End-stage renal disease is a life-limiting condition that affects thousands of people each year. Treatment options include dialysis and kidney transplant, and life expectancy can vary. If you or a loved one are living with end-stage renal disease, it can be helpful to understand what to expect as the disease progresses to end-of-life, and how hospice care can support comfort and quality of life during this time.
Choosing Palliative Care vs. Hospice for End-Stage Renal Disease
When kidney disease (also called renal disease) is first identified, it may come as a surprise to many people. The Centers for Disease Control (CDC) estimates that as many as nine out of ten people with renal disease do not know they have it.
Once chronic kidney disease progresses to end-stage renal disease, it can be treated with either dialysis or kidney transplant. Without treatment, life expectancy is limited to days to weeks. Some people choose not to pursue or continue treatment, and instead opt for the support of hospice care.
Palliative care is also an option to help manage end-stage renal disease. In fact, palliative care can be started at the time chronic kidney disease is diagnosed, even if you are not in the end stages of the condition. This is because the goal of palliative care is to help manage chronic disease, guiding you through deciding on your wishes for treatment and helping you to maintain quality of life.
When a physician certifies that a person likely has six months or less left to live, hospice care can offer peace of mind along with medical care provided by skilled clinicians to manage pain and symptoms of the disease. Hospice care is also designed to support caregivers of patients, offering respite care in some situations and bereavement support for up to 13 months after the patient’s passing.
How Hospice Helps Patients with End-Stage Kidney Failure
There are several ways that hospice can offer compassionate, high-quality care to people living with end-stage renal disease. A common misconception of hospice care is that it is “giving up.” However, the goal of hospice is to provide the best quality of life during the end-of-life journey. Together, a team of hospice professionals can help guide a person and their loved ones through ensuring their wishes for the end of life are met and that dignity and comfort is prioritized. Here are some important parts of hospice care:
Pain and Symptom Management
Hospice care is focused on pain and symptom management, understanding that each patient’s situation is unique, and symptoms can change quickly. Effective management of end-stage renal disease at the end of life includes regular assessment of symptoms and pain levels as well as educating patients and family members about signs of problems so that issues can be treated early.
Treatment can include medication as well as non-medication options. By empowering people to live as pain and symptom-free as possible at the end of life, hospice allows them to enjoy the things that matter most to them and avoid unnecessary trips to the hospital.
Emotional and Psychological Support
Hospice care treats the whole person, not just physical symptoms of a disease. This includes treating anxiety, providing spiritual support if needed and teaching patients and loved ones how to care for their emotional well-being during this phase of life.
Beyond this, hospice also provides bereavement support. As part of the Medicare hospice benefit, family caregivers and close friends of a hospice patient have access to bereavement care from the time of the patient’s admission until 13 months following the death of the patient.
Enhanced Quality of Life
The overall care provided by hospice ultimately improves quality of life for those facing a terminal illness like end-stage renal disease. This enhanced quality of life supports another important goal: staying at home. According to a survey by the Kaiser Family Foundation, seven out of ten Americans prefer to die at home, and without the comprehensive support of hospice, it can be difficult to achieve that goal.
When is Hospice Needed for End-Stage Renal Disease?
There is no single correct answer to the question of when hospice is the right answer for end-stage renal disease. Each person, in discussion with their healthcare team, will need to consider their treatment options, prognosis and goals of care. There are several signs that it may be time to consider hospice:
- In early end-stage renal disease— symptoms can include feeling weak and tired, making either very little or no urine, dry/itching skin, lower back pain, swelling in the arms, legs, or feet, headaches, muscle cramps, nausea and decreased appetite.
- In more advanced end-stage renal disease— symptoms can include confusion delirium, trouble breathing, chest pain, seizures and unresponsiveness.
These symptoms quickly progress to the end of life without intervention. Ideally, if hospice care is chosen for end-stage renal disease, it should be introduced before symptoms advance, either at the time of diagnosis or if the decision has been made to stop dialysis. That way, symptoms can be well-controlled right away for better quality of life during the remaining days or weeks of end-stage renal disease.
Choosing Hospice for End-Stage Renal Disease
If you are still unsure about whether hospice is right for you or a loved one with end-stage renal disease, having a conversation with a trusted healthcare provider can help. They can talk to you about the likely outcomes of different treatment options like dialysis and kidney transplant, and whether you meet the eligibility criteria for hospice care.
At Amedisys, we always have teams standing by to help answer any questions you may have about how hospice care is delivered, how it may benefit your situation and whether it’s the right time to consider starting care. You can fill out this form to speak to a hospice care specialist, or contact a care center near you.
Deb Gallaher, MSN, MBA, RN, NE-BC, CHPN, is a Senior Hospice Clinical Education Specialist for Amedisys. She has 10 years of experience in hospice and is passionate about sharing her insights on high-quality care.
