Chapter 3: Conversations as the disease progresses
Her condition was so relentless… She said, “It shouldn’t take so long to die.” At the same time, she was sad and frustrated. She wasn’t ready or willing to go.
How long do I have?
Most people facing life-limiting illness will think about and eventually ask this question. Although it is challenging for all people involved, answering the question as fully as possible is probably the best way to handle it.
The question likely means different things to different people, but it offers an opportunity for important communication. It may be less about "How much time is left?" and more about "How do we want to spend the time that remains?" Having a sense of remaining time provides an opportunity to rethink and prioritize how to spend this increasingly precious resource.
“How long do I have to live?” may take on a particular meaning for someone who is hoping to live long enough to make it to a special event – a family reunion, a wedding anniversary, a graduation, the birth of a child. The response to “How long?” may drive a personal agenda to deal with business matters, write a will, or address personal relationships. It may involve reconnecting with friends or families, or communicating important messages previously left unspoken. Expressed or unexpressed, “How long?” reflects profound human emotions – longing, fear, sadness, hope.
What should I do if the person who is ill doesn’t want to acknowledge that treatment isn’t working?
Although you don’t want to take away hope, you do want to deal with the issues that come up. It is usually best to be upfront with the person who is ill. Tell them if you are concerned that they are not telling the physician what is really happening. Ask if you can go with them to the next doctor’s appointment or if you have their permission contact the physician. You might also consider telling the person who is ill how you are feeling; if you’re open, it may help them be open too.