How shadowing a palliative care team got me thinking more about life than death
When Jean Kutner invited me to shadow her palliative care team over at University Hospital, I immediately jumped at the idea. It sounded like a great opportunity to learn and it scared me – two great reasons to say yes. I also knew that I would have to make peace with my own discomfort with death and dying before I could possibly build a company around the topic. The stories shared below have been slightly altered to protect patient privacy.
During the 10.10.10 program I did have the conversation with my own parents. I asked them why we hadn’t already talked about it and their response was – “well, we tried but you and your brother shot it down.” True story. My brother and I weren’t ready for it at the time. My father still took us, kicking and screaming, through the financial aspects of the conversation. I did my best to stay engaged. My brother looked out the window, refusing to even look at the documentation. “Just give it all to Sean and the kids,” he said. This is not uncommon. None of us want to have this conversation because it acknowledges that death is real and it’s closing in.
I gave it another shot with my parents during 10.10.10. This time it was different because I initiated it. I had the perfect excuse, I was working on a Wicked Problem. The fact that I was working on this problem introduced an intellectual layer of abstraction that made it feel a little safer. Plus it was Mother’s Day, Happy Mother’s Day Mom! This time I did find out a lot more about their actual end of life wishes. I found out that both mom and dad have had the conversation with each other. I also found out that they are seriously considering physician assisted suicide if and when their facilities diminish to the point that they are no longer themselves. That was a shocker. The one thing that was clear is that they want to own the experience so that it is directed by them, not happening to them.
Those conversations were tough but still felt largely rhetorical. These were all theoreticals, something that would happen in some future when I was a different person living in a different situation. They were highly important conversations but they were not urgent.
The minute I walked into the palliative care ward/area, the attitude shifted. It wasn’t exactly somber, it was more a sense of remarkable self-awareness. All of these folks have come face to face with death, again and again, and they had made their peace with it. The palliative care team didn’t have a formal designation of place. They were assigned to the twelfth floor and given a break room. Their job was to travel the many floors of the hospital to meet the patients where they were getting treatment for their myriad of illnesses.
The team was almost treated as an afterthought by the hospital. This is also common. Palliative care has to fight to prove their worth to the medical community even though studies have shown that they can save a hospital on average $1500 per patient per day. Let’s pull up that definition of palliative care again from getpalliativecare.org: “specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.” I like this definition better than the one in Wikipedia because the Wikipedia one focuses on terminal illnesses and the team made it clear that they worked on more than just terminal illness patients. Diseases that are life-limiting seems to be the preferred definition of folks working in the field.
I met the team: a group of physicians, social workers, nurses and chaplains. I was then invited to their morning meeting where they reviewed their patient list for the day and each patient was discussed until all relevant information was exchanged and thoughts and counsel given on the various plans per patient. Having worked in healthcare, having a doc for a wife and plenty of MD friends, I knew this approach was par for the course. What struck me as very different was the emotional intelligence at the heart of these conversations. Yes, they stayed clinical, but they also discussed how family members would do, the best way to approach the conversation, who else they could bring in to make the conversations easier. They were working as much on state of mind as they were on state of body.
I then traveled with one of the physicians as she made her rounds on patients. When peeking in on the patient, it again felt very similar to any other doc visit. How are you feeling today? How’s the pain? Anything changed since we last spoke? The palliative care seemed to happen more outside of the room, with the sons and daughters of the patients. These were much tougher conversations that once again required an extremely high level of emotional intelligence. How’s Mom doing? I was talking to my sister about Mom’s wishes and we haven’t figured out what we’re going to do yet. She’s coming in from Houston tomorrow and we’ll hopefully figure out the rest of this stuff. I saw a grizzled electrician reduced to tears as he talked about his mom’s condition.
After lunch we had two scheduled conversations. These were the big ones – we’re pretty much out of options and this is how much time might be left. These were the conversations that were best done with a chaplain in the room. I’m not a religious person. Before this experience, I would have felt a little resentful of having a chaplain involved if it were me or a family member in that bed. I don’t feel that way anymore. Denomination seemed totally irrelevant, chaplains are amazing listeners and have long played the role of gatekeeper to the other side. The chaplains working in the hospital offered a level of calm and comfort that surrounded the room like a giant, warm blanket.
The first conversation was a German gentleman who was dealing with a cancer that impeded his ability to speak. This, coupled with his lack of fluency in English led to a conversation that the professionals later called a ‘shitshow’. I, from an outsider perspective, thought it went really well considering all the barriers to communication. There was a new translator in the room and he seemed a little selective in what he decided to translate. This got to the point where I thought one of the social workers was going to physically open his mouth and force Italian words out of it. It’s amazing to watch someone upbraided so effectively in such a polite and caring manner.
The medical professionals in the room were very clear on his options – get another procedure that may not help or start making him comfortable. They were also very concerned that the patient understood and asked him to reply himself on several occasions. There was crying from family members and caregivers but everyone left the room very clear on what the options were. They also asked the patient a lot about his life, spending at least the same amount of time reflecting on his fascinating history as they did on his current situation.
The second conversation was even harder. This was an older gentleman who immigrated during WWII after suffering serious persecution. He led an amazing life of travel, science, business and family that could have been pulled from a wonderful David McCollough biopic. He was surrounded by his kids who all came from out of town and his wife who had moved into an apartment through treatment. His wife was barely keeping it together. She was elegantly dressed, even in the hospital, as if she could walk out of the room directly into a scene from Casablanca. When he was awake, which was not often, he was still very articulate and regaled us with stories so vivid you could easily see yourself there. He was told that he had days to maybe weeks left. His response was resigned and disappointed, “I thought I had more time.”
The more difficult conversation was with the kids outside of the room. These were men and women in their fifties or sixties that couldn’t get their heads around the idea that they weren’t going to have this amazing father in their lives anymore. The oldest daughter, the caregiver, had seen the decline. She was the most ok of the bunch, having had the slow passage of time to work her way through these emotions. The younger two siblings were almost pleading for another option, emotion overtaking reason. The youngest son had a deep, private conversation with the chaplain. He still looked stunned when they finished talking but there was a sense of resigned acceptance written on his face.
In the recaps with the teams after these conversations, I shared how impressed I was with their handling of such difficult messaging. They were very critical of their own performance. They gave blunt and honest feedback of what they could have done better. It’s clear to me that palliative care professionals don’t fall into the field. This is a calling for them.
When I expressed a sentiment that I think a lot of us share, “I don’t see how you can do this every day,” to a person they said they wouldn’t have it any other way. They told me there are good conversations as well as bad where families are laughing and crying as they share these last moments together in complete openness. These professionals are dealing with real issues every day laden to the brim with purpose. That’s living. Because we never know when it’s going to be our turn to say, “I thought I had more time.”