When someone you care about has just been handed a scary diagnosis, there’s a lot to process and discuss, whether your parent has just been told they have Alzheimer’s or your spouse has learned they have terminal cancer. But one crucial conversation shouldn’t be neglected: end-of-life care. While 90 percent of people say talking with their loved ones about this is important, only a little over a quarter (27 percent) of them have done so, according to the Conversation Project, an organization dedicated to helping people talk about their wishes for end-of-life care.
“It is a cultural issue going back millenniums,” says Harriet Warshaw, former executive director of the Conversation Project. “No one wants to contemplate their own mortality and the loss of their loved one.”
“People think that if you talk about it, you’re somehow inviting it into your life,” says Dr. Ira Byock, a palliative-care physician in Torrance, California, and author of “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.” “My experience over many years of being a doctor is that not talking about it doesn’t protect people from illness and dying happening. It just means that when it happens, it’s far more likely to happen in ways that people would not have wanted.”
“People think that if you talk about it, you’re somehow inviting it into your life.”
DR. IRA BYOCK, PALLIATIVE-CARE PHYSICIAN
But if done right, it can actually bring the two of you closer, and help alleviate anxieties. It’s also important to do it early, when your loved one is still able to articulate their wishes. Here’s how to get started.
Opening the dialogue
If you’re reluctant to have the conversation right away, it’s okay to just think about it, says Warshaw. You can begin by writing a letter to your loved one, even if you don’t show it to them or practice having the conversation with the friend. Remember that the conversation isn’t a one-time thing; it’s more likely the first of many conversations that you’ll be having over the next few weeks or months.
One good way to start the discussion is to have it over dinner — literally. The website Death Over Dinner offers advice on how to throw an intimate dinner party where you can have these very conversations. “It’s an opportunity to discuss some real issues in a more relaxed setting — for example, if you could have anyone sing at your funeral memorial service, who would it be? What’s on your bucket list to do before you die?” says Michelle Wulfestieg, executive director of the Southern California Hospice Foundation.
Ask permission to have the conversation — and listen
People respond to end-of-life discussions in different ways. Some get defensive and/or go into denial, while others are more open about it. Make sure that your loved one is okay talking about it, and reassure them that you’ll respect their wishes on the topic.
You could ask by saying something like, “I’d like to talk to you about how you’d like to be cared for if you got really sick. Even though you’re healthy now, I’m afraid if we don’t talk about it now, I won’t know the kind of care you’d like. Is this OK? It will make me feel better.” It’s normal to experience resistance and pushback. If that happens, let it go and try again a few weeks or months later.
When you do have the conversation, make sure you’re truly hearing and understanding everything your loved one is saying, even if you disagree with it. Remember, this is a time for them to articulate their wishes, not a time for debate. You can make clear that you’re listening with body language like nodding your head, holding their hand and occasionally even hugging them.
Ask the right questions
One of the most important things they will need to decide is who will be their health care proxy, the person who expresses their wishes and makes health care decisions for them if they are unable to do so. You can start this conversation by asking them who they want — and don’t want — involved in their medical care if they are not able to make decisions. It’s important that they choose someone who knows their wishes well. This could be a spouse, a sibling, a child or even a trusted friend — anyone that they feel will speak for them if they can no longer speak for themselves.
The second important thing to discuss is their wishes for end-of-life care. Where do they want to receive care — at home or in a nursing home? Are there treatments that they would want or not want, such as resuscitation or breathing machines? At what point do they want to switch from curative care (care aimed at treating or curing their illness) to comfort care (care aimed at comfort and quality of life)? Once they’ve thought about it, it’s a good idea to create an advance directive, or living will — a legal document where they state their desires in writing.
Other important topics include family grievances they are worried about, or major milestones they want to make sure they are there for (for example, the birth of a grandchild or their 80th birthday). Be patient, especially if your loved one doesn’t have answers to all of these right away. They may need some time to think. “This is the first of many conversations — you don’t have to cover everything right now,” stresses Warshaw. Remind them that nothing is set in stone, and they can always change their mind later on.
Don’t forget funeral planning
It may sound morbid to bring up funerals, but it’s wise to discuss how your loved one would want to be remembered. Their wishes may even surprise you. “One good way to bring it up is if you know they’ve gone to a funeral, ask them what they liked and disliked about it,” suggests Ruth Rincon, a grief counselor at Fairhaven Memorial Park in Santa Ana, CA. “Then ask them how they would envision their own service.” While it may seem scary to have the initial conversation, it can be empowering to your loved one by giving them a sense of control over their own destiny.
