Written evidence submitted by Dr Lesley Williamson and Professor Katherine Sleeman, on behalf of the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London (ADY0402)

The Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, is a world-leading palliative care institute, integrating research, education, and clinical care. It is one of a handful of centres across the world dedicated to delivering high quality palliative and end of life care research and has informed palliative care policy and practice in the UK and globally.

With clinical and academic expertise in palliative care, we would like to offer evidence that may facilitate the Committee’s inquiry. The evidence included in this submission responds primarily to question one regarding palliative care. We provide evidence to the other questions where it is relevant to palliative care. We have drawn on evidence from the Cicely Saunders Institute, as well as from other researchers in the UK and elsewhere.

1.1    To what extent do people in England and Wales have access to good palliative care?

Palliative care can improve symptom burden and quality of life for people affected by serious illness.1, 2 It can enhance their experiences of security,3 increase the likelihood of dying at home,4 and reduce hospitalisation towards the end of life.5-7 Importantly, palliative care can be provided at the same or lower overall cost.8, 9 In England and Wales, around three quarters of people who die would benefit from palliative care.10 Population ageing means that 160,000 more people are expected to need palliative care by 2040, up to a 43% increase compared to 2020.11

1.1.1         Out of hours services to support people in their own homes are variable and fragmented across the UK.12 Only 1 in 4 UK areas provides access to designated palliative care phone lines, even though this has been a NICE recommendation since 2011.12

1.1.2         The further away a patient lives from a hospice, the less likely they are to die in a hospice. This effect is greater in rural than urban areas.13 The dose-response association is also observed in different regions of England.14

1.1.3         Provision of end-of-life care can be challenging in care homes due to uncertain illness trajectories,15, 16 variable access to external support,15, 16 and unaddressed educational and emotional needs.17 During the Covid-19 pandemic, care home staff reported making high stakes decisions in isolation, with variable support from health professionals or coherent guidance.18 The NIHR funded CovPall Care Homes study generated ten policy recommendations for palliative and end of life care in care homes.19

1.1.4         There are known inequalities in access to palliative care services across a range of patient characteristics,20, 21 including:

1.2    How can palliative care be improved?

The Cicely Saunders International Palliative Care Action Plan identifies the major challenges facing the palliative care system, and outlines evidence-based solutions.35 It identifies seven areas for improvement and outlines 24 achievable actions to improve the care, increase the efficiency, and future-proof the palliative care system against accelerated demand.35 Additional evidence is presented here, complementing the seven areas of improvement.

1.2.1         Provide palliative care expertise in places where people are cared for: hospitals, care homes, hospices and at home

1.2.2         Make joined up care a reality

1.2.3         Empower patients and carers to have greater choice and control over the things that are important to them

1.2.4         Invest in community care services

1.2.5         Provide healthcare professionals and carers with high-quality palliative care training

1.2.6         Use outcome measures to embed a system of continuous learning and improvement

1.2.7         Fund world-leading research into palliative care

1.3    Would improvements in palliative care negate some of the arguments for assisted dying/assisted suicide?

Given the complexity of serious illness, approaches to alleviate suffering must not be reduced to a binary choice between palliative care and assisted dying / assisted suicide (AD/AS). Improving equitable access to high-quality palliative care is urgently needed, irrespective of any move towards legalisation of AD/AS. This cannot be considered in isolation of broader health and social contributors to suffering among people with advanced illness.

1.3.1         The needs of people affected by serious illness are diverse and complex. In conceptualising this complexity, research suggests a need to consider pre-existing and cumulative complexity, the dynamic aspects of complexity, invisible complexity, service-/ system-level factors and societal influences to consider and meet patients’ needs effectively.67 In addition, family have important influences over shaping the care preferences of older people with illness.68

1.3.2         The experience of serious illnesses and approaching the end-of-life can be complicated by external factors, which cannot be managed by palliative care alone. Evidence from  Canada indicates that assessors for Medical Assistance in Dying (MAiD) infrequently encountered patients choosing MAiD due to unmet need, but many encountered situations in which their patients’ suffering had been made worse due to social determinants of health.69

1.3.3         Secondary analysis of interviews with patients with a range of serious illness shows that uncertainty is a central feature of the illness experience and affects patients’ information needs, preferences, and future priorities for care. Complexity and unpredictability of illness were a major part of the uncertainty experience.70 Better understanding and communication around uncertainty in the clinical setting is needed to better meet and address needs, help to engage and empower patients, and facilitate patient-centred care.70, 71

1.3.4         Issues of complexity and uncertainty extend to advance care planning. End-of-life care preferences can change over time.72 In a study with older adults with terminal cancer, findings showed that the will to live fluctuated towards the end of life, influenced by distressing symptoms.73 A study carried out in South London found that most patients expressing a desire for hastened death experience a reduction in this following palliative care.74

2              What can be learnt from the evidence in countries where assisted dying / assisted suicide is legal?

In this section we wish to highlight two pieces of evidence relating to palliative care.

2.1              In Canada, it has been found that palliative care resources were disproportionately consumed by MAiD requests, while non-MAiD patients had reduced access to palliative care. Research must prioritise how AD/AS legislation might indirectly affect care for people nearing end-of-life, with strategies to mitigate adverse impacts.75

2.2              Data collected and routinely reported in jurisdictions where AD/AS is legal is varied and information on potential harms or complications of assisted dying is incomplete. These data mostly come from simple retrospective reports completed by the doctor who supplied the lethal prescription, without independent verification or prospective data collection. Only around half of official reports document whether patients were enrolled in hospice or palliative care services. Where this information is reported, there is no indication of duration or scope of involvement.76

4              What, if any, are the physical and mental health criteria which would make an individual eligible to access assisted dying / assisted suicide services?

In this section we would like to highlight some of the evidence around prognostication.

4.1               In the Oregon model of AD/AS, which is followed in several states of America and elsewhere, eligibility includes a prognosis of six months or less.77 However, prognostication is not exact.78 Therefore, eligibility for AD/AS based on proximity to death may be impractical. It also carries risk of discrimination against people who have terminal illness that are more chronically progressive, such as neurological illness.79 We note that in jurisdictions that have legalised AD/AS, arguments have been made that safeguards are discriminatory.80

4.2               Prognosis is often difficult to estimate, particularly for conditions with more unpredictable trajectories, such as chronic respiratory disease, organ failure, neurodegenerative disease, or frailty. Poor prognostication can impede timely end-of-life care discussions and referral to palliative care,81 and hospice use.21 The ‘surprise question’, a prognostic tool to help identify people with palliative care needs, is found to be of variable accuracy.82




1.              Kavalieratos D, Corbelli J, Zhang D, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. Jama 2016; 316: 2104-2114. DOI: https://doi.org/10.1001/jama.2016.16840.

2.              Abernethy AP, Currow DC, Fazekas BS, et al. Specialized palliative care services are associated with improved short-and long-term caregiver outcomes. Supportive Care in Cancer 2008; 16: 585-597. DOI: https://doi.org/10.1007%2Fs00520-007-0342-8.

3.              Sarmento VP, Gysels M, Higginson IJ, et al. Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers. BMJ supportive & palliative care 2017; 7: 00-00. DOI: http://dx.doi.org/10.1136/bmjspcare-2016-001141.

4.              Gomes B, Calanzani N, Curiale V, et al. Effectiveness and cost‐effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews 2013. DOI: https://doi.org/10.1002/14651858.CD007760.pub2.

5.              Henson LA, Gao W, Higginson IJ, et al. Emergency department attendance by patients with cancer in their last month of life: a systematic review and meta-analysis. J Clin Oncol 2015; 33: 370-376. DOI: https://doi.org/10.1200/JCO.2014.57.3568.

6.              Bone AE, Evans CJ, Etkind SN, et al. Factors associated with older people’s emergency department attendance towards the end of life: a systematic review. Eur J Public Health 2019; 29: 67-74. DOI: https://doi.org/10.1093/eurpub/cky241.

7.              Williamson LE, Evans CJ, Cripps RL, et al. Factors associated with emergency department visits by people with dementia near the end of life: a systematic review. J Am Med Dir Assoc 2021; 22: 2046-2055. e2035. DOI: https://doi.org/10.1016/j.jamda.2021.06.012.

8.              Smith S, Brick A, O’Hara S, et al. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliative medicine 2014; 28: 130-150. DOI: https://doi.org/10.1177/0269216313493466.

9.              May P, Normand C, Cassel JB, et al. Economics of palliative care for hospitalized adults with serious illness: a meta-analysis. JAMA internal medicine 2018; 178: 820-829. DOI: https://doi.org/10.1001/jamainternmed.2018.0750.

10.              Murtagh FE, Bausewein C, Verne J, et al. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliative medicine 2014; 28: 49-58. DOI: https://doi.org/10.1177/0269216313489367.

11.              Etkind SN, Bone AE, Gomes B, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC medicine 2017; 15: 1-10. DOI: https://dx.doi.org/10.1186%2Fs12916-017-0860-2.

12.              Pask S, Davies JM, Mohamed A, et al. Better End of Life 2022, Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers (Research Report), https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better-end-of-life-report-2022.pdf (2022).

13.              Chukwusa E, Verne J, Polato G, et al. Urban and rural differences in geographical accessibility to inpatient palliative and end-of-life (PEoLC) facilities and place of death: a national population-based study in England, UK. International journal of health geographics 2019; 18: 1-11. DOI: https://doi.org/10.1186/s12942-019-0172-1.

14.              Chukwusa E, Yu P, Verne J, et al. Regional variations in geographic access to inpatient hospices and Place of death: A Population-based study in England, UK. PloS one 2020; 15: e0231666. DOI: https://doi.org/10.1371/journal.pone.0231666.

15.              Handley M, Goodman C, Froggatt K, et al. Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision‐a prospective study. Health & social care in the community 2014; 22: 22-29. DOI: https://doi.org/10.1111/hsc.12055.

16.              Alcorn G, Murray SA and Hockley J. Care home residents who die in hospital: exploring factors, processes and experiences. Age and Ageing 2020; 49: 468-480. DOI: https://doi.org/10.1093/ageing/afz174.

17.              Livingston G, Pitfield C, Morris J, et al. Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes. International journal of geriatric psychiatry 2012; 27: 643-650. DOI: https://doi.org/10.1002/gps.2772.

18.              Marshall F, Gordon A, Gladman JR, et al. Care homes, their communities, and resilience in the face of the COVID-19 pandemic: interim findings from a qualitative study. BMC geriatrics 2021; 21: 1-10. DOI: https://doi.org/10.1186/s12877-021-02053-9.

19.              Sleeman K, Bradshaw A, Ostler S, et al. Strengthening palliative and end-of-life care in care homes: An action plan to meet current and future needs. Policy recommendations from the CovPall Crae Homes study, https://www.kcl.ac.uk/research/assets/project-upload-2021/covpall-ch-policy-briefing-final.pdf (2022).

20.              Dixon J, King D, Matosevic T, et al. Equity in the provision of palliative care in the UK: review of evidence, https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf (2015).

21.              Tobin J, Rogers A, Winterburn I, et al. Hospice care access inequalities: a systematic review and narrative synthesis. BMJ Supportive & Palliative Care 2022; 12: 142-151. DOI: http://dx.doi.org/10.1136/bmjspcare-2020-002719.

22.              Allsop MJ, Ziegler LE, Mulvey MR, et al. Duration and determinants of hospice-based specialist palliative care: a national retrospective cohort study. Palliative medicine 2018; 32: 1322-1333. DOI: https://doi.org/10.1177/0269216318781417.

23.              Nicholson C, Davies JM, George R, et al. What are the main palliative care symptoms and concerns of older people with multimorbidity?—A comparative cross-sectional study using routinely collected Phase of Illness, Australia-modified Karnofsky Performance Status and Integrated Palliative Care Outcome Scale data. Ann Palliat Med 2018; 7: S164-S175. DOI: https://doi.org/10.21037/apm.2018.06.07.

24.              Chidiac C, Feuer D, Flatley M, et al. The need for early referral to palliative care especially for black, Asian and minority ethnic groups in a COVID-19 pandemic: findings from a service evaluation. Palliative Medicine 2020; 34: 1241-1248. DOI: https://doi.org/10.1177/0269216320946688.

25.              Bajwah S, Koffman J, Hussain J, et al. Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study. BMJ Supportive & Palliative Care 2021. DOI: https://doi.org/10.1136/bmjspcare-2021-003083.

26.              Mayland CR, Powell RA, Clarke GC, et al. Bereavement care for ethnic minority communities: a systematic review of access to, models of, outcomes from, and satisfaction with, service provision. PLoS One 2021; 16: e0252188. DOI: https://doi.org/10.1371/journal.pone.0252188.

27.              Davies JM, Sleeman KE, Leniz J, et al. Socioeconomic position and use of healthcare in the last year of life: a systematic review and meta-analysis. PLoS Med 2019; 16: e1002782. DOI: https://doi.org/10.1371/journal.pmed.1002782.

28.              Sleeman KE, Leniz J, Davies JM, et al. Fairer Care at Home: The Covid-19 pandemic: a stress trest for palliative and end of life care in England, https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beol-2022/h903a-beol-england.pdf (2022).

29.              Wakefield D, Kane CE, Chidiac C, et al. Why does palliative care need to consider access and care for LGBTQ people? 2021; 35: 1730-1732. DOI: https://doi.org/10.1177/02692163211055011.

30.              Rosa WE, Roberts KE, Braybrook D, et al. Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review. Palliative Medicine 2022: 02692163221124426. DOI: https://doi.org/10.1177/02692163221124426.

31.              Lau C, Meaney C, Morgan M, et al. Disparities in access to palliative care facilities for patients with and without cancer: A retrospective review. Palliative Medicine 2021; 35: 1191-1201. DOI: https://doi.org/10.1177/02692163211007387.

32.              Moens K, Higginson IJ, Harding R, et al. Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. Journal of pain and symptom management 2014; 48: 660-677. DOI: https://doi.org/10.1016/j.jpainsymman.2013.11.009.

33.              Sleeman KE, Davies JM, Verne J, et al. The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993–2012. Palliative medicine 2016; 30: 45-53. DOI: https://doi.org/10.1177/0269216315585064.

34.              Nomis official census and labour market statistics. Mortality statistics - underlying cause, sex and age (limited to LC02 cancer deaths), https://www.nomisweb.co.uk/query/construct/summary.asp?mode=construct&version=0&dataset=161 (2021).

35.              Cicely Saunders International. You Matter Because You Are You: An action plan for better palliative care https://csiweb.pos-pal.co.uk/csi-content/uploads/2021/01/Cicely-Saunders-Manifesto-A4-multipage_Jan2021-2.pdf (2021).

36.              Bone AE, Gomes B, Etkind SN, et al. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative medicine 2018; 32: 329-336. DOI: https://doi.org/10.1177/0269216317734435.

37.              Marie Curie. Better end of life 2021: Dying, death and bereavement during Covid-19 (research report), https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-research-report.pdf (2021).

38.              Groeneveld EI, Cassel JB, Bausewein C, et al. Funding models in palliative care: lessons from international experience. Palliative medicine 2017; 31: 296-305. DOI: https://doi.org/10.1177/0269216316689015.

39.              CovPall_CareHomes. Unpublished data - for more information, please contact: Katherine.Sleeman@kcl.ac.uk

40.              Bayly J, Bone AE, Ellis-Smith C, et al. Common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions: a tertiary systematic review. BMJ open 2021; 11: e048417. DOI: http://dx.doi.org/10.1136/bmjopen-2020-048417.

41.              Dunleavy L, Preston N, Bajwah S, et al. ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall). Palliative medicine 2021; 35: 814-829. DOI: https://doi.org/10.1177/02692163211000660.

42.              Sleeman KE, Timms A, Gillam J, et al. Priorities and opportunities for palliative and end of life care in United Kingdom health policies: a national documentary analysis. BMC Palliat Care 2021; 20: 1-10. DOI: https://doi.org/10.1186/s12904-021-00802-6.

43.              Chambers RL, Pask S, Higginson IJ, et al. Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. Health Open Research 2022; 4: 19. DOI: https://doi.org/10.12688/amrcopenres.13079.2.

44.              Brinkman-Stoppelenburg A, Rietjens JA and Van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliative medicine 2014; 28: 1000-1025. DOI: https://doi.org/10.1177/0269216314526272.

45.              Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life: associations with end-of-life conversations. Archives of internal medicine 2009; 169: 480-488. DOI: https://doi.org/10.1001/archinternmed.2008.587.

46.              Bradshaw A, Dunleavy L, Walshe C, et al. Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: an analysis of the UK CovPall survey data from specialist palliative care services. Palliative Medicine 2021; 35: 1225-1237. DOI: https://doi.org/10.1177/02692163211017387.

47.              Etkind SN, Lovell N, Nicholson CJ, et al. Finding a ‘new normal’following acute illness: A qualitative study of influences on frail older people’s care preferences. Palliative Medicine 2019; 33: 301-311. DOI: https://doi.org/10.1177/0269216318817706.

48.              Luta X, Diernberger K, Bowden J, et al. Healthcare trajectories and costs in the last year of life: a retrospective primary care and hospital analysis. BMJ Supportive & Palliative Care 2020. DOI: http://dx.doi.org/10.1136/bmjspcare-2020-002630.

49.              Isenberg SR, Meaney C, May P, et al. The association between varying levels of palliative care involvement on costs during terminal hospitalizations in Canada from 2012 to 2015. BMC health services research 2021; 21: 1-12. DOI: https://doi.org/10.1186/s12913-021-06335-1.

50.              Youens D and Moorin R. The impact of community-based palliative care on utilization and cost of acute care hospital services in the last year of life. Journal of Palliative Medicine 2017; 20: 736-744. DOI: http://doi.org/10.1089/jpm.2016.0417.

51.              Evans CJ, Bone AE, Yi D, et al. Community-based short-term integrated palliative and supportive care reduces symptom distress for older people with chronic noncancer conditions compared with usual care: a randomised controlled single-blind mixed method trial. International Journal of Nursing Studies 2021; 120: 103978. DOI: https://doi.org/10.1016/j.ijnurstu.2021.103978.

52.              Higginson IJ, Bausewein C, Reilly CC, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. The Lancet Respiratory Medicine 2014; 2: 979-987. DOI: https://doi.org/10.1016/S2213-2600(14)70226-7.

53.              Goodrich J, Tutt L, Firth AM, et al. The most important components of out-of-hours community care for patients at the end of life: A Delphi study of healthcare professionals’ and patient and family carers’ perspectives. Palliative medicine 2022; 36: 1296-1304. DOI: https://doi.org/10.1177/02692163221106284.

54.              Selman LE, Brighton LJ, Robinson V, et al. Primary care physicians’ educational needs and learning preferences in end of life care: a focus group study in the UK. BMC palliative care 2017; 16: 1-9. DOI: https://doi.org/10.1186/s12904-017-0191-2.

55.              Edmonds PM, Sleeman KE, Lovell N, et al. The impact of and response to the COVID-19 pandemic on a hospital palliative care team. Future Healthcare Journal 2021; 8: 62. DOI: https://doi.org/10.7861%2Ffhj.2020-0131.

56.              Atkin N, Vickerstaff V and Candy B. ‘Worried to death’: the assessment and management of anxiety in patients with advanced life-limiting disease, a national survey of palliative medicine physicians. BMC palliative care 2017; 16: 1-10. DOI: https://doi.org/10.1186/s12904-017-0245-5.

57.              Etkind SN, Daveson BA, Kwok W, et al. Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: does it make a difference? A systematic review. Journal of pain and symptom management 2015; 49: 611-624. DOI: https://doi.org/10.1016/j.jpainsymman.2014.07.010.

58.              Antunes B, Rodrigues PP, Higginson IJ, et al. Determining the prevalence of palliative needs and exploring screening accuracy of depression and anxiety items of the integrated palliative care outcome scale–a multi-centre study. BMC Palliative Care 2020; 19: 1-9. DOI: https://doi.org/10.1186/s12904-020-00571-8.

59.              Higginson IJ, Hocaoglu MB, Fraser LK, et al. Symptom control and survival for people severely ill with COVID: a multicentre cohort study (CovPall-Symptom). Journal of pain and symptom management 2022; 64: 377-390. DOI: https://doi.org/10.1016/j.jpainsymman.2022.06.009.

60.              Ramsenthaler C, Gao W, Siegert RJ, et al. Symptoms and anxiety predict declining health-related quality of life in multiple myeloma: a prospective, multi-centre longitudinal study. Palliative Medicine 2019; 33: 541-551. DOI: https://doi.org/10.1177/0269216319833588.

61.              Kinley J, Ellis-Smith C, Hurt M, et al. A collaborative approach in dementia care to improve clinical effectiveness and priorities for research through audit. International Journal of Palliative Nursing 2019; 25: 588-595. DOI: https://doi.org/10.12968/ijpn.2019.25.12.588.

62.              Koffman J, Yorganci E, Yi D, et al. Managing uncertain recovery for patients nearing the end of life in hospital: a mixed-methods feasibility cluster randomised controlled trial of the AMBER care bundle. Trials 2019; 20: 1-18. DOI: https://doi.org/10.1186/s13063-019-3612-0.

63.              Bradshaw A, Santarelli M, Mulderrig M, et al. Implementing person-centred outcome measures in palliative care: an exploratory qualitative study using normalisation process theory to understand processes and context. Palliative medicine 2021; 35: 397-407. DOI: https://doi.org/10.1177/0269216320972049.

64.              Pinto C, Bristowe K, Witt J, et al. Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study. Annals of palliative medicine 2018; 7: S137-S150. DOI: https://doi.org/10.21037/apm.2018.09.02.

65.              Lind S, Wallin L, Fürst CJ, et al. The integrated palliative care outcome scale for patients with palliative care needs: factors related to and experiences of the use in acute care settings. Palliative & supportive care 2019; 17: 561-568. DOI: https://doi.org/10.1017/S1478951518001104.

66.              Sleeman KE, Gomes B and Higginson IJ. Research into end-of-life cancer care—investment is needed. The Lancet 2012; 379: 519. DOI: https://doi.org/10.1016/S0140-6736(12)60230-X.

67.              Pask S, Pinto C, Bristowe K, et al. A framework for complexity in palliative care: a qualitative study with patients, family carers and professionals. Palliative medicine 2018; 32: 1078-1090. DOI: https://doi.org/10.1177/0269216318757622.

68.              Etkind SN, Bone AE, Lovell N, et al. Influences on care preferences of older people with advanced illness: a systematic review and thematic synthesis. Journal of the American Geriatrics Society 2018; 66: 1031-1039. DOI: https://doi.org/10.1111/jgs.15272.

69.              Wiebe ER, Kelly M, Spiegel L, et al. Are unmet needs driving requests for Medical Assistance in Dying (MAiD)? A qualitative study of Canadian MAiD providers. Death Studies 2022: 1-7. DOI: https://doi.org/10.1080/07481187.2022.2042754.

70.              Etkind SN, Bristowe K, Bailey K, et al. How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliative medicine 2017; 31: 171-180. DOI: https://doi.org/10.1177/0269216316647610.

71.              Ellis-Smith C, Dawkins M, Gao W, et al. Managing clinical uncertainty in older people towards the end of life: a systematic review of person-centred tools. BMC palliative care 2021; 20: 1-41. DOI: https://doi.org/10.1186/s12904-021-00845-9.

72.              Malhotra C, Bundoc FG, Sim D, et al. Instability in preference for place of death among patients with symptoms of advanced heart failure. Journal of the American Medical Directors Association 2021; 22: 349. e329-349. e334. DOI: https://doi.org/10.1016/j.jamda.2020.05.030.

73.              Chochinov HM, Tataryn D, Clinch JJ, et al. Will to live in the terminally ill. The Lancet 1999; 354: 816-819. DOI: https://doi.org/10.1016/S0140-6736(99)80011-7.

74.              Price A, Lee W, Goodwin L, et al. Prevalence, course and associations of desire for hastened death in a UK palliative population: a cross-sectional study. BMJ supportive & palliative care 2011; 1: 140-148. DOI: http://dx.doi.org/10.1136/bmjspcare-2011-000011.

75.              Mathews JJ, Hausner D, Avery J, et al. Impact of medical assistance in dying on palliative care: a qualitative study. Palliative Medicine 2021; 35: 447-454. DOI: https://doi.org/10.1177/0269216320968517.

76.              Worthington A, Regnard C, Sleeman KE, et al. Comparison of official reporting on assisted suicide and euthanasia across jurisdictions. BMJ Supportive & Palliative Care 2022. DOI: http://dx.doi.org/10.1136/spcare-2022-003944.

77.              Roehr B. Assisted dying around the world. BMJ 2021; 374. DOI: https://doi.org/10.1136/bmj.n2200.

78.              White N, Reid F, Harris A, et al. A systematic review of predictions of survival in palliative care: how accurate are clinicians and who are the experts? PloS one 2016; 11: e0161407. DOI: https://doi.org/10.1371/journal.pone.0161407.

79.              Sleeman K and Chalmers I. Assisted dying: Restricting access to people with fewer than six months to live is discriminatory. BMJ 2019; 367. DOI: https://doi.org/10.1136/bmj.l6093.

80.              McDougall R and Pratt B. Too much safety? Safeguards and equal access in the context of voluntary assisted dying legislation. BMC Medical Ethics 2020; 21: 1-10. DOI: https://doi.org/10.1186/s12910-020-00483-5.

81.              Petrova M, Wong G, Kuhn I, et al. Timely community palliative and end-of-life care: a realist synthesis. BMJ Supportive & Palliative Care 2021. DOI: http://dx.doi.org/10.1136/bmjspcare-2021-003066.

82.              White N, Kupeli N, Vickerstaff V, et al. How accurate is the ‘Surprise Question’at identifying patients at the end of life? A systematic review and meta-analysis. BMC medicine 2017; 15: 1-14. DOI: https://doi.org/10.1186/s12916-017-0907-4.

Jan 2023