End-of-life decisions are never easy to address. But they’re something adults of all ages should consider. Read this interview with Paul Malley, president of Aging With Dignity, to learn how this organization helps people put end-of-life decisions in their own words.
Aging With Dignity is a national non-profit organization. Its mission is to protect the human dignity of the aging population and to promote better care for those near the end-of-life.
Through his work and friendship with Mother Theresa, the organization’s founder, Jim Towey, was inspired to develop Five Wishes, a living will that helps people plan for and receive the care they want if they become seriously ill.
Users of Five Wishes can complete the form in hard copy or online. The online version allows users to save the form, print a copy for their records and even transmit it electronically. More than 18 million people have completed Five Wishes, and it has been distributed by more than 35,000 organizations.
A Place for Mom recently had the opportunity to speak with the president of Aging With Dignity, Paul Malley, about the Five Wishes campaign and what a living will means to individuals and families.
Paul Malley: Around one in five Americans has filled out an advance directive. Those numbers go up for seniors–about half of adults over 65 have an advance directive. What we’ve gathered is that this is something people have thought about, something they think is a good idea. But they’ve put it off, thinking they’ll get to it another day. Then when it’s needed, it’s too late, especially when people are no longer able to make their own end-of-life decisions.
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PM: Aging With Dignity wanted to create an end-of-life communication tool that addressed a person’s needs in his or her own words. Traditional living wills, written in terms intended for doctors and lawyers, address issues related to life support, durable powers of attorney and the like. These are valuable pieces of information, but they don’t cover the things people say when you ask questions about end-of-life decisions.
What we’ve found is that most peoples’ first response to those questions is to say they want their family nearby. Or they’ll say they want to be at home or have their spiritual needs addressed. Those things are not part of most living wills.
Another issue, many people feel they don’t have the credentials to start this conversation because they’re not doctors or lawyers. We want them to know they do have the credentials to talk about this, to make these decisions and to write them down.
PM: We’ve seen a lot of people switch to Five Wishes because it says what they want to say. It’s an instruction book for what good caregiving means to a person, not just a boilerplate legal form. We also think it provides for better conversations about death and dying.
And it covers the legal bases. Aging With Dignity worked with the American Bar Association to develop Five Wishes, and the form currently meets legal requirements in 42 states.
PM: Residents in those eight states can still use Five Wishes, but they also have to complete a state form for advance directives to cover legal bases. That trend has been changing over the past decade. Originally, Five Wishes was valid in 32 states but is now valid in 42. The remaining states need to revise their statutes or receive an opinion from the state attorney general that expands the opportunity for residents to put end-of-life decisions in their own words.
When these states do change their statutes, the process for using Five Wishes becomes even easier. Families will have greater access to it. That means more people will be having these conversations, and fewer families will be taken by surprise.
PM: Completing a living will through a lawyer can cost anywhere from a few hundred dollars to a few thousand. It’s appropriate to talk to a lawyer about advance directives, and it’s often part of the discussion for people working on wills and trusts. But many people think of this as a barrier–they assume they have to have a lawyer, and be able to afford one, to complete a living will.
As a non-profit, Aging With Dignity originally offered Five Wishes for free. But to cover some in-house costs, we had to put a price on it. Today, individuals can complete Five Wishes for $5. Any group that distributes 25 copies or more can obtain those copies for $1 a piece.
PM: Talk to their families, especially the person named as their health care agent (wish number 1). They should also make copies of the form, and bring it to their doctor at their next visit. This can be a regular check-up or another type of appointment. It doesn’t have to be a special visit. Also, give a copy to their attorney, if they have one, so that it’s filed with their other legal papers.
Most importantly, let trusted family members know where the original copy is stored. We recommend people keep it in their homes, in the same place where they store other important papers. Putting it in a safety deposit box is not recommended because it limits access to the document. Five Wishes is not something people should keep secret from their families.
PM: People describe Five Wishes as a gift. It’s a gift their parents or grandparents have given to the family. It helps eliminate guesswork at a very somber, stressful time and avoid family conflicts. When families are given guidance about end-of-life decisions, their loved ones don’t spend time arguing about their wishes.
Some of the best stories we’ve heard relate to family conversations. In one case, we had a family that gathered grandparents, parents and adult grandchildren for the purpose of completing Five Wishes. It wasn’t just grandma and grandpa who were expected to write down their wishes, but everyone in the room. And they invited some friends to serve as witnesses to the documents.
We also hear about personal decisions. There was a family whose father was nearing the end-of-life, and one of his wishes was to have his favorite afghan at his bedside. That’s something family members may not have thought of otherwise.
That’s what Five Wishes is about. Simple wishes coming true.
Do you have experience with Five Wishes or other living wills? Please share your comments below.