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We need to talk about dying: opinion

By: Kenneth Hillman
21 November, 2012

As an intensive care physician I’m increasingly confronted with managing patients who are at the end of their life.

Australians need to be aware that the way that they will spend the last few days or weeks of their lives is largely predetermined, not by their own wishes but by a medical conveyor belt from the community into acute hospitals and from there into intensive care units.

There’s no conspiracy behind this, it has just happened this way. The drivers include unreal societal expectations of what modern medicine can and, more importantly, cannot offer, fed by daily reports of the latest miracle cures; a medical profession that’s uncomfortable with discussing dying and death; medical specialisation that has resulted in amazing advances but focuses on specific single-organ problems and not the patient’s overall health status; and a lack of doctors who can stand back and recognise patients who are at the end of their lives.

All this is reinforced by a society reluctant to openly discuss issues around ageing and dying. The perfect storm.

Interestingly, nobody wants it this way. Almost 70 per cent of Australians want to die in their own homes. Yet, almost 70 per cent will die in acute care hospitals.

People who suddenly become ill in their homes or in the community usually have an ambulance called. They are now on the conveyor belt. Ambulance personnel have no discretionary power – they have to take the patient to an acute hospital for further assessment.

Acute illness or trauma is frightening and most of us have little knowledge of what is available in the acute hospital. So, the journey starts – and for many, it’s appropriate. Medicine can perform some miracles. But for others, the so-called illness state is a normal and expected part of the dying process. Differentiating can be difficult.

The major challenge is to identify a potentially reversible component of a disease. Something that medicine can recognise and reverse – a patient who has fallen and fractured his hip can have it repaired, for instance.

But for many older people, there’s often little that’s amenable to modern medicine. As people age, they collect chronic health conditions or co-morbidities – this is the medicalisation of the ageing process. These conditions can sometimes be controlled but they’re not usually reversible.

Organ function declines markedly with age. Muscles become weaker, bones become more brittle, vital organ function deteriorates, brain function diminishes and wrinkles appear. The rate at which this occurs is encoded at conception and is called apoptosis – the programed death of cells and tissues.

You can optimise your chances of reaching your apoptotic potential with the help of living healthily and modern medicine. Diabetes can be controlled, for instance, and coronary arteries unblocked. Nevertheless, ageing is unavoidable and dying inevitable.

Eventually the combination of chronic conditions means that even a small acute problem such as a simple urinary tract infection can result in death. This presents the dilemma for medicine and patients – how far do we go to sustain life?

Doctors are programed to cure. In an age of medical specialisation, they concentrate on incremental improvements in care of their own organ and refer to colleagues for advice about the other problems. As a result, elderly patients are often taking many medications with little or no benefit in the context of their chronic health status.

Clinical trials showing the efficacy of medicines are conducted in selected patients, not 90-year-olds with many chronic health problems. And when the end is finally near, those at the end of their lives come to hospitals for their last few days or weeks.

Many are placed on life support machines and can no longer relate to their relatives and friends. Those who are conscious often plead to be allowed to die.

As an intensive care specialist I often become frustrated with my colleagues’ failure to recognise when patients are at the end of life. One of the worst phone calls an intensivist can receive from a colleague goes something like this, "I’ve had a chat to the relatives and they say they want everything done, can you help?"

This puts people like me in a difficult position. First, there’s an inference that what we can do will make the patient better. Then there’s the difficult situation of having to explain for the first time that we believe the patient is at the end of her life and any further active management would be futile.

The speciality of intensive care has a special responsibility to begin a frank and open discussion with our society about the limitations of modern medicine and the inevitability of ageing and dying. Hopefully, this will help people think about how they want to end their life.

Kenneth Hillman is a Professor of Intensive Care at UNSW. Vital Signs: Stories from Intensive Care is published by NewSouth Publishing.

Source: The Conversation

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Mary Tehan | Monday, November 26, 2012, 11:55 AM
Advance Care Planning may mitigate some of these concerns(speak to Prof Bill Sylvester at Austin hospital ICU Melbourne. Having said that, as a family member of my recently deceased 99 year old mother, the staff at her local acute public hospital were always amazed at how we, that is, mum and family,wer prepared to discuss and decide that NFR Orders were appropriate, if needed. During my involvement with palliative care (in a professional capacity), I can declare that there have been many discussions with Ambulance Service Management over years, to help frontline ambos be able to, based on assessment, discern NFR or not, and/or hospital admission or not. One critical question is how to support healthcare professionals who have the courage to tell the truth to patients and families re end-of-life care needs. The flack they receive can be relentless (from unrealistic expectations) and demoralising. Conversations about death & dying are everywhere ... just not so much in the healthcare system. Disseminate information about Advance Care Planning in libraries, supermarkets, churches etc ... we people live out their daily lives BEFORE a crisis occurs. Then get healthcare facilities to accept them ACROSS sectors (e.g. aged, acute, community care)... the lack of co-ordination needs to be addressed.
whitetig | Tuesday, November 27, 2012, 8:26 PM
Dr Hillman is completely correct from what I have observed. People see TV shows, and think that medicine and science can provide the ultimate cure, when in reality we all will die someday, somehow and usually it is not when we planned. The fact that people think they can control when they are going to die, or that everyone is going to grow to a ripe old age is just unreality. Also people think that when they get old they will have the same quality of life that they had when they were young which is a fallacy. I work in aged care and can say that many palliative care residents are kept alive only by intervention. People can no longer eat, toilet or respond to such basic stimuli, and so are hand fed to maintain their lives, which are largely spent in an unresponsive state. It is a big dilemma for society in that when is enough intervention enough? When do we let go? Do we recognise that quality of life should be a deciding factor for intervention?. A personal friend who was in her 80s was given open heart surgery to prolong her life because doctors "did not want her to die in her sleep". Ultimately her death was a struggle and involved a lot of pain and suffering when she could have died in peace. We are not immortals, we need to develop in our society a level of reason, acceptance and maturity to discuss these issues, particularly quality of life and letting people go who want to go.
Twanny Farrugia | Thursday, December 20, 2012, 9:12 AM
First I like to congratulate Medical Search for willing to raise such an important topic on death and end of life issues. Having worked in aged care and as a loss/grief educator/counselor combined with my own personal experience of being chronically ill with multiple health issues while caring for an elderly mother (88 YO), this topic is often difficult for many to discuss. Therefore, it is very important that we endeavour to raise community and the medical profession’s awaarens of this topic. Overall I agree with Professor Hillman and the responses to his article by Tehan and Whitetig. I often found that people within the health system often appear to have more problems with death and end of life issues then members of the general public. Of course this is understandable especially with the medical professional who have been trained to ‘cure’ at all costs. Furthermore, this is often then reinforced by the erroneous expectations of some members of the general public who expect our medical professionals to create miracles and keep people who are knocking on deaths door to stop that door form opening. I have often argued with doctors while working as a discharge office in a private hospital that when a patient has a “NFR” that is what it implies. Yet some doctors will blatantly dismiss this patients often last request and still ‘bring the patient back’ often resulting in patients, especially elderly ones, having a prolonged painful death. It interest me that in a so-called humane society we never allow our pets to suffer if they are terminally ill or injured beyond the ability of Vets to restore them to a level of quality of life, we euthanize them. However, when chronically ill and or disabled people like myself or our elderly are nearing the end of life, our lives are prolonged even if often painfully and not permitted to die. My elderly mother and I often have discussed this issue as she has definitely requested “NFR” and her rationale for this is simple. As she says, “At 88 what do you expect? My motor is running down and eventually will stop. When that happens please make sure it is not restarted.” I love my mother’s attitude and perhaps those medical professionals who consider maintaining life at all costs could take lessons from my mothers and other elderly peoples views and allow people the right to die when by prolonging it you will cause more pain and suffering.