Palliative Care in Patients with CKD
Charlotte Szromba
Q: Does Medicare cover hospice services for a patient currently receiving renal replacement therapy (RRT)?
A: “Death
is the proverbial 900-pound gorilla in all of our lives.” Most
individuals avoid thinking or talking about death (Sweet, 2007).
Current medical science has enabled the development of a complex number
of life-extending options, including renal replacement therapy (RRT).
The concept of palliative or end of life care includes the total care
of a patient who is not responding to curative therapies and includes
control of pain and other symptoms, restoration of functional capacity,
as well as psychological, social, and spiritual support. The goal of
this type of care is to deliver the best possible quality of life for
patients and their families who have illnesses that are both chronic
and life threatening. Patients with end stage renal disease (ESRD) have
irreversible kidney failure and face certain death unless they receive
RRT (Jablonski, 2007). Despite treatment, patients with chronic
kidney disease (CKD) still experience a shorter life span. Data from
the United States Renal Data System (USRDS) indicate that the expected
lifespan for an individual with ESRD is one-fifth that the general
population of the same age and gender (USRDS, 2005).
Hospice and Palliative Care
Hospice is a concept that stems from a Latin word meaning guesthouse
and was utilized originally to describe a place of shelter and rest to
weary or sick travelers on a long journey. In 1967, Dr. Cicely Saunders
established St. Christopher’s Hospice near London to provide
specialized care for dying patients utilizing a team approach for care
giving and modern pain management techniques. The first hospice program
in the U.S. was started in 1974 in New Haven, CT. In 2002, hospice
programs cared for 885,000 patients in the United States. Hospice
affirms life and neither prolongs life or hastens death and strives to
provide comfort and support to patients and their families with a
special emphasis on controlling pain and discomfort. The hospice
setting provides palliative care and strives to create a comfortable
environment for the patient and family members and to offer
psychosocial and spiritual counseling and social services (Hospice
Foundation, 2007).
CKD population and Palliative Care
In 2000, the Renal Physicians Association and the American Society of
Nephrology issued the Clinical Practice Guidelines, Shared
Decision-Making in the Appropriate Initiation of and Withdrawal from
Dialysis (ASN & RPA, 2000). This guideline presented
recommendations concerning withholding or withdrawing dialysis in
patients with ESRD. It also addressed the need for shared decision
making, advanced directives, and palliative care, including hospice.
The Robert Wood Johnson Foundation in 1997 began an initiative,
“Promoting Excellence in End of Life Care,” and extended it to include
the end stage renal disease population in 2000. Numerous
recommendations were made that centered on three areas: quality of
life, quality of dying, and education of the nephrology community. Both
of these documents provided much-needed attention to the needs of this
special CKD population in the area of end of life care.
Hospice and the CKD population
CKD is a grave, life-shortening chronic disease, yet according to the
National Hospice and Palliative Care Organization, only 3.1% of
non-cancer hospice admissions are for patients with ESRD (NHPCO, 2004).
Eligibility for Medicare hospice benefits is related to a patient’s
prognosis. The current language states that the person must be
terminally ill and have 6 months or less to live if the illness runs
its normal course (CMS, 2007). RRT is considered an active
life-sustaining treatment and many hospice agencies do not allow
patients with ESRD to continue treatment if they are to qualify for
hospice care. Occasionally a patient with CKD and with another comorbid
condition such as congestive heart failure, pulmonary disease, or
cancer may qualify for palliative hospice care (Jablonski, 2007). There
is a lack of literature on the experience of dying in the ESRD
population, but some anecdotal observations and studies implicate
inadequate treatment of pain and other symptoms, emotional stress, lack
of attention to family dynamics, and insufficient education on advance
directives and end of life care as contributors to a diminished quality
of dying (The Robert Wood Johnson Foundation, 2003).
Strategies for Hospice Placement in Patients With CKD
The life-sustaining technology of dialysis in the context of a
multi-faceted chronic disease places many burdens on our patients and
necessitates the need for managing a variety of symptoms, pain, and
discomfort. Yet the current eligibility requirements may not allow
hospice services to be given if the patient wants palliative care and
still desires to continue RRT.
Some strategies that may be employed in placing patients with CKD in hospice care include:
- Individual
hospice programs will occasionally accept patients who wish to continue
RRT, so one may have to “shop around” to find the appropriate hospice
program.
- Look
for a hospice program that has a “bridge” program that allows the
patient and family to “try on” the hospice experience for a length of
time. These types of programs will usually allow patients to continue
RRT.
- Examine
the total medical condition of the patient. Is there an appropriate
non-CKD-related diagnosis that would qualify for hospice care? Often
cardiomyopathy or certain pulmonary conditions will qualify.�
Need for Improvement
The
nephrology community has given much attention to end-of-life care in
the form of clinical guidelines and recommendations, but there is still
a problem with translating the guidelines into day-to-day clinical
practice. There are biological variations as people age and these
guidelines may have to be individualized for disease state, comorbid
conditions, and functional capacity in order to be more effective.
CMS
must re-examine the Medicare hospice benefits and permit patients with
end stage renal disease who wish to continue RRT to be eligible for
hospice care. A practical approach needs to be developed to integrate
palliative care principles into the disease management model so that
the benefits of this type of care can be provided to patients in all
stages of CKD. Finally, we as a community must work with all available
resources to improve end of life/palliative care for our patients with
CKD and continue to educate ourselves and our colleagues about the
principles of palliative care.
References
American
Society of Nephrology (ASN) & Renal Physicians Association (RPA).
(2000). Clinical practice guideline on shared decision-making in the
appropriate initiation of and withdrawal from dialysis. Washington, DC:
Renal Physicians Association.
Centers for Medicare and Medicaid Services, (2007). Medicare hospice benefits. Retrieved May 23, 2007 from www.medicare.gov.
Hospice Foundation of America. (2007). What is hospice? Retrieved May 23, 2007 from www.hospicefoundation.org.
Jablonski, A. (2007). Level of symptom relief and the need for
palliative care in the hemodialysis population. Journal of Hospice and
Palliative Nursing, 9(1), 50-58.
National Hospice and Palliative Care Organization (NHPCO). (2007). Facts and figures. Retrieved May 23, 2007 from www.nhpco.org.
Sweet, V. (2007). Thy will be done. Health Affairs, 26(3), 825-830.
The Robert Wood Johnson Foundation. (2003). ESRD workgroup final report
summary on end of life care: Recommendations to the field. Nephrology
Nursing Journal, 30(1), 59-63.
United States Renal Data System. (2006). USRDS 2005 Annual Report.
Bethesda, MD: National Institute of Diabetes and Digestive Diseases and
Kidney Disease.�
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Clinical Consult department is designed to provide answers to questions
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