TALKING ABOUT DEATH AND DYING – Why is it we don’t talk about the greatest inevitability in our lives? Why don’t we talk about death and dying? Today we hear from a professor of intensive care, who looks at why so many people end their lives in Intensive Care Units.
Intensive Care Units (ICU) were only just being established when I first became a specialist in 1981. They were small and intended for patients with life-threatening illnesses who could be supported for a few days to make a full recovery.
Admitted patients included sufferers of serious trauma or infections and those who had complex surgery, such as open-heart operations.
Thirty years later, the speciality has its own unique and legitimate place in medicine. Every large hospital has an ICU. I started with six beds in the early 1980s and have recently moved into a 60-bed unit.
The operating cost for each bed is over $1 million annually.
Their role has also changed. It’s now difficult to die peacefully in a hospital and an increasing number of our community will spend their last few days in an ICU. The change is not a conspiracy; it has just happened but it offers little benefit to anyone.
My grandfather died peacefully at home in 1959. It’s different now. If you become seriously ill, as most people do at the natural end of their life, urgent help is usually sought. An ambulance is called; you are transported to the emergency department where active resuscitation occurs.
This is a natural course of events as there may be a treatable component to the disease. Also, few people have advance care directives, which state their end-of-life wishes. And seriously ill people dying at home can be frightening for carers.
Futile care
Many of us will be put on this conveyor belt, eventually finding our way to an ICU. Along the way you’ll be cared for by professionals, such as general practitioners, ambulance personnel, and hospital clinicians.
Because medicine has become so specialised, they often won’t understand each other’s boundaries, so it’s more than likely that you’ll continue your journey, often ending up on a life-support machine for the last few days of your life.
Intensive care is seen as the natural place for the seriously ill. The challenge is to recognise whether it’s appropriate to sustain life with all the machines and drugs that we have in ICUs. Because we can do so much more these days, we often just reflexly do our utmost to save lives – that’s what doctors are trained to do.
Compounding the problem of futile care at the natural end of life is the fact that doctors, as a rule, don’t feel comfortable talking about death and dying. So small, incremental treatments are delivered, even in the face of almost certain futility.
Maybe it’s being “almost certain” that’s the issue, but it’s hard to be ever completely certain in medicine. And so patients are transferred to ICU, put on life support machines and more incremental therapies follow, with everyone hoping for a miracle.
Eventually, it becomes obvious the patient won’t survive despite all the machines. Discussions with families begin, usually a consensus is reached and treatment is withdrawn. The patient is finally allowed to die in peace.
Around 70% of Australians would like to die at home but over half will eventually die undignified and painful deaths in hospitals.
Reality and expectations
Intensive care specialists have had to be increasingly involved in the dying process. It wasn’t what attracted most of us to the specialty. We still gain a lot of our professional satisfaction from saving lives.
But we also have a responsibility to engage our colleagues and society in discussions about unrealistic expectations of what modern medicine can, and more importantly, cannot achieve.
Hardly a day goes by without reports in the media about the latest miracle drug or procedure. Most television dramas emphasise great diagnosticians and cures against all odds.
One study showed that most patients who have a cardiac arrest in hospital television dramas live. But the reality is that most die and resuscitation shouldn’t have even commenced.
In response, we can open up discussions by being honest about the limitations of modern medicine. These discussions may lead to greater acceptance of dying and death.
There also has to be a different emphasis in health professional education. Obviously, successfully treating disease is the major goal of medical and nursing education. But managing the dying process is an important part of that goal.
When people with a terminal illness are asked what they think is important, they identify adequate pain and symptom relief; avoiding inappropriate prolongation of dying; achieving a sense of control; avoiding being a burden; and strengthening relationships with their loved ones.
A different approach
An important part of a different approach to end of life care is to provide alternatives to hospital admission.
I recently visited my sister-in-law, Denise, who lives in Oregon. She’s in the terminal stages of motor neurone disease: a cruel condition where muscles gradually become paralysed until the diaphragm becomes involved and you can no longer breathe.
All of this occurs without any involvement of the brain, so the patient is totally aware of the increasing weakness and dependence on others for most functions.
As part of medical care in the United States, you can opt for what is known as hospice care. The word hospice refers to a program, not a site of care. The government-funded Medicare program covers all costs.
The catch is that you must forgo any options for active treatment of the terminal disease, such as chemotherapy. That’s fine for Denise because there’s no specific treatment for the disease and she doesn’t want to spend the last few weeks or months of her life with a tracheostomy and on a ventilator.
The health system in the United States is far from perfect, being the most expensive and low on the list of measured health outcomes. But the hospice care that Denise is now receiving must be one of the more appropriate ways of managing people at the end of their life.
She remains under the care of her general practitioner. Since her wish is to remain at home, a palliative care nurse co-ordinates care and is on call and available 24 hours a day. A social worker, physiotherapist, occupational therapist initially assessed her and now visit as needed.
Someone comes three times a week to bathe her and provide about four hours of respite from care for her husband, Paul. Denise can be admitted to the local hospital for five days of care if Paul needs more respite. There’s no limit on how many times this can occur.
A masseur and music therapist are also available. As are drugs for the relief of pain and other distressing symptoms. The co-ordinating nurse gives comprehensive instructions on their use to both Denise and Paul.
A happier ending?
An interesting finding from one study showed that hospice care combined with the option for active treatment resulted in greater survival and less suffering than for active management alone. The conclusion was, that given the choice, many will opt for hospice care rather than the often cruel and futile use of options such as more chemotherapy.
Almost half of the cost of health care is spent in the last six months of life. This is a huge and increasing burden for our ageing society.
I spent a week with Denise and met the team that cared for her. As a practising intensivist, I had the privilege of seeing a system that was co-ordinated and centred around the patient’s wishes.
The state of Oregon also respects the right of patients to not be resuscitated or transported to hospital by an ambulance. She has the document on her at all times and a copy fixed by a magnet on the refrigerator.
Currently, in Australia many people are transported to hospital because there is little in the way of comprehensive and co-ordinated community-based care at the end of life.
So it seems that improved care for the terminally ill would be of great benefit to society, both in terms of less suffering and cost savings – a win-win situation as they say.
This is the second part of Talking about death and dying. To read the other instalments, click on the links below:
Part One: Deadly censorship games: keeping a tight lid on the euthanasia debate
Part Three: Caring or curing: the importance of being honest
Part Four: Death and despair or peace and contentment: why families need to talk about end-fo-life options
Part Five: Body or soul: why we don’t talk about death and dying
Part Six: Planning your endgame: Advance Care Directives
Part Seven: A challenge to our leaders – why don’t we legalise euthanasia?
Part Eight: A personal account of life with terminal cancer
Join the conversation
Comments (11)
lesley archer
registered nurse (retired) (logged in via email @bigpond.com)
YES! IT'S TIME! How would one access the concept of the Oregon Model of Hospice Care I wonder? Also, who could we talk to (please don't tell me our local members, Fed. and State)? Having said that, if there is no one to Talk To we are just going to have to Do It Ourselves, from the Ground Up! Before I die (I'm 74), I want to gather people where I live, (on the NSW Coast, away from the Big Cities), and introduce the concept of Hospice Care into our LGA. We currentlty have an un-cordinated…
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Paul Richards
I agree Lesley, this issue has been ignored too long. Also add that nursing roles need to be given more community trust, as nurses have history of advocating for residential patient care.
It will take very evolved thinking to tackle the medical culture and development of greater levels of awareness in all our communities.
Kenneth's article on 'The Conversation' is in the right direction. We may all wonder how many medical professionals will have the courage to step up publicly as this is a highly emotive issue.
Reema Rattan
(Editor, The Conversation)
Hi Paul and Lesley,
Over the next two stories in the series are from a nurse and an oncologist. I hope they will encourage others to start discussing this importance issue.
Reema
Jennifer Evans
Retired Social Worker (logged in via email @bigpond.com)
Having worked in the area of advance care planning for five years prior to my retirement, and now volunteering with a community based palliative care (hospice) service, I have seen numerous incidents where sensible doctors and health workers have had the courage to talk openly about death and dying to patients and families and where "good" deaths have been allowed to happen. But such conversations are still too rare for those people caught up in the conveyer belts leading to ICU. Each of us, no matter our age, must have the conversation with our familiy members about what we would and would not want if we are in a life-threatening situation where we cannot speak for ourselves. And we would be very wise to appoint a Power of Attorney (Medical) who has the authority to speak up for us. In this way we can choose to avoid receiving futile care and dying in ICU. See www.respectingpatientchoices.org.au for more information.
Narelle Hanratty
(logged in via Twitter)
Thank you for this article. When my father died in ICU 18 months ago my family and I thought it was the only realistic option, even though his fear and trauma were palpable to all of us. We were all naive. It was only after that I started wondering if it had to be like that.
Alan J Marshall
Retired medical radiographer (logged in via email @hotmail.com)
I was in radiography for approx 45 years, most of my working life. Much of the experience was gained doing "mobile" X-Rays in the Intensive Care Unit, both in the UK and here in Australia.
I can recall numerous times looking on as efforts were made to rescuscitate a patient. Working within a "speciality" area of medicine one can often get a distorted impression, not having sufficient knowledge to be able to fairly judge the situation.
One occasion stands out in my memory. In Bristol, UK, a person…
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lesley archer
registered nurse (retired) (logged in via email @bigpond.com)
It must have been difficult for you at times Alan. You don't mention
how old the patient was..... I'm assuming he was an elderly person.
Don't reply if this was the case. The 'pecking order', is necessary of course, but can be hard to take sometimes.
And to Jennifer Evans, I wish we had you up here in our isolated little community!! I searched Respecting Patient Choices about 12 months ago when I saw an article written by the Chief Intensivist (his name escapes me just now) at the Austin Hospital…
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Dennis S. Pacl
Palliative Medicine Physician (logged in via email @pol.net)
Evocative and thoughtful commentary here, I appreciate it. Having worked as a Palliative Medicine specialist in the US and also in Australia, I find that the practice attitudes of Australian doctors are more favorable to palliative care. It is less likely that you will die in an Australian ICU from end-stage disease when compared to the US. Supporting data regarding attitudes across developed countries can be found here http://bit.ly/uEj9ze . Australian Intensivists seem to have the strongest attitudes…
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stephen prowse
(logged in via Twitter)
Thank you for this article. While this is a complex matter that causes great frustration, it seems that a key issue has been identified;
"Compounding the problem of futile care at the natural end of life is the fact that doctors, as a rule, don’t feel comfortable talking about death and dying"
There will be no improvement until we see a change in culture and behaviour by politicians and medical practitioners and to a lesser extent the community, particularly those who have not had to face these matters. As a 58 yr old in an ageing population who has recently seen the death of both parents, I believe our politicians and the medical profession (on this matter) are letting us down.
Rachel Heap
Intensive care specialist (logged in via email @hotmail.com)
This is written by my old boss (who always was a bit of a hero to me...). It eloquently describes the cause of an increasing sense of frustration I feel when I work in ICU as a specialist.
Good palliative care is vital, and perhaps more importantly, recognition from both 'society' and medical staff that we all have to die of something - and that process does not have to include hard core technology, drugs, and organ support in an ICU.
Helping a patient and their family to a dignified and peaceful…
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Cris Kerr
Community Health Researcher, Advocate for the value of Patient Testimony (logged in via email @optusnet.com.au)
We seem to be able to openly discuss 'dying well', yet don't seem willing to openly discuss a treatment such as low dose naltrexone (LDN), which patients themselves say they're using successfully to treat their immune system disorders (MS, HIV, ALS, Fibromyalgia, Crohn's disease, Cancer, etc, etc) to minimize disease progression.
20+ years have passed since Dr Bernard Bihari first prescribed LDN in New York. The evidence for efficacy of this treatment has continued to grow, beginning with patients own testimony and now being supported with a growing list of scientific evidence... yet it remains ignored.
Doctors, scientists, researchers... please... debate this treatment first before you debate how to 'die well'.