CARING THROUGH THE END: Palliative Care Along the Continuum of CKD

1
CARING 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
2
Care 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
3
Advance 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

4
Advance 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

5
Factors 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

6
Responses 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

7
Percentage of Patients Who Had Completed AD(203
51 completed some form of AD)
8
Notified Designated Decision Maker by Status of
Completed Advance Directives (Ann Int Med, AJKD)


9
Patients 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

10
Conclusions

• 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).

11
Patient-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

12
Factors 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

13
Choices for ventilation and withdrawal from
dialysis by health state and modality (Holley et
al AJN 1989)
14
Percentage of Patients Discussing Specific EOL
Treatments by Completion of AD (n 400)
Holley, AJKD, 1999
15
Results -- 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

16
Conclusions

• 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.

17
Patient 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

18
Summary 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).

19
Summary 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.

20
Concepts 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

21
Topics 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?

22
Clinical 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

23
Care 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.

24
Clinical 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

25
Focus 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?

26
The 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

27
Survival after CPR dialysis and control
patientsMoss et al, JASN 3 1993 (n 74
dialysis, 247 controls)
28
Attitudes 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

29
CPR Wishes, Effects of Television (Moss et al,
in press, AJKD)


p 0.001 p 0.03
30
Representative 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

31
Representative 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
32
The Case for Useful Care Plans

• Failure of advance directives
• Lack of time
• Lack of communication skills
• Discomfort with subject

33
The Case for Useful Care Plans

• Generally limiting aggressive care
• Wanting fully aggressive care with some limits
• Having other (unusual) priorities

34
Moving 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