For people who have been diagnosed with end-stage renal failure, also called end-stage kidney failure, there may be worries about the signs of dying from kidney failure. How do you know when symptoms mean that the end of life is nearing, and what can be done when kidney failure is in its final stage?
In this article, we’ll talk about end-stage kidney disease, possible treatments and the signs that death is near. We’ll also explore practical steps that can reduce discomfort and other symptoms, share tips to support coping and decision-making for both patients and caregivers and offer guidance on when hospice care may be appropriate.
Understanding Kidney Failure and its Final Stages
Chronic kidney disease (CKD) affects an estimated 35.5 million adults in the United States. [1] The kidneys are responsible for helping to filter waste and excess fluids from the body, and a diagnosis of CKD means they aren’t working as well as they should. Chronic kidney disease can develop for a number of reasons, but the most common causes are high blood pressure and diabetes. [2]
Kidney disease has five stages, each one describing a worsening of function from the previous stage. The final stage is end-stage renal disease (ESRD) or end-stage kidney failure.
As many as 808,000 people are living with ESRD. [3] When a person reaches this stage of kidney disease, without any treatment they will die within weeks to days. The treatment for kidney failure is either dialysis, which removes waste products the kidneys cannot, or kidney transplant. Dialysis does not work forever — but can allow people to live longer with ESRD.
Some people may choose to not pursue further treatment for the final stages of kidney failure. This is an individualized decision, based on many factors and discussion with a person’s healthcare providers. Sometimes it may be that dialysis was once working but is no longer effective. No matter how the decision is reached, it’s important for the patient and their caregivers to know what signs to look for and how to best support this transition at the end-of-life.
Recognizing the Signs of Dying from Kidney Failure
In the final stage of kidney disease as the end of life is near, there are common signs and symptoms that caregivers should be aware of. These include the signs of end-stage kidney disease and the signs that death is near.
Signs and Symptoms of End-Stage Kidney Disease
End-stage kidney disease is diagnosed when a blood test called glomerular filtration rate (GFR) measures kidney function at a value below 15. [4] A normal GFR is 60 or greater. [5] Symptoms include:
- Feeling weak and tired
- Making either very little or no urine
- Headaches
- Lower back pain
- Swelling in your arms, hands, legs or feet
- Dry, itchy skin
- Muscle cramps
- Feeling sick to your stomach or throwing up
- Decreased appetite
End-of-Life Signs of Kidney Failure
In the last weeks and days of kidney failure, signs that death is near include:
- Little or no urine output
- Decreased blood pressure
- Decreased body temperature
- Little or no desire to eat and drink
- Nausea
- Shallow breathing or a decreased rate of breathing
- Confusion
- Delirium
- Trouble speaking
- Sleeping all the time
- Becoming unresponsive
Providing Comfort and Care in End-Stage Kidney Disease
Patients and caregivers alike can feel overwhelmed when faced with end-stage kidney failure. Thankfully, there are several steps you can take to offer comfort and care to everyone involved during this time.
Palliative Care for Kidney Failure
Palliative care may be a helpful option for people with end-stage kidney disease who are still receiving dialysis and other treatments. It can even be started when kidney disease is first diagnosed. The focus of palliative care is improving quality of life, reducing bothersome symptoms and helping you establish personalized goals of care.
Hospice Care for Kidney Failure
As a person living with kidney failure nears the end of life, hospice care may be elected to help support both the patient and their family. To be eligible for hospice, a physician must certify that the patient has six months or less left to live if the disease runs its normal course, and curative treatment must be stopped. Hospice focuses on comfort and quality of life, helping people have a dignified death at home, surrounded by those they love.
Supporting Patients with End-Stage Kidney Disease at the End of Life
Along with enlisting the help of a palliative care or hospice team, there are some simple steps families and caregivers can take to offer comfort to those with kidney failure at the end of life:
- Offer physical comfort: holding hands or gentle massage can be soothing. Provide warm blankets if appropriate. Keep skin clean and dry. Lotion can soothe dry or itchy skin. Use extra pillows for support where needed.
- Provide a calm environment: a quiet space, low lighting, aromatherapy and peaceful music can help.
- Simply be there: sitting with someone, whether it’s quietly or while reading something to them or speaking softly can help ensure they don’t feel alone. Family members may choose to rotate so someone is always present.
- Include them: if they can speak, listen quietly. Ask them what they would like most at this moment.
Supporting Family Members and Caregivers
During this time, support for the person’s family members and/or primary caregivers is also crucial. Some things to consider include:
- Offer help with practical tasks: even simple things around the house, like laundry, watering plants or caring for pets, can reduce the load on caregivers.
- Give them a break: would they like someone to take over for an hour so they can tend to personal care or just step away?
- Lend an ear: ask if they want to talk, and then simply listen. You don’t need to know what to say or even offer suggestions—just acknowledging their feelings can help.
In addition, hospice offers spiritual support as needed as well as bereavement support and counseling. These vital services can help families cope with and prepare for their loved ones’ final days and passing.
Navigating the Journey with Knowledge and Compassion
Ultimately, being prepared by understanding what signs and symptoms to look for in end-stage kidney failure can help patients and families navigate the end-of-life journey. At Amedisys, our experienced hospice teams are available 24/7 to help answer questions. Our interdisciplinary teams provide professional support and care, so you aren’t alone during a challenging time.
To learn more about how hospice can help, call a care center near you today, or fill out the form below to talk to a hospice care specialist.
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.
