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 芒鈧 frequently when they are senile or unconscious 芒鈧 during their last weeks or months of life).
Many did. And, with the authors芒鈧劉 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. 芒鈧揗ost [Canadian] physicians I know are working to exhaustion [just] to perform appropriate treatment,芒鈧 wrote Dr. Kevin McDermid, a 91原创, B.C. internist. 芒鈧揑n 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).芒鈧
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.
芒鈧揟he great majority of specialists [I have observed over 35 years] were very compassionate, not forcing tests or treatments on patients who were doomed,芒鈧 she wrote. 芒鈧揃ut if a dying patient suffered from a very rare neurological disease, it sometimes became a different matter. 芒鈧淎cademic interest芒鈧劉 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.芒鈧
But in many cases, I learned, it is the patient芒鈧劉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.
芒鈧揑 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,芒鈧 wrote Jason Weatherald, a fellow of the University of Calgary芒鈧劉s Division of Respirology. 芒鈧揟hese 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 芒鈧渇ighters芒鈧劉 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.
芒鈧揟he truth is that many people of certain ethnic/cultural/religious backgrounds are unwilling to accept the option of doing nothing,芒鈧 he added. 芒鈧揚alliative care is often seen by the family as equivalent to 芒鈧減ulling the plug.芒鈧劉芒鈧
芒鈧揥e have a curious system of deciding how aggressive we should be with a patient care,芒鈧 Dr. McDermid, cited above, later wrote. 芒鈧揥e 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] don芒鈧劉t have time to get into a long process with the family. There芒鈧劉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 芒鈧渢ake action.芒鈧劉 So I did, and the father died with all the lines and tubes you mentioned [in your article].芒鈧
芒鈧揗ost families are reasonable, but very often they want everything done to save their aging and dying relatives,芒鈧 Dr. McDermid elaborated. 芒鈧揟here 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 芒鈧渆verything,芒鈧劉 we often acquiesce to that person芒鈧劉s demand. Often, guilt 芒鈧 possibly stemming from neglect prior to the onset of a sudden illness 芒鈧 plays a major role in the inclination to over-treat.芒鈧
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 patients芒鈧劉 family members are often unrealistically focused on the hypothetical benefits of aggressive treatment. They are also, however, completely ignorant to the almost-certain costs.
芒鈧揊or 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,芒鈧 Dr. Carpenter wrote. 芒鈧揗ultiple 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.芒鈧
Like Dr. McDermid, Dr. Carpenter notes that the problem frequently is exacerbated by emotional family dynamics 芒鈧 something that obviously is beyond the control of a doctor: 芒鈧揟he 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.芒鈧
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.
芒鈧揟he unfortunate fact is that many families actually want the feeding tubes 芒鈧 or the operations, the treatments, the tests 芒鈧 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.芒鈧
In other cases, patients芒鈧劉 family members make bad end-of-life decisions out of sheer ignorance 芒鈧 often because they have informed themselves with bogus medical information gleaned from the Internet, or else, from 芒鈧揳lternative芒鈧 health practitioners.
芒鈧揂 few years ago I had two patients in a nursing home,芒鈧 one doctor told me on condition of anonymity. 芒鈧揃oth had suffered disabling strokes. Both were wheelchair-bound and completely dependent for all their activities of daily living. 芒鈧淧atient A,芒鈧劉 an elderly woman, had a child who 芒鈧 under the guidance of her naturopath 芒鈧 became convinced that her mother芒鈧劉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 mother芒鈧劉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 patient芒鈧劉s status post-op. The daughter芒鈧劉s response? She accused me of sending her mother to a quack.芒鈧
The same doctor provided another example: 芒鈧揚atient B,芒鈧 an elderly man 芒鈧搘ho 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 芒鈧渇ull code芒鈧劉 (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 芒鈧揹ad might still recover.芒鈧
But there are good-news stories, too, such as the woman who we芒鈧劉ll call Patient C 芒鈧 芒鈧揳 patient in the ER, a woman in her 90芒鈧劉s, who had woken up in the middle of the night and couldn芒鈧劉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,芒鈧 the doctor told me. 芒鈧揂s 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 芒鈧渇ull code.芒鈧劉 Now what could I do? Legally, I had no choice but to follow the patient芒鈧劉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 芒鈧淲ould your aunt want us to do this?芒鈧劉 Firmly, she said 芒鈧淣o, she wouldn芒鈧劉t. Let her die peacefully.芒鈧劉 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.芒鈧
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 芒鈧 while still upholding the bonds and affections between family members 芒鈧 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: 芒鈧揗y 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.芒鈧
芒鈧揟he staff on palliative care units are excellent,芒鈧 he added. 芒鈧揑n 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).芒鈧
Lorri Chmilar wrote: 芒鈧揑 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 patients芒鈧劉 right to die. And yet I have seen beautiful deaths with families and patients on terms of acceptance and peace 芒鈧 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.芒鈧
芒鈧揑n 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 芒鈧渓et me go, I am ready.芒鈧劉 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.芒鈧
Louise Coumans offered a similar story in regards to her father芒鈧劉s death at the Health Sciences Centre in London, Ont. 芒鈧揟wo very young doctors examined my dad,芒鈧 she reported. 芒鈧揟he 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 芒鈧渄ays to weeks.芒鈧劉 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 芒鈧 just shy of his 86th birthday 芒鈧 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 芒鈧 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 芒鈧 listening to Bing Crosby 芒鈧 the young doctor, whose name escapes me 芒鈧 put his arms around me. Months later, when I was Christmas shopping, he recognized me at the mall and asked how we all were 芒鈧 Dad died in quiet comfort with dignity and respect 芒鈧 accompanied by 芒鈧淢oonlight Becomes You,芒鈧劉 and mum telling a funny story about their courtship. It couldn芒鈧劉t have been a kinder death.芒鈧
How can we help secure a 芒鈧搆inder death芒鈧 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. 芒鈧揗y 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 芒鈧 someone who 芒鈧渒nows芒鈧劉 you and your wishes and who is involved in your end-of-life care,芒鈧 he wrote. 芒鈧揢nfortunately, not all patients have that luxury, either because they don芒鈧劉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 芒鈧渏ourneys.芒鈧劉 Unfortunately, many doctors are trained in ultra-specialized centres where the imperative too often is 芒鈧淒on芒鈧劉t stand there 芒鈧 do something.芒鈧劉 Indeed, there are times when just sitting there and holding a hand should be all that is done.芒鈧
芒鈧揊or me as a family physician the difficult part is not necessarily having the discussion about dying (though patients all too frequently joke 芒鈧淎re you giving up on me?芒鈧劉), but actually adequately covering all the necessary nuances of end of life wishes,芒鈧 he added. 芒鈧揗y 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, 芒鈧淚f you don芒鈧劉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?芒鈧劉芒鈧
Yes, I heard stories from people about how their relatives芒鈧劉 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: 芒鈧揑n 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 芒鈧渘o heroic measures芒鈧劉 clause in his will. He died quietly and with dignity and, I hope, in minimal pain.芒鈧
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.
芒鈧揑t is senseless to criticize the medical systems or doctors for the problem,芒鈧 he argued, 芒鈧揵ecause in most cases, they can only do what some 芒鈧渞esponsible芒鈧劉 person instructs them to do. If people are not responsible for their own lives 芒鈧 simply drifting around like silly sheep waiting for whatever comes along 芒鈧 they must suffer the consequences.芒鈧
芒鈧揑n 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 60芒鈧劉s, and have seen no reason to change them since. We included the following 芒鈧淪pecific Wishes芒鈧劉: (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.芒鈧
芒鈧揌ave you drawn up such a document?芒鈧 Mr. Macpherson pointedly asked me. 芒鈧揌ave your parents or other elderly relatives done so?芒鈧
Sadly, the answer is no. But I will. And you should, too.
芒鈧 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.
