Sunday, March 7, 2010

The Irony of Patient Autonomy

One of the cornerstones of medical ethics is the concept of patient autonomy. provides a succinct definition: “The right of patients to make decisions about their medical care without their health care provider trying to influence the decision. Patient autonomy does allow for health care providers to educate the patient but does not allow the health care provider to make the decision for the patient.”

At lunch the other day, I was talking about a particularly challenging case when this concept came up. After thinking for a few minutes, I was struck by a sense of irony that I wanted to share in case others have thoughts about this.

The patient is a teenager with leukemia. When she was diagnosed with leukemia, we didn’t really give her parents any choices about treatment. We told them their daughter has leukemia, she needs chemotherapy, and we think she should get this particular regimen. Sure we received informed consent to treat the patient (whether this is truly informed consent is a topic for a future post), but it’s not like we gave the parents a choice of regimens or the option to forego chemotherapy. And because leukemia in children is curable, even if the parents had refused chemotherapy, we would have gone to court to force her to be treated.

Did we respect the patient’s autonomy here? Based on the definition above, I would say we did not. We certainly influenced the decision – by not giving the parents any choices.

Fast forward to last week, when a bone marrow examination revealed residual leukemia. The next course of action at this point is not clear: should she go straight to a bone marrow transplant? If so, should it be a standard transplant, or a more experimental approach? How about more chemotherapy? Is so, which regimen? The right choice is not clear. My “lunch date” is not a physician. So he asked me, “How will the family decide?” Full of respect for the patient’s autonomy, I answered, “Well, I will lay out the options, list some pros and cons, and the family will make a decision.”

This is when Marco asked the question that sparked this posting: “How will they make that decision? They don’t have the expertise to make that call, do they? Isn’t that what you are trained for?”

And that’s when it struck me. This family has had two key decision points: the day the girl was diagnosed, and the day her marrow showed persistent leukemia. At the first point, my expertise was unimportant… any oncologist would have said the same thing (that she needed chemotherapy), and the patient’s autonomy was only a secondary consideration. At the second point, when the optimal choice is NOT clear, when the decision should be MOST informed by someone experienced, that’s when I was explicit about my desire to lay out choices and let the family decide.

I still don’t think I should tell the family what decision to make… I just think it’s ironic that when the decisions are more complex, and my expertise matters more, the patient’s autonomy is even more important.

Maybe that’s how it should be. What do you think?


creative gal said...

Thanks for sharing. . .This really has me thinking- how do I influence those decisions made by the patients I see? I will come back and post more later. . .

empy said...

We actually talk about this irony a lot in support groups! When the patient is most scared and most confused is the very time when the doctor suddenly starts giving them control. Often they don't want it or don't know what to do with it. Some people realize this is a time when a second opinion might offer helpful information, and they start to do some research to make a decision they feel best about. Others get angry or scared and keep throwing the control back to the doctor. Of course, when dealing with sarcoma, this is a good time for people in support groups to encourage the patient to get to a sarcoma center if possible. Sometimes they get more options, better options, and much clearer guidance at a high-volume center. It is hard to get someone who is confused and frightened to see how important that can be! This vulnerable time is when they just want someone to fix it fast.

It is really hard for a patient to wrap their head around there being "no clear direction" at the first recurrence. Most people expect for there to be a set plan for that scenario. At diagnosis, having a clear plan becomes something that we all rely on, and sticking to the plan is the definition of hope for many. "No plan" is very unnerving and feels like uncharted waters!

Rosie said...

As a mother of a child who has been treated for leukaemia I felt bound to take the advice of the expert even though I kept myself as informed as possible. When it came to the decisions about joining a trial, once we had the reassurance of the doctor that our childs best interest was his priority rather than the outcome of the trial, we followed his advice. When we were weighing up the odds of being on or off trial, my huband asked the oncologist "what would you do if it was your daughter ?". He answered honestly so we went with that plan. You have the expertise, we do not. What you would recommend for your own child or family member is the best you can do to guiding a family. We all know that things do not always go the right way but I do think that a doctor will have a view of a treatment plan and it should be offered. After that its up to the patients to take that advice or not.

I enjoy your blog, thankyou.

Elaine Schattner, M.D. said...

Thanks for such a thoughtful post.

I think autonomy is an ideal, something that is essentially unachievable in most complex medical circumstances such as refractory leukemia. The reality, most often, is that a patient's (or parents') autonomy is manifest by their choice of physician.

Doctor David said...

Thank you all for your thoughtful feedback. I agree with Dr. Schattner, autonomy is an ideal, not easily (if ever) attainable. Your way of viewing this, that the autonomy lies in part in the choice of physician, is a way I never look at this before. Thanks!

The Kid said...

Very interesting topic. Here is my opinion.

I believe both doctors and patients need to be more emotionally intelligent.

For the patient
1. They have to understand that a serious condition could make them take a decision in panic.
2. Trust the doctor for his experience
3. Triple check before over ruling the doctor's suggestion

For the doctor
1. Doctors need to get the trust of the patients with their expertise. I have seen some young doctors blatantly taking wrong decisions, and forcing it down the patient's throat even when the patient knew better. It only shows doctor's insecurity.

2. Don't try to twist the patient's arm when treating them.

Elizabeth Munroz said...

As a support group moderator, I encourage patients,to learn as much legitimate information as possible. Though the diagnosis is scary, it's a lot more scary to go into it blind. A knowledgeable patient can have more confidence in him or herself, can gain a better partnership with the doctor, and feel empowered in making those difficult decisions. Being well educated helps them to ask the right questions, and bring up points the doctor needs to know to help broaden his perspective on the patient's condition.

Knowledge is power.

Kimberley said...

As an onc mom, I love that you actually talked about this. When my son was first diagnosed they were rushing him to surgery and the attending was pushing stacks of paper at me to sign, telling me time was of the essence. I started signing and initialing like crazy, but he insisted on explaining every detail. After someone tells you your child will die without immediate treatment, informed consent seems irrelevant. Not to mention that the entire concept of "informed" is relative. Yes, as a parent I understand my role in the decision process. The problem is the diagnosis is breaking my heart and the responsibility is breaking my back...

Wendy S. Harpham, MD said...

As a primary care physician (internal medicine) and long-term survivor of chronic lymphoma, I've experienced this issue from both sides of the stethoscope.

I believe my patients came to me not only for information about their condition and treatment options, but also for my expert opinion. I always made it clear the final decision was up to them, and that I saw my job as helping them make the best decision for them, even if that decision differed from my recommendation.

As a patient, I have understood in a whole new way how much patients depend on the advice of their physicians. Whenever the evaluation or course of treatment for my current problem was not clear cut, I often pursued second or third opinions with my primary physicians' blessings.

This short article in Oncology Times highlights some of the complexity of helping patients exercise autonomy:

I've also been treated in three clinical trials (again, with the full support of my primary care physicians). This article talks about the difficulty of obtaining truly informed consent:

With hope, Wendy

jaime said...

I agree with many things people have said here - some patients want the doctor to make all the decisions, some do better when they have more's touchy, and I think there are many shades of grey, depending on the patient/their family, and the physician. I like what "the kid" brought up, about getting different opinions before overruling the dr, and really, making any decision in general (IMO). DIfferent opinions from informed professionals (all kinds) can be a huge help. That all being said, I do think there's something to be said about pure patient autonomy....including the decision, if and when, to stop treatment, which is never an easy decision to make - or watch.

Doctor David said...

What great discussion! Thank you all for the thoughtful comments and feedback.

I completely agree with Elizabeth that knowledge is power, and key to any sense of autonomy is having that power to participate in the decision making process. I guess that's probably where the right balance lies... not in handing over the decision to the patient, but in engaging the patient in the decision making process. And that is how I usually phrase things. I say, "We are going to make this decision together... as a team." Because I really think that is what is best... not for me to tell a patient what to do, and not for me to insist that they patient make the decision, but rather that we decide together on a course of action. Kimberley is right.... it's backbreaking to ask a parent to take full resposibility for these decisions. This is a burden that can be shared.

Wendy, Jaime, and The Kid all brought up the issue of second (or third) opinions. I am a strong advocate of offering other opinions. Just today, I offered one of my patients the phone number for a national expert in his diagnosis who works at NIH in case he wanted to talk to someone else. I think second opinions are important for so many reasons, but the most important reason is that they allow a patient or family to truly feel that they are making the most informed decision they can.

Informed.... soon I'll write about informed consent. I'll bet Rosie and Kimberley will have something to say about that!

Mom on Health Patrol said...

I have asked my child's doctors, "If she were your child, what would *you* do?" I trust them enough to respect their advice, while doing my best to learn and understand the options.

anavar said...

To trust your doctor - depends on your doctors behavior and his responses to your questions. You should learn as much as possible and doctor should include you, your questions, suggestions and doubts in treatment.

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Epicurus said...

Her survival is the only thing that matters. Nothing else. Not patient autonomy, not anything else. The decision on their part was that they wanted her to live. It is up to you, a highly trained and educated physician, to make the calls. Not them. Period. You can either ask them to agree, or disagree as to whether they want her to live or not.

Alison said...

Her survival is the only thing that matters? As the mother of a boy who lost his battle to complications of Ph+ ALL three years ago, this statement is incredibly blunt and misguided. Did you see the picture that accompanied the post? What is your definition of survival? My definition involves more than respirations and a pulse. I agree that they need to have all the cards on the table, but the doctor is not the card dealer. The doctor needs to inform the family which cards they should play. Our son's doctor's kept talking about what future treatments he would have. Our son was diagnosed with Ph+ ALL at age five. He had pre-existing medical conditions that compromised his chemo, making it less effective. We knew we couldn't subject his body, his spirit, to more. The best decision we made as a family was to stop. He left this earth sadly and beautifully at home. Not desperately and emergently.

cancerstinks said...

After becoming a "MOMCOLOGIST" in 2008 when my daughter was diagnosed with leukemia, I quickly learned that I am her advocate. I am the one that takes full responsibility for the treatment I selected for her. But I can only lay my head down peacefully at night, knowing she is on the best protocol because of the information & comfort her oncologist gave me. Thank you so much for your blog, I am fascinated to hear your thoughts, frustrations & joys.

Will's Dad said...

It is an incredibly difficult burden to put on these families. Your son has failed therapy and we are out of know curative options. Here are some things you can do.
1. Hospice care
2. Phase I or Phase II studies

If you would like to stop therapy then we'll support you. If you'd like to try and 'keep him comfortable' with a decent quality of life then we'll support you.

As you know each family is different and some people may be relieved by this. Others may feel backed into a corner and feel as if their child's life has been put in their hands and if they die the guilt with this is enormous. Some people can have their entire life consumed by this because they have been put in a position where they read the scenario as:

It is up to you to decide if you child lives or are some poorly designed Phase I single agent dose escalation studies to choose from....Good Luck!

When that is not an acceptable option what then? What support can be offered for these patients? What can these families do?

It is a difficult scenario all around but one place to start is a more clear delineation of what your role is. The families see you as the decision makers, the expert, the problem solver.

My son just turned two and his refractory neuroblastoma did not respond to high dose chemo. We were given the 'your child will die' speech. What were never told after this point was how the doctors role had changed.

At this point I think it would be helpful to share this with the family. You are now no longer a mechanic who can fix their care. You are now AAA and you can recommend garages around the country who may be willing to service this vehicle even though your garage feels it is beyond repair.

We learned this through our experience but things would have been much easier to navigate if this was part of the program. It was as if a checklist was being done:
1. Be brutally honest about odd?
2. List 'do nothing/hospice' as an otpion?
3. Mention other trials with quality of life as goal?

If you select item three then the obsession with clearly outlining the goals and informed consent takes over your life. However, item 4 on that list of highlighting how your role has changed should be added and it should be the most important thing stressed to these families.

Maybe it is elsewhere but in 5+ years of therapy at 6 different pediatric hospitals this seems a very important missing piece. We have been lucky enought to keep our son alive and we figured this out on our own. However, it took a while and when you figure this out it is very liberating. These families have almost too much trust in their caregivers and are afraid at times to seek out other options. I think some people may take advantage if they knew of this change in dynamic. You guys know this takes place after the 'incurable' speech...however, it is not clear on our side of the table.
Just found this blog...I'm looking forward to reading more. Thanks

Cally Miller said...

I must say, i'm curious. I have many questions. I want to be a pediatric oncologist. Is there any down time? Is it hard to juggle this and still have time for a family? how long did it take you? was it worth it? do you enjoy it? what does a daily day consist of? I'm sure death is a emotion that is always there, is it hard to handle? i have many more but i'll just leave it at that for now!

Chantal said...

You done surgery on my son Karson back in 2010. He is so healthy today and growing more then ever! Im so thankful for you and everyone at that amazing hospital if he wasnt you guys he would not be here today!
Thanks Chantal

Javed Sunesra said...

Your concepts were simple to understand that I wondered why I in no way looked at it prior to. Glad to know that there's a blogger out there that certainly understands what he's discussing. Great job!!!

viagra online said...

The Irony of Patient Autonomy... what an incredible title, actually patients haves no idea about what they want!

Second opinion services said...

Your ideas were simple to know that I considered why I in no way considered it before. Grateful to know that there's a blog writer out there that certainly is aware of what he's talking about.

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Vitalita said...

there are situations when patients need autonomy to decide for themselves, no matter how funded the physician's recommendation is (particularly when it concerns chemotherapy) but most of the time they should listen to their doctor

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