Parents’ rights to refuse treatment for their children

A short post today about the situation all over the news recently where a First Nations’ woman pulled her daughter out of chemotherapy to pursue traditional Aboriginal remedies. I vehemently disagree with the judge’s decision to allow Aboriginal parents to risk their children’s lives in such a way. This has been written about a lot recently, but my sentiments are best echoed by Andre Picard in the Globe & Mail who wrote:

An 11-year-old girl has been condemned to die. A second will likely follow suit. And then how many more? How does anyone dare to call this a victory?

I go back to the principle that what should be considered ethical and just is based on the accepted norms of society. In some countries, female genital mutilation is considered acceptable; in Canada, it clearly is not. Should we allow parents to pursue this horrific practice in Canada if they claim that this is their tradition and they should have the autonomy to do as they wish when it comes to their kids? I would argue the recent decision in Hamilton sets a poor precedent where autonomy will be considered sacrosanct and we will lose some of our ability to protect children.

I also feel the need to comment on some excepts from another article written on Friday about the situation.

The doctors at McMaster did not prevent her from [using traditional methods]. But, she said, they wanted to know what was in the treatments she was administering – something D.H. said she took as a subtle message that the native remedies were frowned upon.

So this mother would prefer the oncologists be willfully ignorant of what is going into their patient’s body, and not to care about or monitor for potentially harmful interactions between the natural remedies and chemotherapy? This is ignorance at its worst.

And, although her daughter was allowed to participate in a First Nations healing ceremony at the hospital, said D.H., “right after our ceremony was done, somebody told me the nurse turned to them and said, ‘She’s all better now, right?’” The sarcastic comment helped persuade D.H. to end the chemotherapy, which was supposed to have continued for another two years.

Here is the anecdote I had assumed existed from the start. And it goes to show that all healthcare practitioners need to be culturally sensitive and aware. Is this an overreaction by the mother? Yes. But perhaps this entire nightmare could have been avoided if a negative comment like the one above had never been uttered.

The decision to rely on the treatments of her ancestors was not made solely because she does not want to watch her daughter wrestle with the miserable side effects of chemotherapy, D.H. said. Rather, it is because she believes it will work.

How is this place in any way related to treatments of First Nations ancestors?

“I have never said I wrote it off,” said D.H. “Right from the beginning, I said this is what I am going to do. If it ever comes to where she’s not responding any more, I would consider chemotherapy. I always have to say I would not watch my daughter perish. Common sense prevails.”

Well, at least a little bit of common sense. I just hope that when she finally decides to go back to conventional chemotherapy, it isn’t too late.

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Encouraging the ePatient revolution

I have written previously in the CMAJ that the medical community should be careful in using patient satisfaction scores as a metric to determine the quality of health care, as the most highly satisfied patients use the most resources and have the highest mortality. I am now starting to appreciate what medical professionals and hospitals should be doing instead of having all patients rate their satisfaction on a 0-10 scale: we need to seek out highly motivated people to join the ePatient revolution to educate and advocate for other people with whom they share a condition.

The best definition of an “ePatient” that I have seen is from the Stanford Medicine X ePatient Program:

1. A specialist and expert who is highly educated in his or her own medical conditions and who uses information technologies (e.g., Internet tools, social networks, self-tracking tools) in managing their health, learning from and teaching others. 2. An educator and role model for other patients and health care stakeholders

The Stanford program, which I learned about via Marie Ennis O-Connor (an influential writer on social media in healthcare and an ePatient herself), runs a conference to help ePatients advance their individual advocacy efforts.

It is encouraging to see multiple “patients as advocates” groups beginning to influence policy: The Patient-Centered Outcomes Research Institute (PCORI) and the Beryl Institute are two examples. Two ePatients, Dawn Richards and Zal Press, have made an excellent argument for the Ontario government to focus more on the patient experience, because “Satisfaction is the result of a single interaction that can evaporate, while experience is the full narrative arc that leaves a lasting impact”.

More personally, my recent experiences with ePatients has convinced me they are the ideal agents for change. I first met Deb Maskens when she kicked my [behind] in a debate at a conference for Kidney Cancer Canada (KCC), of which Deb is a co-founder. At the conference I learned how an ePatient-founded organization is able to bring together clinicians, researchers, and patients from all over Canada in order to disseminate best practices and help guide the future direction of research for kidney cancer. Deb and the KCC have also started the CanCertainty campaign that is tackling one of the great injustices in healthcare in Ontario and the Maritimes: the lack of universal coverage for oral cancer treatments. With public pressure mounting as a direct result of this campaign, there is hope for substantive change to the grossly unfair lack of public funding for oral chemotherapies.

Katherine O’Brien is an ePatient with metastatic breast cancer who runs a blog titled “I hate breast cancer” and is dedicated to increasing the awareness and visibility of women living with metastatic breast cancer.

Charlotte Schwartz is a friend whose son was born with Galactosemia. Her personal fundraising efforts raised over $15,000 and allowed the Hospital for Sick Children in Toronto to establish the first ever Galactosemia Research Fund.

These are but three examples of ePatients making a significant difference within healthcare. Physicians need to learn about ePatients and advocacy groups that exist within their medical specialty. We then need to identify people (patients and/or their families) and get them connected to any existing infrastructure, and we need to encourage them to get involved in advocating for their peers. Doctors need to recruit ePatients and then give them a seat at the table when determining how healthcare needs to adapt to provide optimal care.

 

Blogging by docs 101: What not to do, Part I

I am a big fan of Dr. Kevin Pho and his blog at KevinMD; I have read hundreds of posts on his site written by hundreds of authors, and while I may not have agreed with everything written, I never took issue with any single article…until yesterday.

Dr. Ashley Sumrall wrote an article titled “Does Brittany Maynard’s decision affect the future of oncology?“. My critique of what Dr. Sumrall wrote has nothing to do with the morality or politics behind medically assisted dying; it is about the ethics behind publicly questioning any person’s medical decisions. Let’s get to the article (excerpts from the article in italics, my responses in bold).

I recently read that Brittany Maynard took her own life. Plagued by glioblastoma, she chose to reject chemotherapy, radiation, and hospice. Tomorrow, I have a schedule packed with glioblastoma patients who personify courage, determination, and faith.

Implicit here is that Brittany lacked courage, determination and faith. This is what first got me thinking that if Brittany’s friends and family were to read this, they might rightfully be furious. I am furious on behalf of Brittany and her family.

As I have followed her story, I have so many questions. I wonder what she was told by her doctors. She states that she visited with “many experts.”

I love the quotation marks around ‘many experts’. Does Dr. Sumrall know which doctors Brittany visited? Or how many? Are those doctors not “expert” enough since they didn’t coerce Brittany into pursuing radiation and chemotherapy?

Also, as physicians, we are often wrong when asked the dreaded “how long do I have to live” question. If you corner an oncologist, the most honest one will tell you they don’t know. Many will quote “six months or less” for most stage IV or grade IV cancers. Often, this answer is based less on evidence and more on the need to end a difficult conversation.

I sincerely hope Dr. Sumrall, or any other oncologist, doesn’t answer any question simply to “end a difficult conversation”. Almost every interaction oncologists have with their patients are difficult. We are trained to act compassionately for patients facing a potentially terminal illness. How else are we supposed to answer mortality questions? We use reported evidence on median survival, and try to adjust based on patient factors for the person sitting in front of us.

And, more importantly, how much time did her doctors spend with her? In an era where physician visits grow shorter and shorter, were they watching the clock or the patient? Was she being squeezed in for a consultation? Did they know the impact of their words would be so large? Did Brittany know the truth about chemotherapy and radiation for this disease, as the side effects are vastly different than those from the omnipresent breast cancer?

Now that’s called “throwing your colleagues under the bus”. Again, simply because Brittany did not pursue every treatment possible does not mean negligence on the part of her treatment team. In fact, consults are usually much quicker for patients who agree to treatment; when patients are unsure or wish to forego treatment, the conversation is normally much more in depth to explore the patient’s reasons and ensure they are making the best choice for themselves.

Was she cognitively impaired by her illness, and did she fully understand? Was she worried about disappointing those who viewed her as a role model for assisted suicide?

It is completely unethical to question a patient’s competence and motives; even though confidentiality is not broken since the author never knew the patient, it is still inappropriate and hurtful to speculate based on pure conjecture.

I know nothing of her case, but I know this: I have seen people live for years with treatment.

The first half of this sentence should have been the first and only sentence of the entire post.

And the end is hard, but not usually painful. Suffering can always be diminished with properly trained physicians and nurses.

Pain is not the only cause of suffering. Intractable nausea, shortness of breath, inability to eat, knowing your family will watch you wither away and die, existential and spiritual distress – these are all causes of suffering that even the best medical care CANNOT always manage.

Brain tumor patients require and deserve every resource available. The families that I have cared for have been remarkably grateful for the extra time I have spent with them, discussing death, palliation, and faith.

Again, implicit here is the completely unfounded supposition that Brittany did not get time to discuss death and palliation with her physicians.

I fear that more cancer patients will seek out assisted suicide as an option due to fear of the unknown. Many will have a myopic view of their cancer or therapy options due to misinformation from their care teams or the Internet.

Why in the world would care teams provide “misinformation” to their patients? Is the entire oncology community outside of the author incompetent?

Their decisions may be colored by the fear of death and dying that pervades our society. Is this where oncology is headed? I pray not.

Is this where physician blogging is headed? I pray not.

 

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.”