthanasia for patients with psychic suffering caused by a psychiatric disorder.
METHOD: Twenty-two semistructured interviews with psychiatrists and neurologists were analysed with NVivo, a qualitative analysis software to code and organise transcribed data.
RESULTS: Different views and approaches regarding decision-making capacity in the context of euthanasia emerged from the data. Most of the physicians have some knowledge of the cognitive ability approach on decision-making capacity. According to this approach, four abilities constitute decision-making capacity: communication, understanding, appreciation and reasoning. We observed differences in the way these abilities are valued in relation to competence. Some physicians take additional elements into consideration when assessing decision-making capacity. Physicians acquired their knowledge on the subject in many different ways. Most of the physicians reported that decision-making capacity was not part of their training.
CONCLUSION: We conclude that physicians assess decision-making capacity in different ways and that personal values and beliefs influence their approach. As such, a common approach in assessing the decision-making capacity of a patient among the interviewed physicians is lacking. Less arbitrariness could be obtained by consistently implementing the cognitive ability approach.
BACKGROUND: Since its legalisation in 2002, the number of times euthanasia has been carried out in response to requests from adults with psychiatric conditions (APC) has continued to increase. However, little is known about why and how psychiatrists become engaged in the assessment of such euthanasia requests.
METHODS: A cross-sectional survey study was conducted between November 2018 and April 2019 of 499 psychiatrists affiliated with the Flemish Psychiatry Association. Chi square/Fisher's exact tests were performed to examine if, and to what extent, psychiatrists' backgrounds relate to their concrete experiences. The answers to the open question regarding motives for (non-) engagement were thematically coded.
RESULTS: Two hundred one psychiatrists participated, a response rate of 40%. During their careers, 80% of those responding have been confronted with at least one euthanasia request from an APC patient and 73% have become involved in the assessment procedure. Their engagement was limited to the roles of: referring physician (in 44% of the psychiatrists), attending physician (30%), legally required 'advising physician' (22%), and physician participating in the actual administration of the lethal drugs (5%). Within the most recent 12 months of practice, 61% of the respondents have been actively engaged in a euthanasia assessment procedure and 9% have refused at least once to be actively engaged due to their own conscientious objections and/or the complexity of the assessment. The main motive for psychiatrists to engage in euthanasia is the patient's fundamental right in Belgian law to ask for euthanasia and the psychiatrist's duty to respect that. The perception that they were sufficiently competent to engage in a euthanasia procedure was greater in psychiatrists who have already had concrete experience in the procedure.
CONCLUSIONS: Although the majority of psychiatrists have been confronted with euthanasia requests from their APC patients, their engagement is often limited to referring the request to a colleague physician for further assessment. More research is needed to identify the determinants of a psychiatrist's engagement in euthanasia for their APC patients and to discover the consequences of their non-, or their restricted or full engagement, on both the psychotherapeutic relationship and the course of the euthanasia request.
OBJECTIVES: To explore perceptions, experiences and expectations with respect to palliative care of patients with severe mental illness (SMI) and an incurable, life-limiting chronic illness.
METHODS: Face-to-face semistructured interviews were conducted with 12 patients (10 of them living in a mental healthcare institution) with severe mental and physical health issues in the Netherlands. A semistructured interview guide was used to elicit perceptions of, experiences with and expectations regarding palliative care. Data were analysed using inductive content analysis.
RESULTS: Analysis of the data revealed eight categories: perceptions on health and health issues, coping with illness and symptoms, experiences with and wishes for current healthcare, contact with relatives and coresidents, experiences with end of life of relatives and coresidents, willingness to discuss end of life and death, wishes and expectations regarding one's own end of life and practical aspects relating to matters after death. These categories were clustered into two separate themes: current situation and anticipation of end of life. Interviewees with SMI appeared not accustomed to communicate about end-of-life issues, death and dying due to their life-threatening illness. They tended to discuss only their current situation and, after further exploration of the researcher, the terminal phase of life. They seemed not engaged in their future palliative care planning.
CONCLUSIONS: Findings of this study highlight inadequacies in advance care planning for patients with SMI. Results suggest using values, current and near wishes, and needs as a starting point for establishing a gradual discussion concerning goals and preferences for future medical and mental treatment and care.
PURPOSE OF REVIEW: People living with serious mental illness are at a higher risk of developing respiratory problems that can lead to increased morbidity and early mortality. This review aimed to identify recent advances in care provision for people with respiratory problems and preexisting serious mental illness to ease symptom burden and reduce the risk of premature mortality.
RECENT FINDINGS: Intervention-based studies in this area are scarce. The evidence reviewed originated from observational studies. Concluding comments from the synthesis suggest there are specific needs for proactive screening of respiratory function as part of routine physical health checks across care settings for people living with serious mental illness, more stringent monitoring of comorbid chronic lung conditions and increased attention in reducing the frequency respiratory infections. Integrated services across care settings are needed to support people with serious mental illness to limit the impact of modifiable lifestyle factors known to be detrimental to respiratory health, such as smoking.
SUMMARY: Key priorities are identified to improve accessibility and inclusivity of respiratory care pathways for people living with serious mental illness to support early detection and proactive monitoring of respiratory problems to help reduce the risk of early mortality.
Physician-assisted death for patients suffering from psychiatric disorders is allowed in the Netherlands under certain circumstances. One of the central problems that arise with regard to this practice is the question of whether it is possible to distinguish between suicidality and a request for physician-assisted death. We set up this study to gain insight into how psychiatrists and general practitioners distinguish between suicidality and physician-assisted death. The data for this study were collected through qualitative interviews with 20 general practitioners and 17 psychiatrists in the Netherlands. From the interviews, we conclude that physicians distinguish three types of death wishes among patients suffering from psychiatric disorders: 'impulsive suicidality,' 'chronic suicidality,' and 'rational death wishes.' To discern between them they evaluate whether the death wish is seen as part of the psychopathology, whether it is consistent over time, and whether they consider it treatable. Some considered physician-assisted death an alternative to a 'rational suicide,' as this was perceived to be a more humane manner of death for the patient and their relatives. We argue that physician-assisted death can be justified also in some cases in which the death wish is part of the psychopathology, as the patient's suffering can be unbearable and irremediable. Physician-assisted death in these cases may remain the only option left to relieve the suffering.
Context: In most jurisdictions where medical-aid-in-dying (MAiD) is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD.
Methods: We developed a questionnaire for mental health care providers to better understand their perspectives related to ethical issues in relation to MAiD in the context of severe and persistent suffering caused by mental illness. We used a mixed-methods survey approach, using a concurrent embedded model with both closed and open-ended questions.
Findings: 477 healthcare providers from the province of Québec (Canada) completed the questionnaire. One third of the sample (34.4%) were nurses, one quarter psychologists (24.3%) and one quarter psycho-educators (24%). Nearly half of the respondents (48.4%) considered that people with a severe mental illness should be granted the right to opt for MAiD as a way to end their suffering. Respondents were more likely to feel comfortable listening to the person and participating in discussions related to MAiD for a mental illness than offering care or the means for the person to access MAiD. Most (86.2%) reported that they had not received adequate/sufficient training, education or preparation in order to address ethical questions surrounding MAiD.
Conclusions: The findings highlight how extending MAiD to people with a mental illness would affect daily practices for mental healthcare providers who work directly with people who may request MAiD. The survey results also reinforce the need for adequate training and professional education in this complex area of care.
OBJECTIVE: Palliative, end-of-life care (PEOLC) providers are poorly resourced in addressing the needs of patients with mental health challenges, and the dying experiences of this cohort-particularly those with a comorbid, chronic and persistent mental illness (CPMI)-are poorly documented. We sought to explore the experiences of PEOLC providers with regard to caring for patients with mental health challenges, and gather insights into ways of improving accessibility and quality of PEOLC for these patients.
METHOD: Twenty providers of PEOLC, from different disciplines, took part in semi structured interviews. The data were coded and analyzed using a reflexive, inductive-deductive process of thematic analysis.
RESULTS: The most prominent issues pertained to assessment of patients and differential diagnosis of CPMI, and preparedness of caregivers to deliver mental health interventions, given the isolation of palliative care from other agencies. Among the assets mentioned, informal relationships with frontline caregivers were seen as the main support structure, rather than the formal policies and procedures of the practice settings. Strategies to improve mental health care in PEOLC centered on holistic roles and interventions benefiting the entire palliative population, illustrating the participants saw little point in compartmentalizing mental illness, whether diagnosed or not.
SIGNIFICANCE OF RESULTS: Continuity of care and personal advocacy can significantly improve quality of life for end-of-life patients with mental health challenges, but bureaucracy and disciplinary siloing tend to isolate these patients and their caregivers. Improved interdisciplinary connectivity and innovative, hybridized roles encompassing palliation and psychiatry are 2 strategies to address this disconnect, as well as enhanced training in core mental health care competencies for PEOLC providers.
BACKGROUND: Although the Belgian assessment pathway for legal euthanasia requires the engagement of at least one psychiatrist, little is known about psychiatrists' attitudes towards euthanasia for adults with psychiatric conditions (APC). This study aims to gauge psychiatrists' attitudes towards and readiness to engage in euthanasia assessment and/or performance procedures in APC.
METHODS: This cross-sectional survey study was performed between November 2018 and April 2019. The survey was sent to a sample of 499 eligible psychiatrists affiliated to the Flemish Association for Psychiatry, a professional association that aims to unite and represent all psychiatrists working in Flanders, the Dutch-speaking, northern part of Belgium. The Association's members comprise an estimated 80-90% of all psychiatrists active in Flanders. Only psychiatrists working with APC (83% of the association's total membership) were included. Factorial Anova and Chi Square tests were performed to examine if and to what extent psychiatrists' backgrounds were associated with, respectively, their attitudes and their readiness to play a role in euthanasia procedures concerning APC.
RESULTS: One hundred eighty-four psychiatrists completed the questionnaire (response rate 40.2%); 74.5% agree that euthanasia should remain permissible for APC. However, 68.9% question some of the approaches taken by other physicians during the euthanasia assessment and only half consider euthanasia assessment procedures compatible with the psychiatric care relationship. Where active engagement is concerned, an informal referral (68%) or preliminary advisory role (43.8%) is preferred to a formal role as a legally required advising physician (30.3%), let alone as performing physician (<10%).
CONCLUSION: Although three quarters agree with maintaining the legal option of euthanasia for APC, their readiness to take a formal role in euthanasia procedures appears to be limited. More insight is required into the barriers preventing engagement and what psychiatrists need, be it education or clarification of the legal requirements, to ensure that patients can have their euthanasia requests assessed adequately.
OBJECTIVE: To describe end-of-life (EOL) care in individuals with bipolar disorder (BD) who died from cancer compared to mentally healthy individuals.
METHODS: This was a nationwide cohort study of all adult individuals who died from cancer in hospitals in France between 2013 and 2016. Outcomes were compared between individuals with BD versus mentally healthy individuals in the last month of life including palliative care and high-intensity EOL care (chemotherapy, artificial nutrition, and other interventions). A sub-analysis explored differences between patients with BD and patients with schizophrenia.
RESULTS: The study included 2015 individuals with BD and 222,477 mentally healthy controls. Compared to the controls, individuals with BD died 5 years earlier, more often had comorbidities and thoracic cancer, and had fewer metastases, but did not have shorter delays from cancer diagnosis to death. After matching and adjustment for covariates, individuals with BD more often received palliative care in the last 3 days of life (25% vs. 13%, p<0.001), and less high-intensity care (e.g., chemotherapy 12% vs. 15%, p=0.004), but more artificial nutrition (6% vs 4.6%, p=0.003). Compared with the schizophrenia comparison group, chemotherapy was received more by individuals with BD in the last 14 days of life (12. 5% for BD vs 9.4%, p<0.001).
CONCLUSIONS: Individuals with BD were more likely to receive palliative care and less likely to receive high-intensity EOL care, except for artificial nutrition. These results may not be specific to BD, as no difference was found between patients with BD and schizophrenia except for chemotherapy.
Background: Approximately 4.5% of the population live with serious mental illness (SMI), a term referring to mental health disorders that are chronic, impair function, and require ongoing treatment. People living with SMI are at risk of premature mortality relative to people without SMI. Chronic medical illnesses contribute significantly to mortality among individuals with SMI. The standard of care for individuals with serious medical illnesses includes palliative care. However, the provision of palliative care has not been operationalized for individuals with SMI.
Objective/Methods: This narrative review presents existing epidemiologic data on end-of-life (EOL) care and palliative care for individuals with comorbid serious medical illness and SMI. Challenges in the care of such patients are discussed. The role of the consultation-liaison psychiatrist in providing EOL care for individuals with SMI is delineated with an eye towards redressing disparities.
Results: Individuals with SMI are at risk of sub-optimal end-of-life care. Patient, clinician, and system-level factors all contribute to disparities including decreased access to palliative care, uneven continued engagement with mental health services, and low rates of advance care planning. CL psychiatrists can use their expertise at the intersection of medicine and psychiatry to address such disparities by (1) correcting misassumptions, (2) promoting advance care planning, (3) engaging long-term caregivers, (4) recognizing social needs, (5) ensuring ongoing access to psychiatric treatment, and (6) addressing suffering.
Conclusions: There are significant disparities in the end-of-life care of individuals with SMI. CL psychiatrists have expertise to ally with medical providers and redress these disparities.
Objectives: Euthanasia and assisted suicide (EAS) of individuals with mental disorders is a growing practice in several countries, including the Netherlands. Here, we aimed to identify the most frequent dimensions of and associated factors to psychological pain, which has been associated with suicidality, in individuals undergoing psychiatric EAS.
Methods: An exploratory retrospective content analysis of the English translation of 66 digital case records of individuals who died by EAS in the Netherlands between 2011 and 2014 was performed. Nine standard psychological pain dimensions (irreversibility, loss of control, emptiness, emotional flooding, freezing, social distancing, narcissistic wounds, confusion, and self-estrangement), illness, and sociodemographic variables were evaluated by 2 independent raters using a premade data abstraction form (Kohen > 0.8 in all cases).
Results: The mean number of dimensions was 4.64 ± 1.20 (median = 5), out of 9. The most frequent dimensions were irreversibility, loss of control, emptiness, and emotional flooding, in decreasing order. Past treatment refusal and the mention of social connections in case descriptions were related to the higher number of psychological pain dimensions (4.89 ± 1.24 vs. 4.31 ± 1.07, P = 0.03 and 5.05 ± 1.17 vs. 4.43 ± 1.17, P = 0.03, respectively). Emotional flooding was the only dimension specifically associated with specific psychiatric conditions, namely posttraumatic phenomena and personality disorders.
Conclusions: Numerous psychological pain dimensions were detected in case descriptions of individuals who underwent EAS before the procedure. Subjective nature of the study precludes definite conclusions but suggest that future studies should explore psychological pain and the role of interventions targeting it in patients requesting EAS.
Background: Euthanasia and assisted suicide (EAS) based on a psychiatric disorder (psychiatric EAS) continue to pose ethical and policy challenges, even in countries where the practice has been allowed for years. We conducted a systematic review of reasons, a specific type of review for bioethical questions designed to inform rational policy-making. Our aims were twofold: (1) to systematically identify all published reasons for and against the practice (2) to identify current gaps in the debate and areas for future research.
Methods: Following the PRISMA guidelines, we performed a search across seven electronic databases to include publications focusing on psychiatric EAS and providing ethical reasons. Reasons were grouped into domains by qualitative content analysis.
Results: We included 42 articles, most of which were written after 2013. Articles in favor and against were evenly distributed. Articles in favor were mostly full-length pieces written by non-clinicians, with articles against mostly reactive, commentary-type pieces written by clinicians. Reasons were categorized into eight domains: (1) mental and physical illness and suffering (2) decisional capacity (3) irremediability (4) goals of medicine and psychiatry (5) consequences for mental health care (6) psychiatric EAS and suicide (7) self-determination and authenticity (8) psychiatric EAS and refusal of life-sustaining treatment. Parity- (or discrimination-) based reasons were dominant across domains, mostly argued for by non-clinicians, while policy reasons were mostly pointed to by clinicians.
Conclusions: The ethical debate about psychiatric EAS is relatively young, with prominent reasons of parity. More direct engagement is needed to address ethical and policy considerations.
Background: Population-based data are presented on the nature of dying in intellectual disability services.
Methods: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF.
Results: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life.
Conclusion: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.
Physiatrists care for patients and families with complex medical needs, and primary palliative care is an important part of the comprehensive rehabilitation care plan. Palliative care improves patient and family quality of life and reduces healthcare costs. Clinical care guidelines for several physiatry patient populations now include the provision of palliative care.
Current Accreditation Council for Graduate Medical Education (ACGME) physiatry residency program requirements include foundational palliative care skills. Similarly, current clinical palliative care practice guidelines enumerate standards that apply to the rehabilitation setting. However, there is a dearth of literature on the current state of palliative care training within physiatry programs, and hospice and palliative medicine (HPM) remains one of the least subscribed physiatry subspecialties.
In this paper, we describe palliative care, highlight existing literature on palliative care needs within physiatry patient populations, and identify a core physiatry-palliative care skillset. We look both within physiatry and across other specialties to guide recommendations for palliative care education within physiatry residency programs. We also describe opportunities for post-residency fellowship training in HPM.
Context: During the course of March and April 2020, New York City experienced a surge of a 170,000 coronavirus disease 2019 (COVID-19) cases, overwhelming hospital systems and leading to an unprecedented need for palliative care services.
Objectives: to present a model for rapid palliative care workforce expansion under crisis conditions, using supervised advanced psychiatry trainees to provide primary palliative services in the acute care and emergency setting.
Methods: In response to the New York City COVID-19 surge, advanced psychiatry trainees at New York-Presbyterian Columbia University Irving Medical Center were rapidly trained and redeployed to a newly formed psychiatry-palliative care liaison team. Under the supervision of consultation-liaison psychiatrists (who also served as team coordinators), these trainees provided circumscribed palliative care services to patients and/or their families, including goals-of-care discussions and psychosocial support. Palliative care attendings remained available to all team members for more advanced and specialized supervision.
Results: The psychiatry-palliative care liaison team effectively provided palliative care services during the early phase and peak of New York City's COVID-19 crisis, managing up to 16 new cases per day and provided longitudinal follow-up, thereby enabling palliative care specialists to focus on providing services requiring specialist-level palliative care expertise.
Conclusion: by training and supervising psychiatrists and advanced psychiatry trainees in specific palliative care roles, palliative care teams could more effectively meet markedly increased service needs of varying complexity during the COVID-19 crisis. As new geographic regions experience possible COVID-19 surges in the coming months, this may serve as a model for rapidly increasing palliative care workforce.
There is a called-for shift to an upstream provision of palliative care as an overall care approach within a health equity perspective. Our research explored how nurses in psychiatry engage with aging patients and mortality to discern enactment of ethical dimensions of care. Drawing from tenets of interpretative phenomenological analysis, forensic and geriatric psychiatry registered nurses working at a mental health facility in eastern Ontario completed interviews for analysis. Nurses engaged with mortality through a process of recognition and through the affirmation of their values. The affirmed values are aligned with the palliative care approach and within an ethics of finitude lens in that their enactment is partly premised on the recognition of patients’ accumulated losses related to human facticities (social, temporal, mortal). This research underscores preliminary insights on a process identifying care practices aligned with the palliative approach and possibilities for expanding upon an ethics of finitude lens.
In this edition of the Canadian journal of psychiatry, van Veen and colleagues provide a thorough scoping review of the literature regarding physician-assisted death (PAD) in patients with a psychiatric disorder (PPD).
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In a recent article Joshua James Hatherley argues that, if physician-assisted suicide (PAS) is morally permissible for patients suffering from somatic illnesses, it should be permissible for psychiatric patients as well. He argues that psychiatric disorders do not necessarily impair decision-making ability, that they are not necessarily treatable and that legalising PAS for psychiatric patients would not diminish research and therapeutic interest in psychiatric treatments or impair their recovery through loss of hope. However, by erasing distinction between somatic and psychiatric disorders on those grounds, he also erases distinction between healthy adults and patients (whether somatic or psychiatric) essentially implying that PAS should be available to all, for all reasons or, ultimately no reason. Furthermore, as psychiatric patients are much more likely to be a source of usable organs for transplantation, their broad inclusion would strengthen the link between PAS/euthanasia and organ donation, potentially undermining both as well as diminishing already declining general trust in medical authorities and professionals and public health authorities and activists.