The Slippery Slope of Shared Decision-Making

[Hemodoc]

By Peter Laird, MD

The NY Times article titled When Ailments Pile Up, Asking Patients to Rethink Free Dialysis explores the ethical boundaries of shared decision-making, a new twist on the long held ethics of patient autonomy. During the entire course of my professional career in medicine, my underlying ethical framework was that of patient autonomy. My understanding of my role in difficult cases was that of an educator giving informed consent of all available treatment options.  Indeed, informed consent follows the accepted ethics of patient autonomy wherein patients make their own informed decisions, not the doctor.

In such, the medical community rejected the previous medical ethics known widely as paternalism where the doctor made decisions for the patient often without full consent or information. In my nearly 20 years of practice, I cannot recall at any time where the ethical platform of patient autonomy failed. Yes, there were difficult cases and at times continued support of a patient in dire straights with essentially no chance of recovery presented itself. Yet, in all that time, those that truly were beyond our help ended just that way, beyond our help no matter what the family desired. Nature took it's course.

There were other cases where the medical team was simply wrong in their assessment of the patient's prognosis. The most noted case that comes to memory is that of a teenage girl who became comatose for an undisclosed reason leaving her without oxygen for an undetermined amount of time. She had a suspected chemical abuse, but it was never documented or proved conclusively. As she lay motionless in the ICU day after day, the physician team approached her family several times with the bleakest of prognosis, yet the family remained faithful and never gave up. After about two weeks of the patient laying in a coma with no measurable responsiveness, her mother reported to us that she had moved her fingers. I didn't believe her.  The next day, the nurses began to tell us that she was moving her fingers and responding, yet on our examinations, she appeared completely comatose. It wasn't until the patient actually woke up the next day that we abandoned our opposition to continued treatment.

Three months later, I was fortunate to meet this bright girl who did suffer permanent brain damage leaving her totally blind, but she was perhaps the most grateful patient I have ever encountered. Unfortunately, her gratitude towards her medical team was sorely misplaced, we had many meetings and consultations on how we could convince the family to withdraw care and let her die "in dignity." Never once did we question whether we were correct. We were flat out wrong even with all of our high tech assessments, high paid specialists, MRI's, CT's and brain wave tests.

The NY TImes article could truly be the poster child of a new medical ethic that the Renal Physicians Association (RPA ) calls shared decision-making. The NY Times article links to an outdated version of this RPA treatise from 1999, but RPA has several updated versions including the latest from October 2010.

Shared decision-making is now called the accepted method of ethical decision making by the RPA, but it is not in the least similar to the ethics of patient autonomy where the doctors fiduciary duty is to educate to the point of understanding so that the patient and his family or legal representative can make an informed decision. Instead, it is truly the basis for taking a step backwards in time to when doctors made all of the decisions themselves.

Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis

Clinical Practice Guideline, Second Edition

Recommendation No. 8

Establish a systematic due process approach for conflict resolution if there is disagreement about what decision should be made with regard to dialysis. Conflicts may occur between the patient/legal agent and the renal care team about whether dialysis will benefit the patient. Conflicts also may occur within the renal care team or between the renal care team and other health care providers. In sitting down and talking with the patient/legal agent, the nephrologist should try to understand their views, provide data to support his/her recommendation, and correct misunderstandings. In the process of shared decision-making, the following potential sources of conflict have been recognized: 1) miscommunication or misunderstanding about prognosis; 2) intrapersonal or interpersonal issues; or 3) special values. If dialysis is indicated emergently, it should be provided while pursuing conflict resolution, provided the patient or legal agent requests it.

On the surface, this sounds like a reasonable approach, however, the term "due process" introduces a term outside of medical ethics, this is a legal term.  Unfortunately, there is a dance between ethics and the legal world that is always in a state of evolution. Often the legal world follows the lead of the ethics world. If the due process in place that has criteria set by the state or other legal authorities for delivery of health care, then that due process over time could set up situations where care is requested, opposed by the health care team and denied by the paying authority whether private or state run. Granted we are not there today, but again, we are talking about slippery slopes that lead to inevitable outcomes. In a world today filled with many differing health care and legal systems, we need go no further than last  months news to see where the ethics of "shared decision-making" coupled together with specific "legal" criteria set in due process could lead here in America:

An Update on Baby Joseph: Expected to Leave Hospital soon for Pediatric Specialty Hospital

Baby Joseph was the center of an intense legal battle sparked by the decision of physicians at London Health Sciences Centre in Ontario, to ignore the parents’  wishes for a tracheotomy to make it possible to take their child home to be with his family for whatever time he had left.

Physicians at London Health Sciences Centre diagnosed the child as being in a persistent vegetative state (PVS) and said a tracheotomy would be invasive and futile treatment. Their plan was to take Baby Joseph off a ventilator and feeding tube. In the culmination of a lengthy series of legal maneuvers, the parents, Moe Maraachl and Sana Nader, moved their son on March 13 to SSM Cardinal Glennon Children’s Medical Center with the assistance of lawyers and Priests for Life.

When I first heard of the sketchy details of this case, I thought to myself that the parents were simply unreasonable and in denial. But then some of the details did emerge that the parents request was to simply have a tracheostomy tube placed so that they could take their child home to die. The cold hearted, in my opinion, medical team refused this very reasonable request and set up the entire confrontation. Simply put, if the medical team had listened to the heart felt request to allow the family the means of removing the child from the ventilator and place on hospice in the home, we never would have heard of this entire event. Instead, the medical ethics in place in Canada today is such that the autonomous decision making of parents of a terminal patient hoping only to correctly in my mind take their child home to die in the arms of his parents was soundly refused and openly opposed by his medical team who deemed a simple tracheostomy that take s only a few minutes to perform as futile.

Sorry, to sound personal, but that was an erroneous decision made by doctors in Canada who usurped their authority in denying a commonly performed procedure for many terminally ill patients on a ventilator.  Palliative tracheostomies are often used as a means to allow patients to enter hospice in their own home. I am appalled by this entire episode of Baby Joseph and saddened that the RPA has actually laid the ethical framework for the same type of events to happen some day here in America. Baby Joseph's case inspires checks and balances against that old ethics called physician paternalism, it was wrong 30 years ago, it is still wrong today. Perhaps the RPA's commitment to shared decision-making in part explains the general lack of attention to informed consent by the American nephrology community. In other words, they are already making those decisions for us today.

http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html

[Deanne]

This brings to mind my recent experience with a transplant center. They decided for me that I needed someone to attend each of my appointments, beginning now for the pre-transplant evaulation, and that if I showed up for an appointment without this person, I would be turned away. I wasn't allowed any part of the decision to have someone attend my appointments even though I know it wouldn't be good for my mental state to have an assortment of friends listening to my medical information, and there was no medical reason to have someone sitting through my appointments with me. I hate talking about my medical issues with anyone outside of the medical industry. I was very stressed out, losing sleep, on the verge of panic at the very idea, and probably driving everyone I know up the wall with my rants. I talked to them for about 2 minutes on the phone before they gave that mandate, so they're not even making decisions based on knowing what I really need. 

I'm thankful I have a second transplant center in the area and so far things are looking better with the other center.

[Sax-O-Trix]

Deanne - I never once took anyone with me to a regular neph or pre-transplant neph appointment.  Not once.  I even went to the PRAT testing a week before the transplant by myself.  I have taken my sister with me twice to post-transplant appointments because I think she needs to hear what is going on with my transplant to better help me when she can.  I'd get on board with the other center asap - I would have been peeved if my center said I had to have someone there with me.  What a huge inconvience to someone else in addition to invading your privacy.

[billmoria]

I hope none of the people on this board will ever have to make the decision to "pull the plug" on a loved one. I had to and it is a life changing experience. I am afraid that many on this board will have had the same experience or will have.
My partner got excellent treatment in 99% of the hospitals he was in. He was in intensive care for most a a full year with some time out for operations and some rehab. One hospital took action without my participation in the decision (My partner was a male and the ambulance took him to the closest hospital - not one we would have chosen). After surviving another operation they gave him a steroid that took away his speech and had him seeing things in the closets and under his bed.
My partner and I had discussed just this situation and HE had decided that he would not like to take these types of steroids. They could not ask him and their religious beliefs allowed them to dismiss me. I had power of attorney and he had a living will which declared that I was to make medical decisions if he could not.
He ended his days with me using a white board to communicate with him.
This in a country that thinks of itself as free and democratic.
His main doctors (from Harvard) did not think these steroids gave him even one week more of life. They just ensured that his last days were as miserable as possible.

[aharris2]

This is all about money.

"When Ailments Pile Up, Asking Patients to Rethink Free Dialysis" - Free Dialysis???  It is most certainly not free! throughout the course of my lifetime I have been paying into an insurance program called "Medicare" so that someday, should I need costly treatment for some medical condition, I will have provided for it. And should that be for ESRD and should it happen before I reach 65 I will benefit from that special program - not free because I have already paid into Medicare for 38 years.

I am scared to death of "shared decision-making". It is framed as a lovely concept, but in a time when bonuses are paid for keeping costs down the bottom line is that it gives those who stand to benefit financially the power of life and death over another individual. Humans are too corrupt to wield this type of power.