End-of-Life Decision-Making and the Role of the Nephrology

1
Coordination of Hospice and Palliative Care in
ESRD
End-of-Life Decision-Making and the Role of the
Nephrology Nurse

• Module 4
• Developed by ANNA and the
• Kidney End-of-Life Coalition

2
Objectives

• List three (3) factors associated with the need
  for providing hospice care to kidney patients.
• Describe the Medicare Hospice Benefit, including
  the requirements for ESRD patients to receive
  hospice care.
• Identify three (3) barriers to providing hospice
  care for kidney patients.

3
Why is hospice care relevant to ESRD?

• 1. High symptom burden of ESRD
• Aging population
• Shortened life expectancy/high mortality rate
• Multiple comorbidities
• 2. Poor prognosis of some elderly stage 4 and 5
  chronic kidney disease patients
• Significant cognitive impairment
• 3. Underutilization of hospice in ESRD
• High discontinuation of dialysis rate (26 in US)
• Poor quality of death

4
High Symptom Burden of ESRD

• HD patients median number of symptoms 9
• Pain in over 50
• Associated with impaired Health Related Quality
  of Life (HRQoL)
• Associated with depression

Source1
5
Association Between Symptoms and Quality of Life
Measures
Source4
6
Age of Prevalent ESRD Patients
Source5 (Table B.1)
7
High Mortality Rate

• Annual rate (23) or gt 70,000 deaths
• 16 37 life expectancy (age and sex matches)
• 8 CPR survival to hospital discharge
• High in-hospital deaths
• High percentage of co-morbidities

Source6
8
Life Expectancy ESRD Patients
Sources5 (Table I)
9
Survival Rates for Cancer and ESRD Patients

• Survival rates are lower for ESRD than for cancer
  patients.

Source7
10
Predictors of Poor Prognosis for ESRD Patients

• Age
• Functional ability
• Nutritional status
• Comorbid illnesses (e.g. DM, MI, CHF)

11
Increased Risk Factors for Older Patient Deaths

• Advanced age in elderly patients (aged 75 years
  or greater)
• Patients with high comorbidity scores (e.g.
  modified Charleston Mobility score of 8 or
  greater)
• Marked functional impairment (e.g. Karnofsky
  performance status score lt 40)
• Severe chronic malnutrition (e.g. serum albumin
  level lt 2.5 g/dL using the bromcresol green
  method)

12
Charleston Comorbidity Index (CCI)
Prognosis from CCI
Source8
13
Other Prognostic Indicators for Increased
Mortality Risk

• Elevated C- Reactive Protein levels
• Low BMI lt 18.5, undernourished, cachexic
  appearance
• Increased Protein Catabolic Rate (PCR)
• Elevated Malnutrition Inflammation Score (MIS)
• Subjective Global Assessment of Nutritional
  Status (Baker Detsky)
• Low cholesterol
• Low serum phosphorus
• Low Vitamin D levels
• Decreased skinfold measurements
• Elevated troponin, BNP
• Low BP
• Use of a central venous catheter for dialysis
  access
• Poor functional status walking, transferring
  ,ADLs etc

14
Underutilization of Hospice in ESRD

• 2009 Dialysis Deaths

Source9
15
Benefits of Hospice in ESRD

• Hospice services reduce the number of
  hospitalizations initiated by end-of-life events
• Reduces end-of-life costs per patient
• Patients are afforded the option of living and
  dying at home. Among patients who withdrew
• 11 of those not receiving hospice care died at
  home
• 45 of those receiving hospice care died at home

Source10
16
What is the Medicare Hospice Benefit (MHB)?

• Medicare Benefit Policy ManualChapter 9
  Coverage of Hospice Services Under Hospital
  Insurance
• 10 Requirements General Hospice care is a
  benefit under the hospital insurance program. To
  be eligible to elect hospice care under Medicare,
  an individual must be entitled to Part A Medicare
  and be certified as terminally ill. An individual
  is considered to be terminally ill if the medical
  prognosis is that the individuals life
  expectancy is six months or less if the illness
  runs its normal course Medical services for
  a condition completely unrelated to the terminal
  condition for which hospice was elected remain
  available to the patient if he or she is eligible
  for such care.

Source11
17
Medicare Hospice Benefit, cont

• Medicare Benefit Policy ManualChapter 11, End
  Stage Renal Disease
• 50.6.1 Home Health and Hospice Benefits
  Available for ESRD BeneficiariesMedicare
  beneficiaries can receive care under both the
  ESRD benefit and the home health or hospice
  benefits. The key is whether or not the services
  are related to ESRD.
• 50.6.1.4 Coverage Under Hospice BenefitIf
  the patients terminal condition is not related
  to ESRD, the patient may receive covered services
  under both the ESRD benefit and the hospice
  benefit. A patient does not need to stop dialysis
  treatment to receive care under the hospice
  benefit. Consequently, hospice agencies can
  provide hospice services to patients who wish to
  continue dialysis treatment.

18
Eligibility for the MHB

• Eligibility for the MHB requires all of the
  following conditions are met
• Patient is eligible for Medicare Part A (hospital
  insurance)
• The attending physician and the hospice medical
  director certify that the patient is terminally
  ill (6 months or less to live if the illness runs
  its normal course)
• Patient signs a statement choosing hospice care
  instead of other Medicare-covered benefits to
  treat their terminal illness Note Medicare will
  still pay for covered benefits for any health
  problems that arent related to the patients
  terminal illness
• Patient receives care from a Medicare-approved
  hospice program

19
Hospice Certification

• The written certification must include
• The statement that the individuals medical
  prognosis is that their life expectancy is 6
  months or less if the terminal illness runs its
  normal course
• Specific clinical findings and other
  documentation supporting a life expectancy of six
  months or less and
• Signatures of the attending physician and hospice
  medical director

20
ESRD as a Terminal Diagnosis for Hospice

• ESRD may be used as a terminal diagnosis if
• The patient is not seeking dialysis or
  transplant and
• Cr clearance lt 10 ml/min (15 for DM)
• Serum creatinine gt 8 (6 for DM)
• Signs/symptoms of renal failure
• Or, the hospice provider agrees to be responsible
  for the cost of the dialysis treatments, should
  the patient wish to continue with dialysis

21
Some Facts about Hospice Care

• Hospice is given in periods of care
• Patients can get hospice care for two, 90-day
  periods followed by an unlimited number of 60-day
  periods
• At the start of each period of care, the hospice
  medical director or other hospice doctor must
  recertify that the patient is terminally ill to
  continue hospice care
• Hospices are paid a per diem rate based on the
  number of days and level of care provided during
  the election period. Levels of care are defined
  as
• Routine Home Care
• Continuous Home Care
• Inpatient Respite Care
• General Inpatient Care

Source12
22
Discharge from Hospice

• Discharge from hospice will occur as a result of
  one of the following
• The beneficiary decides to revoke the hospice
  benefit
• The beneficiary moves away from the geographic
  area that the hospice defines in its policies as
  its service area
• The beneficiary transfers to another hospice
• The beneficiarys condition improves and he/she
  is no longer considered terminally ill. In this
  situation, the hospice will be unable to
  recertify the patient.
• The beneficiary dies

23
Patient Rights

• Patients have the right to change providers only
  once during each period of care
• Patients have the right to ask for a review of
  their case if they are found to not be eligible
  for further hospice care because of improvement
  in their condition
• The hospice provider should give notice
  explaining the patients right to an expedited
  review by an independent reviewer hired by
  Medicare, called a Quality Improvement
  Organization (QIO)
• Conditions for Coverage for ESRD Facilities,
  Subpart C Patient Care 494.70, (a) Standard
  Patients Rights
• (6) The patient has a right to be informed about
  his or her right to execute advance directives
  and the facilitys policy regarding advance
  directives

Source13
24
Nursing Guidelines

• ANNA Standard of Care (page 128)
• The patient and family will receive guidance
  with advance care planning. The patient will
  receive appropriate pain and symptom management,
  and psychological and spiritual support
  throughout the chronic kidney disease and dying
  experience.
• Role of the APN
• Cannot certify terminal illness to initiate
  hospice
• Can be designated as attending if patient
  requests them to and can bill for services
  provided
• A nurse practitioner (NP) serving as an attending
  physician should participate as a member of the
  interdisciplinary group that establishes and/or
  updates the individuals plan of care. The NP may
  not serve as or replace the medical director or
  physician designee.
• Services provided by an NP who is not the
  patients attending physician are included under
  nursing care

25
ESRD Scenarios for Hospice Referral

• ESRD patient with terminal lung cancer still
  benefitting from and wishing to continue dialysis
• ESRD patient with end stage heart failure who
  wishes to continue dialysis
• ESRD patient who wishes to withdraw from dialysis
• ESRD patient with a gangrenous foot who wishes
  continued dialysis but no surgery

26
Contracting with Dialysis Providers and Hospice

• If the hospice plan includes palliative dialysis,
  the hospice company will negotiate a rate to
  reimburse the dialysis center from their payment
  from Medicare at an unbundled rate of the
  Medicare allowable
• The plan is developed with the patient, hospice
  provider and patients nephrologist
• Dialysis goals change from optimum care to
  control of symptoms (usually 1-2 treatments per
  week)

27
What are the barriers to providing hospice care
for kidney patients?

• Lack of education by hospices, nephrologists,
  renal healthcare team, patients and families
• Cost of care
• Confusion regarding the differences between
  palliative care and hospice services

28
Barrier Lack of Education

• Hospice providers
• May be unaware that dialysis treatments may be a
  part of the palliative care plan
• May be unaware that patients can receive hospice
  and dialysis benefits simultaneously under
  specific circumstances
• Nephrologists
• May need more education about how to introduce
  end-of-life care discussions and assist
  patients/families in making decisions
• May not understand what hospice services are
  available or how to make referrals
• Do not routinely refer patients to hospice when
  they choose to withdraw from dialysis

29
Barrier Lack of Education, cont

• Renal Health Care Team
• Lack of confidence in discussing end-of-life
  issues with dialysis patients (social workers are
  generally more knowledgeable than nurses or
  managers)
• Lack of knowledge about referral process and
  rules for referral
• Fear of bringing down dialysis facilitys
  outcomes measures
• Patients and Families
• Usually welcome beginning conversation about
  preferences for care in advance of condition
  deterioration
• May have difficulty accepting a terminal
  diagnosis, necessitating early discussions
• May be unaware of benefits of palliative care and
  hospice

30
Barrier Cost of Care

• Potential cost barriers include
• Hospice providers may choose not to cover the
  cost of the dialysis treatment if the patient is
  not eligible for the MHB
• Families may be financially dependent on the
  patients income and do not wish the patient to
  stop dialysis
• Payment depends on ESRD diagnosis
• If the patient has a non-ESRD diagnosis as a
  reason for hospice referral, the patient may
  continue dialysis and be on hospice at the same
  time its the patients choice
• If the patient has no other diagnosis for hospice
  referral, other than ESRD, or his/her terminal
  diagnosis is a direct result of the ESRD, then
  the hospice would have to pay for the dialysis
  treatment from their per diem reimbursement

31
Barrier Palliative Care vs. Hospice Care

• Palliative care
• The goal of palliative care is to prevent and
  relieve suffering and to support the best
  possible quality of life for patients and their
  families, regardless of their stage of disease or
  the need for other therapies, in accordance with
  their values and preferences. The patient does
  not have to have a prognosis of 6 months or less
  to live.
• Elements of palliative care include
• Continuous pain and symptom assessment and
  control
• Psychosocial and spiritual support to the family

32
Barrier Palliative Care vs. Hospice Care, cont

• Hospice Care
• The goal of hospice care is to provide pain and
  symptom management to the patient who, by
  certification of two physicians, has 6 months or
  less to live, if the disease runs its normal
  course.
• Elements of hospice care include
• Nursing services
• Hospice aide service
• Psychosocial, spiritual and bereavement support

33
Palliative Care Adjustments

• Review and adjust dialysis medications (i.e. hold
  ESA, IV Iron, Vitamin D Analogs)
• No lab draws unless requested by hospice
  physician for management of a specific symptom
• Schedule dialysis to limit fluid overload

34
Model of Quality of Life

• Well-being physical, psychological, social and
  spiritual

Physical Functional Ability Strength/Fatigue Slee
p Rest Nausea Appetite Constipation Pain
Psychological Anxiety Depression Enjoyment/Leisure
Pain Distress Happiness Fear Cognition/Attention
Quality of Life
Social Financial Burden Caregiver Burden Roles
and Relationships Affection/Sexual
Function Appearance
Spiritual Hope Suffering Meaning of
Pain Religiosity Transcendence
35
Identifying Patients At Risk to Die in 6-12 Months

• The Surprise Question Would I be surprised if
  this patient dies in the next year?
• Estimate of prognosis is based upon patients
  age, functional status, medical condition,
  including comorbidity and recent sentinel events,
  and this surprise question
• Surprise question prognostic tool is available
  online http//touchcalc.com/calculators/sq
• There is not the same degree of precision of
  tools to estimate prognosis for patients with AKI

• Sources16, 17

36
Clinical performance measures for quality care
for dying dialysis patients

• Estimate of prognosis
• Patient designation of a healthcare agent
• Completion of an end-of-life care plan, including
  preferences for life-sustaining treatments and
  preferred site of death
• Pain and symptom assessment and management
• Timely referral to hospice

37
Two (2) Roads to Death
THE DIFFICULT ROAD
Confused
Tremulous
Restless
Hallucinations
Normal
Mumbling Delirium
Sleepy
Myoclonic Jerks
Lethargic
Seizures
Obtunded
THE USUAL ROAD
Semicomatose
Comatose
Death
38
Following the Five Cs

• Competence
• Collegiality
• Communication
• Continuity of Care
• Compassion
• Focus discussion on not if, but rather when to
  switch from restorative/invasive care to
  palliation.

Source18
39
Remember

• Care of ESRD patients on dialysis requires
  expertise not only in the medical maintenance of
  patients on dialysis but also in the palliative
  care that focuses on management of pain and other
  symptoms, advance care planning and attention to
  ethical, psychosocial and spiritual issues
  related to starting, continuing withholding and
  stopping dialysis.

Source19
40
Educational Resources

• Kidney End-of-Life Coalition Websitewww.kidneyeol
  .org
• RPA/ASNs Shared Decision-Making in the
  Appropriate Initiation of and Withdrawal from
  Dialysis, 2nd Edition
• Visit www.renalmd.org to order a hard copy
• ANNA Online Professional Education
• Additional educational modules on end-of-life
  care are available at www.prolibraries.com/anna

41
References

• Weisbord S, Fried L, Arnold R et al. Prevalence,
  Severity, and Importance of Physical and
  Emotional Symptoms in Chronic Hemodialysis
  Patients. J Am Soc Nephrol. 2005162487-2494.
• Cohen LM, Levy NB, Tessier E, Germain M. Renal
  Disease. In American Psychiatric Publishing
  Textbook of Psychosomatic Medicine, Levenson J
  (ed.). American Psychiatric Publishing, Inc.
• Davison SN, Jhangri GS, Johnson JA.
  Cross-sectional validity of a modified Edmonton
  symptom assessment system in dialysis patients A
  simple assessment of symptom burden. Kidney Int.
  200669(9)1621-1625.
• Kimmel P, Emont P, Newmann J, Danko H, Moss A.
  ESRD patient quality of life symptoms, spiritual
  beliefs, psychosocial factors, and ethnicity. Am
  J Kidney Dis. 200342(4)713-721.
• U.S. Renal Data System, USRDS 2010 Annual Data
  Report Atlas of Chronic Kidney Disease and
  End-Stage Renal Disease in the United States,
  National Institutes of Health, National Institute
  of Diabetes and Digestive and Kidney Diseases,
  Bethesda, MD, 2010.The data reported here have
  been supplied by the United States Renal Data
  System (USRDS). The interpretation and reporting
  of these data are the responsibility of the
  author(s) and in no way should be seen as an
  official policy or interpretation of the U.S.
  government.
• Cohen, L, Davis, M. Did this patient die with
  hospice? New questions in caring for patients
  with ESRD PowerPoint. February 28, 2006.
  Available at http//www.kidneyeol.org/DavisPPT.pd
  f. Accessed September 10, 2010.
• Moss, A. Relevance of Palliative Care and Hospice
  for Dialysis Patients PowerPoint. January 20,
  2010. Available at http//www.kidneyeol.org/Moss_
  1-20-10.pdf. Accessed September 10, 2010.
• Beddhu S, Bruns FJ, Saul M, Seddon P, Zeidel ML.
  A simple comorbidity scale predicts clinical
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  Med. 2000108609-613.
• Standard Information Management System Network
  database. Midlothian, VA Mid-Atlantic Renal
  Coalition 2010.

42
References

• Schmidt, R. Hospice in ESRD To Withdraw or Not
  To Withdraw PowerPoint. October 2005. Available
  at http//www.kidneyeol.org/SchmidtPPT.pdf.
  Accessed September 10, 2010.
• Medicare Benefit Policy Manual. Baltimore, MD
  Centers for Medicare Medicaid Services 2010.
  Publication 100-02.
• Medicare Claims Processing Manual. Baltimore,
  MD Centers for Medicare Medicaid Services
  2010. Publication 100-04.
• Conditions for Coverage for End-Stage Renal
  Disease Facilities. Baltimore, MD Centers for
  Medicare Medicaid Services, US Dept of Health
  and Human Services 2008. Vol. 73, No. 73.
• American Nephrology Nurses Association.
  End-of-Life Decision-Making and the Role of the
  Nephrology Team PowerPoint. 2004. Available at
  http//www.prolibraries.com/library/flash/servefla
  sh.php?libnameannasessionID317. Accessed
  September 10, 2010.
• Renal Physicians Association/American Society of
  Nephrology Working Group. Clinical Practice
  Guideline on Shared Decision-Making in the
  Appropriate Initiation of and Withdrawal from
  Dialysis, 2nd Edition. Rockville, MD 2010.
• Moss A, Ganjoo J, Sharma S et. al. Utility of the
  Surprise Question to Identify Dialysis Patients
  with High Mortality. Clin J Am Soc Nephrol.
  200831379-1384.
• Cohen LM, Ruthhazer R, Moss AH, Germain MJ.
  Predicting Six-Month Mortality for Patients who
  are on Maintenance Hemodialysis. Clin J Am Soc
  Nephrol. 2009, Dec 3.
• Ronco C. Do Not Dialyze. Int J Artif Organs.
  200629(11)1021-1022.
• End-Stage Renal Disease Workgroup.
  Recommendations to the Field. Promoting
  Excellence in End-of-Life Care, The Robert Wood
  Johnson Foundation. Missoula, MT 2002.