Recently, I wrote about a thought-provoking article, “How to Die: What I Learned from the Last Days of My Mom and Dad,” which was featured earlier in June in the print issue of Time magazine. That blog post was brought on because my father, who is a subscriber, came to me and said, “You need to read this!” Well, I did and decided to write the first blog based on my 86-year-old father’s impressions of the article.
My caregiving thoughts on Joe Klein’s “How to Die” article
And I promised that I’d provide my own thoughts in a future blog post based on my own caregiving experience. So here goes:
1. I appreciated the visibility of the doctors mentioned in the article and the active outreach to families.
I found this to be counter to what we saw at the nursing home where my mother lived. Her primary care physician, who was the facility’s resident doctor, came and went to the nursing home when it was convenient for him. So when it was no longer feasible for Mom to travel to an office visit, we lost all contact with him. Instead, we ended up having to depend on the medical staff at the nursing home for all information on Mom’s physical care. While we trusted them, I would have preferred to have received regular updates from the doctor about Mom’s health status.
2. I applaud the Gesinger Medical Center’s team approach.
We didn’t see that in Mom’s case. Her care seemed very disjointed. For instance, her pulmonologist (who was recommended by her primary care physician and who Mom saw regularly over a two-year period from 2005-2007) had no idea that she had been hospitalized in 2006 for a respiratory infection. We ended up being the ones to tell him during a regularly scheduled appointment. I would have assumed that the information about her hospitalization should have come from Mom’s primary care physician, but obviously, it didn’t. Oh, and the hospital was right next door to the building where the pulmonologist had his office.
3. Finally, I agreed with Dad in that I appreciated how Geisinger’s doctors who were featured in the Time article had patient but honest conversations with family members to help them understand the ramifications of their decisions.
We almost came to the point of having to make an important decision about a feeding tube for my mother when she became unable to eat solid food due to her Alzheimer’s disease and chronic obstructive pulmonary disease. While she was switched to pureed foods, we never were approached about having a conversation with her primary care physician about what we should be thinking about if Mom’s swallowing issues worsened.
Fortunately, we never reached that point due to Mom’s death several months later. However, my gut instinct tells me that we would have faced a decision prompted by a crisis, thus leading to an emotional decision based instead on guilt for “pulling the plug” on her life. Fortunately, Mom had shared her wishes ahead of time, but I think that doctors need to start forcing this conversation with caregivers so that in a time of crisis, they can make an informed decision.Posted in Caregiving | 1 Comment »