The Nature of Care: Cultural and Clinical Perspectives
The Nature of Care: Cultural and Clinical Perspectives
The Nature of Care: Cultural and Clinical Perspectives
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<strong>The</strong> <strong>Nature</strong> <strong>of</strong> <strong>Care</strong>: <strong>Cultural</strong> <strong>and</strong><br />
<strong>Clinical</strong> <strong>Perspectives</strong><br />
Rod MacLeod<br />
10 th Australian Palliative <strong>Care</strong> Conference /8 th Asia Pacific Hospice Conference<br />
Perth, Western Australia<br />
September 2009
Dr Shigeaki Hinohara<br />
• Founder <strong>and</strong> Chairman <strong>of</strong><br />
Life Planning Centre<br />
• 1 st international hospice<br />
forum<br />
• Asia Pacific Hospice<br />
Network<br />
• Publications …
Sir William Osler<br />
• “Osler’s ‘a way <strong>of</strong> life’ <strong>and</strong><br />
Other Addresses with<br />
Commentary <strong>and</strong><br />
Annotations”<br />
• “Sir William Osler’s<br />
Philosophy on Death”<br />
[Archives <strong>of</strong> Internal Medicine 1993; 118(8) 638-642]
Sir William Osler<br />
“<strong>The</strong> delicacy <strong>and</strong> careful<br />
attention in his choice <strong>of</strong><br />
words <strong>and</strong> actions are<br />
both impressive <strong>and</strong><br />
touching.”
Culture<br />
• Defined as an individual’s<br />
race, ethnicity, religion,<br />
gender, social status <strong>and</strong><br />
environment<br />
• Shapes health-related<br />
beliefs, behaviours <strong>and</strong><br />
values
Ethnicity<br />
..the social group someone<br />
belongs to <strong>and</strong> either<br />
identifies with or is identified<br />
with by others as a result <strong>of</strong><br />
a mix <strong>of</strong> cultural <strong>and</strong> other<br />
factors, including one or<br />
more <strong>of</strong> language, diet,<br />
religion, ancestry <strong>and</strong><br />
physical features traditionally<br />
associated with race.<br />
[Bhopal R Ethnicity, race <strong>and</strong> health in multicultural<br />
societies. Oxford, Open University Press, 2007]
National st<strong>and</strong>ards for culturally <strong>and</strong><br />
linguistically appropriate services<br />
(CLAS) in health care services.<br />
[US Dept <strong>of</strong> Health <strong>and</strong> Human Services, Office <strong>of</strong> Minority Health 2001]
Culture<br />
“patterns <strong>of</strong> human behaviour that include the<br />
language, thoughts, communications, actions,<br />
customs, beliefs, values <strong>and</strong> institutions <strong>of</strong><br />
racial, ethnic, religious or social groups”<br />
[Katz, Michael quoted in National St<strong>and</strong>ards for CLAS in Health <strong>Care</strong>. Washington, US Dept <strong>of</strong><br />
Health <strong>and</strong> Human Services, Office <strong>of</strong> Minority Health, 2001]
St<strong>and</strong>ards<br />
• <strong>Cultural</strong>ly competent care -st<strong>and</strong>ards 1-3<br />
• Language access services -st<strong>and</strong>ards 4-7<br />
• Organizational supports for cultural<br />
competence - st<strong>and</strong>ards 8-14
<strong>Cultural</strong>ly Competent <strong>Care</strong>: St<strong>and</strong>ard 1<br />
Health care organizations should:<br />
• ensure that patients/consumers receive from<br />
all staff members effective<br />
• underst<strong>and</strong>able <strong>and</strong> respectful care<br />
• provided in a manner compatible with their<br />
cultural health beliefs <strong>and</strong> practices <strong>and</strong><br />
preferred language
<strong>Cultural</strong>ly Competent <strong>Care</strong>: St<strong>and</strong>ard 2<br />
Health care organizations should:<br />
• Implement strategies to recruit, retain <strong>and</strong><br />
promote at all levels <strong>of</strong> the organization a<br />
diverse staff<br />
• Provide leadership that is representative <strong>of</strong> the<br />
demographic characteristics <strong>of</strong> the service<br />
area
<strong>Cultural</strong>ly Competent <strong>Care</strong>: St<strong>and</strong>ard 3<br />
Health care organizations should ensure that:<br />
• Staff at all levels <strong>and</strong> across all disciplines<br />
receive on-going education<br />
• Training in culturally <strong>and</strong> linguistically<br />
appropriate service delivery
Ethnic minority communities<br />
• access proportionally fewer palliative care services than<br />
the majority population<br />
• because <strong>of</strong><br />
– lack <strong>of</strong> knowledge <strong>and</strong> awareness <strong>of</strong> palliative care<br />
services among ethnic communities<br />
– communication difficulties between service providers <strong>and</strong><br />
users<br />
– mistrust <strong>and</strong> dissatisfaction with services<br />
– lack <strong>of</strong> accessible information leading to<br />
misunderst<strong>and</strong>ings around the nature <strong>of</strong> the illness <strong>and</strong><br />
prognosis<br />
[Worth et al, 2009]
Ethnic minority communities<br />
• Barriers to care for South Asian Sikh <strong>and</strong> Muslim patients<br />
that included<br />
– resource constrained services<br />
– institutional <strong>and</strong> occasionally racial <strong>and</strong> religious<br />
discrimination<br />
– limited awareness <strong>and</strong> underst<strong>and</strong>ing among South Asian<br />
people about the role <strong>of</strong> hospices<br />
– difficulty discussing death<br />
[Worth A, Irshad T, Bhopal R et al. (2009) Vulnerability <strong>and</strong> access to care for South Asian Sikh<br />
<strong>and</strong> Muslim patients with life limiting illness in Scotl<strong>and</strong>: prospective longitudinal qualitative<br />
study. British Medical Journal 338:b183 doi: 10.1136/bmj.b183]
Ethnic minority communities<br />
• “exceptional willingness by staff to learn about<br />
<strong>and</strong> meet needs”<br />
• “powerful philosophy <strong>of</strong> individualised care”<br />
• “we should treat every case as a transcultural<br />
encounter – even with people <strong>of</strong> our own<br />
cultural background”<br />
[Lake R quoted in Johnson, MRD (2009) End <strong>of</strong> life care in ethnic minorities. British Medical<br />
Journal 338:a2989 doi: 10.1136/bmj.a2989]
Culture <strong>of</strong> the Facility/Organisation<br />
• Aged Residential<br />
<strong>Care</strong> vs. Intensive<br />
<strong>Care</strong> Unit<br />
• ‘Community <strong>of</strong><br />
Practice’<br />
Etienne Wenger
Community <strong>of</strong> Practice<br />
• Values<br />
• Construction <strong>of</strong> Narrative<br />
• Recording<br />
• Vision <strong>of</strong> <strong>Care</strong><br />
• Elements <strong>of</strong> the <strong>Care</strong> Plan<br />
• Communication
<strong>Care</strong><br />
• tailored for each individual <strong>and</strong> family<br />
• focussed on them <strong>and</strong> related to their needs<br />
• provided through the presence <strong>of</strong> a caring<br />
relationship by staff who demonstrate<br />
involvement, commitment <strong>and</strong> concern<br />
[Attree, M. (2001) Patients’ <strong>and</strong> relatives’ experiences <strong>and</strong> perspectives <strong>of</strong> ‘Good’ <strong>and</strong> ‘Not so<br />
good’ quality care. Journal <strong>of</strong> Advanced Nursing 33, 456-466]
<strong>Care</strong><br />
• Behavioural <strong>and</strong> motivational elements<br />
• Physical manifestations but also psychological,<br />
spiritual <strong>and</strong> social dimensions<br />
• “It is <strong>of</strong> great importance to the dying to feel<br />
that their cultural needs, values <strong>and</strong> practices<br />
are understood, accommodated <strong>and</strong> affirmed<br />
by those caring for them”<br />
[Schwass 2005]
<strong>Care</strong><br />
• “<strong>The</strong> undiscover’d country:<br />
customs <strong>of</strong> the cultural <strong>and</strong> ethnic<br />
groups <strong>of</strong> New Zeal<strong>and</strong> concerning<br />
death <strong>and</strong> dying”<br />
• “Last words: approaches to death<br />
in New Zeal<strong>and</strong>’s cultures <strong>and</strong><br />
faiths”<br />
[Schwass 2005]
Tangata whenua/ Māori<br />
• “Illness, dying, death <strong>and</strong><br />
grieving are a central part <strong>of</strong><br />
Māori life – formal rituals <strong>and</strong><br />
practices are elaborate…karakia<br />
(invocations) <strong>and</strong> waiata<br />
(chants <strong>and</strong> songs) are<br />
symbolic <strong>and</strong> poetic,<br />
encouraging emotions to be<br />
openly expressed”<br />
[Ngata P. Death dying <strong>and</strong> grief in Schwass M 2005]
Pacific peoples<br />
• Fiji - life <strong>and</strong> decisions revolve around the<br />
vanua (social group)<br />
• Samoa - fa’asamoa (Samoan culture) places<br />
aiga (family) at the centre <strong>of</strong> life <strong>and</strong> death
What’s important to you?
Revised cultural formulation<br />
• Step 1 – ethnic identity<br />
Ask about ethnic identity <strong>and</strong> whether it matters to the<br />
patient<br />
• Step 2 – what is at stake?<br />
What is at stake as the patient <strong>and</strong> their loved ones face<br />
an episode <strong>of</strong> illness?<br />
• Step 3 – the illness narrative<br />
Reconstruct the patient’s story <strong>and</strong> what it means to them
Revised cultural formulation<br />
• Step 4 – psychosocial stresses<br />
What ongoing stresses <strong>and</strong> social supports characterise the<br />
patient’s life?<br />
• Step 5 – influence <strong>of</strong> culture on clinical relationships<br />
First do no harm by stereotyping – remember we are all<br />
grounded in our own world <strong>and</strong> not the world <strong>of</strong> the ‘other’.<br />
Find out about it.<br />
• Step 6 – the problems <strong>of</strong> the cultural competency approach<br />
Does this intervention actually work in particular cases?<br />
[Kleinman, A, Benson, P (2006) Anthropology in the clinic: the problem <strong>of</strong> cultural<br />
competency <strong>and</strong> how to fix it. PLoS Med 3(10): e294.DOI:<br />
10.1371/journal.pmed.0030294]
Explanatory models approach<br />
• What do you call this problem?<br />
• What do you believe is the cause <strong>of</strong> this<br />
problem?<br />
• What course do you expect it to take?<br />
• What do you think this problem does inside<br />
your body?
Explanatory models approach<br />
• How does it affect your<br />
body <strong>and</strong> your mind?<br />
• What do you fear most<br />
about this condition?<br />
• What do you fear most<br />
about the treatment?
CHAT (Culture <strong>and</strong> Health-belief Assessment Tool)<br />
• When you have a problem who do you turn to?<br />
• For your future care who would you like involved?<br />
• What have you done to treat your illness?<br />
• Is there anything that might conflict with your<br />
treatment regimen?<br />
• Are you feeling comfortable or uncertain about what we<br />
have decided?
We must remember that<br />
our culture effects<br />
what we do as well
Ward culture <strong>and</strong> socialisation<br />
• Team culture<br />
• Rites <strong>of</strong> passage<br />
• Vulnerability<br />
• Community <strong>of</strong> practice (Wenger)<br />
31
Critical elements <strong>of</strong> culturally competent<br />
communication<br />
• Communication repertoire<br />
• Situational awareness<br />
• Adaptability<br />
• Knowledge about core cultural issues<br />
[Teal, Street 2008]
What is care?
<strong>The</strong> <strong>Nature</strong> <strong>of</strong> <strong>Care</strong><br />
William Osler suggests carers should be<br />
-dependable<br />
-confident<br />
- sympathetic<br />
- able to deal with uncertainty<br />
Caring is not a one-way relationship but reciprocal<br />
<strong>and</strong> fundamentally intersubjective<br />
34
Empathy<br />
• the capacity to enter the<br />
subjective world <strong>of</strong><br />
another (their lifeworld)<br />
• shared concepts <strong>and</strong><br />
shared human nature<br />
• to feel as the other person<br />
is thought to feel<br />
www.empathysymbol.com<br />
35
<strong>The</strong>ory <strong>of</strong> mind<br />
• An underst<strong>and</strong>ing <strong>of</strong> one’s own mind <strong>and</strong><br />
those <strong>of</strong> others<br />
• Continues along a developmental trajectory<br />
• <strong>The</strong> more social interaction, the deeper a<br />
person’s underst<strong>and</strong>ing <strong>of</strong> others’ thoughts<br />
<strong>and</strong> feelings<br />
• Bellini & Shea (2005) showed empathy<br />
declined over 3 years <strong>of</strong> clinical training<br />
36
Doctors’ stories<br />
• Renal failure<br />
• Woman <strong>and</strong> her son<br />
• <strong>The</strong> cleaning lady’s<br />
poems<br />
• “S<strong>of</strong>t sift in an<br />
hourglass”<br />
Rosalie Shaw
Attachment theory<br />
• Secure<br />
– Reflect their role models<br />
(parents etc)<br />
• Insecure-avoidant<br />
– Compulsively self-reliant –<br />
others can’t be relied on<br />
• Insecure-anxious<br />
– Clingy, anxious manner –<br />
lack faith in their own ability<br />
to cope<br />
38
Vulnerability
Attachment style<br />
• Interpret<br />
attachment<br />
patterns within<br />
the family<br />
• Doctor’s own<br />
attachment style
CARE<br />
• Communicate<br />
effectively<br />
• Arrange to meet<br />
healthcare needs<br />
• Respectful<br />
• Empathetic
• Set life priorities<br />
• Learn to value who you are<br />
• Underst<strong>and</strong> your own needs<br />
• Learn to say “I don’t know”<br />
• Learn to say “No”<br />
• Take a holiday
I am a part <strong>of</strong> all that I have met.<br />
-Alfred Lord Tennyson