Key message: There is good evidence that home palliative care increases the chance of dying at home and reduces symptom burden, especially for people with cancer, without increasing caregiver grief.
Where would you prefer to die, if you had an advanced illness? More than 50% of people say they would like to die at home, given the choice, but in many countries relatively few people do; just 21% in England in 2010, for example. The need for home palliative care services is increasing as the ageing population expands and an understanding of their impact on death at home and on things that matter to patients and their carers, such as how well symptoms are controlled and how they feel about their care, is important in working out how current services need to be expanded or improved.
A new review from the Cochrane Pain, Palliative and Supportive Care Group looked at the impact of home palliative care services on the chances of dying at home and on other outcomes for patients and their caregivers, such as symptom control and quality of life. The review team also aimed to compare resource use and costs associated with these services and summarize the current evidence on cost-effectiveness.
Twenty-three studies were included with 37,561 people with advanced illness and 4042 family caregivers. Most had advanced cancer but other conditions included congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and Multiple Sclerosis (MS). Sixteen studies were randomised controlled trials (RCTs), including six of high quality, and results were combined (meta-analysis) where possible. All came from high-income countries, including five from the UK. Home palliative care was compared with ‘usual care’. Different models of home palliative care were assessed but most were based in hospices or hospitals and involved multi-disciplinary teams ranging from two to thirteen professionals, most often including nurses, doctors and social workers.
What did they find?
- Meta-analysis showed that home palliative care more than doubled the chance of dying at home (7 trials with 1222 patients, including 3 high quality RCTs). For one additional patient to die at home, five would need to receive home palliative care rather than usual care
- Home palliative care services showed a small but statistically significant effect on reducing symptom burden
- No difference was seen in caregiver grief
- Evidence on other outcomes including pain control, satisfaction with care, physical function, caregiver burden and quality of life is mixed and no clear conclusions can be drawn
- Evidence on cost-effectiveness is also inconclusive
How good was the evidence?
- The review provides good, reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden, especially for those with cancer, without increasing caregiver grief. The evidence for other outcomes was inconclusive or conflicting
- Lots of the studies are more than ten years old and under-represent those who live alone or have no care-giver, yet these are important groups to consider in developing home palliative care services today. Recent studies tended to have more positive findings
- Studies were often small and may have lacked the power to detect treatment effects
- The six studies that examined total costs were considered high quality economic evaluations but were small and had varying methods and items of resource use that meant they couldn’t be combined
The reviewers note that more work is needed to study the cost-effectiveness of these services, especially for people with conditions other than cancer and with outcomes that are relevant to them. Different models of home palliative care also need to be compared.
Translating the evidence into practice
So what does this review mean for people working in the field and the people in their care? Andrew Gammon, Community Clinical Nurse Specialist in Palliative Care at Kirkwood Hospice, Huddersfield, had this to say:
“When it is known that a person’s life expectancy is short, time spent at home can become very precious. In my role as a community specialist nurse, I see how much this can matter to our patients and their families every day. I will always remember the patient’s wife who had agoraphobia. Her fear of him “going into hospital to die” and not being able to be by his side. They both cried with relief when I explained that we could care for him at home. Managing complex symptom problems at home, in partnership with District Nurses and GPs, keeps many patients where they want to be, at home, and not in hospital. It is encouraging to have good, reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden. The evidence is needed to influence the commissioners of future services.”
Tim Chapman, Senior Commissioning Manager, Oxfordshire Clinical Commissioning Group agrees:
“This is a very helpful review as it supports our Locality Commissioning Plans. It is important that our initiatives are based on the best available evidence of effectiveness for patients. We are introducing new mechanisms in primary care and community services to make it easier to identify those patients likely to be in the last year of life, in order to provide early, effective, proactive management so that they are able to die at home, if that is their wish. This will also reduce the number of avoidable hospital admissions in that last year. In addition to better patient care, we expect to see a 10% reduction in deaths in hospital which, for Oxfordshire, equates to 388 episodes of care with a total cost saving of £853,600.”
Tomorrow’s conference on ‘Improving Outcomes for People approaching the End of Life’ puts a spotlight on ensuring that people spend the last days of life in their place of choosing, as highlighted in the Department of Health’s End of Life Care Strategy Fourth Annual Report. You can follow this conference on Twitter using the hashtag #endoflife. The Dying Matters coalition will be part of that event. They encourage people to talk about their wishes towards the end of their lives, including where they want to die and their website is well worth visiting. Dying matters to us all and where we die matters too.
You can read more on this review in an interview with review author Barbara Gomes in the European Journal of Cancer here.
Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews 2013, Issue 6. Art. No.: CD007760. DOI: 10.1002/14651858.CD007760.pub2.
Department of Health. End of Life Care Strategy: Fourth Annual Report. London: Department of Health; October 2012. Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136486/End-of-Life-Care-Strategy-Fourth-Annual-report-web-version-v2.pdf
Sue Ryder. A time and a place: what people want at the end of life. July 2013 http://www.scribd.com/doc/152645404/A-time-and-a-place-What-people-want-atthe-end-of-life