An Interview with Mary Schumacher

What do you see as some of the advantages of the growth and maturity of the hospice in New Zealand? What are some of the challenges facing hospice care?

Some of the benefits are that the whole philosophy and concept of hospice is well accepted and we have become more mainstream now and seen as a viable option. However the hospice movement in New Zealand is at a stage where we really need to look at where we are going. If you look back it would be fair to say that the hospice has been a little inward looking because any new movement is. Any new movement is about getting yourself off the ground and established. In these circumstances you are necessarily fighting against the world, aren't you? You have the passion and the drive of the people who set you up and the founders of the hospice movement and then we moved on because of the real challenges around becoming professional while retaining the core values and philosophy of hospice.

If you are thinking about the core values and philosophy and we look back I think we've been in some part elitist and hospice has been for the lucky few so right now the biggest challenge is ensuring that hospice is available and that the philosophy or the care is available for everyone. I think it's a bit of a cliché but we've provided a "Rolls Royce" service for the relatively lucky few - now the challenge is to make our services more readily available. For example, what about people with dementia? We know that they are not getting palliative care and they may well need it when their life is ending. What about people with mental health issues? What I want to say is that now is the time to broaden our approach. In the past hospice was particularly for people who had cancer and we'd say, "lucky you", if you had cancer, because you could have access to all these services. On the other hand patients with end stage organ failure, or those with age-related illnesses including dementia, wouldn't necessarily have had access to palliative care.

While I am making a distinction between palliative care and hospice I am actually talking about the same reality. The time has come for us to look at the width and the breadth of our service which means taking the philosophy out and saying irrespective of where you are - being at home, being in hospital, or being in an aged care facility - everyone should have access to palliative and hospice care.

What are the particular challenges and/or difficulties of extending the philosophy of hospice care?

Most obviously there is the financial challenge. The challenge of finding adequate funding is a constant. Currently the government provides 50% of funding for hospice. The wonderful thing about the hospice movement has been the incredible support by the community and the sense of ownership by the community for the hospice and that is right across the country. We don't ever want to lose this wonderful community support and sense of ownership. By the same token I think it does need to be increased and, in fact, we need to broaden our approach.

The other challenge is the letting go. While this might sound provocative, we are not the only ones who can care for people who are dying. Aged care facilities do it day in day out, beautifully, but with very little resources and with very little support. People care for people in their own homes, families care for people in their own homes. We should be supporting those people – not taking over, but actually giving them the information, giving them the skills, giving them the support and actually the confidence because we can tend to monopolize death and dying a bit. Funny isn't it? We have gone the full circle - we do a fantastic job and I really would like to see the philosophy and the skills we have shared so that everyone can have access.

In many aged care facilities there are the "Cinderella's" who do not have access to this sort of care or philosophy and who do not pay big wages and consequently the care of the dying is done by nurse aides. How might hospice assist?

Hospice is starting to help that already. We are starting to see exactly that people in aged care facilities are the "poor cousins", they are the "Cinderella's" and that is not ok any more. We have a responsibility as hospices who are providing specialist care. Where we want to go in a philosophical and directional way is to take that knowledge and to support aged-care facilities with training and education – taking it to them, we know that if we just run courses while sitting in the hospice it is not going to work. What we need to do is provide the support into these facilities and it is definitely not about taking over because we cannot care for everybody, hospices cannot.

I think we can share that philosophy. More and more hospices see this as an integral part of their role and they are going out and working in communities and they are working in the aged-care sector and working alongside general practitioners, perhaps nurses and Iwi providers. Essentially this is a way of saying, "you best know the people you are caring for, we can offer you a back up support and when you need us, we are here, and if you need our specialist services, you are doing a great job of doing the day to day caring – we can help." That approach is quite different isn't it?

The operational goals of the hospice movement included: the patient-family as the focus of care; viewing the patient holistically; and, providing education back into the community. These goals were foundational and they are still very much in evidence today.

That's so true, that's exactly where we are at. Education is about the other core value of the hospice movement which is the whole person. This means focusing on the physical pain looking at the whole person, the needs of the person and their families and recognizing that suffering is broader than just physical pain. It includes spiritual pain. Education also means sharing that information so that the people who are doing the day to day caring will start to recognise the whole person.

Allied to that, what are some of the workforce challenges at the moment?

I think they are huge. The principal workforce challenge is attracting and retaining qualified staff. Then there is the challenge of their training, their professional and personal development. The work is demanding so it's how can we have a really well equipped, flexible, and responsive work force that can meet the challenges, and there are more and more challenges. The nature of palliative care or palliative medicine is changing. The boundaries between curative treatment and palliative care or active treatment and palliative treatment are not as clear cut anymore. You don't just go from being in treatment to palliative care, now you're having palliative chemotherapy and palliative radiotherapy, so all the treatment barriers are blurring. The skills that are required technically are changing and whether or not we should be involved in all these aspects of care is up for discussion and debate.

Our relationships also provide us with critical challenges, for example, how we relate to our colleagues in the public system and in the community, the health professional team in the community. We require really good skills around communication and working in teams, coordinating and sharing information - so there's a challenge around that. And there is absolutely a shortage of palliative care specialists, medical specialists.

In nursing how do we offer career pathways? Given the challenge of what professional nursing looks like now, how do hospices keep up in terms of payment, in terms of salaries and in terms of offering really good practice development opportunities? Because the face of nursing is changing we need to keep up. Allied health is growing in the hospice movement now. We've always said we are on about the whole person. For example, how do we really value and support the spiritual carers and chaplains, the social work counselors, the occupational therapists and volunteers? The whole face of volunteering has changed. Volunteers have high expectations now. They give a lot and they expect to be treated as contributing members of the team. How do you train them? How do you support them?

Then there is a huge demand around actually managing these very complex organisations – where is the leadership? How do we support our leaders in hospices? It's a pretty tough environment, you're a fundraiser, and you have to work with Government, with District Health Boards, health professionals, volunteers, complex organisations and the community – all of whom who have high expectations because we have created high expectations. So there are real challenges around the leadership and the whole challenge between the relationship of professionals and management. There are a lot of challenges and hospices are experiencing them now as we speak.

Could we touch on the question of referral and self-referral? I think of some of the more celebrated cases recently in New Zealand that have caught the public media. Often at the heart of them is a cry for help that, rightly or wrongly, has gone unnoticed and unacknowledged.

I think we have touched on it already. If a hospice is involved have we got adequately trained staff that can pick up on, and who are able to accurately assess people who are in trouble? We must have a standard of care across the country. I think that's really important. If a family aren't linked into a hospice and aren't receiving specialist palliative care we need to change how we deliver our services because I think everyone has the right to access to quality palliative care. I do believe that we know that hospices and palliative care cannot alleviate all suffering but I'm convinced if people had access to quality palliative care by the team their suffering could be reduced significantly. I am talking about suffering in its broadest sense and I would hope that people wouldn't get to the stage where they were so desperate. I know that they still will and that people will still make choices but I would like to feel that all people have had access to, and been offered, the full range of end of life care.

The cases you refer to are incredibly sad to me and for those families it must have been desperate for them and for the person who was dying it must have been desperate to feel that they are suffering and in pain and that there's no way out except assisted suicide.

Could you talk about the dedicated palliative care teams now working in hospitals and liaising with hospice? While they are doing wonderful work we are still seeing terminally ill patients in large metropolitan hospitals dying in Accident and Emergency Departments. Some of these had been there for up to three to four days because of a shortage of nurses or beds in the wards.

It's tragic isn't it? And it makes you wonder just how far we have come. I know about someone recently who died in hospital and the physician said, "we don't think you need palliative care. We would refer you to palliative care if you're going home or if you're going to a hospice but when you're in a hospital you don't really need palliative care." This person died in a hospital, died in discomfort and pain and with a lot of suffering and a lot of it was simply unnecessary. You talk about the hospice movement being really mature but clearly we have a way to go.

Ironically that same hospital has a very good palliative care team just starting up - it couldn't be better. There is so much work to be done and that's why to me it is crucial that people, irrespective of where they are, have access to quality care. Something does have to change. It's not ok for terminally ill people to be dying in the Emergency Department. It's not ok for them and its not ok for their families and I think we need a nationally coordinated approach to ensuring that end of life care has some standards that everyone has access to irrespective of where they are. The hospice movement needs to be supportive of that and we don't have to be afraid of that because it's not taking away from us. We have a role, a really important role and we need to be embracing and working together with our colleagues in the hospitals. We also need to be embracing and working together with our colleagues in the community.

You are talking about advocacy for the terminally ill?

Absolutely - irrespective of where they are. We don't need to have all these patients in our services but we do need to ensure that health professionals in most settings are able to provide a level of care that is acceptable. There is no way hospices can care for everyone who is dying. About a third of the people dying in New Zealand die in the public hospitals. We know that some hospitals have a very effective palliative care team and some don't. Only a small number die in rest homes and most New Zealanders die at home. We need to make sure that they die in a way that is with dignity no matter where they are.

A lot of palliative care teams have nursing and medical personnel and that's really important but they lack the psycho/social/spiritual side to give breadth and depth to the team. I think that is also one of the key challenges and the hospice movement does not have to be afraid of this challenge. We don't have to hold on tightly, we can be very clear about where we come from. We do not have to dilute where we come from and neither do we have to dilute our core values and philosophy. Rather we have to embrace these new and wider challenges.

Are there any other issues that you would like to comment upon?

We have talked about workforce, we have talked about funding. I wonder if it is about values and I wonder if it's having a robust debate about some of the ethics in terms of what we are doing, in terms of where does palliative care start and end. One of the issues we know is clinically futile treatment – where is our role in that debate?

I think we have to be very careful that we don't over medicalise death and dying. We have done that with birth. If we aren't careful we could over medicalise death and dying rather than seeing it anymore as a normal stage of life. The hospice movement also has to be very careful that we don't monopolise and take over all the rituals and customs around death and dying because families used to be able to manage death and dying beautifully as did their communities. So while we have managed death and dying really beautifully in hospice and while science and medicine has developed there is still need for caution and sensitivity in how we care for the dying patient and his or her family.

Does New Zealand society accept death? We have the tragic and the violent death on television but that's the exception isn't it?

No, I don't think we do. I think we are a death defiant society aren't we really? We still don't like to talk about it or face it. Certainly in terms of the spiritual and the emotional perspectives I wonder how comfortable we are in addressing those issues with people. It's just not in our New Zealand psyche is it? We don't go there. We are not really that sort of people but it is important that we have some sort of discussion and as a country we start debating that.

Recently there has been a lot of talk about Advanced Care Directives and that is a good thing because people want to be really clear about what it is they want. We have got younger people dying who have a lot of information and they are quite clear about what they want in terms of their care and what happens afterwards. Then we have older patients who still don't particularly want to go there either. Ironically they die quite "differently" because they do not particularly want too much information possibly because they are very much in awe of the doctor.

Your insights on hospice and the challenges it faces - the big picture – are exceptional and very refreshing.

My role is to challenge and hospice has to be relevant. We have an advocacy role and a shepherding role. We have to say something about who we care for, about who we work alongside with and about how we manage and lead these organizations. In all these areas there is a real risk for hospices of being left behind.

So that the hospice philosophy is subverted in some kind of a way or becomes quite elite or too watered down?

Exactly! I think you can have a core philosophy and values alongside running really professional organisations. I don't think that they are exclusive. I know some people have been concerned and said that hospices have become too professionalised and the cry always is where is the heart, where is the caring? I think you can be very professional and have a very strong heart.

Hospice is much more than just pain and symptom control. Another current challenge and debate centres on the question of what we are. Are we hospice? Are we palliative care services? Are we hospice palliative care services? There is a huge debate going on about that right now. That is probably one of the key things happening nationally. I believe hospice is who we are and palliative care is what we do.

So hospice is the philosophy and palliative care is how you deliver it?

We do not have the monopoly on palliative care because we have various palliative care teams in hospitals as we have discussed earlier but hospice is the core, the values, the philosophy and that is something we do have to cherish and hold on to. However this is not an excuse to remain exclusive, inward looking and elitist because that is completely contrary to hospice philosophy. Hospice philosophy is about being inclusive and welcoming and about providing a resting place for all not just for the patient suffering from cancer.

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Mary Schumacher was interviewed by Rev Michael McCabe, Director of The Nathaniel Centre