A Personal Connection to My Work in Palliative Care
The Partners Population Health Perspectives blog aims to share the opinions and ideas of our leadership team on health care topics related to population health management. In this post, Maryann Vienneau, Program Director for Care Management at Partners Population Health, shares her thoughts on our palliative care work–from both a professional and personal perspective.
When I took over the palliative care work at Partners Population Health a few years ago, I was totally unfamiliar with this world. I had these pre-conceived notions of what palliative care meant and it all seemed very morbid. But what I’ve realized is, that’s not really the case. At Partners HealthCare, we want to transition the perception of palliative care as a scary, taboo topic to a more approachable philosophy about understanding patients’ wishes and goals. This new philosophy empowers patients to have control over the full trajectory of their life and their health care. How do they want the end of their life to look?
I had to personally face this situation this past fall. My dad had a form of chronic leukemia that took a turn for the worse. After an adverse reaction to chemotherapy he went into kidney failure, and I knew that his condition was really serious. When my brothers and sisters accompanied my dad to the emergency room, the talk amongst the group turned to things like, “Oh, when dad gets out and he’s all better maybe we should move him to a different house…” No one on the care team had broached the subject with our family that he wasn’t going to get any better. Even the oncologist danced around dad’s prognosis with my parents, rather than having an honest and direct conversation with them about the situation and saying, “What do you want? What’s important to you now?” In that moment, I wished my dad’s care team had the same training and resources my team helps support here at Partners.
The Partners system has embraced end-of-life work and sees that it’s an important part of the patient journey. We’ve had to approach it with considerable thought and sensitivity, since this is a very vulnerable population of chronically ill patients with conditions like cancer, dementia, or congestive heart failure. It’s an important time in a patient’s life and there’s a lot to contend with: emotions, religious beliefs, and family issues and dynamics. The hope has been to model best practices and encourage some hard shifts in behavior in our clinical staff when addressing these issues. Palliative care isn’t a bad thing or dirty word, it’s just part of a patient’s health care journey.
At Partners we’ve taken a four-pronged approach (learn more about them here):
- Training: Coaching clinicians on Goals of Care Conversations with seriously ill patients and their families by giving them tools, resources, and actors to practice emotional, face-to-face conversations with.
- Technology: Leveraging data in our electronic health record (EHR) to better identify patients who need goals of care conversations and document their wishes in an easily accessible format within the EHR once a clinician has had a goals of care conversation.
- Home Care: Supporting Home-Based Palliative Care for the seriously ill in the 1-2 years before patients are appropriate for hospice, but may be too sick to make it into a traditional primary care setting.
- Community: Strengthening our relationships with Massachusetts hospices by developing a hospice collaborative.
Not only are these programs helping patients’ quality of life, we also know (when I put my business hat on) that patients’ expenses escalate dramatically in the last six months of life. Our goal is to better understand the type of utilization patients usually have in those six months and apply interventions and supports to reduce unnecessary utilization. For example, by mitigating trips to the emergency department or admissions to the hospital at the end of life, we can keep patients at home with their families for a more comfortable and positive experience. It turns out to be both a qualitatively and quantitatively good thing for the health care system.
I’ve sat through the training that our doctors go through and I’ve practiced on the actors, so I felt like I had some tools to be able to talk with my parents and my brothers and sisters about my father’s condition.
I remember my dad saying, “I’m not getting any better and I know it. I can feel it. But no one seems to want to ask me that.” And I said well, “I’m asking you now dad, what is it that you want?” He told me he just wanted to go home. “I want to go home so my grandchildren don’t have to come into the hospital and sit around and remember me laying in a bed. I want to be in my barka-lounger that you guys all remember me in, sitting in my living room, having a home-cooked meal.” And I was like, “Well dad, if that’s what you want then go ahead and tell them that that’s what you want.”
If I hadn’t gone through all the training and education that I did and seeing what we do with our providers, I’m not sure that I could have accepted it. It wasn’t easy, it was sad. But I felt good that my dad got to have power over how he wanted to spend the end of his life.
After that, we transitioned to the hospice team and it was a great experience. They would come in and talk to him and my family to explain what was going to happen and helped us out as things came up, both medical and non-medical. During hospice, one of my sons played in a high school championship football game. My dad was obviously too sick to go, but the hospice nurse helped to set up a stream of the game in the living room, so he could watch his grandson play. He watched that whole game as proud as could be. In that moment it wasn’t about vital signs or medications. We don’t always have to be the hero saving the life. Sometimes saving the life is letting the person smile and laugh and letting the people who love them be around them.
My dad saw all his children and grandchildren who were home for Thanksgiving and he was right there with my mom before he passed peacefully. It was exactly what he wanted. And although I miss my dad very much, just going through the experience of the work that I do validated that it means something to our patients and their families.
I could read every article there is about end of life. I can cite the studies. I could show you pilots we did on return on investment [ROI] and that goals of care conversations save money. I could talk the talk. But going through it made me understood why it’s so important. It was sad, but it wasn’t scary. And I think that if we can make this just part of our health care journey and not make death scary, I think we win on both ends. We win on cost and utilization, but more importantly we win on quality of care and patient satisfaction. And at the end of the day isn’t that what it’s really all about?
Maryann Vienneau is the Program Director for Partners Population Health High-Risk Care Management including programs for adult, pediatric, ESRD, Ultra-High Risk, and Palliative Care. Vienneau has over 28 years of experience working in the health care industry including hospitals, health plans and physician organizations with a background in operations and analytics. She has been with Partners Population health for 6 years. Prior to this role she worked in operations for Partners Community Physicians Organization (formerly known as Partners Community Healthcare, Inc.).