Working with Families in Palliative Care “Families are not fairytales whose last line is ‘and they all lived happily ever after’. They are places of conflict and stress. But they are also places where we learn to resolve them by honest communication, mutual understanding and forgiveness. The family is where we learn the grammar of emotional intelligence by not giving up when the going gets tough. It’s our ongoing seminar on the meaning of loyalty.” Rabbi Jonathan Sacks

David Oliviere Director of Education and Training St Christopher’s Hospice

The Family Dimension in palliative care 1. 2. 3. 4.

Families and palliative care Family systems and families in crisis Family communication Clinical case study

References • Kissane, D and Bloch, S (2002) Family Focused Grief Therapy. • Hudson, P and Payne, S (2009) Family Carers in Palliative Care.

1. Families and Palliative Care • We are all experts on families – we all come from families • The families we help are all different from us • We work in different cultures – adapt what is said to your own culture and context

Some fundamentals Do you agree? • Family assessment starts when a new patient is referred • All members of the team work with the family • Work with families can be throughout any part of the illness journey:pre-diagnosis,diagnosis, treatment, palliative care, terminal phase, bereavement

Some assumptions • ‘Serious medical illness has a profound impact on family life’ (Kissane, 2002) • Families have role of primary carers (Payne, 2007) • Families shape behaviours associated with the clinical course of the illness (Kissane) • Hospice and palliative care is family care • ‘Grief is a family event’ (Parkes, 2002)

Families facing life-threatening illness AREAS OF RESEARCH


Life events research - adults. Loss of parent in childhood is vulnerability factor in later incidence of depression.




Life events research - children and adolescents. Additive effect of stressful life events. Overall 3-6 fold increase in psychiatric illness.




Post-bereavement studies in children. High rates behavioural disturbance.




Post-bereavement intervention studies. Treatment group benefited from family therapy.




Studies of widows and widowers. Bereaved face worse psychologically if unprepared.

P E P S I

•Physical •Emotional •Psychological •Spiritual •Inter Personal

Calman (1993)

Model of palliative care •Every aspect has a family dimension •We work with families at every stage of the illness and bereavement

Family care is a multi-dimensional process

Affective

Behavioural ABC of Palliative care Cognitive

The family “A dynamic social system subject to change and influenced by historical, cultural and contemporary forces” (Kissane and Block, 2002) Family members are ‘second order patients’ (Rait and Lederberg, 1989) “The family – that dear octopus from whose tentacles we never quite escape” (Smith, 1938)

The family • • • • • • • • •

Nuclear Extended Family of origin Adopted Blended ‘Social’ family Friends, neighbours Work colleagues Community: gay, religious

• Your definition? • The patient’s? • “The family, in practice, is whoever its members say it is” (Kissane and Block, 2002)

Some historical, cultural, contemporary developments • • • • • • •

Gender and generational roles Economic independence Divorce increase Single, single parent, same sex households Choice, autonomy and personal satisfaction Children’s rights Dual-career partners “…indication of the resilience of the family that it can adjust, adapt and survive” Stretton, 2006

Families are places where… one has powerful experiences • • • •

Love Celebrated with joy Sexual Felt intact

• • • •

Hate Anxious Lonely Jealous

“Cancer can affect the family in much the same way as it affects the body, causing deterioration if left untreated”

(Parkes, 1975)

“Since it is to our families that we are most strongly attached, it follows that grief is a family event and that it is likely to be influenced by the particular attachments that exist within the family.” (Parkes, 2002)

Link between before and after death and family work Understanding of the grieving process is informed by: • Attachment theory • Nature of interpersonal bonds • Breaking bonds vs continuing bonds The quality of the relationship has a significant impact on the experience of grief

“Cancer can affect the family in much the same way as it affects a body, causing deterioration if left untreated” (Parkes, 1975)

Carers/Caregivers As more emphasis on home care services and most of the illness is spent at home, family carers are key Principal caregiver: 70% spouse 20% children (daughters/daughters in-law) 10% friends/distant relatives (Given and Given, 1989; Ferrell et al, 1991)

What difference does culture make? Difference….…………Commonality Cultural difference……….. • Family structure • Roles • Gender • Beliefs • Behaviours • Communication • Values

….Universal aspects • To bond • To care for offspring • To connect with and nurture another • To form loving relationships • Pain of grief

Families are ordinary people They spend a long time waiting for appointments They need social security benefits – being ill is costly; financial pain can be real Families experience discrimination, stigma, tabous

Illness affects the most intimate part of relationships – intimacy and the feeling of being loveable

They abuse

2. Family systems and families in crisis • The family, including the patient, should be the unit of care • Support with grief begins before the death • Direct relationship between adaptive family functioning during illness and subsequent grief outcome for individual members

The whole is greater than the sum of its parts?

A systems approach to understanding and intervening with families

Think - family dynamics interconnectedness, interaction, interdependence

Connectedness Move away from seeing the problems located in just an individual or in wider society See the whole context – the wider picture

Pattern – don’t see the bits but the whole A series of interlocking parts: a jigsaw

Matisse – La danse A set of relationships that act and interact Balance, equilibrium, homeostasis Families are often talked about in terms of systems where one part is dependent on another part to work and for the whole to operate smoothly In everyday life, families have to keep comfortably afloat and keep sailing along

Most cope with generally harmonious relationships They surmount day to day problems Each member knows his or her role and job and relies upon each other to work as an integrated team

• But for these families, their ‘pattern’ or ‘system’ will work for them most of the time. • It is the development of unwritten rules and ways of behaving that allow the family to function well • Offering the family unit stability and predictability • Ensuring the family’s comfortable survival • The family has a life of its own • And there are no two families alike…..

Families adopt all sorts of systems of coping with

crises, loss and separation The crisis of death is the ultimate threat to the family unit What happens to the system when one of its members is going to die?

The family is thrown into a psychological crisis! Into a situation in which it has never previously coped How does the system survive in this new situation?

Crisis ‘an upset in a steady state’ (Caplan) • The family itself will never settle down in the same pattern again • “Every crisis represents a novel situation in which novel forces, both internal and external, are involved” (Caplan, 1965) • Crisis = potential for change • Crisis = opportunity

Lessons learned from working with families The past is resurrected in the present

Illness, dying and death does not automatically resolve differences in families

Systemic thinking Inter-action Inter-connectedness Inter-personal Inter-related Inter-dependence Pattern Equilibrium Homeostasis Balance

Systems thinking • • • • • • •

Don’t see the bits; see the whole Whole is greater than the sum of its parts A set of relationships that act,react, interact A series of interlocking parts A jigsaw It takes 2 to tango The teacher needs the students; the students need the teacher

Systemic approach to families • Move away from seeing problems located in just the individual or just wider society • See the whole context – the wider picture • Need to become ‘empathically attuned’ to several people in the room • Movement in 1 part, has a corresponding effect on another – see-saw effect

Families ‘interrelated, interdependent, interacting complex organisms, constantly influencing and being influenced by their environment’ (Kirshling in Sheldon, 1998)

Tools of our trade in working with families - means • Family meetings • Genograms/family trees/relationship trees • Ecomaps • Multi-professional team support • Supervision/consultation

What can the professional offer? • To provide information and re-assurance • To help family identify its needs and priorities • To help family acknowledge, express and share the pain it is feeling

What can the professional offer? • To help family recognise that they can be problem solvers • Help facilitate discussions • To help family identify its strengths and internal resources and support them as they draw on these resources • To help family identify external resources for support – networks and communities and professional systems

Family Focused Grief Therapy Kissane, DW and Block, S (2002) Facing Death Series •Based on scientific research study •Meticulously researched •Confirms much of what practice demonstrates •Major, exciting work of the century! •Kissane research shown that family functioning has a striking impact on bereavement outcome

Strong association between family type and psychosocial morbidity e.g. • Most intense grief • Greatest risk of depression • Psychological distress • Reduced social adjustment • Cohesion jeopardized • Distress reverberates through family

3 key determinants of family functioning • Cohesiveness Family’s ability to function as a team • Conflict Family’s ability to resolve conflict • Communication (expressiveness) Communication of thought and feeling

Family Focused Grief Therapy • Adaptive family coping …………………………..growth/creativity • Maladaptive grieving …….….morbidity

3.

Family Communication

Using a series of images based on fish, to help us consider what can happen to family communication patterns at end of life

The patient becomes pre-occupied The patient becomes detached – out of his/her element. “Why doesn’t anyone talk to me?”

The patient becomes isolated. The family system changes

Questions

“Don’t tell him, it’ll kill him!” Protection The patient senses what is going on but receives double messages

Professional seduction We need to facilitate communication within the family. These are just some of the ‘games’ that are played out

4.

A Clinical Case Study

D: “What do you think it might be like when Dad dies?” Children: “Mum will commit suicide” Cohesiveness? Conflict? Communication? What would you do next?

Question How do we survive working with families?

“We create systems which invite families to share their pain – who in these systems support those who absorb that pain? (Klagsbrum)

In the multi-professional team, you need to work closely together and communicate; otherwise families divide you