The Continuum of Care at Time of Death

Care management between settings has long been encouraged as a means of guaranteeing quality and comprehensive care for patients and families. Traditionally, this has been thought of as existing between care providers involving a patient. However, the hospice definition of care includes the patient AND family, and thus the continuum of care should also include the death event, as this can impact a family’s satisfaction with care and their coping with bereavement. To ensure a seamless transition of care at the time of death, adequate information sharing between the hospice provider and the funeral provider is essential.

Hospice providers and funeral providers share similar values—both are invested in providing high quality services to serve the needs of bereaved families. In guiding the patient and family through the end-of-life journey, hospice providers are attuned to the physical, psychosocial, spiritual, and environmental challenges experienced by the patient/family unit. Hospice providers often develop a special rapport with their patients and families and serve as their advocates in optimizing quality of life. Their knowledge of the patient/family’s circumstances and their advocacy skills can be important functions during the death event. Likewise, funeral providers are also earnest in their desire to provide a respectful and dignified death experience for the family. Yet, they often arrive to the death visit with little to no contextual information about the patient/family’s circumstances. With the growth of the hospice industry comes the increased complexity of the body retrieval process for funeral providers. Many hospice patients die in their private homes. For the funeral provider, pick up the deceased from a hospital morgue is qualitatively different from retrieving the patient’s body from a private residence. A little forethought and good communication can make a big difference in the outcome. The following are some examples of potential circumstances which could arise or be present during a death visit. These examples demonstrate the importance of information sharing between the hospice provider and the funeral provider to facilitate a smooth transition during the death event. 

The Bariatric Patient: Most funeral providers send two people with standard equipment to pick up the patient’s body. The body removal of a bariatric patient may require a larger body bag, gurney, or additional personnel. Informing the funeral provider prior to or during the death event can make the body removal process function more smoothly.

The Physical Environment: Most often, the funeral providers have never been in the patient’s home environment before. They should be made aware of special circumstances in the home, such as many stairs, spiral staircases, or other physical barriers which may present challenges to the body retrieval process. Situations where compulsive hoarding has occurred can also create physical challenges in the home environment. Alerting the funeral providers of these circumstances can help them to navigate the home environment more effectively.

Family Dynamics: Grief reactions during the time of death can be intense and are often influenced by family history (e.g., presence of conflict among family members), cultural considerations, mental health or substance abuse concerns, or the presence of complicated grief. Hospice providers may find themselves having to manage these dynamics while pronouncing the death and cleaning the patient’s body. When the funeral provider is contacted to remove the patient’s body, pertinent information about the family’s dynamics at the death visit should be relayed so that the funeral providers may be prepared for these dynamics when they arrive. The presence of hospice personnel to assist with body removal may be necessary to calm or mediate with family members who are struggling with the patient’s death.

Families of Choice: Because of their marginalization, many LGBT patients or bereaved have developed non-traditional family structures which often remain unacknowledged by mainstream society. These family members of choice may not be biologically or legally related to the patient (or bereaved) but are integral members of the individual’s social support system. Family members of choice may include, but are not limited to: same sex partner, former partner, neighbor, friend, etc. When contacting the funeral home to remove the body during the death visit, relaying this information to the funeral provider can be helpful so that these relationships can be acknowledged, and cultural sensitivity can be demonstrated during the body removal process. Such simple cues as, “Her life partner, Mary, is at the bedside now and will be here when you arrive” can make a difference in helping a funeral provider validate a bereaved family member’s relationship to the deceased.   

Pets: The presence of animals or pets in the home may also present a challenge or safety risk. Informing funeral providers of pets in the home during the death visit can help funeral providers to navigate the situation more effectively when they arrive to remove the body.

Cultural and Spiritual Considerations: Funeral providers should be made aware of any culturally or spiritually based values and beliefs held by the patient/family related to the death event or death rituals which should be respected. For example, placing religious objects with body, the family washing the patient’s body at the death event, the deceased body facing Mecca, the handling of the body wearing gloves, the presence of a spiritual or religious leader, the removal of the body in something other than a body bag, etc. Being aware of cultural and spiritual considerations can facilitate a respectful death event.

Though not an exhaustive list, the above scenarios exemplify the necessity of strong communication between hospice and funeral providers. By using a little forethought and working together, we can create a continuum of care which is respectful of the patient’s preferences and the family’s needs and facilitate a smooth transition into the bereavement journey.