In a healthcare system under increasing pressure, can a palliative care commission drive meaningful change?
BMJ 2025; 388 doi: https://doi.org/10.1136/bmj.r610 (Published 27 March 2025) Cite this as: BMJ 2025;388:r610
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Dear Editor
Higginson & Ramjeeawon’s commentary highlights that multidisciplinary, multicomponent, and multi-setting palliative care services achieve the greatest benefits. The 2022 UK Health and Care Act requires palliative care to be commissioned by integrated care boards and specifies that a skilled workforce and appropriate equipment should be available to all patients with palliative care needs. Statutory guidance clearly specifies that teams should have access to a rehabilitation workforce, including physiotherapists and occupational therapists, with expertise in palliative care. However, unlike other medical specialities, physiotherapists or occupational therapists are rarely core members of palliative care multi-disciplinary teams (MDTs). Even in hospices, provision is ad hoc with wide variation across the sector.
When approaching end of life, people still want to be able to live as normally as possible at home and don’t want to be a burden on their families. Losing function in daily activities is associated with symptom burden, reduced independence, increasing demands on family caregivers and is a frequently reported area of unmet need [1]. There is a large increase in secondary care use in the last year of life[2]and frequent admissions are associated with increasing disability[3]. People approaching the end of life and their families often need to be seen more quickly than other patients to maintain function, manage decline and avoid crises[4]. Hospital and community generalist rehabilitation teams may not have the flexibility in referral mechanisms or capacity to identify and prioritise people in a palliative phase of illness while they have time to benefit, which could lead to further loss of function, increased carer burden, and potentially unnecessary hospital admissions. When integrated in palliative care, rehabilitation interventions act synergistically with others provided by the MDT. Rehabilitation contributes value in palliative care for patients and their families during episodic periods of functional recovery and decline, and when permanent physical decline in inevitable. Timely access provides practical, pragmatic and low-cost effective interventions, including exercise[5], symptom self-management[6] and assistive devices[7], while people have time to benefit. Such interventions have potential to reduce the frequency of crisis events associated with poorly managed symptoms, immobility and falls. A multi-national trial of a scalable, short-term model of rehabilitation to optimise functioning and symptom self-management for people with advanced cancer in palliative care, INSPiRE, is currently in progress and will provide further evidence for commissioning MDTs in palliative care[8].
Despite having both policy and research demonstrating the need for integrated rehabilitation in palliative care, we know there is still huge disparity in provision. In the Better End of Life Report from 2024 [9] just 14% of bereaved relatives reported that their loved one had had contact from an occupational therapist and even fewer, 11% had contact with a physiotherapist in the last three months of life.
Investment in a sustainable rehabilitation workforce for specialist and generalist palliative care is needed. Qualifying programmes for rehabilitation professionals need to introduce education and training in palliative care onto the curriculum.
Both palliative care and rehabilitation are key health strategies in World Health Organisation policy on Universal Health Coverage[10]. To optimise synergies for effective palliative care in the UK, we urge the commission and expert panel to ensure that rehabilitation is commissioned as part of multi-disciplinary, multi-component, multi-setting palliative care in the new NHS 10-year plan.
1. Chochinov, H.M., et al., The Landscape of Distress in the Terminally Ill. Journal of Pain and Symptom Management, 2009. 38(5): p. 641-649.
2. Diernberger, K., et al., Healthcare use and costs in the last year of life: a national population data linkage study. BMJ Supportive & Palliative Care, 2021. 14(e1): p. e885-e892.
3. Gill, T.M., et al., The role of intervening hospital admissions on trajectories of disability in the last year of life: prospective cohort study of older people. bmj, 2015. 350.
4. Nottelmann, L., et al., Early, integrated palliative rehabilitation improves quality of life of patients with newly diagnosed advanced cancer: The Pal-Rehab randomized controlled trial. Palliative Medicine, 2021: p. 02692163211015574.
5. Toohey, K., et al., The effects of physical exercise in the palliative care phase for people with advanced cancer: a systematic review with meta-analysis. Journal of Cancer Survivorship, 2023. 17(2): p. 399-415.
6. Brighton, L.J., et al., Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis. Thorax, 2018: p. thoraxjnl-2018-211589.
7. Manning, B., R. Kelly, and K. Broome, Assistive technology in palliative care: a statewide equipment programme. BMJ Supportive & Palliative Care, 2024. 14(e1): p. e500-e503.
8. Bayly, J., et al., Integrated Short-term Palliative Rehabilitation to improve quality of life and equitable care access in incurable cancer (INSPIRE): a multinational European research project. Palliative care and social practice, 2023. 17: p. 26323524231179979.
9. Johansson, T., et al., Time to care: Findings from a nationally representative survey of experiences at the end of life in England and Wales. 2024, Research report. London (UK): Marie Curie. 2024. http://mariecurie. org. uk ….
10. World Health Organisation Regional Office for Europe, Policy brief on integrating rehabilitation into palliative care services. 2023: Copenhagen.
Competing interests: Jo Bayly works in the same department at King's College London as Professor Irene Higginson. Irene Higginson is an investigator on the Inspire Trial.
Dear Editor.
We welcome the timely discussion on the role of the newly established palliative care commission and the Health and Social Care Committee’s expert panel in driving meaningful change in palliative and end-of-life care. Higginson and Ramjeeawon highlight that while the UK has been a pioneer in palliative care, provision remains inconsistent, and many people still die without receiving adequate support [1]. However, we must question whether widely endorsed initiatives which include advance care planning and the increasing role of electronic palliative care coordination systems (EPaCCS) will adequately address the gaps.
A fundamental principle of palliative care is the delivery of care which aligns with individuals’ preferences and priorities. Advance care planning has long been advocated as a mechanism to enable patients to express their values, goals, and treatment preferences, thus improving communication, reducing hospital admissions, and enhancing quality of life [2]. Despite national policy endorsement [3] and the COVID-19 pandemic [4], advance care planning uptake remains limited, often due to healthcare professionals’ discomfort in engaging in end of life care related discussions, time constraints, or systemic barriers. Although there is an intuitive appeal for advance care planning, equipoise is present to what extent it achieves its intended goals [5] or how best to implement it equitably across populations.
Similarly, EPaCCS have been developed as a digital solution to improve the accessibility and sharing of advance care planning records, ensuring that patients’ preferences are known and respected across healthcare settings [6 7]. While promising, their implementation across Integrated Care Boards has been variable, and crucial questions remain unanswered. To what extent do EPaCCS genuinely support decision-making at the end of life? Do they enable patients to receive care in their preferred location? Are they equitably available to all who might benefit? Do they reduce unplanned hospital admissions and improve cost-effectiveness? Rigorously curated and analysed data are urgently required to address these critical gaps by investigating who receives EPaCCS,
how social determinants influence advance care planning content, and the broader impact on patients, their families, health services and society. The now underway PREPARE study [8] aims to explore the characteristics of individuals using EPaCCS, the influence of social determinants on ACP creation and content, and the benefits of EPaCCS for patients, families and health services.
Lastly, evidence is required from implementation science regarding how these complex interventions are embedded into routine practice with fidelity to best serve the patient and their families and to mitigate potential harms [9 10]. Without this knowledge, there is a danger that well-intentioned interventions may be presumed to facilitate helpful end-of-life care decision-making and deliver meaningful improvements in care.
Jonathan Koffman, Professor of Palliative Care, Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, UK
Dr Joanne Droney, The Royal Marsden NHS Foundation Trust, London, UK
1. Higginson IJ, Ramjeeawon N. In a healthcare system under increasing pressure, can a palliative care commission drive meaningful change? BMJ 2025;388:r610. doi: 10.1136/bmj.r610
2. Rietjens JAC, Sudore RL, Connolly M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol 2017;18(9):e543-e51. doi: 10.1016/s1470-2045(17)30582-x [published Online First: 2017/09/09]
3. NHS England. Palliative and End of Life Care Statutory Guidance for Integrated Care Boards (ICBs). London: NHS England, 2022.
4. Dujardin J, Schuurmans J, Westerduin D, et al. The COVID-19 pandemic: A tipping point for advance care planning? Experiences of general practitioners. Palliative Medicine 2021;35(7):1238-48. doi: 10.1177/02692163211016979
5. Morrison RS, Meier DE, Arnold RM. What’s Wrong With Advance Care Planning? JAMA 2021;326(16):1575-76. doi: 10.1001/jama.2021.16430
6. Leniz J, Weil A, Higginson IJ, et al. Electronic palliative care coordination systems (EPaCCS): a systematic review. BMJ Supportive & Palliative Care 2020;10(1):68. doi: 10.1136/bmjspcare-2018-001689
7. Birtwistle J, Millares-Martin P, Evans CJ, et al. Mapping and characterising electronic palliative care coordination systems and their intended impact: A national survey of end-of-life care commissioners. PLOS ONE 2022;17(10):e0275991. doi: 10.1371/journal.pone.0275991
8. Alied M, Law-Clucas S, Allsop MJ, et al. Evaluation of Electronic Palliative Care Coordination Systems to support advance care planning for people living with life-threatening conditions (PREPARE): protocol for a multicentre observational study using routinely collected primary and secondary care data in England. BMJ Open 2025;15(3):e093175. doi: 10.1136/bmjopen-2024-093175
9. Kishino M, Ellis-Smith C, Afolabi O, et al. Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review. Palliative Medicine 2022;36(3):462-77. doi: 10.1177/02692163211068282
10. Bradshaw A, Allsop MJ, Birtwistle J, et al. Exploring the contextual assumptions, interventions and outcomes of digital advance care planning systems: A theory of change approach to understand implementation and evaluation. Palliative Medicine 2024;38(10):1144-55. doi: 10.1177/02692163241280134
Competing interests: No competing interests
Dear Editor
Higginson & Ramjeeawon’s commentary rightly raises concerns around the likely outcomes of current debates and challenges of palliative and end of life care provision in the UK. A key, but rarely acknowledge or supported, element of that provision are unpaid/family carers who provide the majority of support to those with palliative and end of life care needs at home. These carers often do this with negative effects on their own health and wellbeing that also threaten their ability to continue caring, potentially increasing health service use for both the person they support and for themselves. There are multiple reasons for these negative effects on carers, including limits on their ability to gain or access support for both their caring role and for their own health and wellbeing.
We need to radically reframe our thinking around unpaid/family carers. We need to think of unpaid/family carers as marginalised patients. We also need to think of unpaid/family carers as part of the workforce. Better identification of, engagement with, and support for unpaid/family carers is needed in relation to both of these reframes. There are evidence-based interventions that could enable this if systematically adopted by those local health strategies that lack concrete plans [1] e.g., the internationally recognised Carer Support Needs Assessment Tool Intervention (CSNAT-I [2-8]). There is also robust evidence that bespoke carer support roles [9] (e.g., the Carer Support Nurse [10]) and systemic change, including making carers more financially secure, are also required [9].
We need to urge these current debates to think of patients and carers as the unit of care (think dyadically) and to think big and consider the potential impacts of improving palliative and end of life care provision beyond palliative and end of life care itself e.g., improving the identification and support of unpaid/family carers could have ripple effects on wider health service use for both patients and carers.
References
1) Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FEM, Sleeman KE. Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved] [version 2; peer review: 2 approved] [published Online First: 2023/03/30]. AMRC Open Res 2023;4:19. doi:10.12688/amrcopenres.13079.2. pmid:36987529
2) https://csnat.org/ [accessed 31/03/2025)
3) Ewing G, Austin L, Diffin J, Grande G (2015). Developing a person-centred approach to carer assessment and support. British Journal of Community Nursing; 20(12): 580-584.
4) Grande G, Austin L, Ewing G, O’Leary N, Roberts C (2017). Assessing the impact of a Carer Support Needs Assessment (CSNAT) intervention in palliative home care: a stepped wedge cluster trial. BMJ Supportive & Palliative Care; 7: 326-334.
doi:10.1136/bmjspcare-2014-000829 (Online first 2015).
5) Lund L, Ross L, Petersen MA, Blach A, Rosted E, Bollig G, Juhl GI, Farholt HB, Winther H, Laursen L, Hasse M, Weensgaard S, Guldin M-B, Ewing G, Grande G, Groenvold M (2024). Effect of the Carer Support Needs Assessment Tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial. BMJ Supportive & Palliative Care 2024;14:e772-e783. doi:10.1136/bmjspcare-2020-002467
6) Toye C. Parsons R, Slatyer S, Aoun SM, Mooring R, Osseiran-Moisson R, Kill KD (2016). Outcomes for family carers of a nurse-delivered hospital discharge intervention for older people (the Further Enabling Care at Home Program): Single blind randomised controlled trial. Int J Nurs Stud; 64: 32-61. http://dx.doi.org/10.1016/j.ijnurstu.2016.09.012
7) Aoun SM, Grande G, Howting D, Deas K, Toye C, Troeung L, et al. (2015) The Impact of the Carer Support Needs Assessment Tool (CSNAT) in Community Palliative Care Using a Stepped Wedge Cluster Trial. PLoS ONE 10(4): e0123012. doi:10.1371/journal.pone.0123012 (rated RRE grade 3)
8) Aoun S, Deas K, Toye C, Ewing E, Grande G, Stajduhar K (2015). Supporting family caregivers to identify their own needs in end-of-life care: qualitative findings from a stepped wedge cluster trial. Palliative Medicine; 29(6): 508-517.
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9) Grande G, Rowland C, Shield T, Bayliss K, Flynn J, Harris D, Wearden A, Farquhar M, Panagioti M, Hodkinson A, Booth M, Cotterill D, Goodburn L, Knipe C, Bee P. Understanding and addressing factors affecting carers’ mental health during end-of-life caregiving: synopsis of meta synthesis of literature and stakeholder collaboration. Health Soc Care Deliv Res 2025; Feb 19:1-27. https://doi.org/10.3310/RTHW8493
10) https://arc-eoe.nihr.ac.uk/research-implementation/research-themes/palli... (accessed 31/03/2025)
Competing interests: No competing interests
Dear Editor:
An important opportunity exists to create meaningful change in providing competent, coordinated, compassionate, cost effective, and persons centred care at the close of life in UK. In doing this work, I urge the Expert Panel of the parliamentary Health and Social Care committee to focus on the episode of care and not just the care of actively dying persons. In reflection of some 35 year of studying the Hospice Benefit in the US, the evidence is clear that a focus on on silos of care and forcing a difficult choice resulted in : 1) short hospice length of stays with one-half entering hospice for 18 days or less; 2) majority of dying person entering hospice after hospital or nursing home stay(1); and 3) more unmet needs for pain among those getting hospice services after hospital stay (2).
Joan M Teno, MD, MS
Adjunct Professor of Health Systems, Policy, and Practice
Brown University School of Public Health.
Reference
1. Teno JM, Ankuda CK, Keohane L, et al. Pathway to Hospice: How Has Place of Care before Hospice Changed with the Growth of Hospice in the United States? J Palliat Med. Nov 2022;25(11):1661-1667.
2. Zhu E, McCreedy E, Teno JM. Bereaved Respondent Perceptions of Quality of Care by Inpatient Palliative Care Utilization in the Last Month of Life. J Gen Intern Med 2024 May;39(6):893-901.
Competing interests: No competing interests
Dear Editor
Irene Higginson highlights the importance of timely, multiprofessional, skilled palliative care to improve patient outcomes for patients and their carers. She touches on the need to ensure that the workforce is appropriately trained to meet the needs of an increasingly complex patient population.
Poor workforce planning hinders access to and delivery of equitable palliative care services. Medical workforce data from 2024 demonstrates that few doctors in the early years of their careers have access to posts within palliative care services: across the UK, there are only 135 Foundation posts ,47 internal medicine posts and 261 GP posts (registrar and integrated training posts.) Relatively few doctors annually are therefore able to develop capability in delivery of holistic palliative care. Workforce surveys going back over 10 years also show that we are consistently not training enough specialty registrars to meet consultant demand, leading to unfilled posts, often in areas of greatest need. Data from the 2022 Royal College Physicians census also shows that consultant posts are not equitably distributed cross the UK, exacerbating inequalities (1). Currently there are significant bottle necks for early career doctors to access core and specialty training posts, despite rising population need and organisations reporting significant workforce gaps. There is a paucity of information available regarding the large nursing, social work and allied healthcare professional workforce in palliative care.
As outlined by Higginson, palliative care outcomes are best when timely and delivered by skilled multiprofessional teams. Any proposals from the commission and expert panel need to recognise the importance of a costed workforce plan, with enhanced access to training opportunities for all health and social care professionals.
Reference
1 https://www.rcpe.ac.uk/news/2022-consultant-census-report-published#:~:t....
Competing interests: Past chair of Palliative Medicine Specialty Advisory Committee
Dear Editor
The thoughtful opinion piece by Higginson et al rightly underscores the urgent need to address inequality in access to hospice and end-of-life care. Central to this effort must be a deliberate focus on those living at the margins—people who are often most excluded from current systems of care, including individuals experiencing homelessness, ethnically diverse groups (those who are not White British), people with disabilities, and those living in socioeconomic deprivation.
Persistent structural inequities mean that these populations face significant barriers—ranging from cultural and institutional to logistical and financial—that limit their access to compassionate, timely, and appropriate end-of-life care. These are not peripheral issues; they are central challenges that reflect the broader failures of our healthcare systems to provide universal, dignified care at life’s end.
Critically, any work done to improve hospice and palliative services that does not focus on those at the margins risks deepening inequality.1 Without intentional focus, efforts to improve services may disproportionately benefit those who already have the best access and outcomes—leaving behind those who are already getting the least and the worst.
Crucially, by prioritising the needs of those at the margins, we can develop innovative, inclusive, and scalable solutions that ultimately improve care for everyone. The most effective, sustainable models of hospice and palliative care will be those built with the most vulnerable in mind—not as an afterthought, but as the starting point. When care systems are designed to work for people with the greatest needs, they inherently become more flexible, responsive, and equitable for all.
Any work to reform hospice and palliative care must therefore place the lived realities of marginalised communities at the forefront.
1. Bajwah S et al. Equal but inequitable: response of specialist palliative care and hospice services to people from ethnic minority groups with COVID-19-an observational study (CovPall). BMJ Supportive & Palliative Care 2021
Competing interests: Sabrina Bajwah is part of the Health and Social Care Committee Independent Expert Panel currently undertaking an evaluation into the state of palliative care in England
Re: In a healthcare system under increasing pressure, can a palliative care commission drive meaningful change?
Dear Editor,
This commentary by Higginson is relevant to health systems in low-, middle- and high-income countries. Comprehensive palliative care that is available in a timely way for people with a life-limiting illness (but not limited only to the terminal stages of that illness) does improve the quality of care while reducing the resources used. Indeed, the opportunity of low- and middle-income countries is to learn from the poor decisions made in high-income countries when providing care in the last year of life and not replicate the mistakes that have been made.
Timely recognition that a person is at high risk of an 'expected death' in the coming months or years should be a flag for clinicians to plan the care with that person and their family and friends. We have robust ways of identifying many such people, but do little with that knowledge.
The benefits of palliative care outlined in the commentary to date have not included the wellbeing and health of carers in the years after the person's death, but evidence suggests that palliative care is associated with improvements that need to be quantified in detail.
At its most fundamental level, there is untold suffering that needs to be relieved with a systematic and well-funded approach as evidence of a humane society that values every person, even when they do not have a voice.
Competing interests: No competing interests