Conscientious objection to physician-assisted dying

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.

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Navigating patients’ “less important” health problems

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?

Bias in the government’s expert panel on assisted dying

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.

 

Ending the “war on cancer”

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.

Dying a “good death”

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.

Arguments for and against physician assisted dying

Here are some of my least and most favorite arguments for and against physician assisted dying, currently being debated by the Canadian Supreme Court. I won’t even bother identifying which quotes I find persuasive and which are nonsense. You can also read my previous article on “Preparing for physician assisted dying”.

Arguments against

Harvey Max Chochinov and Balfour M. Mount:

“It would also appear that autonomy is intoxicating; the more people have, the more it becomes a cultural norm and a perceived entitlement.”

Nicholas Steenhout, director general of Living with Dignity:

“It’s a huge shock to the system to receive a terminal diagnosis and it’s actually quite well known that people go into a depression. At that point it’s basically not really possible to make clear and informed consent.”

Margaret Somerville:

“People are afraid to accept palliative care or necessary pain management because they fear euthanasia. We must be able to reassure them that we will kill their pain, but never intentionally kill them and we can’t do that if euthanasia or assisted suicide are legalized.”

 

Arguments for

Arthur Shafer:

“When an important life choice concerns a private matter and when the individual making that choice is near death and suffering unrelievably then the state should not interfere unless it can prove that interference is necessary to protect vulnerable third parties.”

James Downar:

“My support for PAD is based on an ethic of care, therefore, and the desire to help people achieve the death that they want. I’m not advocating for universal PAD, but universal choice.”

Wanda Morris:

“We do not believe those who speak against legalizing assisted dying are pro-suffering. In supporting a total ban on assisted dying they see life as sacrosanct and are willing to accept that some suffering must inevitably occur as a result. Our priorities differ: at Dying With Dignity Canada, we believe compassion should trump the preservation of life at all cost.”

Andre Picard:

“Choosing to die is not an easy decision, and few people will make that choice; all told, perhaps a couple of hundred each year in a country where there are a quarter of a million annual deaths. But having that choice – that right – should be a given in a democratic society.”

Philip Hebert:

“Serious illness can be a soul-destroying process and it is right to expect that the medical profession consider a request for death from a patient carefully and thoroughly.”

Ken Walker aka Dr. Gifford-Jones:

“I have no problem with those who, for religious, moral or ethical reasons, are opposed to assisted death. They have my blessing to suffer the agonies of painful death as long as they like. But they have no inborn right to say the rest of us are morally corrupt in deciding this is senseless torture.”

 

Preparing for physician assisted dying

Most of the Canadian public is likely not aware that Canada is on the precipice of legally allowing physician assisted dying (PAD). The Quebec legislature has already passed a bill that will take effect in late 2015 to allow doctors to help a patient end his or her life. The Supreme Court of Canada heard a case this week from British Columbia regarding the legality of PAD.

It is apparent that in the very near future, PAD will be a reality in Canada. This post is not about the ethics or morality of this legalization; however, I will be upfront about my bias in that I believe in equal and open access for terminally ill patients to die with dignity, while respecting others’ opinion against “euthanasia” (a term that is being appropriately phased out) for moral, religious, or any other reasons. My opinion is anything but radical as 84% of the Canadian population and 85% of healthcare professionals support PAD. With a large amount of evidence from Europe, Vermont and Oregon showing that assisted dying does not take advantage of vulnerable populations, this decision should (and hopefully will) be guided by the wishes of our society as a whole.

As a side note, can we all please stop saying that all we need is better access to palliative care, and that that is a reason to not legalize PAD? The claim that only 16-30% of Canadians have access to palliative care has been thoroughly debunked, and palliative care has improved in countries and states that have passed laws to allow physician assisted dying. And despite the best palliative care in the world, some patients still suffer debilitating symptoms near the end of life and seek PAD. Of the 32,475 deaths in Oregon in 2012, 85 were via physician assisted dying.

Where do oncologists come into play within the realm of PAD? Due to the sheer incidence of cancer, a large proportion of terminally ill patients are under the care of oncologists. Therefore I believe that we (oncologists), along with our colleagues in palliative care, will need to educate the public on their options regarding end of life care and PAD. We should also take a lead role in helping to educate all other physicians regarding how to navigate this new system that will have significant (and appropriate) checks and balances before patients can pursue PAD.

It is possible that oncologists, particularly in more remote regions, may be called upon to provide assisted dying (I cannot find data from the USA regarding which types of doctors have been providing the prescriptions to facilitate PAD). Oncology-related residency programs will therefore need to provide basic education on the technical and emotional aspects of PAD. Training in fact should be initiated widely across all medical specialties since it will be better for patients who choose PAD to have access locally rather than forcing them to travel or move (along with their families) to another city at the late stages of their illness. When Canada legalizes PAD there should be a national strategy and unifying national law so that we avoid the situation (like in the USA with Oregon) where patients are moving to a new city or state in order to obtain access to PAD.

In the next few weeks, the already contentious debate regarding PAD will reach a climax, since this is a topic that many people feel quite strongly about. What should not be lost amongst the debate is the necessary strategy, training and infrastructure required to provide this service (once legalized) in the most humane way possible.