I asked Canadian doctors and nurses to share with me their thoughts about the issue of unwanted care (aggressive, invasive, often debilitating heath treatments that are imposed on dying patients â€“ frequently when they are senile or unconscious â€“ during their last weeks or months of life).
Many did. And, with the authorsâ€™ permission, I will quote from some of their responses.
Several respondents pointed out that we should be careful to draw comparisons between Canadian and U.S. hospitals. â€œMost [Canadian] physicians I know are working to exhaustion [just] to perform appropriate treatment,â€ wrote Dr. Kevin McDermid, a Langley, B.C. internist. â€œIn the U.S. [on the other hand], where HMO bills private insurance companies and governments fee for service, there are enormous financial incentives to over-treat patients who have coverage (and under-treat patients without coverage).â€
Margriet Wijnen, a veteran clinical neurophysiology technologist, argued that the scourge of unwanted care is caused, in part, by the pressure to perform medical research.
â€œThe great majority of specialists [I have observed over 35 years] were very compassionate, not forcing tests or treatments on patients who were doomed,â€ she wrote. â€œBut if a dying patient suffered from a very rare neurological disease, it sometimes became a different matter. â€˜Academic interestâ€™ and a desire to get published in a medical journal [offered incentives to explore the disease further], even if it was traumatic for the patient to undergo tests without any hope for recovery.â€
But in many cases, I learned, it is the patientâ€™s family members who are pushing hardest for futile treatments. Often, in fact, doctors are the ones urging for palliative care, since they understand the medical and economic consequences of pursuing aggressive, futile treatments.
â€œI have spent countless nights in the Intensive Care Unit (ICU) trying to gently convince families that most interventions we do to critically ill, elderly patients are of little benefit. They will only inflict unnecessary suffering,â€ wrote Jason Weatherald, a fellow of the University of Calgaryâ€™s Division of Respirology. â€œThese pleas often fall on deaf ears. We have been conditioned, as a society, to want to preserve life at all costs. We believe that our family members are â€˜fightersâ€™ and can make it through serious medical emergencies. [As a result], it is often the family members we are treating with heroic measures. Not the patient.
â€œThe truth is that many people of certain ethnic/cultural/religious backgrounds are unwilling to accept the option of doing nothing,â€ he added. â€œPalliative care is often seen by the family as equivalent to â€˜pulling the plug.â€™â€
â€œWe have a curious system of deciding how aggressive we should be with a patient care,â€ Dr. McDermid, cited above, later wrote. â€œWe ask the patient [first], and if he or she is incompetent or too sick, we ask the next of kin, power of attorney or other representative. Although [doctors] can override the decision based on medical futility, they tend not to, for multiple reasons. For one, [doctors] donâ€™t have time to get into a long process with the family. Thereâ€™s also the threat of a complaint (especially a time-consuming complaint involving the College of Physicians and Surgeons) or (though not so much in Canada) a lawsuit. [For instance] I have been threatened by a lawyer (when I was completely exhausted at midnight), to bring his dying [91-year-old] father to the ICU immediately, or else he would â€˜take action.â€™ So I did, and the father died with all the lines and tubes you mentioned [in your article].â€
â€œMost families are reasonable, but very often they want everything done to save their aging and dying relatives,â€ Dr. McDermid elaborated. â€œThere is often a dysfunctional family dynamic [whereby members] do not agree on what should be done. If there is one vehement outlier in the family who wants â€˜everything,â€™ we often acquiesce to that personâ€™s demand. Often, guilt â€” possibly stemming from neglect prior to the onset of a sudden illness â€” plays a major role in the inclination to over-treat.â€
Dr. Travis Carpenter, an internal medicine resident at the University of Toronto, told me that much of the problem is rooted in the fact that patientsâ€™ family members are often unrealistically focused on the hypothetical benefits of aggressive treatment. They are also, however, completely ignorant to the almost-certain costs.
â€œFor elderly patients in the ICU and on the ward, [aggressive end-of-life interventions often require] chemical and physical restraints to provide treatment. These measures can be extremely distressing to the patient and for health care providers,â€ Dr. Carpenter wrote. â€œMultiple procedures, including the insertion of tubes and lines, are painful both immediately and on an ongoing basis. Patients who survive CPR often have immense pain from fractured ribs and other sequelae. Many, if not most, elderly patients who have endured prolonged ICU stays often never leave hospital, or else, end up permanently in nursing homes. These are only a few examples, but they may represent [conditions] patients or families have never seen, nor can fully comprehend before making decisions about themselves or a critically ill loved one.â€
Like Dr. McDermid, Dr. Carpenter notes that the problem frequently is exacerbated by emotional family dynamics â€” something that obviously is beyond the control of a doctor: â€œThe final decisions on these matters are most often left in the hands of families (especially with respect to ICU transfer and intubation/ventilation). A common scenario is when a patient is unable to make his or her own decisions, and an emotionally distressed (understandably so) wife/husband or son/daughter is reluctant to make the decision to pursue palliative or comfort care treatment, [even though] it is likely the most humane and beneficial option for the patient.â€
Jacqueline Campbell, a consultant who advocates for elderly patients in hospitals, has seen this same process play out from the other side of the gurney. As she perceives it, much of the problem arises from the either-or manner in which doctors present the issue to patients. Even if palliative care is clearly the more humane option, no relative wants to be the one who makes that morbid decision.
â€œThe unfortunate fact is that many families actually want the feeding tubes â€” or the operations, the treatments, the tests â€” because doctors feel compelled to offer them. The discussions about alternatives in the treatment of the chronically ill can, frankly, be confusing, and oftentimes a family will opt for inappropriate interventions because they feel they are being forced to choose between life or death for their loved one. While [medical professionals are] often quite thorough in presenting the pros and cons of any treatment, they are no longer the decision-makers they used to be. Now families are required to make decisions on behalf of their ailing kin, though these family members tend to lack the experience to understand the consequences fully. These are discussions that need to take place earlier in life, without a medical crisis looming overhead.â€
In other cases, patientsâ€™ family members make bad end-of-life decisions out of sheer ignorance â€“ often because they have informed themselves with bogus medical information gleaned from the Internet, or else, from â€œalternativeâ€ health practitioners.
â€œA few years ago I had two patients in a nursing home,â€ one doctor told me on condition of anonymity. â€œBoth had suffered disabling strokes. Both were wheelchair-bound and completely dependent for all their activities of daily living. â€˜Patient A,â€™ an elderly woman, had a child who â€” under the guidance of her naturopath â€” became convinced that her motherâ€™s high level of disability and dementia was due to an ongoing condition with her arteries. [She believed] that a surgery to relieve these obstructions would cure her mother of both her disability and dementia and would restore her motherâ€™s independence. She nagged and then threatened me repeatedly to refer her mother to a neurosurgeon and so I finally did. But the neurosurgeon told her exactly what I had been saying: Odds are the mother would either die or suffer a further stroke on the operating table. Even if the surgery was a success, there would be absolutely no difference in the patientâ€™s status post-op. The daughterâ€™s response? She accused me of sending her mother to a quack.â€
The same doctor provided another example: â€œPatient B,â€ an elderly man â€œwho was tended to all day long by his elderly wife and also not-so-young daughter. Their love and devotion was truly touching. Unfortunately, they also believed that if they kept him alive long enough, he would recover from his stroke. Thus, he was kept â€˜full codeâ€™ (which means that in the event of a life-threatening event, everything must be done to keep the patient alive). When he had another massive stroke and wound up in the local ICU, they refused to change their minds. The man stayed in that ICU bed for eight months despite repeated pleas from the staff to the family. [The wife and daughter] kept insisting that â€œdad might still recover.â€
But there are good-news stories, too, such as the woman who weâ€™ll call Patient C â€“ â€œa patient in the ER, a woman in her 90â€™s, who had woken up in the middle of the night and couldnâ€™t move her left side. The nursing home staff immediately sent her in and I arranged a CT scan that showed a large bleed in her brain,â€ the doctor told me. â€œAs bad as regular strokes are, bleeds are far worse. This one suggested that unless she had an operation, the patient would die imminently. However, even with an operation, she would remain unconscious and on a ventilator. As we always do, the nurses and I checked her code status on the nursing home transfer information sheet and were disheartened to see it said â€˜full code.â€™ Now what could I do? Legally, I had no choice but to follow the patientâ€™s wishes unless a legal power of attorney contradicts them. We did have the phone number of her niece (she had no children) who jumped in the car and arrived quickly in the ER. At this point, the patient was breathing in a shallow fashion, and a decision had to be made as to whether to put her on the ventilator. So I sat down quickly with the niece, explained the situation and asked â€˜Would your aunt want us to do this?â€™ Firmly, she said â€˜No, she wouldnâ€™t. Let her die peacefully.â€™ And we did. We gave her oxygen, mild sedatives and a private room. A few hours later, with her niece holding her hand, she passed away. So sometimes we do the right thing.â€
This was not the only story of this kind that I heard. Various respondents wrote in to say that death can be managed with minimal pain and discomfort â€” while still upholding the bonds and affections between family members â€” by adhering to certain conditions: (1) Patients must let their intentions be known beforehand, (2) relatives must manage their expectations and emotions within the bounds of medical science, and educate themselves about the negative impacts of aggressive interventions, and (3) doctors must make sensible decisions about when to stop trying to extend human life.
A letter-writer from Saskatoon, for instance, told me: â€œMy wife passed away at the age of 33 from cancer four-and-a-half years ago. [After consulting with us,] the doctor gave my wife a designation that prevented heroic measures. That was what she wanted: as high a quality of life as she could for as long as she could, rather than a few more weeks in intensive care. In her last days, there was some discussion of surgery to repair internal bleeding, though she refused. The surgery would have been extensive, the situation was likely to recur in short order and there was a significant chance that my wife would not have survived the operation. I think that the way everything went down with the doctor, the nurses on the palliative care unit and the home care nurses was as it should be in a situation like that.â€
â€œThe staff on palliative care units are excellent,â€ he added. â€œIn the late stages of life, particularly when someone has a painful illness, [patients] are often prescribed morphine or the more powerful hydromorphine. Since life expectancy at that time is very short, there is no clinical reason to be overly cautious about addiction to morphine. As a result, patients are often given [freedom and flexibility] with respect to the amount of painkiller they get. There are IV pumps with self-administration buttons that can be pressed by the patient, or else, nurses will simply ask if the patient wants some more. (Of course, [nurses usually also offer] explanations about the dangers of taking too much morphine, including a caution that taking more than X amount may lower breathing to the point where a patient peacefully pass away).â€
Lorri Chmilar wrote: â€œI have been a nurse for over 30 years, intensive care, emerg, geriatric rehab, psychogeriatrics; you name it, I probably did it. I have seen horrible extended dying where I dreaded going to work, arguing repeatedly for my elderly patientsâ€™ right to die. And yet I have seen beautiful deaths with families and patients on terms of acceptance and peace â€” even hugs and smiles at a death well done. Our doctors have the same good hearts, but have been trained to see disease and death as a war to be fought.â€
â€œIn emergency, I once had a lovely elderly lady with full facilities. She knew she had a huge aortic aneurysm that was about to burst. She told us â€˜let me go, I am ready.â€™ There was no time for paperwork. When it did burst, a young doc called a code, started CPR, and called for blood. We literally had to take his hands off her, reminding him that we did not have the surgical setup to even attempt a repair. It took him time to realize the futility of his actions, never mind [to gain an appreciation for] the expressed wishes of the patient. We must continue to advocate for our patients. To educate families. Please, everyone, talk to your families. Say what you want, and ensure that your family doctor knows it.â€
Louise Coumans offered a similar story in regards to her fatherâ€™s death at the Health Sciences Centre in London, Ont. â€œTwo very young doctors examined my dad,â€ she reported. â€œThe one in charge asked him if he wanted to hear the diagnosis, or if I should be told. Dad said I should be told, so I was taken to a private office where the doctor told me that he had â€˜days to weeks.â€™ The two young doctors sat while I wept and rambled on about what an extraordinary man my dad was. It was as if they had no more important concerns [than to listen to me]. Dad received excellent care by the doctors and the nurses. There was no question of forcing any treatment on him. He had stomach cancer, and we were told chemotherapy at his age â€“ just shy of his 86th birthday â€“ would be brutal. When dad stopped eating and drinking, it was accepted. My brothers and I were with dad around the clock. We were allowed to sleep in the room with him and to come and go as we pleased â€“ as were all of our family. I even lay in the bed with my arms around dad as the nurses worked around me, assuring me it was fine. We had put enlarged photos of dad on the walls, and we had music playing all the time. When dad died â€“ listening to Bing Crosby â€“ the young doctor, whose name escapes me â€“ put his arms around me. Months later, when I was Christmas shopping, he recognized me at the mall and asked how we all were â€¦ Dad died in quiet comfort with dignity and respect â€“ accompanied by â€˜Moonlight Becomes You,â€™ and mum telling a funny story about their courtship. It couldnâ€™t have been a kinder death.â€
How can we help secure a â€œkinder deathâ€ for ourselves and our loved ones? One of the most helpful notes in that regard came from Dr. Paul Mackey, an anesthetist from Fort St. John, B.C. â€œMy comment would be that one of the better ways to ensure your end-of-life care is to have a family physician with whom you actually have a relationship â€“ someone who â€˜knowsâ€™ you and your wishes and who is involved in your end-of-life care,â€ he wrote. â€œUnfortunately, not all patients have that luxury, either because they donâ€™t have family doctors, or because their family physicians are unable to provide in-hospital care. As a rural family physician, it has been my privilege to be with many patients as they make their final â€˜journeys.â€™ Unfortunately, many doctors are trained in ultra-specialized centres where the imperative too often is â€˜Donâ€™t stand there â€” do something.â€™ Indeed, there are times when just sitting there and holding a hand should be all that is done.â€
â€œFor me as a family physician the difficult part is not necessarily having the discussion about dying (though patients all too frequently joke â€˜Are you giving up on me?â€™), but actually adequately covering all the necessary nuances of end of life wishes,â€ he added. â€œMy suggestion is that we all should download and fill out the My Voice Handbook, developed as part of the BC End of Life Practice Support Module, and make sure our family doctors and significant others have copies. As I say to my patients, â€˜If you donâ€™t tell me what you want me to do (or not to do) how am I going to know what to do when the time comes?â€™â€
Yes, I heard stories from people about how their relativesâ€™ end-of-life wishes were ignored by relatives or caregivers for one reason or another. But I also heard stories from people who described how these instructions made all the difference. Jim Reinhart or Kitchener, Ont., for instance, told me: â€œIn 1997, I was POA [power of attorney] for an uncle who had heart disease and cancer. Within days of his death, a doctor advised that the amputation of his legs would assist his circulation. I declined, relying on his â€˜no heroic measuresâ€™ clause in his will. He died quietly and with dignity and, I hope, in minimal pain.â€
Perhaps the most useful, practical advice was in a letter I got from one Colin Macpherson of Maple Ridge, B.C. He urged Canadians to take responsibility for their own end-of-life medical care by creating a living will in advance.
â€œIt is senseless to criticize the medical systems or doctors for the problem,â€ he argued, â€œbecause in most cases, they can only do what some â€˜responsibleâ€™ person instructs them to do. If people are not responsible for their own lives â€“ simply drifting around like silly sheep waiting for whatever comes along â€“ they must suffer the consequences.â€
â€œIn B.C., we have something called a Representation Agreement, which consists of a combination of living will and power of attorney, and is about the only intelligent legacy of the last NDP government. My wife and I drew ours up more than a decade ago, when we were in our late 60â€™s, and have seen no reason to change them since. We included the following â€˜Specific Wishesâ€™: (1) If I am diagnosed with a fatal illness or condition for which I am not a candidate for treatment, I wish to receive palliative care only; and (2) Artificial means of life support, including tube-feeding, must not be continued for a period of time in excess of 30 consecutive days.â€
â€œHave you drawn up such a document?â€ Mr. Macpherson pointedly asked me. â€œHave your parents or other elderly relatives done so?â€
Sadly, the answer is no. But I will. And you should, too.
â€“ Jonathan Kay is managing editor for Comment at the National Post, and a Fellow at the Foundation for Defense of Democracies in Washington, D.C.