Preferences and priorities at the end of life

by Dr Jane Collins
Chief Executive

Dr Jane Collins, Chief Executive, Marie Curie Cancer CareSince 2004, Marie Curie Cancer Care has campaigned for people who are terminally ill to be able to be cared for and die in the place of their choice. Based on polling of the general population, we have said that for the majority of people this would be in their own homes. The publication of the National Survey of Bereaved People and academic research published over the last decade is giving us a deeper understanding of choice at the end of life. What we are seeing is that for many people its not about where they die so much as it is about the people around them when they die.

What the numbers tell us

One of the interesting things Marie Curie’s own polling shows is that home is a less popular choice as a place to die amongst older people. Overall, 65 per cent of the general population say they would like to die at home. However, for people aged 18 to 24, this figure is 79 per cent and for 55 and older this drops to 61 per cent.

Preference for dying in a hospice or nursing home rises with age. Just 4 per cent of 18 to 24 year olds say they would like to die in a hospice or nursing home, but this rises to 25 per cent for people over 55.

Academic research confirms this trend. One study shows that for people over 65 the preference to die at home drops to 49 per cent, and another study has shown that for people who are actually terminally ill, 47 per cent would prefer to die at home.

We think this trend is explained by the fact that as people get older or get ill they become much more aware of their care needs and want to be in a place where they can get the right care.

What people really want

Home can be a very difficult place for someone to be ill. We at Marie Curie know that we are very good at providing care at home, but not everyone who is terminally ill has a positive experience. In the recent National Survey of Bereaved People, only 17 per cent of people who died at home had their pain controlled always, all the time. By contrast, this figure was 62 per cent in hospital. 91 per cent of Marie Curie patients rated their pain control as good or very good in the last year.

What is particularly interesting from the National Survey of the Bereaved is that while a large number of people who are dying are not getting enough choice about where they die – 44 per cent said their loved one had a choice about where they died – 82 per cent of respondents said their loved one had died in the right place. What makes this more remarkable is that the majority of people died in hospital, which was rated by bereaved relatives and carers as the place with the lowest quality of care for people who were terminally ill.

We should not read from this result that carers and relatives want vastly different things from their terminally ill loved ones. While it is true that a carer or relative being sympathetic to a person’s wish to die at home makes it more likely for them to achieve this, research shows that the majority of carers and relatives would also like their loved one to die at home.

What it indicates is that place of death not be as great a priority for people who are terminally ill as we thought it was. Two studies from the last decade show that being around loved ones and relief of pain are more important to people who are terminally ill than being able to die in the place of their choice.

Listening and learning

This isn’t to say that choice for patients at the end of life should not be our concern. Indeed, where both patient and family are desperate to get out of hospital, for example, and receive care instead from a community service, it is imperative that we enable this, if the patient’s condition will allow it. However, we must be certain to listen to all the preferences expressed by those at the end of life, not just about the place of care, and we must consider their preferences in the context of their relationship with family and friends and the nature of their illness.

Choice about place of death is complex for people at the end of their life and also for their families and their carers. For many, it’s not the four walls that surround them when they die that really matter, but the people around them. It is important that the quality of care they receive allows them to fully appreciate the time with those loved ones. As providers of palliative care, the most important thing we can do is create the comfort and the space for this to happen, whether this be at home, in hospice, a care home, a nursing home, or a hospital.