BERNARD W FREEDMAN, JD, MPH
A a 74-year-old patient who suffered a stroke was in a coma and on a ventilator at a Los Angeles tertiary medical center. He had been on a ventilator for one month. Although he was not suffering from an underlying terminal illness and was not in a persistent vegetative state his physicians demanded that his son consent to terminal extubation, withdrawing the ventilator, and allow his father to die. His son wanted to wait. He explained that his father would want to continue treatment and be given every opportunity to survive and regain consciousness. The son decided it would be best to wait and see if his father would show any signs of coming out of a coma, or progress into a persistent vegetative state. Some family members were coming into town in a few days and wanted to gather more information and to discuss options. For this patient’s physician, however, waiting was not an option. Not even a few days. In addition to dealing with his father’s illness the son was subjected to belligerence. He was threatened. He was given an ultimatum. He had 10 days to get his father out of the hospital or his father would be removed from the ventilator, despite his protest, and allowed to die.
In California, a hospital has the right to refuse to provide what they believe to be “medically ineffective health care” (Probate Code Section 4735). If the hospital refuses to provide further care they must “immediately make all reasonable efforts to assist in the transfer of the patient to another health care provider …” (Probate Code Section 4736).
The discharge office advised the son they could not find any facility “that will take him.” The son located three skilled nursing facilities willing to take his father. However, they would only do so with a tracheostomy in place. The son asked the hospital to perform a tracheostomy so his father could be transferred. The physicians, with the support of the committee chair, and participation of hospital attorneys, refused.
On day 7 of the 10-day inflexible window, the son found a hospital that would take his father, albeit intubated. However, the transferee hospital advised that it would take 5 days to make the transfer, possibly exceeding the 10-day window. Accordingly, a repeat request was made to allow the time for transfer. The son was told that his father needed to be out by the 10th day. Though it is be extremely unlikely that the physician would order extubation, especially with the transfer underway, the intimidation efforts nevertheless persisted.
What were the hospital and primary treating physician’s options under the law?
1. Follow Probate Code Section 4736 “immediately make all reasonable efforts to assist in the transfer. In this instance this would mean placement of a tracheostomy to facilitate the transfer or extend the time for transfer, while continuing to provide excellent care to the patient and compassion to his family.
2. If a physician or hospital is of the opinion that a surrogate decision maker is not acting in the best interest of the patient, they can ask the court to relieve him or her as the decision maker. (California Probate Code Section 4766(c). Yet, lawyers for the hospital knew that such a request to the court would require delay and disclosure of the underlying facts, probably including medical records for review and declarations under oath from the consulting physicians supporting their recommendations to terminate life sustaining treatment. Lawyers for the hospital chose not to bring the facts before the court.
3. Buy some time. Allow some time to pass to follow the progress of the patient as the son requested. Allow for family to have some input.
4. Tell the patient’s family that they could petition the court under California Probate Code Section 4765, to issue a temporary stay of terminal extubation and order a review of the medical records and obtain an independent second opinion from reputable physicians.
5. Continue to threaten and intimidate the patient’s son and family.
The physician, hospital attorneys and the chairman of the ethics committee chose option number 5.
By not advising the son and family of their right to demand court review, the primary treating physician, with the support and/or direction from the hospital, and backing of the hospital lawyers, chose to keep things in the dark. Instead, they choses to resort to repeated unnecessarily cruel threats. The patient was successfully transferred to another medical facility.
This case is not an isolated incident. It is commonplace. It has been reported that between 40,000 and 60,000 patients who have had a severe stroke are terminally extubated, per year. They occur in well-respected large tertiary medical centers as well as community hospitals.
In 2005, JAMA (Journal of the American Medical Association) concern was expressed that potential biases existed in cases of patients suffering from a cerebral vascular incident. A higher proportion of stroke patients were terminally extubated as compared with other types of patients. (JAMA, August 10, 2005—Vol 294, No. 6, Prognosis and Decision Making in Severe Stroke)
“The proportion of all ICU deaths preceded by withdrawal of life support, which include individuals with cerebrovascular disorders, ranged from 0% to 79% in one study and 1.7% to 96% in another. This marked variation has raised concern because it may reflect care decisions insensitive to patient preferences. Supporting such concerns are emerging data about the lack of evidence regarding prognosis after a stroke and that physicians inadequately communicate with families and interpret patient preferences poorly.”
It is interesting to note that this study identified certain personal characteristics of physicians associated with the choice to withdraw life sustaining treatment. These included being young, white, and working in a tertiary medical center.
Additionally, they noted a bias in the manner in which prognoses in stroke patients differed from cancer patients.
“Physicians have been shown, however, to be overly pessimistic in their prediction of survival and quality of life of survivors of critical illness, including patients with intracerebral hemorrhage, which contrasts with the situation in cancer, in which physicians have a tendency to be overly optimistic in their assessment of prognosis.”
The authors in the JAMA study conclude that:
“Decisions to withdraw treatment when the patient would prefer living can lead to errors of underuse of life- sustaining treatments and premature death because many patients with severe stroke can survive and, depending on the severity of the deficits, partially recover with continued support.”
The purpose of the law is to avoid unconsented medical decisions that will result in death or serious injury without some review by the court. Although there is no statutory requirement that a hospital or a physician must disclose to the patient or decision maker the right to seek assistance from the court, the intent of the law is clear. The law is there to protect the patient. For most people, especially a distraught family, knowing their rights and quickly finding an attorney is not realistically possible – especially in a brief period of a few days during which one is facing the death of a loved one. Because of the unprofessional and unethical conduct of the physicians, the rights of this patient remained hidden. The physicians and hospital violated their patient’s trust. They abandoned their patient and inflicted significant emotional turmoil on their patient’s son and family and acted contrary to the high standards of professionalism in the practice of medicine.