A study undertaken by a team from Marie Curie Hospice Edinburgh, published in British Medical Journal Supportive and Palliative Care, has revealed new insights into the preferences and wishes of people with terminal illness.1
The research, which looked retrospectively at the case notes of 1127 patients who died under the care of the Marie Curie Hospice Edinburgh in 2009 and 2010, reveals that three quarters (77 per cent) of patients receiving specialist palliative care were willing to discuss their preferences for where they would like to die.
Current evidence suggests that, when asked, most people would choose home as their preferred place of death, with very few choosing to die in hospital. But, preferences of the general population are not necessarily representative of people who are terminally ill. In this study, most people who had never spent time as an inpatient in the hospice wanted to die at home (79 per cent), whilst the majority of those who had been an inpatient- even if they had only been admitted once – wanted to die at the hospice (80 per cent). Researchers believe that this may be because patients in the hospice had more complex needs and/or less social support than those never admitted, or it may because they were familiar with the hospice and the staff.
Fewer than one per cent of patients said that they wanted to die in hospital, but those who did not nominate a preferred place of death were nearly three times more likely to die there than those whose preferences were known.
Of those who did express a preference, 85% died in the place of their choice.
Some 21 per cent of patients had a documented reason for why preferred place of death wasn’t recorded. This was most often because the healthcare professional considered it inappropriate to ask, either because they had not known the patient for long enough or were concerned about causing the patient too much distress. In other cases, patients were undecided, felt that the place was unimportant, had cognitive impairment or were unable to communicate. Only 15 per cent of patients who did not specify a preferred place of death were unwilling to have this discussion.
Dr David Oxenham, Medical Director of the Marie Curie Hospice Edinburgh, and one of the authors, said: “Our study shows that the vast majority of patients receiving specialist palliative care services are open to having conversations about their end of life care preferences and wishes – and that the services we provide support their choice. We hope these findings encourage those caring for people with terminal illness to feel more comfortable talking about death. The more that we know about where and how patients would like to be cared for; the greater the chance of meeting their wishes – a key priority of end of life care.”
1 “Preferred place of death for patients referred to a specialist palliative care service”
Arnold E, Finucane AM and Oxenham D.
BMJ Support Palliat Care. Published online first 27 May 2013. doi:10.1136/bmjspcare-2012-000338
2 Healthcare Improvement Scotland. Palliative and end of life care Indicators. March 2013