ADVANCE DIRECTIVES

Nataliya Polchenko GERO-820, SFU

November 29th, 2010

Outline• What is it?• Why is it important?• Advance Directives in US and Canada• Barriers to Completion of Advance Directives • Theories and concepts for an intervention program• An example of intervention program

Why are we going to talk about it today?Relevance to the course. • Good communication and education about end of life is an

essential part of healthy aging (Neimeyer, Wittkowski, & Moser, 2004).

Ubiquity of death• Not all of us get married…• Not all of us get a degree…• Not all of us have children…• But all of us will die – and we usually have no idea when.

Fantasy Death Exercise…

• Consider for a moment the most wonderful death you can imagine for yourself. It doesn’t have to be realistic; it can be quite fantastic. Give it your best shot. • Where are you?• Who is with you?• What are you doing? • Any physical or emotional symptoms?• How long have you known?

…Fantasy Death: There are Common Themes

• Feeling at home, or being at home• Comfort• Sense of completion (tasks accomplished)• Saying goodbyes• Life review• Love• No pain• Make it quick

Reality of Death:

Site of Death in Canada, 2004

Hospitals, 60.6%Nursing Homes, 9.9%Non-institutional, 29.5%

Wilson et al., 2009

Reality of Death:Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT)

• A landmark study regarding end-of-life decision making and advance care planning

• Controlled trial to improve care of seriously ill hospitalized patients

• Multicenter study • 9000 patients with life threatening illness

-1st phase—How people die in hospitals

-2nd phase—RCT of nurse based intervention, 2500 subjects in each group

Physician Did Not Understand That a Patient Wanted to Avoid CPR

Understood, 47%Did not understand, 53%

53%

Prolonged Suffering: 10 or More Days in ICU, in Coma, or on Ventilator

38%

Experienced Moderate or Severe Pain at Least Half of the Time Within Their Last Few Days

50%

Are these data consistent with your fantasy death scene?

Restoring the Balance:Components of “good death”

• pain and symptom management,• good patient-physician communication, • being prepared for what to expect, • achieving a sense of completion in life, • clear decision making, • and being treated as a “whole person.”

(Steinhauser, 2000)

Restoring the Balance: The Importance of Advance Directives (AD)

Mechanical Care

Communication

& AD

Fraser Health Advance Care Planning Movie

What is Advanced Directives (AD)?

• Planning for future medical care in the event patient is unable to make own decisions• Needs to be updated regularly

• Empowers patient to explore own values, goals• Determine a proxy decision-maker• It is a process, not an event• Proper documentation avoids confusion & conflict

Advance Directives

Instructional Directiveor “Living Wills”

• what (or how) health care decisions are to be made

• may set out specific instructions, e.g:• Do not resuscitate order• Organ donor card• No blood transfusion

• Personal letter with EOL wishes

Proxy Directiveor “Power of Attorney”

• who you want to make decisions for you—”substitute decision-maker” (one or several)

• Health Care Proxy or Agent

Benefits of AD—Empirical EvidenceDetering, K., Hancock, A., Reade, M., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. British Medical Journal, 340, c1345.

Benefits of ADOutcome Measures:• Main outcome measures: The primary outcome was

whether a patient’s end of life wishes were known and respected.

• Secondary outcomes: patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died.

Benefits of ADResults:

Intervention

Group

Control Group

EOL Wishes Respected

86%

30%

Stress Level in Family

5

15

Anxiety

0

3

Depression

0

5

Conclusion:• Advance care planning improves:

• end of life care • patient and family satisfaction

• Advance care planning reduces:• stress, • anxiety, • and depression in surviving relatives.

Benefits of AD:More evidence

• Completing an advance directive is modestly associated with dying in place (i.e., home or nursing home) rather than in a hospital (Degenholtz, Rhee, & Arnold, 2004).

• Completion of AD was associated with greater use of hospice and fewer reported concerns with physician communication (Teno et al., 2007)

Advance Care Planning in U.S.• Since 1970s living will emerged as a mechanism by which

interested persons could exercise a degree of control over their medical destinies

• The U.S. Living Will Registry • Has been storing advance directives since 1996:

http://www.uslivingwillregistry.com/

Advance Care Planning in Canada• Legislation on AD falls under provincial jurisdiction• No national or provincial registries• Canadian Nurses Association (1994) and Canadian

Medical Association (1992) support the concept of advance directives.

• While the issue of advance directives has not been directly addressed in Canadian courts, some Canadian court decisions support the concept of advance directives (The Shulman Case, 1990)

• It has been recommended that all Canadian provinces implement legislation related to advance directives (Senate of Canada, 1995).

Province Instruction Proxy Reciprocity

Alberta

Manitoba

Newfoundland and Labrador

Nova Scotia

Ontario

Québec

Yukon

British Columbia

New Brunswick No Legislation

Northwest Territories

Nunavut No Legislation

Prince Edward Island

Saskatchewan

Advance Directives in Canada

Advance Directives in BC• The Representation Agreement Act (in force since 2000)

enables individuals to a representative to make decisions, including health care decisions, on their behalf should they become incapable of making these decisions.

• Since 2003, an adult may make an instruction or wish that must be followed: • in an emergency by a physician or other health care provider when no

family member is available to make decisions; and • in a non-emergency by a temporary substitute decision maker.• i.e. health care providers cannot act directly on your instructions for

future health care. They must consult your substitute decision maker, who will make the decision.

• Changes in B.C. law concerning advance health care planning are anticipated• Bill 32 – introduced in 2006, still in consultation process

Advance Directives in BC: Bill 32• Bill 32 responds to the desire of many British Columbians

for greater accessibility and choice in advance planning options, similar to other jurisdictions, by:• strengthening representation agreements by streamlining the

execution requirements, making them easier and less costly to make;

• providing capable adults with the option of providing advance written instructions directly to health care providers, without the involvement of a substitute decision-maker, in non-emergency situations; and

• providing safeguards to avoid or lessen the potential for abuse or misuse of these instruments.

How does it work today in BC?• Emergency:

• Conscious—discussion, forms• Unconscious—default (full code) unless specified in Medical Alert

• Non-emergency:• Conscious, competent—discussion, forms• Unconscious, incompetent—contacting a representative

• Representation agreement is needed in addition to living will

• Examples of forms

State of Advance Care Planning: • the first discussion of advance care planning occurs

during an acute hospitalization (Reisfield & Wilson, 2004);

• advance care planning still occurs infrequently and typically in the context of an acute illness or event, when it may no longer be considered ‘advanced’ (Malcomson & Bisbee, 2009)

• Despite 86% of older adults agree that AD are desirable, few have them and even fewer understand them or have properly communicated them to their families or health care professionals (Suri, Egleston, Brody, & Rudberg, 1999)

Problems with Advance Care Planning• Sometimes older person mistakenly assumes that their

preferences are known (Malcomson & Bisbee, 2009).• 9% to 30% have some type of formal, written advance

directive in place (Coppola, et al.,2001)• Only 10% of Canadians have completed an advance

directive • But even when the advance directives or representation

agreements are communicated and/or documented, unfortunately, a majority of them are not based on good information (Winter, Parker, & Schneider, 2007):• E.g., misunderstandings about medical circumstances under which

surrogates make decisions and the type of decisions required

Negative Aspects of AD• Requires interpretation (broad, imprecise language) • Pre-deciding is not based on complete information• Patient’s goals and preferences may change• Health care providers often don’t know about patient’s

completed AD • Rarely make a significant difference in practice• Ethical dilemmas:

• AD and Dementia: what if the current wishes of a patient with dementia contradict the patient's wishes contained in an advance directive?

• Conflict of interest in an proxy (e.g., emotional burden, marital discord, financial motivations). [Hypothetical: Terri Shiavo parents]

Sometimes AD are unenforceable…

Patient Barriers to Completion of Advance Directives (AD)

• Belief that physicians should initiate discussions• Patients felt discussions should occur earlier than MDs. At

earlier age, earlier in disease history, earlier in patient-doctor relationship.

• Procrastination• Apathy• Belief that family should decide• Family would be upset by the planning process• Fear of burdening family members• Discomfort with the topic

Methods-Sample

• Several seniors’ centres, workplaces and gatherings for bingo and soaring

• 226 adults ranging from 18 to 85+ years old

• 144 women, 77 men

• Almost half our sample were baby boomers

Age distribution

Results:Too sensitive?

• 81.8% of respondents disagree, 9.1% agree, and 9.1% undecided.

Results: Who should initiate the conversation about one’s EOL wishes?

• 95.9% the participant should be responsible to initiate• 61.8% family members should begin a conversation• 46.7% expect health care professionals to initiate• 25.8% expect non-medical professionals to initiate such a

conversation.

Results:When to plan for end-of-life?

• Majority of respondents - almost 85% - agreed that the best time to plan for end-of-life is when they are active and healthy.

Results: Unmet Need for More EOL Information

• Almost 90% of participants wanted to learn more

• Only 12% did not wish to know more; • 150 participants (66%)

wished to know more about health-related EOL issues,

• 138 participants (61%)—about legal EOL issues,

• and 108 participants (46%)—about practical EOL issues.

Critical analysis of the study:• majority of respondents rated their quality of life from

good to excellent. The results should not be generalized to those who consider their quality of life as poor

• a convenience sample was used for this study, so the findings cannot be generalized to the whole population

• a selection bias may have occurred when we chose certain locations for data collection over other locations

• It should not be assumed that everyone has the same definitions for the concepts (AD, EOL) used in this study.

Implications of the study• There is unmet need for information on AD• Adults are open and ready to discuss and make AD

Physician Barriers to Advance Care Planning

• Patients should initiate discussions.• Physician lack of understanding of AD• MD erroneous beliefs about appropriateness• Lack of knowledge about AD’s• Discomfort with the topic.• Time constraints.• Negative attitude.

What to Do to Improve the Drawbacks?

• Good communication• Good education• To change a paradigm from the Legal Transactional

Approach to the Communications Approach—more dynamic and flexible• An example: Physician Orders for Life-Sustaining Treatment, or

POLST• A physician/nurse practitioner order• Can be completed by any provider but must be signed by MD, DO or NP• Complements, but does not replace, advance directives• Voluntary use, but provides consistent recognized document.

• Interventions are needed

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What Interventions Are more Successfulin Advance Care Planning?• An intervention can be considered effective if it increases

AD completion rate• Systematic review (Tamayo-Velazquez, 2010) of AD

promotional interventions:• Most effective—the combination of informative material and

repeated conversations over clinical visits• The use of passive informative material in isolation does not

significantly increase AD completion rates.• Interactive informative interventions increase the AD completion

rate• Multiple sessions as the most effective method for direct interaction

between patients and health care professionals

AD and Health Promotion: same key concepts:

• Health• Health Promotion• Empowerment• Health Literacy• Determinants of health• Quality of life

Some Relevant Theories and Frameworks

•Health Belief•Stages of change

Intrapersonal

•Clinician-patient communication•Social networks/social support

Interpersonal

•Communication Theory•Organizational change

Community and Group

•Social marketingModels For Using Theories

An Example Of AD Intervention• http://www.fraserhealth.ca/your_care/future_health_care_decisions/future_health_care_decisions

Take Home Lessons…• Healthy dying is a part of healthy living and healthy aging

• Advance directives can facilitate this process• Advance Care Planning has multiple documented benefits for all parties involved

• Advance Care Planning has some (resolvable) problems

• Advance Care Planning must become a routine, structured intervention—and, preferably, the earlier, the better

References• Browne, A., & Sullivan, B. (2006). Advance Directives in Canada. Cambridge Quarterly of Healthcare Ethics, 15(03), 256-

260.• Collins, L., Parks, S., & Winter, L. (2006). The state of advance care planning: one decade after SUPPORT. American

Journal of Hospice and Palliative Medicine, 23(5), 378.• de Boer, M. E., Hertogh, C. M. P. M., Dröes, R.-M., Jonker, C., & Eefsting, J. A. (2010). Advance directives in dementia:

issues of validity and effectiveness. International Psychogeriatrics, 22(02), 201-208.• Degenholtz, H., Rhee, Y., & Arnold, R. (2004). Brief communication: the relationship between having a living will and dying

in place. Annals of internal medicine, 141(2), 113.• Detering, K., Hancock, A., Reade, M., & Silvester, W. (2010). The impact of advance care planning on end of life care in

elderly patients: randomised controlled trial. British Medical Journal, 340, c1345.• Goodridge, D. (2010). End of life care policies: Do they make a difference in practice? Social Science & Medicine, 70(8),

1166-1170.• Hickman, S. E., Nelson, C. A., Perrin, N. A., Moss, A. H., Hammes, B. J., & Tolle, S. W. (2010). A Comparison of Methods

to Communicate Treatment Preferences in Nursing Facilities: Traditional Practices Versus the Physician Orders for Life-Sustaining Treatment Program. Journal of the American Geriatrics Society, 58(7), 1241-1248.

• Sabatino, C. (2010). The Evolution of Health Care Advance Planning Law and Policy. Milbank Quarterly, 88(2), 211-239.• Steinhauser, K., Clipp, E., McNeilly, M., Christakis, N., McIntyre, L., & Tulsky, J. (2000). In search of a good death:

observations of patients, families, and providers. Annals of internal medicine, 132(10), 825.• Tamayo-Velázquez, M., Simón-Lorda, P., Villegas-Portero, R., Higueras-Callejón, C., García-Gutiérrez, J., Martínez-

Pecino, F., et al. (2010). Interventions to promote the use of advance directives: An overview of systematic reviews. Patient education and counseling, 80(1), 10-20.

• Teno, J., Gruneir, A., Schwartz, Z., Nanda, A., & Wetle, T. (2007). Association Between Advance Directives and Quality of End of Life Care: A National Study. Journal of the American Geriatrics Society, 55(2), 189-194.

• Wilson, D., Truman, C., Thomas, R., Fainsinger, R., Kovacs-Burns, K., Froggatt, K., et al. (2009). The rapidly changing location of death in Canada, 1994-2004. Social Science & Medicine, 68(10), 1752-1758.