Hospice social workers across the country will agree that the image of an intact family surrounding the bed of a dying grandmother is just that—an image. Societal changes in the last several decades have complicated the end-of-life picture. The opioid crisis, poverty, unemployment, and domestic violence are straining our communities while family systems continue to evolve. The divorce rate is dropping, and blended families are on the rise. The number of multigenerational households are increasing across the country as adult children are moving back home to live with their parents in unprecedented numbers. Furthermore, funeral planning is no longer as simple as deciding between cremation or burial. With these modern changes to family structure and the increased options related to funeral planning, hospice social workers must hone their negotiation skills, use their creativity, and conduct safety assessments to succeed in honoring their patients’ wishes while managing intense, potentially volatile, family relationships.
In past decades, families passed down death practices from one generation to the next and thus, predetermined standards for funeral services were in place. The norm has been to hold a wake, a funeral mass with the body present, followed by the burial in a graveyard. In 2018, the cremation rate surpassed the body burial rate and by 2035, it is estimated that the cremation rate will grow to 80%.
“As a nation, we have become more transient and less traditional, so the notion of cemetery plots for families to visit holds less significance.”Marsden
Funeral costs are prohibitive for many families and cremation allows time for loved ones to negotiate or battle for control. From becoming part of a coral reef, being buried with a tree seed, or being scattered in the ocean, the options for cremains can add another level of controversy for warring family members.
Home visiting social workers have become adept at assessing safety related to community violence, substance abuse, and family conflict. While most hospice and home care organizations train all disciplines on safety awareness, the social worker’s assessment is generally the most comprehensive, setting the tone for the interdisciplinary team members. In addition to asking questions about the patient’s support system, obtaining information about conflictual relationships, estrangement, and family coping styles is critical. Social workers must also engage in preventive interventions which include, but is not limited to, limit and boundary setting at the outset, creating a safe and comfortable space for the patient, and strengthening medication management.
“The use of opioids in hospice care—mostly by family and friends who have access to them—is an often overlooked facet of the national opioid crisis, according to experts in the hospice field.”Hafner
Hospice Patients Alliance noted
“While the goal of hospice workers is not to ‘fix’ families with long histories of family conflict, they must find a way to work with all members of the family to promote the best interests of the patient and that family.”
Many families have conflict without additional factors which may pose a threat to life and safety. Depending on the specific circumstances, it may be dangerous to deal directly with active drug users, people with severe mental illness, or those with a history of violence. The interdisciplinary team may need to collaborate with the police department to maintain the safety of the patient, the family, and team members. Conferencing with the organization’s leadership team may be necessary.
Another case study underscores the importance of thoughtful planning and collaboration. Recently, a 2-year-old child in foster care died of congenital anomalies. Mary, the birth mother, was recently released from prison and was actively abusing crack cocaine. She possessed a fierce hatred and resentment towards Jane, the foster mother. The hospice social worker collaborated with the state protective agency social worker and the funeral home director to create a safe place for both mothers. The wake and funeral services were held in the funeral home but were separated by hours. Jane allowed Mary to provide the child’s clothing and the child was buried with his favorite stuffed rabbit from his foster home. Mary maintained her anger but was able to grieve during the services. The funeral director had the police on stand-by in case a conflict between the two mothers erupted. Thoughtful planning, respect for the mutual love of the child, cooperation, and collaboration between professionals allowed this tragic death to have the best outcome possible.
There are times when a show of authority and a police presence during funeral services may be necessary. When Susan died, her 16-year-old son became enraged with his step-father, to the point of holding him responsible for her death. The hospice social worker, the son’s counselor, and the school personnel assisted him in managing his anger while services were being planned. Knowing that the wake and funeral—both held at the funeral home—would likely trigger the son, the principal allowed the school safety officer to attend. The son was able to control his anger and grieve for his mother while the services were completed in a calm and uninterrupted manner.
Reilly suggested, “Outline your rules at the first sign of a problem. Tell people what’s acceptable and what won’t be tolerated.” Additionally, the “threat of loss can activate dysfunctional patterns of relating (e.g., over-involvement, detachment, hostility, etc.).” The responsibilities of the hospice social worker and team members can be overwhelming, and success might feel unachievable. However, with thoughtful assessment, collaboration, limit setting, and strong communication, the patient can be afforded an opportunity to die comfortably and in peace with the family intact.
Marsden, S. J. (2018, July 18). What is the 2018 cremation rate in the US? And how is this affecting the death industry? US Funerals Online. Retrieved from http://www.us-funerals.com/funeral-articles/2018-US-Cremation-Rate.html#.XYA41yhKg_A
Hospice Patients Alliance. (n.d.). Dealing with families in conflict: hospice staff roles in protecting patient and family interests. Retrieved from https://www.hospicepatients.org/hospic78.html
Hafner, Katherine. (2018, January 25). “That’s my inheritance”: When hospice patients die, their opioid pills remain. The Virginian Pilot. Retrieved from http://pilotonline.com/news/health/article_4beeb44e-eced-56a2-9e35-505ee22fs6d9.html
Reilly, E. (2017). Top tips for dealing with family stresses in palliative care: Working with ‘family difficulties’ and ‘difficult families.’ Retrieved from http://beaumont.ie/media/20117_Eileen_Reilly1.pdf