Structure of the Family: Roles Assumed by its Members

Roles and responsibilities for tasks in the family may shift, and those related to caregiving become a greater focus of energy as a member’s illness progresses. Levine and Zuckerman have highlighted that family members may play a number of distinct roles: care providers, advocates, trusted companions, surrogate decision makers, and second-order patients (with their own distress response to the circumstances). When engaging a patient’s family, it is imperative to determine who the patient wants to have involved and share information with and who will be involved in decision making. It should never be assumed. Establishing this early on will avoid challenging situations and ensure that patient privacy is not breached later.

Assessment of the burden of caregiving responsibilities, and the degree of impact experienced by the individual, is paramount. There may be strain, as well as positive aspects, related to this role.

As any or all these roles intensify, family members may find themselves interacting in significantly different ways with the health care team than earlier in the disease continuum (i.e., seeking information as opposed to relying on the patient for it, bringing their perception of the patient’s needs to the attention of care providers). Taking on a new role may not always be an easy adjustment for family members, and hence the team needs to be aware of this and support them as needed. If they feel unsuccessful, or that the health care professionals are reacting negatively or critically to their efforts, conflict may result.

History of Loss Related to Illness (Current and Other Family Members)

Many patients and families the palliative care team meets have already met a number of other health care providers during the course of the patient’s illness. Their experiences often shape their expectations and perceptions of the health care providers who become involved in their care. They may bring with them experiences of chronic illness, dying, and death of other family members or friends, which may not have been positive. It is important to consider this as part of the family’s story because it may very much shape their approach to decision making or understanding of options and care, as well as degree of engagement with and trust in the care team.

Coping Strengths and Challenges

Palliative care providers should consider that a family must deal with crises and losses at multiple points along the illness trajectory and try to understand their history with the disease. Understanding how, as a family, they have been coping and managing the challenges they have encountered up to this point can be valuable in identifying and building on the family’s strengths.

Coping with progressing disease and increasing caregiving needs can result in intense emotional responses and new problems in the family. Family members, like patients, may be experiencing psychosocial distress, including depression and anxiety. This may affect their ability to be involved in the patient’s care at present or in future. Preexisting problems in the family, such as long-standing disagreements and fragmented communication, strained relationships, and history of abuse (substance, physical, or emotional), are often magnified and may require special attention and referral to those with appropriate expertise.

Values and Belief Systems

A family’s needs and decisions are shaped by their culture and established ways of managing problems and challenges in the family. This might include beliefs and values about the following :

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  Roles in caregiving

  
  
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  Approaches to decision making and communication with the health care team

  
  
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  Socially acceptable expression of grief in response to associated losses

  
  
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  Perceptions about accepting help from outside the family or cultural community

The team may also find that members within the same family have differing beliefs or values about specific issues.

Information Needs

Families living with life-threatening illness experience significant information and support needs. In the earlier phase of the illness, this is related primarily to understanding the disease and its effects, its treatment, and the immediate adjustments they need to make in their family life. Over time, they must adjust to additional demands in terms of time involved, type of care—from practical and emotional support to hands-on care—and psychological impact to themselves. Families often are unsure how to get help with their questions and concerns and may, as a result, be struggling with unmet needs. The information and other support needs of each family (and sometimes each family member) vary. The team may need to consider the following:

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  Family’s readiness for information or assistance

  
  
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  Amount of detailed desired

  
  
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  Amount of information they can process if emotional distressed (e.g., coping style)

  
  
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  Degree of involvement in care of the patient they are able or willing to have

Lack of needed information can negatively affect the patient’s care, as well as the physical, psychological, and social well-being of family members. As a general rule, families wish for specific kinds of information and interactions with the care team. According to Levine, these interactions should include a focus on providing the following:

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  Understandable, timely information about what to expect

  
  
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  Preparation and training for the technical and emotional aspects of their roles

  
  
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  Guidance in defining their roles and responsibilities in patient care and decision making

  
  
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  Support for setting fair limits on their sacrifices

Prompting with questions such as “What do you understand to be happening?” and “What changes you have noticed?” is useful to elicit the perception of the illness and current treatment. Asking “What is most important to you now?” or “What is most troubling to you now?” helps to engage in a discussion regarding values and goals of care, as well as specific stressors that the individual or family is facing. “How are you feeling about things?” or “How are those closest to you coping with your illness?” can be valuable to elicit perceptions of how the individual and others involved in the family are coping. Responses will help the physician and the interprofessional team to focus their interventions.

According to Rabow and colleagues, physicians should focus on five areas when relating to family members caring for patients at the end of life:

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  Promoting excellent communication with the family

  
  
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  Encouraging appropriate advanced care planning and decision making, including discussing preferences, values, and contingencies for end-of-life care, as well as preparing advanced directives and identifying a proxy for decision making

  
  
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  Supporting the patient and family to manage home care

  
  
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  Demonstrating empathy and understanding for family emotions and relationships

  
  
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  Attending to family members’ grief and bereavement

The remainder of this chapter focuses on specific strategies for establishing effective communication and a collaborative relationship with the family.