Physicians continue to tell patients what they would do if it were their mother. This is just another form of paternalism and disregard for autonomous decision making.
Physicians remain exceedingly reluctant to confront the difficult subject of end of life care. The New York times, on January 11, 2009 published an article, by Denise Grady, – “Facing End-of-Life Talks, Doctors Choose to Wait.” Discussing a survey of 4,074 doctors who took care of cancer patients, who had only four to six months left, but was still feeling well. 65 percent said they would talk about the prognosis, but wait to discuss end of life preferences.
Dr. Daniel Laheru of Johns Hopkins Oncology Center explained: “The natural tendency is not to provide more information about this than you have to,” – “It’s such an uncomfortable conversation and it takes such a long time to do it right.”
Yet, delaying the discussion invites confusion as to what the patient wants, overwhelming grief for the patient, family and close friends and the wasting medical resources and results in unnecessary expense. Physicians must get used to using the trajectory of disease to guide them in choosing the right time to discuss patient "preferences" and not limit the discussion to the right to refuse treatment.
As Malcolm Fisher, Clinical Professor, University of Sydney, Intensive Care Unit, explained so well: “If you don’t talk early you’ll lose your voice.”
“If you don’t talk early you’ll lose your voice.”
Built into some legislation in many states interprets “autonomy” in end of life cases as the "dignity" to refuse treatment and avoid what is termed a protracted death – but not the opposite. There is generally not an explanation that a patient may demand the continuation of life sustaining treatment and make that clear in an advance health directive. This slant on autonomy has caused some patients to be fearful of obtaining, or even discussing, advanced health directive with their own doctors, leaving their physicians without the benefit of knowing their wishes. It is meaningless and ludicrous for physicians to guide their patient with an indication of what they would recommend to their mother. Saying "if it was my mother, I would…" is an irrelevant way around obtaining an actual informed consent.
The perception by many people, including physicians and nurses, is that advance health directives are used only to refuse life sustaining care. Thus, the feared “death panels” loom in the minds of many people. Many commenting and discussing advance health directives limit their discussion to refusing treatment, chanting the slogan of a "Right to Die." This is a misinterpretation of the "Patients Self Determination Act, passed by the United States Congress in 1990. There is no "right to die," there is a right to indicate, in advance, one’s preferences for medical treatment if they are unable to make their wishes known during some future incapacity – this encompasses one’s preference to receive treatment as well.
Clinical bioethicists must work to dispel this dangerous assumption. Forms provided by States and directives provided by hospitals or prepared by lawyers must make this conspicuously evident.
It is not the job of Bioethicists to emphasize the right to refuse treatment, but instead to make clear the right to deliberate, after being fully informed on all important issues, risks, alternative methods of treatment, and quality of life expectations. It is the job of Bioethicists to educate physicians during times of conflict as to the applicable ethical precepts and legal requirements.
We should use the word “autonomy” not as a conclusion, but as a starting point, not to merely ask the patient what they want to do, or a surrogate decision maker what they think is best, but to begin a process of communication including all consulting opinions to evaluate the risk to burden of disease and quality of life. This is where we may find what is really meant by the word dignity.
So, autonomy, then, is a concept intended to inform our approach to the patient as well as a basis to respect a patient’s perception of their own life.
It is critical for us to understand the capability of a patient’s or surrogate to understand and deliberate on the medical issues. Just because someone has been named as a surrogate decision maker does not mean that that person is capable of listening, deliberating and deciding. If not, they cannot legitimately act as a surrogate and can therefore, with proper documentation, be disregarded. A second surrogate is often listed in an advance directive. Otherwise there can be an effort made to identify another person who knows the patient’s values. If all fails, the ethics committee can be convened to assist the primary treating physician.
These issues must be sorted out, not assumed. Bioethicists should be able and competent to assist or mediate most controversies, as well as assist an ethics committee in considering the applicable ethical and legal issues.
Questions for bioethicists to consider:
1. How do we educate surrogate decision makers as to their acceptable roles and duties?
2. When should we decline to follow the apparent wishes of the patient, or the stated desires of the family?
3. When is it prudent to exercise what is known as the “therapeutic privilege” and turn to a more paternalistic approach to patient care?