Extract from Hansard [COUNCIL —Thursday, 27 September 2012]
HON NICK GOIRAN (South Metropolitan) — without notice: I move —
That this Council —
(a) congratulates the state government for its commitment to expand palliative care services throughout Western Australia, especially through the additional funding of $14 million provided through the Palliative Care Services Fund from 2009–2012 for projects including establishing —
(i) rural palliative care across seven Western Australian country health service regions;
(ii) two mobile specialist palliative care consultancy teams in the metropolitan area; and
(iii) a statewide paediatrics palliative care program under the auspices of Princess Margaret Hospital;
(b) noting that dignity therapy is a psychological tool which helps health care providers to affirm the personhood and dignity of the patient and costs about $500 per patient, calls on the state government to consider ways of ensuring that the funding of palliative care in Western Australia includes funding for dignity therapy; and
(c) encourages the state government to continue to expand its support for palliative care to ensure that—
(i) palliative care is given higher priority in educational programs, including continuing education programs, for doctors, nurses and other health professionals;
(ii) palliative care is better integrated as an essential part of all health services throughout Western Australia; and
(iii) appropriate palliative care is available for persons with chronic diseases as well as those with cancer and other terminal conditions.
Some of my colleagues thought my speech would end once I had concluded moving the motion! However, I would like to make a number of other remarks in support of the motion. I will start by making the remark that in my view, on the whole, Western Australia has a very good palliative care model and service delivery. I congratulate Minister Hames, the Minister for Health, and the Department of Health for their commitment to palliative care. I think, as members and constituents, we are very blessed to live in a state where life is valued and the palliative care we offer is sophisticated and the importance and value of quality palliative care is recognised. However, I note that with the population aging and as baby boomers hit retirement, palliative care will continue to face an increasing demand. It is my keen desire to see that any gaps that exist in the palliative care system are filled so that people are held and borne at the end of their life so that death, dying and bereavement are seen as a natural part of life.
I want to quote an article from The Lancet of 30 May 2009 titled “Dying and choosing”. It is to do with the challenge of keeping pace with demand. I quote as follows —
Along with other … advances in clinical practice, palliative care has come of age, with specialist palliative care teams in major hospitals and in hospices. Sadly, stories of “bad deaths” have not disappeared, largely because the spread of palliative care skills, both geographically and within health care, has not kept pace with its advances in quality.
I turn to the situation of modern-day palliative care. I note that the past two decades have transformed the situation for dying patients. Modern-day palliative care is about more than just relieving pain and other symptoms that cause suffering; it seeks to get to the bottom of what is causing distress—whether it be psychological, physiological or spiritual—to empower patients to receive care how and where they wish and generally to restore quality to their last months, weeks or days.
The calls that have been made around the globe for doctor-prescribed suicide are linked with ideas of unrelieved suffering, intractable pain and the fear of the unknown. The language used by the proponents of those calls is generally emotive and descriptive, but not necessarily an accurate reflection on the reality of the dying experience in today’s Western Australia. It is ironic, I think, that improvements to care for the dying around the world have also been accompanied by increasing calls for legislative change. We have to consider why this is the case. Some would argue that in the West we try to sanitise anything unpleasant and that the natural processes of life such as birth, breastfeeding and dying are shut away behind closed doors so that they are no longer recognised as natural but are seen as unnatural and to be feared.
Alternatively, perhaps we are not educated enough on what death and dying are really about. I have to say that I found myself in that category prior to being sworn in as a member of this house. I am therefore thankful for the likes of Dr Margherita Nicoletti and her team at St John of God Health Care Murdoch Community Hospice in my electorate. I have had the opportunity to go and see them at their facility and to talk to the staff and their patients and families. The experience I had there two years ago, I have to say, is one of the highlights of my time here in Parliament because it gave me an authentic glimpse at the journey that is as difficult as it is valuable, and as sad as it is rich. I saw many tributes from families and friends expressing the comfort that they had received. During my visit I saw people, some with ailing bodies and some with battered hearts, coming alongside one another—encouraging, supporting and learning from those whose days were, medically speaking, numbered. In speaking to people, I learnt that they could not speak highly enough of the dignity and quality of care that they were given. The time I spent at Murdoch hospice gave me a greater appreciation for life, for family and for what is really important; it also removed some of my own fear of things unknown.
I remember hearing a story of a pregnant woman in the 1950s who had no idea of what to expect in childbirth. She had not been informed or educated on what to expect during labour and childbirth. What she experienced so shocked and traumatised her that she only ever had one child, as she never wanted to go through the experience again. That was in the 1950s. Fortunately, things have come a long way since then. And of course in the area of childbirth, expectant mothers are offered services, clinics and antenatal classes that give them an idea of what to expect. They can be offered support to help them through what is undeniably a difficult and at times frightening experience. This is a prime example of how education can serve, in my view, to remove fear of the unknown.
Part of my motion this morning discusses this new initiative of dignity therapy. During my career as a legal practitioner I had the opportunity to talk to many people who, after a tragic accident, were suffering emotionally and also mentally in coming to terms with the life-changing situation they faced. I would often, in arguing the case for a victim, cite an overlying mental health issue, which is part of the natural grieving process for the life that once was and the life that now is.
Earlier this year I was informed that Professor Harvey Chochinov would be coming to Western Australia. Professor Chochinov is an internationally recognised leader in palliative care research. He is Professor of Psychiatry, Community Health Sciences and Family Medicine of the Division of Palliative Care of the University of Manitoba; he is director of the Manitoba palliative care research unit, which is called CancerCare Manitoba; he holds the only Canadian research chair in palliative care; he is a recipient of the Queen’s Golden Jubilee Medal; and he has received the Order of Manitoba for his work in palliative care. Professor Chochinov is also known as the founder of this new intervention called dignity therapy.
Some members might want to know what dignity therapy is. It is a therapeutic intervention that can help people with a life-altering or terminal illness cope with what has happened and what will happen to them. It is an aspect of palliative care that is of great interest to me, and so I invited Professor Chochinov to come to Parliament to educate me and many of our interested colleagues on dignity therapy. Those members who went to that briefing will recall that Professor Chochinov explained that the will to live is not a dichotomy. That is, it is not a case of having it or not having it; rather, it can fluctuate. In one study that was mentioned the reason given in 57 per cent of cases for a medical decision to end life was loss of dignity. Dignity intimacies are things such as bathing, dressing and incontinence. Dignity is about how people perceive themselves to be seen. Many patients hold onto past images or perceptions of themselves. It is important for them to be seen as these people, rather than to be seen just as sick people.
During illness, personhood can start to vanish. It can start with something as simple as keeping people waiting. They might say that they do not feel important enough for the doctor to attend to them on time, and can end with people feeling that their self has been lost and that they have become their illness. Generativity is the belief that one’s life has not had meaning and involves feelings such as, “I am leaving no legacy, no impact; I won’t be remembered.” These are huge concerns for people with a terminal illness. Dignity therapy is a psychological tool that can help healthcare providers to affirm personhood. It involves a discussion with the patient about their life and what message they may want to pass on to their loved ones. I think the benefits are improved wellbeing of the patient and there is also a multigenerational impact, as it can be of great use to the family of the patient.
There is always the global problem of the limitations of budgets. That is not anything we can escape from. It is just a reality that there is a limited financial pool from which to address any initiative. Often this leads to unconscionable requirements being placed on what elderly people must put up with. In palliative care there is a different bottom line. The cheapest option is if the patient dies. The question is how do we measure the cost of a good death and how do we put a price tag on the mental health of grieving loved ones and family members.
From what I have understood and researched to date, dignity therapy is far cheaper than any biological medicine involved in palliative care and opens up the conversation surrounding dying. If we were to take this up, we are being offered a way to conserve people’s dignity, to protect humans and to develop compassion and mercy in the individual. In my view, if we turn human suffering into something that we will not tolerate it makes us less sensitive to the pain of others. Suffering people deserve compassion but their suffering affirms life.
In conclusion, I congratulate our government on its initiative and compassion in this area, and I encourage that to continue and to be brought to the next level. I would also like to take the time to thank Dr Andrew Dean, medical oncologist and palliative care physician; Professor Paul Skerrit; Dr Joseph Parkinson; Dr Margherita Nicoletti and Tish Morrison, who are both at St John of God Murdoch Community Hospice; Mrs Helen Walker from the Department of Health; Samar Aoun and Jo Hale from the Western Australian Centre for Cancer and Palliative Care; Steven Carmody and Mark Cockayne from Silver Chain WA; Will Hallahan, the executive officer of Palliative Care WA; Mr Dale Henshaw; and all of the people who have helped me over the last three years to better understand this topic and, in particular, the issue of death, dying and palliative care.