Autonomy

During Multidisciplinary Gynecologic Oncology Tumor Board at Massachusetts General Hospital, a case was presented of an older woman with stage IV ovarian cancer who was deemed inoperable. Following review, we recommended a course of chemotherapy.

I asked our fellow what treatment she would administer, and this sparked a discussion on how patients and providers create a treatment plan. We discussed options, evidence, and about how best to maximize her quality of life while treating her cancer. We also spent some time discussing what constituted “acceptable” treatment-related toxicity. I was struck by that notion of “acceptable toxicity” and it made me wonder about who decides that—who determines what is acceptable?

I recall taking care of a patient in her 50s with recurrent ovarian cancer. She was relatively asymptomatic despite omental carcinomatosis, which had gotten worse following three prior lines of chemotherapy. On review of her treatment history, it turned out she had never received pegylated liposomal doxorubicin (PLD), which is among the most active agents in recurrent ovarian cancer. I recommended we proceed with PLD and reviewed how it would be administered. Before I could go much further, she stopped me.

“I don’t want it,” she declared.

“What?” I asked, slightly puzzled.

“You heard me—I don’t want PLD.”

I was incredulous—how could she refuse the drug that is most likely to work against her cancer? “If I may, can I ask why?”

“It’s because of the skin toxicity. I know about PLD. I’d have to avoid tight clothes, wear sensible shoes, like clogs and Birkenstocks. Frankly, I hate clogs, and I’ll be damned if this cancer forces me to wear them.”

I stared at her even more perplexed. “I am not sure I follow..”

“Dr. Dizon, I have few passions left that cancer has not taken from me—and one of them is my love of shoes—I love my high heels. No, let me rephrase. My life will not be worth living to me if I cannot wear them. No drug is worth giving them up.”

“So, what you’re saying is,” I stated, “you’re going to refuse the drug that could help the most because you refuse to give up your stilettos.”

Looking me straight in the eyes, she said, “That’s right.”

I recall immediately being taken aback, thinking how foolish she was. After all, I was offering a drug that could help stop the cancer in its tracks; it could prolong her life. And yet, instead of taking my advice, she had rejected it; wouldn’t even consider it. “Shoes before cancer” seemed to be her motto.

Allowing myself time to step back, however, made me realize it was not me who was in a position to determine what toxicity is “acceptable.” I am not the one who must live with treatment and its impact on daily life. Indeed, only one person has to look at herself every day, fight cancer, and fight to remain true to who she is despite it. It was my patient in front of me, and she did not want PLD. In essence, she did not want to take the risk that her cancer would mean giving up yet one more passion.

“Okay,” I said. “There are still options. Let’s go through them.” After further discussion, we agreed on the best way to go forward.

Perhaps one of the hardest lessons for an oncologist is to acknowledge that despite the best evidence, we cannot dictate treatments. What we can do is provide information, give advice, guide the formation of a treatment plan, and then monitor and care for those we are aiming to help.

Cancer takes away much from the person living with it. It forces our patients to change, to accommodate it and its therapies. Because of this, I have a deep respect for maintaining the ability of our patients to choose. In our mission to provide comfort and hope, we must accept the autonomy of patients and the informed choices our patients make, without judgment.

After all, “you never truly know someone, until you’ve walked a mile in her shoes.”

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Comments

Michael Jordan Fisch, MD, MPH, FASCO

Aug, 23 2012 10:32 AM

Don, your blog highlights not only the importance of autonomy, but also how well an open-minded, curious stance by the oncologist can work.  You listened, you reflected back the patients's position and took pause to understand it better.  You thought deeply about the situation and what "acceptable toxicity" might really mean to this person.  It brought to mind the ASCO Annual Meeting session this year, chaired by Teresa Gilewski with Peter Bach, Marty Raber, and George Sledge.  The session was about the oncologist as patient or family caregiver.  In a wonderful, reflective talk about his father's experience with prostate cancer, Dr. Sledge said, quite vividly, "acceptable toxicity isn't."  He recalled his father's fatigue and also the bothersome, drenching hot flashes that were far more profound to him than his oncologists were able to fully appreciate.  Trying to understand (or at least imagine) the patient's experience is humbling, like so much of medicine, but essential and tremendously gratifying. 

Francisco Pimentel Cavalcante, MD

Aug, 23 2012 2:29 PM

Great Blog about “acceptable toxicity”.

Don S. Dizon, MD, FACP

Aug, 23 2012 2:57 PM

Dear Mike: Thank you for that feedback. It is an important lesson that we all learn with experience, and I think the mantra for us all as we move forward in personalizing medicine is said best by Dr. Sledge: Acceptable Toxicity Isn't. As the presentations at the Annual meeting are available as webcasts, let's encourage everyone to visit the Virtual Meeting and view the session you mention chaired by Drs Gilewski and Bach. DSD
 
Dear Francisco: Thanks for the comment. Highly gratifying to hear from my colleagues! DSD 

Matthew S. Katz, MD

Aug, 25 2012 1:16 PM

Nice post, Don.  The 'standard of care' only works for each person when we account for that person's needs and priorities, both for curative and palliative care.  That means as caregivers we have to listen, which clearly you do.  

I would offer a slight variant on Dr. Sledge's comments on toxicity.  All of us differ in our risk-taking and priorities, both in life and with medical treatment.  The key is informed decision-making.  Ultimately it's good communication between doctors and patients that helps ensure any intervention we offer is acceptable.

Don S. Dizon, MD, FACP

Aug, 26 2012 7:50 AM

Dear Matt, thank you for your comments (and the follow on Twitter!). It's an interesting concept isnt it- standard of care. Almost an antithesis of personalized medicine. Perhaps medical professionals should rethink the concept of standard of care entirely taking into account what is discussed in this blog post and brought in by you, Michael Fisch, and others who have reached out to me on twitter. Ultimately, it is all about listening to patients... and hearing what they say. I like to believe we do both, but even I have been guilty of doing one, but not the other. Life's lessons- and learning everyday. DSD

Anees B. Chagpar, MD, MPH

Sep, 09 2012 8:16 PM

Don, A wonderful blog, as always.... clearly individual patients will decide what they consider “acceptable” in terms of toxicity, and will make decisions appropriate to themselves as part of an informed decision-making process with their physician (a cornerstone of patient-centered care).  Your blog, however, brings to mind perhaps a larger issue… that being the constant push-pull we have with autonomy, and the balance of other ethical principles.

For example, at a recent journal club, we were discussing the trends in surgical management of breast cancer -- noting a rise in mastectomy rates. Some have argued that breast conservation should be a quality metric, as survival is equivalent to mastectomy.  I ponder this concept not infrequently…. our job to educate and inform, but ultimately, isn’t it our duty to respect patients’ autonomy?  If a well-informed patient, presented with all the options and the risks and benefits of each, chooses mastectomy, how then could that be a mark of poor quality?  Who am I to tell a patient that she should choose one option over the other, if the evidence for survival is the same?

On the other hand, what about patients who insist on an MRI when we know one isn't needed? Do we oblige on the ethical principle of autonomy? Or refuse on the basis that unnecessary tests may in fact lead to harm which would violate the principle of non-maleficence, not to mention the fact that society suffers when healthcare costs rise due to tests done without rationale (a violation of the principle of justice)? What about when patients with clearly end-stage malignancies "want everything done", even when one knows the efficacy of any treatment would only add cost and toxicity without meaningful improvements in either quality or quantity of life?  Is our primary duty to oblige the patient’s wishes, or do we have a duty to society as well?  It is far easier and more comfortable to simply go along with our patients’ wishes, but is this always the right thing to do?  There is absolutely no doubt that communication is key....

In the case of your patient whose desire for stilettos trumped her desire for treatment, it is hard to argue with her passion for the perfect pump… she harms no one in this decision which maximizes her personal utility without compromising that of society.  But I wonder if autonomy in all cases reigns omnipotent....

Don S. Dizon, MD, FACP

Sep, 11 2012 6:02 AM

Dear Anees:

Thanks for your highly insightful comments! I agree that physicians must respect the balance between autonomy and other ethical principles (non-maleficence and justice, for example, as you point out). In order to do this, I think physicians must engage patients in a balanced discussion of risks and benefits of any therapeutic maneuver to ensure any and all decisions are informed. I believe most of us in clinical medicine do this as a matter of routine practice, thought constraints on our clinical time are probably the biggest threat to optimizing communication.  I too have been thinking about the larger question of how autonomy is factored in to quality metrics. How do we craft measures that are useful to institutions and oncologists? If we are too broad ("___% of patients are offered endocrine therapy for hormone positive breast cancer) then they are not only difficult to measure accurately (how does one measure "offered") but perhaps are not entirely useful. However, if they are specific (___% are given a prescription for endocrine therapy...) then how does one factor in a proportion of patients who do not wish to take endocrine therapy, let alone compliance.  In the end, I guess I believe autonomy must be respected above all else (and if at all possible, considered in the description of quality). As oncology professionals, we must engage our patients to ensure that informed decisions are reached only after an open and transparent discussion. 

DSD


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