By Alexandra Sifferlin
May 31, 2012
In this week’s TIME cover story, “The Long Goodbye” (available to subscribers here), journalist Joe Klein writes about the loss of his parents. They both suffered from dementia and died within months of each other. Through their end of life, Klein became his parents’ death panel.
For the many other families facing the same journey, experts’ best advice is to prepare early. As with most difficult transitions, caring for a parent or loved at the end of life is easier if you’ve planned for it. Trying to make the best possible decisions about care often leads to added stress and confusion, especially if your family is already in a difficult situation. “It’s all pre-planning really,” says Malene Smith Davis, CEO of Capital Caring, which provides palliative care and guidance for families. “People really do cope well if they have a conversation about care with their families early. When families don’t have the conversation, that’s when there’s turmoil because no one is prepared and it’s inevitable.”
Here are some tips for making end-of-life care easier to handle:
Keep communication open. Have “the conversation” early. Make sure family members designate who they want as their health care agent if they cannot make medical decisions on their own and need someone to speak on their behalf. “The last place you want to have a conversation about who will take over as a health care agent is in an emergency,” says Paul Malley, president of Aging With Dignity, a Florida-based advocacy group for terminally ill patients. “This can be the adult child or the parent’s best friend perhaps. There needs to be a conversation about everything from what medical treatments the loved one wants to how they feel about life support. The fewer surprises the better.”
Malley recommends opening the conversation to the entire family. “So often when parents are older or have a serious diagnosis, we put them in the hot seat and say, ‘O.K., Mom and Dad, here are a list of questions you need to answer.’ Instead, bring the whole family together. Even college kids can tell their families what they want in an emergency. That way the whole family can think back and remember everyone’s wishes,” he says.