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.