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.
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 Three: Caring or curing: the importance of being honest
Part Eight: A personal account of life with terminal cancer