Abstract:
Having faith and upholding the tenets of one’s belief system is instrumental throughout an individual’s life span, especially at the end of life. But faith is an individualized concept. With the faith community and places of worship being such an essential part of the African American experience, this article explores the question of whether faith hinders or helps at the end of life. The African-American community’s low utilization rate of end-of-life services such as hospice care is alarming. The time has come to offer more understanding and promote better outcomes.
Key Words:
faith, end of life, trust, faith community, hospice, African American faith communities
While faith, religion, and spirituality are large components of many individuals’ lives, research shows that the African American community as a group hold their beliefs—shaped by their foundations in faith and faith traditions—in high regard. This fact is displayed often when a member of this community is impacted by a difficult, life-limiting or terminal diagnosis, with poor prognosis and the winding, sometimes hard-to-navigate path through advanced illness begins. The end-of-life care journey can be complicated just by the nature of the experience, but also death and dying are not topics that generally spur the masses to run to the table for meaningful conversations. Although it is relevant discussion for every person and their support team, there are so many different perspectives on the end-of-life process, influenced largely by beliefs, that it tends to leave many hesitant to approach the subject.
It has been documented that some members of faith communities will share news of their illness with their pastor or religious leader before they share that information with family or friends. One reason this is thought to be the case is due to the vulnerability experienced by the person being diagnosed. The person dealing with the prognosis would seek prayers, potentially for healing or strength, but there is, in that moment and the days ahead, also a need to feel safe and supported by trusted individuals. Those who have noted their faith to be a foundational pillar in their lives affirm that their faith leader is among the first people they will call to talk about one of life’s most difficult challenges. The overarching thought is that the faith leader has been divinely commissioned to steward and shepherd the spiritual journey of their congregants and therefore should be included in conversations related to anything that might challenge their faith, including advanced illnesses.
African American Distrust in the Healthcare System Can Spur Overtreatment
It has also been well documented that many African Americans, especially older adults, experience a great deal of mistrust in the medical system, particularly when it comes to end-of-life care decisions, planning, and suggestions to forego disease-altering interventions. Reliance upon the faith leader becomes extremely relevant in cases where the patient perceives the care provider or medical professional to be less concerned with their life, the quality of their life, or to even have ulterior motivation for making suggestions related to the treatment of advanced illness.
It is no secret that the African American community specifically, but also other underserved and undervalued groups have suffered injustices on many fronts related to healthcare and healthcare systems. In an interview, Dr. Kimberly Johnson, a geriatrician and at the time an associate professor of medicine at Duke University, said that for African Americans, the history of abuse is not a cultural artifact (Varney, 2022). The toxic distrust of the healthcare system is still deeply felt today.
It is believed that this concept is why African American patients are more likely to pursue aggressive treatment and interventions, even when the prognosis and projected outcomes for their condition are poor. It is so important to consider the lived experience of individuals to shape better outcomes. As a collective care community, it is incumbent upon those providing care to understand and connect in intentional, meaningful ways, to improve care for all people, especially those who are historically and perpetually discounted.
In outreach to African American faith communities, hospice organizations have found that the common misconceptions about advanced illness care, as well as advanced care planning are steeped in the lack of understanding, lack of trust for providers, fear, family dynamics and experiences, as well as feelings of guilt about “giving-up” on life and other concepts that seem to directly conflict with ideals their faith traditions and spirituality support fundamentally.
Can Faith and Hospice Coexist?
With that, the question was asked of an 83-year-old African American woman journeying through two significantly challenging advanced illnesses for nearly a decade: Does faith flourish or falter in the face of adversity after finally accepting the support of hospice? Connie was, prior to her illness, a thriving church member, avid attendee, ministry leader, and healer who has end-stage renal disease and congestive heart failure. She was for many years the Dorcas, or community services leader, for her church in the Midwest, before relocating to Maryland and then later to Virginia, to be cared for by family.
After being hospitalized for more than a month due to an exacerbation of the congestive heart failure, Connie and her family were being offered the support of hospice. She and some members of her family were opposed to idea, as they did not fully understand what the care entailed, but rather had peripheral experience and little willingness to learn more or benefit from a meaningful conversation about it. Connie and her family thought that accepting hospice would automatically declare that she was giving up on God’s ability to heal and restore her. Without the full benefit of the right information, the focus on her faith was hindering her ability to embrace the promise of comfort in this time of distress. Her family erroneously thought that if they accepted the support of hospice, it would signify there was a lack of faith in God and his ability to defy the odds.
African American patients are more likely to pursue aggressive treatment and interventions, even with a poor prognosis.
Connie, being a revered member of her faith community, was also known to have the gift of healing. As a dedicated woman of faith and a powerful intercessory prayer warrior, Connie would be called to the bedside of many sick church and community members to offer prayer and to lay hands on them, as instructed in the bible. It was not uncommon for those very ill members of the community who had been touched by Connie to recover their health and offer many thanks to God for her “healing touch.” To have such a gift and then to be stricken with life-limiting illnesses was a devastating blow. Connie, unable to fully care for herself for extended periods of time, found herself in a testing of her faith.
Having witnessed many near death experiences over the years, Connie was able to offer insightful commentary in response to the question of faith. She proudly affirms her belief in the bible as the inspired Word of God, reminding all who would hear her, that according to the scripture Hebrews 11: “Now faith is the substance of things hoped for and the evidence of things not seen” (King James Version Bible (KJV), Zondervan 2002, Hebrews 11:1).
Connie, as with many other Christians (African American and otherwise), has found comfort in the belief that there is a God who sees and controls all things. From that perspective, it is believed that God will provide all that is necessary to overcome any adversity at hand, no matter what that is. Connie, a wife and mother of seven children but widowed early in life, has faced many difficult circumstances, and her trust and faith in God has been shaken, but never diminished.
After much conversation, respecting the role of faith in the African American experience, Connie and her family were able to recognize the benefit of receiving collaborative support that did not dismiss her faith, but rather complemented the concepts that she held fast to in her faith. After connecting to hospice care, Connie confessed that she was angry with God about the circumstances surrounding her illnesses and was for a time unable to connect functionally with her faith because she was focused on what she was seeing, feeling, and experiencing.
She was disappointed by her own outcome when she had been the conduit God used to produce so many miraculous outcomes for others. Her disappointment was a human response. It is our humanity that allows us to push through adversity and create opportunities for faith to grow as we continue to hope. However, it was not a truth that she wanted to readily share with her family.
Because she had been such a pillar of strength through the faith that she exhibited, she did not want her feelings to be misunderstood or misinterpreted by her family. Having the interdisciplinary support of the entire hospice team, especially the chaplain and social worker, gave Connie the ability to honor both her strong faith and her humanity in the process of end-of-life resolution that is of vital importance on this journey.
Various cultural and traditional perspectives differ from that of the African American Christian pathway, but, one foundational truth is congruent across the human experience. Each person’s set of beliefs, particularly their faith tradition, is a paramount component of their lived experience until life ends. The way their faith presents at the end-of-life may differ as they contemplate the idea of what is next, but there is no way to provide customized comfort care without understanding and respecting an individual on every level as they exist and hold space in this part of their journey.
Acceptance of Hospice Pans Out
Connie and her family were able to have vitally important support from a nonprofit hospice agency in Northern Virginia for more than a year through the most challenging times of her illnesses. Her condition stabilized to the point where the additional focused care was no longer needed, allowing her to “graduate,” or be discharged from the hospice program. She and her family now know that hospice is not a death sentence, and it isn’t about death and dying. It is about living well until the journey ends. While Connie remains terminally ill, receiving dialysis for her end-stage renal disease, she was able receive the blessing of hospice care when she needed it most and was able to learn experientially that faith is fulfilled by trusting God with the outcome, no matter the process.
Connie’s story, while unique, is not uncommon. Many hospice workers report the hesitancy experienced when working to support African American families. While there has been an uptick in advanced care planning and advanced illness care use, studies show that African Americans are significantly less likely to access these services. Hospice agencies have gained more success through partnerships with various faith communities. When hospice agencies offer education and support to local places of worship, congregants have become more amenable to conversations related to end-of-life planning. By having the difficult conversations, related to the advanced illness journey and the end of life at the place where many find comfort and solace relating to life’s challenges, this continues to build connectivity and trust. The place of worship for many people is one of the most trusted sources of information.
They thought accepting hospice would automatically declare that she was giving up on God’s ability to heal and restore her.
Trust is the foundation of connection. If a family does not feel the ability to connect with and thereby trust a provider, the opportunity to truly serve them is lost. While the provider may have the data and the guidance to provide support, the family may reject or misunderstand the information intended to support them.
A person facing advanced illness has quite often arrived at that place in their experience, after years of possible self-neglect, ignorance about the disease, denial, and other factors. An individual’s need to be seen as a person and not just a problem hinges upon their ability to trust that the provider has their best interest at heart. Unfortunately, this often isn’t the case, which is where the faith leader steps in.
A difficult diagnosis has the tendency to strip a person of their "armor." Sitting with a provider on the receiving end of very bad news leaves a person vulnerable. In that moment it is just the person and the provider. The unknown that a person faces in that moment requires the ability to be defenseless. Many people lack the support system to appropriately navigate the next steps and they must be able to look at the long (or short) road ahead with confidence that their provider is interested in and able to support their best outcomes, and if they cannot see that support from the provider, the place of worship and that faith leader often take over in these cases.
For so many, their faith community is the only “family” they have. Considering all that is at risk, the end-of-life journey must be view and cared for with delicacy. Until individuals are seen and regarded as whole persons, embodying mental, physical, emotional, financial, and spiritual elements of equal importance, they are not truly able to be served.
Faith, when engaged, fuels the life force and cannot be separated from the end-of-life experience. Providers of every human service would be better served and of better service to others if they recognized what is truly important to the individual on the receiving end of the care.
As one of Connie’s seven children, a business development professional in hospice care for more nearly 15 years, I can assure you that the data is often irrelevant to the care recipient. What matters most to many, especially in the African American community, is if a provider can see them, respect them, and honor what is important to them, even if the provider doesn’t understand or agree. As my mother often reminds me, the scripture Hebrews 11 says: “Now faith is the substance of things hoped for and the evidence of things not seen” (KJV, Zondervan 2002, Hebrews 11:1). I long for a day when all who travel this winding road of advanced illness to its end will find the comfort available to them, and though I do not yet see it, we are the evidence that it’s possible. All the caring, compassionate, pliable, teachable providers of care and human services, willing and committed to making a difference, are the evidence of the best things yet to come.
Donna Gayles is director, Client Relations-DC, and associate director of the Center for Health Equity at Capital Caring Health in Falls Church, VA. She may be contacted at dgayles@capitalcaring.org.
References
Varney, S., (2022). A Matter Of Faith And Trust: Why African-Americans Don’t Use Hospice. Kaiser Health News. Retrieved April 22, 2022, from https://khn.org/news/final-inequality-african-americans-and-hospice/?msclkid=6513a19fcc0911ec817272f9965e67b6.
Articles Used for Author Perspective
Johnson, J., et al. (2016). The Impact of Faith Beliefs on Perceptions of End-of-Life Care and Decision Making among African American Church Members. Journal of Palliative Medicine, 19(2), 143–8. http://doi.org/10.1089/jpm.2015.0238
Song, M. & Hanson, L., (2010). Relationships Between Psychosocial-Spiritual Well-Being and End-of-Life Preferences and Values in African American Dialysis Patients. Journal of Pain Symptom Management, 38(3), 372–80.
