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MANY years ago when I was starting out in palliative medicine, I went with an oncologist to visit a youngish woman who was rapidly deteriorating as a consequence of her advanced cancer.
I saw a clear but quickly masked flash of horror cross the face of her husband when the patient said she would be willing to sell their house and spend every last cent they had on anything that offered her even a remote chance of a cure.
The prospective widower knew that he would never be able to bring himself to refuse her wish, but the couple had two peri-adolescent children and he was preparing himself for the role of a single parent. He knew his wife was dying and that life would be a struggle. He had immediately recognised that it would be made very difficult indeed if he and their children had no house and no money.
This case, de-identified by time, raises an issue that is virtually impossible for families to raise themselves — the wide variety of burdens that are borne by families as a consequence of the partial successes of modern medicine in delaying dying. It was raised in last week’s Four Corners on the ABC in an episode titled “Buying time”.
As well as the direct financial costs to families, there is the prolonged disruption of being unable to continue on the course of their own lives while the patient’s life is extended, sometimes by years of inexorably diminishing quality.
Whenever we deploy expensive technology in health care we divert resources away from long-term community necessities such as education, infrastructure and the maintenance of the environment. If we persist in a never-ending quest to delay dying we may find we have squandered the chance to invest for the future of our offspring.
Obviously there are benefits for patients, their families and the community from interventions that prolong an active and independent life — they are self-evident and generally acclaimed by all.
Less often do we discuss downsides when interventions extend the dying process The emergence of this issue in the past 50 years or so is a challenge to our community values.
Until the middle of the 19th century life expectancy was low — you got sick, you got better, or you died, and there was little that could be done to stop nature from taking its course.
Families did not want those they loved to die and grieved deeply, but they were less likely to be surprised by death. The rapidity of death in all age groups meant that they were able to mourn and then move on with the necessity of making a life for themselves.
Things are very different in the 21st century. We have constrained the vast bulk of the diseases that killed children and young adults, and are left to die mostly of the degenerative diseases of old age like cancer and heart disease. However, as a community we continue to approach these diseases with the same paradigm of organ-system problem-based management that brought us success in the past.
Our medical training has encouraged us to focus on the immediate ailment at the expense of careful consideration of the patient as a whole. At the same time patients, their families and the community have learned to view the clinical state of ageing and degeneration as a physiological and anatomical problem to be solved.
The consequence of a problem-based approach for the frail (usually elderly) patient and their family can be a long and drawn-out death characterised by cycles of anxiety, fear, hope and uncertainty. For some conditions, where patients may be suspended at the brink of death on a number of occasions over several years before they die, the process may be akin to prolonged torture.
Patients may find it difficult to express their preparedness for death. Families can be bound up by the strength of their emotional bonds and sense of obligation — they cannot move forward and they cannot go back. They often feel unable to vent their distress, or even perhaps to acknowledge it to themselves, because to do so would be considered a betrayal of their obligations and be seen as heartless, unfeeling or self-centred.
Our biological and social evolution has not prepared us for prolonged dying and unrequited grief as an unforseen consequence of modern medical care. As a community we find it very difficult to discuss limiting the availability of health care that might delay dying.
It is time to accept that death in old age from degenerative diseases is normal and inevitable, and to acknowledge that, at times, even younger people will die.
I will always remember that look on the husband’s face as a reminder that the way we approach death has consequences that extend beyond the patient, with repercussions across families and down generations. I have also seen the faces of those who, while they may be sad about loss and separation, go peacefully to their death, accepting of its inevitability and reflecting on the life they have led.
As a community we can — in fact we must — re-learn to accept death as normal and stop spending vital resources on burdensome treatments that, with little or no benefit, delay the inevitable. It will take fine judgement, careful thought and open discussion about our values.
We might then understand how better to live life to its normal and natural end.
Associate Professor Will Cairns is the director of the Townsville Palliative Care Service, Queensland.
Important article – thank you. Reminds me of the issues explored in Lionel Shriver’s novel “So Much for That” – in which a family spends their entire savings fighting mesothelioma – known to be marginally treatable from the outset. One of the issues is the desire to ”fight” the cancer, and the willingness of the (fictional) Oncologist to collude. ON the other hand, I also see the need to develop new treatments that make previously untreatable conditions treatable. I generally think of it like this: go all out to extend the lives of relatively young people, where every additional day with their children might be precious. Resist going all out with someone who has lived a long life, and whose children no longer need parenting. Simplistic, perhaps.
Well said, Will.
Both of my wealthy parents died after age 80 years as a result of , in my opinion, unnecessary, costly, private surgery.
While we may blame patients for clinging to life, I believe that there is a lack of informed consent by our profession, particularly for private patients, whose treating surgeons stand to gain financially from futile treatments. My father refused to consent to the final surgery , so the surgeon ignored his right to refuse treatment, and coerced a family member to sign.If the surgeon is reading this, my father was the patient who stated that he felt like the pig waiting for the pig-sticker to stick him.
My mother was told that extensive surgery for a tumour which had disappeared afte chemo was essential, and that she would be dining out in restaurants after the surgery. Rather, she wasted away as a result of the blind loop surgery,. while the surgeon dined in restaurants, and she prayed for death to relieve her suffering.
I oppose euthanasia, which I see as killing from unnatural cause, as much as I oppose futile surgery .
I support the right to informed consent, the right to refuse treatment, the right to die of natural causes, and the right to adequate analgesia while dying of natural causes.If we dement, Dr. R , we do not need to be euthanased, as we will forget to eat-just do not force a gastrostomy tube on us. If we go mad, do not euthanase us, just leave us to our folly, elect us to government. , where we will sell our natural resources to foreign countries, who will harvest our corneas , saleable organs, as they do with dissident child students, along with our coal , gas, and iron ore while fracking our environment…
I could not agree with you more Will.
This is a compassionate article that squarely faces the dilemma of a modern western society that is pre-occupied with maintaining life at all costs. May I suggest that two strategies might help to resolve the dilemma. (1) Why not regard the sensitive discussion of health care options as a legitimate medical intervention in its own right? Simply thrusting medical and pharmaceutical solutions onto people at a time of great emotional vulnerability and upheaval may be seen as “doing something” but so also is the demonstration of human understanding. (2) Would there not be merit in actively encouraging the populace to make Advance Health Directives while they are able to consider their views on their future health care dispassionately. In my experience, there Directives frequently forbid the very activities that modern medicine at end of life seems determined to pursue. Both the suggestions above actively seek patient and family involvement in end of life decision making but surely they are entitled to this, especially as they are frequently very pragmatic about the big issues entailed.
I agree with “another view”. I have unfortunately had more than a few relatives and friends die or fall ill and have often witnessed the ravages of cancer and old age up close. Like all doctors I have also treated dying patients. I also have a friend with stage 4 melanoma who decided to go ahead with surgery and experimental treatment which some might have deemed futile, and has managed to confound the statistics by being completely well and in remission for two years. While I applaud the compassion of the writer who clearly has much expertise in palliative care, I am also concerned that the concept of futile treatment remains an arbitrary one which is bound by the times we live in, personal preferences and the current state of medical treatment. 100 years ago it was futile to treat pneumonia. Fifty years ago any attempt at cancer treatment would have been futile. It is a delicate balance indeed to decide when a treatment is futile. It is also important to separate the issue of cost containment with the issue of futile treatment, as there is a clear possibility of major conflict of interests. In any case the cause that has been quite successful – advanced care directives are very popular among the educated over 70s I know although my own mother, a retired doctor, has expressed no interest and distrusts clinician paternalism. As for the doctors for voluntary euthanasia, I am concerned that your choice will put me at risk in the future so my fears are entirely selfish. It is well documented that some countries with medically assisted suicide have extended the concept to include those with dementia, psychiatric illness and children.
Thank-you for your very thoughtful article, and also to Jan Bowman for sharing her experience.
I am glad to see that rozmed was first cab off the rank in response to this article. He is one of the conveners of drs4vechoice.org that brings together those of us doctors who believe a choice of medical assisted dying should be legitimate in addition to palliative care and without doubt effectively ‘end stage palliative care’. While much of Dr Cairns’ narrative comprises a series of friendly motherhood statements, he gets closer to a more pitthy and pragmatic assessment of end of life issues in reference to the Four Corners episode entitled “Buying time”. While I am sure those oncologists are motivated by the highest ideals, there was a hint of the madness of the enthusiast in the expenditure being contemplated against an unpredictable outcome. When it comes to the dilemma of cash versus survival, the latter must win despite every attempt of the consultant to be even handed.
We should find the time to revisit Emma Thompson’s masterly performance in “Wit”. It may be something of a caricature of the end of life but the message is serious enough. At no time in her decline was euthanasia offered or even discussed but then these stage doctors were hardly communicating. They were most interested in outcome numbers as I fear many of the superspecialists may be. How else indeed are we to discover who is the top of the pile?
I have no idea how the oncologists are to trial their latest drugs but I do think that the offer of these drugs expensive or not should be in the light of their being experimental and that the patient may care to consider a short circuit to the misery of the side effects of chemotherapy.
Jan’s experience in the AIDs hospice raises another important, perhaps contrary aspect. Since that time, as we all know, new drugs have been developed that have allowed the majority people with HIV to manage their disease and lead productive, fulfilling lives. Would effective drug development occur if palliation, rather than searching for a cure, was the default response to terminal illness?
And compare the remission rates for many cancers today with treatment outcomes prevailing in the 1970s; many cancer patients have had many more months or years of life than thought possible back then. We may not always be able to prevent death, but those delays can mean that patients and their families have the extra time to share important events, like weddings and anniversaries, perhaps witness the birth of grandchildren. These are not experiences to give away lightly.
Of course there comes a point where the dying must be supported to die, and the living must get on with life. But that point cannot be arbitrarily determined, nor applied consistently across patients and families. If suitable treatment is available and we deny it on cost rather than clinical grounds, do we truly remain a compassionate society?
Will is right, there also needs to be a discussion about how we spend our health dollar, and the trade offs we might incur against other forms of public expenditure. But he seems to be advocating that these discussions should lead us to spend less on health. A national conversation where these expenditure trade offs are made transparent should also embrace the possibility of society deciding to spend more, if that reflects our true values.
Death will claim us all in the end. But when he knocks, we all hope not yet.
Well framed Will, cannot agree more!
Well put Will.
A nationwide dialogue is needed, and it will take more than one 4 Corners episode to get it off the ground.
Dear Will, I remember spending two weeks attached to an AIDS Hospice in London in the early nineties. A nun form Angola was on the attachment with me. On the first morning ward round, we were taken around the patients, who were emaciated, incontinent and sometimes demented. I was in shock by lunch time and asked the nun “You must see this all the time in Africa?”” No”, she said,” I have never seen anything like this. In my country we cannot afford expensive treatments. The patient usually dies with their first AIDS related illness”. This left a lasting impression on me. Are we allowing patients to die with dignity if we keep them alive no matter what, to have a terrible quality of life? When does the prolongation of life compensate for the burden of illness, disabilitiy, and dependence on others? There is a tipping point. As doctors we need to help each patient to find it.
My wife is in a nursing home, inappropriately, I think. Most around her a aments, continually wandering around the corridors, mumbling and quite unable to converse. It is no good putting on the TV or a flim or trying to organise a game. But they are not suffering as far as we can tell. Should they be candidates for euthanasia along with those with persistant, intolerable and incurable pain? Makes you think! KBO
Are you aware that QLD law gives or is interpreted to give patienst the right to demand futile therapy?
Thus we might acheive the US rate of dying in ICU instead of in comfort!!
QLD: the smart state……
Dear Will, But this is the dilemma is it not……………………………….when the patient said she would be willing to sell their house and spend every last cent they had on anything that offered her even a remote chance of a cure.I’m certain that would not be my response to the inevitable but apparently a lot of patients want to hang onto life at all costs, and their desperate plea must be taken seriously. Now retired as a medical researcher working at the molecular level, I often wish that the most earnest and clever heads of units would prohibit media announcements of their new findings about some new repressor gene, monoclonal antibody, new drug etc that promises in the future a cure for any form of malignancy. Notably, these announcements often appear just before NH&MRC grants are submitted. Trouble is, they raise false hopes in patients facing the consequences of their disease. Just wait until the experiments have finished, the clinical trials in humans (not experimental animals) completed with outstanding results and the remedy affordable to most people. I now detect a rising skepticism in the general public after years of false hopes and that’s a pity for the reputation of hard working medical scientists. Let’s face it, with some exceptions (early detection, successful surgery, occasionally chemotherapy) there is not much on the horizon to give comfort to either patients or their doctors when it comes to a diagnosis of cancer.
This is a very important conversation that must in particular be had by oncologists, including the enormously caring doctors on last week’s “4 corners”. The problem for oncologists is that we are conflicted by the need to care for our patients during their death, and our need to find new drugs to bring into frontline therapy (the only place where treament changes really will improve cure). The process of drug development includes phase 1 trials to find the highest tolerable dose usually performed in patients with end stage disease. Unfortunately, all too often we allow the patients who give up their precious time at the end of life to take part in these trials, to believe that they may be miraculously cured. This is exascerbated when we access drugs for them “on compassionate grounds”. This latter process not only gives false hope to patients and their families, but does not even advance the field of knowledge as the data is not being collected as it would on a trial. This process must cease.
I know a new treatment we can all use …. off-patent, cheap and easily accessible to most …. it is MERCY! Too often we treat people with all sorts of death-defying torture, but these all inevitably fail. Mercy, used together with that other rare substance called WISDOM, and the much maligned and misunderstood LOVE, can produce comfort and peace without the need to resort to expensive false hopes, nor those pretenders called PAS (physician-assisted suicide) and ‘euthanasia’ – which has so many meanings that it is a word of confusion rather than meaning.
Putting animals ‘down’ ought to remain the province of veterinarians and abbatoir workers, but graceful care can be delivered through modern medical drugs and devices to utilise mercy through wisdom and love, in order to retain dignity whilst the inevitable takes place in a dying patient.
Doctors, treating humans, already have access to the legal and ethical capacities to jump in and use the above to obtain an acceptable outcome for most people. We should always obtain consent with adequate information given to the patient and relevant carers when necessary … perhaps we do need to build a knowledge of how to define futility, though. However, it is usually pretty obvious, and easily measured by ridiculous cost/benefit analyses.
This is a very valuable contribution to the important discussion we all must have about death.There is very good evidence from countries that have legalised voluntary euthanasia or assisted dying for terminally ill people that such legislation makes it easier to have the discussion of all the options for more or less treatment before death .Over 80% of Australians support the right of terminally ill people to be able to chose to end their sufferring through assisted dying .