Better information is needed to improve palliative care services

That we all face death is a fundamental truth. And, although beliefs about dying vary, the desire to be as comfortable as possible when the time comes is universal. Yet, each year, more than 100,000 people in the UK who could benefit from palliative care do not receive it, according to a report by the London School of Economics and Political Science.

Commissioned by the charity Marie Curie, which works to help people with terminal illness, the report looks at the evidence of inequalities in palliative care provision in the UK.

One counterintuitive finding is that people over 85 years of age receive proportionately less specialist palliative care than younger age groups; although 39% of deaths occur in this age group, only 16% receive this level of care. There are also differences in the experiences of people living in more affluent areas compared with deprived ones. For example, in more deprived areas people are more likely to die in a hospital than at home.

Care in the spotlight

It is not the first time in recent years that end-of-life care in the UK has come under scrutiny. An established system for supporting people in their final days and hours of life — the so-called Liverpool Care Pathway for the Dying Patient (LCP) — was lambasted in a 2013 review, commissioned by the UK government and chaired by Baroness Julia Neuberger. The LCP was developed by Royal Liverpool University Hospital and the Marie Curie Hospice in Liverpool in the late 1990s to address shortcomings in hospital care for patients dying with cancer. The review recognised that the LCP was a model of good practice but found it had been used inappropriately by clinicians in many cases and that this was a source of great distress to families; the government subsequently scrapped the LCP and replaced it with a set of priorities for individualised care for dying patients.

The current report looks more broadly at care for people with life-limiting illnesses, not only those in the final days and hours of life. Patients with non-cancer conditions are less likely to receive palliative care than those with cancer, according to the LSE report, even though deaths from cancer represent less than a third of those eligible for palliation. This finding is unsurprising, since the UK hospice movement was largely formed to support people with end-stage cancer.

There are challenges in getting palliative care to those with non-cancer conditions, such as heart failure, chronic obstructive pulmonary disease and neurodegenerative conditions. The course of such conditions is highly variable and often unpredictable, making it difficult for clinicians to establish an appropriate time to introduce palliative care. Whether a patient would want to be made fully aware of their prognosis, and the options for palliative care, is not explored in the LSE report. However, the report does cite evidence of poor communication between clinicians in all care settings and patients and families. It is not clear if this was caused by a reluctance among clinicians to discuss death, a lack of confidence, personal beliefs or some other reason. More research is needed in this area.

Investment justified

Each of the four UK governments has a strategy for end-of-life care, describing how palliative care can be extended to support everyone who needs it, although it would seem the current financial position of the NHS could represent a major barrier in meeting this commitment.

However there is a compelling case for investment. The LSE report concludes that providing palliative care costs less than, or is at least as affordable as, non-palliative treatment — owing to savings in acute and emergency care. But with this investment comes better outcomes for patients in terms of symptom management and them dying in a place of their choosing.

There are several areas in need of attention. Palliative care teams in most hospitals are under-resourced compared with national recommendations. Community-based palliative care services are in need of organisational development, especially for non-cancer conditions. And more specialist input is required in care homes.

In spite of these gaps, the situation is not all bad. The National Survey of Bereaved People in England 2013 reported ‘outstanding’, ‘excellent’ or ‘good’ care for 81% of those who died at home, 84% of those who died in care homes, 85% of those who died in hospices and 69% of those who died in hospital. Indeed, looking globally, the UK came out on top in a league table of 40 countries, the Economist Intelligence Unit’s quality of death index.

One major issue that requires attention is the overall dearth of information on palliative care provision in Wales, Scotland and Northern Ireland compared with England. Many of the projections for these countries were extrapolated by the LSE researchers from the annual National Survey of Bereaved People in England.

The paucity of data probably mirrors the lack of coordination of services for palliative care in general. Not only must the health service in each UK country be better equipped to support people with life-limiting illnesses, whether cancer or some other condition, it is vital to collect information about their experiences and outcomes, and those of their carers, so services can be improved.