Your Questions on “End of Life Care” Answered by Dr Stephen Barclay
General Practitioner and Honorary Consultant Physician in Palliative Medicine
Dr Barclay is also a Principal Investigator for the End of Life Care theme of the NIHR CLAHRC (Collaborations for Leadership in Applied Health Research and Care) for Cambridgeshire and Peterborough.
1. What is meant by End of Life Care?
End of Life Care is generally understood as the care of patients in the last 12 months of life, although in some conditions the period of care may be much longer. Our CLAHRC Theme was originally “Old Age and End of Life Care” theme, which has now separated into two separate themes.
These terms have changed over the years you may have heard terms such as – terminal care, palliative care, supportive and palliative care, now we usually call it End of Life Care. The 2008 NHS End of Life Care strategy was the first time our NHS or any health care system in the world to my knowledge has produced a strategy for care at the end of life.
2. Why are new policies needed to integrate health research and care with End of Life Care?
Some people were concerned about the failings in how well people’s care was being provided and their physical and other symptoms were being controlled. There was also increasing concern over the choice agenda. Some people were not dying in the place that they would choose and there is increasing recognition that most people would prefer to end their days at home or in the care home where they are living, which is effectively their home.
The most common place of death in this country is the acute hospital setting, so many people are not dying where they want to die and some are not dying well. Some feel that society isn’t talking about End of Life Care issues enough and that if society as a whole talks about these issues more the standard of care will improve.
3. How will it make a difference to patients at the end of their life, surely the one thing they consistently say is that they want to be cared for at home?
There is certainly an increasing recognition that patients are not getting the care they deserve at the end of their lives. Professionals are increasingly aware that End of Life Care doesn’t just happen, it needs to be planned and managed carefully with a proactive rather than reactive approach.
In my post as University Lecturer in the General Practice and Primary Care Research Unit I am leading other studies around End of Life Care in the community that are not funded by CLAHRC, with a particular focus on the role of the Primary Health Care Team
Part of my University lecturer role is also to lead the teaching of medical students in End of Life Care. When I took over that responsibility eight years ago they had half a day in their three year clinical course but today they have ten days teaching on palliative care issues. We are regularly examining them in their finals on these issues too. There is now an increasing recognition that we need to prepare our doctors to look after people at the End of Life, whereas previously this just didn’t happen.
4. Who will you be working in partnership with to devise these new policies and strategies for End of Life Care?
The most crucial thing in delivering good End of Life Care is to ensure that the multi-professional team functions well. If you have a dysfunctional team you won’t give good End of Life Care. We need to make sure the professionals all talk to each other and listen to each other, and know what each others skills are.
There are many changes in the NHS particularly surrounding out of hours care, which can be a big source of anxiety for patients. If there is better communication between in hours and out of hours care patients will benefit. We are aware that the services and care available for people changes dramatically on a Friday afternoon at 6.30 pm and we need to address this.
5. Where will information about these new services be available and when, are we talking about a long lead in time before changes come into play?
I am involved with work with NICE – The National Institute for Health and Clinical Excellence - to produce quality standards for End of Life Care which will be published in November 2011. There will be a set of 15 statements to say what good NHS End of Life Care is in any setting at any time day or night.
At the moment the standard of care you receive can be a lottery. We know from the recent Palliative Care Funding Review that some PCT s spend a lot more than others. For example in Cambridgeshire at the moment in some parts of the County you may be able to get a Marie Curie Cancer Care nurse to stay overnight and in other parts of Cambridgeshire you can’t: the service is funded in some areas but not others. I am working with the PCT to ensure equity of provision across the whole County.
6. You work in a field that can at times be “controversial” with high profile cases when things go wrong, are you working towards helping to overcome these difficulties of the past?
I Chair the Cambridgeshire PCT End of Life Care Working Party and our top priority at the present time is to commission a 24 hour home care nursing service to address any gaps or failings there may be. We are developing a business case for this which I have to admit is tough in the current economic climate. Also at the present time the Cambridgeshire hospice Arthur Rank House are expanding their Hospice at Home Service, funded by the hospice Charity which is helping to address this need: the CLAHRC Team are undertaking an evaluation of this development.
With a diagnosis of cancer it is easier for clinicians to identify who their End of Life Care patients are. However you have to remember that three-quarters of deaths are not from cancer and it can be very difficult to predict when End of Life Care is needed for them.
As part of our CLAHRC research studies we reviewed all the published research to date concerning End of Life Care with patients with heart failure and found that they almost never discussed End of Life Care with health care professionals. They appear to be ambivalent about such discussions. Patients may not understand heart failure is a terminal condition, and for their part the health care professionals fear destroying hope by premature discussions.
7. Will patients be forced to talk about End of Life Care against their wishes?
No. Part of the NHS End of Life Care strategy is an initiative “Dying Matters” that seeks to encourage society as a whole to talk more openly about death and dying. This initiative is seeking to change Society’s attitudes to death and dying, which is an ambitious objective! Some people are anxious that this may be imposing a “professional tidiness” on patients: any discussion about the end of life need to be very patient-centred, and if the patient’s preference is for silence we need to respect that. We know that the communication challenges are pretty formidable and health care professionals fear raising some of these issues, they fear raising them prematurely and they fear destroying hope. There is a recognition that when patients want to discuss these issues that we need to talk more openly, but if the patient does not want to talk this must be respected. In medical and nursing training here there is a heavy focus on communication skills nowadays.
The NHS End of Life Care Strategy is encouraging the use of three “End of Life Care tools”: Gold Standards Framework, Liverpool Care Pathway for the dying and Preferred Priorities for Care.
8. At a time of public sector restraint, will there be cost savings to the public purse in bringing together research and care in this way and will it be sustained?
In terms of the public sector cut backs, there is a real potential for a win - win situation. There may be End of Life admissions that could be avoided by the development of further services in the community (such as the hospice at home service): saving around £3,000 for every one of these admissions. We would be giving people the care they want in the place they want (at home) and reducing hospital costs: a win-win.
We know that most people would prefer to remain at home until the end of life, but that many are admitted to hospital close to the End of Life. We have two CLAHRC projects underway concerning admissions near the end of life. One is a big study of national data, the second a smaller more local qualitative study. We will be investigating the extent to which these admissions are “avoidable” or “inappropriate” as they are sometimes described.
9. Are there dangers in not admitting people to hospital at the End of Life?
There is a need for careful decision-making by clinicians here. There is a concern that that too much focus on End of Life Care at home might mean that we will be denying people admissions to hospital when those admissions are entirely appropriate and may enable people to recover and return home. Particularly for the elderly in care homes and nursing homes, it can at times be a difficult clinical judgement whether to admit someone to hospital in the hope of their recovery, or whether such an admission will end in death in hospital, which some see as a failure of End of Life Care. As a clinician making such decisions myself, I know how very difficult they can be: it is easy to be wise after the event!
In our recent study of end of life care in five Care Homes, we found that five times as many residents of these Care Homes were admitted as emergencies to hospitals and came back to the Care Homes than were admitted as emergencies and died in hospital. If there is a pressure not to admit frail elderly people from Care Homes, they may be being denied the care they really need. We have to tread carefully here.
9. Will it involve new training for professionals in this field, how will you tell people about your work?
A government programme initiated by Lord Darzi called “Health Innovation and Education Clusters”, is helping to strengthen the co-ordination of education and training across many different speciality areas. I am responsible for the End of Life Care strand in Cambridgeshire, which is currently undertaking an extensive education programme in hospitals, GP practices and care home across the County. We want to look after more people in the community and if we are to do that we need to educate the workforce and we are doing that in this multi-pronged education initiative.
10. Is the process “ongoing” in the sense that lessons will be learnt about End of Life Care as you learn more about taking the benefits of research into care delivery?
Yes. However there is increasing pressure on hospital resources in a time of national financial pressures: it is getting more difficult to find time for the training of staff in End of Life Care. Frequently this has to be done in their own time.
When we are caring for people with non-cancer illnesses, you are often dealing with multiple illnesses and the complexity of this is going to be greater as the population gets older. There will be an increasing number of people with dementia needing End of Life Care as well. It is important for health care professionals to keep learning about the latest developments in care and to know what our research has shown.
11. Do most people die at home?
The trends in place of death are not looking favourable. Most people do not die at home, but Cambridgeshire has one of the highest proportion of people dying at home of any area in the country: this is in part related to social affluence, for instance, South Cambridgeshire is one of the highest areas of home death and one of the wealthiest areas in the country.
I think one possible key to delivering good End of Life care is not to labour excessively to identify a group of people who are approaching the End of Life, but more to incorporate it into the management of chronic disease. “Hoping for the best but planning for the worst” is what we call it. So we hope to get the elderly lady with a chest infection home from the hospital, but if not, maybe she is approaching the end of life?
12. Is death a medical failure or can it be managed comfortably and well?
We need to mainstream the End of Life Care. The Hospice movement was initially largely charitably funded but it is now becoming more mainstream NHS funded. We need to acknowledge that death is not a failure. There comes a time to recognise that life is reaching its natural end. It is part of my job as a doctor to help people to reach that natural end as comfortably with whom they want to be and where they want to be as much as possible. Just as we help people to be born safely we need to help them to die comfortably too.
13. Is there one change that you would like to see taken into End of Life public policy implementation in the next twelve months and why?
There needs to be an increasing recognition that you can invest to save. If you invest in community services to support people at home you are saving the health economy in the long term. But you can’t do that without giving health care professionals the resources to do this with an initial investment in community services.
End.