Faculty Feature: Danetta Sloan on Community-Based Advance Care Planning

HBS faculty member, Danetta Sloan, discusses her work to address disparities in advance care planning and end-of-life care. 

Role: Assistant scientist
Years with HBS: 2016 - present
Fun fact: “As a hobby, I take operatic voice lessons and sing in a semi-annual recital.”
 

Danetta Sloan, PhD, received her doctorate in 2014 from the Catholic University of America. She was an HBS postdoctoral fellow from 2016 to 2018, conducting faith-centered palliative care research alongside HBS professor, Janice Bowie, PhD. Sloan was recently selected by the Cambia Health Foundation to join the Sojourns Scholar Leadership Program, which supports leaders in the field of palliative care.

What sparked your interest in advance care planning and palliative care?

I started my career in mental health after completing a master's in experimental psychology. I thought that was where I was going to remain, but then I joined the Department of Health Policy and Management as a research coordinator. I started working with the palliative care research community and was bitten by the palliative care bug.

I initially focused my work on spirituality and healing in palliative care. When I became a social worker, especially a hospice home care social worker, I started seeing disparities in the care and quality of end-of-life care.

I saw firsthand what happens when people haven’t thought in advance about how they want to live out the rest of their life, especially if they have a chronic, life-limiting illness and find themselves unable to speak for themselves. I felt that that was a place where I might be able to make a difference.

What is advance care planning?

When people hear advance care planning or palliative care, many automatically think it’s about death and dying, but it isn’t.

Advance care planning is basically about having conversations – having conversations about how you want to be taken care of in case something happens. It’s what you want your treatment to look like and how you want to be treated. It can involve everything from making sure you have a health care proxy to legal and financial planning.

Why is advance care planning so important?

Advance care planning alleviates the burden on families and caregivers. It allows your family to be with you when something happens and limits the stressful, difficult conversations you face as you are going through a crisis.

Especially for informal caregivers, it helps them know in the process of caring for you, how they should care for you.

Advance care planning is really a protection of the relationships that you have with your family. It allows you to move through challenges and continue to be there for each other. Research has shown that advance care planning also improves quality of life at the end of life.

Despite the significance of advance care planning in improving end-of-life care, inequities persist.

Would you elaborate on the disparities in end-of-life care and what steps are needed to address them?

Less than 33% of adults participate in advance care planning, with African Americans reporting the lowest rates compared to other populations. Inequities expand to palliative care treatment and end-of-life care and are seen at individual, community, and organizational levels. These are all impacted by health policy and models of care.

Literature consistently tells us that the lack of access to and awareness of palliative and end-of-life care leads to less goal-concordant care, more life-sustaining treatment at the end of life, and fewer hospice admissions in African American communities. Especially when we look at the utilization of hospice care, there are disparities in utilization between African American (31%) and whites (47%) at the end of life.

There has been some improvement in terms of the uptake in palliative care services, which focus on symptom management and pain control. Palliative care should begin at the diagnosis of a chronic, life-limiting illness. Palliative care is really about maintaining quality of life.

Many people, especially in Black communities, aren’t familiar with palliative or hospice care. What they do know is that they need some help at home, which they often aren’t getting. It’s critical that we provide people with the knowledge they need to determine how they want to be cared for as they grow older. I believe increasing health literacy in palliative and end-of-life care is a starting place.

The Institute of Medicine’s 2014 report on “Dying in America” highlights systematic deficiencies in the provision of end-of-life care and recommends a model for advance care planning as a solution, which encompasses “a process of discussing end-of-life care, clarifying related values and goals, and seeing that written documents and medical orders embody patients’ wishes.”

How has your own work aimed to tackle those disparities in advance care planning and end-of-life care?

My work in palliative and end-of-life care addresses inequities in access and awareness by building capacity in African American communities, through education and skill building with church leaders and parishioners.

We need more community-based interventions targeted to different populations and cultures – not just one approach to advance care planning. When we think about cultural humility, healthcare systems need to consider what is most meaningful to people and what their values are towards life and towards the end of life.

That’s only done through partnerships between the healthcare community, the academic community, and the lay community.

My focus is the lay faith community. Some of my research has confirmed that promoting the church for community-specific resources, both services and education related to advanced illness care, is extremely important in the African American community.

Research suggests that community-based, faith-sensitive advance care planning that is responsive to individual and cultural beliefs would likely improve advance care planning in African American communities.

That work came out of a survey of 930 people over a weekend from two different churches where we asked caregivers if end-of-life care was important to them. Overwhelmingly, they said yes. 93 percent of them said they would be interested in learning more about end-of-life care. This research was completed during my post-doctoral training led by Janice Bowie. This is the foundation for the research that I’ve completed since.

What are some of your current projects and research initatives?

I have two parallel studies going on at once through partnerships with churches in Maryland and Virginia.

The first project is through the Cambia Health Foundation, and it looks at adding faith language to an advance care planning guide also called an advance directive. The goal here really is to examine the impact of adding faith language to set the context of an advance care planning guide, a legal document in Maryland, Virginia and Washington, DC. The questions can’t be changed, but I can add information prior to the directions. The guide documents the outcome of the advance care conversation. It provides information about how you want to be cared for if you are unable to speak for yourself.

I’m working with church ministers and pastors to identify faith language we can use to frame Maryland’s advance care directive. The study will determine if adding faith language makes a difference in completion rates.

The second is study is also working with the faith community. I’m revising a curriculum from UsAgainstAlzheimer's for use within the faith community. The goal is to embed information and resources about dementia, Alzheimer’s, and brain health. For the purposes of the project, I’m calling it future care planning. It aims to educate caregivers around future care for those experiencing dementia, such as end-of-life care, legal, and financial planning.

This interview has been edited and compressed.