donna goodridge, rn, ph.d. college of nursing, university of saskatchewan
TRANSCRIPT
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