One of the cornerstones of medical ethics is the concept of patient autonomy. MedicineNet.com 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?
48 comments:
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. . .
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!
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.
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.
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!
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.
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.
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...
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:
http://tinyurl.com/OT-041007
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: http://tinyurl.com/OT-091008
With hope, Wendy
www.wendyharpham.com
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 autonomy...it'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.
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!
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.
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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Great post!
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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.
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.
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.
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 dies...here 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?
Check.
2. List 'do nothing/hospice' as an otpion?
Check
3. Mention other trials with quality of life as goal?
Check
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
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!
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
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!!!
The Irony of Patient Autonomy... what an incredible title, actually patients haves no idea about what they want!
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.
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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(11)COLD SORE
and mare that are not mentioned here He also cured my friend from cervical cancer. so contact him through his Email address : dranuge@gmail.com or whatsapp him on +234816466838
I am here to give my testimony about Dr Anuge who helped me.. i want to inform the public how i was cured from (HERPES SIMPLEX VIRUS) by Dr Anuge, i visited different hospital but they gave me list of drugs like Famvir, Zovirax, and Valtrex which is very expensive to treat the symptoms and never cured me. I was browsing through the Internet searching for remedies on HERPES and I saw comments of people talking about how Dr anuge cured them. When I contacted him he gave me hope and sent Herbal medicine to me that I took for just 2 weeks and it seriously worked for me, my HERPES result came out negative. I am so happy as I am sharing this testimony. My advice to you all who thinks that there is no cure for herpes that is Not true just contact him and get cure from Dr Anuge healing herbal cure of all kinds of sickness you may have like
(1) CANCER,
(2) DIABETES,
(3) HIV AIDS,
(4) URINARY TRACT INFECTION,
(5) CANCER,
(6) IMPOTENCE,
(7) BARENESS/INFERTILITY
(8) DIARRHEA
(9) ASTHMA
(10)SIMPLEX HERPES AND GENITAL
(11)COLD SORE
and mare that are not mentioned here He also cured my friend from cervical cancer. so contact him through his Email address : dranuge@gmail.com or whatsapp him on +234816466838
Good news this is to everyone out there with different health challenges, as I know there are still a lot of people suffering from different health issues and are therefore looking for solutions. I bring you Good news. There is a man called Dr odion a herbal practitioner who helped cure me from HSV (2), i had suffered from this diseases for the past 5 years and i have spent so much money trying to survive from it. I got my healing by taking the herbal medicine Dr odion sent to me to drink for about 14 days . 3 days after completion of the dosage, I went for a medical checkup and I was tested free from HSV. all thanks to God for leading me to Dr odion who was able to cure me completely from this deadly diseases, I’m sharing this so that other people can know of this great healer called Dr odion because I got to know him through elizabeth who he cured from HIV. I was made to understand that he can cure several other deadly diseases and infections. Don’t die in ignorance or silent and don’t let that illness take your life. Contact Dr odion through his email drodionherbalhome12@gmial.com You can also whatsapp/call him on:+2349019421176 . He cure all forms of disease {1}HIV/AIDS {2}DIABETES {3}EPILEPSY {4} BLOOD CANCER {5} HPV {6} BRAIN TUMOR {7} HEPATITIS {8}COPD{9} SICKLE AND ANAEMIA.etc Be kind enough to share as you received
I am so Happy to be writing this article in here, i am here to explore blogs forum about the wonderful and most safe cure for HERPES SIMPLEX VIRUS.I was positive to the Virus called HERPES and i lost hope completely because i was rejected even by my closet friends. i searched online to know and inquire about cure for HERPES and i saw testimony about DR Ebhota online on how he cured so many persons from Herpes Disease so i decided to contact the great herbalist because i know that nature has the power to heal everything. i contacted him to know how he can help me and he told me never to worry that he will help me with the natural herbs from God! after 2 days of contacting him, he told me that the cure has been ready and he sent it to me via FEDEX or DHL and it got to me after 4 days! i used the medicine as he instructed me (MORNING and EVENING) and i was cured! its really like a dream but i'm so happy! that's the reason i decided to also add more comment of Him so that more people can be saved just like me! and if you need his help,contact his Email: (drebhotasoltion@gmail.com) You can contact him on WhatsApp +2348089535482 He also have the herb to cure difference cure for any sickness (1) HERPES,
(2) DIABETES,
(3) HIV&AIDS,
(4) URINARY TRACT INFECTION,
(5) HEPATITIS B,
(6) IMPOTENCE,
(7) BARENESS/INFERTILITY
(8) DIARRHEA
(9) ASTHMA..
I am so Happy to be writing this article in here, i am here to explore blogs forum about the wonderful and most safe cure for HERPES SIMPLEX VIRUS.I was positive to the Virus called HERPES and i lost hope completely because i was rejected even by my closet friends. i searched online to know and inquire about cure for HERPES and i saw testimony about DR Ebhota online on how he cured so many persons from Herpes Disease so i decided to contact the great herbalist because i know that nature has the power to heal everything. i contacted him to know how he can help me and he told me never to worry that he will help me with the natural herbs from God! after 2 days of contacting him, he told me that the cure has been ready and he sent it to me via FEDEX or DHL and it got to me after 4 days! i used the medicine as he instructed me (MORNING and EVENING) and i was cured! its really like a dream but i'm so happy! that's the reason i decided to also add more comment of Him so that more people can be saved just like me! and if you need his help,contact his Email: (drebhotasoltion@gmail.com) You can contact him on WhatsApp +2348089535482 He also have the herb to cure difference cure for any sickness (1) HERPES,
(2) DIABETES,
(3) HIV&AIDS,
(4) URINARY TRACT INFECTION,
(5) HEPATITIS B,
(6) IMPOTENCE,
(7) BARENESS/INFERTILITY
(8) DIARRHEA
(9) ASTHMA..
I experienced dark urine and ribs pain, so I went to the hospital for treatment and I was diagnosed for chronic HEP B. The doctor gave me drugs to slowdown the viral load which later worsens the ailment because the drugs weren’t effective anymore. And I was so scared because they say it has no cure, I told a friend about it and luckily he told me he ones battled same problem in the past but he was saved by Dr. Iyabiye. He gave me his contact and I reached him and I became well and tested negative after the treatment. Here is his contact if you have such case. Contact: +234-815-857-7300, (iyabiyehealinghome@gmail.com)
good day everyone. I am Sarah Wilson from France, i have been totally cured from a deadly disease called Fibrodysplasia Ossificans Progressiva {FOP} from a great herbalist, Sakura, he has brought happiness to my life.
i came to know about him on internet when taking a research on {FOP} cure,i found a post of David Clara testifying about the great work of this herbalist Doctor, that was when i got to know about the Herbalist Doctor ,i make contact with him and i told him my problem, we made a little conversation and send me his herbal medicine through {EMS DELIVERY SERVICE} few weeks i receive the medicine from the (EMS) at my doorstep.
I used the herbs as the herbalist Doctor instructed me to, after some days of taking the herbal treatment all the pain was gone and my back bone became normal.
herbalist sakura has restored my life .
if any of you out there leaving with (FOP) please contact herbalist via mail drsakuraspellalter@gmail.com or Whats-app +2348110114739
You can also mail me for more information good day everyone. I am Sarah Wilson from France, i have been totally cured from a deadly disease called Fibrodysplasia Ossificans Progressiva {FOP} from a great herbalist, Sakura, he has brought happiness to my life.
i came to know about him on internet when taking a research on {FOP} cure,i found a post of David Clara testifying about the great work of this herbalist Doctor, that was when i got to know about the Herbalist Doctor ,i make contact with him and i told him my problem, we made a little conversation and send me his herbal medicine through {EMS DELIVERY SERVICE} few weeks i receive the medicine from the (EMS) at my doorstep.
I used the herbs as the herbalist Doctor instructed me to, after some days of taking the herbal treatment all the pain was gone and my back bone became normal.
herbalist sakura has restored my life .
if any of you out there leaving with (FOP) please contact herbalist via mail drsakuraspellalter@gmail.com or Whats-app +2348110114739
You can also mail me for more information sarahwilson33312@gmail.com
I have been suffering from a deadly disease (Hsv) for the past 2 years now, I had spent a lot of money going from one places to another, from churches to churches, hospitals have been my home every day residence. Constant checks up have been my hobby not until this faithful day, I was searching through the internet, I saw a testimony on how Dr Ehimare helped someone in curing his (Hsv) herpes disease, quickly I copied his email which is drehimare3@gmail.com just to give him a test I spoke to him, he asked me to do some certain things which I did, he told me that he is going to provide the herbal cure to me, which he did, then he asked me to go for medical checkup after some days after using the herbal cure, behold I was free from the deadly disease, he only asked me to post the testimony through the whole world, faithfully am doing it now, please brothers and sisters, he is great, I owe him in return. if you are having a similar problem just email him on Drehimare3@gmail.com Or whatsapp him via +1 (267) 691-1087
Good day to you all from the United States,I have been suffering from (HERPES) disease for the last eight years and have had constant pain, especially in my private parts. During the first year,I had faith in God that i would be healed someday.This disease started circulate all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B diabetes) by this Man Dr Ehimare and she also gave the email address of this man and advise me to contact him for any sickness that he would be of help, so i wrote to Dr Ehimare telling him about my (HERPES Virus) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man, few weeks later i started experiencing changes all over me as Dr Ehimare assured me ,after some time i went to my doctor to confirmed if i have be finally healed, behold it was TRUE, email Dr Ehimare on : (drehimare3@gmail.com ) whatsapp him : +1 (267) 691-1087 And He also have herbs medicine to cured the following diseases; eczema,urethra wart,chronic problems.Herpes, Cancer, Als,Hepatitis, Diabetes, HPV,Infections,ulcer ETC
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