BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described.
AIM: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict.
DESIGN: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods.
SETTING/PARTICIPANTS: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children.
RESULTS: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make-or be part of-life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust.
CONCLUSION: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.
Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID).
Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33).
Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP.
Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.
OBJECTIVE: Switzerland is among the few countries worldwide where a request for assisted suicide (AS) can be granted on the basis of a primary psychiatric diagnosis. Psychiatrists play an increasingly important role in this regard, especially when the request for AS arises in the context of suffering caused by severe and persistent mental illness (SPMI). The objective of the survey was to assess general attitudes among psychiatrists in Switzerland regarding AS requests from patients with SPMI.
METHOD: In a cross-sectional survey of 1,311 German-speaking psychiatrists in Switzerland, participants were asked about their attitude to AS for patients with SPMI, based on three case vignettes of patients diagnosed with anorexia nervosa, treatment-refractory depression, or severe persistent schizophrenia.
RESULT: From a final sample of 457 psychiatrists (a response rate of 34.9%) whose mean age was 57.8 years, 48.6% of respondents did not support access to AS for persons diagnosed with SPMI, 21.2% were neutral, and 29.3% indicated some degree of support for access. In relation to the case vignettes, a slightly higher percentage of respondents supported the patient's wish to seek AS: 35.4% for those diagnosed with anorexia nervosa, 32.1% for those diagnosed with depression, and 31.4% for those diagnosed with schizophrenia.
SIGNIFICANCE OF RESULTS: Although a majority of the responding psychiatrists did not support AS for SPMI patients, about one-third would have supported the wishes of patients in the case vignettes. In light of the increasing number of psychiatric patients seeking AS and the continuing liberalization of AS practices, it is important to understand and take account of psychiatrists' perspectives.
BACKGROUND: Patients with serious mental disorders have poorer healthcare outcomes at the end of life and are at greater risk of dying from unnatural causes. Aims: To explore place of death and demographic and clinical correlates of unnatural causes of death in patients with serious mental disorders.
METHOD: Routinely collected patient data were used to explore bivariate and adjusted associations between covariates and natural/unnatural cause of death.
RESULTS: In multivariable analysis (n = 1029), dying at home (odds ratio (OR) = 1.87, 95% CI 1.03-3.40), 'other' locations (OR = 16.50, 95% CI 7.57-36.00), younger age (OR = 17.26, 95% CI 8.28-36.00) and a diagnosis other than schizophrenia spectrum disorder (OR = 1.69, 95% CI 1.04-2.73) were correlates of unnatural cause of death.
CONCLUSIONS: Deaths from unnatural causes were high and more likely to occur at home and non-healthcare settings. Unnatural causes of death were higher in younger patients with non-schizophrenia spectrum disorder diagnoses. Declaration of interest: F.G. has received support or honoraria for CME, advisory work and lectures from Bristol-Myers Squibb, Janssen, Lundbeck, Otsuka, Roche, and Sunovion, and has a family member with professional links to Lilly and GSK, including shares.
Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive pediatric palliative care services is largely unknown. We conducted a retrospective review of children with trisomy 18 receiving pediatric palliative care services at both Boston Children's Hospital, USA and Great Ormond Street Hospital, UK from January 1, 2004 to January 1, 2015. Fifty-eight children with trisomy 18 were referred to pediatric palliative care, 38 in the United Kingdom, 20 in the United States. Median age at referral was 19 days (2-89) in the United Kingdom, and 25 days (1-463) in the United States. Median length of time being followed by pediatric palliative care was 32 days (1-1,637) in the United Kingdom and 67 days (3-2,442) in the United States. The only significant difference in the two cohorts (p = .001) was in likelihood of receiving cardiac surgical intervention-37% in the United States, 0% the United Kingdom. Children with trisomy 18 receive pediatric palliative care services, with variable age at referral and for a variable length of time. Further research is needed to understand the experience of children with trisomy 18 and their families receiving pediatric palliative care services.
Objective: People with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research.
Method: A systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles.
Result: Four major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care.
Significance of results: This review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.
BACKGROUND: Euthanasia or assisted suicide (EAS) for psychiatric disorders, legal in some countries, remains controversial. Personality disorders are common in psychiatric EAS. They often cause a sense of irremediable suffering and engender complex patient-clinician interactions, both of which could complicate EAS evaluations.
METHODS: We conducted a directed-content analysis of all psychiatric EAS cases involving personality and related disorders published by the Dutch regional euthanasia review committees (N = 74, from 2011 to October 2017).
RESULTS: Most patients were women (76%, n = 52), often with long, complex clinical histories: 62% had physical comorbidities, 97% had at least one, and 70% had two or more psychiatric comorbidities. They often had a history of suicide attempts (47%), self-harming behavior (27%), and trauma (36%). In 46%, a previous EAS request had been refused. Past psychiatric treatments varied: e.g. hospitalization and psychotherapy were not tried in 27% and 28%, respectively. In 50%, the physician managing their EAS were new to them, a third (36%) did not have a treating psychiatrist at the time of EAS request, and most physicians performing EAS were non-psychiatrists (70%) relying on cross-sectional psychiatric evaluations focusing on EAS eligibility, not treatment. Physicians evaluating such patients appear to be especially emotionally affected compared with when personality disorders are not present.
CONCLUSIONS: The EAS evaluation of persons with personality disorders may be challenging and emotionally complex for their evaluators who are often non-psychiatrists. These factors could influence the interpretation of EAS requirements of irremediability, raising issues that merit further discussion and research.
David souffre de troubles autistiques, il a dû mal à communiquer avec les autres et n’a que peu d’amis. Kit, elle, a perdu son père dans un accident de voiture et depuis elle s’isole, même de ces meilleures amies. Un jour Kit s’assoie à la même table que David à la cantine pour être tranquille. Sans le savoir, ils vont commencer une histoire d’amitié qui va leur permettre de se soutenir et de s’aider l’un l’autre dans leurs difficultés.
BACKGROUND: People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use.
METHODS: Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients' and residents' unmet needs and end-of-life care options and to outline strategies to support them.
RESULTS: A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying 'at home'; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented.
CONCLUSIONS: Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.
BACKGROUND: Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual's personal relationships with family, friends and staff.
METHODS: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on the gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability.
RESULTS: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of 'Active and Ongoing', 'Active but Limited' and 'After Death'. Relationships with Friends had two sub-themes of 'Positive Experiences' and 'Negative Experiences', and Staff Roles had two sub-themes of 'Loss of Contact' and 'Default Decision Making'.
DISCUSSION: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual's end-of-life. A lack of counselling support was noted as potentially impairing the individual's friends' ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting.
BACKGROUND: The medical-ethical dilemmas related to euthanasia and physician-assisted suicide (EAS) in psychiatric patients are highly relevant in an international context. EAS in psychiatric patients appears to become more frequent in the Netherlands. However, little is known about the experiences of psychiatrists with this practice. This study aims to estimate the incidence of EAS (requests) in psychiatric practice in The Netherlands and to describe the characteristics of psychiatric patients requesting EAS, the decision-making process and outcomes of these requests.
METHODS: In the context of the third evaluation of the Dutch Euthanasia Act, a cross-sectional study was performed between May and September 2016. A questionnaire was sent to a random sample of 500 Dutch psychiatrists. Of the 425 eligible psychiatrists 49% responded. Frequencies of EAS and EAS requests were estimated. Detailed information was asked about the most recent case in which psychiatrists granted and/or refused an EAS request, if any.
RESULTS: The total number of psychiatric patients explicitly requesting for EAS was estimated to be between 1100 and 1150 for all psychiatrists in a one year period from 2015 to 2016. An estimated 60 to 70 patients received EAS in this period. Nine psychiatrists described a case in which they granted an EAS request from a psychiatric patient. Five of these nine patients had a mood disorder. Three patients had somatic comorbidity. Main reasons to request EAS were 'depressive feelings' and 'suffering without prospect of improvement'. Sixty-six psychiatrists described a case in which they refused an EAS request. 59% of these patients had a personality disorder and 19% had somatic comorbidity. Main reasons to request EAS were 'depressive feelings' and 'desperate situations in several areas of life'. Most requests were refused because the due care criteria were not met.
CONCLUSIONS: Although the incidence of EAS in psychiatric patients increased over the past two decades, this practice remains relatively rare. This is probably due to the complexity of assessing the due care criteria in case of psychiatric suffering. Training and support may enable psychiatrists to address this sensitive issue in their work better.
BACKGROUND: Recently, euthanasia and assisted suicide (EAS) in patients with psychiatric disorders, dementia, or an accumulation of health problems has taken a prominent place in the public debate. However, limited is known about this practice. The purpose of this study was threefold: to estimate the frequency of requesting and receiving EAS among people with (also) a psychiatric disorder, dementia, or an accumulation of health problems; to explore reasons for physicians to grant or refuse a request; and to describe differences in characteristics, including the presence of psychiatric disorders, dementia, and accumulation of health problems, between patients who did and did not request EAS and between patients whose request was or was not granted.
METHODS: A nationwide cross-sectional survey study was performed. A stratified sample of death certificates of patients who died between 1 August and 1 December 2015 was drawn from the central death registry of Statistics Netherlands. Questionnaires were sent to the certifying physician (n = 9351, response 78%). Only deceased patients aged = 17 years and who died a non-sudden death were included in the analyses (n = 5361).
RESULTS: The frequency of euthanasia requests among deceased people who died non-suddenly and with (also) a psychiatric disorder (11.4%), dementia (2.1%), or an accumulation of health problems (8.0%) varied. Factors positively associated with requesting euthanasia were age (< 80 years), ethnicity (Dutch/Western), cause of death (cancer), attending physician (general practitioner), and involvement of a pain specialist or psychiatrist. Cause of death (neurological disorders, another cause) and attending physician (general practitioner) were also positively associated with receiving euthanasia. Psychiatric disorders, dementia, and/or an accumulation of health problems were negatively associated with both requesting and receiving euthanasia.
CONCLUSIONS: EAS in deceased patients with psychiatric disorders, dementia, and/or an accumulation of health problems is relatively rare. Partly, this can be explained by the belief that the due care criteria cannot be met. Another explanation is that patients with these conditions are less likely to request EAS.
BACKGROUND: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs.
AIMS: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care.
METHODS: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers.
FINDINGS: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support.
CONCLUSION: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings.
BACKGROUND: People with an intellectual disability experience significant inequalities in end-of-life and palliative care provision.
AIMS: To identify the key characteristics of practice initiatives and case reports that have won a UK award for the outstanding provision of end-of-life care for people with ID (2008-2018).
METHODS: Thematic content analysis of the written nominations for award winners and those highly commended (n=25).
FINDINGS: Four themes were identified: (1) Good practice was dependent on 'champions' with drive, enthusiasm and determination, supported by committed organisations and managers. (2) Collaboration was essential, including collaboration with families. (3) Care was highly individualised, putting the person's story at the centre. (4) There was a focus on staff training and use of specifically designed or adapted tools.
CONCLUSION: The good practice examples are encouraging. Focus is now needed on ensuring that good practice is sustained, replicated and embedded within policies and organisational cultures. Currently, it remains over-dependent on committed individuals within organisations.
This article summarizes a pilot simulation using standardized patients that was designed to develop skills necessary to care for the critically ill mental health patient nearing the end of life. Although the simulation was found to be a valuable teaching strategy, additional research, with a rigorous design, is recommended to further develop this teaching method. The authors suggest adopting a theoretical framework for debriefing that would elicit emotions, address the emotional needs of students, and assist them to develop coping strategies and skills necessary to care for patients at the end of life.
BACKGROUND: For health and social care services to meet the needs of a growing and ageing population they need to respond appropriately. This response is only going to be possible if attention is paid to the individuals within it. This includes those people living with a learning disability (LD).
AIMS:: To develop and implement a palliative care programme that would meet the needs of people with a LD, their families and care home staff.
METHODS:: A palliative care programme and resource folder was created following a literature review and meetings with LD and specialist palliative care experts, organisations and care home managers. This folder was further developed collaboratively throughout the programme's implementation.
FINDINGS:: 39 homes were recruited and 86% completed the programme.
CONCLUSIONS:: This programme enabled the identification, assessment and management of the health and social care needs of people living and dying in a care home with a LD.
Objective: to describe the cause of death together with emergency department presentations and hospital admissions in the last year of life of people with intellectual disability.
Method: a retrospective matched cohort study using de-identified linked data of people aged 20 years or over, with and without intellectual disability who died during 2009 to 2013 in Western Australia. Emergency department presentations and hospital admissions in the last year of life of people with intellectual disability are described along with cause of death.
Results Of the 63 508 deaths in Western Australia from 2009 to 2013, there were 591 (0.93%) decedents with a history of intellectual disability. Decedents with intellectual disability tended to be younger, lived in areas of more social disadvantage, did not have a partner and were Australian born compared with all other decedents. A matched comparison cohort of decedents without intellectual disability (n=29 713) was identified from the general population to improve covariate balance.
Decedents with intellectual disability attended emergency departments more frequently than the matched cohort (mean visits 3.2 vs 2.5) and on average were admitted to hospital less frequently (mean admissions 4.1 vs 6.1), but once admitted stayed longer (average length of stay 5.2 days vs 4.3 days). People with intellectual disability had increased odds of presentation, admission or death from conditions that have been defined as ambulatory care sensitive and are potentially preventable. These included vaccine-preventable respiratory disease, asthma, cellulitis and convulsions and epilepsy.
Conclusion: People with intellectual disability were more likely to experience potentially preventable conditions at the end of their lives. This indicates a need for further improvements in access, quality and coordination of healthcare to provide optimal health for this group.
BACKGROUND: Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability.
METHOD: We used a five-stage mixed-methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months.
RESULTS: The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health.
CONCLUSIONS: PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.
Background: Psychiatric advance directives have been incorporated in the Mental Health Care Act 2017 despite strong concerns about their feasibility and utility in the Indian patient population. Data on its utility in India is very scarce.
Aims: To determine the possible treatment options our clients make as a part of psychiatric advance directives.
Materials and Methods: Fifty consecutive individuals with severe mental illness were interviewed using a self-designed semi-structured tool to find out the possible choices they make as part of advance directives and the factors affecting their choices.
Results: About 10% of the participants failed to understand the concept of advance directives. Of those who understood, 89% were willing to make advance directives, 15% refused future hospitalizations, 47% refused future electroconvulsive therapies (ECTs), and 62% refused physical restraints in future.
Conclusion: The majority of the participants agreed to make advance directives. The majority of those who agreed to make advance directives refused to undergo ECTs and physical restraints in future episodes of illness. Approximately 10% of the patients could not understand the concept of advance directives.
Purpose of Report: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorized as that stage of dementia progression characterized by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. The questions before the summit were whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population.
FINDINGS: The summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the summit agreed that it is imperative that change is measured from the person's prior functioning in combination with clinical impressions of decline and of increasing comorbidity including particular attention to late onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognize the greater likelihood of physical symptoms, comorbidities, immobility, and neuropathological deterioration.
SUMMARY: The summit recommended an investment in research to more clearly identify measures for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers, and identify additional markers that may help signal decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.