Other settings and patients without cancer

In assessing comprehensive palliative care services in a locality, other care settings must be considered. About 20% of people die in care homes and the end of life care provided for such people is important, though sometimes of variable quality. There are specific issues about care homes, such as their independent ownership, clinical governance, staff needs, multiple pathology of these patients, variable primary care arrangements, etc, which make this issue complex, and, despite best efforts, too often patients may be given suboptimal care and admitted to hospital in the final stages. Some care homes develop educational initiatives and specialist inreach and local guidelines, such as the use of pathways and frameworks, but this is an issue requiring further work to produce a more consistent high quality standard of care. Patients in private hospitals and community hospitals can sometimes be excluded from generalist and specialist palliative care services and provision may be suboptimal. Practices and procedures need to be agreed with the relevant staff and authorities to maintain high quality care for dying patients, such as symptom guidance, referral criteria, accessing specialist drugs, and support, etc.

The current provision of palliative care services in the UK still largely favours patients with cancer. Meanwhile, those with other common end stage diagnoses such as heart failure, COPD, renal failure, neurological disease, and dementia, who have equally severe symptoms with similarly poor prognoses, may have reduced access to services or specialist advice, especially in the community—for example, lack of specialist support, Marie Curie or Macmillan nurses, reduced access to advice or equipment etc. "Do I have to have cancer to get this kind of care?" is a natural response from patients with non-malignant but equally serious conditions. The improvements in management for patients with cancer by community providers need to be transferred to patients with other conditions. As an approximation, each year every GP has about 20 patients who die, of whom about five have cancer, five to seven have organ failure such as heart failure or COPD, and six to seven have old age comorbidities, frailty, and dementia, with one to two sudden deaths. The less predictable trajectories of illness in the group with organ failure mean greater hospital involvement and more difficulty predicting the terminal stages and introducing supportive care. For all patients with end stage illnesses, irrespective of the diagnosis, it is still important to apply palliative care principles, to recognise deterioration, and to include such patients in service provision—for example, specialist advice on accurate assessment and control of symptoms, respite care, access to equipment, information transfer, and handover forms.

End of life care is important (reproduced with permission of Samuel Ashfield/Science Photo Library)
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