When my father died last year of cancer it took me some time to fully grasp the manner of his passing and to realise my own culpability in allowing the doctors to destroy whatever dignity death might have allowed him if I had had the courage and the knowledge to stop the torture.
I allowed the doctors to conduct nuclear war on a (clearly) dying 83-year-old man — what they described as “palliative” radiations. In my father’s case, and I believe in the case of many thousands more, such interventions can be a shocking, perverse form of professional “kindness” that is built into the orthodox medical machine that just does not (want to) know when to stop.
The result of their efforts was a death without honour for a man subjected to totally unnecessary radiation that almost immediately sapped the life-spirit from his body and soul, left him broken, unable to consciously bring closure to his life. I estimate the professionals pocketed about R80 000 for their handiwork in those last few weeks. In hindsight, I should have paid them triple just to let my dad die with some dignity.
The reality of all this came into sharp focus this week when I came upon a remarkable piece in the latest New Yorker magazine written by Atal Gwande, a surgeon/journalist (yes, there is such a species) with (literally) inside knowledge and acute insight into the treatment and care of terminal patients.
The Gwande piece, titled Letting Go, is not only relevant for those having to deal with the deaths of others, it’s about all of us confronting head-on our own deaths too. You may find this a little morbid, but the statistical chances of any one of us dying slowly from a degenerative illness such as cancer or heart disease are now so high that the Gwande article is, I believe, required reading for all sentient beings — those who are conscious of the finiteness of their lives but not the timing of their deaths — and who should — at sometime — prepare for this reality. Failure to do so will result in our epitaphs being written in a miasma of denial, ignorance and fear.
You can read the Gwande piece by clicking on this link.
I urge you to read the entire article as it develops a series of ideas built on numerous anecdotal experiences and case studies. After reading it I’m sure, like me, you will start the process of writing a living will, giving you some control over how to let life go.
Some quotes from Gwande article:
“We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets — and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”
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“Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.”
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“Spending one’s final days in an ICU because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realising that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s OK.” or “I’m sorry” or “I love you.”
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“These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition — advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty — with how, and when, to accept that the battle is lost.”
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“Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4 493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer.”
Even chronic illness drugs are a problem. For years my Mom was prescibed high blood pressure pills. Recently she came very close to dying at 88 years old. The problem – she suffers from low blood pressure. So the doctors got it all wrong.
Doctors make money out of our illness. They have a vested interest in keeping us sick. They are not unbiased care givers. So, agreed, we should determine our own fate.
Bruce, I empathise fully with your comments and sympathise with your loss of your father, especially under such conditions. “Palliative” radiation? What an obscenity! The entire point of palliative care is to relieve pain whilst the illness takes its inevitable course. Radiation only increases suffering!
I know what I am talking about here as both my husband and his ex-wife died of lung cancer– within 9 days of each other. In that same year I lost 8 more members of my family including my mother. Several of those deaths were from cancers and all had had radiation and or chemo. All died in hospital.
@ “… in 4 493 Medicare patients with either terminal cancer or congestive heart failure… they (the study) found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer.”
In other words, all this ‘treatment’ is not actually ‘extending life’. It is only complicating the dying.
My husband had surgery to remove a tumour from one lung. The surgery was “successful” l but some rogue cells migrated to his brain and just under a year after the surgery my husband died. Over the years we had discussed our attitudes to ‘aggressive treatment’ for cancer and had agreed that we would not accept treatment–apart from surgery—for any cancer at stage 3 or beyond.
Continued below
Cont’d from above:
Earlier diagnoses might be treated but it would depend on many factors. By the time he was diagnosed with lung cancer my husband was not a candidate for radiation or chemo in any case owing to a number of other physical factors.
My husband’s ex-wife, however, opted for both surgeries and aggressive experimental treatment. She knew it would not ‘save’ her life; it could only slightly delay her death. She soon regretted her decision but stayed with the treatments in hospital. The drugs delayed her death by about three months, months of dreadful suffering. As part of her treatment agreement she willed her body to the teaching hospital where she was treated so that they could study the effects of the experimental drugs post-mortem.
I admit I lack such courage and commitment. My Living Will spells out in detail what I decline to accept in the way of treatment for any terminal illness or condition. One also needs a Medical Power of Attorney to be executed by a friend or family member. It is a burden to accept such a role but it is a burden of compassion and mutual friends might be willing to do this for each other.
In a world obsessed with ever more radical methods to postpone aging, I suppose it is inevitable that more and more ‘treatments’ will be developed to “extend life”.
Unfortunately, extending life is more often merely a way of prolonging the pain of dying.
Thanks, Bruce. A jolt of reality and a wake-up call.
Thanks for the article. Remember that all treatment is by consent ( as you allude to), either direct, indirect ( living will) or via a family member. If it were not, many areas of medicine would be considered assault.
Granted that decision making during times of stress is difficult- for both parties.
@Owen- Your generalisation regarding doctors’ vested interest in maintaining illness… probably untrue for the vast majority of doctors. And certainly for me. If that’s your experience i suggest changing doctors!
Bang on. And when the medical aid / money runs out, all the “concern” disappears.
Unfortunately, doctors cannot do nothing-they are obliged to try every treatment they can think of. You must have a living will and a DNR or, as my mom did, refuse to see a doctor at all. This is where a hospice or frail care can do wonderful work and allow the aged or terminally ill to die with dignity.
Thanks Bruce – very good to have this aired. I truly hope that when my generation’s (now in my early fifties) time for dying comes – not that this happens simultaneously! – that some kind of assisted/ consensual death can be enabled, with humane advice and support . I used to think (after watching my mother die at home ably assisted by caring hospice workers, but horrendous nonetheless, that I would chose assisted death without doubt, but as I get older, and my ego diminishes and along with it the terror of being ‘utterly dependent’ on others – I realise that however harrowing a natural ‘in its own time’ death can be in our death-santised society, it also brings many priceless gifts and lessons in its wake. I so often have cause to silently thank my courageous mother for choosing not to have the treatments, and choosing instead to die at home in dignity. I was stressed as hell by the end of it, but after she had died I was able to integrate the many traumatic aspects of her journey towards death, and realise that they were shocking only because we were so unprepared and unsupported. Subsequently when friends tell me of how harrowing their parents’ medically prolonged deaths have been in hospitals, I realise that this is an emotional frontier we really need to open up to people’s stories. Hopefully it will bring us to a greater understanding of our dissociation from death.
I watched my father die at 85 after a series of strokes. He was comatose for 10 days before dying. In that time the surgeons requested permission from my mother to operate on his bleeding ulcer! She refused, pointing out that nothing would bring back the man we knew, so why subject him to pointless treatment.
My mother died of cancer which had spread to the brain, at 86, in a frail care ward. It took 3 months for her to go slowly – we would have opted for euthanasia if it was possible a month before she finally died. My brother and I specified that the only treatment she was to have was relief of symptoms and pain. Her sister was still wanting investigations to find the origins of the cancer! She clearly wasn’t ready to let Mom go in peace.
I would probably commit suicide in the event of cancer so that I can control the “dignity” aspect – bit harder if one has a stroke!
Exceptionally well put and a motivator to get organized for the inevitable.
And in those living wills do not forget those of us whose minds will degenerate to a point where we have no control over our otherwise healthy bodies.
We will always be suckers to any touts selling ‘longevity’, be they doctors or Dr Rath himself, as long as we refuse to take charge of our own deaths. Its a cop-out to blame others for taking the responsibility of our living/dying off our own shoulders. And its deeply unfair, having opted out of controlling our own death, to then turn around and blame others for not making that choice for us.
Decide when you are going to die. Prepare for that date. Budget for it. And then just Do It! Don’t wait around until its too late to decide, and then blame others for failing to make Your decision and take actions that you failed to take.
@ Bruce….with you 100%
@ Siobhan…..can you point me in the right direction in the context of a Living Will and the Medical Power of Attorney. Any good SA websites. My Living Will is very old and needs revising
Thank you, Bruce for this article. My husband died of melanoma cancer two years ago 9 months after diagnosis. He was “lucky” in that he did not suffer long or become debilitated. But all chemo and radiation did was change the last six months of his life into incredibly hard months.
Bruce, thanks for bringing this up. We need to take more responsibility for treatment and not simply hand over power to medical doctors, however much more they may seem to know.
While I am totally in agreement with regards to the necessity of a living with and DNR provisions, complaining about modern medicine while benefitting from it is extremely hypocritical. Often the larger cause for the phenomenon you are describing is not the doctors, but the patients and their relative not being willing to accept that the end is here and that they are fighting tooth and nail for every extra second – regardless of the cost or quality of life thereof.
It is easy to complain in hindsight after the loss of the battle against cancer – but not fighting that battle is usually not acceptable to relatives. Generally people see it as “giving up” and it has hugely negative connotations.
Yes I agree that medical care can include more care and less medicine than it does, but is anyone willing exchange the technology of today to go back to bleeding, leaching and exorcisms?
Do not let Perfect be the enemy of Good.
Loosing someone is heart rending. What is even sadder is to encounter those left behind who remain angry, and seek retribution from those they think could have behaved differently.
Sometimes there are culperable errors, but normally, not.
The doctors are not to blame. We are. They are unbelievably scared of the legal ramifications of not treating. Without a proper living will or directive, they are obliged to offer any form of theraphy that we can choose to opt for or not. If there is no will or directive, families need to act in a united fashion and provide clear documented instruction. Many a doctor has been legally challenged because of this double edged sword.
@Anton
You might want to try this organisation.
The Living Will Society:
http://www.livingwill.co.za
Tel: 031 266 8511
Fax: 031 267 2218
They offer a Do Not Resuscitate Living Will with three copies for you to lodge with a doctor, a friend or family member and one for you to keep with your personal papers. They also issue stickers that can be affixed to your patient chart on admission to hospital and an ID card with the DNA and Living Will info on it.
A Medical Power of Attorney can be drawn to your specifications by an Attorney and is confirmed by a Notary’s Stamp. The POA and the LW can be attached to each other for added protection.
I hope this helps.
Correction of above: DNA should read DNR!
Losing someone close to us is heart wrenching.
It is the doctors job to keep on trying to heal you, he would not be a good doctor if he stopped trying. It is your choice when to stop.
Even though most doctors try to keep a professional distance they have feelings too. They didn’t force you into anything. And most of the R80 000 would go to the hospital or the pharmacy not the doctor.
Bruce, I’m not sure what you’re trying to say with this article. I too have lost close family to cancer and it can be a very undignified way to die. However, the treatment regime is explicitly under the control of the patient or their legal guardian and not up to the doctor. However it is a doctor’s legal obligation to do everything in their power to prolong life, as long as they are given permission. Euthanasia is another debate entirely.
When you mention “orthodox medicine” in your title are you hinting at better results through alternative means? If so you would do better to argue for their efficacy rather than shamelessly lambasting doctors for doing their job. Oncology must be one of the most depressing disciplines in medicine.
Thanks Siobhan
Thanks, Bruce. Very thought provoking. We have simply handed the responsibilty of our health care to the medical profession and the pharma companies. We need to take back that responsibilty as much as is possible. We had a dear friend who went into hospital. She was 84. She died and the medical team resuscitated her. She “lived” on life supports for two weeks until her family had to switch them off. The bill? Astronomical. AND the hospital had strict instructions NOT to resuscitate. The staff on duty “did not know about” the instructions when asked why they had brought her back. Who could argue with them? And that is for the reader who mentioned that hospitals/doctors only follow instructions! Yeah, right!
Living wills, and DNR prescripts mean nothing, people. Sorry to disappoint. As a nurse who has worked in ICU for years I can attest to the fact that these documents are easily over-ridden by the wishes of the family.
I can also attest to the fact that, with or without the family’s quiet concent, euthanasia is routinely practised, after secret consensus is reached between doctors and nurses caring for patients who are dying to die.
However, because you cowardly people fail to push governments to enact euthanasia legislation we, the healthcare workers, are the ones who don’t sleep at night, having to carry in our consciences forever the deadly decisions we make and deliver.
Bugga all you cowards for expecting us healthcare workers to become your silent, unsanctioned, contract killers!
@ Belle
That is the unfortunate truth.
This country really needs Euthanasia legislation. Working in the state, I routinely have to resuscitate patients with advanced AIDs AND disseminated Tuberculosis. The resources used are astronomical. We are successful 10% of the time. So we make a difference to 10 patients out of a 100. Is it worth it? You can argue it either way depending primarily on whether the patient is a relative or not!
As a doctor in the absence of a living will, I want to go to bed knowing i tried absolutely everything no matter how remote the chance of success was. The entire profession is taught to honour the sanctity of human life, and watching a patient die is a recurring nightmare. Its terribly difficult for a family member, but its usually a once off event that brings some closure. The doctors and nurses deal with this on a daily basis…so one of two things can happen. You either become a cold calculating focussed individual that switches off once you leave the premises, or you wear your heart on your sleeve and get truely involved. They don’t anyone these lessons at a medical school…because there is no correct answer.
PS: please don’t confuse hospital bills with doctor’s bill. Admittedly, some doctors are exorbitant, but have you called out a plumber recently?
Belle, that is very brave of you to admit that euthanasia is routinely practised. I think that many people “know” that in their hearts but won’t admit it. Because we are the cowards, but we also know that no matter how many doors the public bash down euthanasia will never be allowed on our statute books. It is “obscene” and “nobody should play God” – BUT the “theys” who say that will quietly allow healthcare workers to make that quiet decisions for them. And as you say you have to carry it in your conscience. We criticise hospitals and health professionals (I am one) but we all know that we owe an enormous debt of gratitude to people like you who dedicate their lives to this exhausting and often thankless profession.
The key point Gwande makes is that the medical profession does not know when to stop when it comes to treating terminal patients. Instead of helping prepare someone for the inevitability of death (there’s no medical aid rate for that, I regret), they choose instead to bombard dying people with terrible treatments.
“First, do no harm” – Hippocrates.
PS: The FDA is about to withdraw approval for the use of Avastin in treating breast cancer because it makes no difference and costs $100 000 a year per patient. Roche made $8-billion in sales from Avastin in 2009.
Between the doctors and drug companies, just what does informed consent really mean?
I agree with Statedoc. Without a living will, doctors are obliged to do all they can for a patient. In some cases this does involve “palliative radiation.” I am only speaking for the practice of medicine in the public sector which is where I work but these attempts at palliation really are prescribed for patient benefit. It is true that they are not always successful but to forego them is not a decision that can be taken by the doctor alone.
Both doctors and relatives want to ensure that all that can be done for a patient has been done. Unfortunately, this is not always best for the patient because it is pointless prolonging life without ensuring quality of life.