Matters of life and death: Making decisions now will help loved ones in future
(MCT) About one in three Americans say they have given a great deal of thought to their wishes for end-of-life treatment, a recent Pew Research study says. But have they told their loved ones about those wishes?
Marketing exec Tracey Pierce’s parents did. It came up as Pierce was driving her California-based parents, in town for a Thanksgiving visit, to her home in Rochester Hills, Mich. Pierce was complaining about traffic, but also telling them about her new job in public relations with Hospice of Michigan. That’s when retired advertising exec Seymour “Skip” Roberts started the conversation that many families dread.
“I think we might want to do ‘the Talk,’ he told his oldest daughter. And thus opened the door to a conversation about end-of-life issues concerning medical treatment and funeral wishes.
Recent headlines offer examples of the need to have a difficult talk with ourselves and those we love about end-of-life medical treatment.
In Texas, a pregnant brain-dead woman is being kept on life support, against her husband’s wishes. Marlise Munoz, a onetime paramedic, apparently suffered a pulmonary embolism when she was 14 weeks pregnant, and the hospital contends Texas law bans it from discontinuing her life support because a pregnancy is involved, even though there’s a family directive to do so.
It’s never easy to talk about issues surrounding death. But recent events, like the Munoz case in Texas, show it’s necessary.
Research shows that more and more Americans are exploring the difficulties of end-of-life questions. About 37 percent of Americans have given “a great deal of thought” to their end-of-life treatment, up from 28 percent in 1990, according to a Pew Research Center survey released in November. About 35 percent said they’ve given the issue some thought, while 27 percent say they haven’t given it much or any consideration. About 35 percent, however, say they’ve put their wishes in writing.
HELP WITH PLANNING
There’s a push nationwide by a variety of groups to bring attention to end-of-life planning. Groups such as AARP and the Area Agencies on Aging are promoting awareness of the need for such planning.
Frances Shani Parker, a retired Detroit school principal who sits on the board of Wayne State University’s Institute of Gerontology, has made it known in a will that she wants her body donated to WSU medical school. Parker’s mother set an example for advance planning, writing instructions for what she wanted to wear in death and assigning Bible verses to be recited at her memorial.
As a longtime hospice volunteer in the city, Parker said people shy away from the discussion because they have a fear of death, or don’t want to think of losing loved ones, or contemplating their own mortality. Or they think it’s too early because they’re not sick.
It’s those oft-unspoken fears she encountered in her hospice work that inspired Parker to write “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” (Loving Healing Press in paperback on Amazon and e-book editions, $19.95).
“I can’t emphasize enough to people about the trouble you’re going to spare the people you leave behind,” by talking and planning ahead, said Parker, whose book aims to help African-American communities handle end-of-life issues.
She selected a surrogate decision-maker, giving health care power of attorney decision-making to a friend in case she can’t make medical decisions for herself. She has completed a living will, where she has specified end-of-life treatment options her friend could carry out. For example, if death is imminent, Parker said she would not want to be resuscitated. She has given copies of the papers to her friend and to her doctor, and had them placed in her medical records.
“You don’t want it to be in a safe deposit box where nobody has it,” said Parker. “You also want a person who will speak up, because there are cases where they can be ignored.
“I have my own obituary done,” said Parker. “It may be surprising, but there are people who want to have everything done.”
DISCUSS PLANS WITH FAMILY
Skip and Carol Roberts, native Detroiters who relocated to San Diego two years ago, decided they wanted to be in that category. When they recently visited their daughter, Tracey Pierce, they got down to business.
“We had the will, we had the do-not-resuscitate order in our files. But I don’t think we ever sat down and had a formal discussion about what to do, where to go and what we wanted,” said Skip Roberts,79, a former managing partner of what is now the Doner Co. advertising agency.
Tracey had joked with her parents before that she knew what they wanted — “I’m going to pull the plug,” she told them.
While that’s a lighthearted retort to deal with a sensitive issue, Roberts said he and his wife are clear-sighted about the end.
“I’m very aware of those things,” said Roberts. “There are heroics that can be offered that might not sustain life much longer or sustain a not very pleasant life.”
“We are both emotionally adaptable to that we would rather go to our demise than having children looking over inert bodies hoping that some miracle would happen,” he said.
Their daughter said she now has a clear direction about how to follow through.
“It validated that I had a good handle on their wishes. This is pretty serious stuff. It clarified where all the documentation was. In a time of crisis, we’re not always thinking straight. And now I have a list of where everything is and what they want, in my lockbox at home,” said Pierce, 51.
Her parents also made it clear that when they die, they prefer cremation rather than returning to metro Detroit in caskets.
“I found out my mom’s real dream is to send the kids with her ashes to Thailand, which is her favorite place on Earth,” said Pierce. “That’s her happy place.”
A GROWING FIELD
Mary Foerg, a senior education specialist for Hospice of Michigan, said the organization sends end-of-life-planning educators to dozens of workplaces and church groups a year.
“It’s a much more integrated topic than when I got into this work. … It’s much less taboo,” said Foerg.
She attributes part of that to the swell of baby boomers, those born between 1946 and 1964 who’ve watched their parents and grandparents die and “who are probably questioning what we’ve always done.”
There’s greater need for this planning now — a time when family members often live far apart, when family sizes are smaller and when people with chronic health problems are living longer.
“We live a much longer percentage of our lives, many of us, in a state of protracted debility and decline,” said Foerg.
Foerg said fears of hospice or end-of-life care issues are more prevalent among minority groups, such as African Americans, because historically they’ve been underserved and had less access to care by the medical community.
“The perception there is that hospice is a withdrawal and lessening of care, when instead it’s a different kind of care,” said Foerg.
Dr. Maria Silveira, a palliative care specialist at the University of Michigan Hospital and the Veterans Administration Medical Center in Ann Arbor, has conducted research on who prepares advance care directives. The willingness of elderly patients to sign end-of-life directives care has grown from about 30 percent in 2000 to 60 percent in recent years, and Silveira expects upcoming research to peg the percentage even higher.
“More people are completing the forms and more people are having the conversations with their physicians,” said Silveira, who also attributes the change to the impact of baby boomers.
“They are more comfortable talking about death. And they have had a lot of exposure in the media to the cases of other baby boomers, who have chosen to take control of their death and dying, and the controversies as well,” said Silveira.
OPTIONS TO ADJUST
The conversations about these topics don’t have to be set in stone. Decisions can change, and Silveira advocates that they do, depending on the illness and prognosis a loved one may face.
“The first thing is that everybody should make their physician aware of who they trust the most and should speak on their behalf if he or she can’t,” said Silveira. “If you inform your doctor about who you choose to be your surrogate, that’s going a long way.”
About 30 percent of the elderly population will need a serious medical decision made and lack the ability to make it, Silveira said. Designating a medical surrogate through medical power of attorney is especially necessary for those who are from broken or alienated families, are single or have a same-sex partner in states such as Michigan that don’t recognize gay marriage, or those who don’t have children, Silveira said.
“Your surrogate decision-maker should be someone who has the same values, understands those values and how you would think in certain situations,” said Silveira. “I can’t tell you how many times I go into the ICU for patients who don’t have an inkling about who should be their surrogate decision-maker.”
Silveira thinks it’s getting easier to start the conversation, but she knows how difficult and emotional it can be.
Her tip: Rather than “I’m worried about death,” tell your loved ones something more mundane, such as “I’m trying to get my affairs in order.”
Merilynne Rush, a registered nurse and longtime midwife, is the host of monthly Ann Arbor discussion groups dubbed Death Café — a movement modeled on salon-style exchanges. The monthly discussions, which began in late 2012, have no specific topic or instruction, other than for participants to talk about dying. Peoples ages 14 to 84 have been drawn to the talks, although Rush says more participants tend to be women in their 50s.
“Friends are beginning to die. Parents are dying. We want to do things differently,” says Rush, who is 54 and helps people arrange home-based, eco-friendly funerals. “People appreciate the chance to open up and tell stories about death in a positive way.”
She said participants also realize that they need to plan and talk with loved ones about life’s end.
“You have to do everything you can to prepare ahead of time to do what you want,” said Rush.
Hospice of Michigan: www.hom.org/about-2/media/have-you-had-the-talk
Frances Shani Parker’s blog about end-of-life issues hospiceandnursinghomes.blogspot.com/
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