Be aware of family limitations

Culture, depth of loss must be understood

By Robin McMahon, LCSW, BCD
Senior Advisor for Grief and Loss
The Hospices of the National Capital Region
Fairfax, VA

(Editor’s note: This is the final installment of a series on understanding the family dynamic and addressing its challenges. Last month, columnist Robin McMahon focused on defining a family at end of life.)

The term "cultural diversity" is often narrowly viewed as religion, socioeconomic status, and/or ethnicity. Indeed, these characteristics of the family will affect how members relate to one another and "outsiders" such as health care workers. However, other factors such as communication styles, the hierarchy of the family, and customs and beliefs about caregiving, dying, and death are equally important components of each family’s unique culture.

Whether biology, intimacy, or both are requisite for family membership, families are generally multigenerational as well. This added wrinkle of age and corresponding history adds further complexity to a family’s relationships, attitudes, and communication.

One family, two branches

Mary’s family typifies both the complexities and the richness of working with a multigenerational, two-family culture. Mary was 37 years old when she was diagnosed with a brain tumor. By the time she became a hospice patient six months later, she had profound memory loss and difficulty with balance. In other words, she needed 24-hour supervision and care. The family consisted of her spouse, Jed, and their two adolescent children, as well as the couples’ respective parents and siblings.

Mary’s parents and siblings had lived in the same small town all their lives. Jed’s parents were missionaries who had traveled all over the world. Mary and Jed’s home was at least a four-hour drive away from the nearest relative. Over the next two years, in spite of the differing backgrounds and beliefs of the two families and their extended families, Mary lived at home until her last six weeks of life.

Mary’s family of origin practiced great closeness and openness in communication. Her parents’ mission in life when she became ill was to make any adjustments needed to help care for their child. Jed’s parents, on the other hand, were stoic and practical. In their minds, keeping Mary at home was a burden beyond what Jed and the children should bear. Jed’s grandmothers had lived out their days in a nursing home, and that solution suited Jed’s parents the best.

Part of the hospice social worker’s role with this family was to listen to each branch of the family and affirm each person’s perspective on the situation. As Jed’s and Mary’s families rotated through their caregiving stints, the social worker also helped Jed process the various messages he was receiving from both sides. The nurse and certified nursing assistant on the team worked with differing caregiving styles and affirmed the quality of care that each provided while helping to establish consistency from caregiver to caregiver. The chaplain who was "not needed" when Jed’s parents were in residence was a supportive presence, especially with the spiritual questions of parents who would survive their child.

A tome could be written about this challenging yet loyal family. Suffice it to say that the hospice team’s most effective intervention was the effort to meet each individual where he or she was and to respect their diverse opinions on how to cope with the situation. Helping Jed to respect all points of view was the key to his handling of this family ordeal.

Resources and limitations

Addressing the resources and limitations of a family that has a dying member involves recognizing the strengths and weaknesses of individuals and of the collective family unit. When considering the resources and limitations of a family, the following questions should be considered:

  • What are the family members’ previous experiences with caregiving, death, and illness?
  • How much diversity exists in perspectives and beliefs about death and dying?
  • Is there consistency among family members about communicating difficult subjects, or is the family divided in subgroups that either communicate or practice stoicism?
  • What are the financial resources or time factors that allow even distribution of care responsibilities — or that place the burden on a select few?
  • What other life issues and crises are occurring for the various family members?

Rather than simply deciding what the problems and resources of the family may be, it is essential that the hospice team begin communication with individual family members about what they perceive to be their assets and challenges in coping with the situation.

Lack of money may be a problem in one family, while inexperience in caregiving may be a source of apprehension in another. Hospice team members can overcome deficits by helping family members identify these challenges and creatively explore resources within the parameter of hospice services, the larger community, and their own support networks. Hospice staff and volunteers also can remind family members of strengths they possess and model for them ways to affirm the other members of the family. For a complex family with differing opinions and resources, a family meeting facilitated by hospice staff can reinforce the family’s common ground — love and concern for the patient — while defusing some of the areas of conflict.

Nature and meaning of loss of a loved one

The nature and meaning of the loss are important for hospice staff to recognize. Each family member’s caregiving role and reaction to a dying loved one will be unique based on the life cycle of the family, what other losses are occurring as a result of this death, the course of the patient’s illness, and the roles both the patient and the various family members have held in the family. Questions relevant to the nature and meaning of the loss include:

  • Who is the dying person, and what roles does that person fulfill for the collective family and in relation to each of the members?
  • Is this a matriarch who is dying in old age and who was still the glue that held the family together, or is it a young child whose death forces individuals to question their faith, confront their mortality, and wonder why not them?
  • Are there dependents that relied on the dying individual for care, financial support, or a home? Does the death of a loved one leave them wondering who will care for them now?
  • Is the dying process witnessed by the family one that is frightening or overwhelming because of the care involved or unfamiliarity with illness and death?
  • Will the patient die at home, or is a home death unacceptable for some reason? And what will the consequences be after the death in terms of the bereavement experienced by those who survive?

Engage individuals in discussion about death

It is beneficial for the members of the hospice team to try to engage each family member in a discussion of what this impending death means to them. A simple question such as "What is this like for you?" allows individuals to describe how they are being affected by verbalizing what is most difficult, frightening, frustrating, or surprising for them. Often, the professional outside the family is the safest person in whom to confide these thoughts and feelings.

Each hospice clinician possesses discipline-specific expertise to provide support as individuals struggle to find solutions for practical problems such as housing or finances, deal with role stresses such as hands-on care questions, and find spiritual and emotional comfort for their grief. Awareness of all of the permutations of family dynamics in end-of-life care would be the ideal for expert hospice nurses, social workers, nursing assistants, chaplains, and volunteers.

This article has mentioned only a fraction of the family factors that affect how those concerned cope with a dying loved one. Even the most seasoned hospice clinician will not have been exposed to every possible family dynamic.

A more realistic and beneficial expertise, then, is the ability to respect each individual as unique and to recognize the diversity of perspectives within a given familial unit. The art of the hospice practitioner is ease in demonstrating hospice’s philosophy of caring for all who are affected by the approaching death so a wounded family member does not perceive that "hospice" is taking sides when individuals clash. Qualities of compassion, dedication, and respect that draw nurses, social workers, nursing assistants, chaplains, volunteers, and other front-line staff to hospice also enable them to make a difference in working with even the most complicated families.