Collaborating, Informing and Empowering
Leading with a health-equity lens, Compassion & Choices aims to empower everyone to make informed decisions about end-of-life care. All communities should have the information and resources to chart their end-of-life journey.
Motivated by the impact of racism, inequity and disparities in end-of-life care, we are connecting with people nationwide to spread the word about the importance of end-of-life care planning and accessing quality end-of-life care.
Through respectful engagement, we encourage priority populations to take charge and identify the values that will inform what kind of care they do or do not want while aligning options with personal priorities and beliefs.
We’re informing and empowering the Black community about the power of end-of-life care and planning. From online tools and resources to in-person events, learn more about what we’re doing to encourage conversations around end-of-life care. Planning equals peace.
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Most people who identify themselves as adhering to a faith or religious group support expanded end-of-life options. We’re creating a network of supportive faith leaders to work in their communities to normalize conversations around end-of-life planning and options.
Through regional events, national conferences and informative webinars, learn about our efforts to inspire the Latino/Hispanic community to take charge of their end-of-life planning and care. Find out how you can get involved.
The end-of-life options and disability rights movements share important core values: autonomy, independence and self-determination. We’re working to correct misconceptions about support within the disability community.
The LGBTQ+ equal rights and end-of-life options movement are historically closely intertwined. Learn how we're supporting progress in end-of-life care equity.
In-person and virtually across the country, we give presentations about advance planning, care, options and Compassion & Choices' many resources and tools to help you chart your end-of-life journey. Visit our events page to attend a Community Engagement event.
Aug 24, 2022 Doctors for Dignity Doctors4Dignity Mikaela Swann
Over the summer, Howard University medical student Mikaela Swann has been collaborating with the Doctors for Dignity program at Compassion & Choices as the second summer intern in the program’s history. Mikaela spent her summer researching end-of-life disparities and conducting community conversations about end-of-life planning with several different groups, working alongside Doctors for Dignity Director Dr. Rebecca Thoman, and Donna Smith, Compassion & Choices Diversity & Inclusion Coordinator. To round out her internship, Mikaela sat down to answer some questions about her time in the program and enumerate some of the insights that she’s taking away from this experience.
Question: In broad strokes, what are some of the great things that you accomplished this summer? Where were you able to place your impact, and what were some of the highlights?
This summer, I had the lovely, amazing, wonderful, incredible, - I don’t know how many adjectives I can possibly use - opportunity to learn from Dr. Rebecca Thoman and Donna Smith. They helped walk me through everything there is to know about advance care planning including the different options that are available, how to assess those options, and how to access and exercise patient rights at the end of life.
Over the course of my internship, I prepared a presentation about end-of-life planning for three different groups: the Pre-professional and Professional Students at Howard University, members of the Delta Sigma Theta Sorority, Incorporated, and Tree of Life. In each of these presentations, I discussed the importance of advance care planning, the history of disparities that some communities face at the end of life, as well as how to move forward to achieve more equity in end-of-life care. In sum, I helped deliver tangible tools for people to create their own advanced care plans as well as spread this useful information to other people in their circles. I’m grateful for the opportunity to learn more about such a unique and important healthcare issue, and I’m even more grateful for the chance to share this knowledge and resources with others.
One of the most rewarding parts of this internship experience was the opportunity to present to audiences of different ages. I think my youngest participant was around 12 years old, and the oldest was 83. Seeing this diversity of age was really important to me because one thing that I really tried to stress in my presentations is that end-of-life planning is an intergenerational conversation that needs to happen within communities of color. By starting these family conversations earlier, I think we’ll be able to be more prepared. And that’s one way we can chip away at some of the existing disparities in end-of-life care.
Q: Were there any unexpected or surprising responses to your presentations?
One of the main pieces of feedback that I received from my presentations were comments like “Wow, I wish I would have had this information sooner! Thank you so much for this information and these resources!” End of life planning can be an uncomfortable topic for some people, but I think people were really grateful to have a gentle entry point into that discussion.
It also took some people by surprise that a sunny and chipper 23-year-old was bringing them this information about end-of-life planning that can sometimes seem like a dower topic. I feel like I fill the niche of being able to provide full and complete information about end-of-life care, but without making it sad. One important lesson I learned is that when you approach conversations about end-of-life planning, it’s important to emphasize that it’s not just about preparing for death, it’s about preparing for tomorrow. My experience this summer allowed me to practice delivering messages about end-of-life planning in a positive light, and that’s something I plan to take with me moving forward.
Q: How has this internship changed your perspective on what type of medicine you would like to practice, or how you want to practice medicine in the future?
This internship did an excellent job of allowing me to practice having difficult conversations with new people. That’s really important as a physician, especially when you’re bringing bad or uncomfortable news to a patient. In this internship, I had to learn how to facilitate large, difficult conversations with groups of 40+ strangers on Zoom.
I spent the first 10 minutes of all of my presentations just prefacing the topic of advance care planning, and really framing it correctly so that the conversation was more approachable and digestible. This was crucial to help break down some of the stigma and hesitations that normally surround discussions about hospice and palliative care. I think I’ll be able to take that practice of being able to facilitate difficult conversations into my future career in medicine.
Q: From your perspective, what are the most prominent challenges that the end-of-life choices movement will face moving forward, and what do you think the key will be to overcoming those obstacles?
My answer to this is twofold: people aren’t introduced to the idea of end-of-life care early enough, and the available information isn’t always approachable enough.
Introducing different groups to the idea of advance care planning before they encounter an emergency is crucial. It’s important to get this information to people at a time when they are with their communities and not under duress so that they can take the time to fully explore their options and make a solid plan with their loved ones. So really getting out there early and engaging with these communities, meeting people where they are, is super important to help people prepare for end-of-life care.
Additionally, in my research this summer I found that the health literacy level required to understand some of the end-of-life planning forms is at a high school or college level, but the national average for health literacy is at a 5th or 6th grade level. That presents a massive challenge to end-of-life planning.
One way that Compassion & Choices is already working on this is by breaking down some of the more complicated terms in the End-of-Life Decisions Guide. By providing this information in layman's terms, more people will be able to access this information and make informed decisions before emergencies come up.
Q: What is one piece of advice you would give to future Doctors for Dignity interns about how to get the most out of this experience?
Easy! I would tell future interns to really use your mentor. To gain the most out of this internship, you have to have conversations and ask questions. My mentors were able to provide me with great advice at so many different levels; Dr. Sonja Richmond provided great career advice, and demonstrated to me what it looks like to be a black woman in medicine, having difficult conversations and interacting with elderly populations. Dr. Thoman showed me how to access the right information in order to succeed with my messaging. And Donna Smith showed me how to effectively present information to different groups of people. So my advice to any newcomer is not to be afraid to ask questions when you don’t understand things, and to really learn as much from these experts as you can while you’re here.
Overall, I’m very grateful to Doctors for Dignity and Compassion & Choices for creating spaces to have end-of-life conversations, and for taking me on as a summer intern. I didn’t have a lot of background knowledge about end-of-life care coming into this, but leaving this experience I feel like I know so much more about end-of-life care issues! This internship has certainly changed my understanding of end-of-life options and informed the way that I’ll experience the field of medicine as a student, future practitioner and community member.
Compassion & Choices is incredibly grateful for all of the hard work and time that Mikaela dedicated to our program this summer. She has been an absolute delight to have on our team, and her unique mix of charisma, knowledge, and passion made her an invaluable asset to our program. We wish her all the best as she continues with her medical education, and we look forward to working alongside her in the future to change end-of-life care in the U.S.
