Why the Nephrology Community Should  Care  about End-of-Life Care Alvin H. Moss, MD Center for Health Ethics and Law Secti...
A Role for Palliative Care The patient is a 56 year old female with ESRD from Type I DM who was admitted from the NH with ...
A Role for Palliative Care She is incontinent of urine and has severe difficulties with constipation. She is unable to wal...
A Role for Palliative Care The patient had been in the hospital one week earlier for a cholecystectomy. On this admission,...
Objectives <ul><li>Explain why end-of-life care is especially appropriate for dialysis patients; </li></ul><ul><li>Define ...
ESRD End-of-Life Demographics <ul><li>Rising median age of dialysis population </li></ul><ul><li> 48% > 65 yrs old </li><...
ESRD Peer Work Group of Robert Wood Johnson Foundation “Most patients with ESRD, especially those who are not candidates f...
Expected Remaining Years of Life For 1996 Dialysis Populations 1.7 1.7 2 2.1 85+ 2.9 2.7 3.7 3.5 70-74 3.9 3.7 5.3 5.2 60-...
Expected remaining lifetimes (years),  by age, gender, & race Table 8.1, period prevalent patients, 1999
ESRD Patient Probability of Survival USRDS,  2002 Annual Data Report 9 10-yr for all incident patients, unadjusted 33 5-yr...
USRDS 1995 -- Life Expectancy Among Selected Chronic Diseases
Expected remaining lifetimes in patients with increasing morbidity, by age  figure 9.25, chronic kidney disease & diabetes...
Frequency of Death in Dialysis Units <ul><li>Average of 17 deaths per dialysis unit/yr </li></ul><ul><li>78% of units with...
Reasons for Withdrawal <ul><li>Unacceptable quality of life (failure to thrive) </li></ul><ul><li>Acute complication </li>...
Symptoms during Last 24 Hours N=79 Cohen et al.  AJKD , 2000;36:140-144 13 Nausea 14 Dysphagia 14 Diarrhea 20 Fever 25 Dys...
Aspects of Palliative Care <ul><li>Pain and symptom management </li></ul><ul><li>Advance care planning </li></ul><ul><ul><...
Definition Palliative care is comprehensive, interdisciplinary care of patients and families facing a chronic or terminal ...
Hospice Palliative Care Curative / Remissive Therapy Start Dialysis Death
Would you be surprised if the patient died in the next year?
Advances in End-of-Life Care <ul><li>Better management of chronic cancer pain </li></ul><ul><li>Improved management of oth...
End-of-Life Choice If you had to choose between being kept alive as long as possible even if you were experiencing pain & ...
Patient’s Concerns Regarding End-of-Life Care <ul><li>Receiving adequate pain and symptom control </li></ul><ul><li>Avoidi...
Top 5 Attributes of a Good Death <ul><li>Freedom from pain </li></ul><ul><li>At peace with God </li></ul><ul><li>Presence ...
Major Components of a Good Death  <ul><li>Pain and symptom management </li></ul><ul><li>Clear decision making </li></ul><u...
RPA/ASN Statement on Quality Care at the End of Life Recommendations 1. All members of the renal health care team includin...
RPA/ASN Statement on Quality Care at the End of Life 2. In responding to an ESRD patient/surrogate decision to forgo dialy...
RPA/ASN Statement on Quality Care at the End of Life 3. After a decision is made to forgo dialysis, the renal team should ...
RPA/ASN Statement on Quality Care at the End of Life 4. Nephrologists and other members of the renal team should obtain ed...
RPA/ASN Statement on Quality Care at the End of Life 5. Dialysis facilities should develop protocols, policies, and/or pro...
RPA/ASN Statement on Quality Care at the End of Life 6. Nephrologists should explicitly include in their advance care plan...
Robert Wood Johnson Foundation ESRD Peer Workgroup Recommendations to the Field
The workgroup created an education subgroup because they believed that lack of knowledge was a key barrier to change in th...
Methodology  of the Education Subgroup <ul><li>A review of the literature, including identification of articles, book chap...
Methodology  of the Education Subgroup <ul><li>Identification of the intended audience for end-of-life care educational in...
Findings  of the Education Subgroup <ul><li>A lack of ESRD specific books or chapters on palliative care </li></ul><ul><li...
Renal EPEC <ul><li>Gaps in End-of-Life Care </li></ul><ul><li>Communicating Bad News </li></ul><ul><li>Advance Care Planni...
ESRD Peer Workgroup <ul><li>Alvin H. Moss, MD, Chair </li></ul><ul><li>Barbara Campbell, MSW  </li></ul><ul><li>Lewis M. C...
Recommendations from  the ESRD Peer Workgroup <ul><li>Centers for Medicare and Medicaid Services </li></ul><ul><li>Governm...
Recommendations from  the ESRD Peer Workgroup <ul><li>NIH, NIDDK </li></ul><ul><li>In their annual reports, USRDS should p...
Recommendations from  the ESRD Peer Workgroup <ul><li>ESRD Networks </li></ul><ul><li>ESRD Networks should, as part of the...
Recommendations from  the ESRD Peer Workgroup <ul><li>Dialysis Units </li></ul><ul><li>Dialysis units should educate patie...
Recommendations from  the ESRD Peer Workgroup <ul><li>Dialysis Units </li></ul><ul><li>Dialysis units should support the d...
Recommendations from  the ESRD Peer Workgroup <ul><li>Nephrology health care professionals   </li></ul><ul><li>Nephrologis...
Recommendations from  the ESRD Peer Workgroup <ul><li>Nephrology health care professionals </li></ul><ul><li>Nephrologists...
Robert Wood Johnson Foundation ESRD Peer Workgroup Report www.promotingexcellence.org/esrd/
Components of a  Renal Palliative Care Program <ul><li>A Palliative Care Focus </li></ul><ul><ul><li>-Educational activiti...
Conclusions <ul><li>Because of shortened life expectancy, end-of-life care is particularly relevant for ESRD pts.  </li></...
Take-Home Message Because of the nature of ESRD,  end-of-life care  needs to be  part of the  continuum  of  quality  pati...
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Why the Nephrology Community Should Care about End-of-Life Care

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  • 10/20/10 Actual Question: “Please tell me how serious each of the following issues is in your community.” Drug &amp; Alcohol Abuse - as age and household incomes increase, the seriousness of drug &amp; alcohol abuse decrease. The seriousness of this issue is greatest among those living in the state less than 20 years. It is less serious to retirees and “persuadables” of the New Approach. Keeping Children in School – as household income increases, seriousness increases. The drop-out rate is more serious to those between the age of 35-44, those living in WV less than 20 years, United Way contributors, and those that oppose the New Approach. It is seen less serious to those over the age of 55, those without a high school degree and retirees. Access to Health Care – this issue is felt more serious among those between the age of 45-54, and United Way contributors. It is less serious to those over the age of 55, those without a high school education, retirees, and those opposing the New Approach. Crime – the seriousness of crime was highest among those between the age of 45-55, college graduates, retirees, those living in WV less than 20 years, those with household income over $50,000, and those opposing the New Approach. It is less serious to Putnam County residents.
  • Why the Nephrology Community Should Care about End-of-Life Care

    1. 1. Why the Nephrology Community Should Care about End-of-Life Care Alvin H. Moss, MD Center for Health Ethics and Law Section of Nephrology West Virginia University
    2. 2. A Role for Palliative Care The patient is a 56 year old female with ESRD from Type I DM who was admitted from the NH with altered mental status occurring over the preceding 24 hours. The patient has been on dialysis for three years and is transported by ambulance for her treatments. Her other medical problems include retinopathy with limited vision, CVA with left hemiplegia, and peripheral vascular disease with bilateral LE amputations.
    3. 3. A Role for Palliative Care She is incontinent of urine and has severe difficulties with constipation. She is unable to walk or transfer herself from chair to stretcher. The patient is noncompliant with diet and meds. Her serum albumin is 2.2. She is listed as a full code. The patient sometimes cries during hemodialysis treatments, especially when asked questions. She admits she is depressed. Her memory is relatively good but she has problems with expressive aphasia, and her behavior during dialysis treatments is sometimes inappropriate.
    4. 4. A Role for Palliative Care The patient had been in the hospital one week earlier for a cholecystectomy. On this admission, an MRI of the brain showed chronic microvascular ischemic changes with volume loss and an acute infarct in the left parietal-occipital region. She also developed fever with leukocytosis, and an abdominal CT scan revealed fluid in the gallbladder fossa and a possible fistulous tract in the RLQ; surgery thought she was not a surgical candidate. The patient now lacks decision-making capacity, but she has completed a living will and medical power of attorney. She is grimacing in pain. What should be done?
    5. 5. Objectives <ul><li>Explain why end-of-life care is especially appropriate for dialysis patients; </li></ul><ul><li>Define palliative care and its role for dialysis patients; </li></ul><ul><li>Discuss the RPA/ASN Statement on Quality Care at the End of Life; and </li></ul><ul><li>Describe the recommendations of the RWJF ESRD Peer Workgroup on End-of-Life Care. </li></ul>At the completion of this talk, participants should be able to:
    6. 6. ESRD End-of-Life Demographics <ul><li>Rising median age of dialysis population </li></ul><ul><li> 48% > 65 yrs old </li></ul><ul><li>Over 72,000 dialysis patients die per year </li></ul><ul><li>~20% die after decision to withdraw </li></ul><ul><li>High percentage with comorbidities </li></ul><ul><li>High in-hospital death (61% in one study) </li></ul><ul><li>Unknown but low % die with hospice </li></ul>
    7. 7. 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.”
    8. 8. Expected Remaining Years of Life For 1996 Dialysis Populations 1.7 1.7 2 2.1 85+ 2.9 2.7 3.7 3.5 70-74 3.9 3.7 5.3 5.2 60-64 5.2 5.2 7.1 7.3 50-54 7.1 6.9 9.8 10 40-44 9.3 9.4 12.5 12.7 30-34 13 14 15.9 16.8 20-24 White Female White Male Black Female Black Male Age
    9. 9. Expected remaining lifetimes (years), by age, gender, & race Table 8.1, period prevalent patients, 1999
    10. 10. ESRD Patient Probability of Survival USRDS, 2002 Annual Data Report 9 10-yr for all incident patients, unadjusted 33 5-yr for all incident patients, unadjusted 18 5-yr for incident patients >65 yrs, unadj 3 10-yr for incident patients >65 yrs, unadj 48 2-yr for all incident patients >65 yrs, unadj 63 2-yr for all incident patients, unadjusted 66 1-yr for incident patients >65 yrs, unadjust 78 1-yr for all incident patients, unadjusted Survival (%) Patient Population
    11. 11. USRDS 1995 -- Life Expectancy Among Selected Chronic Diseases
    12. 12. Expected remaining lifetimes in patients with increasing morbidity, by age figure 9.25, chronic kidney disease & diabetes, prevalent dialysis patients, 2000
    13. 13. Frequency of Death in Dialysis Units <ul><li>Average of 17 deaths per dialysis unit/yr </li></ul><ul><li>78% of units withdrew at least 1 patient (1990) </li></ul><ul><li>Mean # withdrawn: 3 (0-20) </li></ul><ul><li>Most nephrologists withdraw at least one patient/yr </li></ul><ul><li>Mean # withdrawn/nephrologist/yr: 3 (0-10) (1995) </li></ul>
    14. 14. Reasons for Withdrawal <ul><li>Unacceptable quality of life (failure to thrive) </li></ul><ul><li>Acute complication </li></ul><ul><li>Dementia </li></ul><ul><li>Stroke </li></ul><ul><li>Cancer </li></ul><ul><li>Other </li></ul>
    15. 15. Symptoms during Last 24 Hours N=79 Cohen et al. AJKD , 2000;36:140-144 13 Nausea 14 Dysphagia 14 Diarrhea 20 Fever 25 Dyspnea/agonal breathing 28 Myoclonus/twitching 30 Agitation 42 Pain % present Symptom
    16. 16. Aspects of Palliative Care <ul><li>Pain and symptom management </li></ul><ul><li>Advance care planning </li></ul><ul><ul><li>DNR </li></ul></ul><ul><ul><li>Advance Directives </li></ul></ul><ul><li>Psychosocial and spiritual support </li></ul>
    17. 17. Definition Palliative care is comprehensive, interdisciplinary care of patients and families facing a chronic or terminal illness focusing primarily on comfort and support. Billings JA. Palliative Care. Recent Advances. BMJ 2000:321:555-558.
    18. 18. Hospice Palliative Care Curative / Remissive Therapy Start Dialysis Death
    19. 19. Would you be surprised if the patient died in the next year?
    20. 20. Advances in End-of-Life Care <ul><li>Better management of chronic cancer pain </li></ul><ul><li>Improved management of other symptoms </li></ul><ul><li>Increasing use of advance care planning </li></ul><ul><li>Improved understanding of the role of artificial hydration and nutrition for dying patients </li></ul><ul><li>General consensus on the acceptability of withholding and withdrawing life support </li></ul>Billings JA. BMJ 2000;321:555-558
    21. 21. End-of-Life Choice If you had to choose between being kept alive as long as possible even if you were experiencing pain & suffering or living a shorter time to avoid pain… and being put on machines, which would you pick? * Follow-up Phase Only
    22. 22. Patient’s Concerns Regarding End-of-Life Care <ul><li>Receiving adequate pain and symptom control </li></ul><ul><li>Avoiding inappropriate prolongation of dying </li></ul><ul><li>Achieving a sense of control </li></ul><ul><li>Relieving burden on loved ones </li></ul><ul><li>Strengthening relationships with loved ones </li></ul>Singer PA, et al. Quality end-of-life care: patients’ perspectives. JAMA 1999; 281:163-168.
    23. 23. Top 5 Attributes of a Good Death <ul><li>Freedom from pain </li></ul><ul><li>At peace with God </li></ul><ul><li>Presence of family </li></ul><ul><li>Mental awareness </li></ul><ul><li>Treatment choices followed </li></ul>Steinhauser, et al. Factors considered important at the end of life by patients, family, physicians, and other health care providers. JAMA 2000:284:2476-2482.
    24. 24. Major Components of a Good Death <ul><li>Pain and symptom management </li></ul><ul><li>Clear decision making </li></ul><ul><li>Preparation for death </li></ul><ul><li>Life Completion </li></ul><ul><li>Contributing to others </li></ul><ul><li>Affirmation of the whole person </li></ul>Steinhauser. Ann Intern Med 2000;132:825-832.
    25. 25. RPA/ASN Statement on Quality Care at the End of Life Recommendations 1. All members of the renal health care team including nephrologists, nephrology nurses, nephrology social workers, and renal dietitians should obtain education and skills in the principles of palliative care to ensure that ESRD patients and families receive multidimensional, compassionate, and competent care at the end of life.
    26. 26. RPA/ASN Statement on Quality Care at the End of Life 2. In responding to an ESRD patient/surrogate decision to forgo dialysis, the nephrologist is obligated to determine, if possible, why the patient/surrogate has decided to forgo dialysis … Once the nephrologist is satisfied that the patient’s decision to forgo dialysis is informed and uncoerced, the nephrologist should respect the wishes of the patient/surrogate.
    27. 27. RPA/ASN Statement on Quality Care at the End of Life 3. After a decision is made to forgo dialysis, the renal team should refer the patient to a hospice or adopt a palliative care approach to patient care. In either case, the nephrologist and other members of the renal team should remain active in the patient’s care to maintain continuity of relationships and treatment.
    28. 28. RPA/ASN Statement on Quality Care at the End of Life 4. Nephrologists and other members of the renal team should obtain education and skills in advance care planning so that they are comfortable addressing end-of-life issues with their patients.
    29. 29. RPA/ASN Statement on Quality Care at the End of Life 5. Dialysis facilities should develop protocols, policies, and/or programs to ensure that advance care planning is conducted with their patients.
    30. 30. 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.
    31. 31. Robert Wood Johnson Foundation ESRD Peer Workgroup Recommendations to the Field
    32. 32. The workgroup created an education subgroup because they believed that lack of knowledge was a key barrier to change in the dialysis community. Knowledge in palliative care was felt to be very limited among nephrologists, trainees, dialysis staff, and patients and their families. Beyond a lack of specific knowledge, it was felt there is a culture of death denial in dialysis units that needed to be addressed.
    33. 33. Methodology of the Education Subgroup <ul><li>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;” </li></ul><ul><li>Consensus among the group based on expert opinion; </li></ul><ul><li>Informal surveys of nephrology colleagues and of the nephrology training programs; and </li></ul>
    34. 34. Methodology of the Education Subgroup <ul><li>Identification of the intended audience for end-of-life care educational interventions: </li></ul><ul><li> Nephrologists, fellows, nurses, social workers, dietitians, and others </li></ul><ul><li> Government agencies responsible for ESRD including CMS; </li></ul><ul><li> Corporations owning multiple dialysis units; </li></ul><ul><li> Individual dialysis units; and </li></ul><ul><li> Patients and families </li></ul>
    35. 35. Findings of the Education Subgroup <ul><li>A lack of ESRD specific books or chapters on palliative care </li></ul><ul><li>A gap in the curriculum for nephrology training programs </li></ul><ul><li>A culture of denial in dialysis units among nephrologists, staff, patients and families </li></ul><ul><li>The need for a modification of the EPEC program for nephrologists </li></ul>
    36. 36. Renal EPEC <ul><li>Gaps in End-of-Life Care </li></ul><ul><li>Communicating Bad News </li></ul><ul><li>Advance Care Planning </li></ul><ul><li>Pain Management </li></ul><ul><li>Common Physical Symptoms </li></ul><ul><li>Incorporating End-of-Life Care into Your Dialysis Unit </li></ul>
    37. 37. ESRD Peer Workgroup <ul><li>Alvin H. Moss, MD, Chair </li></ul><ul><li>Barbara Campbell, MSW </li></ul><ul><li>Lewis M. Cohen, MD </li></ul><ul><li>William R. Coleman, Esq. </li></ul><ul><li>Helen Danko, RN, CNN </li></ul><ul><li>Richard Dart, MD </li></ul><ul><li>Lesley Dinwiddie, MSN, RN </li></ul><ul><li>Michael Germain, MD </li></ul><ul><li>Cathy Greenquist, RN </li></ul><ul><li>Jean Holley, MD </li></ul><ul><li>Paul Kimmel, MD </li></ul><ul><li>Karren King, MSW </li></ul><ul><li>Jenny Kitsen </li></ul><ul><li>Lori Lambert, MS, RD, CDE </li></ul><ul><li>John E. Leggat, Jr., MD </li></ul><ul><li>Sharon McCarthy, RN, FNP </li></ul><ul><li>John Newmann, PhD, MPH </li></ul><ul><li>Marilyn Pattison, MD </li></ul><ul><li>Erica Perry, MSW </li></ul><ul><li>Susan Pfettscher, DNSc, RN </li></ul><ul><li>David Poppel, MD, </li></ul><ul><li>M. Abed Sekkarie, MD </li></ul><ul><li>Dale Singer, MHA </li></ul><ul><li>Richard Swartz, MD </li></ul>
    38. 38. Recommendations from the ESRD Peer Workgroup <ul><li>Centers for Medicare and Medicaid Services </li></ul><ul><li>Governmental policy makers should update &quot;Conditions of Participation&quot; for dialysis units to include requirements for advance care planning and the provision of palliative care. </li></ul><ul><li>CMS should collect data on hospice utilization on the 2746 form. </li></ul>
    39. 39. Recommendations from the ESRD Peer Workgroup <ul><li>NIH, NIDDK </li></ul><ul><li>In their annual reports, USRDS should provide more data on deaths, including when dialysis is withdrawn and hospice utilization. </li></ul>
    40. 40. Recommendations from the ESRD Peer Workgroup <ul><li>ESRD Networks </li></ul><ul><li>ESRD Networks should, as part of their educational outreach efforts, incorporate end-of-life care/palliative care concepts into their educational programs. </li></ul><ul><li>ESRD Networks should conduct educational sessions for dialysis providers on the medical, ethical, and legal issues surrounding CPR in the dialysis unit. </li></ul>
    41. 41. Recommendations from the ESRD Peer Workgroup <ul><li>Dialysis Units </li></ul><ul><li>Dialysis units should educate patients/families about end-of-life care. </li></ul><ul><li>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. </li></ul><ul><li>Dialysis units should adopt policies regarding CPR in the dialysis unit that respect patients’ rights of self-determination, including the right to refuse CPR. </li></ul>
    42. 42. Recommendations from the ESRD Peer Workgroup <ul><li>Dialysis Units </li></ul><ul><li>Dialysis units should support the development of peer mentoring in their facilities. </li></ul><ul><li>Dialysis units should implement bereavement programs. </li></ul>
    43. 43. Recommendations from the ESRD Peer Workgroup <ul><li>Nephrology health care professionals </li></ul><ul><li>Nephrologists and other members of the renal care team need to incorporate effective interventions into practice in individual dialysis units to enhance ESRD patient QOL. </li></ul>
    44. 44. Recommendations from the ESRD Peer Workgroup <ul><li>Nephrology health care professionals </li></ul><ul><li>Nephrologists and other members of the renal care team should refer dying ESRD patients to hospice and/or adopt a palliative care approach to their management. </li></ul>
    45. 45. Robert Wood Johnson Foundation ESRD Peer Workgroup Report www.promotingexcellence.org/esrd/
    46. 46. Components of a Renal Palliative Care Program <ul><li>A Palliative Care Focus </li></ul><ul><ul><li>-Educational activities (in-services) </li></ul></ul><ul><ul><li>-QI activities (M & M conferences) </li></ul></ul><ul><ul><li>-“Would you be surprised…?” </li></ul></ul><ul><li>Pain & Sx Assessment & Management Protocols </li></ul><ul><li>Systematized Advance Care Planning </li></ul><ul><li>Psychosocial and Spiritual Support (peer counselors) </li></ul><ul><li>Terminal Care Protocol (includes hospice) </li></ul><ul><li>Bereavement Program (includes memorial service) </li></ul>
    47. 47. Conclusions <ul><li>Because of shortened life expectancy, end-of-life care is particularly relevant for ESRD pts. </li></ul><ul><li>Palliative care offers the treatment most pts and families want but is a new way of thinking. </li></ul><ul><li>The knowledge and skills to provide palliative care for ESRD patients are available but not in widespread use. </li></ul>
    48. 48. 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.
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