A day in the life: palliative radiation oncology

This is the first post in a running series where I describe a typical day in the life of a radiation oncology resident on a particular rotation, obviously from my own viewpoint. It seems to me that friends and family, as well as resident colleagues outside of oncology, don’t really know much about radiation oncology or what radiation oncologists do day to day and how we help patients. I’m hoping this series will shed some light on the specialty.

*Also please note that the patients described below are NOT actual patients but are fictional situations I routinely encounter.

I start my day around 8:30 am, when I finish preparing (I usually start the day or night before) for the patients I will be seeing that day by reading previous consult notes and reviewing their test results. In the morning there are typically 3-5 new referrals for palliative radiation and I typically see two or three of them. At 9 am I see a man in his seventies with a diagnosis of metastatic prostate cancer who was admitted to hospital overnight with back pain and leg weakness, and in whom an MRI of his spine showed spinal cord compression (tumor pressing on the nerves running up and down the spine). This is considered a radiation oncology emergency and after taking a full history and performing a physical exam, I will report to my staff and together we will carefully review all the imaging scans taken to date (which may include plain x-rays, bone scans, CT, PET or MRI scans). We will “consent” the patient, meaning explaining in detail why we are offering radiation to the spine (to help shrink the tumor to alleviate the compression on his spine), how it is given (one treatment per day for five days) and the side effects (pain getting worse the first day before it gets better, nausea). We then schedule his “planning” CT scan (so we can tell our radiation machines where to aim the radiation) for later that morning and his start of treatment (for an emergency such as this we start the same day, usually in the late afternoon). We also optimize his medications (giving a steroid, dexamethasone, to reduce the inflammation caused by the tumor in the spine, an anti-nausea medication, and sometimes altering their opioids for pain management).

By now it is 10:30 am and I go see my second patient of the day, a young woman in her fifties with metastatic breast cancer with progressively worsening pain in her right ribs and chest. After another history and physical exam, I review with my staff not only the CT scan and bone scan but the details of her previous radiation treatment to her right breast in comparison to where we propose to give radiation now to ensure there is no overlap (if there is overlap it may not be safe as re-irradiation can have toxic side effects). I organize a CT scan for noon but have to wait to schedule her radiation treatment until after I email her medical oncologist to discuss scheduling her radiation between cycles of chemotherapy in order to avoid increased side effects when chemo and radiation are given too close together. I may also put a wire on the patient’s skin in the area of pain to help me determine where to give radiation since rib metastases can sometimes be difficult to fully appreciate on planning CT scans.

The rest of the morning is spent scheduling and documenting these encounters on three different hospital computer systems and dictating notes on the phone. After lunch and/or educational rounds I go to the “planning” area to “contour”, which means outlining (by drawing with a mouse) the tumor seen on the CT scan (the one acquired that same day) that is causing the patient’s symptoms. After some other boring technical details regarding how to expand the contours to ensure the radiation has its intended effect, I sit down with the radiation therapist assigned to this case and describe the clinical situation and what I have contoured. The therapist (or “planner”) will then design a way for the radiation beams to be organized in order to physically provide radiation dose to the tumor that was contoured while minimizing radiation to the healthy surrounding tissue and organs. There is a time crunch for my patient with spinal cord compression since his radiation is starting in a few hours and the contours and final radiation plan has to be approved by the staff radiation oncologist (an MD) and reviewed and approved by a medical physicist (a PhD) before the plan is uploaded to the treatment machine. I do the same thing (but without the time crunch) for the patient with rib pain, but in her case we (the entire team involved) have to be extra careful to give radiation to the tumor in her ribs while avoiding overlap with her previous breast radiation, and minimizing dose to her right kidney (which is in the same vicinity) as kidneys are highly sensitive to radiation and we do not want to damage them and cause impaired renal function.

The rest of the late afternoon is spent doing miscellaneous activities. Most days I will take one or two calls from doctors at our affiliated hospitals (in internal medicine, urology, thoracic surgery, medical oncology, etc.) for patients they believe would benefit from palliative radiation. I triage the urgency and help organize who/when/how the patients will be seen. Once or twice a week I will walk to the hospital across the street or a few steps down the road to see an urgent consult and go through the same process (history, physical, organize CT scan and treatment, and contour). I also return calls from patients at home who recently completed radiation who have concerns or side effects of radiation, and review any test results (usually CT or MRI scans) I had ordered for patients I had seen previously.

By now if it’s not past 5:30 I will go pick up some or all of my children from school or daycare and head home, except for the once or twice a week I am on call in which case I will take over the responsibility for the inpatients admitted to radiation oncology (typically 15-20 patients) until 9 am the next day.

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.

 

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.