End of life care is a topic that can cause tremendous stress and anxiety for both aging parents and children. Not only is the notion of your parents falling ill, needing care, and then ultimately passing away extremely unpleasant, but it is also a very detailed process. So much so that it tends to make people overwhelmed and, consequently, push it off for another day.
“People feel uncomfortable talking about death or dying because they feel it’s ‘morbid,’” says Sarah Roffe, a Licensed Clinical Social Worker and Certified Child Life Specialist and the co-founder of Kind Minds Therapy. Much like writing a will or other such necessary life planning, there’s a tendency to avoid such topics because it keeps the idea of mortality at bay.
The impulse — or the assumption that your parents already have this figured out — is natural. Despite the discomfort that may arise from end-of-life conversations, the fact is, they are absolutely necessary. And the topic needs to be broached sooner rather than later, particularly when the parents are healthy and in control of their faculties.
“There are families that are being put on the spot with a phone call from an emergency room or an ICU and their loved one can’t communicate anymore,” says Paul Malley, the President of Aging with Dignity, a Florida-based non-profit designed to help families navigate end-of-life issues. “And then they’re left to guess.”
Additionally, Malley says, not sorting out these issues ahead of time, and ensuring that all family members are in agreement, can lead to serious disagreements and disruptions.
“We’ve heard horror stories of siblings that don’t speak to each other after their parent died because they disagreed on what decisions were made at the end of life,” Malley says. “Nobody wants that.”
By having these conversations now, Roffee adds, you also help your loved ones feel less conflicted and less pressure about who’s making these hard decisions. “There is never the question ‘Is this what they would want?’ because it is already out in the open and they have confirmed with you directly that these are your wishes,” she says.
Still these are difficult conversations to have. How do you know what someone’s end of life needs are? An excellent method for demystifying the process is the Five Wishes program, founded by Aging with Dignity. Created in 1996, Five Wishes helps families create a living will, power of attorney, and issues related to comfort and religion. There’s a small cost to get some of the paperwork associated with the program, but it’s very much worth it.
As its name entails, the Five Wishes program divides decisions into a five-step checklist with the steps called wishes. They are as follows:
- Wish 1: The Person I Want to Make Care Decisions for Me When I Can’t
- Wish 2: The Kind of Medical Treatment I Want or Don’t Want
- Wish 3: How Comfortable I Want to Be
- Wish 4: How I Want People to Treat Me
- Wish 5: What I Want My Loved Ones to Know
“The whole idea with five wishes is that it keeps the discussion and the documentation simple and it’s intended for families to be able to use on their own,” says Malley. “So you don’t have to consult with an outside expert. You are the expert on what’s important to you and to your family.”
In order to broach the topic, Malley suggests taking a soft and compassionate approach. Rather than delving into all the legal and medical jargon that needs to be sorted out, talk to your parent or parents about how you care about them and want to see them taken care of.
“Start with a simple statement of, ‘I want to be a good son or daughter to you, mom or dad and I want to make the right decisions for you,’” Malley says. “‘So help me to understand what’s important to you.’ And the medical questions might not be the first place to start. It might be easier to start the conversation saying, ‘Who would you like to be there for you? If you were very sick or if you were near the end of life, who would you like to be there?”
The wishes are intended to soften the edges of the discussion and make topics more accessible. They’re organized into two sections, with the first two wishes covering the legal and healthcare concerns and the last three focused on personal care preferences.
The first two wishes, for instance, are paired together because those are the legal structures that are typically included in a durable power of attorney for healthcare and the living will. Wish one is naming the person whose trust to make decisions for you if you can’t make them for yourself — the equivalent of naming a healthcare agent or a durable power of attorney for healthcare.
“That’s one of the examples of how Five Wishes really changed the language from being in legalese or medical jargon,” says Malley. “It’s in plain everyday language so that all of our families can understand it.”
The remaining three wishes focus on the personal care that the loved one desires, and it’s these three wishes that Malley says tend to be the ones that families comment on the most.
“Every family experiences caring for somebody who’s sick,” says Malley. “And that’s what wishes three, four, and five focus on. So when people comment back to us about their experience caring for a loved one, they talk about things like being able to have photos in the room or playing music or reading poetry or scripture or praying — whatever the case is that their loved one asked for. They describe it as almost like an instruction book for what good care means to their loved ones.”
Planning end-of-life care for parents is not an easy thing to do, nor is it an easy conversation to have. However, Malley maintains that it does not have to be as difficult as people think. Having straightforward, empathetic discussions and using tools like Five Wishes will help make a difficult process much easier and put control back in the hands of families.
“There’s a message of empowerment to the person who’s filling it out,” Malley says of Five Wishes. “And also a message of instruction to the family. Because most of us don’t have experience being at the bedside of somebody who’s sick. We all want to do the right things, but most of us don’t know what the right things are. And when a family completes Five Wishes together, they have practical things that they can do for one another to show them that they are loved.”