Top picks: 12 resources about hospice and palliative care

Summary

World Hospice and Palliative Care Day takes place on 12 October 2024. 

Patient safety in hospice and palliative care involves ensuring that every patient is able to access the services, support and pain relief that they need when they reach the end of life. It is also vital that families and carers are given relevant and timely support and information by healthcare services during their loved one’s hospice or palliative care, and following their death.

Content

Patient Safety Learning has pulled together 12 useful resources shared on the hub about hospice and palliative care. They include reports into the current state of hospice and palliative care in the UK, families’ reflections on how end of life care can be improved and resources related to palliative care for people with learning disabilities.

1. A manifesto for palliative and end of life care

The charities Sue Ryder, Marie Curie, Together for Short Lives, National Bereavement Alliance and Hospice UK have produced this joint manifesto that calls on all political parties and candidates to commit to policies that ensure everyone affected by dying, death and bereavement receives the best possible care and support, both now and in the future.

2. The Worldwide Hospice and Palliative Care Alliance

The Worldwide Hospice and Palliative Care Alliance (WHPCA) is an international non-governmental organisation focusing exclusively on hospice and palliative care development worldwide. The WHPCA website hosts a wide variety of resources relating to hospice and palliative care including advocacy resources, standards and clinical guidelines and country reports.

3. Dying well at home: commissioning quality end-of-life care (King's Fund)

This King’s Fund report explores what we know about commissioning end-of-life care, the inequalities experienced by particular groups, and how NHS and social care commissioners in England are measuring and assuring the quality of care people receive. 

4. Seeking Excellence in End of Life Care UK (SEECare UK): a UK multi-centred service evaluation

The Association of Palliative Medicine coordinated the first ever prospective evaluation of end of life care against set standards in 88 hospitals across the UK. It found that people dying in UK hospitals without specialist palliative care input frequently have “significant and poorly identified unmet needs” —93% of people assessed having demonstrable unmet need.

5. Interview with Dr Elena Mucci, Consultant Geriatrician at East Sussex Healthcare NHS Trust

In this video interview, consultant geriatrician Dr Elena Mucci talks about patient safety in geriatrics and end of life care. She describes the importance of taking a whole-person approach to caring for older people, reviewing medications regularly, equipping patients to manage their own health, and engaging patients and their families in planning for end of life care at an early stage.

6. Palliative Care for People with Learning Disabilities Network (PCPLD Network)

The Palliative Care for People with Learning Disabilities (PCPLD Network) is a charity created to ensure that patients with learning disabilities receive the coordinated support they need throughout their life. The PCPLD Network website has some interesting webinars on a range of different topics which have already taken place for you to watch as well as useful resources.

7. Sarcoma UK: Family insights from Dermot’s experience

This article from Sarcoma UK was written by the family of Dermot, who was diagnosed aged 77 with myxofibrosarcoma in March 2020. They reflect on the issues Dermot faced in accessing effective palliative care and make recommendations linked to the recent publication of the Healthcare Safety Investigation (HSIB) report, Variations in the delivery of palliative care services to adults.

8. Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers

For patients living at home with advanced illness, deterioration in health can happen at any time of the day or night. This research report funded by the charity Marie Curie looks at issues faced by people with advanced illness and their informal carers in accessing out-of-hours care.

9. "We were completely unprepared for the challenges and disruption that lay ahead" — A family share their experience of taking a loved one home for end of life care

In this anonymous blog, a hub member shares how unprepared she and her family were for the challenges and disruption that lay ahead when her husband was discharged from hospital for end of life care at home.

10. "What matters to you today?" How this simple question can improve patient care

Physiotherapist Ann Bryan and occupational therapist Ines Brito are part of the therapy team working at the Marie Curie hospice in Hampstead. In this blog, they look at how asking a simple yet powerful question: "what matters to you?" can give healthcare professionals vital insights into the lives of patients that aren't always captured in routine assessments.

11. Lessons not learned: A family's lengthy efforts to turn complaints into improvements

In this blog, a family describe the lengthy efforts they had to take to try to ensure their complaints about their loved one's end of life care would result in improvements at the hospital.

12. Final guidance on visiting and accompanying in care homes, hospitals and hospices - Care Quality Commission (CQC)

Following consultation, the Care Quality Commission have now published final guidance to help providers understand and meet the new fundamental standard on visiting and accompanying in care homes, hospitals, and hospices. The guidance (on Regulation 9A: visiting in care homes, hospitals, and hospices) also sets out what people using health and social care services and their families, friends or advocates can expect.

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