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Palliative Care for the ESRD

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  • Hospice is a subset of palliative care – Palliative care is the discipline, hospice is a way of delivering palliative care to patients who are acknowledged to be dying and to their families. In the US, hospice care is most often delivered in the home.
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    • 1. Palliative Care for the ESRD Patient Alvin H. Moss, MD Center for Health Ethics and Law Section of Nephrology West Virginia University
    • 2. Palliative Care End-of-Life/ Hospice Care Relationship between Palliative Care and EOLC
    • 3. 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.
    • 4. Palliative Care Approach
      • Pain and symptom management
      • Communication-Advance care planning
        • DNR
        • Advance Directives
      • Psychosocial and spiritual support
      • Hospice referral
    • 5. Hospice Palliative Care Curative / Remissive Therapy Start Dialysis Death
    • 6. Patient’s Concerns Regarding End-of-Life Care
      • Receiving 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.
    • 7. Relevance to ESRD
      • Shortened life expectancy
      • High symptom burden
      • Aging population
    • 8. ESRD Patient Probability of Survival USRDS, 2004 Annual Data Report 20 10-yr for all incident patients, unadjusted 38 5-yr for all incident patients, unadjusted 18 5-yr for incident patients >65 yrs, unadjusted 3 10-yr for incident patients >65 yrs, unadjusted 48 2-yr for all incident patients >65 yrs, unadj 65 2-yr for all incident patients, unadjusted 65 1-yr for incident patients >65 yrs, unadjusted 79 1-yr for all incident patients, unadjusted Survival (%) Patient Population
    • 9. Data from USRDS and NCI
    • 10. 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
    • 11. Weisbord, JASN 2005;16:2487-2494
    • 12. Association Between Symptoms and Quality of Life Measures Total Score Note: All results statistically significant, p values <.01 Kimmel, et al. AJKD 2003
    • 13. Aging Population
      • Rising median age of dialysis population
      • >50% over 65 yrs old
      • Over 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
    • 14. Would you be surprised if the patient died in the next year?
    • 15. Performance of “Surprise” Question in ESRD* *Values are mean ± SD or % 0.072 24/6 76/94 90/10 White/Non-white 0.134 44/56 58/42 55/45 Male/Female 0.004 3.7±0.42 3.9±0.27 3.8±0.3 Serum Albumin 0.483 11.9±0.87 12.1±1.2 12.0±1.1 Hb (g/dL) 0.540 1.48±0.26 1.45±0.28 1.5±0.3 Kt/V <0.001 75.1±9.8 63.4±16.2 65.9±15.8 Age (yrs) <0.001 58.8±16.3 84.0±13.7 78.7±17.6 Karnofsky Performance Status 0.007 3.8±3.6 2.2±3.0 2.5±3.2 Pain VAS Score <0.001 7.3±1.9 5.7±2.2 6.0±2.3 CCI Score 0.052 6.1±2.0 6.8±2.1 6.7±2.1 McGill QOL Question P value &quot;No&quot; (N=36) &quot;Yes&quot; (N=130) All (N=166) Prognostic Factor
    • 16. Incorporating Palliative Care into Your Dialysis Unit
      • Surprise question on rounds
      • Educational in-services on palliative care topics
      • Advance care planning
      • Pain & symptom assessment and treatment protocols
      • Communication of prognosis and changes in condition
      • Referral to hospice when terminally ill
      • QI with review of quality of death
      • Memorial service
    • 17. Dialysis Withdrawal and Hospice Status of Deceased Patients USRDS 2001-2002 Cohort Murray and Moss, ASN 2004 71.1 ± 13.2 7.4 8,540 Withdrawal Status Unknown 67.9 ± 13.5 96.6 78,873 Hospice No 71.7 ± 11.7 3.4 2,751 Hospice Yes 68.0 ± 13.4 70.8 81,624 Withdrawal No 71.7 ± 12.3 58.1 14,557 Hospice No 73.9 ± 10.6 41.9 10,518 Hospice Yes 72.7 ± 11.8 ** 21.8 25,075 Withdrawal Yes 68.6 ± 13.4 86.5 99,674 Hospice No 73.4 ± 11.0 * 13.5 15,565 Hospice Yes Mean Age in Years Percent Deceased Patients (N=115,239) Dialysis Withdrawal and Hospice Status
    • 18. Death After Dialysis Withdrawal: Are Patients Appropriate for Hospice? 1 - 46 8.2 days 126 2000 Cohen et al 0 - 150 12 days 60 1998 Sekkarie & Moss 1 - 29 8.1 days 155 1986 Neu & Kjellstrand Range Mean N Year Study
    • 19. Ethical and Legal Issues Alvin H. Moss, MD Center for Health Ethics and Law Section of Nephrology West Virginia University
    • 20. Objectives
      • Present the recommendations of the RPA/ASN on when it is appropriate to withhold and stop dialysis
      • Discuss the ethical justifications
      • Analyze 3 cases of dialysis patients at the end of life in which decision-making is challenging
    • 21. A Recent Case in Point Mrs. G is a 78 year old woman was referred by her primary MD for evaluation of CKD with worsening function. She had a 20 year history of DM complicated by PVD, requiring toe amputation. She had multiple other comorbid illnesses including hypertension, cryptogenic cirrhosis with liver failure, pancytopenia, CHF, and a history of massive GI bleeding from esophageal varices a year ago.
    • 22. A Recent Case in Point The patient required assistance with all ADL except feeding and was residing in a NH. She had only a sister whom she named her medical power of attorney representative. She had decision-making capacity. Lab data revealed an estimated GFR of 15 ml/min, and a serum albumin of 2.8 mg/dl. It was obvious she would progress to ESRD soon. The patient made it clear that despite her poor prognosis, she wanted hemodialysis when needed.
    • 23. When should we not start? When should we stop?
    • 24. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis Clinical Practice Guideline #2
    • 25. Clinical Practice Guideline (CPG) A systematically developed statement to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances (IOM).
    • 26. 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
    • 27. How Recommendations Were Developed?
      • The working group formulated specific guideline recommendations taking into account…
        • Ethical principles
        • Case and statutory law
        • Research
      • Peer review by stakeholders
    • 28. Ethical Principles
      • Respect for patient autonomy
      • Beneficence
      • Nonmaleficence
      • Justice
      • Professional integrity
    • 29. Topics to be Considered in Ethical Analysis
      • Medical Indications
      • Patient Preferences
      • Quality of Life
      • Contextual Features
      Jonsen, Siegler, Winslade. Clinical Ethics, 5 th ed.2002
    • 30. Medical Indications Diagnostic and therapeutic interventions (e.g., dialysis) are deemed to be indicated if the expected medical benefits justify the risks.
    • 31. Recommendation #1: Shared Decision-Making A patient-physician relationship that promotes shared decision-making is recommended for all patients with either ARF or ESRD. Participants in shared decision-making 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 decision-making may include family members or friends and other members of the renal care team.
    • 32. Recommendation #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…
    • 33. Recommendation #3 Estimating Prognosis To facilitate informed decisions about starting dialysis for either ARF or ESRD, discussions should occur with the patient or legal agent about life expectancy and quality of life.… All patients requiring dialysis should have their chances for survival estimated, with the realization that the ability to predict survival in the individual patient is difficult and imprecise. The estimates should be discussed with the patient or legal agent, patient’s family, and among the medical team.
    • 34. Predictors of Poor Prognosis for ESRD Patients
      • Age
      • Functional ability
      • Nutritional status
      • Comorbid Illnesses - diabetes, MI, PVD
      RPA/ASN. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. 2000.
    • 35. Nutritional Status
      • Serum albumin < 3.5 g/dL ≈ 50% 1 yr mortality
      • Serum albumin < 2.5 g/dL vs > 4.0 g/dL confers 7.45 greater risk of early death
      RPA/ASN. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. 2000.
    • 36. Indicators of Poor Prognosis
      • Severe functional impairment confers 3.46 times greater risk of early death
      • Acute MI associated with 60% 1 yr mortality
      • AKA associated with 73% 1 yr mortality
      RPA/ASN. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. 2000.
    • 37.  
    • 38.  
    • 39. Charlson Comorbidity Index Beddhu et at. Am J Med 2000;108:609-613 Each decade in age > 40 years 1 point AIDS Metastatic solid CA 6 points Mod-severe liver disease 3 points DM with end-organ damage Mod-severe CKD, CA w/o mets 2 points Mild liver disease Dementia, COPD, PUD, MI, CHF, PVD, CVA, 1 point
    • 40. Calculated CCI for Mrs. G Age correction (3 decades older than 40 yrs) 3 points 12 points Total Severe liver disease 3 points Severe kidney disease 2 points Diabetes with end-organ damage 2 points Peripheral Vascular Disease 1 point Congestive Heart Failure 1 point
    • 41. Prognosis from CCI 0.49 0.27 0.13 0.03 Mortality (per pt-yr) = or >8 6-7 4-5 < or =3 CCI Points Very High Score High Score Mod Score Low score
    • 42. Who Should Not Be Dialyzed
      • Patients (legal agents) who refuse dialysis
      • Patients with profound neurological impairment
      • Patients terminally ill from a non-renal cause
      • Patients 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.
    • 43. Possible Recommendations to Mrs. G
      • Start dialysis without any limitations
      • Time-limited trial of dialysis
      • Refuse to start dialysis
    • 44. Recommendation #8 Time-Limited Trials For patients requiring dialysis, but who have an uncertain prognosis, or for whom a consensus cannot be reached about providing dialysis, nephrologists should consider offering a time-limited trial of dialysis.
    • 45. The Daughter Rescinded the DNR Order A 65-year-old widow with a history of DM, hypertension, and TIA was started on HD for DN. She was cognitively intact, cooperative, compliant, and able to deal with her diagnosis of ESRD. She used the Wheelchair Van Service because she did not want to be a burden. She had family support, primarily from her daughter. Two years after starting dialysis, she signed a DNR order and a Health Care Proxy, naming her daughter. About 2 weeks later, a CT scan done for mental status changes revealed multiple areas of infarction. Subsequently, she had numerous admissions to the hospital for fluid overload. Dialysis was increased to 4 times a week. Her mental status deteriorated further, and she was transferred to a NH.
    • 46. Subsequently, she was noted to come from the NH to the dialysis facility very agitated. She would upset other patients. She became progressively problematic, and medications were tried to control her inappropriate yelling and screaming, to no avail. She was transferred to the hospital unit where she could be treated in isolation and observed more closely. She was starting to get out of her chair during treatments and pull out dialysis needles. Her daughter was repeatedly informed of her behavior, but her response was to rescind the DNR order.
    • 47. The patient’s transfer to the hospital unit angered the daughter; she did not accept that it was in the patient’s best interest. The patient became more demented. She refused to eat; she lost 60 lbs down to 70 lbs. The daughter avoided meetings to discuss long-range planning. Yet she made it clear that she did not wish to stop dialysis. She asked about a feeding tube to increase the patient’s weight. The patient had no swallowing or GI problems to justify PEG placement. The patient continued to do poorly and died 5 years after starting dialysis and 14 months after becoming incapacitated . Case Courtesy of Rocco C. Venuto, MD
    • 48. The Daughter Rescinded the DNR Order
      • Medical Indications
        • Dialysis – Recommendation No. 7 applies
        • CPR - <5% chance of survival – ESRD, strokes, dementia, malnutrition
      • Patient Preferences
        • No CPR – failure to respect patient autonomy
        • AD
          • Daughter is proxy
          • Wishes re: withdrawal of dialysis unknown
    • 49. Recommendation #7 Special Patient Groups It is reasonable to consider not initiating or withdrawing dialysis for patients with ARF or ESRD who have a terminal condition from a nonrenal cause or whose medical condition precludes the technical process of dialysis.
    • 50. Recommendation #5 Advance Directives The renal care team should attempt to obtain written advance directives from all dialysis patients. These advance directives should be honored.
    • 51. Failure of Advance Care Planning to Elicit Patients’ Preferences for Withdrawal From Dialysis Patients who had completed a living will and proxy were most likely to have discussed EOLC, but stopping dialysis was the least often discussed intervention, even in this patient subset. Sixty-nine percent had discussed MV; 55%, tube feedings; 43%, CPR; and only 31% had discussed stopping dialysis (all P < 0.001). Although withdrawal from dialysis is relatively common, it is rarely discussed in advance care planning by dialysis patients. Dialysis unit staff and nephrologists should address issues involving withdrawal from dialysis with their chronic dialysis patients. Am J Kidney Dis 1999; 33: pp 688-693
    • 52. The Daughter Rescinded the DNR Order
      • QOL
        • Multiple admissions for fluid overload
        • Agitation
        • Severe dementia with cachexia
        • Failure to thrive
    • 53. The Daughter Rescinded the DNR Order
      • Contextual
        • Daughter ethically and legally ought not override patient’s wishes
        • NY law
        • Other patients in unit – use of sitter
        • Daughter’s emotional and spiritual needs
    • 54. Emotional and Spiritual Issues “ I am convinced that what really makes these decisions ‘hard choices’ has little to do with the medical, legal, ethical, or moral aspects of the decision process. The real struggles are emotional and spiritual. People wrestle with letting go. These are decisions of the heart, not just the head.” Chaplain Hank Dunn, Hard Choices for Loving People, 4 th ed. , 2002
    • 55. Spiritual Issues in Withdrawal of Dialysis Once the treatment is no longer medically indicated, the real issue is whether the patient or family (or physician) can “let go.” “ Those who choose such life-prolonging treatments for failing patients do so primarily out of an inability to let go and not out of moral necessity or medical appropriateness.” Chaplain Hank Dunn, Hard Choices for Loving People, 4th ed .,2002
    • 56. What should you do?
      • Not allow the daughter to rescind the patient’s DNR order to respect patient autonomy
      • Require the daughter to sit with the patient during treatments
      • Ask the daughter what the mother would want if she were able to say
      • Instruct the daughter on her ethical and legal role as durable power of attorney for health care
      • Provide support to the daughter
    • 57.
      • A 78 yr old woman presented with a 3 day hx of increasing SOB due to pulmonary edema. She had CKD with a serum Cr of 12. CXR showed a large R hilar shadow suggestive of carcinoma of the lung. She received hemodialysis pending work-up. Investigations showed squamous cell carcinoma of the R lung; she was referred for radiotherapy.
      •  
      • With dialysis her dyspnea regressed, and she felt well. There were no symptoms from the carcinoma. She requested to continue dialysis so that she could visit her extended family and tidy her affairs. She said she would wish to stop dialysis once she developed symptoms from the cancer. After 7 wks of dialysis she developed dyspnea and pain related to her cancer. She withdrew from dialysis and received palliative care until her death.
      Short-term Benefit in a Terminally Ill Patient
    • 58. Reasons to Dialyze Terminally Ill Patients
      • Short-term benefit for competent patient
      • Time-limited trial of dialysis to help patient and family understand burdens of treatment
    • 59. There is an option for ESRD patients who choose to stop or not to start dialysis: continued palliative care.
    • 60. Recommendation #9 Palliative Care All patients who decide to forgo dialysis (or for whom such a decision is made) should receive 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.
    • 61. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis [email_address] 301.468.3515
    • 62. Robert Wood Johnson Foundation ESRD Peer Workgroup Report www.promotingexcellence.org/esrd/ Completing the Continuum of Nephrology Care
    • 63. Conclusions
      • 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 case-by-case.
      • New nephrology guidelines are helpful in decision-making.
      • Professional integrity requires us to respect patients’ wishes even when families want to override them and to do no harm.