Value of palliative care for those with End-Stage Renal Disease
John Halsey, Turn-Key Health
Caring for people with serious illnesses brings unique challenges. In particular, people over 65 living with end-stage renal disease (ESRD), the most advanced stage of kidney disease, live with comorbidities that impact self-management capabilities and require increased communication and coordination of care by the healthcare team. What's more, they have significantly increased morbidity and mortality.
Approximately 600,000 Americans live with ESRD, representing 1.1% of the Medicare population but 5.6% of Medicare costs. These patients require a patient-centered approach to their dialysis and non- dialysis care needs that will accomplish goals of better care, more effective spending and healthier people. Fortunately, palliative care is a specialized level of care that can help relieve pain and address symptoms and stresses related to ESRD.
Role of palliative care in ESRD
Innovative palliative care models are designed to manage those struggling with ESRD to help patients and caregivers address the associated challenges. While greater attention has been focused on advanced care planning, end-of-life decisions, conservative therapy and withdrawal from dialysis must be supported by adequate palliative care incorporating symptom control.
The number of patients with ESRD is increasing in the U.S., in part because of the epidemic of diabetes mellitus. Dialysis is now offered to older and more medically complex patients who would not have been considered for treatment in the days of limited dialysis resources. With this increase in the number of elderly accepted onto dialysis, patients, their nephrologists, families and multidisciplinary teams are often faced with end-of-life decisions and the provision of palliative care.
While dialysis may offer a better quality and quantity of life compared with conservative management, this may not always be the case. Today, patients and families are seeking information on all options and potential outcomes before embarking on such therapy. They should be assured of adequate symptom control and palliative care no matter which option is selected.
Those undertaking dialysis may benefit from being fully aware of their choices between active and conservative treatment should their functional status seriously deteriorate. This information should also be shared with caregivers. This clarifies treatment pathways and reduces the ambiguity surrounding decision making. If conservative therapy or withdrawal from dialysis is chosen, each should be supported by palliative care.
Helping residents and caregivers
According to the National Kidney Foundation, too few patients and family caregivers are aware that palliative care can and should be offered to all people living with this serious illness, from the time of diagnosis and regardless of age or stage of disease progression.
A person can receive palliative care at any age, and the individual does not need to be in the terminal phase of an illness. Many different palliative care options exist: in hospitals, outpatient clinics, long-term-care facilities, or hospice. Many health plans and hospital systems now offer outpatient palliative care in the home.Managing care and treatment for individuals with CKD and ESRD can be a round-the-clock effort that puts enormous physical and emotional strain on both the patient and the family. There are several ways that palliative care can offer an extra layer of support:
- Manage pain and other related conditions
Palliative care is provided alongside curative treatment. The palliative care team will work with individuals to provide relief from conditions related to kidney disease, including high blood pressure, heart disease, diabetes, and kidney failure.
- Help with communication with other doctors and evaluating treatment options
Palliative care is a team approach to care. Palliative care can help patients and families to make critical decisions about treatment options, including dialysis and kidney transplant.
The palliative care team can help patients and families understand and decide whether to go on dialysis. For those already being treated with dialysis and in declining health, palliative care specialists can help transition to managing the disease without it.
Patients eligible for a kidney transplant often turn to palliative care before, during and after their surgery. Whatever the treatment options, the palliative care team will work side-by-side with the nephrologist and/or transplant team to support the individual patient.
- Explain what to expect throughout the illness
The palliative care team will spend as much time as needed to help patients and family members better understand the condition and treatments, and better communicate among themselves and with others.
- Help coping with worry, stress or depression
The burdens associated with these serious illnesses can be heavy – in addition to related symptoms and difficult decisions regarding care, there may be emotional, spiritual and practical concerns. Palliative care provides emotional support for both patients and their families, and can often recommend additional therapies, including massages, talk therapy, and relaxation techniques to ease emotional and spiritual stress.
It's important to note that providing palliative care to patients with CKD begins at the time of diagnosis and continues throughout the patient's life. With progression of kidney disease, palliative care assumes increasing importance with time and is integral to "good deaths."
John Halsey is the Vice President, Business Development at Turn-Key Health.