Academic journal article Generations

Understanding Cultural Gaps and Disparities in Advanced Illness Care

Academic journal article Generations

Understanding Cultural Gaps and Disparities in Advanced Illness Care

Article excerpt

To achieve person-centered end-of life care, we must address the cultural disparities in how each of us approaches this journey through a continual conversation that includes the person receiving care, family, caregivers, healthcare professionals, and spiritual advisors. On behalf of Generations journal, Marian Grant, director of Policy and Professional Engagement at the Coalition to Transform Advanced Care (C-TAC) in Washington, D.C., interviewed two people via phone who are intimately involved in advanced illness care, and who come from varied vantage points. Rev. Tyrone Pitts, D.Min., is the general secretary emeritus of the Progressive National Baptist Convention, chairman of the Board of the Morehouse School of Religion, and a senior advisor at C-TAC, Dr. Rebecca Aslakson is an associate professor of Anesthesiology and Critical Care Medicine at the Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland. She works as a physician in the surgical intensive care and palliative care units there, and is a palliative care researcher.

Generations: You each have served in various roles regarding advanced illness and are both committed to helping the community to be more engaged in improving this type of care. What does it mean to "live well until the end" from a personal or community perspective?

Rev. Pitts (TP): As a person of faith, the phrase 'to live well until the end' captures the true meaning and significance of human existence. It recognizes the presence of God and spirituality in [the] human community. This phrase takes into account the importance of one's transition from this life to the next. This journey of "to live well until the end," I believe, continues after my last human breath ends and once again transitions to its spiritual realm.

From a community perspective 'to live well until the end' calls upon health professionals, clinicians, hospitals, health plans, health systems, caregivers, and community and interfaith leaders to work together to promote a more loving and just society in which persons with advanced illness are afforded quality medical care that is comprehensive, person-centered, and honors their dignity, while at the same time fulfilling their emotional and spiritual needs. This approach to living well provides an opportunity for persons with advanced illness to peacefully transition from this life to the next, receiving the personal and spiritual support they need by respecting their wishes, their family's wishes, and the wishes of their community.

This approach to the concept of living well compels clinicians, health professionals, health providers, and interfaith and community leaders to celebrate the person's life by respecting their faith and beliefs in the power of the Holy Spirit to heal them, even if in [the health professionals'] opinion curing them is not possible. It also means that health professionals will use the best medical and technological advances at their disposal to alleviate the pain and suffering of persons with advanced illness, irrespective of cost. 'Living well until the end' challenges us all to make the life of persons with advanced illness meaningful and productive, providing them with the best care possible.

Rebecca Aslakson (RA): Living well is a personal decision; the expression is "if you've seen one death, you've seen one death," because there is no common theme.

From a palliative-care perspective, my role is to understand each person's goals and expectations, to also know the reality of what can be reasonably done medically, and then to match what medical resources are available with the person's goals for their unique journey. If patients or families have unrealistic expectations, they need experienced clinicians to help steer them to a more practical plan. That is challenging when patients and families are asking for impossible treatments, or treatments that aren't medically appropriate, and [such a challenge] calls for expert communication skills on the part of the clinician. …

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