BMJ  2004;329:1056-1057 (6 November), doi:10.1136/bmj.329.7474.1056

Editorial

Developing primary palliative care

People with terminal conditions should be able to die at home with dignity

Although 65% of people with cancer want to die at home, only about 30% are successful in doing so.^{1 2} A government committed to choice for patients must improve this figure.³ Developing palliative care services in primary care is essential for realising the expectations of dying people. Such services could also offer important opportunities for extending supportive humane care at an earlier stage, and to people not only with cancer but with chronic obstructive pulmonary disease, motor neurone disease, and cardiac failure, for example, who also often have palliative care needs.

Primary care professionals have the potential and ability to provide end of life care for most patients, given adequate training, resources, and, when needed, specialist advice.^{4 5} They share common values with palliative care specialists—holistic, patient centred care, delivered in the context of families and friends.⁶ However, until recently, apart from Macmillan general practitioners and nurse facilitators, few comprehensive workforce initiatives have been undertaken in primary care that focus on end of life care.

Many cancer patients and their carers experience existential distress long before they die.⁷ Recognising and alleviating such suffering is important, but it often goes unrecognised or is overlooked by services focusing on the terminal phase of illnesses. Primary care teams may know patients over long periods of time. They can readily identify patients from cancer and chronic disease registers who might benefit from an early palliative care approach. Such patients could be identified by clinicians asking one simple question of themselves: "Would I be surprised if my patient were to die in the next 12 months?"⁸ By identifying such patients proactively we could deliver, simultaneously, active treatment and patient centred supportive care, through a team with whom many patients have a valued long term relationship.

Palliative care services need to be extended to patients with non-malignant conditions who have comparable concerns to and in some cases even greater unmet needs than cancer patients.⁹ Progress by palliative medicine specialists is hampered by issues such as uncertainty about the most effective models of care, lack of non-cancer expertise, and concerns about pressure on specialist services. General practitioners and community nurses can lead the way in providing a palliative care approach for patients with terminal organ failure illness. The first step in such an approach is for the goals of care to be discussed and agreed. Management plans are adjusted accordingly. Effective control of symptoms and maintaining quality of life are prioritised.

In the light of these important opportunities it is regrettable that the new general medical services contract has not prioritised palliative care. By day, other developments to achieve the quality indicators are taking precedence. By night and at weekends, the new unscheduled care services (which are responsible for providing care for 75% of the hours in the week) are even less well configured than previous out of hours provision to facilitate dying at home. Such services specialise in dealing with acute emergencies and, as such, often struggle to meet the medical, nursing, and social care needs of dying people and their families. These changes will greatly affect care for dying people and may increase the number of hospital admissions.

However, one important initiative is gaining momentum within primary care. The Gold Standards Framework is a resource for organising proactive palliative care in the community and is supported by funding from the Cancer Services Collaborative, Macmillan Cancer Relief, and the National Lottery.¹⁰ The framework provides a detailed guide to providing holistic, patient centred care and thereby facilitates effective care in the community. Other recently initiated mechanisms for developing primary palliative care include the training of general practitioners with a special interest in palliative care and the new end of life initiative in England to improve palliative care provision by generalists and to share examples of good practice.

To support such developments it is essential that primary palliative care is supported by an adequate academic base.¹¹ This is admittedly a challenging arena in which to undertake research, but progress has been made in recent years in developing conceptual models and research architectures for studying end of life issues. Now we need to build on this work to ensure that the understanding and insights gleaned can be translated into effective interventions.

Every person with a progressive illness has a right to palliative care.¹² Patients desire a reassuring professional presence in the face of death. General practitioners and community nurses are trusted by patients and are in a position to provide effective, equitable, and accessible palliative care. This will happen only if they have adequate time and resources and work in a system that encourages such care. Patients who receive holistic support in the community may be less likely to require expensive admission to hospital and often futile treatments at the end of their lives.

Primary Palliative Care Research Group, Division of Community Health Sciences: General Practice Section, University of Edinburgh EH8 9DX, (Scott.Murray{at}ed.ac.uk)

Primary Palliative Care Research Group, Division of Community Health Sciences: General Practice Section, University of Edinburgh EH8 9DX

Cancer Services Collaborative, Birmingham, B24 0DE

Department of Palliative Care and Policy, King's College, London SE5 9RJ

---

Competing interests: None declared.

References

1. Higginson I, Sen-Gupta GJA. Place of care in advanced cancer. J Palliat Med 2004;3: 287-300.
2. World Health Organization. Palliative care: the solid facts. Copenhagen: WHO, 2004.
3. Department of Health. Building on the best: choice, responsiveness and equity in the NHS. London: DoH, 2003.
4. Harding R,.Higginson I. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 2003;17: 63-74.[Abstract/Free Full Text]
5. Charlton R. Primary palliative care. Oxford: Radcliffe Medical Press, 2002.
6. Buckley G. General practice and palliative care. Eur J Gen Pract 1995;1: 51-2.
7. Murray SA, Kendall M, Boyd K, Worth A, Benton TF. Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliat Med 2004;18: 39-45.[Abstract/Free Full Text]
8. Lynn J. Serving patients who may die soon and their families: the role of hospice and other services. JAMA 2001;285:7: 925-32.[Abstract/Free Full Text]
9. Murray SA, Boyd K, Kendall M, Worth A, Benton TF. Dying of lung cancer or cardiac failure; prospective qualitative interview study of patients and their carers in the community. BMJ 2002;325: 929-32.[Abstract/Free Full Text]
10. Thomas K. Caring for the dying at home. Companions on a journey. Oxford: Radcliffe Medical Press, 2003.
11. National Institute for Clinical Excellence. Improving supportive and palliative care for adults with cancer. London: NICE, 2004.
12. World Health Organization. Better palliative care for older people. Copenhagen: WHO, 2004.

CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this?

Relevant Articles

Palliative care in the community

Daniel Munday and Jeremy Dale
BMJ 2007 334: 809-810. [Extract] [Full Text] [PDF]

Where patients with cancer die in Cuba

Alfredo A Espinosa-Roca, Alfredo D Espinosa-Brito, Eduardo Fernández-Casteleiro, and Teresita Sabatés-Llerandi
BMJ 2006 332: 668. [Extract] [Full Text]

Factors influencing death at home in terminally ill patients with cancer: systematic review

Barbara Gomes and Irene J Higginson
BMJ 2006 332: 515-521. [Abstract] [Full Text] [PDF]

Developing primary palliative care: Completion of community palliative care management form should be mandatory

Julia Riley
BMJ 2005 330: 42. [Extract] [Full Text] [PDF]

Developing primary palliative care: Changed role of general practitioners has been taken into account

Colin I Guthrie
BMJ 2005 330: 42. [Extract] [Full Text]

Developing primary palliative care: Community palliative care services are not sufficiently funded

Pam Levack, Helen Dryden, and Fiona Paterson
BMJ 2005 330: 42-43. [Extract] [Full Text]

This article has been cited by other articles:

• Shipman, C., Gysels, M., White, P., Worth, A., Murray, S. A, Barclay, S., Forrest, S., Shepherd, J., Dale, J., Dewar, S., Peters, M., White, S., Richardson, A., Lorenz, K., Koffman, J., Higginson, I. J (2008). Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups. BMJ 337: a1720-a1720 [Abstract] [Full text]  
• Charlton, R., Currie, A. (2008). A UK Perspective on Worldwide Inadequacies in Palliative Care Training: A Short Postgraduate Course Is Proposed. AM J HOSP PALLIAT CARE 25: 63-71 [Abstract]  
• Munday, D., Mahmood, K., Dale, J., King, N. (2007). Facilitating good process in primary palliative care: does the Gold Standards Framework enable quality performance?. Fam Pract 24: 486-494 [Abstract] [Full text]  
• Munday, D., Dale, J. (2007). Palliative care in the community. BMJ 334: 809-810 [Full text]  
• Espinosa-Roca, A. A, Espinosa-Brito, A. D, Fernandez-Casteleiro, E., Sabates-Llerandi, T. (2006). Where patients with cancer die in Cuba.. BMJ 332: 668-668 [Full text]  
• Gomes, B., Higginson, I. J (2006). Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 332: 515-521 [Abstract] [Full text]  
• Barnes, S., Gott, M., Payne, S., Parker, C., Seamark, D., Gariballa, S., Small, N. (2005). Recruiting older people into a large, community-based study of heart failure. Chronic Illness 1: 321-329 [Abstract]  
• Ahmad, S., O'Mahony, M.S. (2005). Where older people die: a retrospective population-based study. QJM 98: 865-870 [Abstract] [Full text]  
• Faithfull, S., Cook, K., Lucas, C. (2005). Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided. Palliat Med 19: 545-550 [Abstract]  
• Murray, S. A, Boyd, K., Sheikh, A. (2005). Palliative care in chronic illness. BMJ 330: 611-612 [Full text]  
• (2005). Hit parade. BMJ 330: 485-485 [Full text]  
• Holden, J. (2005). Palliative care in community hospitals. JRSM 98: 45-46 [Full text]  
• Riley, J. (2005). Developing primary palliative care: Completion of community palliative care management form should be mandatory. BMJ 330: 42-42 [Full text]  
• Guthrie, C. I (2005). Developing primary palliative care: Changed role of general practitioners has been taken into account. BMJ 330: 42-42 [Full text]  
• Levack, P., Dryden, H., Paterson, F. (2005). Developing primary palliative care: Community palliative care services are not sufficiently funded. BMJ 330: 42-43 [Full text]  

Rapid Responses:

Read all Rapid Responses

Dignity

jenny iliopoulou
bmj.com, 4 Nov 2004 [Full text]

Palliative Care in the Community

Suresh Kumar
bmj.com, 5 Nov 2004 [Full text]

homoeopathy for palliative care..

dinesh r.s
bmj.com, 8 Nov 2004 [Full text]

Palliative Care

Colin I Guthrie
bmj.com, 8 Nov 2004 [Full text]

Primary Palliative Care in Developing Countries

Mala Ramanathan
bmj.com, 9 Nov 2004 [Full text]

Not for ressuscitation but For Palliative Care

Julia Riley
bmj.com, 9 Nov 2004 [Full text]

Future pain for palliative care?

Giovanni Gambassi, et al.
bmj.com, 10 Nov 2004 [Full text]

Strangers in the night

David I Jeffrey
bmj.com, 10 Nov 2004 [Full text]

Re: Not for ressuscitation but For Palliative Care

Dr John Rumbold
bmj.com, 10 Nov 2004 [Full text]

Palliative Care: getting home from hospital

Pamela A Levack, et al.
bmj.com, 10 Nov 2004 [Full text]

Palliative primary care: service and academic challenges

Robert K McKinley, et al.
bmj.com, 20 Nov 2004 [Full text]

Homoepathy the better palliative

Dr.Rejikumar R
bmj.com, 29 Nov 2004 [Full text]