A population survey finds that bereaved people draw upon diverse sources of support in their communities, from both formal services and informal networks of care. The formal service most frequently recognised by participants is provided by funeral directors. We outline some reasons for this, and explore one particular theme, memorialisation, in which funeral providers have traditionally been a lead discipline. Significant changes in memorialisation over recent decades challenge today’s funeral industry, but also draw our attention to underlying social changes reshaping our understanding not only of bereavement care but of care in general. Bereavement support is most effective when provided collaboratively by formal and informal care providers, but collaboration is challenged by policies that continue to privilege formal services over informal care. This challenge of developing constructive, respectful and complementary collaborations between formal and informal care is not peculiar to bereavement care, but is a social policy imperative for contemporary societies.
The main goal of palliative care is to relieve suffering. Opioids are an essential part of the pharmacological options required to address suffering by helping to relieve the pain and chronic breathlessness that may be experienced by someone with a life-limiting illness. This paper considers the recent history and current issues of the 'opioid crisis' providing recommendations to which regulatory and peak bodies can work with the Australian government, ensuring consistent adherence to WHO guidelines maintaining access to evidence based opioid management for palliative care patients whilst actively avoiding unintended suffering restricted access can cause. The recommendations are as follows:Review of the Palliative Care schedule of the Pharmaceutical Benefit Scheme Support of prescribers with current evidence, clinical practice guidelines and regulatory frameworks National opioid prescribing policies promoting linkages between palliative care and pain and addiction specialists. National real time monitoring of all opioid prescriptions Palliative care involvement in all opioids stewardship programs in acute services. Reform Medical Benefits Schedule to improve access for primary and other speciality practitioners to provide palliative care services. Compulsory palliative care education in undergraduate medical, nursing and allied health tertiary courses. Adequate, consistent stock of evidence based opioids for palliative care in community pharmacies and residential aged care facilities.These recommendations provide the regulatory guidance required to ensure persons with life limiting illness have continued access to safe and effective medication that can relieve suffering.
BACKGROUND: The objective of this study was to understand how aged care home health professionals perceive antimicrobial use near the end of life and how they perceive potential antimicrobial stewardship activities near the end of life in aged care homes.
METHODS: Qualitative semi-structured interviews were undertaken with general practitioners, nurses, and pharmacists who provide routine care in aged care homes in Victoria, Australia. Interviews were coded using frameworks for understanding behavior change.
RESULTS: Themes were established within 14 interviews, and an additional 6 interviews were undertaken to ensure thematic saturation. Two major themes emerged: (i) Antimicrobial stewardship activities near the end of life in aged care homes need to enable aged care home nurses to make decisions substantiated by evidence-based clinical knowledge. Antimicrobial stewardship should clearly be part of an aged care home nurse's role, and accreditation standards provide powerful motivation for behavior change. (ii) Antimicrobial stewardship activities near the end of life in aged care homes must address family confidence in resident wellbeing. Antimicrobial stewardship activities should be inclusive of family involvement, and messages should highlight the point that antimicrobial stewardship improves care.
CONCLUSIONS: Antimicrobial stewardship activities that reinforce evidence-based clinical decision-making by aged care home nurses and address family confidence in resident wellbeing are required near the end of life in aged care homes. Accreditation standards are important motivators for behavior change in aged care homes.
OBJECTIVE: The barriers and enablers to the uptake of advance care plans has been well documented but more so in metropolitan health services. Rural and regional areas have their own challenges of higher rates of chronic illness and an aging population when considering end of life care. This study aimed to explore the creation of advance care plans in a regional location that has service links to smaller health services.
DESIGN: A qualitative study involving thematic analysis of interview data.
SETTING: A regional local government area in Victoria, Australia.
PARTICIPANTS: Twelve representatives from rural and regional health services, including hospital, private practice and community organisation staff.
MAIN OUTCOME MEASURES: Barriers and enablers to the creation of advance care planning documents.
RESULTS: The data analysis yielded two main identified themes around Plan creation and communication of patient wishes: system and societal challenges to the creation and communication in advance care planning; and rural communities' expectation of the health service-patient relationship and advance care planning.
CONCLUSION: Although barriers to advance care planning are well known, rural and regional practitioners need to be aware of the effect long-term continuity of care from health practitioners and connections with health services has on advance care plan creation, and whether the paucity of written Plans effects end-of-life care. A potential solution was seen in the pending linkages to the national electronic patient record.
Background: The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty.
Methods: A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty.
Results: Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care.
Conclusions: Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.
BACKGROUND: End-of-life discussions often are not initiated until close to death, even in the presence of life-limiting illness or frailty. Previous research shows that doctors may not explicitly verbalize approaching end-of-life in the foreseeable future, despite shifting their focus to comfort care. This may limit patients' opportunity to receive information and plan for the future. General Practitioners (GPs) have a key role in caring for increasing numbers of patients approaching end-of-life.
OBJECTIVE: To explore GPs' thought processes when deciding whether to initiate end-of-life discussions.
METHODS: A qualitative approach was used. We purposively recruited 15 GPs or GP trainees from South-East Queensland, Australia, and each participated in a semi-structured interview. Transcripts were analyzed using inductive thematic analysis.
RESULTS: Australian GPs believe they have a responsibility to initiate end-of-life conversations, and identify several triggers to do so. Some also describe caution in raising this sensitive topic, related to patient, family, cultural and personal factors.
CONCLUSIONS: These findings enable the development of approaches to support GPs to initiate end-of-life discussions that are cognizant both of GPs' sense of responsibility for these discussions, and factors that may contribute to caution initiating them, such as anticipated patient response, cultural considerations, societal taboos, family dynamics and personal challenges to doctors.
Background: There is considerable interest in the use of cannabinoids for symptom control in palliative care, but there is little high-quality evidence to guide clinical practice.
Objectives: Assess the feasibility of using global symptom burden measures to assess response to medicinal cannabis, to determine median tolerated doses of cannabidiol (CBD) and tetrahydrocannabinol (THC), and to document adverse events (AEs).
Design: Prospective two-arm open-label pilot trial of escalating doses of CBD and THC oil.
Setting/Subjects: Participants had advanced cancer and cancer-related symptoms in a palliative and supportive care service in an Australian cancer center.
Measurements: The main outcome measures were the number of participants screened and randomized over the time frame, the number of participants completing days 14 and 28 and providing total symptom distress scores (TSDSs) (measured using the Edmonton Symptom Assessment Scale), and the change from baseline of the TSDS at day 14.
Results: Of the 21 participants enrolled (CBD, n = 16; THC, n = 5), 18 (86%) completed the primary outcome measure at day 14 and 8 completed at day 28. The median maximum tolerated doses were CBD, 300 mg/day (range 100–600 mg); THC, 10 mg/day (range 5–30 mg). Nine of 21 patients (43%) met the definition of response (=6 point reduction in TSDS). Drowsiness was the most common AE.
Conclusions: Trials of medicinal cannabis in advanced cancer patients undergoing palliative care are feasible. The doses of THC and CBD used in this study were generally well tolerated and the outcome measure of total symptom distress is promising as a measure of overall symptom benefit. Trial registration: ACTRN12618001205224.
Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications.
Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis.
Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex.
Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included.
Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts.
Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.
Background: Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals’ role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered.
Aim: To explore end-of-life care professionals’ attitudes towards voluntary assisted dying 6 months prior to vote on legalization.
Design: Qualitative study using textual data collected through semi-structured interviews. Purposive sampling strategy used to collect a broad representation of perspectives. Audio-recorded interviews were transcribed verbatim and subjected to qualitative descriptive analysis techniques.
Participants: A total of 16 health professionals with experience in caring for people with life-limiting illness.
Results: Participants reported two overarching positions grounded in differing moral philosophies with compelling arguments both for and against legalization of voluntary assisted dying. A third and common line of argument emerged from areas of shared concern and uncertainty about the practical consequences of introducing voluntary assisted dying. While a diversity of opinion was evident, all participants advocated for more public education and funding into end-of-life care services to make high-quality care equitable and widely available.
Conclusion: Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care.
OBJECTIVE: The objective of this paper is to explore the ethical and legal validity of advance directives that request the voluntary stopping of eating and drinking against a backdrop of late-stage dementia.
METHOD: Doctrinal research and analysis of primary and secondary materials including Australian legislation, Australian case law and journal articles was undertaken.
RESULTS: There is legal uncertainty in Australia around whether an advance directive to voluntarily stop eating and drinking will be followed should the adult become incompetent.
CONCLUSION: Voluntary stopping of eating and drinking should be viewed in law as a form of "treatment" that competent adults can nominate in advance directives, thereby providing dementia patients with the opportunity to choose in advance, if they wish, to end their life legally, with dignity and comfort, and in a manner that does not implicate others in criminal behaviour such as assisted suicide, acceleration of death or euthanasia.
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care.
AIM: To develop a prompt list suitable for paediatric palliative care.
DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups.
PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service.
RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list.
CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
Objective: The aim of this study was to identify the challenges anticipated by clinical staff in two Melbourne health services in relation to the legalisation of voluntary assisted dying in Victoria, Australia.
Methods: A qualitative approach was used to investigate perceived challenges for clinicians. Data were collected after the law had passed but before the start date for voluntary assisted dying in Victoria. This work is part of a larger mixed-methods anonymous online survey about Victorian clinicians' views on voluntary assisted dying. Five open-ended questions were included in order to gather text data from a large number of clinicians in diverse roles. Participants included medical, nursing and allied health staff from two services, one a metropolitan tertiary referral health service (Service 1) and the other a major metropolitan health service (Service 2). The data were analysed thematically using qualitative description.
Results: In all, 1086 staff provided responses to one or more qualitative questions: 774 from Service 1 and 312 from Service 2. Clinicians anticipated a range of challenges, which included burdens for staff, such as emotional toll, workload and increased conflict with colleagues, patients and families. Challenges regarding organisational culture, the logistics of delivering voluntary assisted dying under the specific Victorian law and how voluntary assisted dying would fit within the hospital's overall work were also raised.
Conclusions: The legalisation of voluntary assisted dying is anticipated to create a range of challenges for all types of clinicians in the hospital setting. Clinicians identified challenges both at the individual and system levels.What is known about the topic? Voluntary assisted dying became legal in Victoria on 19 June 2019 under the Voluntary Assisted Dying Act 2017. However there has been little Victorian data to inform implementation.What does this paper add? Victorian hospital clinicians anticipate challenges at the individual and system levels, and across all clinical disciplines. These challenges include increased conflict, emotional burden and workload. Clinicians report concerns about organisational culture, the logistics of delivering voluntary assisted dying under the specific Victorian law and effects on hospitals' overall work. What are the implications for practitioners? Careful attention to the breadth of staff affected, alongside appropriate resourcing, will be needed to support clinicians in the context of this legislative change.
Advance care planning (ACP) has been shown to improve end-of-life care, yet uptake remains limited. Interventions aimed at increasing ACP uptake have often used a 'specialist ACP facilitator' model. The present qualitative study appraised the components of an ACP facilitator intervention comprising nurse-led patient screening and ACP discussions, as well as factors associated with the successful implementation of this model in primary care and acute hospital settings across rural and metropolitan Western Australia. Semistructured interviews were undertaken with 17 health professionals who were directly or indirectly involved in the facilitator ACP intervention among patients with severe respiratory disease. Additional process data (nurse facilitator role description, agreements with participating sites) were used to describe the nurse facilitator role. The interview data identified factors associated with successful implementation, including patient factors, health professional factors, ACP facilitator characteristics and the optimal settings for the intervention. The primary care setting was seen as most appropriate, and time limitations were a key consideration. Factors associated with successful implementation included trusting relationships between the nurse facilitator and referring doctor, as well as opportunities for meaningful encounters with patients. This study suggests a model of ACP nurse facilitation based in primary care may be an acceptable and effective method of increasing ACP uptake.
This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.
BACKGROUND: Rapid frailty screening remains problematic in primary care. The diagnostic test accuracy (DTA) of several screening instruments has not been sufficiently established. We evaluated the DTA of several screening instruments against two reference standards: Fried's Frailty Phenotype [FP] and the Adelaide Frailty Index [AFI]), a self-reported questionnaire.
METHODS: DTA study within three general practices in South Australia. We randomly recruited 243 general practice patients aged 75+ years. Eligible participants were 75+ years, proficient in English and community-dwelling. We excluded those who were receiving palliative care, hospitalised or living in a residential care facility.We calculated sensitivity, specificity, predictive values, likelihood ratios, Youden Index and AUC for: Edmonton Frail Scale [EFS], FRAIL Scale Questionnaire [FQ], Gait Speed Test [GST], Groningen Frailty Indicator [GFI], Kihon Checklist [KC], Polypharmacy [POLY], PRISMA-7 [P7], Reported Edmonton Frail Scale [REFS], Self-Rated Health [SRH] and Timed Up and Go [TUG]) against FP [3+ criteria] and AFI [> 0.21].
RESULTS: We obtained valid data for 228 participants, with missing scores for index tests multiply imputed. Frailty prevalence was 17.5% frail, 56.6% pre-frail [FP], and 48.7% frail, 29.0% pre-frail [AFI]. Of the index tests KC (Se: 85.0% [70.2 - 94.3]; Sp: 73.4% [66.5 - 79.6]) and REFS (Se: 87.5% [73.2 - 95.8]; Sp: 75.5% [68.8 - 81.5]), both against FP, showed sufficient diagnostic accuracy according to our pre-specified criteria.
CONCLUSIONS: Two screening instruments - the KC and REFS, show the most promise for wider implementation within general practice, enabling a personalised approach to care for older people with frailty.
This study aimed to describe Australian long-term care (LTC) personnel’s knowledge and attitudes concerning palliative care for residents with advanced dementia, and explore relationships with LTC facility/personnel characteristics. An analysis was undertaken of baseline data from a cluster randomised controlled trial of facilitated family case conferencing for improving palliative care of LTC residents with advanced dementia (the ‘IDEAL Study’). Participants included any LTC personnel directly involved in residents’ care. Knowledge and attitudes concerning palliative care for people with advanced dementia were measured using the questionnaire on Palliative Care for Advanced Dementia. Univariate and multivariate analyses explored relationships between personnel knowledge/attitudes and facility/personnel characteristics. Of 307 personnel in the IDEAL Study, 290 (94.5%) from 19/20 LTCFs provided sufficient data for inclusion. Participants included 9 (2.8%) nurse managers, 59 (20.5%) registered nurses, 25 (8.7%) enrolled nurses, 187 (64.9%) assistants in nursing/personal care assistants and 9 (3.1%) care service employees. In multivariate analyses, a facility policy not to rotate personnel through dementia units was the only variable associated with more favourable overall personnel knowledge and attitudes. Other variables associated with favourable knowledge were a designation of nursing manager or registered or enrolled nurse, and having a preferred language of English. Other variables associated with favourable attitudes were tertiary level of education and greater experience in dementia care. Like previous international research, this study found Australian LTC personnel knowledge and attitudes regarding palliative care for people with advanced dementia to be associated with both facility and personnel characteristics. Future longitudinal research is needed to better understand the relationships between knowledge and attitudes, as well as between these attributes and quality of care.
AIMS: To explore the intentions of nurses to respond to requests for legal assisted dying.
BACKGROUND: As more Western nations legalise assisted-dying, requests for access will increase across clinical domains. Understanding the intentions of nurses to respond to such requests is important for the construction of relevant policy and practice guidelines.
DATA SOURCES: 45 Australian nurses from aged, palliative, intensive or cancer care settings surveyed in November 2018.
METHOD: Q-methodology studying nurses' evaluations of 49 possible responses to a request for a hastened death. Data consisted of rank-ordered statements analysed by factor analysis with varimax rotation.
FINDINGS: Four distinct types of intentions to respond to requests for assisted-dying: a) refer and support ; b) object to or deflect the request; c) engage and explore the request; or d) assess needs and provide information.
CONCLUSION: The findings underscore the complexity of intentionality in assisted dying nursing practice and differences from other forms of end-of-life care, particularly regarding patient advocacy and conscientious objection. This study enables further research to explore determinants of these intentions. It can also assist the development of professional guidance by linking policy and clinical intentions.
IMPACT: Identified a basic range of nurses' intentions to respond to requests for assisted dying, as there was no evidence at present. Developed a four-fold typology of intentions to respond with most nurses intending to engage in practices that support the requestor and sometimes the request itself. A minority would object to discussing the request. The relatively low level of advocacy within the intended responses selected also is distinctly different from other end-of-life care research findings. This research could assist nursing associations in jurisdictions transitioning to legal assisted-dying to develop guidance ways nurses can frame their responses to requests.
OBJECTIVE: Advance care planning (ACP) assists people to identify their goals, values and treatment preferences for future care. Ideally, preferences are documented in an advance care directive (ACD) and used by doctors to guide medical decision-making should the patient subsequently lose their decision-making capacity. However, studies demonstrate that ACDs are not always adhered to by doctors in clinical practice. We aim to describe the attitudes and perspectives of doctors regarding ACD adherence and the utility of ACDs in clinical practice.
DESIGN: Face-to-face semistructured interviews were conducted using three case-based vignettes to explore doctors' decision-making and attitudes towards ACDs. Transcripts were analysed using a thematic analysis.
SETTING: Doctors from a variety of medical specialties and with varying experience levels were recruited from a large tertiary hospital in Melbourne, Australia.
PARTICIPANTS: A total of 21 doctors were interviewed, 48% female (10/21). Most (19/21) reported having experience using ACDs.
RESULTS: Four themes were identified: aligning with patient preferences (avoiding unwanted care, prioritising autonomy and anticipating family opposition), advocating best interests (defining futile care, relying on clinical judgement, rejecting unreasonable decisions and disregarding legal consequences), establishing validity (doubting rigour of the decision-making process, questioning patients' ability to understand treatment decisions, distrusting outdated preferences and seeking confirmation) and translating written preferences into practice (contextualising patient preferences, applying subjective terminology and prioritising emergency medical treatment).
CONCLUSIONS: ACDs provide doctors with opportunities to align patient preferences with treatment and uphold patient autonomy. However, doctors experience decisional conflict when attempting to adhere to ACDs in practice, especially when they believe that adhering to the ACD is not in the patients' best interests, or if they doubt the validity of the ACD. Future ACP programmes should consider approaches to improve the validity and applicability of ACDs. In addition, there is a need for ethical and legal education to support doctors' knowledge and confidence in ACP and enacting ACDs.
The management of medications in persons with frailty presents challenges. There is evidence of inappropriate prescribing and a lack of consensus among healthcare professionals on the judicious use of medications, particularly for patients with more severe frailty. This study reviews the evidence on the use of commonly prescribed pharmacological treatments in advanced frailty based on a questionnaire of prescribing practices and attitudes of healthcare professionals at different stages in their careers, in different countries. A convenience sample of those attending hospital grand rounds in Ireland, Canada and Australia/New Zealand (ANZ) were surveyed on the management of 18 medications in advanced frailty using a clinical vignette (man with severe dementia, Clinical Frailty Scale 7/9). Choices were to continue or discontinue (stop now or later) medications. In total, 298 respondents from Ireland (n = 124), Canada (n = 110), and ANZ (n = 64) completed the questionnaire, response rate 97%, including 81 consultants, 40 non-consultant hospital doctors, 134 general practitioners and 43 others (nurses, pharmacists, and medical students). Most felt that statins (88%), bisphosphonates (77%) and cholinesterase inhibitors (76%) should be discontinued. Thyroid replacement (88%), laxatives (83%) and paracetamol (81%) were most often continued. Respondents with experience in geriatric, palliative and dementia care were significantly more likely to discontinue medications. Age, gender and experience working in nursing homes did not contribute to the decision. Reflecting the current literature, there was no clear consensus on inappropriate prescribing, although respondents preferentially discontinued medications for secondary prevention. Experience significantly predicted the number and type discontinued, suggesting that education is important in reducing inappropriate prescribing for people in advanced states of frailty.
Terminal sedation is a medically induced coma from which the patient does not recover. Professional guidelines for palliative care restrict its use to within a few days of death. The law relating to its use in Australia is governed by the law of homicide, assisted suicide and the law of trespass. In this article, I argue that the law in Australia does not justify the restrictions on its use imposed by the professional guidelines, and that, ethically and legally, it can be made available to patients with a terminal disease, those who are likely to suffer serious physical or existential pain by remaining conscious, and for those who refuse food and water. Its use should be regulated to ensure that those asking for it are competent to do so, and that they are suffering from a medical condition that makes life intolerable for them.