Hospice Supports Patient and Family in End Stage Kidney Disease

According to the National Institutes of Health, 27 million Americans are currently living with kidney disease, and with the aging of the Baby Boomers, renal disorders will become more and more common.

Most often, kidney disease is the result of other conditions, such as uncontrolled high blood pressure, cardiovascular disease, or most often, diabetes, which is the leading cause of kidney disease in the U.S. today.

Many people with kidney disease live for years with the condition. Chronic kidney disease can often be managed by lifestyle changes, and by treating underlying conditions. But sometimes, the patient's condition deteriorates until the kidneys are no longer working well enough to filter the blood and eliminate extra fluid, minerals and waste from the body. This is called kidney failure. Some kidney failure patients receive a kidney transplant. Many more go on dialysis, sometimes for many years.

Many dialysis patients respond well to dialysis over a long period of time. But at some point, a dialysis patient may conclude that continuing dialysis is not resulting in a quality of life they find acceptable.

Consulting with the medical team and family members can help a person with kidney failure know what is best. It is important to explore all treatment options. It may be that medical problems unrelated to the dialysis are affecting quality of life and that the medical team can offer a solution. Sometimes, however, this is not the case. Every person with end-stage renal disease (ESRD) has the right to refuse or withdraw from dialysis.

Once the patient has discontinued dialysis, hospice care can provide positive support for patient and family alike. The kidneys will fail within weeks, perhaps only days. During this last period of the patient's life, hospice care helps manage the physical, emotional and practical issues involved.
 
Hospice is a philosophy of care that focuses on comfort care rather than providing care to cure. The goal of hospice is to help people experience the end of life with peace and dignity. Hospice caregivers manage pain and other symptoms so a person can remain as comfortable as possible. Hospice cares for the whole person—emotionally, physically and spiritually—as well as providing services to help and support a patient's family. Hospice care can occur in a hospital, hospice center, skilled nursing center or at home. Although the majority of patients with ESRD in the U.S. die in the hospital, those who elect hospice care are more likely be able to remain at home during the last days.

The hospice team will see that the patient receives the appropriate pain medication, treatment to relieve symptoms caused by fluid build-up, and other palliative measures to make the person as comfortable as possible. And physical care isn't the only important way the hospice team supports the patient and family. Withdrawing from dialysis is most often an emotionally difficult process—so hospice services at this time are very inclusive. Hospice workers can help with advance directives and with the emotional and psychological issues that come with making this decision and with the end of life process.

Hospice team members include physicians, nurses, social workers, care aides, chaplains, volunteers and therapists. The hospice team works with patients to set up a plan of care that meets individual needs. Families receive support as well as bereavement services. Hospice care ultimately affirms life by providing the comfort that helps make the natural process of dying a more meaningful one for both patients and families.

A patient with ESRD who opts to end dialysis can receive hospice care through the Medicare Hospice Benefit, the Medicaid Hospice Benefit, or through a private insurance carrier. Many hospices will work with the patient and the family to provide services even if for some reason a person does not qualify for these benefits.

For More Information

March is National Kidney Month. The National Kidney Foundation offers information and resources about kidney disease, including a list of things to consider when deciding to stop dialysis.

The National Kidney and Urologic Diseases Information Clearinghouse, a service of the National Institutes of Health, offers information on kidney disease for patients and families, including information about withdrawing from dialysis.