In my residency for Family Practice some patients stand out in my memory. They are the ones that I struggled with: what was the right thing to do?
A woman in her 60s was admitted to the service. She was very disabled by a long-standing disease call scleroderma. She lived in a group home for disabled elders. I had never met her before.
She was admitted for a DVT, a deep venous thrombosis. This is a blood clot in the deep veins of one's legs, though it can occasionally be in the arms. If the clot extends above the knee, there is a risk that pieces will break off and go to the lungs. That is called a pulmonary embolus and can cause severe damage to the lungs or death.
We treat DVTs with heparin initially and then coumadin. At that time, we only had intravenous heparin. It had to run continuously. The heparin does not break down the clot; rather, it keeps it from extending. The coumadin is a tablet. Usually we keep someone on coumadin for 6 months after a DVT. Risks for a DVT are immobility, surgery, prenancy, rarely long airplane or car trips and there are a number of genes that put people at higher risk. The heparin requires daily blood draws to keep the clotting at the right level -- not clotting too easily but not bleeding too easily either. The coumadin level builds up slowly over a week. Starting with coumadin alone can worsen the clot. Now we have a twice daily heparin shot. Sometimes we have to hospitalize and use the iv heparin anyhow, because the insurance is reluctant to cover the shots or the person has no insurance.
Our lady was a fairly routine care until the nurses expressed their concern. "She isn't eating." I started a calorie count. This very much confirmed their concern. She was eating between 200 and 300 calories a day.
I spoke to her. "We are doing calorie counts and I am worried. You are only eating 200 to 300 calories a day. That isn't enough and you will not get well if you don't eat."
"I will eat more." she promised.
But she didn't. Her calorie count was no better. I offered ensure, asked her if people could bring her food, asked the dietician to talk to her. She was very sweet, promised to try harder, but the counts did not change.
Her protein levels were dropping.
I spoke to my attending, the supervising physician.
"Feed her." he said.
I offered her a nasogastric tube, to feed her temporarily. Or even feeding through the iv. No, she said. She denied depression. "Your protein level is falling," I said, "You will die if you don't eat."
"I will try harder," she said.
I thought about what I'd said. I called the Group Home and talked to the Caregiver. "How has she been?" I asked, "She isn't eating and I'm worried."
"Oh, she stopped eating a while ago," said the Caregiver, kind and unsurprised. "I think that she's dying. She has been disabled for so long. That is what some of them do." She agreed that our lady was not depressed.
My attending was talking about giving her megace, a drug to increase appetite. Instead, I called the new consult team: the end of life, death and dying team. "I think that she is ready to die and I don't think she is depressed. I think that she is in that generation that is not comfortable really saying that they are ready to die. Please see her?"
The team saw her and agreed.
I told my attending. He was surprised, but not angry.
I went to speak to her again. "We are drawing blood every day, but you can refuse blood draws. Do you want us to draw blood?"
"No." she said.
"If we do not draw blood, we should talk about stopping the heparin and coumadin. We can't get the levels right. We will stop them if you want."
"Please stop the medicine." she said.
"I will. Tell me if there is anything I can do to make you more comfortable. We will arrange for you to go home and you do not have to come back to the hospital unless you need help to be comfortable."
I saw her and wrote a note each day. We withdrew medicines and stopped drawing blood. We prepared the transport for Monday, to return her to the Group Home.
Sunday she had a very large stroke and died within 24 hours. I was sad but also glad that we had recognized what was happening. It was a very gentle passage as she slipped into unconsciousness. The tide was receding and it felt right not to try to hold her back; she was going no matter what we did. To acknowledge this and give her control and choices felt like a blessing.