So Many Ways to Say Goodbye: Talking with Families About Final Arrangements

The readiness of families to discuss final arrangements for the deceased is dependent on a myriad of factors including if the loved one has indicated his or her preferences, the patient and family’s level of denial, the amount of time available to prepare for the death, and religious preferences. Financial concerns may be kept private and delay the decision making process. The relationship between the family to the newly deceased and conflict amongst family members may also impede the planning process. Patients lacking a support network may be unprepared to share their wishes and die before plans are formulated. Regardless of the specific circumstances, it is an important role of the hospice team to assist in preparing the family to plan for the dying person’s remains.

The hospice team enters the end of life arena in many stages of the process and thus, may have from hours to days to months to offer education and guidance regarding final arrangements. In the best of circumstances, pre-planning is complete and uncontested by the survivors thereby eliminating the need for hospice intervention. In the most challenging situation, there are no plans, the patient’s wishes may be unknown, and financial issues may be at play. This article will provide information about regulations regarding the body of the deceased, offer a variety of final arrangement options, and explore the tools which the hospice team can use to engage families in the decision making process.

It is commonly believed that once a loved one dies, his or her body must be picked up by the funeral home within hours. Traditionally, this marked the embarking of a process which involved writing an obituary, gathering photos for the wake, choosing pallbearers, and meeting with the clergy. For those who held dear the preferences or teachings of their religion, there was little room for flexibility in the way a loved one was laid to rest. For example, Jewish burial customs consist of allowing the body to decompose naturally and thus cremation and embalming is forbidden. The burial takes place shortly after the death occurs. If, however, religion is not a guiding force in end of life planning, there can be greater flexibility in designing services which are personalized, creative, and meet financial needs. To elaborate further, the body can remain in the home. If the death occurs in a nursing home or hospital, the body can be brought home without embalming as a requirement.

“Keeping or bringing a loved one home after death is legal in every state for bathing, dressing, private viewing, and ceremony as the family chooses. Every state recognizes the next-of-kin’s custody and control of the body that allows the opportunity to hold a home vigil. Religious observations, family gatherings, memorials, and private events are not under the jurisdiction of the State or professionals in the funeral industry, who have no medico-legal authority unless it is transferred to them when they are paid for service.”

The National Home Funeral Alliance (NHFA)

Although families often bury their loved ones within a short time frame, it is not necessary. With cremation as an option, services can be planned well into the future.

Saret was an 80-year-old Cambodian woman on hospice services for a diagnosis of cancer.  She was also receiving dialysis for end stage renal disease. During one Friday after her dialysis treatment, she told her grandson that if she died at dialysis, she wished to be brought home to her family and then, after 24 hours, to be delivered to the temple for a ceremony. Three days later, Saret died during her dialysis treatment. The social worker on duty contacted the hospice social worker to collaborate on this death event. The patient’s death was pronounced by the nephrologist and her body was moved into the conference room as family members began to arrive. The grandson, the spokesperson for the family, stated that Saret asked to be driven home in his car—as she had done 3 times per week for two years. This was the family’s attempt to respect Saret’s directives as well as to save on the cost of transportation through the funeral home. Because the dialysis clinic had never experienced this before, the social worker began making phone calls until a representative at City Hall confirmed that Saret could be driven home. With help from the hospice staff, the family carried Saret to the car for her last ride home. The hospice social worker and chaplain coordinated a joint home visit to offer grief support. It was a sad but rewarding day for all involved.

Regarding cremation, Carrns noted that “cremation has generally become more culturally acceptable. The association’s research found that the portion of people age 40 and older who feel it is important to have a religious aspect as part of a funeral has declined to 35 percent in 2019 from about half in 2012.” Cremation not only reduces time pressures, it also costs less and allows cremains to be buried, kept at home, divided among family members, mixed with pet cremains, or scattered in ways which honor the passions and personality of the deceased. Programs are ever evolving including cremains becoming part of a coral reef, dropped from an airplane, buried with a tree seed, and having them made into memorial artwork or jewelry.

Green burials are also becoming popular. The concept of a green burial includes dissolving a body without fire, burial without a vault or grave liner, composting a body in soil until decomposed and eventually returning the soil to the family, or burial in a recycled cardboard vessel.

“Concerns about pollution, appropriate land and energy use, and the depersonalization of the dying process, as well as a Baby Boom demographic that puts 80 million Americans over the edge in the next couple of decades, are driving the natural burial trend.”

Beal

The lack of land and resources are shifting the current trends, paving the way for the next creative generation.

Being aware of options regarding final services or celebrations is only one portion of the skills needed to talk to patients and families as they experience the end of life journey. It is imperative to join with the family as they struggle through anticipatory grief and sorrow while providing care at home or sitting vigil at the nursing home, hospital, or hospice house. If trust has been established and the patient/family’s relationship with the hospice team has evolved over time, then it is possible to ease into the discussion about service planning. If not, then a more direct approach may need to be employed to bring thoughts and ideas to the forefront. With careful interviewing and use of the following steps, the hospice team should be successful in achieving the goal.

  1. Assess. Using exploratory open ended questions, determine if pre-planning has occurred, the patient has expressed wishes, or if the family has given thought to managing final arrangements. If the patient is unable to contribute information or has died, identify which family member or members are responsible for decision making. If the issue of finances is raised, gather details to use later should referrals for assistance be needed. If the family is not ready for the discussion, then remind the family that the issue will be raised again at a later date and, if possible, state a time frame determined by the condition of the patient. If the patient has died, be firm yet compassionate in emphasizing that time is of the essence. When the family is ready to engage, facilitate a review of the patient’s life, passions and personality as a starting point for planning. Incorporate financial information, potential time frames for traveling family members, and allow all present to have a voice. Question how former loved ones have chosen to be honored, where family members may be buried, plots owned or available, and religious influences for the family. It may be simpler to help the family choose a funeral home, but leading this discussion can invite laughter, storytelling, bonding, and allow grieving to begin.
  2. Normalize. Normalization is an effective technique to use in moving concrete plans forward. Use curiosity to engage family members in sharing other occasions when choosing final arrangements were necessary. What processes might they have witnessed when their elders carried this responsibility? Share experience gained from working with other families in their situation. Discuss how difficult decision making can be when under duress from a recent or impending loss or when exhaustion has set in and the task at hand seems overwhelming. It may be appropriate to provide education on the development of funeral homes and the affirmation that generations of families have been faced with the same responsibility they are now confronting.
  3. Prioritize. If the death occurs at home, the most pressing decision involves when to remove the body. If the death occurs within a hospital, nursing home, or hospice house, the family must be prepared to bring the body home or to the funeral home. Direct cremation means that an immediate wake and funeral are not desired. A holding period of 48 hours prior to cremation is commonplace to allow the medical examiner’s involvement (if needed) and ensure the body is available if an autopsy needs to be performed. Online resources (such as Funeralocity) are available if the decision is made to move the body to a funeral home and one has not been selected. The hospice team may have fulfilled their responsibility in encouraging the family to embark on the planning process and further detailed planning may be provided by the funeral home staff. Teaching the family about what to expect at the next step will be helpful, including regulations which dictate funeral home operations.
  4. Collaborate. A team effort may be needed to bring final arrangements to fruition. If a hospice nurse or chaplain is asked to lead the effort of planning, the social worker may be asked to refer the family to financial assistance programs. A Veterans Outreach Officer consultation may be needed. It is common for the hospice chaplain to be asked to participate in services and the music therapist to be invited to play at a celebration of life. During interactions between hospice and the bereaved family members—especially when planning for end of life—role modeling, naming, and encouraging collaboration between family members will bring satisfying results. The more family members are involved, the greater the potential for conflict. But, with persistence, negotiation techniques, limit setting, and consistent communication, final decisions may be made and the deceased can be laid to rest in a respectful and meaningful way.

References

National Home Funeral Alliance (NHFA). (n.d.). State requirements for home funerals. National Home Funeral Alliance. Retrieved from https://www.homefuneralalliance.org/state-requirements.html

Carrns, Ann. (2019, July 26) What to know when choosing cremation. The New York Times. Retrieved from https://www.nytimes.com/2019/07/26/your-money/funeral-cremation-burial.html

Beal, C.A. (n.d.). Be a tree; the natural burial guide for turning yourself into a forest. Be a Tree.com. Retrieved from https://www.beatree.com/2007/09/natural-burial-.html.