End-of-Life Issues

Has a doctor told you that your sarcoma is incurable or terminal? If so, you should consider these points:

1. Does your doctor meet the criteria the Alliance uses for sarcoma specialists? You can find it on this page. If not, please seek a second opinion from someone who does. For those who can’t afford it, we offer financial assistance.

2. Some people live for a number of years after they are diagnosed as incurable or terminal. If you want, you can ask your doctor if he or she can estimate how much time you have left. Keep in mind that they are making their best guess, but it is still just a guess.

How do you choose whether or not to continue treatment?

1. Consider why people are giving advice. One person may tell you to be strong, to not give up, because she cannot imagine losing you. Another may urge you to stop because he doesn’t want you to suffer anymore. Decide what is best for you.

2. Be careful about comparing your situation to that of other people. It’s likely they have a different medical history, and the hospital or hospice they used may differ.

3. You may want to talk to knowledgeable people about your hopes and fears. What will be the side effects of treatment vs. the likelihood it will help you? What is the  dying process like? What will be the costs of treatment?

4. Are you in pain or fear dying in pain? Talk to health-care providers about pain management.

5. You may fear being a burden on family members and friends. Talk about it. See if people can form a care team. Check out what resources exist to help.

 

Getting your affairs in order, also known as advance planning

The American Bar Association offers a Consumer’s Tool Kit for Health Care Advance Planning (PDF).

Hospice and Palliative Care

Hospice Foundation of America
http://www.hospicefoundation.org

National Hospice and Palliative Care Organization
http://www.nhpco.org

The Natural Death Care Project
http://www.naturaldeathcare.org