The mortality rate of the human species, despite all forms of medical intervention, is 100%. Given that certainty, all of us need to
help our doctors and those close to us, understand our wishes for future medical care in advance, as we may not be able to have input once we become older, sicker or mentally incapacitated.
Patients with movement disorders are no exception. Those with progressive neurodegenerative diseases (Parkinson's Disease and other
Parkinsonism, Huntington's Disease and others) have variable speeds of worsening. The goal with life planning is to establish your wishes when it is easy to do so. Having completed this, should your health
deteriorate, doctors are able to follow the path of care that you would want and not what your family decides for you or what they guess you would have wanted. It puts the family and your doctors in a
potentially very difficult situation when your wishes have not been clearly stated. This is particularly difficult and sad when family members are not of the same opinion as it can potentially tear close family
As a minimum, all of us need a Last Will and Testimony, we need to assign a Power of Attorney
who is assigned to take over the care of our financial affairs should we become incapacitated and we need to assign someone the responsibility for making medical decisions should we not be of sound enough mind to do to that for ourselves. This is variably referred to as a
Medical Power of Attorney or an Advanced Care Directive. These documents can all be changed legally, at any time, as long as mental competence is maintained. Think of Advance Health Care Directives
as a work in progress
Such a directive needs to be documented and signed. It needs to include details of the type of care you would want and what you would
not want. Examples of questions that need answers are:
If there is no chance of recovery to a reasonable quality of life would you want aggressive care continued or discontinued?
Would you want to be ventilated on a respirator ever, or only for a reversible illness?
Would you want to have a feeding tube put into your stomach through your nose, to maintain calories and weight, if you were not
able to swallow safely without the risk of choking or liquids or food going into your lungs?
What if you could no longer keep yourself hydrated by drinking enough fluids. Would you want to be put on intravenous fluids? for how long?
Would you want to be fed through the abdominal wall directly into your stomach (PEG tube)? If so how long would you want this to
go on if you were not improving?
When would you want aggressive life prolonging medical management to change to treating only temporary, reversible conditions
(pneumonia) and when would you want only a comfort care or supportive model when conditions such as pneumonia are no longer treated as you would have reached a stage when prolonging life should no longer be
a goal for those caring for you?
Do you want to be hospitalized or stay at home, or somewhere else, if you are seriously or terminally ill?
These are very important and difficult decisions and every one doesn't share the same desire. Answering these questions is a process
to be undertaken over time and not rushed. That is why prior discussion and documentation is required at a time when your health doesn't interfere with your ability to provide rational answers.
There are many unfortunate cases of patents being maintained on life support systems (ventilators in intensive care settings) for
prolonged periods with no medical expectation of improvement, simply because the family did not know their wishes and did not want to bear the responsibility of stopping medical care or thought that was what
they would have wanted. The vast majority of people when asked would not want to prolong the process of dying.