19 Oct Home Death From Cancer Linked To Less Grief and More Peace
MedicalResearch.com Interview with:
Barbara Gomes BSc MSc PhD
King’s College London, Cicely Saunders Institute
Dept Palliative Care, Policy & Rehabilitation
Medical Research: What is the background for this study?
Dr. Gomes: We knew from our previous research that most patients with advanced cancer would prefer to die at home, but many do not achieve this. In many countries, an undesired hospital death is still the most common. We wondered whether this was because the quality of death was better in hospital than at home, so we examined the existing evidence and found out that the studies contradicted each other; some suggested that dying in hospital was better than at home and some found it was worse. Therefore, we decided to examine three things:
- Whether people who died at home experienced more or less pain and peace than those who died in hospital;
- whether the family carers of people who died at home experienced more or less grief;
- The factors needed to enable death at home.
We wanted to find ways to improve care for patients and families facing serious life limiting illness, to more closely meet their preferences and needs and to empower them.
Medical Research: What are the main findings?
Dr. Gomes: We found that patients who died at home experienced more peace in their last week of life than those who died in hospital. There was no difference in pain levels. And grief was less intense for relatives of patients who died at home, both around the time of death and at questionnaire completion (which was about 4-10 months after the patient died).
We also developed a model that explained well why some patients die at home whilst others die in hospital. Four factors are almost essential; they were present in more than 91% of home deaths:
- Home death preference by the patient;
- Home death preference by their relative;
- Receipt of home palliative care in the last three months of life;
- Receipt of district/community nursing in the last three months of life.
In addition, patients who died in hospital were less likely to have had Marie Curie nursing (these nurses care for people at home in the last few months or weeks of their lives, with the core service being one-to-one overnight nursing); only seven patients who received care from these nurses died in hospital.
Importantly, patients who discuss preferences, have home visits from their GP and whose relatives take more days off work also had greater odds of dying at home.
The study shows these elements of support need to be in place in order to meet patient preference and ensure the best possible outcomes.
Medical Research: What should clinicians and patients take away from your report?
Dr. Gomes: The decision to die at home is a complex decision. Through our research we show that dying at home is a tangible goal, one that can be achieved in comfortable conditions (with more peace and less grief), but it requires wide support.
We urge people to discuss their preferences early on with the family and health professionals and to consider not just one factor but the whole range. Some relate to the illness; some relate to the person, their preferences and beliefs; some relate to the support from healthcare services people can get; and some relate to their sources of family and social support.
It is important to speak with a skilled healthcare professional experienced in caring for people with an incurable disease at home to do a careful assessment of the situation and care plan. Re-visit the decision regularly as the clinical situation or context may alter and people can change their mind (in the study, we found this happened for a fifth of the relatives).
Clinicians must ensure these critical discussions about preferences take place. End of life conversations take time and training; they are currently not paid for and do not happen as often as they should. Whenever there is a wish from the patient for death to occur at home, clinicians should secure access to a comprehensive home care package, including specialist palliative care services and 24/7 district/community nursing. They should also pay attention to the needs and preferences of the family, providing them support to care for their dying relatives at home, if they share that wish too.
Medical Research: What recommendations do you have for future research as a result of this study?
Dr. Gomes: The QUALYCARE study shows what the reality is for people who die with incurable cancer. Importantly the situation for patients dying from non-malignant conditions may be very different as illness trajectories are less predictable and access to expert palliative care is much lower than for patients with cancer. Thus we urgently need to study the experiences of people with non-cancer conditions and how to improve their care.
Our findings also highlight the need to measure family preferences and outcomes, given the crucial role of families in caring for patients at home and in decision-making processes. Families are often missed out of hospital services, and in studies. That is something we hope will change.
Finally, we identified service factors associated with home death. We need to know now which combinations are most cost-effective and most valued by patients and families, including the best and most cost effective ways to provide out of hours expert palliative care in the community. It would be very useful to evaluate more the variation that exists currently, and also to test some demonstration pilots of better care.
Barbara Gomes BSc MSc PhD (2015). Home Death From Cancer Linked To Less Grief and More Peace