Hospice and Parkinson’s and The Changing Conversation About End of Life

logo_fs_caring_129In the past year or so, PDF has seen an increasing number of articles broaching the topic of end-of-life planning — how to talk with a person about his or her care, the role of the family, whether drastic life-saving measures should be taken and whether it is preferable to spend those last days home or at the hospital.

Just this week, Barron H. Lerner, M.D., was the latest to weigh in on the topic of end of life with his piece, Overruling My Father, appearing in the New York Times. Dr. Lerner, a physician at NYU Langone Medical Center, who is perhaps best known for his authorship of “The Breast Cancer Wars,” turns his attention to Parkinson’s disease. And he reveals his and his mother’s decision, based on his father’s previously-expressed views, to choose hospice for the end of his father’s life. (He reports that his father, Dr. Philip Lerner, passed away in hospice in 2012.)

End-of-life planning — which includes not only care, but also finances, legal issues, wills, and the role of the family — is a difficult topic and one most of us might not want to think about, let alone talk about. And it isn’t often one discussed in relation to Parkinson’s. After all, Parkinson’s isn’t terminal. People can live with the disease for 20 and 30 years and are often diagnosed when they are active, and otherwise healthy. Thus, end-of-life is not something a newly diagnosed person needs to, or should necessarily, think about immediately after diagnosis.

But it became clear to PDF several years ago that many in our community were reaching advanced Parkinson’s without knowing their options. And, since we know that information is power, we decided to do something about it, to encourage the community to do three things when it comes to end-of-life: find information, have a conversation and make a plan.

Why? As some of our nursing colleagues point out in one of our educational resources, hospice and other alternatives are often seen as, “giving up.” But care options for end-of-life, when chosen carefully, can provide a quality, peaceful environment for a person with Parkinson’s and his or her family.

Equally as important, planning for end-of-life empowers us to follow the wishes of the person living with Parkinson’s disease. If we ask a loved one what he or she wants, in their younger and healthier days, then when the time comes, we can honor those wishes.

As an organization that believes in patient empowerment, PDF thinks this is critical.

In recent years, we have developed several resources (see below) that deal not only with hospice, which is simply one piece of end-of-life planning, but also with issues related to the financial, legal and emotional aspects of advanced PD and end-of-life planning. Find these below and if you have questions not answered by these resources, contact our HelpLine at (800) 457-6676 or info@pdf.org from Monday through Friday, 9:00 AM ET to 5:00 PM ET.

We urge you to inform yourselves, and to begin the conversation and the planning. Even if it’s hard to talk about.

PDF Resources

One thought on “Hospice and Parkinson’s and The Changing Conversation About End of Life

  1. Peggy Willocks

    End-of-life planning is important to discuss even if one doesn’t have a chronic illness like Parkinson’s . Knowing that you have done your best to comply with your loved one’s requests is comforting. There is one request that failed to be mentioned and must be acted upon in a timely manner upon your loved one’s passing, and that is whether or not to donate the deceased one’s brain tissue to research. Just as we cannot have new medications and therapies without trial participants, we can never learn more about the mysteries of the physiological brain without donated tissue.


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