Q: Our mom and dad are getting quite frail. They're both in their mid-80s. She's a diabetic and he has a heart condition. My brother and I live in fear that one of them will end up in the hospital on some kind of life support, and we won't have any idea what decisions to make. They're both of German descent highly independent and not given to talking about anything "personal." What can we do to get the conversation started, to learn more about their wishes?
A: I passed your question on to Donna Bales who is the director of the LIFE Project, a group that is trying to get just such discussions started among families and with physicians and other medical personnel all across Kansas. She sent me material that I think may be helpful:
First of all, yours is not an unusual problem. About two-thirds of American parents and their adult children never talk about end-of-life issues according to AARP. Not talking, however, is the worst form of estate planning. Don't talk about money. Instead ask, "What do you need?" Be as direct as possible, "Mom, Dad, I love you and I want to be here when you need me. I'd like to know what you want and not have to guess."
Once you get that far, there are five questions you need to have answered. Don't expect all the information at one time stretch the discussion over several conversations:
Will they have enough money to live on? Parents are often reluctant to share this information with their children. But with people often living well into the 90s, your parents may need assistance with the activities of daily living. You need to know what their finances will make affordable and what costs the family will need to consider picking up.
Does someone know where to find all of the important paper work? These include birth and marriage certificates, insurance policies, bank accounts and investments, and a will or letter of last instructions.
Is there a durable power of attorney? This gives someone, appointed by the parents, access to their bank accounts to pay bills in case they become incapacitated.
Is there a health-care proxy or living will to ensure that in the event of hospitalization, decisions have been made on the kind of care and life-prolonging procedures the parent prefers?
Has a will been written or a trust established?
If these discussions don't go well, an out-of-the-family mediator might be helpful: perhaps an attorney, member of the clergy, financial adviser or trusted friend. Keep trying. If your parents don't receive this conversation well at first, try again.
Also, it will help if you do some research on these issues. Here are some Web sites that you might check out:
www.agingwithdignity.org. Aging with Dignity has developed a document called Five Wishes, which allows parents to communicate their preferences in terms of care and treatment should they become seriously ill. Unfortunately, it is not legally accepted in Kansas yet, but is very helpful in getting conversations started.
For more information on end of life research and issues, contact Donna Bales at (316) 263-6380. LIFE is a coalition of Kansas agencies and organizations working together to ensure quality care for all Kansans at the end of life.