Best Practices for End-of-life Care for Dialysis Patients
Wendy Funk Schrag, LMSW, ACSW Barbara Weaner, MSN, FNP
What we’ll talk about…
• Kidney End-of-Life coalition • Work groups • Kidney End-of-Life Coalition website (www.kidneyeol.org) • Future Plans
Kidney End-of-Life Coalition
National End of Life Issues meeting in Florida in December, 2004 sparked interest in creating a coalition to further the development of the kidney community’s education and expertise in dealing with end of life issues.
Mission Statement
To promote effective interchange between patients, families, caregivers, payers, and providers in support of integrated patient-centered end-of-life care for chronic kidney disease (CKD) patients.
Coalition: Organizations Represented
Mid-Atlantic Renal Coalition
National Hospice & Palliative Care Organization (NHPCO)
Centers for Medicare & Medicaid Services (CMS) American Nephrology Nurses’ Association (ANNA)
Renal Physicians’ Association (RPA) National Renal Administrators’ Association (NRAA) National Kidney Foundation (NKF)
DaVita Fresenius Medical Care Dialysis Clinics, Inc. VistaCare Miscellaneous Members
Forum of ESRD Networks West Virginia University American Kidney Fund (AKF) American Association of Kidney Patients (AAKP)
Coalition Activity
• • • • • June 5, 2005: First meeting Discussed several case studies Established mission statement, priorities, work groups Members shared existing resources General themes emerged
General Themes
• Healthcare providers should start thinking about palliative care (pain and symptom management, advance care planning, and support to the patient and family) as soon as the patient starts dialysis • Public understanding of death and dying needs to be improved. • More attention is needed in dialysis units on how the dialysis unit responds to a patient’s death. • State laws vary and create some problems.
Work Groups
Hospice Advance Care Planning CPR Physician Education
Hospice Work Group Issues
1. Fiscal Intermediaries and Carriers are not uniformly applying rules. 2. Some hospice organizations may not understand the Medicare benefits for ESRD patients and how to best provide services. 3. Dialysis units don’t understand what hospice services are available to their patients. 4. Each hospice organization is autonomous and can establish their own rules. 5. There is a lack of standardized terminology. 6. HIPAA issues need to be better understood and clarified.
Advance Care Planning Work Group Issues
1. Clarify who has responsibility for advance care planning. 2. Components of advance care planning should be identified and staff should be educated. 3. Patients need to select an individual to act as legal decision-maker. 4. Patients need appropriate AD forms from their dialysis unit. 5. Not all team members are comfortable with discussing death and dying issues and may need to better understand the grieving process.
Advance Care Planning Work Group Issues
6. There is a lack of standardization of AD forms and definitions. 7. The patient’s healthcare status can change quickly. 8. The decision to stop dialysis is usually a gradual process. 9. Advance care planning needs to be incorporated into what the dialysis units already do and should take into consideration the social worker’s current case load. 10. Variation in state laws is a consideration.
CPR Work Group Issues
1. Patients need to understand the ineffectiveness of CPR. 2. New, less-threatening ways to ask patients about their desire for CPR are needed. 3. Not all team members are comfortable addressing this topic. 4. DNR requires physician order and there needs to be appropriate communication with EMS. 5. Dealing with a deceased body in the dialysis unit is difficult because it may cause logistical problems. Conducting CPR and calling EMS is one way of assuring that the body is removed from the premises. 6. Individual who can pronounce death varies by state. 7. Potential malpractice risks
Physician Education Work Group Issues
1. Physicians need to have a better understanding of patient-centered care. 2. There may need to be clarification about end of life care, palliative care and imminent death care. 3. Physicians should be able to discuss the option of no dialysis treatment with patients (especially elderly patients). 4. Other physician specialty groups need to be informed (primary care physician). 5. There may be some disagreements in the dialysis units between the medical director and other practicing physicians.
Physician Education Work Group Issues
6. Legal liability and malpractice issues may come into play. 7. There may be a need for local ethics committees that could be arranged through Network MRBs to assist nephrologists and dialysis units with difficult end-oflife patient management issues. 8. Attention should be paid to the packaging of materials to physicians and the best way to communicate message.
Coalition Work Continues
• Work groups started conducting conference calls and producing information/tools/resources. Second in person meeting conducted November 29, 2005 where work groups presented their information and resources. Steering Committee members chosen to help guide the work of the coalition.
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Hospice Work Group
Developed statement to help clarify the hospice and ESRD Medicare benefits Two PowerPoints have been created for educational purposes to be used by Networks to educate dialysis and hospice providers. Write and publish article for hospice publication.
ESRD and Hospice
• Hospice services are utilized by 13.5% of ESRD patients as compared to 25% of non-ESRD patients.
• Less than 50% of ESRD patients withdrawing from dialysis receive hospice prior to death.
Murray, USRDS, ASN 2004
Barriers to Hospice for ESRD Patients
• Patient:
– Stigma associated with cancer and hospice – Denial of magnitude of illness by patient or family – Confusion about eligibility – Withdrawal thought to be prerequisite
• Physician provider:
– Reticence to assert 6 month survival – Lack of knowledge about acceptable diagnoses – Withdrawal thought to be prerequisite
Barriers to Hospice for ESRD Patients - 2
• Payer:
– Specific criteria outlined apply to ESRD patients retaining ESRD benefit
• Hospice provider:
– Variability with regard to coverage for ESRD – Withdrawal required or encouraged by policies discouraging therapies – Hospice pays for ESRD-related services if terminal diagnosis is ESRD
Current Benefit
• CMS provides hospice benefit for ESRD • Withdrawal not a prerequisite • Individual hospice entities have the option to choose NOT to accept ESRD patients • Non-ESRD diagnosis required for ESRD patients choosing to continue dialysis and retain their ESRD benefit (unless hospice to pay for ESRD-related services)
Current Benefit – cont.
• ESRD diagnosis may be used if: – 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 – Hospice pays for continued dialysis treatments
Explanation of Benefit
• A beneficiary with end-stage renal disease (ESRD) may be covered under the Medicare hospice benefit for services related to the terminal diagnosis. • Services not related to the terminal diagnosis are not covered under the hospice benefit.
Explanation of Benefit - 2
• When a beneficiary with ESRD has a terminal diagnosis other than ESRD (the following are considered examples of acceptable diagnoses for hospice coverage: adult failure to thrive, cancer, AIDS, chronic obstructive pulmonary disease [COPD]), the beneficiary may elect the hospice benefit and continue dialysis for palliative reasons.
Explanation of Benefit - 3
• ESRD beneficiaries with a non-ESRD terminal diagnosis who elect the hospice benefit but wish to continue dialysis may be covered under both the hospice benefit and the ESRD benefit.
– Services related to the terminal (non-ESRD) diagnosis would be covered under the hospice benefit. – Services related to ESRD (eg. dialysis) would be covered under the ESRD benefit.
Explanation of Benefit - 4
• When a beneficiary with a non renal diagnosis for the terminal illness elects to continue dialysis, the dialysis facility would continue to bill under the ESRD benefit and the hospice would bill for the terminal illness under the hospice benefit.
• ESRD beneficiaries may elect to use the hospice benefit under a diagnosis of ESRD as the terminal diagnosis. In this instance, the hospice provider must be responsible for all dialysis and supplies as part of the care for the terminal diagnosis and palliation. This must be reflected in the plan of care.
Bottom Line
• Two government benefits cannot pay for the same illness/condition in one beneficiary. • Two government agencies can pay for two different illnesses/conditions in one beneficiary.
Resources
• Education:
– http://www.cms.hhs.gov/medlearn/refhospice.asp
• Information:
– http://www.cms.hhs.gov/providers/hospiceps/
• Intermediary Carrier Directory:
– http://www.cms.hhs.gov/contacts/incardir.asp
• SectionIV (RHHIs):
– http://www.cms.hhs.gov/contacts/incardir.asp#4
Advance Care Planning Work Group
Developed a model policy (template) for facilities to use in implementing an Advance Care Planning Program. Identified patient and staff educational materials. Recommended www.caringinfo.org as a good resource for Advance Directive forms for dialysis facilities.
CPR Work Group
Recommended www.healthlawyers.org as a statespecific resource for end of life issues, advance directive forms, disposition of the expired patient state regulations and laws. Identified tools to help staff build skills in honoring a DNR order, disposition of the expired patient, HIPAA requirements and increasing the comfort level of staff in dealing with death/dying. Developed a patient education document on CPR.
Physician Work Group
Reviewed material from other work groups. Future Plans: Generate ideas and tools specific for physician education, including web page for physicians only and having CME opportunities. Identify strategies to change physician behavior, e.g., measure a component of end-of-life care as a core indicator. Develop videos to improve physician communication which provide words to say and model stages of communication.
Kidney End-of-Life Coalition Website
Website available: www.kidneyeol.org which houses more information and all of the resources the work groups have developed as well as future resources in the process of development. Future Plans: Continue to work on updating the website, hold next coalition meeting in June, 2006 and plan for a national meeting in 2007.
Kidney End-of-Life Coalition Website Overview