A reader writes:
Your post on palliative care came at an especially appropriate time, as I witnessed my 80-year-old mother’s quick decline and death just last week. She spent almost three weeks in a local hospital, where it became clear to me and my sister that while she was dying of lung cancer that had metastasized to her liver – but no doctor really wanted to tell her that. Luckily, about three days before she died, she was transferred to Calvary Hospital in the Bronx where they specialize in end-of-life treatment.
What a difference between the two hospitals.
In the first one I had to take the reins in relaying the information to my mother. This was very difficult, since I am not a doctor and did not fully understand everything about her medical situation. But after having her primary care physician tell me on the phone that he wasn’t sure she was accepting of her situation because she became emotional when he brought up that there were no treatments she could tolerate, I knew I had to tell her. It seemed to me that it was the doctor’s discomfort with delivering this type of news and dealing with the patient’s reaction that was hindering us moving forward in a way that respected my mother. She was dying, but she was in no way cognitively impaired or incapable of understanding this.
I hung up the phone with her doctor and took my mother’s hand and laid out the situation as best I could. While it was difficult, she was relieved that someone was telling her what was going on. When I finally insisted that a palliative care person come to speak with her the next day, the woman commented on my mother’s straightforward manner and acceptance of her death. My mother was a no-nonsense woman and her understanding of her situation afforded us the opportunity to have meaningful conversations before her death. This has helped me enormously in my grief.
I imagine if she had been transferred to Calvary earlier in her ordeal we could have had more support in our journey. From the moment she got there, the staff was communicative and respectful of the dying process, unlike her community hospital. I suppose it is our culture that contributes to this inability to deal with death; Americans seem to see death as some type of failing or surrender. But like Peg Nelson describes in your post, it just doesn’t need to be that way. As difficult a time it was, I felt I was honoring my mother by being by her side and helping her face what she was going through. I think it helped us both let go.
Update from a reader:
When my mother was dying of lung cancer some years back, she elected to end her life before the cancer killed her. A doctor said afterwards that she would have lived another week to a month, with most of that time spent in a coma. I knew in advance what she planned, read the books, talked to doctors and sat with her while she took the pills that killed her. It was a very peaceful death and, while we all miss her passionately, neither I nor any other member of my family have any regrets about her choice. We had all been more than willing to care for her but knew her well enough to know that the spiraling loss of control would have made her last days a misery.
What has fascinated me about the aftermath is that having knowledge of this has made me a stop on a peculiar unofficial underground railway. Friends, friend’s parents, friends of friends of friends (strangers) have called me wanting to know what this experience is like. I have so little to offer them: compassion, where to look for information, my story. Not enough. We are all going to die. It would help many if we could talk about it.