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Developing primary palliative care
Scott A Murray, Kirsty Boyd, Aziz Sheikh, Keri Thomas and Irene J Higginson
mit freundlicher Genehmigung des Verlags

Kontakt 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 omitted to choice for patients must improve this figure.3 Developing f palliative care services in primary 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 live care for the 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 inn 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, though 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 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 the day ,other developments to achieve the quality indicators are tracking precedence. By the 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 the 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 graining momentum within primary care . The Gold Standards Framework is a resource for organising proactive palliative care in 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 provision by generalists and to share examples of good practise.

To support such developments it is essential that primary palliative care is supported by an adequate academic base.
11 This admittedly a challenging arena 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 apposition 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 holistic in the community may be less likely to require expensive admission to hospital and often futile treatments at the end of their lives.

Scott A Murray clinical reader
Kirsty Boyd honorary senior lecturer
Aziz Sheikh professor of primary care research and development

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

Keri Thomas national clinical lead palliative care

Cancer Services Collaborative, Birmingham, B24 0DE

Irene J Higginson professor

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

Competing interest: None declared.



1 Higginson I, Scen-Gupta GJA. Place of care in advanced cancer. J Palliat Med 2004;3:287-300.
2 World Health Organization. Palliative care: tho 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 ist the best way to help carcgivers in cancer and palliative care? A systematic literature review of interventions and their effectivences. Palliat Med 2003;17:63-74.
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 TE Exploring the spiritual meeds 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.
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
9 Murray SA, Boyd K. Kendall M, Worth A, Benton TE. Dying of lung cancer or cardiae failure; prospective qualitative interview study of patients and their carers in the community. BMJ 2002;325:929-32.
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.

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