The fear of death is why we build cathedrals, have children, declare war and watch cat videos online at 3 a.m.
~ Caitlin Doughty from Smoke Gets in Your Eyes: And Other Lessons from the Crematory
If all of us would make an all-out effort to contemplate our own death, to deal with our anxieties surrounding the concept of our death, and to help others familiarize themselves with these thoughts, perhaps there could be less destructiveness around us.
~ Elisabeth Kübler-Ross from On Death & Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families
Death is universal. Those who are human die.
Although death is a universal human experience, Americans typically do not engage in everyday conversations about grief, loss, death, and dying. When my husband, a retired hospice chaplain, and I, a facilitator of grief support groups, explain to others about our work, we frequently hear, “That’s hard. I could never do that.” This points toward the anxiety that we have about grief, loss, death, and dying. Such anxiety may drive us to spend energy and money hiding from this human reality.
Consider the studies cited by Barbara Reich, indicating that we seem more likely to extend life for the terminally ill. Reich notes that an apparent difference exists between what most terminally ill patients state is their desire (comfort care) and what many in reality experience (life-prolonging care,[1] or I would add that maybe a better phrase is death-prolonging care). Moreover, data from Medicare indicates that those in the US fail to utilize hospice to its full potential, leading to overuse of intensive medical care and increased harm to the patients.[2]
Additionally, many of us in our society hope for a miracle when diagnosed with a terminal illness. A study, published in 2018, discovered that 68 percent of Millennials and 80 percent of Generation Xers, Boomers, and those born prior to 1946 in the United States believe in religious miracles.[3] Beliefs in miracles, be it medical or religious, may lead some to avoid palliative care or hospice as they hold out for a miraculous cure in the face of a terminal illness.
This raises the question: If we are hopeful for a miracle, all the while knowing that we will eventually die, how do we approach grief, loss, death, and dying?
The Research Project . . .
My current project seeks to answer the aforementioned question by hearing from those who either have a strong belief in the miraculous and/or are employed in the death and dying care industry.
First, this project is open to those who strongly believe in divine healing, namely Pentecostals/ Charismatics.
Therefore, I am conducting interviews with those who meet the following criteria:
- adults over the age of 21;
- currently self-identify as Pentecostal or Charismatic; and
- identify as one of the following:
- A family member or close friend who was the primary hospice contact for a Pentecostal or Charismatic friend or relative on hospice. It is requested that the death of the person who was on hospice be within the last 3 years
- Funeral directors or morticians—must be certified or licensed in their occupation and serving in this capacity for a minimum of one year. Retired persons in this field will be considered.
- Hospice employees as specified below:
- Hospice chaplains
- Hospice music therapists
- Hospice RNs or LPNs
- Hospice social workers
- Hospice MD
Second, this project is open to those who are employed in the death/dying care industry, no matter of their faith tradition.
Therefore, if you are employed in the death/dying care industry, this research inquires how you approach grief, loss, death, and dying by way of an online survey. An online survey is available to the following types of people:
- funeral director and/or mortician
- hospice employee who is a: chaplain, RN, LPN, social worker, MD, or music therapist
The online surveys, which are open to those of any belief system, are divided into two parts: classification questions and open-ended questions. The classification questions help to determine employees’ eligibility for the project, and if they qualify, they will be presented with three REQUIRED, open-ended questions and one OPTIONAL, open-ended question. The survey will take approximately twenty minutes to complete. Participants are anonymous unless they choose to identify themselves.
If you are interested in participating in this research project either through an interview or an online survey, please contact me at: healing101.research@gmail.com. When contacting me via email, please keep the following in mind:
- For those who are eligible for an interview, please identify yourself as Pentecostal or Charismatic and which of the following you self-identify:
- family member or close friend who was the primary hospice contact; or
- hospice employee (chaplain, MD, music therapist, social worker, RN or LPN); or
- funeral director/mortician
- For those who are eligible for an online survey, please state in the email that you are either a “hospice employee” or “funeral director” so that I send you the appropriate link.
Whether or not you fit the criteria . . .
I request that you spread the word. I am relying on the assistance of others to tell potential participants about this research project; therefore, would you consider sharing this post on social media or with other friends and family?
[1] Barbara A. Reich, “The Conundrum: How Much Medical Care Is ‘Enough’?” Chapter in Intimations of Mortality: Medical Decision-Making at the End of Life (Cambridge: Cambridge University Press, 2022), 3.
[2] Ibid., 12-13.
[3] Sarah Wilkins-Laflamme, Religion, Spirituality, and Secularity among Millennials (London: Routledge, 2023), 49, 5, doi: 10.4324/9781003217695 and Eric Widera, Kenneth Rosenfield, Erik Fromme, Daniel Sulmasy, and Robert Arnold, “Approaching Patients and Family Members Who Hope for a Miracle,” Journal of Pain and Symptom Management 42, no. 1 (2011): 119-125, doi: 10.1016/j.jpainsymman.2011.03.008.