Bioethics in Brief is a newsletter of the Center for Bioethics and Humanities, committed to promoting clinical health care and health policy which is patient-centered, compassionate, and just. Opinions expressed in the newsletter are those of the authors and do not represent the position of the Center.
Family Health Care Decisions Act - FAQs
WHAT IS THE FAMILY HEALTH CARE DECISIONS ACT (FHCDA)?
The FHCDA is a New York State law that makes it easier for loved ones to make health care decisions for people who can't speak for themselves. In the absence of a health care proxy, a surrogate (chosen from a prioritized list) may make health care decisions for a decisionally incapacitated patient. The law takes effect June 1, 2010.
WHAT KINDS OF PATIENTS DOES IT COVER?
Any patient unable to decide for himself or herself unless the person has mental retardation or developmental disabilities (separate laws exist for these groups of people).
WHAT KIND OF DECISIONS MAY THE SURROGATE MAKE?
Any health care decision that the patient could make for him or herself, were the patient able to decide (competent).
ARE FEEDING TUBES TREATED DIFFERENTLY?
In general, no; they are defined as medical treatment, with the same (but no additional) protections or restrictions in the law.
IF THERE IS A HEALTH CARE PROXY, DOES THIS LAW APPLY?
No, the person chosen as the health care proxy makes medical decisions. The FHCDA applies only when there is no health care proxy for a patient unable to make his or her own decisions.
WHO DECIDES THAT THE PATIENT DOESN'T HAVE DECISIONAL CAPACITY?
Deciding whether or not a patient is able to comprehend and make decisions is generally the task of the patient's physician. As a protection, the law requires that in nursing homes, a second physician concur with the determination of incapacity if a surrogate is going to be making decisions. In hospitals, a second physician needs to determine the patient's capacity only in the case of decisions to forgo life sustaining treatment.
WHO CAN BE THE SURROGATE (SUBSTITUTE) DECISION MAKER?
If a patient has not previously selected a health care proxy, the following priority list applies:
- court appointed guardian (this is rarely the case)
- spouse or domestic partner
- adult child
- close adult friend or relative familiar with the patient's views about health care
WHAT IF SOMEONE LOWER ON THE LIST (E.G., AN ADULT CHILD) WOULD BE A BETTER DECISION MAKER THAN SOMEONE HIGHER ON THE LIST (E.G., THE SPOUSE)?
Unless the spouse is decisionally incapacitated, unavailable, doesn't want to serve as the surrogate, or designates someone else on the list, the spouse takes precedence.
I'M GAY; DOES THIS LAW ALSO INCLUDE MY DOMESTIC PARTNER?
Yes, domestic partners have rights equal to those of spouses under this law and would be the preferred surrogate, absent a court-appointed guardian or health care proxy.
WHAT STANDARDS SHOULD BE USED IN MAKING DECISIONS FOR PATIENTS UNABLE TO DO SO?
The best standard is to decide in line with what the patient would decide, were he or she able to speak for him or herself. Families might know this based on prior conversations or the patient's specific wishes, values, and beliefs.
WHAT IF THE SURROGATE DOESN'T KNOW WHAT THE PATIENT WOULD HAVE WANTED?
This is quite possible. For example, a child may never have had the ability to maturely make his or her own decisions. Or, a distant brother who does not know the patient well may be the only available person to make decisions. In these cases, the decision should be made based on the patient's best interests.
The law says this includes the following:
- ""dignity and uniqueness of every person"
- extent to which the patient's life might be prolonged, with or without continued treatment
- extent to which the patient's health or function can be improved
- extent to which the patient is suffering, and the extent to which that suffering can be relieved
- underlying medical condition or other things that a reasonable person in the patient's circumstances would want considered.
DOES THE FHCDA APPLY TO PREGNANT WOMEN?
Yes. The standards for decision making are the same; the decision should be made in line with what is known about the patient's values, beliefs, and wishes, and if that isn't clear, in line with the woman's best interests.
WHAT USED TO HAPPEN BEFORE THE FAMILY HEALTH CARE DECISIONS ACT?
Unless there was a health care proxy appointed, family members had no legal authority to make medical decisions on behalf of patients, unless there was clear and convincing evidence of the patient's wishes or the decision was about CPR (resuscitation). Sometimes, hospitals “flew under the radar screen” and allowed families to decide nonetheless. Other hospitals insisted that all life-sustaining treatment be continued, unless there was absolutely clear and convincing evidence the patient wouldn't want it. Other times, patients, hospitals, families, and clinicians went to court, but the courts often found evidence of the patient's wishes insufficient and denied the family the right to make these decisions.
DOES THIS MEAN THAT I DON'T NEED A HEALTH CARE PROXY ANYMORE?
No. Choosing the person who you think could best speak on your behalf and best knows your wishes may be a better way to ensure that your preferences are followed. This is particularly important if the person highest on the “priority list” is not the person you think is best positioned to make decisions for you.
WHAT IF THERE ARE DISAGREEMENTS ABOUT WHAT IS BEST TO DO?
Differences of opinion are not uncommon. Remember that:
- The question is not what anyone else wants done for the patient, but what the patient would decide, were he/she able to speak for him/herself.
- It is crucial that everyone involved—family, nurses, physicians, and other clinicians—are working from a shared understanding of the patient's underlying condition and what various treatments can (and can not) accomplish.
- Many hospitals have ethics consultants or committees already available to help think through and mediate differences of opinion. The new law requires that all hospitals and nursing homes have such resources available to families and clinicians when disagreement arises.