Hospice New Zealand ConferenceHealth
Michael Fowler Centre, Wellington
Good morning. Thank you for the invitation to open your conference.
It is an honour and a challenge to be addressing you. The honour comes from the quality of the work you do and the motivation behind it: so does the challenge. Your presence challenges all of us working in health and disability support.
It's very easy to say hospices do good work, and commend them upon it. What is far more interesting, and valuable, is to examine the elements of that work.
Today I'd like to look at how you challenge us. What are the features of your service from which Government agencies and other health providers can learn?
Then I want to look at where hospice care will fit in the future development of funding, and if I may I want to make particular reference to care of older people acknowledging that you care for all ages.
Finally I want to comment on how the hospice movement has and will influence the ethical debate around care of the dying.
What we can all learn from the hospice movement stems from its fundamental rationale. That is the commitment to putting the patient and their family or whanau at the centre. This emphasis on the individual and their total experience first fired up the hospice movement, and still does. Part of that spirit is to acknowledge all pain, not just the physical, and not just the patient's. Another part of that spirit is to take your mission seriously and ensure it defines the way you organise yourselves.
I've talked quite a lot over the last year or so about my "four principles", and I think it's worth reiterating them here because they are applicable to the hospice movement. These principles are simply common sense dragged together into a few simple lines. They are about better service providing better care.
The first principle is organising services around the patient. Which you do. You go out to support people in their homes, if that is what they and their families want. You care for them in the hospice if that is what is wanted. Too often we expect people to find their way around bits of service defined by all sorts of things other than the persons needs.
To do that the second organisational principle is needed - to develop better relationships between all carers. Hospices do work hard at recognising the value in the variety of carers. You welcome volunteers, you work hard to develop a team of professionals who can each contribute to the clinical and personal needs of the person in your care. Your relationships with the others who have provided care to your patients will be at different stages of development, but they will have to develop further. Perhaps you can tell me how we can develop better relationships between hospice care and our public hospital care both in the hospital and in the community.
The third principle is "local solutions for local problems" and this is a strength of the hospice movement. There is a sense of local ownership, commitment and pride in local communities about their hospice services. You wouldn't have the volunteers, you wouldn't have the funds raised, you wouldn't have the lights on the remembrance trees, if people didn't strongly relate to the worth of your work in their community..
The fourth principle is that decisions about resources should be made as closely as possible to the individual need. The best decisions about hospice and palliative care will be made by people with control of the resources and immediate knowledge of the needs to be met.
So we can learn from your movement the strengths it has in exemplifying some of these common sense attributes.
Another area where mainstream health care could still learn much from you also comes directly from attending to the patients' needs first. It's that good care isn't always complex, and it isn't always chemical or technical.
People may need specialist skills, but they also want the simple things done well, things which show respect for their unique need and their vulnerability. These attributes are important to the 10,000 New Zealanders who write to me each year - each telling a heart felt story of their experience while in our care. It is the simple things like not having their test results lost, like having the effects of medication explained, like simply acknowledging and fostering their sense of control over their own lives.
I think it's fair to say that when patients move to palliative care, they can feel somehow that they are failures. The full gamut of medical science has been tried out on them, and they have failed because they didn't respond In fact the sense of failure probably goes both ways. Medicine hasn't helped them much either.
Hospice care changes that sense of failure, it changes the relationship between patient and medicine. It puts the patients back in control of what they want medicine to do for them. Sometimes it's very little. Sometimes the emotional, social and spiritual support is far more important.
That is something mainstream public health care often forgets. Sometimes we get carried away with the medical advances, and forget why they are there.
They are there for the patient, first.
I have a friend with an elderly mother in Southland. She has "turns" every now and again, goes into Kew Hospital for a bit of a rest and a sort-out, and then goes home again. Unfortunately she had one of her turns recently while on holiday up north, needed hospital treatment and was unlucky enough to be seen by a well qualified geriatrician. She was turned inside out and subjected to a all sorts of tests which told her she had much more wrong with her than she really wanted to know. The whole experience was highly distressing for her.
This story illustrates we should be thinking much harder about medical intervention, not for economic reasons, but for reasons of personal integrity. We do need our specialists but we must never forget each person's own perception of their illnesses. We've got to look at the whole person.
Because hospice services have developed outside the traditional medical model, from a community spirit and in a professionally neutral way, there is much that the mainline public health service can learn. I am optimistic that our public health services are open-minded enough to learn from others and I hope Hospice New Zealand will take the chance of better relationships for our mutual benefit.
Now I want to talk about funding and the future development of funding arrangements.. For hospice as for many others, the useful purpose of a Minister is the cheque writing capacity. Hospices deserve and receive public funding. The 1997-8 HFA funding was $12.4 million for palliative and hospice services. That doesn't include the palliative care funding for public hospitals in areas where there is no hospice.
Funding for palliative care has increased in recent years, though not for individual hospice organisations. The initial distribution of publicly funds for palliative care was very uneven and the emphasis in recent years has been to apply new funding where there was no palliative care before. I don't apologise for that. It is my job to pay attention to those who are missing out on a service altogether, who don't have the advantage of partially funded services to lobby for them.
Many of you are keen to see higher levels of public funding. This represents some challenges for you and for me. You face the challenge of moving from standing outside the mainstream public health system, to becoming part of it. Such a move means keeping the integrity of your vision while you move away from the community well spring of that vision. It also means entering a system where you have to acknowledging the needs of other people who provide caring services and their competing interests in funding.
Funding agencies have to be able to measure the value of services and thus balance competing desires for autonomy. This means receiving mainstream funding does require another layer of work on measuring, communicating and relationship building. The more public money you have, the more you have to balance your autonomy with others.
Government has to make choices about how we are going to spread of government-funded palliative care services throughout the country. The National Health Committee project on the Care of People who are Dying currently underway underscores the fact that many dying people do not receive an acceptable standard of palliative care.
Such a concern for and understanding of palliative medicine owes much to the work of the hospices.
Together we are developing a more sophisticated understanding of palliative care - its different levels and its integration with treatment services. In practice more and more palliative care will have to go on outside of hospices and will be carried out by other than hospice organisations, such as IPAs, Hospital and Health Service community services, and organisations specialising in care of the elderly, such as Presbyterian Support Services.
This process will be accelerated by changes to safety regulations concerning places such as hospitals and rest homes. The new legislation will focus on continually improving the quality of care in all its aspects. All providers will have generic obligations to ensure safety and quality.
For example, in care of the elderly, it is likely that levels of care will be defined, but the hospital and rest home definitions will disappear. Already people who are involved in care of the elderly can see this change will provide opportunities to offer a wider range of services which better reflect the continuum of needs demonstrated in older people.
In short, funding for palliative care is not going to be just an issue of funding for hospices, but also, for instance, care of the elderly and acute medical care. The question is where hospice care will fit into the continuum of care we aspire to organise around the needs of the person in our care. Who will be responsible for an older person with complex medical and palliative care needs, as they move from their home to the GP to supported care to hospital perhaps several times, to residential care to palliative care?
We have talked about how the hospice movement understands the limits of medical care. Unfortunately the political debate shows no such understanding. More and more sophisticated medical care uses up enormous amounts of money, some of which would enable you and I to solve the funding issues that are part and parcel of the day to day management of a hospice service. I understand you frustration that your service is not publicly funded to a greater extent. I look forward to the time when more serious and immediate needs are perceived to have been dealt with, so we can deal with yours.
That brings me to one final but crucial area I would like to move to now is the contribution the hospice movement has made to ethical debate. I invite you to challenge more openly the way in which acute medical needs dominate political debate and new funding, because the hospice movement has shown it has the credibility and profile to influence public debate.
I spent a lot of time lobbying against the euthanasia bill two years ago. The debate around euthanasia is one that deals with fundamental values.
The vehemence of this debate, both here and overseas, tells us that people are coming from very deeply held beliefs about human nature. I would hope both sides believe that human life is so valuable that all humans should be able to die with dignity.
However, I do strongly believe that euthanasia, in practice, would bring about exactly the opposite.
What the hospice movement has shown is that the dignity of death is related to the worth of your life. That is why Mary Potter Hospice, for example, talk about "making the most of life."
There are many dangers to euthanasia, and we need not go into them here. But perhaps the fundamental one is the way it shifts the focus from the worth of each life to the fear of death. That fear is often intensified by worries about being left alone in severe physical and emotional distress. Hospice care is an antidote to the fear of such neglect.
Another reason I opposed euthanasia legislation is that the law should always have as its presumption the preservation of life. Whatever decisions are made they should be subject to the test of a strong social and legal presumption against killing.
The advances of modern medicine require people to make decisions and choices that didn't use to be available That wouldn't be so complex if our expectations about medical care were not so confused as they must be in societies which value highly medical intervention for the dying at the same time as favouring active taking of the same life. This contradiction is perhaps more evident in Australia than in New Zealand.
Many politicians were helped greatly by the insights of the hospice movement during the euthanasia discussions. You deepened our understanding through your practical experience of compassion. The result was that legislation which would legalise euthanasia was comprehensively defeated.
The hospice movement may have ancient roots, but its current growth has very recent history. It has flourished directly in response to modern medical and technological developments.
Those modern developments had left many people feeling alienated and frightened, feeling that the medicine was far more important than they were.
I am not alone in seeing the hospice movement as a direct challenge to the medical system that appears at times to lose sight of the humanity and the humility of the person confronting their own mortality
That challenge has taught all of us working in health systems a great deal. Because it puts patients at the centre, it has taught us, among other things:
better ways of organising services, while still acknowledging the interdependence of all our health and disability services
to realise better care is about relationships first, and science second
and has deepened our understanding of the ethics of caring for the dying.
Now, finally, I think it's important to turn the question and the challenge around. How will you become contractually integrated but keep your vision.?
These are questions the funding issues I mentioned earlier bring out..
Will hospices expand their range of care? Will you remain centres of excellence and specialisation? Will that be somewhat apart from the mainstream? Will you actively develop your already strong emphasis on education?
How will you best continue to influence the rest of us?
Those are questions only you can answer. What I can say is it is important to bear in mind that there will be a lot of changes in health over the next five years, and beyond, under the label of integrated care. That will be particularly evident in the care of older people, where government will be looking increasingly for a continuum of care, rather than fragments which are hard to manage form a distance.
Your conference theme is an apt one, given these broadening dimensions of palliative care. I hope its challenging. There is a risk of complacency in a movement which has so much public support. In addressing your ethical concerns, stand in the shoes of those who die alone and unloved, who die from diseases we can prevent, neglect we can avoid and omissions we'd prefer to hide. You need my support for more resources. I need you support and your informed understanding for the hard work of progressing a better ethic of care for the dying in our public health service. Ethics isn't just about what will serve best your organisation and those you care for - its about everyone having the opportunity of the care you already provide.
I wish you well in your work over these three days.