Palliative Care and Shared Decision Making
Summary
Palliative care can help to relieve discomfort and stress for people with serious illnesses. It can be given along with treatments that try to cure the illness.
Shared decision making is a conversation with your doctor about treatment choices. Usually, treatment decisions are made when your doctor recommends a treatment and tells you about the possible pros and cons. But there’s often more than one way to treat an illness. In shared decision making, you and your doctor discuss various treatment options. A decision aid can show you the pros and cons of those different treatments, as well as their possible results.
Taking part in shared decision making can help you to make important palliative care decisions. It can bring to light the personal goals and values of you or your loved one. In addition to personal goals and values, the cost of treatment can be an important part of making choices about palliative care.
FAIR Health has created three decision aids for shared decision making during palliative care. The decision aids are free and include cost-of-care information. They can be used by patients or their families to help make choices about staying on:
- Ventilator for People Who Are Seriously Ill;
- Dialysis for People Who Are Seriously Ill; or
- Nutrition Options for People Who Are Seriously Ill.
You can access the decision aids here.
Shared Decision Making and Palliative Care
Palliative care can be given for serious illnesses like end-stage kidney disease (ESKD) or advanced cancer. In cases like these, shared decision making can provide a way for a patient, or a patient’s family, to think about what kind of care would best fit the patient’s needs and goals. For instance, someone with ESKD could use a decision aid to help him or her choose between remaining on kidney dialysis or stopping it.
Decisions about palliative care for serious illness are extremely personal, and there are no right or wrong choices. For example, one person may wish to be relieved of the discomfort of dialysis. That person may decide to go off of dialysis and let nature take its course. Another person may have the goal of seeing an important event take place—for instance, the birth of a grandchild. For that person, seeing the grandchild born is far more important than any discomfort he or she may have from dialysis.
Taking part in shared decision making can help make the goals and values of you or your loved one clear to you. Then it may be easier to make important decisions.
Your Action Plan: Make Decisions about Palliative Care
- If you think you’d like palliative care, talk to your doctor. Usually, you need a referral from your doctor for palliative care services.
- If you’re not clear on anything about your illness, or about what’s likely to happen with the illness in the future, ask your doctor to explain.
- Ask your doctor to go over any treatments for the illness that you may have in the future. Let your doctor know if there are any treatments you would or would not like to have.
- Talk to your doctor about your goals. For instance, if your goal is to see your child graduate from school, let your doctor know that.
- Let your doctor know if you have any personal, cultural, religious or spiritual beliefs that could have an effect on your care decisions.
- Give your doctor a copy of your living will or health care proxy, if you have one.