House of Commons - Health

Select Committee on Health Fourth Report

1 Introduction

1. As one of our witnesses observed, "we all die … 100% mortality is an immutable fact and it is not actually a sign of failure".[1] However, death remains the last taboo. Every year about 520,000 people die in England, around a quarter of whom access some form of palliative care. Many patients experience "severe symptoms" and "psychosocial problems" in their last months of life.[2]

2. Palliative care has much to offer in terms of addressing these problems, with its goal of achieving the best quality of life for the patient with advanced progressive illness, and for their families, friends and carers. Sir Nigel Crisp, Chief Executive of the NHS, has described better care of the dying as "a touchstone for success in modernising the NHS" and "one of the really big issues" which must be addressed.[3]

3. We announced our inquiry into palliative care on 23 January 2004 with the following terms of reference:

The Committee will inquire into the provision of hospice and palliative care by the NHS and by independent services, including the related support services of local authorities and other agencies for both adults and children. The inquiry will examine the extent to which the needs and wishes of patients of different ages are taken into account, including their care choices, ethnicity, cultural and spiritual beliefs. It will address the financing, governance, staffing, location and quality of palliative care.

In particular the Committee will examine:

Issues of choice in the provision, location and timeliness of palliative care services, including support to people in their own homes.
Equity in the distribution of provision, both geographical and between different age groups.
Communication between clinicians and patients; the balance between people's wishes and those of carers, families and friends; the extent to which service provision meets the needs of different cultures and beliefs.
Support services, including domiciliary support and personal care.
Quality of services and quality assurance.
The extent to which services meet the needs of different age groups and different service users.
Governance of charitable providers, standards of organisation, links to the NHS and specialist services.
Workforce issues, including the supply and retention of staff and the quality and adequacy of training programmes.
Financing, including the adequacy of NHS and charitable funding and their respective contributions and boundaries.
The impact and effectiveness of Government policy including the National Service Frameworks, the Cancer Plan and NICE recommendations.

4. We took oral evidence on four occasions between 15 March and 26 May 2004, hearing from a range of charities, service providers, health professionals, patient groups, and Melanie Johnson MP, Parliamentary Under-Secretary of State, Dr Stephen Ladyman MP, Parliamentary Under-Secretary of State, and officials, Department of Health. We also received around 70 memoranda which informed our inquiry. We are most grateful to all those who submitted oral and written evidence.

5. We are also extremely grateful to our three specialist advisers: Melanie Henwood, an independent health and social care analyst; Dr Anne Naysmith, Consultant in Palliative Medicine, Kensington and Chelsea Primary Care Trust; and Chris Vellenoweth, an independent health policy adviser, for their most helpful advice and support during this inquiry.

6. We visited a specialist palliative care unit/hospice attached to a hospital in Malmö, Sweden, in the course of a visit relating to three separate inquiries we undertook in February 2004. We noted the model used there of having a hospice annexed to the hospital, and were impressed by the extent of freedom of movement between home and hospice we witnessed, with patients having a large degree of autonomy and choice. In May 2004 we visited Milestone House, Edinburgh, which offers respite care for those with HIV/AIDS, and the Marie Curie Care Hospice in Edinburgh. We met staff, patients and representatives of charities. We were extremely impressed by the quality of services we witnessed in both establishments. We also noted that staff pressures were less in the Lothian area than they were in England and that this yielded great benefits in terms of the quality of patient care. We saw that there were six palliative care consultants in the Lothian area alone, a far more favourable ratio than currently exists in England. We are extremely grateful to those who gave up their time to accommodate these visits and made them such helpful and informative occasions.

7. Palliative care is an area of the health service which places particular stress on health professionals and other carers. We have been greatly struck by the dedication, professionalism and personal commitment of many of those we have encountered working in this field, and wish to pay tribute to their efforts in this Report.

Defining palliative care

8. The most widely used definitions of palliative care are those adopted by the World Health Organisation:

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient's illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.[

9. Within palliative care it is important to distinguish between general and specialist care. General palliative care is provided by the usual professional carers of the patient and family, such as GPs, district nurses, hospital doctors, ward nurses, allied health professionals and staff in care homes.[5]Most palliative care is provided by non-specialist staff such as these.

10. Specialist palliative care is provided by multi-disciplinary teams that might include consultants in palliative medicine, nurse specialists, specialist social workers and experts in psychological care. Such staff are specifically trained to advise on symptom control and pain relief and "to give emotional, psychosocial and spiritual support to patients, their families, friends and carers, both during the patient's illness and into bereavement".[6]

11. In addition, supportive care constitutes an important part of patient care. This is defined by the National Council for Hospice and Specialist Palliative Care Services as:

12. In its recent guidance on Supportive and Palliative Care,[8]the National Institute for Clinical Excellence (NICE) suggests that supportive care is not a distinct speciality but the responsibility of all health and social care professionals delivering care. It ranges from self-help to user involvement, spiritual and social support.

The provision of palliative care

13. Palliative care is provided in England by NHS services, independent hospices and other voluntary services. There are currently:

130 voluntary hospices for adults providing 2,147 beds, offering a range of services which might include day care units, community support (sometimes extending to full hospice at home services[9]), support therapies (which may extend to support for carers and relatives) and bereavement counselling.[10]
27 children's inpatient units providing 201 beds.
42 NHS palliative care units providing 490 beds supported by a range of community services.
264 home care services offering community support evenly divided between the NHS and voluntary sector.[11]