Working With Families: The Most Important Issues Larry Librach MD,CCFP,FCFP Professor & Head,...

Working With Families:Working With Families:The Most Important The Most Important IssuesIssuesLarry Librach MD,CCFP,FCFPLarry Librach MD,CCFP,FCFP

Professor & Head, Division of Palliative Professor & Head, Division of Palliative Care, Dept. of Family Medicine, Care, Dept. of Family Medicine, Sun Life Financial Chair & Director Joint Sun Life Financial Chair & Director Joint Centre for Bioethics, University of Centre for Bioethics, University of TorontoToronto

Temmy Latner CentreTemmy Latner Centre 22

Why focus on families? Why focus on families? … …

• Comprehensive care requires Comprehensive care requires that family concerns are that family concerns are understood & addressedunderstood & addressed

• When confronted by the When confronted by the advanced nature of any disease, advanced nature of any disease, most families tend to become most families tend to become more involvedmore involved

• The family, along with the The family, along with the patient, bears an increased role patient, bears an increased role or responsibility for decision-or responsibility for decision-making & for care provisionsmaking & for care provisions


… … Why focus on Why focus on families?families?

• Families also need to cope with Families also need to cope with effects of grief through the illness effects of grief through the illness & dying process & will be & dying process & will be survivors after the patient’s deathsurvivors after the patient’s death

• They have to adjust to the loss of They have to adjust to the loss of a member & to restore family a member & to restore family equilibrium once the patient has equilibrium once the patient has dieddied

• This is why the “unit of care” is This is why the “unit of care” is defined as the patient & familydefined as the patient & family


Factors influencing how Factors influencing how individuals & families copeindividuals & families cope

• Current medical illnessCurrent medical illness• FamilyFamily’’s structure & roless structure & roles• Stage in the patientStage in the patient’’s life cycles life cycle• Spirituality/faithSpirituality/faith


Factors influencing how Factors influencing how individuals & families copeindividuals & families cope

• Cultural values & beliefsCultural values & beliefs• Patterns of communication & Patterns of communication &

relatingrelating• Socioeconomic Socioeconomic

factors/resourcesfactors/resources• Past experience with illness, Past experience with illness,

disability & deathdisability & death• Coping history, strengthsCoping history, strengths


Family structure / roles Family structure / roles ……

• Families vary widely in nature Families vary widely in nature & composition & composition families of origin, families of families of origin, families of

choice, families within choice, families within families, & communities that families, & communities that function almost like familiesfunction almost like families


… … Family structure / Family structure / rolesroles

• Caring for someone with a serious, Caring for someone with a serious, terminal illness is very hard work, terminal illness is very hard work, physically, emotionally, spiritually physically, emotionally, spiritually & practically& practically

• Keep in mind that family caregivers Keep in mind that family caregivers are at risk for illness themselvesare at risk for illness themselvesConsider them not only valued Consider them not only valued

members of the care team but members of the care team but also also ‘‘second-order patientssecond-order patients’’


Stage in life cycleStage in life cycle• Illness impacts people in dramatically Illness impacts people in dramatically

different ways, depending on the different ways, depending on the stage they are at in the life cyclestage they are at in the life cycle

• Consider too what stressors are Consider too what stressors are typically to be associated with this typically to be associated with this life stage & how the illness will life stage & how the illness will interact with theminteract with themwhat other life-cycle associated what other life-cycle associated

stressors & strains are present e.g. stressors & strains are present e.g. a new baby, a job change, a recent a new baby, a job change, a recent loss?loss?


Patterns of communication Patterns of communication & relating& relating

• Degree of cohesion among family Degree of cohesion among family member varies widely from:member varies widely from:disengaged to separated, disengaged to separated, connected or enmeshedconnected or enmeshed

• Cohesion makes a difference to Cohesion makes a difference to how a patient is supported by how a patient is supported by family & to how the clinician family & to how the clinician communicates with family communicates with family membersmembers


… … Patterns of Patterns of communicating & relating communicating & relating

… … • Nature of the communication in Nature of the communication in

a family is partly driven by the a family is partly driven by the individuals involved & partly by individuals involved & partly by the familythe family’’s cultural contexts cultural contextnormal levels of sharing & normal levels of sharing &

support can vary widely support can vary widely between (& within) cultures between (& within) cultures


… … Patterns of Patterns of communicating & relatingcommunicating & relating

• When relationships & norms of When relationships & norms of communication are understood, communication are understood, can make a better assessment of can make a better assessment of & suggestion for how to handle & suggestion for how to handle medical information & decision-medical information & decision-makingmakingboundaries of confidentiality & boundaries of confidentiality &

inclusiveness of family inclusiveness of family members are honored & are members are honored & are also optimal for the patientalso optimal for the patient


Spirituality & faith …Spirituality & faith …

• Spiritual beliefs & a faith Spiritual beliefs & a faith community contribute – by their community contribute – by their presence or absence - to the presence or absence - to the individualindividual’’s & familys & family’’s copings copingcan bring spiritual, psychological, can bring spiritual, psychological,

social & practical supportsocial & practical supportcan also be a source of added can also be a source of added

distress at an already difficult distress at an already difficult timetime


… … Spirituality & faith …Spirituality & faith …

• Illness can impact a patient & a Illness can impact a patient & a familyfamily’’s spiritual well-beings spiritual well-beingsome find that their trust in a some find that their trust in a

beneficent being is challengedbeneficent being is challengedothers find that faith becomes others find that faith becomes

an all-important source of an all-important source of comfortcomfort


… … Spirituality & faithSpirituality & faith

• Identify how faith/spirituality will Identify how faith/spirituality will be incorporated into care planbe incorporated into care plannot usually appropriate or not usually appropriate or

necessary for the doctor or necessary for the doctor or nurse to be directly involved in nurse to be directly involved in providing that careproviding that care

need clergy or chaplains who need clergy or chaplains who can provide expert counselingcan provide expert counseling


Cultural norms, values Cultural norms, values & beliefs& beliefs

• Contribute to the Contribute to the individualindividual’’s/familys/family’’s understanding, s understanding, preferences & coping patternspreferences & coping patternsmeaning of the illnessmeaning of the illnessresponse to it by the patient & response to it by the patient &

the familythe familynature & extent of the support & nature & extent of the support &

from whom or where it comesfrom whom or where it comes


Socioeconomic factors & Socioeconomic factors & external resources …external resources …

• Coping with serious illness always Coping with serious illness always entails drawing on resources of one entails drawing on resources of one kind or another kind or another

• Financial resources are a dominant Financial resources are a dominant factor in any illness experiencefactor in any illness experienceserious illness results in withdrawal serious illness results in withdrawal

from the work place or school for most from the work place or school for most people & for at least one member of people & for at least one member of their family at least some of the timetheir family at least some of the time


… … Socioeconomic factors & Socioeconomic factors & external resources …external resources …

• In addition to lost revenue or In addition to lost revenue or lost opportunity, the cost of lost opportunity, the cost of medical care can be enormousmedical care can be enormousAssessment of the general Assessment of the general

level of financial resources that level of financial resources that the family has to enable them the family has to enable them to manage the crisis is to manage the crisis is importantimportant


… … Socioeconomic factors & Socioeconomic factors & external resources …external resources …

• Identification of barriers to Identification of barriers to accessing care is also important accessing care is also important in order to create access or in order to create access or design care that does not rely on design care that does not rely on what is unavailablewhat is unavailable


… … Socioeconomic factors & Socioeconomic factors & external resourcesexternal resources

• Common problems include:Common problems include:financial strain, financial strain, low literacy level/illiteracy, low literacy level/illiteracy, lack of insurance, lack of insurance, lack of transportation,lack of transportation,inadequate care-giving situations inadequate care-giving situations

such as an inappropriate such as an inappropriate environment for care at homeenvironment for care at home


Past experiences …Past experiences …• Families often have Families often have

multigenerational patterns of copingmultigenerational patterns of copingpeople learn by modeling how their people learn by modeling how their

relatives respondrelatives respondculture often sustains norms of reaction culture often sustains norms of reaction

& ritualized coping mechanisms& ritualized coping mechanisms

• Helpful to know what resources the Helpful to know what resources the family accessed in the past that family accessed in the past that were perceived as helpful or not were perceived as helpful or not helpfulhelpful


… … Past experiencesPast experiences

• Misconceptions may come into Misconceptions may come into play based on past experiences play based on past experiences as wellas wellimportant to address theseimportant to address these


Coping history, strengthsCoping history, strengths

• Sign of a Sign of a ““healthyhealthy”” family is how family is how they have coped with crises & they have coped with crises & normative life cycle stressorsnormative life cycle stressors

• How they are currently coping & How they are currently coping & how they have coped in the past how they have coped in the past can provide helpful insight into can provide helpful insight into how well the opposing needs of how well the opposing needs of life & illness-related stresses are life & illness-related stresses are balancedbalanced


Families as a SystemFamilies as a System


The family mobile-The family mobile-Virginia SatirVirginia Satir


Family systemsFamily systems

The interlocking puzzle


Family Systems …Family Systems …• Family systems theory is not Family systems theory is not

part of training of most medical part of training of most medical professionals leaving them professionals leaving them unprepared for the challenges of unprepared for the challenges of providing family-inclusive careproviding family-inclusive care

King and Quill, 2006King and Quill, 2006. .


… … Family Systems …Family Systems …

• A family systems approach A family systems approach appreciates that medical decision appreciates that medical decision making is a process in which the making is a process in which the family plays a necessary family plays a necessary supportive role to the patientsupportive role to the patient

• Recognizes the interdependence of Recognizes the interdependence of each member of the family to each member of the family to maintain equilibrium in the familymaintain equilibrium in the family

King and Quill, 2006King and Quill, 2006. .


Family ConferencesFamily Conferences• An important intervention An important intervention

promoting communication between promoting communication between the health care team & the patient the health care team & the patient & family& familyoften under-utilizedoften under-utilized

• Inherent in interdisciplinary Inherent in interdisciplinary teamwork, with the patient & family teamwork, with the patient & family defined as the unit of care & viewed defined as the unit of care & viewed as full participants in care planningas full participants in care planning


SummarySummary

• Good quality end of life care Good quality end of life care requires working with patients requires working with patients and their familiesand their families

• A family systems approach can A family systems approach can facilitate this processfacilitate this process

• The family conference is a key The family conference is a key componentcomponent

Working With Families: The Most Important Issues Larry Librach MD,CCFP,FCFP Professor & Head,...

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