You can take comfort in knowing you are not alone. Other people have had to make these important decisions. It may help you to keep these questions in mind:
* “What are our goals for medical treatment?”
* “How often should we re-evaluate using dialysis?”
* “What would my loved one choose?”
You can talk with your health care team if you are unsure about the appropriateness of using dialysis. They can give you information to help guide your decision.
As you think about dialysis, your head as well as your heart will help you decide.
This information is a “starting place” for conversations among patients, families, and caregivers. It can prepare you for talking with health care professionals when a patient has very serious medical problems. Keep in mind that the best time to discuss these issues is before a crisis occurs.
Many People Ask. . .
“How does dialysis work?”
“What are its benefits and burdens?”
“Is dialysis always appropriate?”
“What happens if I don’t want dialysis?”
Where Do You Turn For Answers?
Facing decisions about dialysis can be terribly difficult. Often, it is a time of emotional confusion and suffering for families and caregivers, as well as for patients.
Your health care team can help you learn more about the benefits and burdens of dialysis.
Important Words of Caution About Diet And Dialysis
Dialysis imposes very strict limits on what patients can eat and drink. For persons with dementia, or in nursing homes, this may cause special problems.
What Is Dialysis?
Dialysis is a medical procedure used for patients with kidney failure to clean waste products and salts from the blood, remove excess fluids, and maintain a balance of natural body chemicals. Dialysis is not a “cure” for kidney failure or other serious illnesses that may also be affecting the patient; it is only a substitute for normal kidney function.
How Does It Work?
There are two common methods of dialysis: Hemodialysis and peritoneal dialysis. Hemodialysis removes waste by passing the patient’s blood through a special filter. For short-term hemodialysis, a temporary, large tube (catheter) is placed into a vein in the patient’s neck, shoulder, or groin. For longer-term dialysis, blood vessels in the patient’s arm are surgically connected, forming a shunt. During dialysis, needles inserted into the catheter or shunt carry the patient’s blood to the dialysis filter. The dialysis machine pumps the blood through the filter and returns it, cleansed, to the patient’s body. A dialysis treatment usually lasts 3 to 4 hours and is generally done three times weekly. The patient must lie or sit quietly during the entire session.
Peritoneal dialysis requires placing a large tube (catheter) into the patient’s abdominal cavity. The catheter remains in place and is used to circulate dialysis fluid into and out of the abdominal cavity several times every day. It makes use of a natural filtering membrane within the abdomen. Patients using this form of dialysis must carry a large volume of fluid in their abdomen.
Can We Try It For A Short Time?
Yes. Short-term “trial periods” of dialysis can sometimes indicate whether it will help the patient in the long run, or just prolong the natural dying process.
As You Think About Dialysis
The following summaries are taken from medical journals. We encourage you to discuss these statements, and other viewpoints as well, with your health care providers.
“Many elderly patients can have a good quality of life and reasonable life expectancy on dialysis.”
Source: Sekkarie M, Moss A, Am J Kidney Dis 1998; 31:464.
“When the benefit of dialysis to a patient is not clear, doctors should consider a limited time trial and assess the patient’s response after this time.”
Source: Moss A, Clin Geriatric Med 1994; 10:463.
“The patients and their families should be encouraged to realize that embarking on therapy does not prevent discontinuing therapy at a time in the future if the therapy does not meet their expectations.”
Source: Lowance D, Am J Kidney Dis 1993; 21:679.
“There may be good reasons to discontinue dialysis. . .when dialysis simply results in prolonging a dying process that is painful and undignified.”
Source: Brody B, Semin Dialysis 1998; 11:305.
“There is consensus in medical literature that patients with multiple organ system failure have such a poor prognosis that initiation or continuation of dialysis is ineffective and cannot be justified.”
Source: Paris J, Moss A, Clin Ethics Report 1993; 7:1.
“I feel it is appropriate to advise patients not to use dialysis when the patient is demented, or has impending dementia with no expectation of regaining cognitive function.”
Source: Lowance D, Am J Kidney Dis 1993; 21:679.
What Are Some Benefits Of Dialysis?
- Short-term dialysis is beneficial when the patient’s recovery from an accident, disease, or illness is likely to occur.
- Long-term dialysis maintains lie when kidneys permanently fail.
What Are Some Burdens Of Dialysis?
- Travel to and from the dialysis unit several times weekly may be tiring and difficult for some patient.
- The dialysis machine may remove too little or too much fluid, especially in patients with other serious medical problems.
- There is a risk of infection or clotting of the catheter or shunt.
- Patients on long-term dialysis do poorly if they cannot follow a strict diet, keep dialysis appointments, or take prescribed medications (often many).
- Patients who cannot communicate their feelings to the dialysis caregivers may have unrecognized complications and discomfort.
- Sometimes patients on dialysis can feel worse because of fluid and nutrient imbalances.
Is Dialysis Always Appropriate?
Rarely are there black and white answers about whether dialysis is appropriate. Whether it’s a good idea to rely on long-term dialysis depends on the patient’s condition. A frail nursing home patient with advanced cancer or Alzheimer’s Disease is much different from a patient who is otherwise healthy, except for kidney disease. Many people believe that dialysis is not appropriate for a patient in a permanent vegetative state or a patient with end-stage dementia. Many doctors believe it should not be used if the patient will die very soon regardless of dialysis. Even if a patient can survive, the choice of whether dialysis makes sense depends on the patient’s basic health, chances of recovery, will to live, and the burdens and benefits of further treatment. If a patient (or the patient’s substitute decision-maker) does not want dialysis, then legally and ethically it can be refused.
Resources You Can Use
National Kidney Foundation of Colorado, Idaho, Montana, and Wyoming
web site address: www.kidneycimw.org
Provides information on a variety of topics, including dialysis, end-of-life issues, and transplants. Educational workshops, “Vacation Kidney Center,” volunteer opportunities, and pre-dialysis information are offered.
American Kidney Fund
web site address: www.kidneyfund.org
Provides financial assistance to patients needing medication, special dietary requirements, or transportation to renal centers.
American Association of Kidney Patients
web site address: www.aakp.org
Helps renal patients and their families deal with the physical and emotional impact of kidney disease.
National Hospice Organization
(800) 658-8898 or (703) 243-5900
web site address: www.nho.org
Promotes quality comfort care, pain relief, and emotional and spiritual support for dying patients and their families.
*Information on this page was created by and obtained with permission from the Colorado Collective for Medical Decisions, Inc. (CCMD), 1999, and Hospital Shared Services of Colorado.