Recently I made a late-night visit to a hospital Emergency Room. Fortunately, it wasn’t anything too serious. Upon discharge I was given a lot of paperwork to take home with me. Included was a booklet titled “Advance Directives and Planning.”
I appreciate that my local Emergency Department is giving out information on advance directives, which the booklet defined as “a way for you to tell your health care providers about the care you want to receive – or not receive – should you ever become incompetent.” The booklet then went on to describe different forms of advance directive, including the “living will and the health care power of attorney.
The booklet contained good information. But as I read it I thought one important question was not discussed: What happens if I don’t have an advance directive or it cannot be found? I’m writing this article to answer that question.
If you are not competent to make medical decisions but do not have an advance directive, or it is unavailable when needed, decisions will nevertheless have to be made. In that event, who will be authorized to make decisions for you and what decisions can they make? Pennsylvania has a law that answers those important questions.
Pennsylvania’s Act 169
In Pennsylvania our law creates a hierarchy of substitute medical decision makers for you. Act 169 (2006) provides for the passing of decision-making authority to your a “health care representative.” Your representative is authorized to make medical decisions for you if you lack decision making ability and have not appointed a surrogate yourself. This authority arises without court appointment or involvement.
Act 169 conforms with long prevailing medical practice. If a patient cannot make decisions and has created no advance directive, health care providers traditionally have turned to family members for treatment decisions. A close family member is allowed to exercise “substituted judgment” on behalf of the patient.
Family members are considered to be in the best position to know what treatment decisions the patient himself would make if competent. And resort to family decision making for incapacitated patients usually does provide decision makers who are concerned and available.
However, default decision making by family members is not without some problems and risks. Conflicts among family members are possible. The most knowledgeable surrogate decision maker may not even be a member of the family. And family members may make decisions based upon ignorance, a desire to end family distress, or downright bad faith and ill motive.
Act 169 gives your representative very broad decision-making process authority. He or she (or they) can make virtually any health care decision that you could make yourself if you were competent. However, a representative may not decline health-care necessary to preserve life unless the patient is in an end-stage medical condition or is permanently unconscious.
Here is the substitute decision-making hierarchy established by Act 169.
(1) Designation by the Principal. An individual of sound mind may, by a signed writing or by personally informing the attending physician or the health care provider, designate one or more individuals to act as health care representative.
(2) Designation by Default.
If a higher priority decision maker is not reasonably available, the Act specifies that any member of the following classes, in descending order of priority, who is reasonably available, may act as health care representative:
(i) The spouse, unless an action for divorce is pending, and the adult children of the principal who are not the children of the spouse.
(ii) An adult child.
(iii) A parent.
(iv) An adult brother or sister.
(v) An adult grandchild.
(vi) An adult who has knowledge of the principal’s preferences and values, including, but not
limited to, religious and moral beliefs, to assess how the principal would make health care decisions
The provisions of Act 169 are, in effect, a default advance directive for those persons who have not created their own. So, in most cases, there should be someone who will have the authority to make medical decisions for you even if you never signed an advance directive, or if the person you named is unavailable. But your Act 169 representative may not be the person you would want. And they may have no idea what kinds of decisions to make for you.
Conversations are Key
It is much better for everyone, patients, providers, and families, if advance directives are in place. That way you get to choose your substitute decision maker. But even signing a legal advance directive document is not enough. Your treatment is much more likely to be consistent with your wishes if you have talked with your substitute decision maker about your choices for care.
When you can no longer speak for yourself, the care you will receive will be to a large degree dependent upon the conversations you have had with your family and the people who will be caring for you. Conversations are the key to getting the medical care you want and limiting burdensome and unwanted treatments. You need to have those conversations whether or not you have an advance directive. Do this for your family and not just yourself. Let them know what you want them to do if the time comes that they must speak for you.