Transcript Preoccupation with DNRs: Effective Limits Advance Care

Preoccupation with DNRs:
Expanding the limits of
Advance Care Planning
John G. Carney, Vice President
Aging and End of Life
National Kidney Foundation
and Missouri Kidney Program
Tuesday, May 19, 2009
Kauffman Center,
Kansas City, MO
Objectives
1. Historical Review of ACP in U.S. and
major shifts from legal to social models in
last 30 years.
2. Integrating clinical decision making with
patient goal setting – professional and
ethical obligations
Objectives
3. Emerging research begins questioning
benefits of aggressive care for those living
with advanced disease.
4. Unique construction of ESRD benefit and
its impact on advance care planning.
Objectives
• Moving away from legal transactional
approach to communications approach
• Recognitions that this ACP is dynamic
process not static
• Increase in age and progression of chronic
disease affects decision making (burden)
Advance Directives
A Case of Balkanization
– Multiple AD statutes: 23 states
– Multiple statutory forms
• Single form: 17 states
• No forms: 4 states (MA, MI, NJ, OH)
– Mandatory AD forms (substantially in the following
form): 13 states
– Mandatory disclosures: 8 states
– Mandatory phrases: 9 states
– Witnessing + notarization: 3 states
– Special Institutional witnessing: 7 states
– Required triggers (terminal/PVS)
Present Trends & Challenges
1. Simplification/consolidation (de-legalizing) of advance
directive law.
–
21 States -- AL*, AZ, CA, CT, DE*, FL, HI*, KY, ME*, MD, MN,
MS*, NJ, NM*, OK, OR, TN, VA, VT WV, WY*
* Modeled to some extent on UHCDA
2. Preference for & support of appointment of a proxy.
–
–
Proxy trumps LW and guardian
In drafting, address scope of proxy’s discretion
3. Changing advance planning from a form to process
–
Avoid mandatory forms or language
4. More social prompts & tools for advance planning
–
–
Driver’s license notice
Registries
Present Trends & Challenges
5. More non-judicial pathways for decision-making/dispute
resolution.
–
e.g. ethics committees.
–
“Unbefriended” – research needed
6. Possible rethinking of substituted judgment.
7. Translating patient care goals/wishes into the language
of the health care system.
–
POLST and out-of-hospital DNR protocols.
DNR Protocol limits
• Transition to DNR is understandable but
insufficient
• DNR too often interpreted as Do Not
Respond
• CPR is not the only life sustaining
treatment
• Palliative care objectives not achieved
when limited to discussions on acute
intervention
Aging Population
• Rising median age of dialysis population
>50% over 65 yrs old
• > 79,000 dialysis patients die per year
• ~20% die after decision to withdraw
• High percentage with comorbidities
• High in-hospital death-63%*
* United States Renal Data System 2001-2002 cohort
9
High Symptom Burden
•
•
•
•
HD patients median # of symptoms=9
Pain in over 50%
Associated with impaired HRQoL
Associated with depression
Weisbord, et al. JASN 2005:16:2487-2494
Patient’s Concerns
Regarding End-of-Life Care
•
•
•
•
•
Adequate pain and symptom control
Avoiding inappropriate prolongation of dying
Achieving a sense of control
Relieving burden on loved ones
Strengthening relationships with loved ones
Singer PA, et al. JAMA 1999; 281:163-168.
Relevance to ESRD
• Shortened life expectancy
• High symptom burden
• Aging population
ESRD Patient Probability of Survival
Patient Population
1-yr for all incident patients, unadjusted
1-yr for incident patients >65 yrs, unadjusted
2-yr for all incident patients, unadjusted
2-yr for all incident patients >65 yrs, unadj
5-yr for all incident patients, unadjusted
5-yr for incident patients >65 yrs, unadjusted
10-yr for all incident patients, unadjusted
10-yr for incident patients >65 yrs, unadjusted
USRDS, 2004 Annual Data Report
Survival (%)
79
65
65
48
38
18
20
3
Dialysis Withdrawal and Hospice Status
USRDS 2001-2002 Cohort
Dialysis Withdrawal and
Hospice Status
Deceased Patients
(N=115,239)
Percent
Mean Age in
Years
Hospice Yes
15,565
13.5
73.4 ± 11.0 *
Hospice No
99,674
86.5
68.6 ± 13.4
Withdrawal Yes
25,075
21.8
72.7 ± 11.8 **
Hospice Yes
10,518
41.9
73.9 ± 10.6
Hospice No
14,557
58.1
71.7 ± 12.3
81,624
70.8
68.0 ± 13.4
Hospice Yes
2,751
3.4
71.7 ± 11.7
Hospice No
78,873
96.6
67.9 ± 13.5
8,540
7.4
71.1 ± 13.2
Withdrawal No
Withdrawal Status
Unknown
Murray and Moss, ASN 2004
High Symptom Burden
•
•
•
•
HD patients median # of symptoms=9
Pain in over 50%
Associated with impaired HRQoL
Associated with depression
Weisbord, et al. JASN 2005:16:2487-2494
Profile of CKD patient
• Limited Life Expectancy
– Most patients with chronic kidney disease (CKD),
especially those non-candidates for transplantation,
have significantly shortened life expectancy.
– In comparison to population as a whole, dialysis
patients live about 1/3 as long as those without ESRD
of same age and sex.
• 45 % of new CKD patients have diabetes,
• Many other comorbid conditions including
hypertension, congestive heart failure, ischemic
heart disease, and peripheral vascular disease.
Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF)
http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689
Profile of CKD patient
• Lack of information and misconceptions
regarding the process of dying represent
obstacles to optimum end-of-life care and
decision making for CKD patients and their
families.
Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF)
http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689
ESRD/CKD Quality of Life
• Discordance between the life-sustaining
technology of dialysis and the burdens of the
symptoms of renal insufficiency and
comorbidities common in ESRD.
• Comorbidities insufficiently appreciated at the
outset by patients and families and incompletely
described by clinicians.
• This subgroup examined ways to better identify
factors that impact patients’ quality of life.
Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF)
http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689
Quality of Dying Subgroup
• Paucity of literature addressing the quality
of the end-of-life experience and care for
ESRD patients, particularly from the
perspectives of patients and families.
• Anecdotal information and studies suggest
that the “quality” of the dying experience
among dialysis patients is less than
optimal.
Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF)
http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689
Quality of Dying Subgroup
• Factors contributing to this poor experience
include:
– inadequate advance care planning;
– inadequately treated pain and other symptoms;
– insufficient attention to emotional stress of patients
and families and family dynamics;
– a general lack of patient/family/public education about
end-of-life care;
– and failure to address issues of religion, race and
cultural diversity as they relate to life completion and
closure.
Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF)
http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689
Quality of Dying continued
• No consistent policy to honor preferences
of dialysis patients who do not want to
undergo cardiopulmonary resuscitation,
• More worrisome, policies of many dialysis
units either unclear on this point or prohibit
honoring a legitimate Do Not Resuscitate
(DNR)directive from an ESRD patient.
Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF)
http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689
Education Subgroup findings
Key barrier to change – correct deficiency of
knowledge about palliative care.
– Lack of curriculum or educational materials hapters
on palliative care for ESRD patients.
– significant gaps in training programs and in
nephrologists’ knowledge, attitudes, and practice
skills in renal palliative/supportive care.
• At the root of these deficiencies in education and
practice lies a culture of denial related to dying
and death within dialysis units—one shared by
nephrologists, staff, patients and families.
Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF)
http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689
Additional Studies and Findings
• HD patients only get moderate symptom relief.
• Symptom relief often clustered (fatigue, disturbed sleep)
• Satisfaction associated with relief significantly impacts QOL
Additional Studies and Findings
• Recommendations for Addressing End-ofLife Care in ESRD
• Based on National Consensus Project for
Quality Palliative Care
• Mid-Atlantic Renal Coalition
1527 Huguenot Road
Midlothian, VA 23113
804-794-3757
[email protected]
2007 Study by RPA on advances in
palliative care for ESRD pateints
• In the 1990s, reported practices of nephrologists' end-of-life
decision-making showed much variability.
• Renal Physicians Association (RPA) and the American Society of
Nephrology (ASN) developed a clinical practice guideline on end-oflife decision-making.
• 2005 research to determine whether nephrologists' attitudes and
reported practices had changed over time
– survey responses from 296 nephrologists completing an online survey
in 2005 were compared with 318 nephrologists who completed a similar
mailed survey in 1990.
• In 2005, less variability was noted in reported practices to withhold
dialysis from a permanently unconscious patient (90% would
withhold in 2005 versus 83% who would withhold in 1990, P <
0.001)
• and to stop dialysis in a severely demented patient (53% in 2005
would stop versus 39% in 1990, P < 0.00001).
2007 Study by RPA on advances in
palliative care for ESRD patients
• Significantly more dialysis units reported written policies
on cardiopulmonary resuscitation (86% in 2005 versus
31% in 1990, P < 0.0001)
• Withdrawal of dialysis (30% in 2005 versus 15% in 1990,
P < 0.0002);
• Nephrologists were also more likely to honor a dialysis
patient's do-not-resuscitate order (83% in 2005 versus
66%, P < 0.0002)
• Consider consulting a Network ethics committee (52% in
2005 versus 39%, P < 0.001).
Nephrologists' reported practices in end-of-life care have
changed significantly over 15 years separating the two
surveys, suggesting benefit in development of clinical
practice guideline.
2007 Study by RPA on advances in
palliative care for ESRD patients
Clinical Journal of the American Society of Nephrology
New Data show
• Recent research enables us to predict more
accurately the patients for whom the burdens of
dialysis will likely outweigh the benefits.
• Dialysis decision-making should remain caseby-case.
• New nephrology guidelines helpful in decisionmaking.
• Professional integrity requires us to respect
patients’ wishes even when families want to
override them and to do no harm.
Patients who Should Not Be
Dialyzed
•
•
•
•
Those who (or by legal agent) refuse
Those with profound neurological impairment
Terminally ill from a non-renal cause
Those whose condition precludes the
technical process of dialysis
• advanced dementia and severe mental disability
RPA/ASN. Shared Decision-Making in the Appropriate
Initiation of and Withdrawal from Dialysis. 2000.
Clinical Practice Guideline on Shared
Decision-Making in the Appropriate
Initiation of and Withdrawal from Dialysis
Renal Physicians Association and American Society of Nephrology
CLINICAL PRACTICE GUIDELINE
Number 2
Washington, DC
February 2000
RPA/ASN Guideline
•
•
•
•
•
Nine recommendations
Rationale for each recommendation
25 prognostic tables
302 references
Consensus of AAKP, RPA, ASN, ANNA,
ASPN, NKF, NRAA, ESRD Forum
Recommendation No. 1: Shared
Decision-Making
• A patient-physician relationship that promotes
shared decision-making is recommended for all
patients with either ARF or ESRD.
• Shared decision-making participants should
involve at a minimum the patient and the
physician.
• If a patient lacks decision-making capacity,
decisions should involve the legal agent.
• With the patient’s consent, shared decisionmaking may include family members or friends
and other members of the renal care team.
Recommendation No. 2:
Informed Consent or Refusal
• Physicians should fully inform patients about their diagnosis,
prognosis, and all treatment options, including:
– 1) available dialysis modalities,
– 2) not starting dialysis and continuing conservative management
which should include end-of-life care,
– 3) a time-limited trial of dialysis, and
– 4) stopping dialysis and receiving end-of-life care.
• Choices among options should be made by patients or, if patients
lack decision-making capacity, their designated legal agents.
• Their decisions should be informed and voluntary.
• The renal care team, in conjunction with the primary care physician,
should insure that the patient or legal agent understands the
consequences of the decision.
Recommendation No. 3:
Estimating Prognosis
• To facilitate informed decisions about starting dialysis discussions
should occur with the patient or legal agent about life expectancy
and quality of life.
• Primary care physician or nephrologist familiar with prognostic data
should lead discussion.
• Discussions should be documented and dated.
• All patients requiring dialysis should have chances for survival
estimated, realizing imprecision of predicting patient survival.
• Estimates should be discussed with patient or legal agent, patient’s
family, and among the medical team.
• For patients with ESRD, these discussions should occur early in
course of the patient’s renal disease and continue as disease
progresses.
• For patients who experience major complications substantially
reducing survival or quality of life, discussion and/or reassessment
of treatment goals, including consideration of withdrawing dialysis
should occur.
Recommendation No. 4: Conflict
Resolution
• Initiate systematic approach for conflict resolution if
disagreement regarding benefits of dialysis between the
patient or legal agent (and those supporting the patient’s
position) and a member(s) of the renal care team occur.
• Conflicts within the renal care team or between the renal
care team and other health care providers that occur
should prompt review the shared decision-making
process for potential sources of conflict:
1) miscommunication or misunderstanding about prognosis,
2) intrapersonal or interpersonal issues, or
3) values.
• If dialysis is indicated emergently, provide while pursuing
conflict resolution, if patient or legal agent requests it.
Recommendation No. 5:
Advance Directives
• The renal care team should attempt to
obtain written advance directives from all
dialysis patients.
• These advance directives should be
honored.
Recommendation No. 6:
Withholding or Withdrawing
Dialysis
• Withhold or withdraw dialysis for patients with either ARF or ESRD
when patients:
– with decision-making capacity, who being fully informed and
making voluntary choices, refuse dialysis or request dialysis be
discontinued
– who no longer possess decision-making capacity and have
previously indicated refusal in an oral/written advance directive
– who no longer possess decision-making capacity and whose
properly appointed legal agents refuse dialysis or request that it
be discontinued
– with irreversible, profound neurological impairment such that
they lack signs of thought, sensation, purposeful behavior, and
awareness of self and environment.
Recommendation No. 7: Special
Patient Groups
• Reasonable to consider not initiating or
withdrawing dialysis for patients with ARF or
ESRD who have terminal illness from a nonrenal cause or whose medical condition
precludes the technical process of dialysis.
Recommendation No. 8: TimeLimited Trials
• For patients requiring dialysis, but who have
uncertain prognosis, or for whom consensus
cannot be reached about, consider offering a
time-limited trial of dialysis.
Recommendation No. 9:
Palliative Care
• All patients who decide to forgo dialysis or for whom
such a decision is made should be treated with
continued palliative care.
• With the patient’s consent, persons with expertise in
such care, such as hospice health care professionals,
should be involved in managing the medical,
psychosocial, and spiritual aspects of end-of-life care for
these patients.
• Patients should be offered the option of dying where they
prefer including at home with hospice care.
• Bereavement support should be offered to patients’
families.