Hi all. I am an OT who works with those with SCI, ALS, MS both inpatient and outpatient. My philosophy varies dependeing upon the patient and their support- but I certainly work to maximize a person's safety and independence with their ADLs, and functional mobility. I feel like I am empathetic - I mostly utilize humor and laughter to get through some tough and frustrating times.
I am in contact with probably 75% of my former patients via email- just to chat, some to ask questions about problems, looking for resources etc. I have gotten the note or too saying " you were so damn positive it made me sick. But I am so glad now, because you were right- life does go on- not the same, but life does go on."
This brings me to my point. I had a patient with C6 quadriplegia who came to me from another rehab facility that after 4 months, left him dependent with transfers, had not even trialed learning to feed himself etc.. We had a lot of work in outpatient therapies. He was generally unnaccepting of his condition, but he worked very hard at therapy. He was very self-depracating and humorous. He really needed additional interventions to improve his success such as botox, tendon lengthening, baclofen pump etc. Unfortunately he was being seen by a physiatrist at another facility who did not respond to our requests (PT or OT). We did succeed in getting him to transfer, feeding himself, pushing the button for the elevator, drive his wheelchair without a midline drive. But we were quite stuck- more accurately he was quite stuck.
He was paying for everything out of pocket- including remodeling his condo, his monthly rent for an AFH etc. He had the kindest friend who helped with everything. Then came December 27th- he attempted suicide, but was found before he had succeeded. The form of suicide caused a cascade of medical problems, which hospitalized him for months. Once he got healthy enough to go to a SNF (the AFH wouldn't take him back for fear of a repeat), his MDs educated him on the POLST form. His eyes lit up, and he signed for comfort care only even though he had nothing that was within hospice type problems. He did have a UTI, and because of his requests he was not treated.......... he sadly passed away two weekends ago.
As a therapist I have had probably 100+ patients pass away from a variety of reasons including suicide. This just hit me particularly hard.
I guess I just wanted to share this not to give anyone ideas, but to help me process, and to help me to better understand the ramifications of the POLST form. I personally believe that people do have a right to death with dignity. I believe my friend did so, but I am sad because I saw his life as moving forward, given some help from the medical community. I also thought of him as someone with so much to give to others.
May he rest in peace and bring as much laughter wherever he is as he did with me during our therapy sessions. May he have a free body to rollerskate and dance as he used to.
Thankfully he was able to do a couple of the most important things to him prior to his death and that was 1- vote, and 2- witness an African American become president. Two very important things to him.
I will miss him greatly- and to those of you who have had therapy, please know how much you affect us, and motivate us, and give us the courage.
My humblest appreciation for what my patients teach me,
Pam OTR/L