End-of-life care: Should I stop kidney dialysis?- Get the facts
- Compare your options
- What matters most to you?
- Where are you leaning now?
- What else do you need to make your decision?
1. Get the FactsYour options- Continue kidney dialysis, which will allow
you to live longer.
- Stop kidney dialysis, which will allow death to
occur naturally.
Before you decide to stop kidney dialysis, talk with your
doctor about your chances of getting a kidney transplant. Key points to remember- You may feel better on dialysis than you did
before you started treatment. But if you have side effects (such as appetite
changes), or if you start to have other problems, you may feel that continuing
dialysis is too hard.
- If dialysis lets you do the activities you
enjoyed before, you may feel that it hasn't changed your daily life that much.
You may feel this way even if you can't do all of your old activities. Or you
may feel that your quality of life on dialysis is not good.
- Your
diagnosis of kidney failure may force you to rethink your goals for your
future. If you feel that your life has been rewarding and that you have met
many goals, you may feel okay about stopping dialysis. But if you have goals
you have not yet met, you may want to continue dialysis.
- Most
people die within weeks of stopping dialysis. If you choose to stop dialysis,
you should be ready to put your personal, financial, and legal affairs in
order. You may want to continue dialysis if you aren't ready to face these
issues.
- Clearly state your wishes to your family. If you decide to
stop treatment, will your family understand your reasons? Do they support your
decision to continue (or stop) treatment?
FAQsWhat should you know about stopping dialysis? Dialysis is a process that filters waste from your
blood when your kidneys can no longer do the job. When you have kidney failure,
you may have either
hemodialysis or
peritoneal dialysis. In the United
States, 25 out of 100 people with kidney failure end up choosing to stop
dialysis.1 This means that 75 out of 100 choose to
continue dialysis. In a study of people who chose to stop
dialysis, 85 out of 100 were judged by their loved ones or caregivers to have
had a good death.1 About half of the people in the
study had pain on their last day of life, and of those people, the pain was
thought to be severe in only a small number of them. Most people
who stop dialysis die within a few weeks. As death nears, you may: You may have other changes related to kidney failure.
Talk with your doctor about what to expect as your death nears. A dialysis
center can also help with end-of-life planning. Whether you
decide to continue or stop dialysis treatment, take the time to let others know
your wishes about your care. You can use a legal document called an advance
directive to make sure that you get the medical treatment you want. For more
information, see the topic
Writing an Advance Directive. What are the benefits of stopping dialysis? If you
have been getting regular dialysis, and if a kidney transplant is not an option
for you, stopping dialysis may: - Give you more time each day to spend with
friends and family instead of going to regular dialysis treatments.
- Allow you to eat and drink what you want in the time you have
left. You may welcome this if your diet has been limited while you have been on
dialysis.
- Relieve worries about paying for dialysis, if you have
been concerned.
- Reduce problems that come with regular dialysis,
such as infection or clotting of the
dialysis access.
- Encourage you to talk
with your loved ones about end-of-life goals and wishes.
If you decide to stop dialysis, health professionals who
provide end-of-life care can help you have the highest quality of life
possible. This may be done through
hospice care. Hospice offers the chance to think about
personal goals, relieve pain, and take care of your emotional and spiritual
needs. What are the risks of stopping dialysis? Most
people die within a few weeks after they stop dialysis. Stopping dialysis may
force you to think about emotional issues, such as broken relationships, money
problems, or a fear of dying. Facing these issues may help you and your family
work out problems. But thinking about and dealing with them can be very
hard. 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. But you may not want to have a lot of
people involved in your care. If this is the case, allowing others to help may
be hard for you. What are the risks of continuing dialysis? Dialysis will keep you alive, but it is not a cure for kidney failure.
Dialysis affects: - What you eat. If you
are on peritoneal dialysis, you may need to eat a high-protein diet. If you are
on hemodialysis, you may need to eat less salt and limit foods with potassium
and phosphorus. You may also need to drink less water and other fluids if you
have a low level of sodium in your blood.
- Your time. Dialysis affects how you spend your time. Your activities must be
scheduled around your treatment. Hemodialysis must be done 3 times a week for 3
to 4 hours each time. Peritoneal dialysis must be done daily.
- Your money. Dialysis is expensive. But
Medicare, your state's Medicaid program, or your private insurance may help pay
for it.
- Your freedom. You may become
dependent on others to help with your dialysis treatment. If you are getting
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
take you to or help you with your treatments.
- Travel. When you're on dialysis, travel needs to be carefully
planned. If you are on hemodialysis and plan to travel, you will need to find a
dialysis center away from home.
Problems linked to
peritoneal dialysis may
include: Problems linked to
hemodialysis may
include: - Low blood pressure.
- An abnormal
heart rhythm.
- Fever.
- Allergic
reactions.
- Bleeding problems caused by the blood-thinning
medicines.
- Infection or clotting of the
dialysis access.
2. Compare Options| | Continue kidney dialysis
| Stop kidney dialysis
|
|---|
| What is usually involved? | - You continue to get
dialysis treatments every day or several times a week.
| - Your body will start to
shut down, and you will experience normal changes from the dying
process.
- You may need the support of a
hospice team.
| | What are the benefits? | - Dialysis keeps you
alive longer so you don't have to deal with dying yet.
- You may feel better physically while you're on dialysis than you
did before dialysis.
- You may be able to return to normal
activities.
- Treatment may allow you to meet goals you have set for
yourself.
| - You no longer have side
effects or problems from dialysis.
- You no longer need to limit what you eat and drink.
-
The time you have left is your own to spend with friends and family, not on
dialysis treatments.
- Your quality of life may be better.
| | What are the risks and side effects? | - Dialysis
won't cure you.
- Dialysis is expensive.
- Dialysis takes a lot of time
and can affect your quality of life.
- Dialysis has risks, including
infection, low blood sugar, allergic reactions, fever, abnormal heart rhythm,
and low levels of protein.
| - You will
probably die within a few weeks.
- As you near death, you'll face
end-of-life issues that may be hard to deal with.
|
Personal storiesAre you interested in what others
decided to do? Many people have faced this decision. These
personal stories may help you decide. Personal stories about kidney dialysisThese
stories are based on information gathered from health professionals and
consumers. They may be helpful as you make important health decisions. "I've been on
regular hemodialysis for the past 5 years. When I first started, I felt good
and my activities were not limited. I was diagnosed with heart failure 2 years
ago. Since then, my physical health has deteriorated. My doctor and I have
discussed the possibility of kidney transplant, but because of my deteriorating
health, we feel this would not be a good option. My preference is to stop
dialysis and receive hospice care. I'm tired of not feeling good and want to
die comfortably. " "I've had family members receive dialysis
because of kidney failure. In fact, my aunt told me I would hate dialysis
because she saw how miserable my grandmother was when she received dialysis
over 30 years ago. Dialysis has changed so much since then. I started
hemodialysis 4 years ago and have felt fine. In fact, I feel better than I did
before starting dialysis! There certainly are diet changes, and sometimes my
dialysis schedule is not convenient. However, I feel these are small prices to
pay for feeling better. I'm awaiting a kidney transplant. Although I look
forward to the day when I won't need dialysis, I wouldn't consider stopping.
" "I have diabetes that has been very
difficult to control. I received a kidney transplant 20 years ago. Two years
ago, my kidneys began to fail and I started kidney dialysis. Even with
dialysis, I have not felt good. Even with another kidney transplant, there is
no guarantee that I will feel good again. I have had problems with fluid
retention and my appetite is poor. I am tired of diet restrictions and the
limitations of dialysis. I have discussed my wish to stop dialysis with my
family and doctor, and they have been supportive. " "I started
dialysis 3 years ago when my chronic glomerulonephritis progressed to kidney
failure. Even on daily peritoneal dialysis, I lead an active and productive
life. I work full time and travel a lot. Even though dialysis requires
organization, I don't feel that it negatively impacts my life. I feel good most
of the time. At this point in my life, I wouldn't consider stopping dialysis.
" 3. Your FeelingsYour personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.
Reasons to stop kidney dialysis
Reasons to continue dialysis
I'm ready to face my death and let my illness take its course.
I'm not ready to die.
More important
Equally important
More important
I'm not happy with my quality of life.
I feel that my quality of life is okay right now.
More important
Equally important
More important
Meeting my remaining life goals is not a priority for me.
I feel that dialysis can give me enough time to meet my remaining goals.
More important
Equally important
More important
I don't want to keep relying on others for help with my dialysis treatments.
It doesn't bother me to rely on others for help.
More important
Equally important
More important
My other important reasons:
My other important reasons:
More important
Equally important
More important
4. Your DecisionNow that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.
Stopping dialysis
Continuing dialysis
Leaning toward
Undecided
Leaning toward
5. Quiz Yourself
Check the facts.
1.
In some cases, stopping dialysis could improve my quality of life.
You're right. If you start to have side effects or other problems, you may feel that continuing is too hard. Stopping may make you feel better.
2.
After I stop dialysis, I will have several months to get ready for my life to end.
You're right. Most people die within weeks of stopping dialysis. You should be ready to put your personal, financial, and legal affairs in order.
3.
If I decide to stop dialysis, it's important that my family understand my reasons.
You're right. It's important to clearly state your wishes to your family, so that they understand your reasons for stopping or continuing dialysis.
Decide what's next.
1.
Do you understand the options available to you?
2.
Are you clear about which benefits and side effects matter most to you?
3.
Do you have enough support and advice from others to make a choice?
Certainty.
1.
How sure do you feel right now about your decision?
Not sure at all
Somewhat sure
Very sure
2.
Check what you need to do before you make this decision.
- Nothing. I'm ready to take action.
- I want to discuss the options with others.
- I want to learn more about my options.
3.
Use the following space to list questions, concerns, and next steps.
References Citations Cohen LM, et al. (2003). Practical considerations in
dialysis withdrawal. JAMA, 289(16):
2113–2119.
| |