Title: CARING THROUGH THE END: Palliative Care Along the Continuum of CKD
1CARING THROUGH THE ENDPalliative Care Along the
Continuum of CKD
Advance Care Planning and CPR
Jean Holley, M.D.University of Virginia Health
Systems, Nephrology Division
2Care Systems and Advanced Illness adapted from
J Lynn, Ann Int Med 1382003
- Most Americans now die while old and sick and
after a substantial period of disability. - The care system does not yet match our new
demographics.
Consider who, what, where, when, and how for each
patient
3Advance Care Planning (ACP)
- Process of communication among patients,
healthcare providers, families, and other
important individuals about the kind of care
considered appropriate when the patient cannot
make decisions. - - Teno, 1994
4Advance Directives -- Definitions
- AD written documents completed by a
- capable person
- Stipulates decision maker (proxy directive)
- Stipulates decisions to be made
(instruction directive) - -- specific wishes, values, goals, life
- experiences, cultural, religious
views
5Factors Influencing the Completion of Advance
Directives
- The document
- -- generic or specific
- -- treatment descriptions or health states
- -- specific situations or general preferences
- The discussion
- -- participants (family, dialysis staff, MD)
- The purpose -- intended adherence
6Responses to General Questions about ADn 52
(Holley et al, AJKD 1997)
- Yes No
- Have heard about AD 88 12
- Think AD good idea 100 ----
- Talked with family about wishes 67 33
- Talked with MD about wishes 14 86
- Have completed an AD 35 65
7Percentage of Patients Who Had Completed AD(203
51 completed some form of AD)
8Notified Designated Decision Maker by Status of
Completed Advance Directives (Ann Int Med, AJKD)
9Patients Desire for Family and Physician
Involvement in ACP (Hines et al Ann Int Med 1999)
- Percentage of Patients Choosing to Discuss ACP
- Involvement Surrogate Other Family
MD - discuss preferences 50 46
6 - include in conversations 91 88
36 - lead conversation 45 6
9 - 25 of patients wanted to lead conversations
themselves
10Conclusions
- Completion of written AD was associated with
better communication among patients and their
designated decision makers. - Placing ACP within the physician-patient
relationship may be contributing to the failure
of ACP -- a patient-centered, family-based model
is more appropriate (only 36 of patients overall
wanted to include a physician in ACP discussions).
11Patient-Staff Discussion of AD by Staff
Disciplines (Perry et al, JASN 1996, n 210)
- ave of pts with whom AD
- Discipline n Discussed
- Physician 31 38
- RN 89 25
- Technician 38 20
- Dietitian 16 4
- Social Worker 26 60
12Factors Influencing the Completion of Advance
Directives
- The document
- -- generic or specific
- -- treatment descriptions or health states
- -- specific situations or general preferences
- The discussion
- -- participants (family, dialysis staff, MD)
- The purpose -- intended adherence
13Choices for ventilation and withdrawal from
dialysis by health state and modality (Holley et
al AJN 1989)
14Percentage of Patients Discussing Specific EOL
Treatments by Completion of AD (n 400)
Holley, AJKD, 1999
15Results -- Specific EOL Treatments
- Race, gender, educational level -- no effect
- Rural region affected discussion of ventilation
only - 71/148, 48 vs 89/240, 37, p 0.03
- Discussing stopping dialysis if in permanent
coma - -- younger 55 15 yr (n 68) vs 60 16 yr (n
320) - -- on dialysis longer 67 mos vs 36 mos
- p 0.0001
16Conclusions
- Stopping dialysis is rarely considered in ACP by
chronic hemodialysis patients (31 of those who
had devoted the most attention to ACP, 8 of
those who had not completed an AD). - Encouraging patients to consider circumstances in
which they would want to stop dialysis should be
part of ACP.
17Patient and Surrogate Responses about ACP n
242 patient-surrogate pairs
- patients surrogates
- n 242 242
- oral and written AD 39 62
- discuss specific EOL Tx 64 78
- MDs might make decisions
- contradicting pt wishes 48 62
- p 0.001 for each comparison, pts vs surrogates
18Summary of Findings -- Patient and Surrogates
- Surrogates wanted less autonomy than patients
wanted to give them --- preferred written and
oral instructions more than patients (62 vs
39). - Surrogates were more likely to include physicians
in discussions of EOL issues (51 vs 37). - Surrogates were more concerned that physicians
might fail to honor patient preferences (62 vs
48).
19Summary of Findings Patients and Surrogates
- Surrogates were less likely to want to prolong
the patients life if it entailed suffering (12
vs 23). - Surrogates were more concerned about being
certain recovery was impossible before stopping
life-sustaining treatments (85 vs 77). - Patients have misconceptions about the amount of
autonomy and information their surrogates want.
20Concepts of ACP Traditional vs Contemporary
(from Singer, AJKD 199933980)
- traditional contemporary
- purpose prepare for incapacity prepare
for death - achieve control
- relieve burdens
- strengthen relat.
- focus written AD AD only 1
aspect - context physician-patient
patient-family
21Topics in End of Life Discussions
- Goals of Treatment
- Advance Directives
- DNAR Orders
- Other Life-sustaining Therapies
- Palliative Care
- Would you be surprised if this patient died
- within the next 12 months?
22Clinical Indications for Discussing End-of-Life
Care -- Urgent
- Imminent death
- Talk about wanting to die
- Inquiries about hospice or palliative care
- Recently hospitalized for severe progressive
illness - Severe suffering and poor prognosis
23Care Systems and Advanced Illness adapted from J
Lynn Ann Int Med 1382003
- Patients with end-stage organ failure generally
have a gradual physical decline punctuated by
episodes of life-threatening exacerbations and
complications. - The care plan should address both possibilities
simultaneously survival with ongoing disability
and risk for death, as well as dying during this
episode.
24Clinical Indications for Discussing End-of-Life
Care --Routine
- Discussing prognosis
- Discussing treatment with low probability of
success - Discussing hopes and fears
- Physician would not be surprised if the patient
died in 6-12 months
25Focus on Health States, not Treatments
- Under what conditions would you not want to
live? - Is it more important to you to live as long as
possible despite some suffering or to live for a
shorter time but without suffering?
26The Case for Useful Care Plans
- The failure of advance directives
- lt30 of patients have AD
- AD often are not followed by providers
- All contingencies cannot be anticipated
- gt 2/3 of those 70 yrs of age or older want CPR
- most overestimate survival after CPR
- most obtain information on CPR from television
- most do not discuss CPR with their doctors
27Survival after CPR dialysis and control
patientsMoss et al, JASN 3 1993 (n 74
dialysis, 247 controls)
28Attitudes of Patients towards CPR in Dialysis
Units (Moss et al, in press, AJKD)
- n 469 patients
- yes no
- want CPR if arrest occurs on dialysis 87 13
- patients who do not want CPR should
- have their wishes respected 92
29CPR Wishes, Effects of Television (Moss et al,
in press, AJKD)
p 0.001 p 0.03
30Representative Questions for End-of-Life
Discussions
- DNAR Orders
- If you were to die suddenly, that is, you stopped
breathing or your heart stopped, we could try to
revive you by using CPR. Are you familiar with
CPR? Have you given any thought as to whether
you would want it? - Quill
31Representative Questions for End-of-Life
Discussions
- DNAR Orders
- Given the severity of your illness, CPR would in
all likelihood be ineffective. I would recommend
that you choose not to have it, but that we
continue all potentially effective treatments.
What do you think?
Quill, 2001
32The Case for Useful Care Plans
- Failure of advance directives
- Lack of time
- Lack of communication skills
- Discomfort with subject
33The Case for Useful Care Plans
- Generally limiting aggressive care
- Wanting fully aggressive care with some limits
- Having other (unusual) priorities
34Moving Away from AD and to Inclusive General Care
Plans
- 1) Focus on information about health states and
levels of severity, not treatments - 2) Encourage discussions within the
patient-family context - 3) Increase dialysis unit staffs attention to
and comfort with ACP - 4) Include ACP in general patient care plans
Consider who, what, where, when, and how for each
patient