A woman in her early 40's with two young children at home had a kind of leukemia that was very aggressive -- her doctors were surprised at how aggressive it was. Our palliative team was brought in to work with her.
When we met her she was here hospitalized at Mt. Sinai and she had already undergone several different lines of chemotherapy. The treatment wasn’t working, and the disease was getting worse.
Everyone really felt like she was going to die regardless. Many of her physicians didn’t want to give her the chemotherapy. They thought the burden far outweighed the benefits. She kept insisting that she wanted it. Her doctors were concerned it was going to cause a lot of suffering and the end was going to be the same. They thought we could either keep her comfortable and let her die at home very peacefully, or she could die in the hospital undergoing chemotherapy and be uncomfortable.
In this case the palliative care team was called in because it was clear she had advanced disease and it was our job to figure out if there was anything we could do to help her. I explain to patients and families that we do three things: One is we treat pain and other symptoms; two is we translate “medicalese” back into English, that is we make sure patients and their families know what the medical plan is; and three, when folks are ready to leave the hospital, we help figure out the best plan and make sure they get the best services they need. Palliative care is not only about end of life care, and it’s not just about care for people who are dying.
We sat down with her and the discussion very quickly got pretty intense. I begin all these conversations the same way: How are you doing? And then, tell me what your understanding is of what’s going on. One of the things we do is try to figure out what patients understand and see if we can help clarify things. It became clear very quickly that her understanding was crystal clear. She absolutely understood how advanced her disease was. She was very intelligent, very in touch with her own medical care.
She said "I’ve been noticing the treatments aren’t working. I’m noticing I need more and more chemo. I understand that it may not work. But I have hope." I said, "Tell me more about that." She immediately turned and pulled out this picture of her children, who were 12 and 9. She said "You know I have to do this for them. I take care of them, you know. If I die, who’s going to help them with their homework? Who’s going to teach them how to stick up for themselves on the playground when someone makes fun of them? Who's going to make sure that they eat dinner and that they have clean laundry?" She also said her daughter was about to graduate from Junior High and she wanted to be there for the graduation.
It was interesting to see how her expectations were changing from day to day. She was very in touch with her illness and knew exactly what was going on. The key piece of information that everyone needed was that she understood. She said over and over "I don’t care what happens to me. I don’t even care how much I’m suffering if there’s any chance." We were talking about way less than 1% but she said if it’s anything more than zero, then I want to try this.
We went back to her medical team. I think they were still feeling like the burden (of the treatment) outweighed the benefits. But it was clear the patient understood. Every patient makes a decision differently. It’s really hard to argue with a patient when she’s holding the picture of her two young children and says "You know, I have to do this for them." She felt like this was her only option, so she got the chemotherapy.
We made sure she was very very comfortable and that any symptoms that she had were well managed. But she died a few days later.
We have a pretty big team. We have docs, nurses, social workers, a chaplain, a massage therapist and we just spent as much time as we could in her room. She said she doesn’t like talking about this stuff because she really wanted to concentrate on hope. She felt whenever anyone talked to her about something that was negative or the fact that chemotherapy wouldn’t work, it took her mentally a very long time to refocus on hope. We spent a lot of time with her. just sitting with her, talking or silent. We certainly gave medicines, but we gave her as much emotional and spiritual support as we possibly could.
We reached out to her husband, her mother. Families are different - her husband and mother really felt like they wanted us to focus all of our attention on her and so of course that’s what we did. I think it was as good a death as anyone can ask for. I mean she was comfortable. She was peaceful. She was not in pain. She was very calm. It looked like she was sleeping all of the time. The family was there - the only thing they could have asked for differently was that she be at home. But she was very clear that that was not an option. She wanted to stay and get as much treatment as possible. There are many people who want to die at home; that was not her wish.
I think everyone felt like we really respected her wishes. One of the things we try to teach clinicians is that her wishes may not be my wishes for me or my family. It's really important that we understand the distinction between those two and respect her wishes. To a certain extent what she was asking for was a standard treatment. It’s not like it was experimental. It was within the lines of normal treatment.
I think palliative care has moved forward tremendously over the past decade. The most recent data is over 50% of all hospitals have palliative care programs and 75% of all larger hospitals have a palliative care program. Is there palliative care out there? Absolutely. Is it everywhere? Unfortunately not. I think we need to continue to educate patients and families and clinicians, particularly clinicians, about what palliative care is, what it has to offer, and how it’s beneficial for patients and families and physicians.
This story is a great example. Her oncologist, it’s not like he didn’t want to hear this story, but he had 40 patients in the hospital that he had to see. I spent two hours with her the first time I met her. I had the luxury of time that not everyone has. I have the luxury of having all these specialists: social workers, chaplain, massage therapists. I have this amazing team that I work with. Not everyone has that.
Although palliative care has come a long way it still has a really long way to go. One of the reasons folks don’t get palliative care is that people think it’s only end of life care, it’s hospice care. That misunderstanding makes it so we’re called in very very late in a patient’s illness. I think in most of the cases where we are called in, we do tremendous benefit for all of our patients. But in many cases if we had been called in earlier, I don’t mean a day or two earlier, but months earlier, I think we could have had an even bigger impact on the patients and their families. That’s why we spend so much time trying to explain that palliative care is for all patients across the spectrum of diseases regardless of prognosis and given at the same time as other life-sustaining treatments.
Nobody wants to die. But what people are really afraid of is they're going to have uncontrollable suffering. There's not going to be anyone there to help them. They are going to be abandoned. They’re going to not have their wishes respected at the end of life. I think palliative care takes all that away. We treat pain. We treat other symptoms. We treat patients across the spectrum of disease. We get to know them.
Wouldn't it be great if instead of spending all this time and energy and media attention on the controversy around physician-assisted suicide, we spent our efforts on trying to ensure high-quality palliative care across the country?
I think it would be amazing if we could say that no matter where you are, whether you are at home, whether you’re in a hospital, or whether you’re at a long-term care facility, we will give you amazing care. We will make sure your wishes are respected. We will make sure you’re comfortable. We will do everything we can to maximize your quality of life for as long as we possibly can. I can say that to patients now at Mt. Sinai, but I can’t guarantee it always across all settings.
Dr. Nathan Goldstein practices at the Hertzberg Palliative Care Institute, Mount Sinai School of Medicine, NY
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