6 Years as an Advocate

Six years ago, I left my job as a Physician Assistant in Oncology and Hematology and took the plunge: I became a Board Certified  Patient Advocate. I had been interested in advocacy for quite some time, and, working in oncology, I readily advocated for my patients and their loved ones. There are so many different ways that advocates can help, and I decided  my niche, would be  working with those newly diagnosed with cancer and helping them navigate the healthcare system without the use of Dr. Google and well-meaning friends.

 Over time, it has morphed, and while I am still working with cancer patients, I am working more with people with impending death and their loved ones, as well as people with chronic, often terminal diseases. We work on their Advance Directives, which are so vital. Many people do these along with their wills with their attorneys, yet if you ask most attorneys, unless they are elder care attorneys, they don't "do a great job." To do a thorough job with advanced directives means explaining and understanding all of the moving pieces, and it can take hours to have an Advanced Directive where everyone is "happy." As a PA, I have stood over too many bedsides with loved ones arguing as to what "Mom really wants," i.e., to be at my daughter's wedding six months in the future, so "let's put in a feeding tube." That's why it is imperative to have the conversations.

Recently, I have found my true calling, preparing everyone, regardless of age, for the inevitable: death. It can be in twenty, thirty years or later today, and we all should know what our loved ones want and what we want. This past week I went to a "Death Over Dinner" Zoom, which was fascinating and provocative. It is something I plan to get involved with. We should not have these conversations every night, but we need them.

My mother died in 1969 of rheumatic heart disease. She knew she was going to die; the doctors had told her and my father that the prognosis was poor, but it wasn’t a dinner (or any) conversations than.  We just couldn't talk about it, not then. I was 16, and my mother tried to discuss it the best she could, but it was hushed-up.  How well she would have done in 2024; she would have led the pack!

She told me, "When I die, I don't want the funeral at Bernstein's; I don't like his mustache. I want it at Apter's." So Apter's it was. She would call my brother and me in to her room when she was in bed and talk "because I may not make it through the night." She was a woman before her time. She really was; she hid wheat germ in milkshakes, raisins in chocolate pudding, and had liver and onions weekly.  If only she was here now, but she is not, so I feel I need to continue what she started.

What do you foresee about your death? Do you want to die at home? Do you want to be alone?  We will all die, let’s make it as positive as possible.

Let's talk.