Working With Families: The Most Important Issues

Working With Families:The Most Important Issues Larry Librach MD,CCFP,FCFP Professor & Head, Division of Palliative Care, Dept. of Family Medicine, Sun Life Financial Chair & Director Joint Centre for Bioethics, University of Toronto

Why focus on families? … • Comprehensive care requires that family concerns are understood & addressed • When confronted by the advanced nature of any disease, most families tend to become more involved • The family, along with the patient, bears an increased role or responsibility for decision-making & for care provisions

… Why focus on families? • Families also need to cope with effects of grief through the illness & dying process & will be survivors after the patient’s death • They have to adjust to the loss of a member & to restore family equilibrium once the patient has died • This is why the “unit of care” is defined as the patient & family

Factors influencing how individuals & families cope • Current medical illness • Family’s structure & roles • Stage in the patient’s life cycle • Spirituality/faith

Factors influencing how individuals & families cope • Cultural values & beliefs • Patterns of communication & relating • Socioeconomic factors/resources • Past experience with illness, disability & death • Coping history, strengths

Family structure / roles … • Families vary widely in nature & composition • families of origin, families of choice, families within families, & communities that function almost like families

… Family structure / roles • Caring for someone with a serious, terminal illness is very hard work, physically, emotionally, spiritually & practically • Keep in mind that family caregivers are at risk for illness themselves • Consider them not only valued members of the care team but also ‘second-order patients’

Stage in life cycle • Illness impacts people in dramatically different ways, depending on the stage they are at in the life cycle • Consider too what stressors are typically to be associated with this life stage & how the illness will interact with them • what other life-cycle associated stressors & strains are present e.g. a new baby, a job change, a recent loss?

Patterns of communication & relating • Degree of cohesion among family member varies widely from: • disengaged to separated, • connected or enmeshed • Cohesion makes a difference to how a patient is supported by family & to how the clinician communicates with family members

… Patterns of communicating & relating … • Nature of the communication in a family is partly driven by the individuals involved & partly by the family’s cultural context • normal levels of sharing & support can vary widely between (& within) cultures

… Patterns of communicating & relating • When relationships & norms of communication are understood, can make a better assessment of & suggestion for how to handle medical information & decision-making • boundaries of confidentiality & inclusiveness of family members are honored & are also optimal for the patient

Spirituality & faith … • Spiritual beliefs & a faith community contribute – by their presence or absence - to the individual’s & family’s coping • can bring spiritual, psychological, social & practical support • can also be a source of added distress at an already difficult time

… Spirituality & faith … • Illness can impact a patient & a family’s spiritual well-being • some find that their trust in a beneficent being is challenged • others find that faith becomes an all-important source of comfort

… Spirituality & faith • Identify how faith/spirituality will be incorporated into care plan • not usually appropriate or necessary for the doctor or nurse to be directly involved in providing that care • need clergy or chaplains who can provide expert counseling

Cultural norms, values & beliefs • Contribute to the individual’s/family’s understanding, preferences & coping patterns • meaning of the illness • response to it by the patient & the family • nature & extent of the support & from whom or where it comes

Socioeconomic factors & external resources … • Coping with serious illness always entails drawing on resources of one kind or another • Financial resources are a dominant factor in any illness experience • serious illness results in withdrawal from the work place or school for most people & for at least one member of their family at least some of the time

… Socioeconomic factors & external resources … • In addition to lost revenue or lost opportunity, the cost of medical care can be enormous • Assessment of the general level of financial resources that the family has to enable them to manage the crisis is important

… Socioeconomic factors & external resources … • Identification of barriers to accessing care is also important in order to create access or design care that does not rely on what is unavailable

… Socioeconomic factors & external resources • Common problems include: • financial strain, • low literacy level/illiteracy, • lack of insurance, • lack of transportation, • inadequate care-giving situations such as an inappropriate environment for care at home

Past experiences … • Families often have multigenerational patterns of coping • people learn by modeling how their relatives respond • culture often sustains norms of reaction & ritualized coping mechanisms • Helpful to know what resources the family accessed in the past that were perceived as helpful or not helpful

… Past experiences • Misconceptions may come into play based on past experiences as well • important to address these

Coping history, strengths • Sign of a “healthy” family is how they have coped with crises & normative life cycle stressors • How they are currently coping & how they have coped in the past can provide helpful insight into how well the opposing needs of life & illness-related stresses are balanced

Families as a System

The family mobile-Virginia Satir

Family systems The interlocking puzzle

Family Systems … • Family systems theory is not part of training of most medical professionals leaving them unprepared for the challenges of providing family-inclusive care King and Quill, 2006.

… Family Systems … • A family systems approach appreciates that medical decision making is a process in which the family plays a necessary supportive role to the patient • Recognizes the interdependence of each member of the family to maintain equilibrium in the family King and Quill, 2006.

Family Conferences • An important intervention promoting communication between the health care team & the patient & family • often under-utilized • Inherent in interdisciplinary teamwork, with the patient & family defined as the unit of care & viewed as full participants in care planning

Summary • Good quality end of life care requires working with patients and their families • A family systems approach can facilitate this process • The family conference is a key component

Working With Families: The Most Important Issues