Ruben Betancourt, 72 years old, was unconscious following the dislodging of a ventilator breathing tube after surgery at Trinitas Medical Center, which resulted in anoxic encephalopathy. He was readmitted to Trinitas in July 2008 with a diagnosis of renal failure. He received dialysis treatments, remained on a ventilator, and feeding tube. The physicians at Trinitas diagnosed Mr. Betancourt as being in a persistent vegetative state and told the family of their intention to stop dialysis and allow him to die.
The Superior Court in New Jersey held a two day hearing and thereafter enjoined the hospital from withdrawing life support without the consent of Betancourt’s daughter, Jacqueline, who was appointed his guardian. Mr. Betancourt remained at Trinitas, on the ventilator, receiving dialysis and on a feeding tube until his death in May 2009. The case nevertheless went forward because the attorneys argued that this dilemma is a common occurrence and needs to be clarified by the court. Oral argument was heard in May 2010. The opinion is pending.
The Wall Street Journal has followed this case, and The Huffington Post ran a column by Jacob Appel yesterday regarding questions of end of life duties and responsibilities of physicians, patients, surrogates, ethics committees and hospitals. The case is Betancourt v. Trinitas Hospital – and should be decided by the New Jersey Court of Appeals any day now. Mr. Appel casts the issues in this case as an economic problem:
“Are there circumstances in which patient autonomy, as expressed through surrogates, should be overruled in the name of resource allocation and/or sound medical practice? If such rare circumstances ever exist — and I believe that they do — then Betancourt v. Trinitas offers an excellent vehicle for the courts to clarify the circumstances under which hospitals may override patients and families.”
Firstly, neither this case nor the appeals court opinion should be used as a ”vehicle” to establish policy. Courts do not make policy; rather they apply and interpret the law. The issues here do not pit life v economics or medical care v rationing of scarce resources. It, rather confronts the proper application of the law – which is quite clear – that the decision rests with the patient. Doctors practice medicine they do not make personal decisions for other people. Nor do courts. The patient’s autonomous decision is a fundamental right that cannot be ignored and should trump other important but not fundamental rights guaranteed by the by the US Constitution.
The appropriate question that should be before the court is whether or not the surrogate decision maker, in this instance Mr. Betancourt’s daughter, was actually carrying out the duties and responsibilities of a surrogate. The job of the surrogate requires that he or she be able to, and actually does, understand the medical issues applicable to the treatment decisions that must be made. Without this understanding and the risks and burdens for the patient, the surrogate does not have the capacity or ability to speak on behalf of the patient.
Similarly, the physicians caring for this patient are required to place before the surrogate all medical evidence.
1. CT and MRI scans,
3. All respiratory records and any potential to wean him from the ventilator.
4. Does he have a tracheostomy?
5. Are his serious bed sores being tended to or ignored?
6. What infectious disease is he suffering from?
7. Is he responding to antibiotics?
8. To what degree was his brain damaged due to anoxic encephalopathy?
9. Has the physicians and or hospital discussed the events leading up to the hypoxic event, or hid from it because of concern of liability.
10. Has all evidence been preserved, provided to the surrogate and brought before the court
11. Has the ethics committee reviewed the case? If so where is their written report, findings and recommendations?
12. Have bioethicists and or lawyers participated in conferences with physicians and the surrogate?
The surrogate cannot perform the job of a surrogate in the dark. This is where detailed records of the conversations and meeting held with the surrogate, family and physicians and reports from the ethics committee are critical to the surrogate’s understanding the issues in order to make a legitimate decision.
However, the issue of the adequacy of Ms. Betancourt’s conduct as a surrogate is not an issue brought before the court and will not therefore be decided on that question. The surrogate stated that Mr. Betancourt is a fighter and would want to fight on. But, fight on toward what purpose? The question here is whether this patient would want to continue to receive arguably futile care because of some realistic hope of survival, or to sustain life because of some religious conviction notwithstanding the diagnosis of a persistent vegetative state, or other values. Merely proclaiming that her father would want to “fight on” and keep his body alive under these circumstances is not enough to establish that she has been fully informed – no different from what every patient in this country deserves from their physicians.
Such dilemmas are not uncommon. Indeed they occur thousands of times every day in this country and throughout the world. Yet, the appeals court questioned this point at oral argument. And, unless it is a common question that needs to be clarified, then there is no reason for the court to issue a substantive opinion.
This case needs to be adjudicated on the facts and admissible evidence and not be made in to some cause célèbre or some “vehicle” to push other’s policy agendas.What must be understood by all is that end-of life cases are deeply personal matters requiring both compassion and forthrightness and transparency by all.