BERNARD W FREEDMAN, JD, MPH
The right to ignore a patient’s request to live
Mrs. C, a 60-year-old conscious, non- terminal patient requests life sustaining treatment. Nevertheless, she is deemed as” lacking capacity” to make decisions and is discharged home to die, without required ethics committee review.
Withdrawing or withholding life sustaining treatment is most often considered when a patient is close to death, when we wish to avoid needless suffering. Yet, when it comes to a patient who is conscious, not suffering from a terminal illness, and where therapeutic treatment is available to preserve life, the standard for withholding life sustaining treatment demands the highest level of scrutiny. The criteria in the law to justify terminating or withholding life sustaining treatment is proof of the patient’s intention to reject treatment that is “clear and convincing.”
One of Mrs. C’s consulting physicians contacted me expressing great concern that she would likely die without surgery and was about to be discharged from the hospital. He said: “The patient is not terminal. She is treatable with surgery. Her underlying infection can be treated. She is conscious, and I think she can make decisions for herself. This is not right. It’s like murder. Please do something!”
Her son wanted her to be discharged home, and to be provided hospice care and allowed to pass away comfortably. Mrs. C had gangrene in both feet, failure to thrive, diabetes type II, pulmonary edema, CHF, sepsis, and renal disease. The degree of amputation necessary was unclear at this point. The primary treating physician agreed to the son’s request. He had been caring for this patient for many years and said: “She has little understanding of her underlying disease.” He did not think she had the capacity to make her own medical decisions. Her son was adamant that his mother would not want to live with an amputation of one or both legs. He told me: “I just want this to end.”
One of the consulting physicians, however, disagreed with the decision to discharge and requested a bioethics consult. Under such circumstances an ethics committee review. American Medical Association ethics opinions requires review by the ethics committee in such circumstances.
The first question was whether she had the capacity to make her own decisions. If not, I wanted to know whether there was clear and convincing proof of her intent to refuse lifesaving treatment sufficient to legally justify her primary physician discharging her home to die. There was no written advance health directive reflecting her intent and no history of her wishes based on prior conversations or statements to her physicians or family. We only had the son’s statement that his mother would “never want to live like this.”
I interviewed the patient. She was conscious and not in any obvious pain. She spoke clearly, though she seemed somewhat confused. We spoke for about fifteen minutes. She told me her children’s names. We talked about her family. I asked questions such as who did the cooking at home. She appropriately described that her daughter did most of the cooking at home and which meals she preferred. Then I asked if she wanted to go home, and she said: “yes.” I asked her if she understood that she would likely need to have an amputation of one or both of her legs if she was to survive. She said she understood what I was saying and told me: “if it is needed so I do not die, yes, I want that.” I asked her a few other questions which she answered appropriately, albeit with a slow response and little emotion. I discussed this with her son who reiterated that he was sure that she would refuse further treatment “if she understood things.”
I requested a psychiatric consult to evaluate her capacity to make decisions and a neurologic consult to determine whether she was suffering from some transient mental confusion and whether she was taking any medication that might have a sedating effect that would impact her ability to better communicate or consider her options. Another consulting physician asked for an infectious disease consult. The primary treating physician ordered a psychiatric consult and agreed to arrange for neurology and infectious disease consults.
My plan was to have the ethics committee (EC) to meet with the primary treating physician, the psychiatrist, and to review reports of all consulting physicians, including the physician who requested the bioethics consult.
Other questions remained. An assessment of the level of amputation and the likely quality of life she would experience if she had the surgery and in consideration of her comorbidities would be central to the EC’s discussion. The EC would also have the option to ask questions of the family. I wanted to know whether there were other members of the family who had past conversations with Mrs. C about any wishes she may have expressed about rejecting effective treatment. There was also the question of whether other family members agreed or objected to discharging her home for hospice care and allowed to die. The EC would then consider all options and opinions. Other questions would probably be raised by the members of the EC and thereafter the EC would immediately issue a written report of their findings and recommendations.
The psychiatrist saw her first and wrote a progress note saying that Mrs. C “did not understand the nature and risks of her medical condition and therefore lacked capacity to make any decisions.” I met with the psychiatrist and explained that legally there had to be clear and convincing evidence of the patient’s intent to refuse treatment. He was not interested in discussing it further and advised that her request for the surgery could be disregarded. He stated that the patient’s son’s demands for discharge without further care were “perfectly reasonable and appropriate under the circumstances,” as her care would be an “incredible burden on the family.” I explained that the degree of burden on a family alone is not a sufficient ethical or legal criterion for ignoring a patient’s request for surgery to avoid death. Whether or not a decision-maker believes it is in the best interest of the family to refuse life-sustaining treatment does not supersede the wishes of the patient in these circumstances. Although consideration of onerous burdens on families are important and relevant, such concerns are not a legal or ethical justification for withholding life-sustaining treatment from a conscious and non-terminal patient who is asking to live.
Ethical issues & Legal requirements:
Case law, statutory law, bioethics protocols AMA ethics opinions, and medical literature have addressed alternative approaches for terminating or withholding life-sustaining treatment. Did Mrs. C have the requisite degree of understanding of her illness to make an informed decision to consent to treatment? Although she could not describe the “nature of her illness” i.e., a specific diagnosis, she was informed and did understand the “risks” of non-treatment. Although she was unable to describe the medical reasons which necessitated the surgery, she did understand that surgery would result in the loss of one or both legs but would save her life. No one had suggested that the surgery was futile treatment. It was clear that the surgery would save her life.
How much understanding should be required of patients before they lose the right to decide for themselves to live?
There was no description in the medical record of the efforts made by her primary treating physician to explain to her the nature of her disease in terms that she could understand. The psychiatrist made no record of what he asked Mrs. C, nor what her responses were. We did not at that point have the benefit of a neurology consult or the infectious disease consult which the primary treating physician agreed to set up but failed to do.
Immediately following the psychiatric consult, without notice given to me, the primary treating physician discharged Mrs. C home. Within hours she was wheeled out of the hospital by her son.
There have been various legal cases and scholarly articles on cases with opposite scenarios – where a patient refused available lifesaving treatment over the objections of their physicians and decision maker to keep them alive. In these instances, high regard is given to the decision of the patient, even in situations where the patient’s capacity might be compromised or lacking. (See Lane vs. Candura, 376 N.E.2d 1232, 1978.)
There is great hesitancy in these cases to force invasive medical treatment on someone. So, the required caliber of capacity is often adjusted downward to accommodate the patient’s choice to refuse treatment. Even when the patient’s capacity to decide may be diminished and their choice will result in their death, their decision has been respected. Should we require a higher caliber of capacity when a patient, like Mrs. C, has requested treatment to save her life?
In an article by Navin and colleagues, a patient refusing life-sustaining surgery is discussed. They describe using the standard of “informed goals” instead of requiring a full understanding of the “nature and risks of her medical condition.
” …a patient does not have to know any details about potential treatments, and they do not need to understand, appreciate, or reason about the relationship between each of those individual interventions, in order to make an informed refusal.”
Should the level of capacity required to give an informed consent be the same as making an informed refusal? Physician and bioethicist Bernard Lo, MD., Professor of Medicine Emeritus and Director of the Program in Medical Ethics at UCSF, took a similar position supporting a patient’s right to refuse lifesaving treatment:
“Even if the patient lacks the capacity to make decisions, his or her stated preferences should be given substantial consideration… it would be morally and emotionally repugnant to force interventions on an unwilling patient who cannot understand how the interventions are helping him.
Mrs. C’s consent to treatment should have been given the same level of consideration as a patient with questionable capacity who rejects treatment. It does indeed seem, in Bernard Lo’s words, to be “morally and emotionally repugnant” to ignore Mrs. C’s request for treatment required to save her life and send her home, perhaps being told by her son that she did not really need the surgery.
There were legal and ethical questions here that required serious and substantive consideration.
This is what ethics committees are for. They are comprised of physicians of different specialties, including infectious disease, surgery, psychiatry, neurology, and nursing. These doctors and nurses bring to the table a mosaic of medical knowledge and experience. ECs should also have social workers, clergy, attorneys, and lay members from the community. They bring with them an array of real-life experiences, of culture and lifestyles, customs, successes, and tragedies, some overcome and others complete failures. The EC should, to the degree possible, should also be composed of people of different racial, ethnic, gender and socioeconomic backgrounds. An ethics committee, if properly designed, reflects a deference to humanity and respect for individual self-determination. They strive to ensure transparent and ethical medical care, which not only protects patients, but also helps protect physicians and hospitals from liability and upholds the high standards and reputation of the medical profession.
The level of care provided to Mrs. C, however, was anything but transparent. She was instead quickly removed from the hospital without the benefit of an elaborate system created with great effort to protect her. It was free. No hospital bill would be generated. No insurance claim needed filing.
 Navin, MC, Three Kinds of Decision-Making Capacity for Refusing Medical Interventions. https://www.tandfonline.com/doi/full/10.1080/15265161.2021.1941423
 Bernard Lo, Resolving Ethical Dilemmas: A Guide for Clinicians