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Answering questions on palliative care

Palliative care improves the quality of life of patients and their families facing the problems associated with life-threatening illness. It aims to prevent and relieve suffering by way of early identification, assessment and treatment of pain and other physical, psycho-social and spiritual problems1.

Most palliative care is provided by the primary care team, although it is a relatively small part of a GP's workload. An average GP's list of 1,800 patients will include 20 per year who are dying (five from cancer and 15 from non-malignant disease), of whom eight will die under his or her care2.

The palliative care approach should also be used for diseases other than cancer, such as heart failure and motor neurone disease.

What publications are important in palliative care?

1 The Calman-Hine report (Department of Health, 1995)3

This stressed the importance of primary care in both cancer management and palliative care.

2 NHS Cancer Plan (Department of Health, 2001)4

Set targets for improvement in cancer management and palliative care.

3 The national service framework for older people (Department of Health, 2001)5

Stressed the importance of palliative care in the elderly.

4 The national service framework for coronary heart disease (Department of Health, 2000)6

Recognised the need for palliative care in patients with cardiac failure.

5 Changing gear: guidelines for managing the last days of life (National Council for Hospice and Palliative Care Services, 1997)7

Special needs for the last few days of life.

6 Palliative Care 2000: Commissioning Through Partnership (National Council for Hospice and Palliative Care Services, 1999)8

Description of the palliative care approach.

7 Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making (General Medical Council, 2002)9

Sets out the standards of practice expected of doctors when they consider whether to withhold or withdraw life-prolonging treatments. This often comes up in the oral exam.

8 Improving supportive and palliative care for adults with cancer (National Institute of Clinical Excellence, due February 2004) will be available at www.nice.org.uk

What do patients and carers want?

 · Information in a form and amount that suits them.

 · Access to appropriate professionals in and out of hours.

 · Symptoms to be controlled.

 · To be involved in decisions about where and how their care is provided.

 · To be treated as individuals, not as a medical condition.

What are the communication issues?

 · Carer or patient to professional

 · Patient to rest of family, especially children

 · Professional to professional

 · Within the primary care team

 · Primary and secondary care

 · Breaking bad news and collusion

 · Use of patient-held records

What services are available and what are the associated issues?

 · Teamwork is essential.

 · Someone needs to be in charge ­ usually the district nurse or GP.

 · Robust arrangements must be made for when the person in charge is not available.

 · Many professionals will be involved including the district nurse, GP, specialist palliative care nurse, Marie Curie nurses.

 · Out-of-hours: 24-hour district nurse, out-of-hours specialist nurses, GP on call, co-ops and deputising service.

 · Hospital colleagues, specialist site-specific nurses, for example lung cancer nurse.

 · Hospice: inpatient, outpatient, day care, respite care, domiciliary visits.

 · Oncologist: chemotherapy and radiotherapy.

 · Occupational therapy, physiotherapy, complementary therapy.

 · Volunteer services.

 · Social services.

 · Disability living allowance: special rules (DS 1500).

 · Cancer charities: Macmillan grants.

What are the principles of dealing with the common symptoms?

 · Symptoms can be due to the underlying disease, the treatment or a reason not related to the underlying disease.

 · Is the most likely cause reversible?

 · Thorough initial assessment is very important, including history and examination.

 · Aim to reduce the symptom if total eradication is not possible. Explain the reason why the symptom is occurring to reduce anxiety.

 · Information in the BNF is easily accessible, or consult a symptom control reference book10,11. See also www.palliativedrugs.com

 · Review frequently until the best possible outcome is achieved.

 · Ask for specialist help early if in difficulty, for example from the palliative care specialist nurse or consultant.

 · Pain, nausea, vomiting, constipation, anorexia and lethargy are common symptoms.

 · Symptoms may have several causes, each requiring a different approach.

 · All symptoms, especially pain, may have a psychological, social and spiritual dimension.

 · Morphine is still the gold standard for managing pain.

 · WHO analgesic ladder is practical and useful.

 · Morphine given to relieve pain does not usually cause tolerance

What are the psychological factors?

Discuss this with the patient because they may be reluctant to reveal what they are feeling.

Psychological factors are: fear, hope, anxiety, depression, guilt, anger, grief, loss of control and meaning, denial and other defence mechanisms.

Palliative care emergencies

This is important ­ it is possible to improve quality of life even towards the end.

 · Superior vena cava obstruction

 · Spinal cord compression

 · Hypercalcaemia

 · Severe agitation

 · Massive haemorrhage

What are the difficult questions?

Need to explore the reasons why the question is being asked. Sharing a question may be more important than answering it.

 · How long have I got?

 · What happens after death?

 · Will you avoid telling him, he won't be able to cope?

 · Could you help me to die?

 · How many of these do I have to take to end my life?

Is it possible to audit quality of care?

Yes, the Northumberland Primary Care Standards in Palliative Care, 13 Gold Standards Project14, the Liverpool Integrated Care Pathway for the Dying15 and the expected Guidelines from NICE (due in February 2004) are tools for auditing quality of care.

What are the ethical and legal issues?

 · Present in all decisions (Good Medical Practice: Duties of a Doctor, GMC).

 · Four factors:

- respect for autonomy of the patient, family and professionals. Leads to informed consent and confidentiality

- beneficence (do good)

- non-maleficence (do no harm)

- justice (eg just use of resources)

 · Include the views of those involved ­ such as carers and other professionals. You may need to ask those with ethical expertise.

 · Record information carefully.

 · Consider how you would explain your decision to a third party.

 · Advance directives should be considered carefully ­ whether they are legally binding depends on the circumstances12.

 · Euthanasia is illegal in Britain.

 · Double effect is enshrined in law.

 · Withholding/withdrawing life-prolonging treatment is an issue.

 · Seek help from experts eg palliative care consultant, medical defence organisation, GMC.

References

1 World Health Organisation. Palliative care. www.who.int/hiv/topics/palliative/PalliativeCare/en [Accessed 31/7/03]

2 Barclay S. Palliative Care for Non Cancer Patients: A UK perspective from Primary Care. In: Addington-Hall JM, Higginson IJ (Eds). Palliative Care for Non Cancer Patient. Oxford: Oxford University Press, 2001:172-88

3 A policy framework for commissioning cancer services. A report by the expert advisory group on cancer to the chief medical officers of England and Wales. London: Department of Health, 1995.

Also available at www.doh.gov.uk/cancer/calmanhine.htm

[Accessed 31/7/03]

4 The NHS Cancer Plan. London: Department of Health, September 2000. Also available at www.doh.gov.uk/cancer/cancerplan.htm

[Accessed 31/7/03]

5.National service framework for older people. London: Department of Health, 2001.

Also available at www.doh.gov.uk/nsf/olderpeople/index.htm [Accessed 31/7/03]

6 National service framework for coronary heart disease. London: Department of Health, 2001. Also available at www.doh.gov.uk/nsf/coronary.htm [Accessed 31/7/03]

7 Changing gear: guidelines for managing the last days of life. London: National Council for Hospice and Palliative Care Services , 1997

(www.hospice-spc-council.org.uk)

8 Tebbit P. Palliative Care 2000: Commissioning Through Partnership. London: National Council for Hospice and Palliative Care Services , 1999 (www.hospice-spc-council.org.uk)

9 Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making. London: General Medical Council, 2002.

Also available at

www.gmc uk.org/global_sections/sitemap_frameset.htm [Accessed 31/7/03]

10 Regnard CFB, Tempest S. A Guide to Symptom Relief in Advanced Disease. Oxford: Radcliffe Medical Press, 1998

11 Kaye P. A-Z Pocket Book of Symptom Control. ELP Publications, 1994

12 The MDU's guide to consent to treatment. London: MDU, 2001. Also available at

www.the-mdu.com/gp/index.asp

13 www.generalpractice.co.ukstandards.htm

(Dr D. Leith)

14 Thomas K. Caring for the dying at home: companions on the journey. Oxford: Radcliffe Medical Press, 2003.

15 Ellershaw JE et al. Care of the dying: setting standards for symptom control in the last 48 hours of life. J Pain Symptom Manage 2001;21:12

Further reading

1 BMJ themed issue: What is a good death? 2003;327:173-238

2 ABC of palliative care - a series of key articles that appeared in the BMJ between September 1997 and February 1998

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