Nearing End Of Life From Breast Cancer

Do not expect your doctor to bring up the end of life subject. Not many do.

It is never too late or too early to discuss with your doctor what your feelings are about end of life. Your doctors and other members of your medical team do not know what you want unless you tell them.

A few topics you may want to discuss with your doctor or other members of your health care team are the following:

Pain or other symptoms

Be honest and open about how you feel about pain. Experience indicates that some people, particularly people who are agreeable by nature, do not admit to their doctor that they are in pain. If you want to suffer, so be it. Otherwise, let the doctor know if you have pain and where so he or she can suggest alternatives to stop or at least lower the amount of pain. There are even doctors who specialize in pain management.

Also tell your doctor what you can expect in the way of pain relief. Discuss the trade offs. For instance, full relief from pain may affect your ability to think clearly, or to stay alert.  An increase in pain medication can hasten death in a weakened body.

We have a Symptoms Diary to help keep track of pain. You can print it out and show it to your doctor instead of trying to remember what happened since your last visit. 

Treatments

Tell the doctor what kinds of treatments you do or do not want. Remember, it’s your body and your life. What treatments to take, or not, is up to you.

Communication

Decide what you want to know, how much you want to know, and when you have heard enough. Choose what is most comfortable for you. Some people want to know details about medical care and the doctor’s estimate of long you are likely to live (prognosis). Other people prefer to know as little as possible. 

Then tell your doctor and family members. Ask that they follow through with your wishes. (An Advance Health Care Directive such as a Health Care Power of Attorney makes sure your wishes continue to be communicated even if you become unable to communicate yourself.)

Family wishes

Some family members may have trouble dealing with breast cancer. They don't want to know how far the disease has advanced or how much time doctors think you have. Find out from your family members how much they want to know, and tell your health care team their wishes. Do this as soon as possible. It will help avoid conflicts or distress among your loved ones.

The Doctor’s participation

It is okay to ask your doctor for assurance that he or she will comply with your wishes for physical or mental treatment if you become unable to speak for yourself. It is one thing to express your wishes in an Advance Directive for Health Care or an Advance Mental Health Directive, but it is another for your doctor to comply with your wishes.

Also ask your doctor not to abandon you if a point comes when there is no longer anything he or she can do about stopping the disease's progression. Doctors have been known to abandon patients in this situation. It may help to let a doctor know that just his or her continuing presence and concern will help you remain hopeful even if there is nothing more the doctor can do medically. 

Don't be surprised if your doctor is uncomfortable with the discussion. After all, his or her training is to keep people alive. It's only recently that medical schools are starting to teach about end of life.

The circumstances

Many people are not as concerned about dying as about how they will die, including the fear of dying in pain and of dying alone. If you have these fears, discuss them with your medical team and family. When someone dies of cancer, there are physical signs of slowing down that are recognizable by a medical team. Generally the professionals can alert you and your family in enough time that they can be with you.

Bring up your concerns about a fear of loss of dignity if you have them.

If your doctor disagrees with what you want, ask whether the doctor will nevertheless carry out your wishes. If the doctor is not willing to do what you wish, consider switching doctors. Yes - even now it's not too late to change doctors to one who is a better fit with your needs. See: How To Switch Doctors.to learn how to make the switch).

For additional information, see:

• How To Communicate Effectively With Your Doctor
• Factors To Consider When Choosing A Doctor
• Advance Health Care Directives 101
• How To Enforce A Living Will And Other Advance Directives

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