Living With Dying articles
The Making Of A Palliative Care Doctor - online extras
By Leah Carey
Jan. 31, 2017
Both Joyce Dobbertin and Mary Ready became doctors as adults after having children. Both of them chose palliative care after profound personal experiences of loss. These are their stories in their own words, edited for length and clarity.
I was in this community from the mid 80’s to the mid 90’s as a chiropractor.
I loved my work. I loved it because there was an unbelievable chance to help people feel better almost instantaneously.
When I would find serious illness like cancers I would refer them to their medical doctor, of course. And the people would still try to be back with me because they felt a bond with me. I would say, ‘No you need to be with Dr. Thompson and Elliot because they have the things that can help you.’
I did not like cutting off care like that. I hated it. That was one of the big impetuses for me to go back to medical school, so that I could help with big decisions.
When I was coming to the end of residency, one of my close friends was dying. I was on the HIPAA list, I was going to take her child. And I was appalled because I was not asked what I thought should happen to this woman.
Instead they asked this nurse who hadn’t been a nurse that long. They asked the minister. They actually did not want to hear from me.
It was really bizarre.
I went from her death to a friend of mine who had me listed as co-DPOA (Durable Power of Attorney). I said to her, ‘I cannot be in a position like that with you. I have to be able to make these decisions!’
She was fine taking the other person off and putting her on as an alternative if I couldn’t do it. But I could not be in another situation where I really felt like I knew what was best but nobody could hear me.
There were three deaths in my family in pretty rapid succession.
My uncle had CML – Chronic Myelogenous Leukemia – right before they invented this medicine that can now make it a chronic illness. He died after a bone marrow transplant failed.
He was in isolation. It was clear that he was dying. I remember just asking the doctor, ‘Can my aunt just go in there? He’s dying. Can’t she just take off her clothes and can’t she get in bed next to him? It doesn’t matter, right?’
And they said, ‘No we a have policy, we have protocol.’ I was just astounded.
There were 12 lines going in or out of his body. Plus he was intubated.
It was so sad to me that we weren’t treating him like a person. We were treating him like a disease process.
That was in March of 1993. My family didn’t tell my 93-year-old grandmother that her son had died right away. I would go up every week and see her, and they were like, ‘Don’t tell your grandmother!’
When she found out six weeks later, she was extremely upset.
We had the nun come up and she told the nun, ‘I hate God.’ And the nuns were great. They said, ‘It’s okay, God can take it.’
And then she said, ‘I’m going to stop eating and drinking. What do you think of that?’ And they said, ‘God says that’s okay if that’s what you want.’ And so my very fierce, very Irish grandmother said, ‘That’s it. I’m not going to eat or drink any more.’ She died about 12 days later.
But at one point one of the caregivers who was with her overnight took her to the ER because she was dying. She wasn’t on hospice – we didn’t know about hospice back then.
I got to the hospital at two in the morning and I had this fight with the ER doctor.
I said, ‘My grandmother is more than a series of chemistry labs. My grandmother is more than what you’re getting on her x-ray. My grandmother is a very smart, strong woman who knows exactly what she’s doing. She has made peace with God and this is what she wants. Let her out of here NOW!’
I had to be so fierce. I had to claim that territory for her.
The third death was my father’s. He had a brain tumor. We got the diagnosis of glioblastoma and I was with him for his first surgery, which he made it through. I got back to Vermont and I went to the med school library.
It’s invariably fatal. No one said that.
They said, ‘Well, we can do this surgery, then we can do this radiation, then we can do this chemotherapy, then we can do this…’
It was the first book I opened. It wasn’t like I had to do very much research. It basically said, ‘Glioblastoma = death.’
It put me in this really weird position that I had this knowledge that this was all futile, but no one was saying anything else. And how did I best support my dad? I didn’t know what to do.
About six months after the operation his oncologist stopped treating him. They didn’t say to him, ‘We stopped treating you because now you’re dying.’ They didn’t put him on hospice. They just said, ‘We’re giving you a break from treatment.’
That’s a phrase that doctors will use because they don’t really want to talk about death and dying because it’s so upsetting and so emotional.
Our family was with him on the 4th of July. He knew that if he asked, I would always tell him the truth. He was pretty much nonverbal because of where his tumor was, but he said very slowly, ‘Am … I … dying?’
And I said, ‘Yes, Daddy, you are.’ It just broke my heart that I had to say that.
No one helped me or my dad understand that.
He had a good death. But I feel angry that they didn’t ask us when they stopped his meds, ‘What do you want to do? Your end of life is here.’ He would have done things differently if people had been more honest with him about what his death was.
That’s when I knew I had to go to med school.
I didn’t want what happened to my father to happen to other people.