Wednesday, May 8, 2013

Consumer perspective on end of life care

Good morning and thank you for asking me to talk from a consumer perspective on this important subject.

My interest in this topic first arose from the death of my parents.

My father was in his 80s when he was admitted to a nursing home, or should I say it's modern correct name, a Residential Aged Care Facility, with dementia. He had a heart attack about one year after he had been in the nursing home. They rushed him up to the local hospital where he was admitted to the coronary care ward. Unfortunately, because of his dementia he could not remember where he was and kept pulling out the IV and the other attachments to his body.  After that disastrous episode, we, his family, got the message across that he was not for transfer to acute care and he died a year later from pneumonia.

My mother died following a stroke.  My mother was petrified of having a stroke and being incapacitated in a nursing home as had happened with a friend of hers.  So when the doctors in the stroke ward told me that my mother’s latest stroke was very serious and that the scans showed that she had extensive brain damage, I advised them that she wanted palliative care only, which was agreed. So I was astounded the next day to arrive and find that my unconscious mother was receiving intravenous fluids.  They informed me this was “palliative” and who was I to argue although I did think it was odd.  Anyway, after 3 days, my mother woke up and she had such major cognitive damage, that she was not eligible for rehab and we organized for admission to an aged care facility where she died 6 months later.

I have since learned from the palliative care people here in the ACT, and from a wonderful Alzheimer’s Australia publication by Prof Colleen Cartwright on end of life care that you do not need fluids as part of the dying process and that, to quote Prof Cartwright:


“To continue artificial nutrition and hydration when the person has reached this stage of their illness (i.e. dying) can actually increase their suffering”

And certainly, this is what happened with my mother – her suffering was increased by their artificial hydration but the stroke ward specialists were not around to see the consequences of their actions.

These experiences of my parent’s deaths greatly increased my interest in what we now label as futile care, that is, treatment that will not improve the outcome, such as leading to a decent recovery.  Also, because I have a reasonable chance of ending up with dementia in my 80s as did my father and his mother, I do not want futile care to prolong that experience.

As an active member of the community and as one who mixes with lots of older people through our older people organisations, I became very interested in the worry about the coming “silver tsunami” for health care from the baby boomers reaching old age.  For me, it is not only this demographic which is increasing the health bill but it is also now how we practice medicine on people who are clearly dying.  Over the last 1-2 decades, longevity has increased – the average age of death is now in our 80s whereas it was previously in our 70s, yet our quality of life in the last decade of our lives has decreased.  

So, I became an advocate for advanced care planning and I became the consumer representative on the ACT Respecting Patient Choices committee.  Then, a few years ago, when Professor Ken Hillman’s book Vital Signs came out, I was fascinated with what I learned.  I was particularly interested in his argument about how we are wasting money on “futile care” (although this is not a term used by Hillman in his book).

I am also interested in Hillman’s reports about useless, high technology care in hospitals at end of life resulting in some horrible deaths in intensive care. And that the money spent on dying in hospitals could be better spent on good community care and that these decisions about the better use of the health dollar cannot be made by politicians or health bureaucrats but are the responsibility of clinicians and community. This is why the forum today is so important. We want you to share your views on this important topic so that the ACT Government has a clear view on how health care could be practiced better at end of life in the ACT.

So, what are the tools available for improving end of life care and what are the barriers to moving from acute care focused on curing and saving us, to palliative care at end of life?This afternoon we will address these types of questions. So, I would like to share some thoughts about the tools and barriers.

First – tools for consumers.  As many of you know who are here today, advanced care planning tools are a good method for retaining some control of our end of life experiences.  Yet very few people express their wishes for their end of life treatment by completing an advanced care plan.

Over 500 people died in Canberra Hospital last year, but only a small minority would have had an advanced care plan. Why? The answers are complicated.

This afternoon we will explore how we could improve the uptake of advance care planning and the barriers for us consumers, for people with no medical training.

For clinicians, the questions relate to the barriers for moving from acute/curative care to palliative care at end of life?

I know this is a question that interests Peter Saul who is here with us today.  I heard him interviewed on the radio earlier this yr with a palliative care specialist who spoke about cancer treatment and noted that haematologists were the worst at addressing the inevitability of death with their patients. It seems that for most haematologist/oncologists, the focus is cure and it is defeatist to talk about the option of dying.

This reminded me of some consumer stories of dying in the ACT. Mark’s (a pseudomen)  story follows with some details changed to protect privacy.

Mark had to make some decisions when his secondary cancer treatment failed. He and his family discussed changing their oncologist/haematologist but did not. Hard thing to do – change doctors.

The result – Mark went on a number of trials (under the banner of we can still fight this cancer) which had some horrible side effects, such as a colostomy and other things, and eventually was in Intensive Care almost unconscious where his specialist did not even pay enough attention to realize the extent of Meg’s incapacity at this stage.  Fortunately, the weekend came, and an another haematologist came on duty.  He was shocked at Mark’s condition and discussed with Mark’s family the option of moving to palliative care.   This was agreed and organized but on Monday, when Mark’s regular specialist came back, he disagreed and said to Mark’s wife “we can still fight this”.  Fortunately, Mark’s wife was empowered enough to refuse the specialist’s proposals, and Mark was moved to Clare Holland house and died a few days later.

This raises the issue/problem of hospital culture where “death is seen as failure of treatment”.  At the ACT Clinical Senate earlier this year leading ACT clinicians considered this topic of “Futile care”.  There was no disagreement in the room. There was strong consensus that there is lots of futile care in hospitals and that there is a dominant culture among hospital clinicians where “death is seen as failure of treatment”.

But what is futile and who decides?  This brings us to the topic of information for consumers and education and support for clinicians.

I know sharing bad news/information with families is not easy and requires time and skill.  I experienced this with my mother’s stroke.  My siblings found it hard to believe that my mother was so badly damaged that she would not be eligible for rehab and argued “we will fight for her”.  Only after my sister observed my mother struggling and failing an assessment that she had easily passed after her first mild stroke did my siblings and their families accept the bad news that they wanted to reject the previous weekend.

Similarly, most hospital doctors tell you a story of a relative, generally a son, insisting “everything possible should be done” to save their parent.  Just such a case is discussed this year in the March Medical Journal of Australia where a 63 yr old man, named John, with end stage cancer and recently diagnosed pneumonia, has a son who objects to the medical decision to move to palliative care.  This edition of the journal is devoted to the discussion of futile care, ethics and patient autonomy – a very pertinent, timely topic.

Which brings me to my conclusion:  

My congratulations to the Local Hospital Network Council for addressing this important issue.  It is a thorny topic which has the potential to provide better end of life care more efficiently, allowing us to use our scarce health dollars more effectively and for consumers and our families to experience a good death.

A plea to clinicians to talk to patients about dying when necessary (I know it takes time) but it is worth it and saves time in the long run and has a greater chance of reducing futile care and improving end of life care. Information is power for patients and families and we trust health professionals to provide us with information and help us to understand our options. Don’t be scared to give a diagnosis of death.  Facing the inevitability of death is difficult for both consumers and many clinicians – but we need to do it better.

Improving the system will involve all of us, - consumers, citizens, clinicians and policy makers to think about the systems and tools we need to improve end of life care.

Adele Stevens PhD
Vice President

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