Donna Goodridge, RN, Ph.D.College of Nursing, University of

Saskatchewan

Conflict of InterestI have no conflicts of interest to declare.

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.”

Treatment Decision-Making 42.5% required decision making, of whom

70.3% lacked decision making capacityMajority of elderly patients lack capacity to

make decisions during end of life periodMost received care in line with preferencesMost (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.)

The Landscape of Dying1 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 awarenessGiven this anticipation, planning for a “good

death” is possible

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 375,000Assuming no increase in prevalence, 15,000 people will die in 2035 of COPD

The ChallengeCompared to people with cancer, hospitalized

patients with COPD are:More likely to receive life supportTo die in intensive care unitsTo 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.

Acute Event MortalityMyocardial

Infarction25%-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 COPD22-43% 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%

Estimation of Prognosis in COPD6 month mortality of 30-40% can be

anticipated in patients with two of the following:Baseline arterial pCO2 >45 mm HgFEV1 <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.

Common Disease Trajectories

Places of Death in Canada

Planning for Place of DeathSurveys have consistently indicated that at

least 60% of people want to die at homeFamilies of patients dying in ICUs are five

times more likely to suffer from PTSD

Challenges with Our Current Model of ACP25% of patients receive care inconsistent with

their advance directives29% of patients change their minds about life-

sustaining treatment over time30% of surrogates incorrectly interpret their

relative’s advance directive78% 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

Common Assumptions r/t ACPPatients/families are comfortable in

discussing issues related to end of life carePatients/families understand basic

information about treatment optionsPatients are able to choose preferred

treatments from a “menu” of options

Information from Media

Outcomes of CPRDespite 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 CPRSurvival to discharge was 18.9%

Ehlenbach et al. Epidemiological study of in-hospital cardiopulmonary resuscitation in the elderly. NEJM 2009;361:22-31)

Common Mind-Sets About Dying in Older AdultsNeither 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.

Public Views on Dying and Death

42% wanted his/her AD followed as much as possible

25% felt it should be observed strictly15% said it should be used as a reference10% 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.

More AssumptionsPatients prefer to make autonomous

decisions about the specific treatments they receive

Patient treatment preferences are stableProviders are comfortable in having

treatment decision-making discussionsProviders are able to judge when it is

appropriate to initiate planning for end of life care

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.

www.advancecareplanning.ca

Patient-Centred ACPStart planning before a crisisAsk about substitute decision-makerAllow several visits for discussion

with patient and proxyFirst visit: overview and provide

printed materialSecond visit: help patient to define

reasonable treatment outcomes in specific functional terms

Patient-Centred ACPDefine 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.

Starting the ConversationI 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)

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