End of Life Care
Recognizing that 20% of dialysis patients die each year, coordinated end-of-life care is an essential part of a quality care plan. However, there are many misconceptions about available end-of-life services for kidney patients. Additionally, questions exist as to how to best help patients express their end-of-life treatment desires, how to implement a quality end-of-life and palliative care program in the dialysis unit, and how to meet the educational needs of patients, families, and healthcare professionals.
In order to address these questions, Quality Insights Renal Network 5 formed the national Kidney End-of-Life Coalition, now the Coalition for Supportive Care of Kidney Patients. The Coalition for Supportive Care of Kidney Patients (CSCKP) is a national organization of renal and palliative care healthcare professionals, patients, and families seeking to transform care delivery so that all patients diagnosed with advanced CKD or ESRD are offered supportive care from the time of diagnosis and are provided with all treatment options, including end-of-life and bereavement care.
In 2019, after 15 years, the Coalition for Supportive Care of Kidney Patients, transitioned to George Washington University. GWU will continue and further grow the Coalition's activities to improve supportive care for patients with kidney disease.
Please visit www.kidneysupportivecare.org for more information about CSCKP and to access a variety of resources for patients, families, and professionals
The Nature of Palliative Care
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 is expected 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 remaining life 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.
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. 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. 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. Dialysis patients can enter hospice and continue dialysis if they have a secondary diagnosis that warrants hospice care. They can also opt to discontinue dialysis and enter hospice for their renal disease. Prognosis needs to be discussed with the patient’s physician.
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.
www.kidneysupportivecare.org - Coalition for Supportive Care of Kidney Patients
www.nhpco.org - National Hospice and Palliative Care Organization
www.getpalliativecare.org - "Get Palliative Care" campaign
www.whatmattersnow.org - Provides free personal websites for people whose lives have been affected by serious illness or injury