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?

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.

Diagnostic delays in cancer

My second post ever on this site was titled “Diagnosing cancer is hard”, where I argued that making a diagnosis of cancer (or making an appropriate referral) is difficult for primary care physicians in the setting of non-specific complaints that are normally *not* due to cancer. This week an excellent article on the subject was published at The BMJ called “Rethinking diagnostic delays in cancer: how difficult is the diagnosis?”, and I urge everyone to read the article.

Dr. Lyratzopoulos and colleagues do an excellent job describing which cancers are easier, intermediate, and harder to suspect and diagnose. They also discuss potential reasons why “multiple consultations” (three or more visits to a primary care physician before referral to a specialist is made) occur and how that leads to a delay in diagnosis and erodes the trust of patients in the healthcare system. I was quite honestly shocked that 80% of patients eventually diagnosed with cancer had only one or two consultations with a primary care doctor before the appropriate referral was made (presumably one to hear the complaint, and a second visit to go over test results stemming from the initial complaint). I was also surprised that the traditional ominous “red flags” have only a 5% (in women) or 10% (in men) positive predictive value for cancer.

What I feel is missing from the analysis in this BMJ article is the type of situation I recently encountered. A middle-aged man saw his family doctor for a complaint of back pain, and was reassured it was mechanical (using the evidence of a normal chest x-ray and spine x-ray). Three months later he developed acute onset bilateral leg paralysis from multiple-level spinal cord compression from an undiagnosed lung cancer. I would argue that this situation, a single visit with reassurance and eventually a catastrophic diagnosis, is more upsetting for patients than multiple follow up visits (usually with additional tests in between) leading to a moderate delay in referral to an oncologist. Situations like this are not adequately captured in the BMJ article since technically the number of visits is two (the trip to the GP and the emergency room visit post-paralysis).

My takeaway points from this discussion are that:
1) Multiple visits to primary care doctors are not necessarily a bad thing since persistence or progression of symptoms along with close follow up may reduce delays in a cancer diagnosis
2) We need a way to also capture delays in diagnosis in days/weeks/months rather than simply number of primary care appointments
3) Primary care physicians have an incredibly hard job balancing judicious use of resources and the appropriate level of testing indicated for vague or non-specific complaints related to an undiagnosed cancer

Overall I am quite happy to see this situation being studied and published, and I think all primary care doctors should keep the list of easier, intermediate, and harder cancers to suspect and diagnose in the back of their minds.

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.

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.