Patients are missing out on essential palliative care

Dr Anne Finucane

Dr Anne Finucane, Research Facilitator at Marie Curie Hospice Edinburgh, Scotland, and Member of the Primary Palliative Care Research Group at the University of Edinburgh, explains the background to a longer article published in the September 2013 edition of the European Journal of Palliative Care.

Early palliative care results in improved symptom management, enhanced quality of life, better treatment planning and end of life decision-making, and has even been found to lengthen survival. Given such advantages, it is vital that all patients who might benefit have access to palliative care earlier rather than later.

We examined if some patients were less likely to be identified for palliative care than others; and investigated the length of time between identification for a palliative approach and death. We examined the notes of 684 deceased patients, and interviewed 11 GPs and nurses in nine general practices in Scotland. We were particularly interested in whether the patients had been identified on the practice palliative care register (PCR) before they had died.   In the UK, the palliative care register is used in the practice to identify any patient that is thought to have supportive and palliative care needs.

We found that only 20% of non-cancer patients were identified for palliative care compared with 75% of patients with cancer. GPs said that identifying cancer patients for palliative care was fairly straightforward; however, it was much more difficult for other patients. Irrespective of diagnosis, most patients received palliative care too late to fully benefit – only seven weeks before dying.

Patients find it difficult to talk about death and dying, and doctors and nurses find the subject difficult for fear of causing the patient distress. Consequently for most patients, especially those with a non-malignant disease, there is no chance to explore, plan or express preferences for future care. Without discussion and planning patients are less likely to receive the care they want and then end up dying in hospital – the least preferred place for most people.  Patients may remain unprepared for the last phase of life practically, socially and emotionally. Late identification makes discussion even more difficult, as the patient is frailer and potentially more anxious.

As a society we must be more open about death and dying. The government has started campaigns to address this – Good Life Good Death Good Grief in Scotland and Dying Matters in England. Currently most people die without having a conversation about it with their GP. We must let patients know that it is very positive to talk about and plan for dying, as then it is more likely to happen as the patient wishes. Nurses and doctors must also realise that most people would like an opportunity to talk about what might happen in the end.  Death provokes anxiety in people, but talking about it and planning in advance can help alleviate anxiety, and help patients and their families live as well as they can in the last months, weeks and days of life.

Read the full article in the September issue of the European Journal of Palliative Care

Find out more…
The full article to which this post relates, ‘How good are we at identifying patients who need palliative care: a mixed methods study’ by Lilin Zheng, Anne M Finucane, David Oxenham, Peter McLoughlin, Hazel McCutcheon, Scott A Murray is published in the September 2013 issues of the European Journal of Palliative Care (vol. 20.5). 

If you already have a web-based subscription to the EJPC you will be able to download this issue, plus all articles in the EJPC archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription.

Some useful links…

• Primary Palliative Care Research Group 
• Good Life Good Death Good Grief 
• Dying Matters