Planning for the end of life is not a prospect people welcome, yet it is one of the most important facets of managing a chronic, degenerative disease such as Parkinson’s. Many people begin to think about matters such as estate planning when they become middle aged, but most postpone discussion or consideration of decisions about end of life care until a health crisis makes apparent the need to address these significant issues. Every adult, regardless of age and health status, should have advance directives that specify his or her desires about resuscitative actions, life-extending measures such as artificial feeding, and who should make medical decisions should he or she become incapacitated and unable to do so. it is prudent to discuss these desires with spouses, partners, and family members to minimize misunderstandings and disagreements. Loved ones may find it hard to accept a desire to refuse lifesav-ing measures such as cardiopulmonary resuscitation (cPR); it is good to have these concerns out in the open.
Older people generally have already given some thought to their preferences, if only because they are likely to have had health care experiences in which they have been questioned about them or because they have experienced the death of friends and family members. Most hospitals routinely incorporate discussion of advance directives in presurgery consultations and offer standardized forms to be completed and signed (and notarized, if required). Requirements vary by state. other end of life care decisions relate more to the desired experience of dying. some people are adamant about spending the end of life at home, and others want to have the best medical care right until the end. These are very personal matters and preferences, and every effort should be made to honor them.
Parkinson’s disease is not itself fatal for most people who have it, although it can set the stage for the health problems that ultimately do result in loss of life. Many older people with Parkinson’s disease may die of nonrelated conditions such as heart failure or of pneumonia that develops as a result of aspirated food or drink. People with early-onset Parkinson’s may find that the symptoms progress to the point where they cause complete physical incapacitation. Even at the time of diagnosis, when the person is feeling relatively well and anti-parkinson’s medications are effective at holding symptoms at bay, the person should consider his or her preferences and begin discussing them with family members. This course is not giving up hope that there are yet many years of life to enjoy, but rather considering the options and making choices and decisions about them while there is opportunity to do so. This method makes the process easier for everyone and helps to assure that all family members are clear about the person’s wishes.
