Issue #13A: Spread the Word About On Our Own Terms
We would like to encourage you to forward the following article to your family, friends and even your entire email address book. "How to talk about end-of-life concerns" is one of the topics discussed in a major PBS series from Bill Moyers that will be on television September 10-13 at 9 PM ET each evening. The series is called On Our Own Terms: Moyers on Dying. This article is from the Discussion Guide companion piece to the series and it can be found along with a great deal more information on end-of-life issues at:
HOW TO TALK ABOUT END-OF-LIFE CONCERNS
by Joanne Lynn, M.D., Americans for Better Care of the Dying
It is hard to talk about dying, death, and bereavement. Virtually everyone wants those conversations to have happened, but no one wants to "have that conversation today." Talking about death seems at first to make it more real, more threatening. Afterwards, though, most people find that talking ends up being very helpful and reassuring. Having some strategies may help.
First, push yourself to take the openings that come up. When Dad says, "I think the doctor thinks things are not going well," the family member is prone to say, "Don't talk that way. Everything is going to be fine." Instead, try, "Really? Why do you think that?" or try "What do you think
the doctor is trying to say?" (Other sets of openings and responses are in Handbook for Mortals, p. 11.)
Second, you should talk naturally about a time when the person will no longer be alive, even if at first you talk about some unreasonably long time into the future. "Mom, is there something that you want your granddaughter to have on her wedding day?" Very often, a very sick person will take the lead gratefully and say something like, "I wish I could see that, but I don't think I'll even see her at Christmas this year. I hope she finds someone half as good as your father. I wonder--if I could find that apron that my grandmother gave me when we married, would you keep it and give it to her then?" Obviously, that opens the gates to all sorts of conversations over the ensuing hours and days.
Third, talk about the patient's current hopes and fears. Ask something like, "Do you think this pain will get worse?" or "What do you think will happen as time goes on?" When you and the patient are not sure what you face, set up a way to find out (like letting the physician know that you want to discuss this at the next visit).
Remember, you need not use blunt or cold terms. Many Biblical phrases, poetry, songs, and metaphors deal with dying. And you need not talk of death most of the time. You can also reminisce, talk about daily life, and talk about plans and hopes. How can you start? First, recognize that you or your loved one is still living and has a past, a present, and a future.
Talk some about the past --share stories about what is important or what shaped this particular person or family. Talk some about the present -- what is going well and what is going badly for patient and family. And, even though it may seem awkward, talk about the future -- what hopes and dreams lie there, what practical problems, and how long the patient may live. In addition, you might find it useful to consider a list of important issues that are usually appropriate to consider.
Talking About the Future:
Pointers on conversations about the future between seriously ill patients and those who love them
Use language that everyone is comfortable in using.
Take your time. Pauses and shared quiet time can communicate too.
Check what one another understands and feels.
Encourage the patient to talk, in his or her own way.
Talk of the time near death and just after in a natural way.
Talk of practical matters and also of emotions and spiritual issues.
From the On Our Own Terms Discussion Guide, copyright (c) 2000 Educational Broadcasting Corporation and Public Affairs Television, Inc. Used by permission.