Teams, Death, and Transformation:
Supporting the Team through the Loss of a Neighbor
The culture change movement in long-term care asks participants to let go of old traditions and adopt new ones. This promises to create environments, neighborhoods if you will, where each person is known as an individual, has a voice, and can direct their own care. This change from a medical model of care to a social model of care also asks teams of staff members to develop deep, meaningful relationships with one another and the residents they care for. Transformation, or culture change, is a movement that seeks to create environments where people will want to live and work. It is vital that transformation also acknowledge the dying process, the grieving process, and the emotions that a team will feel when a neighbor dies. A team cannot be asked to develop meaningful relationships with residents and then be expected to move quickly through the process of grieving and complete the necessary task associated with the dying process.
Elisabeth Kubler-Ross, well-known researcher in death and dying, set out a fluid five stage theory of death and dying that individuals pass through as they die. Not only does the individual pass through these stages, but so do the individuals around them sharing the death experience. The stages Kubler-Ross identified are Anger, Depression, Bargaining, Denial, and Acceptance; each with its own unique milestones and each with its own challenges. Much has been written regarding the dying person and their loved ones, in this essay we will explore how the death of a resident, a neighbor, in a transformed community affects the team and their work.
As a team of staff members realizes that a neighbor is entering the dying process; they begin to seek ways in which they can support the individual and the family. These are the tasks they are most comfortable with; tasks such as pain relief, emotional support, vital signs, and bathing. Teams also realize that they are about to embark on their own journey with the individual. All too often, unfortunately, this journey starts with fear, confusion, and apprehension.
Team members will not necessarily be angry at the individual or the family, but more often at each other. Team leaders may notice a disruption in the flow of communication, team work, and the life of the community. Team members may openly express anger with one another over the way the dying person is being cared for. Perhaps saying things like, “You can’t go in there, you can’t care for him/her the way I can, just stay out!” Anger may display itself in an unwillingness to participate in the care of the individual as well. Team members may out right refuse to care for the individual and this could lead to more conflict in the neighborhood. Occasionally anger may be toward family members. Teams may judge a family member for their response to the dying person, perhaps thinking that it is not enough of a response or too much of a response. Some team members may be angry with the resident for beginning their journey of the dying process.
A team member experiencing depression might begin to call in sick more frequently. Those who work in long-term care may be familiar with the phrase, ‘you aren’t going to die on my shift.’ Team members might attempt to avoid dealing with the loss of a neighbor by calling in sick, avoiding going into the room, avoiding the family, or withdrawing from conversations about the person. Team members experiencing depression may request a change in assignment, shift, or even a different neighborhood.
Team members in denial often expect the individual to remain at the same level of care. Often team members may report to the team leader that the individual is getting lazy, or is unwilling to help themselves any longer. Team members may recommend that the individual be ordered physical therapy or restorative nursing. This is because, in their denial, they expect the resident to have the same level of care they always have had.
Team members may think that if they give the best care to this person, then they will live. Further, if they give this exceptional care to the dying person and they live, then they will bargain to give this level of care to everyone. “Bargaining” is unique in that it is often silent, and often not expressed to peers. An observant team and team leader may be able to recognize it by watching for increased overtime, individuals not taking their breaks, and individuals coming in on their days off. These may all indicate someone bargaining for the life of the resident.
Perhaps the most important stage for a team is that of acceptance. It is vital that after the person has died, that the team participate in the grieving process, alone, with one another, with the family, and with the rest of the community. Acceptance is difficult for anyone to reach after the death of a loved one, but there are new traditions in long-term care that celebrate life, value the sanctity of death, and show the team and community that life is valued. Too often in a medical model, team members are asked to develop relationships with residents, only to have their grieving process devalued as the person dies. Teams are often asked to show no emotion and complete the tasks associated with post mortem care. However, in a transformed culture, teams are asked to participate in the entire process and are supported through this by new traditions of life celebration.
Many transformed communities celebrate life in unique ways. Often it is the team that initiates how their neighborhood will celebrate the loss of a neighbor. Some acknowledge the life by bells, chimes, or an announcement. Other teams have begun the tradition of a bedside service, either as death approaches or after death, to comfort the family and each other. During these bedside services, prayers can be read, memories shared and songs sung that celebrate the individual. Still other teams offer family grieving support networks, processionals out of the building, life quilts that drape the individual instead of plastic shrouds, and memorial lamps or journals that are given to the family to celebrate their loved one’s life.
It should also be acknowledged that transformation asks team members to develop substantial relationships with each other as well. Since these relationships are expected to be meaningful, we will need to develop and discuss ways in which we celebrate the life of a team member who dies. Teams, including residents, should be afforded the opportunity to discuss and grieve together the loss of a team member. Too often team members are lost through tragic circumstances, and it is critical for the community to respond with support that can sustain the community through the grief. Many community members, including the team, may need to experience a sense of closure after the loss of a team member. Community leaders should provide the team and residents with the opportunity to attend the funeral or memorial service. It would also be important, as the community develops tradition to say good-bye to residents, that traditions are developed to say good-bye to all community members. The community may want to develop the tradition of a memorial garden, planting trees, or dedicating certain areas of the home to the individual.
It is equally important to recognize that residents may lose family members through death as well, and the team should be well prepared to assist and support the resident through the grieving process. Teams should be prepared to assist residents with making arrangements as needed; attending the funeral and connecting with support services. Team members should also be empowered to assist the resident through their grieving by encouraging them to memorialize their loved one through journaling, scrapbooks, and/or conversations.
A fundamental building block of a transformed culture is education. It is important that the team is supported through education and support that can assist them in their professional and personal development. Teams should have information on the dying process, family dynamics, emotionally supporting families through dying and grief, cultural diversity, and specific religious needs of the dying. They should learn how to identify their own emotions regarding death and dying, and identify and process their anxieties around working with the dying. In addition to education, many teams may need permission to openly participate in the grieving process and to openly share their emotions. Teams should be supported through the development of a grieving support network that is the venue for all of the education. For some, this will be challenging, and not everyone should be expected to or able to participate in the process. For those who choose not to participate, the team should continue to support then and welcome their participation when they are able.
The medical model has relegated death to another task, assigning jobs and assessments to be completed, and policies and procedures that define the process. Transformation asks us to take time to develop relationships, to grieve, and to support one another through the process. In order for transformation to be successful, the changes that it creates should be deep and systemic. These changes should reflect changes to the way our teams interact and develop in addition to the changes that enhance a resident’s quality of life and quality of care. Transformation is an inclusive movement that should seek to transform all aspects of the medical model, including the grieving process for our teams.