There are advance medical directives—and then, there are advance medical directives. In other words, all are not equally useful or safe.
Some—particularly of the short form variety—push signers toward refusing care. Others, take the decisions out of the hands of family. Take the “living will,” by which I mean a precise type of AD—not the common misuse of the term as a general description for all types of advance directives. Living wills allow the patient state ahead of time what is not wanted and what is. But that can be problematic. The precise circumstances often cannot be known in advance. And it is up to the doctor to determine when the living will takes effect—both deciding the patient has lost decision making capacity and interpreting how the instructions apply in the then existing circumstance. That can create a conflict of interest between patient and doctor, or require the doctor to make assumptions about what a patient might or might not want if circumstance faced is not directly mentioned in the living will. Moreover, doctors should not be patient decision makers as a general rule. Rather, they should provide recommendations and options to the person who makes the decision—just as when the patient is competent to decide.
The best AD from my perspective is the durable power of attorney for health care (as it is called in CA—it may have a different name in your jurisdiction). It allows the signer to name a known and trusted person to make decisions in times of incapacity, as well as to give general directions about future care. It also allows the designated person to obtain medical records—which can be difficult under HIPPA privacy laws. With a durable power, there is no need to anticipate every exigency, merely find a trusted person capable of making decisions according to your own values.
Durable powers are not just for the relatively old or ill. Rita Marker, the head of the Patients Rights Council (for which I am a compensated consultant), has a very good column out describing the benefits of a DPHC for college students. From her column:
This type of document is absolutely vital for every adult - young or old, healthy or sick, disabled or able-bodied. Yet, few people are aware of how very necessary this is. For example, parents of college students take it for granted that, since they are paying for their child’s medical care, they always have the right to make medical decisions for a son or daughter who is temporarily or permanently unable to do so.
In fact, without a durable power of attorney for health care, the parents of an ill or injured college student may not even be able to obtain basic information about their child’s condition - let alone make health care decisions for them. Ever since the federal Health Insurance Portability and Accountability Act went into effect, some health facilities have refused to provide information to anyone - even family members - about a hospitalized adult (anyone who is 18 or older) unless the patient has given written consent. But the person who is designated in a durable power of attorney for health care has the right to such information. Young adults can designate a parent to make medical decisions so that, in the event of a sports injury, illness or accident, someone who knows and loves them will have the authority to protect their lives and well being. That’s why a durable power of attorney for health care should be one of the necessities of dorm life.
The Council offers a state-specific durable power of attorney known as the Protective Medical Decisions Document—which instructs against euthanasia and withholding medically appropriate food and fluids. (It’s free, but a donation of $10 is requested.) Here’s how a PMDD can protect you. From the Patient Rights Council PMDD information page:
The following are some of the reasons that a PMDD is necessary:
1. Federal regulations require every hospital and health program that receives any Medicare or Medicaid funds to inform you, upon admission, of your rights regarding an advance directive. As a result, many facilities are giving patients a Living Will or Durable Power of Attorney to sign at the time of admission when you’re naturally under stress and you’re filling out other paperwork.
2. Many hospitals are instituting “futile care” guidelines which may preclude the wishes of a patient who is unable to communicate. The PMDD specifically states that the meanings of “beneficial” and “appropriate” care are to be left to the agent who knows the values and wishes of the signer.
3. An effort is underway across the country to add euthanasia and assisted suicide to end of life options. The PMDD specifically prohibits euthanasia and assisted suicide.
4. Previously, family members were automatically considered the decision makers for a loved one. This is rapidly changing. Unless you have named someone as your agent to make decisions for you if you can’t give informed consent, a health care provider or court appointed guardian who doesn’t know your values and wishes may make critical decisions for you.
5. Ever since the federal Health Insurance Portability and Accountability Act (HIPAA) went into effect, some health care facilities have refused to provide information to anyone even family members about a hospitalized adult unless the patient has given written consent. The PMDD gives your agent the authority to obtain necessary information in the event that you are unable to give written consent at the time of hospitalization.
I have signed an advance directive. Have you?