No Slide Title - Promoting Excellence in End-of-Life Care.ppt by censhunay

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									    Delivering Palliative Care
to End-Stage Renal Disease Patients


          Alvin H. Moss, MD
    Center for Health Ethics and Law
         Section of Nephrology
        West Virginia University


                                       1
                      Objectives
At the completion of this call, participants should be able to:

   Describe the special relevance of end-of-life care for chronic
    kidney failure patients ;
   Explain the barriers to making end-of-life care more
    available to chronic kidney disease patients; and
   Discuss the recommendations of the Robert Wood Johnson
    Foundation Promoting Excellence ESRD Peer Work for
    improving end-of-life care for dialysis patients.


                                                                  2
ESRD End-of-Life Demographics
 Rising median age of dialysis population
     48% > 65 yrs old
 Over 72,000 dialysis patients die per year
 ~20% die after decision to withdraw
 High percentage with comorbidities
 High in-hospital death (61% in one study)
 Unknown but low % die with hospice

                                               3
      ESRD Peer Work Group
of Robert Wood Johnson Foundation

“Most patients with ESRD, especially those who
are not candidates for renal transplantation, have a
significantly shortened life expectancy.”




                                                       4
Expected Remaining Years of Life
  For 1996 Dialysis Populations
 Age     Black    Black   White    White
         Male    Female   Male    Female
 20-24    16.8     15.9    14       13
 30-34    12.7     12.5    9.4      9.3
 40-44     10       9.8    6.9      7.1
 50-54    7.3       7.1    5.2      5.2
 60-64    5.2       5.3    3.7      3.9
 70-74    3.5       3.7    2.7      2.9
  85+     2.1        2     1.7      1.7 5
ESRD Patient Probability of Survival
              Patient Population                Survival (%)
1-yr for all incident patients, unadjusted           78
1-yr for incident patients >65 yrs, unadjust         66
2-yr for all incident patients, unadjusted           63
2-yr for all incident patients >65 yrs, unadj        48
5-yr for all incident patients, unadjusted           33
5-yr for incident patients >65 yrs, unadj           18
10-yr for all incident patients, unadjusted          9
10-yr for incident patients >65 yrs, unadj           3

         USRDS, 2002 Annual Data Report                    6
   USRDS 1995 -- Life Expectancy Among
       Selected Chronic Diseases
                    29.9
             30
             25
                                          21.6
             20
est remaining                                           US residents
              15
      yrs            9.6                       9.8      colon cancer
             10                                         ESRD
                       6.9                      5.3
              5
                           2.7                    2.6   lung cancer
              0
                   45-54                55-64
                                 patient age


                                                                       7
                                     Expected remaining lifetimes in patients with
                                            increasing morbidity, by age
                                      figure 9.25, chronic kidney disease & diabetes,
                                              prevalent dialysis patients, 2000


                                                          Dialysis
                                                          General Medicare: CKD, DM
Exp. remaining lifetime (yrs)




                                20
                                                          General Medicare: CKD, NDM
                                15                        General Medicare: No CKD, DM
                                                          General Medicare: No CKD, NDM
                                10

                                5

                                0
                                           65-74              75-84                       85+

                                                                                                8
Frequency of Death in Dialysis Units

 Average  of 17 deaths per dialysis unit/yr
 78% of units withdrew at least 1 patient (1990)
 Mean # withdrawn: 3 (0-20)
 Most nephrologists withdraw at least one
  patient/yr
 Mean # withdrawn/nephrologist/yr: 3 (0-10)
  (1995)
                                                    9
     Reasons for Withdrawal
 Unacceptable   quality of life (failure to
  thrive)
 Acute complication
 Dementia
 Stroke
 Cancer
 Other                                    10
   Symptoms during Last 24 Hours
                       N=79
        Symptom                    % present
Pain                                  42
Agitation                             30
Myoclonus/twitching                   28
Dyspnea/agonal breathing              25
Fever                                 20
Diarrhea                              14
Dysphagia                             14
Nausea                                13

          Cohen et al. AJKD, 2000;36:140-144   11
                     Barriers
 Lack of education, especially of nephrologists
 Unwillingness of dialysis corporations to respect
  dialysis patients’ preference for DNR order
 Patient/family denial of permanent nature of ESRD
 Lack of patient awareness of life-limiting nature of
  ESRD resulting in many not wanting to discuss end-
  of-life issues
                                                   12
 RPA/ASN Statement on Quality Care at
           the End of Life
6. Nephrologists should explicitly include in their
advance care planning…information about the
outcomes of CPR for patients with ESRD and a
discussion of patients’ preferences regarding CPR if
cardiac arrest were to occur while patients are
undergoing …dialysis… The RPA/ASN encourages
dialysis facilities to develop policies and procedures
for respecting the wishes of dialysis patients with
regard to CPR in … the dialysis unit.
                                                   13
Robert Wood Johnson Foundation
    ESRD Peer Workgroup
 Recommendations to the Field


                             14
               Methodology
        of the Education Subgroup
   A review of the literature, including identification of
    articles, book chapters, and the extensive evidenced-
    based literature search by the RPA/ASN committee
    that drafted “Shared Decision-Making in the
    Appropriate Initiation of and Withdrawal from
    Dialysis;”
   Consensus among the group based on expert opinion;
   Informal surveys of nephrology colleagues and of the
    nephrology training programs; and

                                                          15
                Findings
       of the Education Subgroup
   A lack of ESRD specific books or chapters on
    palliative care
   A gap in the curriculum for nephrology
    training programs
   A culture of denial in dialysis units among
    nephrologists, staff, patients and families
   The need for a modification of the EPEC
    program for nephrologists
                                                   16
            Survey Results
    Second Year Nephrology Fellows

Assessment of Medical Education
      in End-of-Life Care
        Survey conducted April 2002
          173 fellows participated
             63% response rate
                                      17
                    Demographics
    Nephrology fellows compared to other specialties
                    Geriatrics   Critical Care   Nephrology
N                   188          96              173
Response Rate       64%          87% of          63%
                                 audience, 9%
                                 nationally
Male                45%          74%             67%
Average Age                      NA
White               46%          64%             46%
Christian           38%          46%             38%
FMG                 53%          NA              43%
Social/ Emotional   26%          66%             73%
                                                          18
                Exposure to Palliative Care

                                   Geriatrics   Critical   Nephrology
                                                Care
Completed a Rotation Focused on       71%          2%          1%
Palliative Care
Had Contact with Palliative Care      80%         46%          45%
Specialist
Quality of teaching with respect      53%         34%          15%
to end-of-life care rated ‘very
good’ or ‘excellent’




                                                                    19
              Teaching and Preparedness of Nephrology Fellows
         to manage Patients on dialysis, with RTA, and at the end-of-life


   Hemodialysis                          Distal RTA                     End-of-Life Care

100%                           100%                                 100%
       Teaching                             Teaching                 90%
90%                              90%                                             Teaching
       Preparedness                         Preparedness
80%                              80%                                 80%         Preparedness
70%                              70%                                 70%

60%                              60%                                 60%

50%                              50%                                 50%

40%                              40%                                 40%

30%                              30%                                 30%

20%                              20%                                 20%

10%                              10%                                 10%

 0%                               0%                                  0%
       0-3   4-7      8-10                0-3     4-7    8-10                  0-3      4-7      8-10
                                                                                                   20
       0 = no teaching or completely unprepared, 10 = a lot of teaching or completely prepared
                                               Figure 2



  During your fellowship, were you explicitly taught to:


  Determine when to refer to hospice

  Respond to request to stop dialysis

Help with reconciliation and goodbyes

Assess and manage depression at eol

           Tell patient he/she is dying

                            Treat pain

                                          0%    10%   20%   30%   40%   50%   60%   70%   80%    90%   100%

                                               % fellows who received explicit teaching on topic


                                                                                                21
            Comparison of Experience of Nephrology Fellows
            Renal Biopsies Performed with Observation versus Family Meetings


               Renal Biopsies Performed
                                                                           Family Meetings Conducted
                                                                    100%
            100%
            90%                                                     90%
                      Biopsies Performed
                                                                                   Family Meetings Conducted
            80%                                                     80%
                      Biopsies Performed While
            70%       Observed                                      70%            Family Meetings Conducted




                                                        % fellows
% fellows




            60%                                                     60%            While Observed

            50%                                                     50%
            40%                                                     40%
            30%
                                                                    30%
            20%
                                                                    20%
            10%
                                                                    10%
             0%
                   never     1-2   3-6     7-10   >10                0%
                           # biopsies performed                            never     1-2    3-6   7-10    >10

                                                                            # family meetings performed
                                                                                                         22
      Amount of Training to Manage a
              Dying Patient
                Geriatrics
                Pulmonary/ Critical Care
60%             Nephrology
50%

40%

30%

20%

10%

0%
         0-3               4-7                 8-10
       0=No Training               10=A Lot of Training
                                                      23
            Renal EPEC
 Why  Talk about End-of-Life Care in ESRD
 Communicating Bad News
 Advance Care Planning
 Pain Management
 Common Physical Symptoms
 Incorporating End-of-Life Care into Your
  Dialysis Unit

                                             24
        ESRD Peer Workgroup

Alvin H. Moss, MD, Chair    Jenny Kitsen
Barbara Campbell, MSW       Lori Lambert, MS, RD, CDE
Lewis M. Cohen, MD          John E. Leggat, Jr., MD
William R. Coleman, Esq.    Sharon McCarthy, RN, FNP
Helen Danko, RN, CNN        John Newmann, PhD, MPH
Richard Dart, MD            Marilyn Pattison, MD
Lesley Dinwiddie, MSN, RN   Erica Perry, MSW
Michael Germain, MD         Susan Pfettscher, DNSc, RN
Cathy Greenquist, RN        David Poppel, MD,
Jean Holley, MD             M. Abed Sekkarie, MD
Paul Kimmel, MD             Dale Singer, MHA
Karren King, MSW            Richard Swartz, MD
                                                         25
         Recommendations from
       the ESRD Peer Workgroup
Centers for Medicare and Medicaid Services
 Governmental   policy makers should update
  "Conditions of Participation" for dialysis units to
  include requirements for advance care planning
  and the provision of palliative care.
 CMS should collect data on hospice utilization
  on the 2746 form.


                                                    26
         Recommendations from
       the ESRD Peer Workgroup
Centers for Medicare and Medicaid Services
 Allow application of Medicare hospice benefit
  to ESRD patients certified to be terminally ill
  but who choose to continue dialysis
 Improve coordination and linkage of dialysis
  and hospice care for ESRD patients

                                              27
          Recommendations from
        the ESRD Peer Workgroup
                   Dialysis Units
 Dialysis units should educate patients/families about
  end-of-life care.
 Dialysis units should institute palliative care programs
  that include pain and symptom management, advance
  care planning, and psychosocial and spiritual support
  for patients and families.
 Dialysis units should adopt policies regarding CPR in
  the dialysis unit that respect patients’ rights of self-
  determination, including the right to refuse CPR.
                                                             28
        Recommendations from
      the ESRD Peer Workgroup
               Dialysis Units
 Dialysis units should support the development of
  peer mentoring in their facilities.
 Dialysis units should implement bereavement
  programs.



                                                 29
        Recommendations from
      the ESRD Peer Workgroup
Nephrology health care professionals

 Nephrologistsand other members of the renal
 care team should refer dying ESRD patients to
 hospice and/or adopt a palliative care approach
 to their management.



                                                   30
Robert Wood Johnson Foundation
 ESRD Peer Workgroup Report



  www.promotingexcellence.org/esrd/



                                      31
                Conclusions

 Because   of shortened life expectancy, end-of-life
  care is particularly relevant for ESRD pts.
 The knowledge and skills to provide palliative
  care for ESRD patients are available but not in
  widespread use.
 The recommendations in the RWJF ESRD
  Workgroup report provide a “road map” for
  improving end-of-life care for ESRD patients.

                                                  32
 Take-Home Message
Because of the nature of ESRD,
end-of-life care needs to be
   part of the continuum of
    quality patient care
      for ESRD patients.
                                 33

								
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