VOL: 97, ISSUE: 21, PAGE NO: 38
Maggie Bisset, MSc, RGN, is a consultant nurse, Camden and Islington Community NHS Trust, London
Vicky Robinson, BSc, RGN, is clinical service manager (palliative and continuing care) and nurse advisor andRob George, MA, MD, FRCP, is clinical director, Palliative Care Centre, Camden and Islington Community NHS Trust, LondonPalliative care is the approach taken when dealing with patients with progressive and incurable diseases. It is interdisciplinary and manages patients as a whole: their emotional, social and spiritual lives are seen to affect quality of life just as much as their underlying disease.
Palliative care is the approach taken when dealing with patients with progressive and incurable diseases. It is interdisciplinary and manages patients as a whole: their emotional, social and spiritual lives are seen to affect quality of life just as much as their underlying disease.
Programmes of care have developed in the past 25 years, and there is good evidence that both patients and carers have benefited from expertise in these areas (Franks et al, 2000).
Historically, palliative care was seen to be for people such as Blanche Heywood (Box 1) - seen to mean terminal care, relevant in the final 48 hours of life and confined to cancer patients. This is no longer the case. Our duty is to care for patients irrespective of illness, circumstance, environment or status (Tebbit, 1999).
So how do patients such as Doris Pleasance and Darren Green fit into our classification (Box 2)? Do they need specialist input? How can services help them?
The philosophy of health professionals working in palliative care is today considered to have a much broader application and to be part of mainstream core services to all patients. The services are not simply there when patients are dying but also on hand to support them through times of uncertainty and suffering.
Palliative and supportive care is now represented in the National Service Framework for Coronary Heart Disease, as well as The NHS Cancer Plan (Department of Health, 2000). Clinicians and commissioners are starting to accept the growing evidence that patients with other diseases also require palliative care (Franks et al, 2000).
The 'dying' spectrum
A useful way of thinking about palliative care is to see diseases as part of a 'dying' spectrum. At one extreme are patients with relatively predictable and relentless diseases such as disseminated malignancy, at the other are those with unpredictable, slowly progressing diseases such as multiple sclerosis or dementia. Between these extremes lie all those pathologies that may advance rapidly, kill unpredictably or respond in part to various treatments.
Some specialist services, such as our palliative care centre, which is part of Camden and Islington Community NHS Trust in north London, care for patients who have had a stroke, those with neurodegenerative conditions, those with renal, cardiac or respiratory failure, as well as patients with HIV/AIDS.
The centre provides specialist palliative care in the community and local hospitals. All palliative and supportive care falls under a single clinical service manager which has allowed us to develop a consistent network of home care and support across the area. For example, in addition to our night-time district nursing, we have accommodated the fluctuating need for care at home by using our trained team of carers, under the auspices of the Carelink service. This provides rapid response services for those in need of enhanced care at home, even at short notice (Box 3). From the beginning, we have operated a 24-hour on-call service. This has developed over the years to blend seamlessly with primary and hospital services (Fig 1).
However, practices differ considerably across the UK. This has not been helped by a narrow, or lacking, palliative emphasis in national service frameworks in areas other than cancer, for example elderly care. Whatever the diagnosis, patients' needs are the same: to be free of pain and symptoms; to complete tasks; to resolve relationships; to reflect on their lives and to make their farewells. Palliative care should be available across all areas.
The complexities of managing dying patients
The elements that contribute to this complexity include uncertainty in relation to prognosis, cultural diversity and age.
It is difficult to predict when a patient will die. Weight loss, escalating symptoms and poor physical function may be markers of decline but the rest is guesswork until the last hours of life (Box 4). This is particularly the case with slow-acting cardiac, respiratory and neurodegenerative diseases. Transitions can include long periods of stability, but often with many burdensome symptoms, punctuated by sudden deterioration.
What do we do when chronic progressive disease has reversible components? How do we know when, or if, it is futile to reverse the natural progression of the disease? If someone has unfinished business, acute medical management may be appropriate and should not be excluded because the patient has palliative care.
It is vital for care to be flexible and able to respond rapidly to a patient's changing clinical needs. To enable this, an open relationship between patients, families and nurses is essential.
Improving access to health care for ethnic minorities or marginal communities is high on the political agenda. Palliative care is no exception (Gaffin et al, 1996). In our experience, some communities:
- See the care of their dying to be a family obligation and that seeking outside help is a disgrace;
- Regard discussion of, or preparation for, death to be wrong on moral or religious grounds;
- May hold beliefs about disease that preclude conventional approaches to treatment or health care (Box 5).
A number of factors have led to patients from ethnic minorities being under-represented in palliative care or sometimes receiving inadequate care. One is disease incidence, another is the problem of communication.
Some cancers have a lower prevalence in ethnic minority populations (Balarajan and Raleigh, 1993), so it could be argued that the need for palliative care is likely to be lower.
However, epidemiological data depends on the accuracy of recording ethnicity, and this can be a grey area. In addition, the prevalence of a condition in the wider population does not necessarily reflect the underlying individual clinical need for care.
Non-cancer palliation is as relevant in ethnic minority communities as it is in any other population. For example, patients with sickle cell anaemia are not dying, but they require care when experiencing a crisis, when the pain can be overwhelming, chronic and difficult to control.
It is important to take into consideration any communication problems that may arise when dealing with patients from other cultures to enable us to communicate effectively. Translation goes beyond words and includes empathy, compassion and the nuances of non-verbal communication. Even with well-trained advocates, skill is required to convey difficult information sensitively and this takes time and consistency. This can be especially difficult in a busy hospital ward.
Last year, 34% of referrals to our service involved patients from ethnic minorities. But we are also involved in caring for homeless people and those from socially excluded groups, such as drug users and local refugee populations (Box 2).
How do we do this? Quite simply, we seek to fit in with others and not vice versa. We are learning how to get this right and some deaths still leave us with the feeling that we could have done much better.
Referrals to our service for people such as Doris Pleasance and Darren Green (Box 2) do not always come from the GP, district nurse or hospital team. Non-statutory agencies and social workers access the service when they have concerns about one of their clients or service users.
In such cases one of our first jobs is to establish a link between the person and the primary health care team. Relationships between our service and other agencies have evolved through joint working on individual cases, informal discussions and the training sessions we offer, which are open to those outside the NHS. This approach has improved patient care by integrating health and social care.
Age is another factor that should not be a barrier to accessing appropriate palliative care and it is vital to realise that patient needs and priorities at different stages of life stage require differing approaches.
For example, although more adults than children need palliative care (Franks et al, 2000), services must be able to cater for both groups. Palliative care of people in nursing homes has been identified as a neglected area and is currently receiving attention (Froggatt, 2000).
Matching services to clinical need
There is no magic recipe for an ideal palliative care service. But those involved must be willing to solve old problems in new ways and to risk fresh ideas and approaches. It is not about shaping services around the way we do or have done things.
Care of the dying has always been a part of nursing, but it has only existed as a specialty for a few decades. One unfortunate consequence of this specialisation has been to mystify and deskill general nurses and hamper their performance in this crucial area of health care. Care of the dying and newly bereaved should not be seen a specialist art but as a skill everyone should possess.N
- Patients' names have been changed