Researchers at Marie Curie Cancer Care, the University of Edinburgh and NHS Lothian, have reported that only 20% of non-cancer patients are receiving palliative care before dying.
The study, published in the European Journal of Palliative Care, is the first of its kind in the UK to examine the point at which patients are formally identified for palliative care. The research team investigated cases from nine GP practices and the cases of 684 patients in Scotland. It was found that only 20% of patients diagnosed with heart, lung, liver or kidney conditions (organ failure) or dementia, either requested or were identified for palliative care before dying, compared to 75% of cancer patients. The researchers also found that the gap between diagnosis with a life-threatening illness and receiving palliative care was considerable and that many patients receive this extra support too late to fully benefit. Key findings included:
• Most patients were identified for palliative care too late to fully benefit – on average only eight weeks before dying.
• GPs said that introducing palliative care was fairly straightforward for those with cancer, who typically had a clear terminal decline but much more difficult for patients with other life-threatening illnesses.
• Some GPs found it difficult to raise and discuss death and dying with patients, particularly with patients with a non-cancer diagnosis.
• Both patients and health professionals struggled with understanding of end-of-life/ palliative phrases, further confusing the issue.
The study concluded that a gradual and longterm approach to phasing in supportive and palliative care while continuing with other treatment care planning would benefit patients and their families. Anne Finucane, co-author of the report from Marie Curie Cancer Care, said: “It is clear from our study that most people with a non-cancer diagnosis are not identified for palliative care before they die. These patients are missing out on the benefits that a palliative care approach could provide including symptom relief as well as social, psychological and spiritual support. “Patients and healthcare professionals should be encouraged to talk more openly about death and dying so that patients have a better understanding of what lies ahead, and are provided the support they need when making important decisions relating to their future care. More openness around death and dying will help patients to live as well as they can in the last months, weeks and days of life.”
