New research published[1] on Monday 9 September from researchers at Marie Curie Cancer Care, the University of Edinburgh and NHS Lothian, reveals 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

  • 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 straight forward 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 long term 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, 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"

Professor Scott Murray from the University of Edinburgh said:

"Patients with cancer are generally well served by palliative care services, while people with other conditions often miss out on this opportunity for more psychological, emotional, spiritual and practical support. Better and earlier identification of all patients who may benefit from these services is vital so that they can receive the care they need, and not slip through the net.

"It's clear that if we are going to better improve the chances for everyone with both cancer and non-cancer diagnoses to benefit from palliative care, doctors and nurses should be comfortable and able to talk to and listen to patients when they want to talk about death and dying."

"The big challenge for patients is to talk about how you feel, and what you would like if you become ill, so that your relatives and friends and doctors know what to do."

Peter McLoughlin, co-author of the report from NHS Lothian said:

"Health and social care professionals in all settings across Lothian already offer supportive care throughout the patient pathway from clinical assessment, to diagnosis, treatment and follow-up. The findings from this study emphasise that many more people, especially those with non-cancer conditions, may benefit from a more explicit recognition of palliative care needs, at an earlier stage in the pathway, as part of care planning."