The Role of Advance Directives in the Lives of Patients towards the End of Life by Tikva Meron, Jane Seymour and Kathryn Almack A presentation at the BSA Death, Dying and Bereavement Symposium, November 2011

1. Understanding the role of advance directives (ADs)
in the lives of patients with palliative care needs,
towards the end of life
PhD work in progress
Tikva Meron
Supervisors:
Prof. Jane Seymour
Dr. Kathy Almack
Death, Dying and Bereavement (BSA) 21 November 2011

2. Presentation outline
Definition
Background & rationale
– Israeli context
– Evidence and gaps
Aim & objectives
Design of the qualitative phase
Findings
Conclusion
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Questions

3. ADs - definition
Instructions given by a capable person,
about their wishes for treatment,
in the event that they become incapable
of giving informed consent (Dunbrack, 2006).
• Meant to be known to relatives and health-carers
• Legal stance of wishes to restrict treatment
• Emerged as a response to a major change in illness pattern
(quick death  long term conditions  longer dying)
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4. Background & rationale (1)
The Israeli context
Jews Muslim Christian Druze
5.57m (75%) 1.24 m (17%) 153,000 (2%) 122,000 (1.6%)
58% religious ~82% religious
•Population: 7.5 million (CBS, 2010)
•Dual legal system (secular & religious)
•The „Dying Patient Act – 2005‟ legalising ADs
•The right to demand life prolonging treatment
•ADs < 1% (US 18-30%; UK 8%)
•Unapplied PC policy for all long term conditions
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5. Background & rationale (2)
Evidence & gaps in research about ADs
• Healthy vs. ill people
• Focus: how to convince people to create ADs?
• ADs - an event or a process?
• Other stakeholders‟ experiences: part of a whole
• Health carers‟ knowledge & attitudes (Israel)
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6. Research aim
To examine ADs from a variety of perspectives,
by exploring the experiences, beliefs and practices
associated with their use in Israel,
to better understand their role in the lives of
patients with palliative care needs, towards the
end of life
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7. Research objectives
• Motivations to make ADs
• Changes in ADs & their reasons
• Expectations of patients with ADs
• Extent to which expectations are met
• Perspectives of other stakeholders
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8. Design
overview of qualitative phase
Theoretical
sample CSs’ variety
Actual sample
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9. CSs overview
PT age LTC Depend- System Other participants
gender ency threat
CS1 F 76 Multiple Sclerosis TD Nerve Husband, GP
CS2 F 81 Renal insufficiency PD Kidney Daughter
CS3 F 59 COPD frail Lung Cousin, pneumologist
CS4 F 62 Cancer Colon Husband, son, GP, Rabbi
CS5 M 84 Heart failure frail multiple Daughter
CS6 F 79 Cancer frail colon Son
CS7 M 90 Cancer age Son, GP
CS8 F 66 Cancer frail Kidney Husband
PT9 M 61 MND TD Nerve ---
PT10 M 83 Leukemia age ---
TD= totally dependant
9 PD= partially dependant

10. Preliminary findings
Patients: ADs are an incomplete response
Discrepancies PT relative
Difficulties in communicating between physicians
and patients
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11. ADs an incomplete answer
“A small blue tablet”
 Going to the Netherlands
 Seeking tips in the internet
 Putting the phones away from reach
 A wish for an injection by the doctor (x2)
 A secret pillbox
 Accumulating bottles of opioids
 Secret agents (x2)
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12. Discrepancies between patients
and relatives' perceptions
Relatives’
Patients’ perceptions: perceptions:
„Relatives know “In due time I will see”
what we mean‟
patient relative
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13. Illustration 1
PT relative
PT4 I gave very specific orders, and son She mentioned it [AD] but we
informed my husband and didn’t have conversations
children about it. After all it is a topic
that there are many reasons
not to discuss.
I told my son that I will choose The first time it was
him as the person to execute my discussed with me is after
wishes. It will be easier for him you spoke with my mother
than for my husband
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14. Illustration 2
patient relative
PT2 My opinion is that a person daughter In her view she is ‘broken
needs to live as long as he is vessel’ [ a shadow of her
a human being… I don't feel former self]… I think a
a human being at all… ‘broken vessel’ is when
I would like an injection she needs someone to lift
that would end me on the her, to wash her to rub
spot... in every dialysis… her bottom. I don’t think
she has reached that... In
No one else needs to know the current way she can
about this... It's a secret... continue many years.
physician-patient
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15. Communication barriers between
physicians and patients about ADs
Patients Physicians
Inaccessible Communicating is
Physicians possible when the
patient wants to speak
about this
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16. The inaccessible physician
illustrations
PT5 Well, GP is not for plans… It [planning] is needed but what can
I do?... What will I say: ‘let’s plan my life now’?
PT6 I cannot have a conversation with her [oncologist] because she
is not a type you can talk to. The less I talk to her , the
better for me…. She is so stressed
PT2 Who will allow me [to stop dialysis]?... They [physicians] will
chase my daughters.
PT10 He [physician] is religious, I cannot share this with him.
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17. Physicians who support
conversation about EoL
Dr. I never talked about ADs. It was always them who brought
CS1 it. They knew already many things… I can ask patients:
‘What would you like to do?’ ‘What do you think?’ ‘What
would you like to happen?’
Dr. I personally don’t feel comfortable with talking about
CS3 prognosis… whether harshly or not. Some people ask a direct
question but don’t really want a direct answer, rather
reassurance
Dr. I think it has to come from the side of the patient. When
CS4 this happens we can see how we can help.
Dr. With most of the people in this community I don’t see the
CS7 option of being so directly asking: ‘what do you want?’.
If someone initiates [the conversation] I have no problem
with that.
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18. Conclusion
 Voice to a selective group of people
 High determination with worrying potential
 Barriers:
 Communication
 Accessibility
 Interpretation
 Translation to action
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19. References
Bentur, N. (2008) The attitudes of physicians toward the
new "Dying Patient Act" enacted in Israel. American
Journal of Hospice & Palliative Care, 25(5): p. 361-
365.
CBS-IL (Central Bureau of Statistics - Israel) (2010)
Religiosity in Israel in 2009 [online]. Available at:
http://www.cbs.gov.il/reader/newhodaot/hodaa_template
.html?hodaa=201019101 [accessed 26 May 2010].
Dunbrack, J. (2006) Advance care planning: the
Glossary project for Health Canada.
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20. 
 
Thank you
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