by Jonathan Scott
Barbara Malley knew her father was dying. She and her mother were with him in his small room, struggling with the inescapable feeling of helplessness. It was simply a matter of time. But in those last, painful few minutes, Barbara had done something that was heroic, even though in the moment it was only a blind act of love. She had invited her seven-year old son, Paul, into the room.
“I remember sitting on the edge of his bed,” Paul Malley now remembers. “We were helping Grandpa Earl drink a soda. I knew there wasn’t anything we could do to make him well or to fix the circumstance. But he always had a big smile on his face when he saw me, and I hoped that being together with him would make him happy. I told him I loved him.
“Even at that early age I understood that my presence had been a simple way to affirm my grandfather’s dignity and let him know he wasn’t alone. And I saw that it mattered a lot.”
When Malley finished college he came into contact with an attorney named Jim Towey. Towey had worked with Mother Teresa and spent a year living in the hospice she ran in Washington, DC. Deeply affected by his experiences, Towey felt that the legal documents we know as living wills and advance directives weren’t able to encompass the intensely personal side of end of life issues.
Towey had founded a non-profit organization called Aging With Dignity, an organization that Malley joined in 1998, and of which he is now President. Of all the activities of Aging With Dignity, the one with the highest profile is certainly The Five Wishes.
The Five Wishes is a lengthy but completely accessible document, legal in 42 states, including North Carolina. Any person over 18 can use or edit its pre-written format to express what he or she would like to happen—and how they want to be treated—at the end of life. Comparing a standard living will (dealing with beneficiaries and life-support issues) to The Five Wishes is a little like comparing a mannequin to a live person. The first gets across the basic idea. The second recognizes what it means to be human.
Regardless of our professed religious faith, even if none, all of us carry a personal concept of the meaning of life.
All of us have an emotional life. And even the most hardened curmudgeon lives in an interconnected web of social relationships. These things are essential throughout our lives and none the less so at the end. But they are usually missing from most standard advance directives.
By this time you might be curious what exactly what The Five Wishes are. We can’t reproduce the entire ten page document here, nor can we do it justice in a summary. But here are the “Wishes” themselves along with brief explanations.
Wish 1: The Person I Want To Make Health Care Decisions For Me When I Can’t Make Them For Myself
This is the basic information in what’s called a Health Care Power of Attorney document. But The Five Wishes allows you to further define, limit, or expand what you want your Health Care Agent to do, including release of your personal information and involvement with your financial and insurance matters.
Wish 2: My Wish For The Kind Of Medical Treatment I Want Or Don’t Want
Here you can explain exactly what “life support” means to you — rather than deferring to how it’s legally defined. You can express when and how you want medical treatment to proceed.
Wish 3: My Wish For How Comfortable I Want To Be
There’s more to the meaning of “comfortable” than simply pain medicine. Would you like to be read to, even if you are unconscious? How important would your personal appearance at that time?
Wish 4: My Wish For How I Want People To Treat Me
Some of us might want clergy—or possibly member of our faith community—to be with us. Others might prefer just family intimacy or to spare the family entirely. Many people wish they could spend their final hours at home.
Wish 5: My Wish For What I Want My Loved Ones To Know
This portion includes an area for someone to indicate wishes for a funeral or memorial service. But it also allows someone to speak honestly and directly to those left behind in terms of the emotional and spiritual issues we all have, even those whose issues might not fit the common definition of spiritual.
It wasn’t very long ago that a woman (whom I’ll call Ella) came to the emergency room of one of our local hospitals complaining of shortness of breath. Quickly her condition began to deteriorate and, in the midst of her crisis, Ella gave the hospital permission to put her on a ventilator. That, sadly, was the last decision she ever made for herself.
Ella had a close companion for years, but the couple had never married. That meant his input wasn’t legally acceptable. Instead, the hospital reached out to Ella’s children from whom she had been estranged.
Confused by a landslide of feelings, the children had nothing on which to base making life and death decisions.
Their natural sense of undirected compassion led them to take the least guilt-provoking attitude they could, which was to keep Ella alive at all costs.
Unfortunately, Ella was being consumed by cancer. She suffered through long and difficult procedures and endured a great deal of pain, all the while unconscious and unable to communicate.
“I would never want to put someone in the position of making those decisions for me,” says nurse Jennifer Reid. Reid worked in the hospital when Ella was being treated. “I think she suffered unnecessarily. It was all very hard on the family since they had nothing to go on, nothing to tell them what Ella would have wanted. Because they had been estranged, they wanted more time with their mother. But I don’t know how much they were thinking of themselves and not the woman lying in bed in pain.”
Reid might be considered the archetypical product of Moore County. She went to school on a golf scholarship and later returned here to sell real estate. But when the father of her husband, Todd, was diagnosed with Stage 4 lung cancer, something remarkable happened.
“The hospice nurse who cared for him changed my life,” Reid says. “I knew that’s what I wanted to do. When I got home I told my husband I wanted to start volunteering with hospice. He said, ‘Just go back to school and become a nurse.’” So, at the age of 33, 12 years out of college, raising two boys, and all the while working, Reid went for, and achieved, her BS in Nursing.
“I worked critical care at Reid Heart Center (FirstHealth in Pinehurst) for two years, then for six months at Liberty Hospice as a case manager. I wound up crying a lot. That kind of work is emotional all the time. I couldn’t help taking my work home. So I went back to critical care, but I wanted to bring what I had learned as a hospice nurse to the hospital bedside.”
A self-professed life-long learner, Reid is currently enrolled in the Adult Gerontology Nurse Practitioner program through UNC-Greensboro. Her doctoral project, which will be completed in May 2020, is in End Of Life Planning. It was her initial research into the subject brought her head long into, of course, The Five Wishes.
“It’s written to be easy to understand,” says Reid. “And it’s simple to change. You can scratch through parts or add pages. I’ve seen people take the basic document and get really creative with it. When you’re done, you get it notarized and it’s a legal document.”
Last fall, Reid gave a presentation on The Five Wishes at the Moore County Senior Enrichment Center. Even as a strong proponent of the document, she was impressed at the response she received. “The audience was really engaged,” she says. “They asked great questions. It showed they understood how important all this is.”
According to research Reid has done for her doctorate, over three-quarters of Americans will have no part of decision making when they are the end of their lives. When Reid talks about this issue, she does so with the passion of a hospice case worker who couldn’t stop crying. But she also speaks with authority of an experienced healthcare provider.
“Forty percent of patients in our hospital at this moment,” she says, emotion clearly in her voice, “aren’t able to say what they want to be done with them.”
Paul Malley, the President of Aging With Dignity, lives with another memory of the end of life. When his grandmother was coming to her last days, Malley was in high school. On a weekly basis he visited her in the skilled nursing facility. “I knew she talked about her feet always feeling hot. Apparently well-meaning caregivers would bundle her up tightly and tuck her feet under the covers. So the first thing I would do was untuck her so her feet could stick out. That would give her a big smile. It might sound simple or hokey or meaningless, but I think it meant a lot to her—that I knew what she wanted.
“The most important thing for us at Aging With Dignity,” says Malley, “is for people to understand that, even though this is a difficult awkward conversation to bring up, it doesn’t have to be difficult.
The Five Wishes is there so someone can have this important discussion with their family and document it. Our hope is that each person becomes the champion in their own story.”
“The time to fill out The Five Wishes is when you’re healthy,” says Jennifer Reid. She has seen it time and time again. “When patients have an advance directive, things go so much better. It can be beautiful. It’s the way God intended death to be.”
The Five Wishes is about ten pages long plus cover. It includes a short, cut-out form that can be filled out and kept in a wallet to identify the owner as having completed the entire document and gives its location. It’s unavoidably true that none of us can know when it might be needed.
To explore more of the scope of The Five Wishes and to purchase copies, visit www.fivewishes.org.
Even though Nurse Jennifer Reid is currently busy working to complete her doctorate, she invites anyone who would like to know more to send her an email at firstname.lastname@example.org.