Should I stop kidney dialysis?
Introduction
This is a general overview of important issues as you decide whether to stop kidney dialysis for kidney failure. It is designed to help you learn about your choices and options and to prepare you to work with your doctor or health professional to make the best decision for you.
Key points in making your decision
When you have been diagnosed with kidney failure and have been undergoing dialysis, your chance for kidney transplantation and general quality of life while on dialysis will impact your treatment choices. It is important to talk to your doctor about the likelihood of your undergoing kidney transplantation before making the decision to stop kidney dialysis.
If kidney transplantation is not possible and regular dialysis treatments will be required to sustain your life, several factors may impact your decision to stop dialysis, including:
- Your physical health while on dialysis. Physically, you may feel better on dialysis than you did before dialysis treatment. However, if you are prone to the side effects of dialysis (such as appetite changes), or if you develop complications, you may feel that ongoing dialysis is too difficult.
- The impact of dialysis on your lifestyle. If dialysis allows you to return to the activities you participated in before, you may feel that dialysis does not significantly change your lifestyle. Even if you are not able to participate in all of the activities you enjoyed, you may feel your life is enjoyable and productive because of dialysis. Or you may feel that the quality of your life on dialysis is not good.
- Your life goals. Your diagnosis of kidney failure may force you to adjust your goals for your future. If you feel that your life has been rewarding and that you have accomplished many goals, you may feel you do not want to continue dialysis. If you have reasonable goals you have not yet met, you may be willing to continue dialysis.
- How prepared you are to face the end of your life. Most people die within weeks of stopping dialysis. If you choose to stop dialysis, you should be ready to face end-of-life issues, such as putting your financial and legal affairs in order and saying good-bye to those you love. If you feel you are not ready to face these difficult end-of-life issues, you may wish to continue dialysis.
- The wishes of your family and loved ones. How do your loved ones feel about the possibility of your stopping dialysis? If you wish to stop treatment, do they understand your reasons for wanting to stop? Do your loved ones support your decision to continue (or discontinue) treatment? Clearly state your wishes to your family.
Your doctor will help you understand the risks and benefits of dialysis, as well as the risks and benefits of stopping this treatment. If you receive kidney dialysis through a dialysis center, your health professionals will be available to talk to you and your family about your concerns and wishes.
Medical Information
What should I know about stopping kidney dialysis?
Dialysis is a mechanical process that performs part of the work that healthy kidneys normally do. When you are diagnosed with kidney failure, you and your doctor will discuss which type of dialysis is best for you. Two types of dialysis are used to treat kidney failure: hemodialysis and peritoneal dialysis.
In the United States, 1 in 4 people with kidney failure chooses to stop dialysis.1 In one study, 85% of people who chose to stop dialysis were judged by their loved ones or caregivers to have a good death. In almost half of those studied, some pain was present on the last day of life. However, the pain was judged to be severe in only 5% of the people.2
After dialysis is stopped, death may follow in days or weeks. As death nears, several physical and emotional changes may be experienced, including:
- Excessive sleepiness and weakness as periods of wakefulness become shorter and overall energy declines.
- Breathing changes, such as periods of rapid breathing and periods of no breathing.
- Visual and hearing changes, such as seeing or hearing things that no one else experiences.
- Appetite changes, such as eating or drinking less than normal.
- Urinary and bowel changes. Your urine may become dark brown or dark red, and stools may be hard or difficult to pass.
- Changes in body temperature, such as alternating between having a high body temperature and feeling very cold.
- Emotional changes, such as becoming less interested in the outside world and the specific details of daily life, including the date or time.
Other changes related to kidney failure may occur. Talk to your doctor about what to expect as your death nears. Also, end-of-life planning is often addressed by dialysis centers. If you receive treatment at a dialysis center, talk to the team of nurses, social workers, and spiritual advisers about what to expect if you stop dialysis.
What are the benefits of stopping kidney dialysis?
If you are receiving regular dialysis treatments and kidney transplantation is not an option for you, stopping dialysis may free you from the sense that your schedule and life are controlled by dialysis treatments. You may have more time to spend doing the things you enjoy and to focus on relationships with friends and loved ones.
Regular visits to a dialysis center can be difficult for some people receiving hemodialysis. If transportation is a problem for you, stopping dialysis may remove this concern.
Although dialysis treatments and supplies are covered by most insurance programs, dialysis can be very expensive for some people. Stopping dialysis may allow you to be less concerned about your finances.
If you have struggled with the diet limitations imposed by dialysis, stopping dialysis may mean you can enjoy foods you had to avoid. After you stop dialysis, you may feel less concerned about monitoring the amount of fluids you drink.
Dialysis is an invasive treatment that requires regularly accessing your bloodstream or abdomen through a dialysis access. Stopping dialysis may decrease complications that may have affected your dialysis access, such as infection or clotting of the dialysis access.
If you involve your loved ones in your decision to stop kidney dialysis, your relationships may be strengthened. You may be able to discuss other difficult issues, such as end-of-life goals and wishes.
After you have decided to stop dialysis, health professionals who specialize in palliative care and providing you with the highest quality of life possible, often through hospice, can help you and your loved ones. Hospice care offers the chance to identify personal goals, relieve physical symptoms, and manage emotional and spiritual needs.
What are the risks of stopping kidney dialysis?
Most people who stop kidney dialysis die within a few weeks. Stopping kidney dialysis may force you to confront difficult emotional issues, such as broken relationships, financial issues, or a fear of dying. Facing these issues usually will help you and your family resolve problems. However, the work of resolving problems can be challenging.
If you choose to stop kidney dialysis, you may need the support of a team of end-of-life care professionals, such as a hospice team. You may not wish to have many people involved in your care. If this is the case, allowing others to help may be difficult.
Regardless of whether you choose to continue or stop dialysis treatment, it is important to clearly state your health care decisions through a legal document called an advance directive. An advance directive will guide your treatment and ensure that you receive the medical treatment of your choice. For more information, see the topic Writing an Advance Directive.
What are the risks of continuing kidney dialysis?
Although dialysis sustains life, it is not a cure for kidney failure. Dialysis affects:
- Diet. Peritoneal dialysis may decrease appetite and cause a loss of protein from your body. For this reason, it may be necessary to eat a high-protein diet. If you are on hemodialysis, you may be instructed to reduce your intake of sodium and potassium and to limit foods high in phosphorus. Your fluid intake may be limited if you have a low level of sodium in the blood.
- Time. Dialysis will impact your schedule. Activities must be scheduled around your treatment. Hemodialysis must be done 3 times a week for 3 to 4 hours. Peritoneal dialysis must be done daily.
- Finances. Dialysis is an expensive procedure. Financial coverage may be available through the federal government's Medicare program, your state's Medicaid program, or your private insurance.
- Independence. You may become dependent on others to help with your dialysis treatment. If you are undergoing hemodialysis at a dialysis center, you may have many health professionals working with you to provide your treatment. You may need family or friends to provide transportation or to help with your treatments.
- Travel. Since dialysis is an ongoing treatment, your travel needs to be carefully planned. If you receive hemodialysis and are planning to travel, you will need to make arrangements at a dialysis center away from home.
Complications of peritoneal dialysis may include:
- Peritonitis, an infection of the abdominal wall, or cellulitis, a type of skin infection.
- A low blood level of the protein albumin. This can lead to fluid retention and swelling.
- Scar tissue around the dialysis access that can lead to a bowel blockage. However, this is rare. Other rare complications include hypothyroidism, seizures, high blood sugar, and hernias of the abdomen or groin.
Complications from hemodialysis may include:
- Low blood pressure.
- An abnormal heart rhythm from electrolyte imbalances.
- Fever.
- Allergic reactions from chemicals used during hemodialysis.
- Bleeding problems caused by the blood-thinning medicines used during hemodialysis.
- Problems with the dialysis access, such as infection or clotting of the access.
If you need more information, see the topic Care at the End of Life.
Your Information
Although dialysis sustains life, it is not a cure for kidney failure. For people who have kidney failure, dialysis is the only way to prolong life other than receiving a kidney transplant.
In general, your choices are:
- Continue kidney dialysis for kidney failure, which will prolong life.
- Stop kidney dialysis, which will allow death to occur naturally.
The decision about whether to stop kidney dialysis takes into account your personal feelings and the medical facts.
Deciding whether to stop kidney dialysis Reasons to stop kidney dialysis Reasons to continue kidney dialysis
- Side effects and complications of dialysis make continuing treatment too difficult.
- You feel that your quality of life on dialysis is not good enough to continue the treatment.
- You feel you have accomplished most of your life goals.
- Your physical condition makes transportation to and from a dialysis center difficult, and stopping dialysis will take away this concern.
- You have struggled with diet restrictions and wish to enjoy the foods dialysis makes you avoid.
- Your family and loved ones understand and support your decision to stop dialysis treatment.
Are there other reasons you might want to stop kidney dialysis?
- You feel better physically on dialysis than you did before dialysis treatment.
- Dialysis treatment allows you to return to your normal activities.
- You have reasonable goals that have not yet been met, and you feel that continuing dialysis treatment can help you reach those goals.
- The improvement of your physical condition on dialysis makes up for any difficulty in receiving the treatment.
- Diet restrictions have not significantly lessened your quality of life.
- Your family and loved ones feel you should continue dialysis treatment.
Are there other reasons you might want to continue kidney dialysis?
These personal stories may help you make your decision.
Wise Health Decision
Use this worksheet to help you make your decision. After completing it, you should have a better idea of how you feel about stopping kidney dialysis. Discuss the worksheet with your doctor.
Circle the answer that best applies to you.
I want to receive dialysis treatment that sustains my life. Yes No NA* I am comfortable with stopping dialysis and focusing on care aimed at managing the symptoms of my illness until death occurs naturally. Yes No Unsure Dialysis allows me to return to the activities I like to participate in. Yes No Unsure I'm not able to participate in all the activities I enjoy, but I feel my life is still enjoyable and productive because of dialysis. Yes No NA I am a candidate for kidney transplantation. Yes No Unsure I feel that dialysis can help me reach reasonable life goals that I have not yet accomplished. Yes No Unsure I am willing to accept help from support services, such as hospice, that may be offered if I choose to stop dialysis. Yes No Unsure I don't need to worry about the costs of dialysis. Yes No Unsure *NA = Not applicable
Use the following space to list any other important concerns you have about this decision.
What is your overall impression?
Your answers in the above worksheet are meant to give you a general idea of where you stand on this decision. You may have one overriding reason to stop or continue kidney dialysis.
Check the box below that represents your overall impression about your decision.
Leaning toward stopping kidney dialysis
Leaning toward continuing kidney dialysis
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| Author: | Sabra L. Katz-Wise | Last Updated: July 31, 2006 |
| Medical Review: | Adam Husney, MD - Family Medicine Ira Byock, MD - Palliative Care | |
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