You Have a Life Threatening Illness. Now What?

Dear Barbara, What do you do when your physician tells you that you have a life threatening illness?

First, ask what “life threatening” really means in relation to treatment and prognosis. Are there treatments? What are the chances those treatments will extend your life, and for how long? What are the side effects? How sick will the treatment make you? You want to think about quality of living versus simply extending your life or spending your final days receiving treatments with serious side effects.

Get a second opinion from a physician who is not connected to the physician who gave you the diagnosis. Also, never go to a doctor’s appointment alone. You need another set of ears, someone to ask questions and help remember what was said.

Let’s say both physicians have told you the disease is advanced. There are treatments, but the odds are not good that they will be effective. What do you do now?

Tell your family and the people close to you. You will want their support. You do not want to travel this experience alone.

Put your business affairs in order. Make sure someone you trust knows about your checking accounts, savings, and anything else that will need to be taken care of when you are gone. There may be end of life doulas in your area who can help with these things. Be sure to hire a well trained doula as not all doulas are.

Name a Power of Attorney and a Medical Power of Attorney, people who can speak for you about financial and medical matters when you can no longer speak for yourself. 

Decide if you want attempts made to restart your heart if it stops. Talk with your physician about a Do Not Resuscitate (DNR) order. Also complete an advance directive that states what kind of medical care you do and do not want if you cannot speak for yourself.

As your energy and interest in everyday activities begin to decline–less food, more sleep, less socialization–ask your physician about hospice and start researching hospices in your area. Talk with several. Ask questions about what you can expect from them. Assess their warmth, their availability, and how you feel talking with them. Explore end of life doulas and ask the same questions.

LIVE. Make each day special. Do what you can to find joy, peace of mind, and a sense of fulfillment.

There are two ways to die: gradual or fast. Fast death can come from an accident, heart attack, or stroke. There is no advance warning or opportunity to say goodbye. You are alive one minute and dead the next.

Gradual death from disease or old age can be a gift. It gives us time. Time to put our affairs in order, to be with the people we care about, to talk about what our lives and relationships have meant, to show our love and to receive it.

Something more... about living with a life threatening illness

Knowledge can help you make the most of the time you have.

The Approaching Death Support Kit brings together the resources I would want you and your family to have as you navigate a life threatening illness, from making choices and living each day to understanding what happens as the end of life approaches.

If I could sit beside you, these are the tools I would place in your hands.