Last fall, NCG kicked off an exploration of the end-of-life care field. We wanted to see how we in philanthropy might be able to dig deeper on this issue that will inevitably impact every single one of us. Our goal is to uncover where there could be opportunities for engagement, learning, and potentially collaboration.
We are excited to kick up our involvement a couple notches next month in April during Reimagine End of Life Week. There are a plethora of events exploring life and death, and NCG is sponsoring three dynamic sessions to open up this discussion among our membership and see who might be interested in continuing the conversation. They include:
We are also very pleased to be inaugurating a blog series on transforming end-of-life care. During this series, we will be hearing from experts in various end-of-life issues. Our first blog interview is with the nationally-renowned physician and end-of-life expert Shoshana Ungerleider. On the heels of the wildly successful End Well symposium held this past December, Shoshana recently sat down to tell the story of how she got into this area of work and what she hopes to achieve in the field.
We invite you to hear her journey and join us at one of the upcoming events, or all three!
What’s your personal and professional connection to end of life care?
I’m a physician. I didn’t set out to be an advocate for end-of-life care. I wanted to be a cardiologist. But I had several experiences that led me here. In my first year of training, rotating in the ICU. I found myself taking care of frail, elderly patients with multiple chronic problems on top of things like advanced heart failure or end stage cancer. They were admitted to the ICU even though it wouldn’t change their situation. These patients were hidden away, suffering. They were not in a comfortable place.
That’s the default thing we do in this country - you will receive aggressive, invasive care by default. Don’t get me wrong, we save lives everyday thanks to modern medicine and fantastic things are done in the ICU. But we know 70-80% of people want to die at home, and only 20% do. I feel like we are failing our patients. We aren’t having the necessary conversations we need to have. We must open the door to allow patients to have a say in the care they receive.
I trained at Sutter, which has a fantastic palliative care program. I saw by example what a great impact a palliative care practitioner can have with a patient, family, and their loved ones. They have the conversation about what people want. I saw this have an amazing impact on the trajectory of people’s lives. Having a skilled conversation can open the door to new options that are in line with people’s goals and values. I thought, wouldn’t it be wonderful if the whole healthcare system could be like this? The rest of my career I sought out opportunities to do this.
What’s surprised you the most about the field of end of life care?
The number of people in the public who don’t know what palliative care is. It’s estimated that three-quarters of Americans aren’t familiar with palliative care. There needs to be a lot of work done to increase basic understanding. Palliative care is actually widely available. But if you want it and you want it early, you need to ask for it.
What do people fundamentally not get?
They think it’s the same thing as hospice. It’s actually interdisciplinary and focuses on quality of life at any stage of illness, not just end of life. It’s an extra layer of support for people and their loved ones facing a serious illness. Who doesn’t want that? It’s a no brainer.
As you do this work more and more, what have you learned about how to do it well?
Meet people where they are in terms of understanding of illness. There’s a wide variety there. Some people jump in and read a lot. Others are really in the dark.
Another important lesson I’ve learned is that these conversations take a lot of practice. Even if you have been doing it for a long time, they are still hard to do. It takes constant refinement. It’s a skill that all providers need to practice just like removing a gall bladder in the operating room.
One thing we could do better in the medical field is debrief difficult conversations with our colleagues. This goes against the medical culture. When someone dies in a traumatic code situation, doctors don’t usually discuss these issues with the rest of the team. They just move on. I believe this lack of acknowledging suffering and pain is one thing that’s leading to extreme levels of depression and substance use in the field. We are all human beings and these are not easy things to do.
What aspiration led you to create the symposium, End Well?
I found myself attending conferences and convenings of all sorts on hospice, palliative care, and policy throughout the country. I’d meet incredible people who have been doing this work for 30 years. I found myself running into the same wonderful people, all very active already in the field. I think we are at a tipping point. In order to have true culture change around end of life, the conversation needs to be moved out of silos, we need to invite new voices to participate. Ending well is a human issue.
The symposium I founded, End Well, is the first of its kind. We brought together people of all kinds. We used human centered design thinking to address these issues. We gathered thought leaders from tech, policy, arts, media, education, patient advocacy and healthcare – all with the goal of transforming the end-of-life to create a more human centered experience. A basic premise was, if we could start over, how could we do it differently and better.
If you could give advice to philanthropy in this area, what are one or two things you would have them do?
I would encourage people to think about reducing barriers to entry around this conversation, to focus on how we can educate people about the benefits of palliative care. Philanthropy can be a powerful tool for public engagement if done the right way. I’d encourage funders to think about how to create a program than can reach the highest number of people and truly affect change.
In my personal time, I run my own foundation. I fund documentary films and medical education reform as well as the End Well Symposium. I am also part of the national End of Life Funders Network.
What’s your end-goal?
I’d like to get rid of palliative care as a field, so that it’s just the way things are done.
What we really need to do is base our entire healthcare system around peoples’ goals and values for living their lives. The system needs to be more about what matters most to the people we serve.