The Nature of Care: Cultural and Clinical Perspectives

The Nature of Care: Cultural and
Clinical Perspectives
Rod MacLeod
10 th Australian Palliative Care Conference /8 th Asia Pacific Hospice Conference
Perth, Western Australia
September 2009

Dr Shigeaki Hinohara
• Founder and Chairman of
Life Planning Centre
• 1 st international hospice
forum
• Asia Pacific Hospice
Network
• Publications …

Sir William Osler
• “Osler’s ‘a way of life’ and
Other Addresses with
Commentary and
Annotations”
• “Sir William Osler’s
Philosophy on Death”
[Archives of Internal Medicine 1993; 118(8) 638-642]

Sir William Osler
“The delicacy and careful
attention in his choice of
words and actions are
both impressive and
touching.”

Culture
• Defined as an individual’s
race, ethnicity, religion,
gender, social status and
environment
• Shapes health-related
beliefs, behaviours and
values

Ethnicity
..the social group someone
belongs to and either
identifies with or is identified
with by others as a result of
a mix of cultural and other
factors, including one or
more of language, diet,
religion, ancestry and
physical features traditionally
associated with race.
[Bhopal R Ethnicity, race and health in multicultural
societies. Oxford, Open University Press, 2007]

National standards for culturally and
linguistically appropriate services
(CLAS) in health care services.
[US Dept of Health and Human Services, Office of Minority Health 2001]

Culture
“patterns of human behaviour that include the
language, thoughts, communications, actions,
customs, beliefs, values and institutions of
racial, ethnic, religious or social groups”
[Katz, Michael quoted in National Standards for CLAS in Health Care. Washington, US Dept of
Health and Human Services, Office of Minority Health, 2001]

Standards
• Culturally competent care -standards 1-3
• Language access services -standards 4-7
• Organizational supports for cultural
competence - standards 8-14

Culturally Competent Care: Standard 1
Health care organizations should:
• ensure that patients/consumers receive from
all staff members effective
• understandable and respectful care
• provided in a manner compatible with their
cultural health beliefs and practices and
preferred language

Culturally Competent Care: Standard 2
Health care organizations should:
• Implement strategies to recruit, retain and
promote at all levels of the organization a
diverse staff
• Provide leadership that is representative of the
demographic characteristics of the service
area

Culturally Competent Care: Standard 3
Health care organizations should ensure that:
• Staff at all levels and across all disciplines
receive on-going education
• Training in culturally and linguistically
appropriate service delivery

Ethnic minority communities
• access proportionally fewer palliative care services than
the majority population
• because of
– lack of knowledge and awareness of palliative care
services among ethnic communities
– communication difficulties between service providers and
users
– mistrust and dissatisfaction with services
– lack of accessible information leading to
misunderstandings around the nature of the illness and
prognosis
[Worth et al, 2009]

Ethnic minority communities
• Barriers to care for South Asian Sikh and Muslim patients
that included
– resource constrained services
– institutional and occasionally racial and religious
discrimination
– limited awareness and understanding among South Asian
people about the role of hospices
– difficulty discussing death
[Worth A, Irshad T, Bhopal R et al. (2009) Vulnerability and access to care for South Asian Sikh
and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative
study. British Medical Journal 338:b183 doi: 10.1136/bmj.b183]

Ethnic minority communities
• “exceptional willingness by staff to learn about
and meet needs”
• “powerful philosophy of individualised care”
• “we should treat every case as a transcultural
encounter – even with people of our own
cultural background”
[Lake R quoted in Johnson, MRD (2009) End of life care in ethnic minorities. British Medical
Journal 338:a2989 doi: 10.1136/bmj.a2989]

Culture of the Facility/Organisation
• Aged Residential
Care vs. Intensive
Care Unit
• ‘Community of
Practice’
Etienne Wenger

Community of Practice
• Values
• Construction of Narrative
• Recording
• Vision of Care
• Elements of the Care Plan
• Communication

Care
• tailored for each individual and family
• focussed on them and related to their needs
• provided through the presence of a caring
relationship by staff who demonstrate
involvement, commitment and concern
[Attree, M. (2001) Patients’ and relatives’ experiences and perspectives of ‘Good’ and ‘Not so
good’ quality care. Journal of Advanced Nursing 33, 456-466]

Care
• Behavioural and motivational elements
• Physical manifestations but also psychological,
spiritual and social dimensions
• “It is of great importance to the dying to feel
that their cultural needs, values and practices
are understood, accommodated and affirmed
by those caring for them”
[Schwass 2005]

Care
• “The undiscover’d country:
customs of the cultural and ethnic
groups of New Zealand concerning
death and dying”
• “Last words: approaches to death
in New Zealand’s cultures and
faiths”
[Schwass 2005]

Tangata whenua/ Māori
• “Illness, dying, death and
grieving are a central part of
Māori life – formal rituals and
practices are elaborate…karakia
(invocations) and waiata
(chants and songs) are
symbolic and poetic,
encouraging emotions to be
openly expressed”
[Ngata P. Death dying and grief in Schwass M 2005]

Pacific peoples
• Fiji - life and decisions revolve around the
vanua (social group)
• Samoa - fa’asamoa (Samoan culture) places
aiga (family) at the centre of life and death

What’s important to you?

Revised cultural formulation
• Step 1 – ethnic identity
Ask about ethnic identity and whether it matters to the
patient
• Step 2 – what is at stake?
What is at stake as the patient and their loved ones face
an episode of illness?
• Step 3 – the illness narrative
Reconstruct the patient’s story and what it means to them

Revised cultural formulation
• Step 4 – psychosocial stresses
What ongoing stresses and social supports characterise the
patient’s life?
• Step 5 – influence of culture on clinical relationships
First do no harm by stereotyping – remember we are all
grounded in our own world and not the world of the ‘other’.
Find out about it.
• Step 6 – the problems of the cultural competency approach
Does this intervention actually work in particular cases?
[Kleinman, A, Benson, P (2006) Anthropology in the clinic: the problem of cultural
competency and how to fix it. PLoS Med 3(10): e294.DOI:
10.1371/journal.pmed.0030294]

Explanatory models approach
• What do you call this problem?
• What do you believe is the cause of this
problem?
• What course do you expect it to take?
• What do you think this problem does inside
your body?

Explanatory models approach
• How does it affect your
body and your mind?
• What do you fear most
about this condition?
• What do you fear most
about the treatment?

CHAT (Culture and Health-belief Assessment Tool)
• When you have a problem who do you turn to?
• For your future care who would you like involved?
• What have you done to treat your illness?
• Is there anything that might conflict with your
treatment regimen?
• Are you feeling comfortable or uncertain about what we
have decided?

We must remember that
our culture effects
what we do as well

Ward culture and socialisation
• Team culture
• Rites of passage
• Vulnerability
• Community of practice (Wenger)
31

Critical elements of culturally competent
communication
• Communication repertoire
• Situational awareness
• Adaptability
• Knowledge about core cultural issues
[Teal, Street 2008]

What is care?

The Nature of Care
William Osler suggests carers should be
-dependable
-confident
- sympathetic
- able to deal with uncertainty
Caring is not a one-way relationship but reciprocal
and fundamentally intersubjective
34

Empathy
• the capacity to enter the
subjective world of
another (their lifeworld)
• shared concepts and
shared human nature
• to feel as the other person
is thought to feel
www.empathysymbol.com
35

Theory of mind
• An understanding of one’s own mind and
those of others
• Continues along a developmental trajectory
• The more social interaction, the deeper a
person’s understanding of others’ thoughts
and feelings
• Bellini & Shea (2005) showed empathy
declined over 3 years of clinical training
36

Doctors’ stories
• Renal failure
• Woman and her son
• The cleaning lady’s
poems
• “Soft sift in an
hourglass”
Rosalie Shaw

Attachment theory
• Secure
– Reflect their role models
(parents etc)
• Insecure-avoidant
– Compulsively self-reliant –
others can’t be relied on
• Insecure-anxious
– Clingy, anxious manner –
lack faith in their own ability
to cope
38

Vulnerability

Attachment style
• Interpret
attachment
patterns within
the family
• Doctor’s own
attachment style

CARE
• Communicate
effectively
• Arrange to meet
healthcare needs
• Respectful
• Empathetic

• Set life priorities
• Learn to value who you are
• Understand your own needs
• Learn to say “I don’t know”
• Learn to say “No”
• Take a holiday

I am a part of all that I have met.
-Alfred Lord Tennyson