importance of family-centred care to palliative medicine

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Jpn J Clin Oncol1999;29 8)371-373

Importance of Family-Centred Care to Palliative Medicine

David W Kissane*, Centre rPalliative Care St Vincent s Hospital and Peter MacCallum Cancer Institute),

University Melbourne, Australia

The family is inevitably involved in care-provision when one of

its number suffers from a progressive and life-threatening illness

such as advanced cancer. Distress reverberates throughout the

family, with moderate rates of psycho-social morbidity, including

up to one third of partners and one quarter of adult children 1-3 .

There has been growing awareness over recent years of the

importance of a family-centred model of care to fully meet the

needs of patients and families involved with palliative care

services and, moreover, maintain continuity of support into

bereavement (4).

To achieve this, we need both conceptual and pragmatic

methods of classifying families to guide our efforts at interven

tion. Historically, one approach has been to conceptualize

families in terms of the phase of illness they must negotiate (5);

another stressed the family s needs or the associated burdens it

experienced (6); a third focused on the family s developmental

stage (7). Yet none of these approaches proved predictive of

psycho-social outcome overtime. Itwas notuntil attention turned

to family functioning that a clinically useful methodof predicting

psychosocial outcome emerged (8,9).

Through these longitudinal studies of families during palliative

care and bereavement, we were able to classify families using thefollowing dimensions of their functioning: i cohesiveness, the

family s sense of togetherness; (ii) expressiveness, their sharing

of both thoughts and feelings; and (iii) conflict resolution. These

dimensions form a simple screening instrument, the 12 item

Family Relationships Index (10).

USE OF FAMILY FUNCTIONING AS A CLINICAL

APPROACH

Using these dimensions of family functioning, we have been able

to define 5 classes of adult families when one parent suffers from

terminal cancer (8,9). Two classes appear well functioning: one

third were named supportive, characterised by high levels of

cohesiveness, and one fifth conflict resolvers, in whom effective

communication provided the wherewithal to tolerate difference

of opinion and resolve conflict constructively.

*The author was invited to the National Cancer Center Research n s t t u t ~East for the joint research program, and his visit was supported by the 2nd

Term Comprehensive IO-year Strategy for Cancer Control of the Ministry

of Health and Welfare, Japan.

In contrast, two classes of families were clearly dysfunctional:

hostile families (6 ) were distinguished by low levels of

cohesiveness, expressiveness and much conflict, while sullen

families (9 ) hadmore muted levels of anger andalso carried the

highest rates of clinical depression among members. The final

class of family was termed intermediate (one third in number)

because its characteristics lay somewhere between the well

functioning and dysfunctional families, yet considerable morbid

ity still occurred for its members. Furthermore, intermediate

families tended to become more dysfunctional under the stress of

bereavement (9).

SCREENING PERMITS RECOGNITION

FAMILIES AT GREATER RISK

would be labour intensive, costly and unnecessarily intrusive to

seek to intervene with all families. We should have confidence

that well functioning families are able to effectively support their

membership and cope adaptively with the grief of bereavement.

However, a preventive model of care that enhanced functioning

in families at risk of maladaptive outcome would do much to

reduce psycho-social morbidity in the community. Screeningfamilies to define their functioning would enable such a model of

palliative care.

Families could then be invited to meet as a family group to

discuss careof theirill relative andconsiderhowwemight further

help them. This model is a focused brief intervention, whose

primary goal is to enhance family functioning, with the aim of

reducing psycho-social morbidity both during palliative care and

across the later phase of bereavement (11). The dimensions of

family functioning that are targeted include promotion of

cohesiveness, reduction of conflict and encouragement to share

thoughts and feelings with each other. Integral to this process is

the sharing together of family grief, while the family s strengths

and successful ways of coping together are affirmed.

Attendance at a family meeting is open to all interested,

including the dying patient. However, if a family member chose

not to attend, one should respect their wishes, having confidence

in the principle that change in one part of a system will inevitably

influence other aspects of the system.

The model is a flexible one that seeks to engage families during

palliative care and continue the support during early bereave

ment, once the cancer patient has died. Initially, two weekly

sessions are conducted as part of an assessment process. Then

with more focused treatment, sessions tend to occurfortnightly to

monthly, dependent upon the issues at hand. Generally some 4 to

© 1999 Foundation for Promotion of Cancer Research



372 Editorial

6 focused treatment sessions occur, before moving to less

frequent consolidation sessions, occurring 2 to 3 months later,

before therapy is terminated.

A number o common themes arise during this family work:

conce rn about death and the dying process; any unfinished

business which may be present; the process o saying goodbye;

the material or instrumental care provision tasks that are there for

the family; any question o suffering; the existential issue o

uncertainty; intimacy and closeness; the role o culture and

religion; the needs o yo un ger children; past losses; and

eventually, whether the death proved peaceful, or one which

brought disappointment. Eventually the family moves to the

dominant issues of grief and loss.

As the family progresses to the point o termination, review o

the wo rk that the family has d one is appropriate. Success is

affirmed, but the family is reminded that old patterns will occur,

and that they need to continue their efforts to pull together more

closely, communicat e well and avoid conflict. The therapist

endeavours to look to their future with confidence and wishes

them the very best in concluding this therapy.

TRUTH TELLING OUT C NCER ND THE

F MILY

Despite the recommendations o the Japanese Ministry o Health

and Welfare t ask force on the t erminally ill in 1989 12), full

disclosure o th diagnosis has progressed slowly 13). However,

suspicion about the diagnosis had been present in over halfthose

not informed. Our experience o family meetings is that they

empowerfrank and easy discussiono the predicamentas anxious

relatives discover that their parent can courageously accept the

truth. Clinicians can readily clarify family ideas by asking directlyabout their expectations and fears 14). Family meetings model

direct and open communication about cancer and palliative care

and bring considerable re lie f a nd peace o mind to family

members.

CH LLENGES IN WORKINGWITH C NCER

F MILIES

Some particular challenges occur in doing this work. Oneo these

is the engagement o families who are especially avoidant. The

hostile type o family proves the hardest to bring together. This,

i it ca n occur, needs to b e on neutral territory, such as i n the

doctor s office. However, for better functioning families, particu

larly intermediate families, as the illness progresses, the need is

often there for family meetings to occur in the home.

The doctor or therapist needs to establish clear guidelines for

the safe conduct o family sessions within the home, clarifying

seating, time, processes and ensuring that the family won t be

interrupted by visitors or the telephone. Sometimes i the dying

patient is too ill, the family may move from the bedside back into

a family room, separate from the patient.

It is always important in this therapy that achievable goals are

targeted, sometimes modest ones for poorly functioning families,

as the work is, o necessity, time-limited. Nonetheless, consider-

able benefits can still flow from the open communication that is

involved.

THE NEED FOR GRE TER SSESSMENT OF

ERE VEMENT RISK

Parkes provided a commendable model o bereavement care

through the support he gave St Christopher s Hospice in London 15). He highlighted the opp01wnity that palliative care services

have to identify those family members at increased risk o poor

bereavement outcome, and thus intervene preventively. When

ever there is a perception that death has been untimely or in some

way shocking in its nature, the relationship with the deceased

either ambivalent or overly dependent, the bereaved psychiatri

cally vulnerable because o a past history o such disorder, the

family dysfunctional leaving the carerisolated or unsupported, or

a cumulative build up o stressful loss events has occurred, then

the palliative care team should maintain supportive followup.

Early referral is recommended i concern develops. Ongoing

family work with those recognized to be at increasedrisk provides

a useful model to accomplish this.

Grief work as a therapyhas been mostly individually-directed

and focused on the bonds o att achment to the deceased. In

contrast, this model is family focused. It particularly promotes

meaningful family relationships, a notion that is akin to

enhancing socialization to counter loneliness in the bereaved. The

family group is generally the most important source o social

support, and therefore an obvious means o comfort for the

bereaved. In particular, family grief therapy promotes adaptive

family functioning and has the potential to improve psycho-social

outcome for individual members. A useful feature is the

continuity o care by the clinician over a period o time.

This approach echoes that which the Japanese culture hasfollowed for many years, having a high regard for the extended

family in a very traditional manner. As families grow smaller and

adopt the mobile lifestyle o the modem nuclear family, these

social changes may alter the experience o family life and the ease

with which families come together. This model o family-centred

care during palliative care and bereavement provides, I believe,

a very worthwhile method o enhancing family functioning and

improving overall outcome for all concerned. t may raise issues

o training to ensurethatstaffare available to deliver such a model

o care, but the expertise already exists within psychooncology

services in Japan to support this. I co mme nd this model o

family-centered care to you.

References

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