Disparities in End-of-Life Care
Social barriers, stress, avoidance and lack of knowledge are leading to huge disparities in end-of-life planning and care in the United States.
Shouldn't end-of-life planning be a normal and natural part of our lives? Shouldn't resources and support be accessible for all?
A recent study (Orlovic, Warraich, Wolf and Mossialos, 2021) explored the accessibility and awareness of end-of-life planning based on a variety of factors, to see if there was equitable access and get a gauge on how people in the United States are approaching EOL planning, if at all.
The results left room for improvement.
Myth: End-of-life planning is equally accessible and common among all US populations.
The study revealed a variety of disparities in end-of-life care and planning. Differences were observed depending upon factors like age, ethnicity and race, education and diagnosis. There are also barriers to equal care and support based upon gender identity and sexual orientation as evidenced by other studies. There was little information on how these identity factors may create even more complexities and barriers in intersectional cases. Read below to learn more.
Age-Based Disparities in End-of-Life Planning
Reality: People often put off end-of-life planning until what they consider an old age. This causes issues with unexpected death and diagnoses. "Individuals who die at a very old age (e.g. 100 years) will almost certainly have a living will immediately prior to death (97.5%), while the analogous probability for individuals who die at age 80 is much lower (38.1%). Lastly, most individuals don't initiate a living will until age 75 or older" (Orlovic, Warraich, Wolf & Mossialos, 2021). It's time to raise awareness about the importance of end-of-life planning and offer people the resources to do so much sooner.
Ethnic- and Racial-Based Disparities in End-of-Life Planning
Reality: The reality of the differences experienced by individuals based upon their race or ethnicity is undeniable. It seems that when combined with age, the results are even more troubling. "Non-Hispanic Whites dying at age 100 will almost certainly have a living will (99.2%), while the same probability among Non-Hispanic Blacks dying at the same age is much lower (37.5%)" (Orlovic, Warraich, Wolf & Mossialos, 2021). This should also be considered from the point of view of average lifespan for various communities, as this study was done using the age 100 as a benchmark. Such a high age certainly skewed the results, and it is clear the disparities are much more significant. "The differences are even larger for individuals who die younger, indicating the importance of ethnicity and race for end-of-life planning" (Orlovic, Warraich, Wolf & Mossialos, 2021).
Education-Based Disparities in End-of-Life Planning
Reality: There is a truly shocking difference in the likelihood of engaging in end-of-life planning depending upon whether or not one has attended college or not. This level of barrier is simly unacceptable and has to change. "A college-educated individual who dies at age 80 years has 79.1% probability of having a living will, while someone with only a basic education dying at the same age has only a 2.4% probability of having a living will" (Orlovic, Warraich, Wolf & Mossialos, 2021).
Diagnosis-Based Disparities in End-of-Life Planning
Reality: Different diagnoses receive different amounts of support and research. As a result, less measures are in place for a variety of conditions and diagnoses. "While patients with cancer are most likely to have an advance care plan, patients with heart disease, the most common cause of death in the US, are least likely to have an advance care plan" (Orlovic, Warraich, Wolf & Mossialos, 2021).
Gender Identity and Sexual Orientation-Based Disparities in End-of-Life Planning
Reality: There is even less research and information on the experiences of the LGBTQIA+ community, itself signaling a disparity in care. Particular issues centered around continuity of care and the never-ending question of whether to disclose sexual or gender identity or not with each new care provider encountered. "Transitions in care raise particular challenges for LGBT patients, including provider communication, perceptions of safety and acceptance, and assessing and respecting patients’ definitions of family and spirituality" (Cloyes, Hull & Davis, 2018).
Is Avoidance to Blame?
Aside from political and societal factors, avoidance seems to be a universally human experience. Even though death is an inevitable part of everyone's journey, end-of-life planning in the US is so taboo that over half of Americans feel stressed when they think about making arrangements for it. In fact, 56% of Americans say they feel stressed out when they think about end-of-life planning ( nformation Source: New York Life Foundation's Bereavement Study 2017). Of course, this seems logical and natural; however, for many, this leads to avoiding the issue altogether. The natural tendency to avoid for some is compounded when those societal barriers are layered on top, leading to the vast disparities noted above.
Center for the Heart is working to raise the bar on the way people think of and approach death. End-of-life doulas help ensure that the death experience is agentic, or filled with agency. Agency is the feeling that one has a say or the power to affect change, that one is listened to and honored. Yet, with unequal awareness of what an end-of-life doula is and economic and locational barriers to access, not all are able to benefit from vital end-of-life doula support.
How End-of-Life Doulas Can Help
Have you heard of an end-of-life doula? For most people, the answer is no. If you have, do you think we are only for the moments before death? Don't worry if you said yes. That's also the answer for most people.
In reality, end-of-life doulas can come into play looonnngggg before death. At Center for the Heart, we envision a society where end-of-life doulas have an integral role. A society where all people have intentional deaths. End-of-life doula support increases the likelihood that the person dying (regardless of the cause of death) is empowered, comfortable and even peaceful. This translates to those that are left behind having a less complicated grieving process, which ripples through society in a myriad of positive ways. Is this vision a world you'd want to be a part of? If so, read on to learn more…
What is an end-of-life doula?
The world “doula” comes from the Greek word meaning women caring for women. But today, a doula can serve anyone. End-of-life doulas have an innovative approach to the care of those nearing end-of-life, the dying and those in their lives. We emphasize the importance of relationships, uniqueness, legacy and a peaceful and meaningful death and end-of-life.
End-of-life doulas give practical and emotional support for the dying and those close to them. Our approach is grief-informed.Our final moments of life should be treated with the same importance as the first, no matter income or past actions.
What makes a "good" doula?
The core of a doula’s work is ensuring the wishes of the person dying or in the end-of-life phase (& of those close to them) are met. We ask open-ended questions helping clients tease out their needs & wishes. We assist with logistics & resourcing. Our scope includes...
Comfort Care & Vigil plans
Legacy projects
Advanced directives
Anything related to EOL
End-of-life doulas are a pillar of courage, holding space for the individual & grieving family, guiding them to fulfill the intentions they set. We center on one client, their family & caregivers, while other EOL workers must often attend to many individuals & groups at once. We keep within our boundaries, complementing hospice, social workers, chaplains and other EOL professionals.
When to Ask for an End-of-Life Doula
You may think end-of-life doulas are only for the last days before death or at least when there has been a terminal diagnosis, but they can actually be engaged at various points long before death. Here's how and when they can help.
When Someone Has a Terminal Diagnosis - Perhaps they've been released from the hospital with no other care options aside from going into hospice or palliative care. It could be they're still healthy, but they have a diagnosis and are later on in years. A doula can come into play very, very early - a year, two years out, then all the way through to the end.
When Death Is Imminent - Regardless of the length of our relationship with the client before, when it is in the final hours, we come in and really focus on the dynamics of the family and/or care team interacting with the person who is getting ready to die. We facilitate the comfort and peace of the person dying and their loved ones.
Long-term, Proactive Planning - Some people call in for end-of-life planning while they're still healthy. They want to plan far in advance for all aspects of their end of life. This is especially true if there isn't a lot of family or support close by. In this case, the doula can help with every last detail of their end-of-life experience and afterwards, as well as any legacy work, helping to connect the client with various resources, where relevant.
Complex Situations - There are more complex cases in which end-of-life doulas come in to offer additional support as part of a larger team or to help bridge any communication or care gaps. We are often the person that's called in when a caregiver, other provider or family member doesn't know where else to go for help. We use creativity to troubleshoot in a very compassionate, caring way. We watch, listen, see exactly what's going on with the person. We try to develop a rapport and facilitate interactions with others.
How Can We Help Bridge the Gap?
Center for the Heart is dedicated to providing end-of-life support to ALL people. We are amazing resources for your end-of-life planning - not only in terms of near death decisions, but also for more advanced planning. A good place to start is our free End-of-Life Care Planning Guide, which can help guide you through these important decisions.
Partner with us by supporting our mission to ensure all people have compassionate care before, during and after a death. There are so many ways to get involved:
Donations to Center for the Heart
One hundred percent of every donation received by Center for the Heart helps us provide critical end-of-life services and compassionate grief support services FREE of charge or discounted to anyone struggling to cover the cost! There are a few key ways to give:
Make a one-time gift - Donate now!
Become a monthly supporter with a recurring donation - After selecting the amount that you would like to contribute, you can then decide to make it a monthly contribution. Schedule a recurring gift here!
Give in honor of a loved one
Sponsor an event - learn more here!
Volunteering at Center for the Heart
Volunteers are the heart of what we do, and there are three key ways to be involved at Center for the Heart
One-Time Volunteer Opportunities - See our individual volunteer needs here!
Committees - Find out how to join a Center for the Heart committee. We need your help!
Special Skills Volunteers - If you have special skills to share, please consider giving your time and talent. More information here!
Joining the Center for the Heart Community on Email and Social
Following us and signing up for our email list is a great way to begin getting involved with the Center! You'll be exposed to lots of enriching information that can increase your own grief and death literacy, in addition to knowing about the Center's programs, mission and all of our volunteer and fundraising opportunities. Join our email community and socials now!
Spreading the Word about Center for the Heart
Telling others about Center for the Heart is an amazing way to ensure that we move closer to our mission of providing compassionate care before, during and after death! If you know of anyone who may benefit from the Center's services or who could help the Center in fundraising, volunteering, partnerships or any other way, please share our info!
