Palliative Care & Hospice

Palliative care, also called comfort care, is primarily directed at providing relief to anyone with a serious, complex illness, whether he/she isexpected to recover fully, to live with chronic illness for an extended time, or to experience disease progression. In this way, the goal is not to cure but to provide comfort, relieve suffering, and maintain the highest possible quality of life throughout the remaining lifetime through symptom and pain management. Well-rounded palliative care programs also address mental health and spiritual needs. The focus is not on death, but on compassionate specialized care for the living. Palliative care may be delivered in hospice, home care settings, or hospitals. More information about accessing palliative care can be found on the National Hospice & Palliative Care Organization’s (NHPCO) and the Center to Advance Palliative Care (CAPC) websites.

A primary distinction between palliative care and hospice care is that the Medicare Part A Hospice Benefit covers patients with a life expectancy of 6 months or less, if the disease progresses along its normal course. Palliative care has no time limit. Palliative care is not dependent on prognosis and is appropriate at any point in an illness. It can also be provided at the same time as treatment that is meant to cure. Hospice care always provides palliative care. However, it is focused on terminally ill patients, people who no longer seek treatments to cure them and who are expected to live for about 6 months or less. Patients can obtain palliative care through a referral from their physician. The cost would then be covered based on insurance coverage.

Hospice uses a specialty team approach to easing physical pain and management of negative symptoms for the patient. Hospice professionals are trained to anticipate the emotional and spiritual needs of the patient, which may vary greatly based on each patient’s personality and background.

It is understood that a serious illness impacts everyone close to the patient and each may require a highly individualized approach of teaching and support to prepare for the patient’s eventual death. Patients deserve an opportunity to discuss what is happening to them, if they choose, and to have a staff trained as catalysts in opening the lines of communication between the patient and the family. Hospice is primarily provided where the patient lives. This may be at his/her home, or in an assisted living facility, nursing home, or group home. Care may also be provided in a hospice inpatient unit on a short-term basis for acute symptom management. After the patient’s death, hospice will continue to reach out to the family for approximately one year to offer support and resources to help them cope with grief and loss and facilitate their adjustment.

Hospice may be paid for through the Medicare Hospice Benefit, the Medicaid Hospice Benefit, and most private insurers. If a person does not have insurance coverage, some hospices may work with the person and his or her family to ensure that needed services are met. Hospice is available to all persons who meet the diagnostic criteria regardless of age, race, or religion.

Despite its availability, hospice care is underutilized in general. The United States Renal Data System (USRDS) 2005 Annual Data Report states that less than 22% of all U.S. dying patients used hospice. Even fewer of all dying dialysis patients used hospice (13.5%). Of those patients who withdrew from dialysis, only 41.9% used hospice. Underutilization of hospice in the End-Stage Renal Disease (ESRD) or chronic kidney disease (CKD) population may be due to misunderstanding about eligibility, as well as hospice providers’ variability in accepting these patients.

ESRD patients are not required to withdraw from dialysis to be eligible for the Medicare hospice benefit. (Reference: Medicare Benefit Policy Manual, Chapter 11 End Stage Renal Disease 50.6.1.4 - Coverage Under the Hospice Benefit (Rev. 1, 10-01-03))

A common misconception is that a dialysis patient must stop dialysis in order to be accepted into a hospice program. Hospice provides care and services for patients based on their terminal diagnosis. Most patients have several, if not numerous, co-morbidities. If an ESRD (also referred to as CKD) patient utilized the Medicare Hospice benefit for a terminal diagnosis other than ESRD, then the patient could continue to use the ESRD Medicare benefit for continuing dialysis.

Example: A patient may be receiving hospice for end-stage heart disease, have Type 2 insulin-dependent diabetes, and be on dialysis due to ESRD. Hospice would be responsible for covering all of the treatment for the heart disease, as well as providing comfort care. The diabetes care would continue to be covered financially as it was prior to hospice involvement , and dialysis would continue to be paid for by the ESRD Medicare Part B benefit.

If hospice benefits were received based on ESRD as the terminal diagnosis, the Medicare hospice benefit must provide the coverage for all ESRD care and the Medicare ESRD benefit would cease. This circumstance may exist in two (2) ways:

1. ESRD patients who choose to withdraw from dialysis may receive Medicare coverage for hospice services via the hospice benefit. In this situation, ESRD may be considered the terminal diagnosis, and all services related to ESRD would be covered under the Medicare hospice benefit.
   
2. ESRD patients may elect to continue on dialysis and use the hospice benefit with ESRD as the terminal diagnosis. In this situation, however, the hospice provider must be willing to accept responsibility 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. For many reasons, a hospice may not be willing to accept a patient in this situation.

Resources for Dialysis Facility Staff and Hospice Providers:

1. Additional information on the Medicare hospice benefit is available by visiting the Centers for Medicare & Medicaid (CMS) website. This resource has been developed to incorporate all Medicare fee-for-service hospice information in one location. It includes billing and payment information, CMS manuals, and educational resources.

2. The Code of Federal Regulations for hospice services (42 CFR Part 418) is available on the U.S. Government Printing Office website. This website houses all of the federal regulations pertaining to Medicare services.

3. Caring Connections is a program of the National Hospice and Palliative Care Organization (NHPCO). It is a national consumer engagement initiative to improve care at the end of life and is supported by a grant from the Robert Wood Johnson Foundation. It provides free resources and information in both English and Spanish to help make decisions about end-of-life care and services, including hospice.

4. The Center to Advance Palliative Care (CAPC) provides health care professionals with the tools, training, and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other healthcare settings. CAPC is a national organization dedicated to increasing the availability of quality palliative care services for people facing serious illness.

5. The National Hospice and Palliative Care Organization's (NHPCO) website has many legal and regulatory resources pertaining to palliative care and hospice.

6. The Renal Palliative Care Bibliography (PDF) was developed by the Kidney End-of-Life Coalition.

7. The Social Work in Hospice and Palliative Care Network website has many resources in its library, including CEU opportunities and standards of practice.

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