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:
Home palliative care keeps people where they want to be, at home
“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.
Links:
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
Evidently Cochrane 
Everything changes, and clinical nurse specialists have seen and worked with many changes to the palliative care landscape. With 45 years experience between us, working across all sectors, Andrew Gammon and I have developed and adapted to meet the new challenges.
Anecdotal evidence tells us that more of our patients today hope to have their end of life care at home. We have seen the paradigm shift from hospitals’ ownership of illness and death, to care in the community. Most admissions to hospital in end of life care are due to symptom management problems or carer breakdown. In essence, patients and their carers often change their minds. When they make the decision to stay at home, they make it not understanding how difficult coping can be. As clinicians ‘We know’ how hard it can be, we anticipate the problems, and crucially, we plan for them.
The 2012 report from the National Council of Hospice and Palliative care Service clearly shows that more patients die at home when community specialist services are involved.
Relieving the burden of physical symptoms and providing meaningful psychological support is at the core of what we do. And we are lucky enough to have a team of professionals to do this with. Medical consultants, social workers, psychotherapists and occupational therapists all contribute to meet the patient’s needs. People only die once, we make memories that last for ever, and we do it with as much enthusiasm as we ever did. Patients live longer and present or develop more complex pathologies, expectations have risen, the public are more informed and patient choice is high on the agenda. The community infrastructure of professionals is pivotal to care provision. The care remains primarily the responsibility of general practitioners and district nurses. Community specialist nurses work alongside those professionals to meet any specialist needs. As a team of four we see 400 new patients every year, after one year only 20% of those patients are still alive. As one patient dies, another is referred to replace him/her. The work is relentless, 600,000 people die annually in the UK. As professionals we know this, our objectives are realistic: to improve every situation, to ensure, when possible, that patients die in the place of their choosing, and the worst of times is made easier for our patients and their carers because we were involved.
This takes more than being kind, it takes knowledge and skill to anticipate and plan care. There is no such thing as disease of the spirit, and ours remain high. The love of my job, working out there in community, inspired me to write my book: Communication in Palliative Care. Radcliffe Press. It meanders through the issues from diagnosis to death, in an easy to read style. It has been well received by all professionals, excellent reviews and has recently been CPD accredited. It was a joy to write, to keep the complex simple and bring some patients back to life.
Janet Dunphy
Community Clinical Nurse Specialist Palliative Care
Kirkwood Hospice, Huddersfield
Thank you for your thoughtful and inspiring comments, Janet.
Here at the Cochrane Pain, Palliative and Supportive Care Review Group, we agree this is an important topic and that there is still a need for more evidence on effective palliative care models. We hope the reviews we have published to date will encourage better trials, as well as providing an overview of the key topics for palliative medicine.
If you would like to find out more about our reviews, see our website at papas.cochrane.org. We are always pleased to hear from you, so do let us know what outcomes you want to see reported in palliative care trials.
Anna Hobson
PaPaS Managing Editor