Ethics Consults
The Consult Service, directed by K. Faber-Langendoen, MD, provides ethics consults at University Hospital and associated outpatient facilities. This work is funded by University Hospital and is free of charge to those asking for a consult. Any person involved in a situation presenting ethical issues may request a consult, including clinicians, patients and families, students, and administrators. For more information, review the Frequently Asked Questions.
Family Health Care Decision Act
New York's new law, The Family Health Care Decisions Act, allows family members or close friends to make healthcare decisions for patients who are unable to do so themselves, if there is not a health care proxy. The law is complicated, and somewhat different rules apply in nursing homes compared to hospitals.
Here are some resources to help understand the law:
I. FAQ for General Use
II. FAQ for Clinicians at University Hospital (includes policy unique to University Hospital)
FAQ from the New York State Bar Association
This detailed resource is frequently updated and emphasizes the finer legal points.
I. FAQ for General Use
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 is mentally retarded or developmentally disabled (there is a separate law for this group of people, passed in 2003). The FHCDA includes people of any age, including children.
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?
The FHCDA applies only in the absence of a health care proxy. If a patient has not previously selected a health care agent, the following priority list applies:
- court appointed guardian (this is rarely the case)
- spouse or domestic partner
- adult child
- parent
- sibling
- 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.
3.2.10
Prepared by:
K. Faber-Langendoen, MD
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II. FAQ for clinicians at University Hospital
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 unable to make decisions 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. If a patient has no surrogate, the law provides a mechanism with safeguards for physicians to act without consent.
Which patients are covered?
Any patient unable to decide for him or herself, unless the person is mentally retarded or developmentally disabled; a separate law covers this group. The FHCDA includes people of all ages, including pregnant women and children, both in hospitals and nursing homes. (Nursing home provisions differ slightly and are not covered in this document.)
Who decides whether a patient has decisional capacity?
In general, the patient’s attending physician. If decisions to forgo life-sustaining treatment are being made, a 2nd licensed physician (who may be a resident) needs to determine the patient’s lack of capacity.
What decisions may the surrogate make?
Any health care decision the patient could make for him or herself, if the patient had decisional capacity. This includes decisions about cardiopulmonary resuscitation/DNR, artificial nutrition, and hydration.
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. Families might know this based on prior conversations or the patient’s specific wishes, values, and beliefs. If the patient’s wishes aren’t known, the surrogate should decide based on the patient’s best interests.
Are there restrictions on end-of-life decision making?
Yes. Decisions to forgo life-sustaining treatment may only be made only if the patient has one of the following conditions:
- is terminally ill (expected to die within 6 months, regardless of treatment provided);
- is permanently unconscious; OR
- has a serious irreversible or incurable condition, and life-sustaining treatment poses an unacceptable burden.
How does the law impact minors?
A parent or guardian may make medical decisions for a minor. Attempts must be made to inform a 2nd parent (if any) of decisions made under this law. A child with the capacity to decide about life-sustaining treatment must agree with a parent’s decision to forgo treatment before this can be done. Finally, an emancipated minor is allowed to forgo life-sustaining treatment, but an ethics consult MUST be obtained first.
Who can be the surrogate decision maker?
The FHCDA applies only in the absence of a health care proxy, in which case this priority list applies:
- court appointed guardian (if one already exists)
- spouse or domestic partner
- adult child
- parent
- sibling
- close adult friend or relative familiar with the patient’s views about health care
What if two people within the highest category of available surrogate disagree? (e.g., two sons)
It would be best if an agreement can be reached based on the patient’s wishes (or, if not known, best interests). If they can’t agree, the clinician should choose the person best able to speak to the patient’s wishes and best interests. An ethics consult may be of use if this is not readily apparent.
What if someone lower on the list (e.g., a daughter) would be a better surrogate than someone higher (e.g., the wife)?
Unless the wife is decisionally incapacitated, unavailable, doesn’t want to be the surrogate, or designates someone else on the list, she takes precedence.
What if the patient has no health care proxy or anyone willing to serve as a surrogate?
Social work should confirm that the patient truly has no family member or friend able to serve. If there is no one, the attending physician, with the concurrence of a 2nd physician, may make some decisions to provide or forgo some kinds of treatment, but only under strictly limited circumstances. An ethics consult MUST be called before deciding to forgo treatment for patients with no surrogate or health care proxy.
Does this change anything about DNR law?
Yes. Domestic partners are now at the level of spouses on the surrogate priority list. Hospital DNR orders no longer need to be renewed every 7 days.
What if there is disagreement about what is best to do?
The question is not what anyone else wants done for the patient, but what the patient would want. Everyone involved—family, nurses, physicians, and other clinicians—should try to reach a shared understanding of the patient’s underlying condition and what treatment can (and cannot) accomplish. Resources for handling conflicts or questions include:
- Ethics consultants are available 7 days a week by calling the University Hospital operator; they can help resolve disagreements and clarify questions with the hospital attorney’s input.
- University Hospital policies provide more detailed guidance, including Informed Consent (C07), End of Life (E12) and Ethics Review Teams (E18) and are available online.
6.14.10
Prepared by:
K. Faber-Langendoen, MD (Director, Ethics Consult Service) and Regina McGraw, JD (Senior Counsel)
University Hospital Policies
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