June 23. 2018 9:38PM

Silver Linings: Bucket lists and frank talk can help maximize living near the end

By ROBERTA BAKER
New Hampshire Union Leader


Terminal lung disease hasn't stopped Susan Pratt, 66, of Concord, from living a full live. Last month, while hooked up to a rolling oxygen tank, she performed the wedding ceremony in her backyard for her niece, Meredith Pratt, and her now-husband Nicholas Desjardins of Williamstown, Vt. (Courtesy)

Silver Linings

Silver Linings is a continuing Union Leader/Sunday News report focusing on the issues of New Hampshire's aging population and seeking out solutions. Union Leader reporter Roberta Baker would like to hear from readers about issues related to aging. She can be reached at rbaker@unionleader.com or (603) 206-1514. See more at www.unionleader.com/aging. This series is funded through a grant from the Endowment for Health.


When Susan Pratt, 66, learned four years ago that terminal lung disease would claim her life, she forged ahead to fulfill the most important items on her bucket list. And they have become among the most meaningful events of her life.

She did genealogical research with her cousin, tracing their family tree back to 1743. She collected childhood pictures and made books for her three sisters, telling each what they've meant to her. She wrote her own memorial service based on an inspirational poem, "Footprints in the Sand," and compiled a PowerPoint presentation of her life's special moments.

Last month, in her backyard, while hooked up to a rolling oxygen tank, she performed the wedding ceremony for her 35-year-old niece from Vermont. "My gift to my niece was probably the biggest thing on my bucket list," Pratt said. "She gave me the greatest gift to be able to perform it."

Pratt also completed an advanced directive detailing her wishes to die naturally without lifesaving measures, and appointed a sister to make sure those wishes are carried out.

With a life expectancy of six months, Pratt is not maudlin about her approaching demise. She is one of a number of seniors with terminal medical conditions who are choosing to maximize living while death is at hand. They are connecting with loved ones in ways they'll remember and taking measures to ensure their end-of-life wishes are carried out by family members and health care providers.

As the state's baby boom generation continues to age, the number of seniors growing old in their communities is climbing, along with those needing hospice care. Improvements in technology and palliative or comfort-oriented treatments increasingly make it possible to sustain life, support a minimal life quality and minimize discomfort at home. New Hampshire's challenge remains finding enough caregivers to meet the rising demand, state officials and health providers warn.

Making decisions about how and where to spend your final days, and how you want to die are critically important, medical experts and caregivers say. For many seniors and their families, death and end-of-life planning remain emotionally loaded topics too uncomfortable to discuss - much easier to put off or avoid. And that can leave families grappling for answers, and seniors vulnerable to dying in ways they would never want.

Since May, Pratt has been in hospice care at home in Concord, requiring oxygen from a room oxygen concentrator or portable tank round-the-clock. In the end stages of interstitial lung disease, a form of pulmonary fibrosis, her increasingly rapid heart rate and labored breathing make it impossible to drive, walk distances, do household chores or take a shower without assitance. Licensed nursing assistants, home health aides, a visiting social worker and a pastoral counselor see to her needs daily or weekly.

Pratt, who served in children's ministry while living in California, relished writing her niece's wedding service, including words for her niece to say to her 8-year-old stepson, who walked her down the aisle: "I promise to love you and your father with all my heart, and raise you to be the fine young man that you'll become."

"This is part of me that I'll leave behind," Pratt said. "Even if we don't have terminal illness, we don't know what our time is and we all have loved ones at different stages of life. I try to spend time every day on what makes the most difference to me and those around me. Knowing ahead, I've been able to say what really matters in life and throw away the rest."

Meetings with her sisters to discuss her end-of-life wishes were difficult and tearful, she said, but the soul searching and sharing finally netted gratifying results; one sister remains in denial, but two others have embraced Pratt's desires out of love and understanding.

"A lot of people choose to ignore it (death), or tell themselves, 'You don't know when you're going to die.' I want them to be able to talk about the fact that they're dying and have feelings about it that they want to share." The problem is, said Pratt, "a lot of people are afraid to hear about it."

Susan Varnum, a hospice social worker with Concord Visiting Nurse Association, says the subject is particularly painful for families because they're the ones who will be left behind. "They're trying to wrap their minds around what my life will look like with this loss - how to pay bills, take care of the kids, go on without support of this loved one who's dying. They think, 'My child isn't going to have a grandfather.' The loss of the role that person played in your life, and how you're going to adjust" can be overwhelming, she said.

According to research by The Conversation Project, a Boston-based initiative to encourage conversations about dying and end-of-life wishes, 90 percent of those surveyed nationwide believe it's important to talk about death and end-of-life plans, but only 32 percent actually do it. 

Leanne Tigert is an interfaith chaplain, spiritual care counselor and hospice services manager for Concord VNA. "The research is that most adult children have never even had a discussion about burial or cremation with their parents," Tigert said. "People end up buying the most expensive casket they can buy. Doing less than that would be dishonoring their parents."

According to a recent survey by Health Affairs, a health care policy publication, only 1 in 3 adults nationwide have completed end-of-life documents including a durable power of attorney for health care, living will, or advanced directive - documents that give specific end-of-life instructions to medical providers, spell out your desires to receive or not receive treatments to prolong life and appoint a representative to communicate your wishes when you are near death, unconscious or unable to speak.

"The advanced directive is a road map that all of us should have," Dr. Kathryn Kirkland, a palliative care physician at Dartmouth-Hitchcock Medical Center, told the Tri-State Learning Collaborative on Aging at a meeting last week. "The most important feature is who will make decisions for me when I can't. If, at the end of life, I can't make decisions, here's the way I want it to go when I'm dying. It's not always clear at the end of life, where to draw the line, what is a minimally acceptable quality of life. Going on a ventilator may not be a good choice. Being on a feeding tube for a short time if you know you're going to be able to eat again is a good choice, even if the advanced directive says no feeding tube."

Appointing a health care agent or proxy is especially important in New Hampshire; if none is named, the law requires providers to work down a list of relatives, starting with the spouse and adult children, continuing through aunts, uncles and cousins - relatives increasingly distant.

"These people may not know your wishes, and you may not have known them well or at all," said Belinda Ray, program coordinator and health coach for the Honoring Care Decisions program, part of the Center for Shared Decision Making at Dartmouth-Hitchcock Medical Center. Sometimes long-term partners who aren't legal spouses end up at the bottom of the list, she said.