Health Care Agents - Appointing One and Being One
What do I need to know to make decisions? continued...
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).
In discussing whether to withhold or withdraw particular treatments, you
should also ask the physician about the care that the patient would continue to
receive. You should expect a palliative care plan to be in place to manage any
pain or discomfort. You can consider non-hospital options for the patient's
care. For example, appropriate care might be delivered more effectively in a
long-term care facility or it could be given at home with home-care support or
If you need information from the doctor, ask for an appointment to meet and
come prepared with specific questions. Write your questions down so that you do
not forget any of them and you can make good use of the time. You can get
information and other support from nurses, social workers, patient
representatives, members of the ethics committee, and chaplains.
Medical decision-making is a process. You can make provisional decisions and
change them later. For example, you can authorize a trial of treatment, and
later, if the treatment is not having the intended benefit, direct that it be
stopped. It is perfectly ethical and legal to stop a treatment that has been
started if the treatment is of little or no benefit or is unwanted.
However, in practice, withdrawing a treatment can be psychologically more
difficult for the caregivers and the agent. It can feel as if stopping the
treatment causes the patient's death. In fact, the treatment may only prolong
the dying process, rather than prevent the patient's eventual death or improve
the patient's condition. In such a situation it can help to remember that the
disease is the real cause of the patient's death, not stopping or withholding
treatment. Sometimes withholding or withdrawing treatment does not result in
the patient's immediate death, but may make the patient's dying more