It’s Dying Matters Awareness Week, an opportunity to place the importance of talking about dying, death and bereavement on the national agenda and to share Cochrane evidence that may help inform choices for those at the end of life and those caring for them. Here, Palliative Medicine doctor Anna Sutherland shares her thoughts on a Cochrane review on hospital at home.
Increasing significance has been placed on achieving a person’s preferred place of death in recent years. In 2013 there were 473,552 deaths in England, of which 22% of people died at home, 22% in a care home, 6% in a hospice and 48% in hospital. What is not known is how many of these people died in their preferred place of death. (NEoLCIN)
As a Palliative Medicine registrar I have found that, in reality, a person’s preferred place of care and death will change as their illness, symptoms, prognosis, and social circumstances (such as care needs, primary carer fatigue, etc.) alter. I am often frustrated by the idea that a person’s preferred place of death is a constant concept. In my experience it is a decision that varies over time. I find it more useful to ask where they might like to be cared for and ultimately die in the ideal circumstances if their symptoms were well controlled and things were well set up at home. I then ask the person to think about the worst case scenario, that they could not cope or had uncontrolled symptoms and ask where they would like to be cared for in that scenario. Without this “opt out” plan I find people can sometimes struggle on too long before finally requiring a crisis admission, during which the patient or family members can experience tremendous guilt because they feel they have “failed”.
Asking the right questions
However, the choice of place of death is only as good as the question being asked. Sometimes people may think they are being asked where they would like to spend their last weeks or months, rather than their last days. This is an important difference to make when we study this, although it is not always easy to separate the two (Gomes 2013). Additionally, often doctors find in practice that people, who would rather be at home, may change their minds if home becomes difficult (for example, if it is too difficult to control the pain at home) (Pollock 2015). We mustn’t forget that despite our best intentions to uphold people’s wishes, for some people where they die may simply not be important to them. (Van der Heida 2007)
There is a lot we still don’t know about people’s choices about their preferred place to die (PPD). It is widely thought that most people, given the choice would prefer to die at home (DOH 2008, Higginson 2000). However, the exact figures for those choosing to die at home varies so widely (31-87%) that it is difficult to know for certain (Gomes et al 2013). The chance of dying in their preferred place has been shown to fall if you have chosen to die at home (Bell 2010) compared with other care settings.
There is also wide variation around the UK in the percentage of people who die in their usual place of residence. (Atlas of Variation) A death in a usual place of residence does not necessarily reflect any previous preferred place of death discussions. It simply means that this was where they did die. There are likely to be many reasons for this.
Towards a good death at home
Despite all these uncertainties, a Cochrane review “Hospital at home: home-based end-of-life care” recently demonstrated that the involvement of a home-based end-of-life care service increases the likelihood of achieving a death at home according to studies from Norway, UK and US. This result was taken from high quality evidence.
The review defined end-of-life care at home as “the provision of a service that provides active treatment for continuous periods of time by healthcare professionals in the patient’s home for patients who would otherwise require hospital or hospice inpatient end-of-life care”. However, we as a specialty, still don’t know what exactly this service should be in terms of how many healthcare assistants, specialist palliative care nurses, and palliative medicine consultants should be in the team and how often they should visit.
“We are at the beginning of understanding how to deliver home-based end-of-life care”
Additionally, the review showed that patients are more satisfied when they receive end-of-life care at home if they are asked the question after one month, but that satisfaction falls if they are asked after 6 months of care. The review also raises a suggestion that end-of-life care at home might take its toll on the mental health of caregivers (relatives and friends) although the evidence for this is more uncertain.
As someone approaches the end of their life there is a lot to consider for them, their partner, relatives, friends and care givers so that their final days can be as comfortable and dignified as possible. Although we now know that home-based end-of-life care increases the chances of dying at home, we are still at the beginning of understanding exactly how to deliver this and whether it is possible to do so throughout the UK.
This blog was originally published on Evidently Cochrane, a blogs site that usually features new or updated Cochrane reviews on a health topic.
Competing interests: None declared.
References:
, , , . Hospital at home: home-based end-of-life care. Cochrane Database of Systematic Reviews 2016, Issue 2. Art. No.: CD009231. DOI: 10.1002/14651858.CD009231.pub2.
Plain language summary of this review http://www.cochrane.org/CD009231/EPOC_home-based-end-life-care
Public Health England. End-of-life care: Map 66: Percentage of all deaths in an area that occurred in hospital by upper tier local authority, 2013. In: NHS Atlas of Variation in Healthcare: reducing unwarranted variation to increase value and improve quality. London: RightCare; 2015 September. pp 184-186. Available from: http://www.rightcare.nhs.uk/atlas/maps/Atlas_290915_EndofLife.pdf (accessed 18 April 2016)
Bell CL, Somogyi-Zalud E, Masaki KH. Factors associated with congruence between preferred and actual place of death. Journal of Pain and Symptom Management 2010;39(3):591-604. DOI: 10.1016/j.jpainsymman.2009.07.007.
Department of Health. End of life care strategy – promoting high quality care for all adults at the end of life. London: Department of Health; 2008. Available from:http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_086345.pdf(accessed 29 February 2016)
Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review.BMC Palliat Care 2013;12:1-28. DOI: 10.1186/1472-684X-12-7.
Higginson IJ, Sen-Gupta GJA. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000;3(3):287-300. Available from: http://www.ncbi.nlm.nih.gov/pubmed/15859670
Public Health England, National End of Life Care Intelligence Network. “What we know now: new information collated by the National End of Life Care Intelligence Network”. National End of Life Care Intelligence Network, Resources, 26 June 2015. Web. 18 April 2016.http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now_2014
Van der Heide A, de Vogel-Voogt E, Visser A, van der Rijt CC, van der Maas PJ. Dying at home or in an institution: perspectives of Dutch physicians and bereaved relatives. Support Care Cancer 2007;15:1413-21. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2071950/