By Steven Reichert, MD, Director of Palliative Care, SBH
Mr. B is an 80-year-old man with a history of prior stroke, dementia and chronic kidney disease who is admitted to the ICU from home with aspiration pneumonia, respiratory and renal failure. He is intubated in the emergency department and after several days extubated. His baseline health status is poor. He is bed- bound, unable to communicate other than basic nonverbal gestures and had been taking increasingly smaller amounts of food and liquid at home.
He had two prior admissions 14 months and two months prior for similar episodes. After each episode and a prolonged hospital course he returned home to his family. At home, he has 24-hour home health aides as well as the support of his very large family (10 children). During prior hospitalizations, his family was given information regarding establishment of a health care proxy and urged to discuss long-term goals of care and end-of-life wishes. Although no advanced directive exists, one of the children shows the treating team an older video where the patient rejects the initiation of hemodialysis. The patient’s current situation is tenuous. While he is off of the ventilator, he is dependent on a noninvasive ventilator much of the day. He now has end-stage renal disease and is unable to swallow. While intubated on life support, three of his children have signed a DNR order, however, once extubated, they revoked the DNR order.
Discussions with the children are fragmented. While many come to visit, never are they together. Repeated requests for a group family meeting are fruitless as they cannot agree on a date or time to gather. The opinions offered by the children differ widely. Some favor a pure comfort care strategy with hospice placement, no artificial feeding tubes, a DNR order and no dialysis. Others request a treatment plan including life support, dialysis and a feeding tube. The patient lacks capacity for decision making and no Health Care Proxy had been appointed.
The treating team is confused and frustrated by the inconsistencies in decision making on the part of the children. Knowing the patient’s prior expressed wishes to not initiate dialysis and the feelings of some of the children, the team suggests a comfort care strategy, but other children forcefully object and dialysis is initiated and placement of a temporary feeding tube is scheduled. An ethics consult is called.
When patients lack the capacity for medical decision, making the responsibility lies with an appointed Health Care Proxy (HCP) or, in the absence of a HCP, a surrogate decision maker. A Health Care Proxy can only be selected by the patient and must include a legal form specific to the state in which the patient lives. The form requires a patient with capacity who designates a person to make decisions on their behalf only at times when the patient is unable to make their wishes known. The form requires two witnesses (none of whom can be the HCP), but does not require a lawyer, doctor or notary. In the absence of a designated HCP, New York State law outlines a hierarchy for surrogate decision making. Highest on the list is a legal guardian followed by: spouse/domestic partner, child if over 18, parent, extended family and, last, a close friend.
A Health Care Proxy or surrogate must be willing to make decisions, be available at a reasonable time to make decisions and act, not as they wish, but as they understand the patient’s wishes regarding medical decision making. For example, if the patient had completed an advanced directive such as a living will or Medical Orders for Life-Sustaining Treatment (or MOLST) form, the HCP or surrogate should follow those instructions.
In this case, the patient had not designated a HCP, nor completed a written advanced directive which left decision making to his large family. The only evidence of his wishes appeared to be the video when he stated he did not want dialysis. Given that wish, the treating team is concerned that the initiation of dialysis, placement of a feeding tube and full code status in the setting of a man nearing end of life would not be consistent with his wishes.
As the patient does not have a HCP and has many adult children, all of the children serve as equal surrogates. How then should the treating team handle this fractured family? Ethically, the team should try to respect the patient’s autonomy for decision making; however a single video refusing dialysis in the past is likely not adequate evidence to ignore the wishes of some of the family to pursue life prolonging care. While the argument could be made that the most beneficent course of action would be to pursue comfort care, a significant portion of the family feels that the most beneficent course would be to prolong life, giving the patient a chance to live and recover.
How to resolve this issue? One option would be for a member of the divided family to retain legal representation and ask a judge to designate a legal guardian. While the hospital could potentially do the same, it would be imprudent to assume that role in the middle of a family disagreement. In the end a surrogate (or in this case multiple surrogates) must be available and willing to make decisions. Attempts at organizing a large family meeting are unsuccessful. Over the following weeks, the children who are available and vocal on a daily basis are those who favor aggressive life sustaining care. The other children who would potentially serve as surrogates and who are not in favor of aggressive care no longer voice an opinion.
This case outlines the importance of conducting a discussion with family regarding end-of-life wishes prior to a medical crisis. Had the patient designated a HCP or at least made his wishes known to his large family, discord amongst his children could have been avoided and the treating team could feel comfortable knowing that his autonomy regarding end-of-life care was respected.