Meet Ernestina Mireku, the Fall 2022 Doctors for Dignity End-of-Life Disparities Intern

 

Ernestina Mireku - Doctors For Dignity Intern - Fall 2022

Compassion & Choices is honored to welcome Ernestina Mireku as the new End-of-Life Disparities Intern with our Doctors for Dignity program. Ernestina is currently a fourth year medical student at the University of Illinois College of Medicine. She will be joining Compassion & Choices this fall to research end-of-life disparities in end of life care and support our outreach efforts with our physician advocates. To introduce Ernestina to our organization, Compassion & Choices staff connected with her in an interview to learn more about her interests and what led her to medicine.

Question: Tell us a little bit about your background, where you grew up, and what led you to your current career path as a medical student? 

I was born and raised in Chicago, and I grew up around the Lakeview and Wrigley Field stadium area. I went to the University of Illinois Urbana-Champaign for my undergraduate degree, and then I did my post-baccalaureate program at Southern Illinois University. And now I’m a fourth year medical student at the University of Illinois, Chicago. I’m in my final year of medical school now, and I’m doing my sub-internship at the Veterans hospital and I plan on applying to anesthesiology for my residency. 

I think my initial interest in medicine started in high school when my dad was diagnosed with diabetes. We’re Ghanian, and in the Ghanian community where we’re from, things like diabetes and hypertension are very prevalent. So when my dad was diagnosed with diabetes, it sparked my interest in medicine because I wanted to learn more about his disease, help him with his medication management, and even explain his illness to him because English is his second language. And then I solidified my interest in medicine while working as a Patient Care Technician in the ER and the Medical Surgical department, and that’s where I gained my confidence and decided that I wanted to dedicate my life to serving underserved populations through medicine. 

Q: What brought you to Compassion & Choices? How did you find this internship? 

Funny story! I went to a Student National Medical Association (SNMA) conference in April, and on the plane ride back to Chicago I met Sydney Reed, who was a previous Doctors for Dignity student intern. We sat next to each other on the plane, and she told me all about her experience with Compassion & Choices and the work that she did as an intern. She said it was an excellent opportunity to learn more about end-of-life care, and I thought it sounded interesting. We don’t really learn a lot about end-of-life options in our medical school curriculum, and I wanted to explore this field. So I applied for the internship, and here I am! 

Q: Who are some of your role models in life? 

My mom is my role model. Now that I’m a little older, I’m beginning to fully realize the amount of support that she’s given me. Even though she doesn’t always understand what’s going on, she always does her best. She’s never given up on me, and she’s incredibly loyal. I want to be like her when I get older.

Q: What are you most excited about in this internship?

I’m really looking forward to familiarizing myself with end-of-life options. As I said before, we only get a few lectures about end-of-life care in medical school. But now that I’m working in a hospital setting with patients, I’m realizing that it’s really important to understand and discuss end-of-life care options. I also want to get out of my comfort zone and practice presenting and public speaking in front of different organizations. I’m involved with a few local organizations, including student and church groups, and I’m excited to connect with them to talk about end-of-life issues. 

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Ernestina will be working with Dr. Rebecca Thoman, Compassion & Choices Doctors for Dignity (D4D) Director. D4D is a network of more than 2,000 physicians from across the country who support a full range of end-of-life options, including medical aid in dying, and are addressing end-of-life disparities through education, advocacy and empowerment. To learn more about Doctors for Dignity and get involved with their advocacy efforts, please visit their webpage and get in touch!

Meet Mikaela Swann, the 2022 Doctors for Dignity End-of-Life Disparities Intern

Compassion & Choices is excited to welcome Mikaela Swann as the new End-of-Life Disparities Intern with our Doctors for Dignity program. Mikaela recently completed her first year of medical school at Howard University in Washington, D.C. She will be joining us for the summer to explore end-of-life disparities in the healthcare system and support our outreach efforts with our physician advocates. To introduce Mikaela to our organization, Compassion & Choices staff connected with her in an interview to learn more about her interests and what drew her to this internship. 

Both Mikaela’s professional resume and personal life experiences demonstrate a long history of helping others, which informs her passion for medicine and her future aspirations to practice gerontology. Growing up in Yorktown, Virginia, she spent a lot of time working with her family and providing care to her grandma and great grandma. In her own words, she “had the pleasure of caring for my grandparents. I grew up with a love and appreciation for them, and for being able to care for them.” She recounts a specific instance when her great-grandma’s nurse aid was unavailable, so it was up to Mikaela to help her great-grandma get to bed. She described the process of caring for her as “such an act of respect, to be able to give [my great-grandma] this act of kindness and service.”  

Mikaela’s experience providing care for her family influenced her desire to help others in the professional realm. As she put it, “I always knew I wanted to help people, but you can help people by doing a lot of different things.” In high school, she took a strong liking to her science classes, and she specifically credits her AP Biology teacher for helping spark her interest in anatomy and health studies. And that’s when it clicked for her. “I realized that [medicine] is where I am best equipped to serve. You can be great at many things, but where you provide the most impact, I feel like that’s where you should be. And I feel like science and medicine is that space for me.”

Mikaela went on to earn her undergraduate degree from the prestigious Howard University with a major in Biology and minor in Psychology. After graduating in 2020, she spent a year working in the Virginia Governor’s office as a special assistant to Dr. Janice Underwood, the Chief Officer of Diversity Equity and Inclusion for the state. In this role, Mikaela saw firsthand some of the existing healthcare disparities in her home state, and she described the emphasis that was placed on understanding the needs of different communities before proposing solutions to their problems. “I say that if you don’t know [the people in underserved communities], then you don’t know how to help them.” Mikaela came away from this experience with an increased determination to fight for underserved communities and ensure that they receive the resources that they ask for, not simply those prescribed to them by others. She returned to Howard University for Medical School in fall of 2021.

Mikaela’s decision to work in the end-of-life advocacy space is partially influenced by her experiences with her family's end-of-life planning. When one of her grandmothers was diagnosed with terminal lung cancer, Mikaela was privy to her family’s discussions about end-of-life care, and she listened to her grandma weigh out all of her options with her family and her healthcare providers. “I feel like giving her all of her options gave her closure and a sense of pride and respect. And I feel like it brought peace to our family in the end.” Observing the positive power of patient directed care at the end of life inspired Mikaela to want to ensure that all families have full knowledge of end-of-life choices so that they can direct their own end-of-life journeys. 

Looking ahead to her internship experience, Mikaela expressed that she’s excited to learn about all aspects of end-of-life care for both personal and professional reasons. “This internship not only aligns with my professional career goals, but also my moral goals as a person. I feel like this internship will do a great job of allowing me to explore the disparities out there. I want to put myself in the best position as a medical professional to care for [older populations] and I think learning about these disparities that are going to affect the population that I one day want to treat is a good first step. So I’m very excited for this opportunity to explore these disparities in this program this summer.” 

Mikaela will be working with Dr. Rebecca Thoman, Compassion & Choices Doctors for Dignity (D4D) Director. D4D is a network of more than 2,000 physicians from across the country who support a full range of end-of-life options, including medical aid in dying, and are addressing end-of-life disparities through education, advocacy and empowerment. As an intern with this program, Mikaela will gain a deeper understanding of hospice and palliative care, advance care planning and the factors that contribute to end-of-life disparities. She will then have the opportunity to share that information with her peers and her community, offering more families the chance to share openly and honestly during a crucial time.

Meet Bryan Redmond, End-of-Life Disparities Intern with Doctors for Dignity

Bryan Redmond - Doctors For Dignity Intern - Fall 2022

Compassion & Choices is honored to welcome Bryan Redmond as the new End-of-Life Disparities Intern with our Doctors for Dignity program. Bryan is currently an MD PhD candidate at the University of Rochester School of Medicine and Dentistry in Rochester, New York. He will be joining Compassion & Choices this fall to research disparities in end of life care and support our outreach efforts with our physician advocates. To introduce Bryan to our organization, Compassion & Choices staff connected with him in an interview to learn more about his interests and what led him to medicine.

Question: Tell us a little bit about your background, where you grew up, and what led you to your current career path as a medical student? 

I was born and raised in Memphis, Tennessee, attended undergraduate at Xavier University of Louisiana in New Orleans, Louisiana, and am now a medical student at the University of Rochester School of Medicine and Dentistry in New York. I’m in the Medical Scientist Training Program (MSTP), also known as an MD PhD program, and I’m completing a PhD in Neurobiology and Anatomy. 

I was initially drawn to medicine because it combines two of my passions: helping others and science. I specifically wanted to take the scientific approach to improving the treatment options available for patients. Simultaneously, I want to be on the front lines, advocating for patient well-being and pushing for these treatments to be actualized in clinical settings. My research is in visual rehabilitation, focused intensively on helping occipital lobe stroke patients recover their vision. Current rehabilitation options for this patient population are slim to nonexistent, which really highlights an existing disparity in patient care. I’m excited to continue my research in this field and to expand the options that are currently available to patients, and to blend a data driven approach with genuine human connection so that we can improve patient care from the clinical level to the policy level.

Question: How did you hear about Compassion & Choices, and why are you interested in working with our Doctors for Dignity program?

I learned about this internship through a conversation with Dr. Rebecca Thoman at the Student National Medical Association (SNMA) Annual Medical Education Conference (AMEC) last year. We chatted a lot about dementia care, and Dr. Thoman explained some of the legislation that Doctors for Dignity and Compassion & Choices are currently advocating for, like medical aid for dying, and resources for folks suffering from dementia. I was already interested in end of life care, so this sounded like a really good fit. 

I also find dementia care to be a particularly interesting and important area of healthcare policy, especially when I reflect on my own granddad’s struggle with dementia and my family’s experience with his diagnosis and subsequent passing. I can see how families like ours, and other underrepresented communities, could have benefitted from additional resources and options in the dying process. 

I also want to help close the gap between existing research in best care practices and what policies are actually being implemented in the real world. You can do the best possible work in research, but it’s not helpful until the research findings have been conveyed to the right stakeholders. I think that Doctors for Dignity and Compassion & Choices are leading the push in creating research driven policy changes that really hone in on some of the causes of the current disparities in end-of-life care. And as a future physician scientist with a deep interest in health policy, I’m excited to learn more about this movement and help build up the network of stakeholders who can help us overcome these end-of-life disparities. 

Question: What are you looking forward to in this internship? Do you anticipate any challenges in connecting with stakeholders outside of Compassion & Choices? 

In medical school, we talk about every system in the body and every associated pathology. But we talk very little about death and dying. I think any future clinician could certainly benefit from having more conversations about palliative and hospice care, and about the services and resources that clinicians are supposed to offer. So I’m excited for the chance to learn more about this area which will improve the quality of care that I’ll be able to provide for my future patients. 

I’m also excited to interact with different groups of people to talk about a subject that I find to be interesting, yet challenging. Unlike the vast majority of basic science topics in medicine, it’s difficult to talk about death using purely quantitative data; instead, each death is about honoring the priorities and values of the dying person and their family. I think that this internship will give me the opportunity to explore current research on end-of-life care options so that I can equip myself with the best tools to approach end-of-life discussions with diverse groups of people. I’m a part of a lot of different community groups that could really benefit from having these conversations, and I’m excited to help share with them this information.

Even though I’m excited for these conversations, I know that they’ll be pretty tough. I know that some patients might not be receptive to some of the options that I’ll be discussing. I wouldn’t say that I’m particularly nervous about giving presentations and chatting with different groups, but I do anticipate engaging in tough conversations and receiving push back about why I advocate for palliative care, hospice care, and medical aid in dying. But I’m hoping that I can at least give people who disagree with me some food for thought so that when the time comes for them to make decisions, they might be able to look at end of life care from a different perspective. 

Question: Outside of work and school, what keeps your interest? How do you spend your free time?

I’m a gym addict. I’m a visual science researcher, but visual perceptual training is primarily rehabilitation. And as a rehabilitationist, I love going to the gym. I’m also currently binge watching How to Get Away With Murder; love me some Viola Davis and The Mentalist; Patrick Jane is sensational. And I also play basketball in a league with some doctors, nurses, and medical students. It’s very competitive, it gets heated on the court. But we always have a good time.

Bryan will be working with Dr. Rebecca Thoman, Compassion & Choices Doctors for Dignity (D4D) Director. D4D is a network of more than 2,000 physicians from across the country who support a full range of end-of-life options, including medical aid in dying, and are addressing end-of-life disparities through education, advocacy and empowerment. To learn more about Doctors for Dignity and get involved with their advocacy efforts, please visit their webpage and get in touch!

Catherine Sonquist Forest’s husband benefited from the aid-in-dying law Dr. Forest had championed in their home state of California.

Catherine Sonquist Forest, M.D. M.P.H.

Since my training in the 1980s at the height of the AIDS era in San Francisco, my career has been dedicated to improving public access to healthcare, including the full range of options at the end of life. I became involved in the early stages of passing the California End of Life Option Act, which went into effect in 2016, and I’ve since seen how having this option has altered the lives of so many people for the better.

Last year, my spouse, Will, became one of those people.

In May of 2021, my beloved partner of 37 years was diagnosed with a motor neuron disease, similar to ALS. But unlike ALS, Will’s decline progressed incredibly rapidly, more rapidly than had ever been seen by any of his physicians. Will was a big, athletic man — over six feet tall, he played ultimate and disc golf into his sixties. He was very healthy; until this, no major health problems had affected him. Now we understand that his rapid decline was very likely related to a COVID-19 infection he had in early 2020.

In a matter of months, Will’s condition declined precipitously from initially losing the ability to walk to barely being able to talk. The doctors informed him that he was going to die by choking or suffocating.

Driving home after we had learned Will’s diagnosis was terminal in the spring of 2021, he turned to me and said, “Catherine, if you hadn’t worked on the aid-in-dying law, I would be living every last day of my life absolutely terrified of dying this way. And I don’t have to. I know there’s something that I could do.”

However, our primary health care network was Catholic, so Will’s primary care physician was unable to prescribe the medication for him due to non-participation. Will had to start the process over again at a different hospital, which created a delay of about a month before he could get an appointment or prescription. Those weeks were full of anxiety for Will. He was concerned that by the time he finally got the medication, he would no longer be able to self-ingest it, which caused him great distress.

It made us think about people in other states who do not have authorized access to aid in dying. Would we have considered moving to a jurisdiction with access? How difficult it would be to try and move when you’re already at the end of your life. In Will’s case, there was less than two months between Will’s terminal diagnosis and death. There would have been no moving him. Every anxious day was a lost day, in a way. Thankfully, after several long, tense weeks, Will got access to the medication in time.

Will knew he was dying. Having the option of medical aid in dying meant that instead of having to worry about what would happen — Would he choke or suffocate to death? — Will could decide for himself whether his own suffering was unbearable. He could focus on spending the time he had left with our children and other loved ones, rather than in a state of anxiety over the end. He created a playlist of the music he adored. He made a list of books that had made a difference in his life. He was able to be with friends and family. While he still could, he read the kids’ favorite book aloud, and we recorded him. By the time he got to the last chapter, he was barely able to speak. Soon after, he lost his voice, and we got a recorder that allowed him to amplify his whisper.

“Just knowing that if the suffering were too great, he didn’t have to prolong the inevitable, Will was able to focus the time he did have on quality time with the people he loved.”

Will was a brilliant public health scientist who had been honored for his work in public health by the state of California. He was losing the things he loved — especially the ability to communicate. He was also losing weight, shrinking down to nothing, and unable to stand by himself, or even sit. And yet he still wanted to be with his family and live. So, while he was greatly relieved to have the option of medical aid in dying, he didn’t yet know if he would use it. We were just living day to day. His amplified whisper still allowed him to communicate with us.

He had a ventilator to help him breathe at night, but he couldn’t imagine ending his life fully intubated on the ventilator. He knew he didn’t want a feeding tube. Despite having exceptional palliative medicine and hospice care at Stanford and our local hospice, Will’s suffering was not something they could fully address.

After one excruciating night, which Will spent gagging and choking, he knew it was time. That morning, he quoted Bruce Cockburn: “Anyone can die here, they do it every day. It doesn’t take much effort though it goes against the grain.” Prior to this, he had not been sure he would use the legal option of aid in dying. That morning, however, he knew the tide had turned. He whispered, “Gather the kids, I’m ready.” It was the summer of 2021. We rolled his bed outside and he had a beautiful death surrounded by the trees and those who love him.

His peaceful death only deepened my commitment to supporting terminally ill people in the best death they can have. All people, especially our most vulnerable, deserve access to the care they want, whether that’s curative treatment, palliative care, hospice care, aid in dying, or some combination of these. That’s what Will and I fought for. The irony in all of this is that Will was an example of someone who had access to the very best care, and yet he still faced barriers in receiving the care he wanted. How much more difficult might it be for someone who was not in his position of privilege?

Will’s suffering also provides a great example of the importance of having this option. One of the biggest benefits of medical aid in dying is that it gives people the opportunity to live every second of their lives bonding with their loved ones rather than feeling anxiety, depression and stress. This was true for Will: just knowing that if the suffering were too great, he didn’t have to prolong the inevitable, he was able to focus the time he did have on quality time with the people he loved. It was the right end-of-life care — for him.

Overall, palliative care and hospice care have improved dramatically in the last 20 years. Yet there are some terminally ill people whose suffering still cannot be adequately addressed, and medical aid in dying may be the right treatment for them. Medical aid in dying is purely voluntary — no one is required to participate. And likewise, no one should be left to suffer unnecessarily. For those people, we need to recognize that aid in dying is a crucial option for end-of-life care.