Transcript Coordination of Hospice and Palliative Care in ESRD

End-of-Life Decision-Making and
the Role of the Nephrology Nurse
Coordination of Hospice and
Palliative Care in ESRD
Module 4
Developed by ANNA and the
Kidney End-of-Life Coalition
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.
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
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
Association Between Symptoms and Quality of
Life Measures
Source4
Age of Prevalent ESRD Patients
120000
100000
0-9
10-19
80000
20-29
30-39
40-49
60000
50-59
60-69
40000
70-79
80+
20000
0
2005
Source5 (Table B.1)
2006
2007
2008
High Mortality Rate
•
•
•
•
•
Annual rate (23%) or > 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
Life Expectancy – ESRD Patients
Patient Population
Survival (%)
1-yr for all incident patients, unadjusted
80.4
2-yr for all incident patients, unadjusted
67.8
5-yr for all incident patients, unadjusted
39.8
10-yr for all incident patients, unadjusted
19.9
Sources5 (Table I)
Survival Rates for Cancer and ESRD Patients
• Survival rates are lower for ESRD than for cancer
patients.
80.0%
70.0%
60.0%
50.0%
40.0%
Cancer
30.0%
ESRD
20.0%
10.0%
0.0%
2 Year
Source7
5 Year
10 Year
Predictors of Poor Prognosis for ESRD Patients
•
•
•
•
Age
Functional ability
Nutritional status
Comorbid illnesses (e.g. DM, MI, CHF)
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 < 40)
• Severe chronic malnutrition (e.g. serum albumin
level < 2.5 g/dL using the bromcresol green method)
Charleston Comorbidity Index (CCI)
1 point
MI, CHF, PVD, CVA,
Dementia, COPD, PUD,
Mild liver disease
2 points
Mod-severe CKD, CA w/o mets
DM with end-organ damage
3 points
Mod-severe liver disease
6 points
Metastatic solid CA
AIDS
1 point
Each decade in age > 40 years
Prognosis from CCI
Low score
Mod Score
High Score
Very High Score
CCI Points
≤3
4-5
6-7
≥8
Mortality (per pt-yr)
0.03
0.13
0.27
0.49
Source8
Other Prognostic Indicators for Increased
Mortality Risk
•
•
•
•
•
•
•
•
•
•
•
•
•
Elevated C- Reactive Protein levels
Low BMI < 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
Underutilization of Hospice in ESRD
• 2009 Dialysis Deaths
Patients
Number (%)
Number (%) Using
Hospice
Withdrew from
Dialysis
20,854 (26)
13,502 (65)
Continued
Dialysis
59,032 (74)
3,410 (6)
TOTAL
79,886 (100)
16,912 (21)
Source9
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
What is the Medicare Hospice Benefit (MHB)?
• Medicare Benefit Policy Manual
Chapter 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 individual’s 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
Medicare Hospice Benefit, con’t
• Medicare Benefit Policy Manual
Chapter 11, End Stage Renal Disease
– 50.6.1 – Home Health and Hospice Benefits Available for ESRD
Beneficiaries:
“Medicare 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 Benefit:
“If the patient’s 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.”
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
aren’t related to the patient’s terminal illness
– Patient receives care from a Medicare-approved hospice
program
Hospice Certification
• The written certification must include:
1. The statement that the individual’s medical prognosis is
that their life expectancy is 6 months or less if the
terminal illness runs its normal course;
2. Specific clinical findings and other documentation
supporting a life expectancy of six months or less; and
3. Signatures of the attending physician and hospice
medical director
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 < 10 ml/min (15 for DM)
• Serum creatinine > 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
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
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 beneficiary’s 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
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 patient’s
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 facility’s policy regarding advance directives
Source13
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 individual’s 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 patient’s attending physician
are included under nursing care
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
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 patient’s nephrologist
• Dialysis goals change from optimum care to control
of symptoms (usually 1-2 treatments per week)
What are the barriers to providing hospice care
for kidney patients?
1. Lack of education by hospices, nephrologists, renal
healthcare team, patients and families
2. Cost of care
3. Confusion regarding the differences between
palliative care and hospice services
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
Barrier: Lack of Education, con’t
• 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 facility’s 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
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 patient’s
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 – it’s the patient’s 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
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
Barrier: Palliative Care vs. Hospice Care, con’t
• 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
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
Model of Quality of Life
• Well-being: physical, psychological, social and spiritual
Physical
Functional Ability
Strength/Fatigue
Sleep & 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
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 patient’s 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
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
Two (2) Roads to Death
Confused
Tremulous
Restless
Hallucinations
Normal
Mumbling Delirium
Sleepy
Myoclonic Jerks
Lethargic
THE USUAL
ROAD
THE DIFFICULT
ROAD
Seizures
Obtunded
Semicomatose
Comatose
Death
Following the Five “Cs”
1.
2.
3.
4.
5.
Competence
Collegiality
Communication
Continuity of Care
Compassion
“Focus discussion on not if, but rather when to switch
from restorative/invasive care to palliation.”
Source18
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
Educational Resources
• Kidney End-of-Life Coalition Website
www.kidneyeol.org
• RPA/ASN’s “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
References
1.
2.
3.
4.
5.
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. 2005;16:2487-2494.
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.
2006;69(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. 2003;42(4):713-721.
U.S. Renal Data System, USRDS 2010 Annual Data Report: Atlas of Chronic Kidney Disease and EndStage 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.
6.
7.
8.
9.
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.pdf. 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 outcomes
and costs in dialysis patients. Am J Med. 2000;108:609-613.
Standard Information Management System [Network database]. Midlothian, VA: Mid-Atlantic Renal
Coalition; 2010.
References
10. 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.
11. Medicare Benefit Policy Manual. Baltimore, MD: Centers for Medicare & Medicaid Services; 2010.
Publication 100-02.
12. Medicare Claims Processing Manual. Baltimore, MD: Centers for Medicare & Medicaid Services; 2010.
Publication 100-04.
13. 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.
14. 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/serveflash.php?libname=anna&sessionID=317. Accessed
September 10, 2010.
15. 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.
16. 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. 2008;3:1379-1384.
17. 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.
18. Ronco C. Do Not Dialyze. Int J Artif Organs. 2006;29(11):1021-1022.
19. End-Stage Renal Disease Workgroup. Recommendations to the Field. Promoting Excellence in End-of-Life
Care, The Robert Wood Johnson Foundation. Missoula, MT; 2002.