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For many people with kidney failure, dialysis or a kidney transplant enables them to live longer and enjoy their quality of life. However, this may not be the case for everyone and each person has the right to choose how—or if—they want to receive treatment for chronic kidney disease. Without life-sustaining dialysis or a kidney transplant, once a person with kidney disease reaches stage 5 (end stage renal disease or ESRD), toxins build up in the body and death usually comes within a few weeks.
The decision to stop treatment should be an informed and voluntary choice. Experts recommend patients talk with their physicians and a social worker or therapist to understand their choices and know what to expect.
It’s the patient’s right to make the decision to stop dialysis. Sometimes, knowing that death can be pain-free and peaceful for the person with ESRD helps ease family members’ fears.
There are many reasons why someone with ESRD may not want to continue or start dialysis. Some people feel they’ve lived a full life and don’t want to bother with additional surgery and treatments.
Studies have shown that people most likely to withdraw from dialysis are older and living in nursing homes. They often have health problems in addition to kidney disease, and suffer more severe pain. They usually have physical limitations that restrict normal daily activities.
If a loved one decides to stop dialysis, it’s important that family members try to understand and respect that decision. The patient’s treatment team should be available to make sure the patient and family members understand the effects of the decision.
While talking about death and dying can be difficult, most families find it’s a relief to have a plan in place for when the time comes. Planning for care and respecting the wishes of the patient makes end-of-life decisions easier. An advance directive can help family members know what the patient wants regarding end-of-life care so the family doesn’t have to make those decisions for the patient. An advance directive is a legal document that spells out a person’s wishes regarding future crisis care. All adults should have an advanced directive. Having an advance directive lets everyone know what to do if you become unable to communicate those wishes.If you have questions about an advance directive, please talk with your physician or an attorney.
Patients who stop dialysis receive what’s called palliative care, also called comfort care, which focuses on helping patients stay as comfortable as possible during the time remaining. When someone has made the decision to stop dialysis, hospice can be referred by their physician. Hospice, a form of palliative care, provides pain relief and symptom control and can take place in the patient’s home, at a hospice facility or in the hospital. For more information on hospice, talk to your physician.
Without dialysis, toxins build up in the blood, causing a condition called uremia. The patient will receive whatever medicines are necessary to manage symptoms of uremia and other medical conditions. Depending on how quickly the toxins build up, death usually follows anywhere from a few days to several weeks.
As the toxins build up, a person may experience certain physical and emotional changes. In the final days, the body starts to shut down. In most instances, the shut-down is an orderly series of physical changes which may include:
Patients who choose to stop or not start dialysis are not required to eat or take in fluids. In most cases, a patient is allowed to eat or drink if they want to, but forcing fluids or nutrition is not recommended.
Medicines can be given for pain, anxiety, agitation or congestion. . As the body’s systems shut down, a person slips into unconsciousness and the heart stops beating.
Most people who pass away from kidney failure have what family members and caregivers describe as a “good death.” A study reported that patients who discontinued dialysis described a good death as pain-free, peaceful and brief. The patients’ families echoed this sentiment, adding a good death included having loved ones present at the end.
When the dialysis patient and their loved ones are prepared for the final days, the time remaining can be spent in companionship, reminiscing, laughing and crying. Many people never have the opportunity for closure. Many kidney failure patients and their loved ones say they’re grateful for the opportunity to express affection and say goodbye.
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