Defining the family at the end of life
By Robin McMahon,
LCSW, BCD
Senior Advisor for Grief
and Loss
The Hospices of the National
Capital Region
Fairfax, VA
Unlike other specialties in health care, family members as well as the patient are considered clients for the hospice team. Therefore, the specialized services available from hospice clinicians and volunteers are intended to address the physical, spiritual, social, cognitive, and emotional needs of the entire family system. Yet, understanding the family dynamic and how it should influence care can be a challenge, two of the greatest being:
- defining who constitutes family;
- managing the sometimes competing needs and contradictory beliefs of the unique individuals who are included in the "family" definition.
Because entire books have been written on the topic of family dynamics during life crises, this article will be limited to an overview of some of the influences on family interactions at the end of life and how hospice staff should incorporate this knowledge in the care of their clients. These issues include the previously cited delineation of who is ascribed family status; the culture of the family; the resources and limitations of each individual in coping with a dying loved one; and the meaning of the anticipated loss for the survivors.
In an age of blended families, same-sex parents, and vast geographic distances separating members of the family of origin, the definition of what constitutes the family or who is considered a member is unique to each patient and family encountered by the hospice team. The family that provides care may not be the same family that sits in the front pew at the funeral service or inherits the deceased’s estate. Family is sometimes not conditional on biological or marital connection.
Lack of a consistent designation of who is "family" can create discord when blood relatives of a patient are supplanted in family status by faith community intimates, hired caregivers, or 12-step support group members. Conversely, same-sex partners who consider themselves spouses but lack legal acknowledgement may be cast aside or in conflict with "next of kin," particularly when the dying person is no longer competent to make decisions or physically or emotionally able to voice personal preferences.
One example of a nontraditional family from this writer’s experience in hospice concerned working with the support network of a male patient that included his current wife as well as two of his three ex-wives as caregivers. This was an amazing group of loving individuals who collectively constituted this man’s family despite the fact that one phase of their relationships with him had ended.
His current wife was remarkable in her ability to share her husband with other women who had been important in his life. The greatest challenge for the hospice team in working with this patient was remaining open-minded at the outset about the viability of such an arrangement. It was important for the nurse, social worker, chaplain, and home health aide to suspend any preconceived notions about the "dysfunctionality" of this dynamic. A decade later, I still fondly remember this family and the learning experience they gave me on the power of unconditional love.
A distant brother draws closer
Another family dynamics lesson was on the value of including ostensibly peripheral family members, despite a patient’s skepticism about their commitment to him. A patient who I’ll call Jim had end-stage lymphoma and AIDS. His support network consisted of caring friends he had encountered through various local AIDS ministry and services programs. His partner had died several years previously, and Jim had a distant relationship with his family of origin. Jim had not spoken to two of his three siblings for several years, and their parents were deceased. His youngest brother, who had young children and a full-time job, called occasionally, but had not been present through Jim’s hospitalizations and low periods.
When I met Jim to do his psychosocial assessment, he described his support network and his family relationships. A typical question when there are no caregivers present at an initial visit with a patient is, "With whom shall I follow up after this visit?" It is important when working with multiple persons connected to the same patient to secure the patient’s permission regarding who can be contacted and the parameters of disclosure of any information provided by the patient.
In this situation, I wanted to know if Jim’s biological family could be apprised of his status as a hospice patient and if I should consider his brother one of my clients. Jim’s half-hearted assent and reluctant provision of his brother’s telephone number belied the importance that this relationship would signify for both men by the time of Jim’s death four months later.
Despite the responsibilities towards his own young family and full-time job, Jim’s brother became an important piece in the patchwork of "family" who ensured that Jim was never alone during his last months of life.
At the conclusion of a beautiful memorial service for Jim, I decided to share part of one of our last conversations with his brother. I knew Jim would have wanted his brother to know that the closeness they experienced in those last months, in Jim’s mind, more than made up for the years of distance. His connection to his younger brother had also opened the door for his two other brothers to become closer, too.
(Next month: How hospice workers should take into account the family culture and factors that affect family members’ ability to cope with death and understand the breadth of the dying process.)
Unlike other specialties in health care, family members as well as the patient are considered clients for the hospice team. Therefore, the specialized services available from hospice clinicians and volunteers are intended to address the physical, spiritual, social, cognitive, and emotional needs of the entire family system. Yet, understanding the family dynamic and how it should influence care can be a challenge.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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