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Facilitating Treatment Decision-Making about EOL Care for Persons with COPD

Facilitating Treatment Decision-Making about EOL Care for Persons with COPD. Donna Goodridge, RN, Ph.D. College of Nursing, University of Saskatchewan. Conflict of Interest. I have no conflicts of interest to declare. Bill’s Story.

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Facilitating Treatment Decision-Making about EOL Care for Persons with COPD

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  1. Facilitating Treatment Decision-Making about EOL Care for Persons with COPD Donna Goodridge, RN, Ph.D. College of Nursing, University of Saskatchewan

  2. Conflict of Interest • I have no conflicts of interest to declare.

  3. Bill’s Story • “The two doctors talked about the tube they wanted to connect….put tubes down the throat. I thought: poke a hole in me?…the tube scared me. I didn’t know nothing about this tube…Are they gonna keep it in me for the rest of my life then or what?…It scared me…I’d rather go on the way I am now than have a tube…I thought I’d rather live like this and wait for a lung transplant than with a tube in me…and I said no.”

  4. Treatment Decision-Making • 42.5% required decision making, of whom 70.3% lacked decision making capacity • Majority of elderly patients lack capacity to make decisions during end of life period • Most received care in line with preferences • Most (92%) opted for limited or comfort care Silviera, Kim and Langa. Advance directives and outcomes of surrogate decision making before death. NEJM 2011; 362:1211-1218.)

  5. The Landscape of Dying • 1 in 3 deaths among Canadians aged 80 years and older (Statistics Canada, 2005) • 90% of all deaths in Canada are not sudden or unexpected (BC Ministry of Health, 2006) • Open awareness • Given this anticipation, planning for a “good death” is possible

  6. Where are We Headed? • 250,ooo Canadians die annually • Of these, 10,ooo die of COPD and its complications • By 2035, the number of deaths will increase by 55% to 375,000 • Assuming no increase in prevalence, 15,000 people will die in 2035 of COPD

  7. The Challenge • Compared to people with cancer, hospitalized patients with COPD are: • More likely to receive life support • To die in intensive care units • To never have a dialogue about health care preferences Claesens, Lynn, Zhong et al. Dying with lung cancer of chronic obstructive obstructive pulmonary disease: Insights from SUPPORT. J Am Geriatr Soc 2000; 48:5 Suppl:S146-153.

  8. Acute Event Mortality • Myocardial Infarction • 25%-38% of patients hospitalized with MI die within 12 months (Thom et al., 2006) • In-hospital mortality for acute MI 8.0-9.4% • Exacerbation COPD • 22-43% of patients hospitalized with AECOPD die within 1 year (Eriksen et a., 2003; Groenewegen et al., 2003) • In-hospital mortality for AECOPD is 7.8%-11.0%

  9. Estimation of Prognosis in COPD • 6 month mortality of 30-40% can be anticipated in patients with two of the following: • Baseline arterial pCO2 >45 mm Hg • FEV1 <0.75 • Cor pulmonale • >1 episode of respiratory failure in one year Steinhauser , Arnold, Olsen et al. (2011). Comparing three life-limiting diseases: does diagnosis matter of is sick, sick? J Pain Symptom Manag in press.

  10. Common Disease Trajectories

  11. Places of Death in Canada

  12. Planning for Place of Death • Surveys have consistently indicated that at least 60% of people want to die at home • Families of patients dying in ICUs are five times more likely to suffer from PTSD

  13. Challenges with Our Current Model of ACP • 25% of patients receive care inconsistent with their advance directives • 29% of patients change their minds about life-sustaining treatment over time • 30% of surrogates incorrectly interpret their relative’s advance directive • 78% of patients with life-threatening illnesses prefer to leave decisions about resuscitation to their physicians and families O’Reilly KB. Defective directives: Struggling with end of life care. American Medical Association News 2009; http://www.ama-assn.org/amednews/2009/01/05/prsa0105.htm

  14. Common Assumptions r/t ACP • Patients/families are comfortable in discussing issues related to end of life care • Patients/families understand basic information about treatment options • Patients are able to choose preferred treatments from a “menu” of options

  15. Information from Media

  16. Outcomes of CPR • Despite numerous attempts to enhance the delivery of CPR, survival after inpatient arrest in 2005 remained at 18.3% (same as 1992) • 27.0% COPD patients who died had CPR • Survival to discharge was 18.9% Ehlenbach et al. Epidemiological study of in-hospital cardiopulmonary resuscitation in the elderly. NEJM 2009;361:22-31)

  17. Common Mind-Sets About Dying in Older Adults • Neither ready nor accepting (34%) • Not ready but accepting (25%) • Ready and accepting (16%) • Ready, accepting and wishing death would come (6%) • Considering a hastened death (18%) Schroepfer TA. Mind frames towards dying and factors motivating their adoption by terminally ill elders. J Gerontol 2006; 61B:S129-S139.

  18. “It’s not that I’m afraid of dying – I just don’t want to be there when it happens”

  19. Public Views on Dying and Death • 42% wanted his/her AD followed as much as possible • 25% felt it should be observed strictly • 15% said it should be used as a reference • 10% said it should be ignored if more than 5 years old McCarthy, Weafer & Loughrey. Irish views on death and dying: a national survey. J Med Ethics, 2010; 36:454-458.

  20. More Assumptions • Patients prefer to make autonomous decisions about the specific treatments they receive • Patient treatment preferences are stable • Providers are comfortable in having treatment decision-making discussions • Providers are able to judge when it is appropriate to initiate planning for end of life care

  21. Types of Health Care Decision-Making Flynn KE, Smith MA, Vanness D. A typology of preferences for participation in healthcare decision-making. Soc Sci Med 2006;63:1158-1169.

  22. www.advancecareplanning.ca

  23. Patient-Centred ACP • Start planning before a crisis • Ask about substitute decision-maker • Allow several visits for discussion with patient and proxy • First visit: overview and provide printed material • Second visit: help patient to define reasonable treatment outcomes in specific functional terms

  24. Patient-Centred ACP • Define patient’s tolerance in terms of care she has already experienced (e.g. ICU) • Avoid asking what to do if the patient’s heart or lungs stop working because a valid answer required more understanding than most patients have • Revisit ACP in light of significant life events and changes in health status Perkins HS. Time to move advance care planning beyond advance directives. Chest 2000; 117:1228-1231.

  25. Starting the Conversation • I share your hope and will work hard to keep you going as long as possible can…but bad things can happen. I don’t think you want to leave all of the responsibility for deciding about treatments to your family members if you suddenly become very sick.” • “Let’s take a few minutes to talk about some decisions that are best made in advance” Hansen-Flaschen (2004)

  26. http://decisionaid.ohri.ca/decaids.html#copd

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