The legislation regarding medical aid in dying (Bill C-14) was introduced by the federal government this week and to no one’s surprise has caused outrage from both those who support and those who oppose physician-assisted dying. One particular article from the Ottawa Citizen about the Catholic Health Alliance of Canada’s concern that the legislation didn’t do enough to specifically protect conscientious objectors is particularly galling. This group reiterates their belief that “referring someone who would assist in death would make them complicit” and argues that doctors should in no way be forced to refer patients on. I have stated my beliefs before that doctors refusing to even make a referral is a selfish act placing physicians own beliefs ahead of the real needs of sick and vulnerable patients. But this article got me to thinking about how a conversation would go between a dying patient and a physician that the Catholic Health Alliance is trying to protect.
Patient: Doctor, you have taken care of me for the last six years; I’m suffering from intractable pain and you just told me I only have a few weeks left to live. I would like to talk about medical aid in dying that I heard was just legalized.
Doctor: Sorry I can’t help you.
Patient: But it is legal now, right? I meet all the criteria for getting a prescription to allow myself to peacefully pass away and end my suffering.
Doctor: You do, but I’m sorry I disagree with the whole concept of a physician assisted death.
Patient: Ok then, can you help me find another doctor who could discuss it with me?
Doctor: No I can’t do that either.
Patient: Why not?
Doctor: Referring you to someone else would be just as bad as me writing the prescription myself. And my conscience won’t allow me to do that.
Patient: But you get paid in essence by the government don’t you? And the government made this a legal medical treatment?
Doctor: Yes, but I have the right to refuse to help you based on my own beliefs.
Patient: Can I please talk to another doctor about this?
Doctor: Go ahead.
Patient: Who would that be?
Doctor: I am not at liberty to say.
Patient: Is there an agency or service you can point me to?
Doctor: Sorry, I can’t.
Luckily, it sounds like a centralized database of physicians willing to provide medical aid in dying will be created in Canada to connect patients who are abandoned by their physicians. I would hope all doctors would be reasonable enough to at the least provide a phone number or website where patients could achieve timely access to a willing provider. The medical community is moving more and more towards patient-centered care; legislation that specifically allows doctors to refuse to refer patients for any medical intervention including medical aid in dying would be an unfortunate setback.
The debate about the overuse of CT scans and potential harms from the resulting ionizing radiation came up again this week with a well-written and balanced article in The Washington Post called “Should you worry about the radiation from CT scans?” (the painting credited to Kai Ti Hsu in the article is worth the click alone). I agree that particularly for young and/or healthy people, doctors should work to minimize the number of CT scans. But this article reminded me of a situation I (and I’m sure all oncologists) encounter regularly: the patient with advanced cancer who refuses a CT scan because of their fear about the harmful side effects they have read about in articles like the one linked above. I then find myself in the predicament of finding a compassionate way to explain to my patient that the 0.05% (1 in 2,000) additional risk of a second cancer 20 years down the road is not really a concern for someone who perhaps has a life expectancy of 3-6 months. It’s also amusing to me when someone states they will absolutely not get another CT scan while at the same time agreeing to a course of radiation to treat their tumor; I can explain that the radiation treatment is 7,000 times the dose of a CT scan but still some people have the fixed idea that CT scans are evil.
A similar situation happens when cancer patients are admitted to hospital near the end of life, with days to weeks left to live. Occasionally the patient or their family will want to intensively monitor their blood pressure or sugar levels (if they are diabetic) and insist on changes to medications if their levels are not where they should be. Again, I used to personally struggle to find a way to gently explain that high blood pressure or high sugars are not a priority at this stage of life. I finally realized that what this situation actually represents is perhaps the last aspect of a person’s life that they or their family can control. Their cancer has progressed despite months or years of tough treatments. The dying process is not something that people feel they have control over, at least not until physician-assisted dying becomes legal and available in Canada. But excellent glucose control in an 80-year old man who has had diabetes for 30 years is a source of pride and something that can still be managed despite everything else going on. So I have adjusted my attitude; I advise patients that we can be more lenient with the numbers but assess how important it is to them to feel like they can still actively manage that aspect of their health. And if their numbers are still important to them, I am happy to try medication adjustments despite the obvious lack of any long term benefit.
I believe that this feeling of control is also what leads some people to refuse opioids (like codeine or morphine) despite severe cancer-related pain because of their fear of becoming “addicted to painkillers”. While recognizing that we are in the midst of an opioid addiction crisis, I have never found the courage (or an appropriate way) to tell a patient “It’s ok if you become addicted in order to be comfortable for the last few days/weeks/months of your life”. Does anyone else have an approach to this situation?
Imagine that I lived in a place, let’s call it Neverland, where prohibition (on alcohol) was kept in place until today. The government fully supported this ongoing ban. However, Neverland’s Supreme Court just declared that the law against drinking alcohol infringed on Neverland’s constitution. The government decided to make me the head of a panel to provide suggestions as what our alcohol laws should be. Now in this fictional world, my family was killed by a drunk driver and I have spent my entire life dedicated to keeping alcohol illegal and persuading the public about the evils of drinking. What would I suggest to the government? I would probably ask for the minimum cost of an alcoholic beverage be $3,000 and that the age of majority to purchase alcohol be 125. If my suggestions were put in place, alcohol would be legal, but not available in any practical sense.
This is exactly the scenario we now face with respect to Canada’s Supreme Court’s unanimous decision that the laws against physician-assisted dying (PAD) were no longer valid. The federal government was given one year (from early February 2015) to come up with suitable laws to allow for assisted dying. The Conservatives did absolutely nothing for five months, and then on Friday announced a three-person panel to advise them on issues surrounding legalization of PAD. Unfortunately, two of the three members of the panel, Dr. Harvey Chochinov and Ms. Catherine Frazee, are outspoken critics who oppose the legalization of PAD; so much so that they were two of the federal government’s expert witnesses when the government argued at the Supreme Court that PAD should remain illegal. There is already concern about impartiality of the panel (see here and here). The president of the Canadian Medical Association is quoted as saying “Despite their well-established views on these issues, the CMA is confident that the panel, chaired by renowned Canadian palliative care physician Dr. Harvey Max Chochinov, will undertake a balanced and comprehensive consultation”.
I must ask, why did the federal government not appoint to the panel other experts in palliative care and medical ethics (and there are plenty) who are not already on the record as staunch opponents to PAD? I think it is safe to assume that those who have never considered supporting PAD would not have have spent much time considering the best way to provide PAD for our population. Does anyone honestly believe that people with such strong views against PAD would do anything but suggest the most restrictive legal application of it?
To be clear, I fully support Dr. Chochinov and Ms. Frazee’s right to oppose assisted dying. Dr. Chochinov is a strong proponent of increasing the availability of palliative care, something I agree with completely. I, however, do not see why legalized PAD cannot be achieved while increasing palliative care support in Canada simultaneously. There are three states in the USA that allow PAD: Oregon, Vermont, and Washington. Now look at the rankings for access to palliative care among all US states. The same pattern holds true in Europe. Ms. Frazee states that there can be dignity in all states of life, disability notwithstanding: “a vital social ecology is gravely threatened by policies that accept uncritically the proposition that severe physical incapacity strips life of value, dignity and purpose“. Those who favor legalizing PAD do not argue that disability or impairment leads to loss of dignity (and therefore the possible request for medical aid in dying). I would never presume to determine another human’s sense of dignity. To me, dignity is 100% defined by each person’s self. One of the core issues of permissive PAD is the autonomy that all patients deserve, for medical decisions including those near the end of life. Yet the head of the government’s panel (Dr. Chochinov) has written “It would also appear that autonomy is intoxicating; the more people have, the more it becomes a cultural norm and a perceived entitlement.”
The majority of the Canadian public (84%) support legalized physician-assisted dying. Not in a theoretical way, but in a way that would allow for real access should it be needed. The Supreme Court of Canada unanimously agreed. Now we wait and hope that the federal government doesn’t deny the wishes of its electorate. Inevitably I fear we are headed towards a more drawn out legal battle.
Notice where I put the quotation marks in the title. This post is not about the state of the union of cancer research. It is about an article published in Nature last week by Colin Macilwain that argues we need to move beyond the ideal of fighting a “war on cancer” and build a more constructive approach to cancer care. I agree wholeheartedly with Dr. Macilwain.
Cancer is not one disease. It is hundreds of diseases from breast cancer to prostate cancer to blood-borne malignancies like leukemia. These diseases are as different from each other as coronary artery disease is from atrial fibrillation. Yet no one argues we need to fight a unified “war against heart disease”. I follow the cancer research community fairly closely, and I am not aware of a single researcher trying to find a unified cure for cancer. We take small steps at a time with occasional paradigm-altering breakthroughs, such as the development of Imatinib (Gleevec) for chronic myelogenous leukemia (CML). Instead of holding out hope for a single “cure” for cancer, let’s talk about what can be done.
In the immediate future, several ideas, if put into action by the government (which for me is the Ontario provincial and Canadian federal governments), could significantly help cancer patients. First, all oral cancer chemotherapy pills should be provincially funded instead of bankrupting Ontarians by making them pay out pocket thousands of dollars a month (see here for more). We need a clear plan to expand and provide access to palliative care for all patients who are near the end of life. And for those suffering terribly despite palliative care, the federal government needs to get their act together and come up with sensible laws to provide access to physician-assisted dying (the majority of the small number of patients who seek assistance in dying are people with cancer). Finally, although not related to any government action, the medical community and the media need to stop using cancer as war metaphors. It is insulting to people who succumb to the disease when it is said (or written) that someone else “successfully battled cancer”. The outcomes of the disease are not related to how “hard” people try to “fight” the disease.
In the intermediate future, we need to continue the expansion of regional cancer centres in order to provide local access to surgical, chemotherapy and radiation treatments. We need to continue to encourage innovation and trials of novel therapies in an attempt to attain significant changes in cancer prevention or treatment. One recent example from the Princess Margaret Cancer Centre (where I train) is a study that showed that pre-operative radiotherapy more than doubled the survival rate (from 32% to 72%) for mesothelioma. What we do NOT need to do is waste over $3 million (and give false hope to patients) in studying “naturopathic” or “integrative” oncology. I’ll tell you right now (free of charge): acupuncture, massage, and intravenous vitamin C does not help cure cancer.
Finally, in the long term, we need to focus research efforts (and funding) on the types of cancers with the worst outcomes (pancreatic, lung, ovarian just to name a few). Prevention of these cancers would be wonderful but a more realistic goal is the early detection of these highly deadly diseases. We need to improve how we detect cancers that already have screening tests (like breast and prostate) by better determining who truly needs treatment and who doesn’t (“active surveillance”) as well as how aggressive we need to treat each individual.
These are just a few ideas, some of which I hope to expand on (through writing or my actual research) in the future. But for now, let’s stop thinking of cancer as a “war” that needs to be fought and think about how the medical community can best support people afflicted with this terrible disease.
I was quite happy to read last week that the CPSO updated its policy to now state that doctors moral or religious convictions cannot impede patient’s access to care, and that doctors could face disciplinary action if they refuse to at least refer patients on. I have no problem with doctors refusing care in certain instances, as long as they ensure the patient gets to see another physician in a reasonable amount of time who is willing to provide appropriate access.
The ethics behind such a situation are interesting to consider. The core principles of medical ethics (autonomy, beneficence, non-maleficence, and justice) are widely accepted and generally hold across societies and cultures. But the rest of medical ethics, the shades of gray, are largely influenced by the moral standards of the society in which a particular doctor practices. That is why I believe that it is more important for patients to have access to medical standard of care than it is to “protect” doctors who have moral or religious objections.
The primary example that is always used in this argument is that of family or walk-in doctors refusing to prescribe oral contraceptive pills (OCP), which has happened recently in Calgary and Ottawa. Personally, I can’t believe that in 2015 there are Canadian trained doctors who refuse to dispense OCP even if their religious upbringing has taught them it is somehow “wrong”. But the previous CPSO policy of allowing doctors to refuse treatment *and* refuse to refer patients on sets a bad standard that places already vulnerable patients in a precarious situation. For example, what should happen if a pediatrician refuses to provide care for a baby girl because her parents are a single-sex female couple? Sounds like a disgusting situation that is made up, right? Nope, it happened just last month (in the US, but still). Under the CPSO’s prior policy, the pediatrician has the full right to refuse to care for the baby, and has no obligation to find another pediatrician who will. And what if that baby lived in a remote area with only one pediatrician in town?
I fear that the new policy doesn’t go far enough, as many patients will not be aware that their doctor must provide an appropriate referral; they also likely won’t know that this is now a situation whereby a complaint could lead to disciplinary action. I have argued before (in reference to physician assisted dying) that medical laws and practice guidelines in Canada should be dictated by the wishes of the majority of Canadians, not by the majority of doctors. That is why the 92% of the Canadian public who favor this new policy should outweigh the “vast majority” of doctors who oppose it. Physicians are employed to treat their patients, not to assuage their own moral or religious baggage.
Like many others, I was quite surprised to hear this week that the Dean of the University of Toronto’s Faculty of Pharmacy, Dr. Heather Boon, was organizing an RCT evaluating homeopathy in the treatment of ADHD. I don’t need to include any links explaining why homeopathy is complete quackery, simple google it. Dr. Boon lectured my medical school class numerous times over my four years at the University of Toronto; she was an excellent teacher and was reasonably skeptical regarding the limited evidence within the field of complementary and alternative medicine (CAM).
Dr. Boon wrote last fall that universities are the best places to get “answers on integrative medicine”. While this is technically true, it doesn’t mean that time and money should actually be spent by academic researchers on disproving every claim regarding natural or homeopathic remedies. Before I could get this post up, Dr. Mario Elia wrote an excellent rebuttal arguing that CAM research is like throwing good money down the well. Dr. Elia explains that with limited funding for research, the scientific community should really focus on treatments that have some shred of scientific plausibility.
There is one other point I wanted to make in arguing that this type of research is a waste of time and money. Whose practice is going to change based on the outcome of this study, or of studies of other, (slightly) more scientifically plausible, natural remedies? Those in the medical community are in no way going to believe a positive outcome, particularly for anything with the word “homeopath” associated with it. And those who peddle this nonsense, and most of those who already believe in it, are not going to change their minds regardless of how well an RCT is run. Homeopaths make money selling their magic water, and will find some kind of excuse to ignore any negative studies. And some (or most) of their customers have this psychology of distrust of the medical community, and their conspiracy-type thinking will not be swayed by evidence that goes contrary to their fixed beliefs (similar to anti-vaxxers).
If a CAM remedy is shown to have some modest benefit for a disease or symptom, then great; that “alternative medicine” will forever be known as simply “medicine” and will have uptake within the world of healthcare. But I am already dreading the first university-sponsored positive study regarding anything outlandish (like natural herbs to treat cancer, or again, anything homeopathic). Because here is what will happen: backlash from the medical community will expose how and why the results are invalid. And the backlash to the backlash from those who practice and preach CAM will further entrench their fixed beliefs. And in an attempt to take one step forward, we will have taken two steps back.
I cannot help but resist posting my own thoughts on the debate spurred by Dr. Richard Smith’s BMJ article “Dying of cancer is the best death”. As I read Dr. Smith’s post I found myself nodding, agreeing that death by cancer was preferable to sudden death, organ failure, or dementia. This, despite a lifetime history of always stating that I would prefer a sudden death in my sleep. This new “preference”, however, was subconsciously tied to the vision of myself or one of my patients as an elderly man having lived a long and fulfilling life.
Then I read an excellent rebuttal from Marie Ennis-O’Connor, “Is dying of cancer really the best way to die?”. I was brought back to the reality that although some cancer patients have excellent palliative care and a comfortable decline towards death, a large number of cancer patients are not able to be kept comfortable and suffer tremendously. Also, Marie points out younger patients (such as mothers of young children) would never choose cancer as a means of death. I agree, but I don’t think it relates to age; any person who is nowhere near ready to die and still has long term goals in life has no good option when it comes to their means of dying.
Finally, @cancergeek posted his thoughts about “The choice in dying”. Yet again I was brought back to the cold reality that none of us get to choose the cause of our death; we only get to choose how we react to it. I was struck by the eloquence of his statement “[the] physical body withers away…in the struggle between taking their last breath in life and their first breath in death”. I have to disagree though with his statement that “Physicians romanticize their ability to heal, to help, to shelter their patients from the reality that we all die”. I believe physicians are more realistic about the chances of treatment than our patients, but that the public perception is that medicine has advanced to the point where doctors can fix anything, and this has led to an increasing demand for likely futile therapies in patients with advanced disease.
No one gets to choose what takes their life. But they can choose the
1. “How”: how to live their life with a terminal illness
2. “Where”: where to live their final days and where they die
3. “Who”: who to spend their remaining time with
4. “When”: in places where physician-assisted dying is available, patients gain the autonomy (should they choose) to decide when they die
These choices are best made when patients are well informed and realistic regarding their prognosis and the likely progression of their disease. And that is why doctors need to get better at talking about end of life decisions, at an earlier stage of patients’ illness. The stigma around discussing death needs to be lifted to improve end-of-life care for all.