Developing a Plan: Who Decides
Unfortunately, difficult decisions are often required at a time when the patient and family are stressed by the illness and are exhausted.
- Should a certain therapy or treatment be continued or discontinued?
- Where should care be delivered – in the hospital, at home, or perhaps a nursing home?
- If the patient’s heart or lungs should stop working, should clinicians try to start them again by attempting cardiopulmonary resuscitation (CPR)?
You and your loved-one may face these and other difficult decisions. But who decides? Decision making works best when groups of people work together, building upon the special strengths, skills, and experiences of the team. Clinicians possess special knowledge, skill, and experience in treating illnesses like your loved-one’s. However, many decisions to be made are not strictly medical in nature. Deciding upon the best course of action often requires consideration of personal values and the living circumstances of the patient and family. This is where your loved-one and you as a family come in. Nobody understands these things like you do.
If your loved-one is a clear-thinking adult:
If adult patients are thinking clearly enough to make decisions on their own, clinicians will go to them first. Most Americans prefer to take the lead in making healthcare decisions, if possible. However, some patients may prefer that someone else, usually a family member, be the principle decision maker - even if they are clear thinking.
Even if your loved-one wants to be in charge of making his or her own medical decisions, you as family members may play a valuable role. Patients may be able to make decisions, but may still struggle to find the best decision for them and their families. You may be of great help in a variety of ways - by sharing your thoughts and opinions, by finding needed information, and simply by being there for support. Some people cope best with their own serious illnesses by really taking charge of things. They may not welcome others involvement in the process beyond general support. Others feel overwhelmed both by the illness and the responsibility for making such difficult decisions on their own. Such patients need both support and at times a coach – someone who can offer advice on questions to ask and guidance as to how best to proceed.
If your loved-one is not decisional i.e. is unable to or cannot make decisions (or a minor/child):
In some situations it will be very clear that the patient cannot make decisions on his or her own. In such a case, the doctor will try to identify someone, usually a family member, who can make decisions in their stead. If your loved-one has completed a an Advance Directive or has appointed a Durable Power of Attorney for Healthcare (DPOA), or similar document (the forms used and their names vary by state) which names a particular individual to be the decision maker if the patient is unable to do so, clinicians will go to that person first. Such forms may also document patient wishes as to the type of care he or she would like to receive or not receive under certain circumstances. If no such form has been completed or the person named in the form is not available, someone else will be sought out, usually the closest next of kin.
"Decision making works best when groups of people work together, building upon the special strengths, skills, and experiences of the team."
Clinicians possess special knowledge, skill, and experience in treating illnesses like your loved-one’s. However, many decisions to be made are not strictly medical in nature. Deciding upon the best course of action often requires consideration of personal values and the living circumstances of the patient and family.