Civitas is excited to announce that we will be creating monthly stories featuring our members’ staff, leadership, and organizations. We recently spoke with Dr. Susan Nelson, MD, who serves as Medical Director of Post-Acute Care for the Ochsner Health Network and is the System Chair, Palliative Medicine and Supportive Care and Bioethics.
Meet Dr. Susan Nelson, MD
Written by
Malik Chambers, Communications Specialist, Civitas Networks for Health
Published on June 28, 2023
Good morning, Dr. Nelson! It’s a pleasure to meet with you on behalf of Civitas Networks for Health and the Louisiana Health Care Quality Forum. Before we begin discussing your current work in the Serious Illness Coalition and palliative care, I would love for you to introduce yourself. What got you involved in health care and where did it all begin?
Dr. Nelson: Fun fact. When I was an undergraduate at Texas A&M, it was the first year that the school allowed girls to live on campus. I initially went as an engineering major because I liked math and science. Unfortunately for me, physics was not my strongest subject. I quickly discovered that in engineering, you could not get extremely far if you did not like physics. Soon after, I switched to biochemistry and got into the University of Houston College of Pharmacy. This was an amazing place to learn, and a pivotal opportunity for me at the time. The role of a pharmacist has significantly changed over time, and I joined the industry at the end of the era of pharmacy where physicians would just write out prescriptions and pharmacists filled them. Pharmacists were just getting into providing medical teams with expertise on dosages, treatment plans, and drug therapy.
I did a clinical rotation at Hermann Hospital, affiliated with the University of Texas. One of the professors in the pharmacy school convinced me to apply to medical school. This appealed to me because it blended well with my pharmacy background. I chose internal medicine, as my specialty as we give patients medicines and develop a plan of care for them. I went through my internal medicine residency and then went to practice in Huntsville, Texas, which is a rural town about an hour north of Houston. Huntsville is where I discovered that I really liked older folks and started my career path in geriatrics. With older adults, you cannot talk about how you will “land the plane,” without experience on how to communicate it. I also joined the field of hospice and palliative care during the infancy of the movement.
Did you attend the University of Houston? That is my alma mater! Tell us a bit more about your background in the city. I am curious!
To be exact, I graduated from the University of Houston College of Pharmacy and then somebody (my professor) dared me to apply to medical school. So, I did and attended the University of Texas Medical School in Houston. I worked as a pharmacist as a much better option for me than waiting tables while going to school!
It is interesting how you switched lanes in the initial stages of your career! How did you get involved with the Louisiana Health Care Quality Forum?
The Louisiana Health Care Quality Forum (LHCQF) has done valuable work to improve serious illness care in Louisiana, and I am happy to have been part of it. Unfortunately, Hurricane Katrina was the impetus for palliative care being so relevant in the state, and we are still living through the trauma of what that disaster caused. it helped me understand how the hurricane affected so many facets of our society and health care.
You mentioned that you gained a passion for elderly people. Including your time in Huntsville, what also influenced you to focus your career on the elderly, palliative care, and end-of-life care? “Landing the plane” is a tough issue topic for many to tackle, let alone build a career out of.
In the world of geriatrics, we really try to focus on what matters most to people. As palliative doctors, there are a lot of things within a patient’s health care that we cannot fix, but we can make their lives better along the way. As more people face life-limiting illnesses that are not necessarily fixable, we want to make sure that we journey with them to make sure that whatever days they have left are spent doing what matters most to them. We want to make sure that we relieve their symptoms as they go through that reality.
I am one of the few geriatricians in Louisiana. I started taking care of patients that were in nursing homes and quickly really realized that we could do better. Working with these patients helped me realize their families needed guidance on what to do, how to take care of their loved ones, and how to support them. We sourced information from other parts of the country through a system called the POLST paradigm (now National POLST Collaborative), which created documents that outlined the care plan for somebody you knew was nearing the end of their life. We were just looking at that as a model of how to aid in conversations that we had based on the patient’s illness.
After Hurricane Katrina, there was a health care redesign collaborative which comprised of forty plus representatives. We worked on reforming the health care system in Louisiana as a model for the rest of the country. One of the things that we worked on was how we make things better for people that are living the last couple of years of their life. Our initiatives included developing a POLST in Louisiana to document patients’ end of life health care plans. I worked with the folks at the Louisiana Health Care Quality Forum and a group of what seemed like a jillion other people to develop this program in the state, which we conveniently called LaPost. Through this work, we were finally able to have legislation passed in our state in 2010.
LCHQF has been the home for this work and many other programs related to quality health care. They have been a convenor of people providing education for consumers, other health care organizations, and particularly long-term care facilities on how to use the document (LaPOST).
Over time, we realized that the LaPOST document was not enough. We were gaining access to valuable information, but we needed to shift our focus on how we better take care of people who have serious illnesses. Serious illnesses can be classified as life-threatening ailments like lung cancer, emphysema, heart failure, kidney failure, and other cancers. Our LaPOST coalition has morphed into the Serious Illness Coalition to really address more than just how do we educate people about the use of the LaPOST program.
Bringing groups of people together from serious illness organizations helped us to display what they are doing in their organizations so that other groups can potentially replicate similar systems in their own communities.
To further influence policy, the Serious Illness Coalition partnered with the Coalition to Transform Advanced Illness Care (C-TAC) based in DC. Now our Serious Illness Coalition meets quarterly, and C-TAC meets monthly. All 50 states are not always represented monthly because everyone in the coalition is busy. But when we meet, we show how organizations are improving serious illness initiatives nationwide.
You mentioned the Serious Illness Coalition. Tell me more about this group.
In 2019, the American Cancer Society had a legislative suggestion for every state to have a palliative care advisory council. They helped get legislation passed to establish a workgroup that’s primary focus was on palliative care with the Department of Health in Louisiana and the state Medicaid program. Next, the state governor selected nominees to join this coalition. Our first meeting was on January 15, 2020, and then, a month later, the Covid-19 pandemic took over. After our first in-person meeting, we continued to meet quarterly by Zoom. A benefit of the ZOOM meeting was our attendance rose significantly compared to our in-person discussions. People were much more open to meeting virtually as opposed to driving to Baton Rouge to attend a ninety-minute quarterly meeting. We wanted representation from the northern part of the state from cities like Shreveport and Monroe, as well as down in the southern Bayou region.
Being forced to meet each other online paid off, and we were able to get some things accomplished! For example, Medicaid in Louisiana was not paying for the advanced care planning codes developed in 2016 by Medicare. As a result of our efforts, we now have all but one health insurance organization in Louisiana that does not pay for those advanced care planning codes. We worked with Medicaid because the hospice benefit for patients with Medicaid was different than what we thought it should be at the time. It did not mirror Medicare, and we were able to get Medicaid to provide funding and changes to their regulation so that it mirrors Medicare now.
And then we worked to provide some education for pediatric palliative care and serious illnesses. This was to address children who have life-limiting illnesses. A lot of the hospice agencies really could not provide the kind of services that those kids and their families needed as they had little experience or opportunities.
For example, there is a palliative care interdisciplinary group out of Children’s Hospital New Orleans called the Pelican Krewe that partnered with Saint Jude in Memphis to provide monthly training for hospice teams on being able to take care of children with life-limiting illnesses. We morphed the Palliative Care Advisory Council and LaPost Coalition now into a Serious Illness Coalition (with specific agendas) that is being hosted by LHCQF.
It sounds like there was a bit of red tape you had to cross when trying to put together policies to address serious illnesses. LHCQF must had the foresight to continue this work.
The Quality Forum also has a partnership with C-TAC. Ochsner Health and the Louisiana Mississippi Hospice and Palliative Care Organization are also members of C-TAC. With their participation, we have been able to make sure that our members know some of the policy changes that are happening or wish to happen in DC in the future.
There is a bill known as the Palliative Care and Hospice Education and Training Act which provides funds for training palliative care professionals across all disciplines. Not to be crass about the reality of palliative care, but none of us gets out of here alive, so this type of care is relevant to everyone. It was fantastic to see this type of educational support at the national level being entertained by CONGRESS.
“None of us gets out of here alive.” That quote alone can make anyone realize the importance of palliative care. In educating folks in this industry, what are some of the misconceptions that the public and even medical professionals have about hospice care and palliative care?
We start by defining both terms, hospice care, and palliative care. All hospice care is palliative care, but palliative care is not always under the umbrella of hospice care. Palliative care is an extra layer of support for patients with serious illness and their families to improve their quality of life. This can be thought of as pain and symptom management and navigating the health care system. Palliative care is about teaching health care professionals how to have better conversations with patients and families about what matters most to them in life. Most people will say, “I just want to get better.” Well, what does that mean to you? For some patients, “better” means that they can sit in a recliner and their grandchildren can visit them. It is not always some big wish list item like going to Las Vegas for a weekend. Most of the time, patients want to conduct their lives normally, with minimal pain and suffering. Through facilitating these types of conversations, our goal is to improve symptoms and thus improve their quality of life by whatever means.
Hospice care is palliative care provided at the end of life, and most people utilize hospice far too late. Unfortunately, the only time people consider hospice care for their loved ones is when symptoms progress to their worst state. I have never had anybody say, “Oh, I enrolled in hospice too soon.” It is always, “We should have done this long ago.” Hospice care brings a whole team of professionals to wrap their arms around the patient and family to provide support. I am sure that it takes a lot of deliberation and discussion for families and the patient to even make that decision. For most families, choosing hospice care for their loved ones is perceived as giving up on them. On the contrary, hospice care changes the focus of the treatments to better suit the patient’s immediate needs.
A lot of doctors and medical professionals still perceive hospice care as giving up but it is only changing the focus of treatments.
What are some of the misconceptions and barriers that come up in conversations about hospice care and palliative care?
That is a good question, and it does not have one answer. When Medicare came into being in 1965, the average age at the time of death was 66. Nobody at the time, including Lyndon Baynes Johnson and the Congress, ever imagined living to ninety or one hundred years old. In the 1960s and 70s, people either died or got well. Even though treatments and medical technology have advanced since that time, older Americans would need more support and Medicare did not have a chronic or custodial insurance benefit that paid for extra care in the home. That is a barrier for people. For patients, hospital and skilled nursing home care is paid for. But getting help with in-home medication and care is not paid for. Hospice care is a generous benefit, but it has not changed much since 1982. Since then, hospitals have developed palliative care teams, but there is little to no home-based care funding for that function. As the number of older people continues to climb, the number of younger people to take care of them has not matched that. It is certainly not a high-paying job to be a caregiver and we should do something about that.
This is all very intense! Throughout all of your important engagements, what do you do to wind down, decompress, or have fun?
I read books. My mother died in her sleep in 2013 at age 86 at a family reunion. What a place to go, right? But anyway, when I went off to medical school, she challenged me and made me promise to read at least one novel every month.
What is your favorite genre of books to read?
I have recently been reading historical fiction. I am embarrassed to say this, but I did not know much about Stalin’s starvation campaign against Ukraine until I read The Memory Keepers of Kyiv by Erin Litteken. Another book that I read recently was Lessons in Chemistry by Bonnie Garmus. This book was at the top bestseller list, and it is about being a woman scientist in the fifties. I do not like science fiction or horror books.
I have two sons, two daughters-in-law, and no grandchildren. We go to LSU, Saints, and Pelican sporting events. My husband went to Texas Tech, and we are the only people who take vacations in Lubbock for football games. We also love outdoor activities like water skiing and taking walks.
So awesome! It sounds like you are enjoying life while actively saving people.
Well, if you talk to people, I do not save anybody. I just help make their journey better. I hope to make their end-of-life transition much more comfortable. That is just as important.
