The Role of Advance Directives in the Lives of Patients towards the End of Life by Tikva Meron, Jane Seymour and Kathryn Almack

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 AlmackDeath, Dying and Bereavement (BSA) 21 November 2011

Presentation outline Definition Background & rationale – Israeli context – Evidence and gaps Aim & objectives Design of the qualitative phase Findings Conclusion2 Questions

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)3

Background & rationale (1) The Israeli context Jews Muslim Christian Druze5.57m (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 conditions4 4

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)5

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 life6

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 stakeholders7

Design overview of qualitative phase Theoretical sample CSs’ variety Actual sample8

CSs overview PT age LTC Depend- System Other participants gender ency threatCS1 F 76 Multiple Sclerosis TD Nerve Husband, GPCS2 F 81 Renal insufficiency PD Kidney DaughterCS3 F 59 COPD frail Lung Cousin, pneumologistCS4 F 62 Cancer Colon Husband, son, GP, RabbiCS5 M 84 Heart failure frail multiple DaughterCS6 F 79 Cancer frail colon SonCS7 M 90 Cancer age Son, GPCS8 F 66 Cancer frail Kidney HusbandPT9 M 61 MND TD Nerve ---PT10 M 83 Leukemia age --- TD= totally dependant 9 PD= partially dependant

Preliminary findings Patients: ADs are an incomplete response Discrepancies PT relative Difficulties in communicating between physicians and patients10

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)11

Discrepancies between patients and relatives perceptions Relatives’ Patients’ perceptions: perceptions: „Relatives know “In due time I will see” what we mean‟ patient relative12

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 husband13

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 dont 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... Its a secret... continue many years. physician-patient14

Communication barriers between physicians and patients about ADs Patients Physicians Inaccessible Communicating is Physicians possible when the patient wants to speak about this15

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.16

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.17

Conclusion  Voice to a selective group of people  High determination with worrying potential  Barriers:  Communication  Accessibility  Interpretation  Translation to action18

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.19

   Thank you20 20

The Role of Advance Directives in the Lives of Patients towards the End of Life by Tikva Meron, Jane Seymour and Kathryn Almack

by British Sociological Association on Jan 03, 2012

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The Role of Advance Directives in the Lives of Patients towards the End of Life by Tikva Meron, Jane Seymour and Kathryn Almack — Presentation Transcript