Health Care Agents: Appointing One and Being One
When would I be asked to make decisions?
Normally the agent becomes the decision maker after the attending physician
determines that the patient either temporarily or permanently lacks the ability
to make health care decisions. Many states also require that a second physician
confirm the patient's incapacity if the decision involves withholding or
withdrawing life support treatments.
What do I need to know to make decisions?
You need to gather as much information as possible about the patient's
condition. What is wrong with the patient (the diagnosis)? What is likely to
happen to the patient because of the disease or medical condition (the
prognosis)? If the doctors are unsure of the diagnosis or prognosis, you need
to know when they will know more and what they are doing to get more
Sometimes the process of obtaining information involves invasive and
uncomfortable testing, and you will need to decide if the process should go
forward. For example, you may know that the patient would not have wanted
invasive testing, or you may decide that the burdens of testing and or
treatment outweigh any likely benefits.
Therefore, information about the patient's prognosis is particularly
important. What, given the present situation, is the most likely outcome?
Although the outcome may never be known absolutely, you can ask what chance the
patient has to return to his or her previous condition, or if that is not
realistic, what is the best outcome that could be expected? The worst?
If the doctor says the patient may improve with treatment, what does
"improve" mean? To a doctor "improve" might mean survival, but
with serious brain damage. You may know that the patient would not want
treatment if that was the most likely outcome.
If the doctor says that the patient has a treatable condition, such as
pneumonia, but this treatment cannot affect the underlying disease, such as
advanced Alzheimer's disease, you may know that the patient would not want life
prolonged under these circumstances. Or you might decide that because of other
aspects of the patient's condition (for example, advanced cancer), further
treatment would only prolong the patient's dying in an uncomfortable or painful
It could be an appropriate decision to refrain from treating the pneumonia
and concentrate only on treatments that would keep the patient comfortable.
(Such treatments are commonly called palliative care.)
You also can ask the physician to describe how the patient's disease is
likely to progress and what decisions are likely to be necessary at some point.
For example, a patient with Alzheimer's disease eventually might stop eating or
become unable to swallow.
You can begin to consider whether artificial nutrition and hydration should
be given if that happens, and obtain specific information about these
treatments. If someone is very sick, it is likely that at some point they will
have cardiac or pulmonary arrest (their heart will stop beating or they will
stop breathing). Start talking with the doctor early about whether or not a
do-not-resuscitate (DNR) order should be written to prevent the use of
cardiopulmonary resuscitation (CPR).