8 Palliative care in non-malignant disease

The majority of patients in the UK (over 90%) receiving specialist palliative in-patient care services have cancer. There is increasing recognition of the unmet need in patients with other progressive, incurable, non-malignant diagnoses which has been highlighted by recent publications. The Departments of Health in the UK are striving to redress this balance, dictating that all the patients with end-stage illness should have access to the services offered by multidisciplinary palliative care teams.

Specialist palliative care inpatient units have traditionally been wary about taking responsibility for patients in whom the prognosis is uncertain, with the fear that precious resources would become overburdened by patients with longer term chronic illness. Studies in motor neurone disease (MND), however, showed that patients did not ‘block’ specialist beds any more than any other patients, and most hospices now accept patients with MND and other progressive neurological diseases into their programmes. It was perhaps the emergence of AIDS in the mid-1980s that made all specialist units take notice of a group of dying patients for whom they felt obliged to take some responsibility.

Patients with end-stage non-malignant disease suffer from as many distressing symptoms as those with cancer. Despite this, there remains a lack of confidence in looking after patients with less familiar illnesses. This may partly stem from the fact that the dying phase is often different from that seen in cancer. It has been noted that the trajectories of illness fall into four general patterns.¹ Patients dying from cancer often have a plateau phase during which they tend to deteriorate gradually over time until the final three months of life, and usually it becomes obvious when the terminal phase is entered and when treatment and interventions can be aimed more at comfort. Patients dying from organ failure such as chronic heart or lung disease, on the other hand, are often deteriorating over a somewhat longer period, interspersed by acute episodes that may be better managed within a hospital environment, where acute care management is both appropriate and readily available. Patients with dementia and general frailty, however, generally have poor function from much earlier in the trajectory, and their care needs reflect this increased dependency. The fourth group is made up of people who suffer sudden, unexpected death.

This may highlight educational and training issues, but does not mean that the palliative care team should take over the role of other specialist teams. Rather they should work alongside specialists in the other fields, ensuring that the principles of palliative care are upheld and that patients and their families receive optimal treatment.

The percentage of the population over 65 years has increased and will continue to do so. The main causes of death are organ failure such as heart disease, cerebrovascular and neurological disorders and chronic respiratory disease making up approximately one-third of deaths, dementia, debility and frailty forming a further third and cancer making up one-quarter of deaths. Sudden death accounts for the final twelfth.² Palliative care teams will need to find a way to deliver appropriate care to all patients regardless of diagnosis. To this end, there is a higher percentage of patients with non-malignant disease in the hospice movement in the USA (20–30%) and there is evidence that this trend is increasing in the UK, particularly within hospital specialist palliative care services.

With increasing dialogue, partnership, research and funding, the vision of providing services where they are needed should be a realistic aim.

Several attempts have been made to develop prognostic indicators for non-cancer patients, in an attempt to plan the best palliative care for this diverse group. As with cancer prognostic schemes, a search has been made to find one or more measurable indices which could correlate with survival. However, the approach using a combination of functional ability and specific laboratory parameters seems to be the most fruitful so far. The Gold Standards Framework and the Royal College of General Practitioners have developed the Prognostic Indicator Guidance which is helpful.²