Teenagers Face Early Death, on Their Terms

By

Tumors had disfigured AshLeigh McHale’s features and spread to her organs. A year ago, AshLeigh, 17, flew from her home in Catoosa, Okla., to the National Institutes of Health in Bethesda, Md., with a thread-thin hope of slowing her melanoma.

One morning a social worker stopped by her hospital room. They began a conversation that would be inconceivable to most teenagers: If death approached and AshLeigh could no longer speak, what would she want those who surrounded her to know?

The social worker showed AshLeigh a new planning guide designed to help critically ill young patients express their preferences for their final days — and afterward.

If visitors arrived when AshLeigh was asleep, did she want to be woken? If they started crying, should they step outside or talk about their feelings with her?

What about life support? Funeral details? Who should inherit her computer? Or Bandit, her dachshund?

AshLeigh grabbed her blue and hot-pink pens, and began scribbling furiously.

When she died in July, she was at home as she had requested. Per her instructions, she was laid out for the funeral in her favorite jeans, cowgirl boots and the white shirt she had gotten for Christmas. Later, the family dined, as AshLeigh had directed, on steak fajitas and corn on the cob.

“I don’t know what I would have done if I’d had to make these decisions during our extreme grief,” said her mother, Ronda McHale. “But she did it all for me. Even though she got to where she couldn’t speak, AshLeigh had her say.”

AshLeigh McHale, center, gave her family detailed instructions about her final wishes, including those concerning her funeral.
AshLeigh McHale, center, gave her family detailed instructions about her final wishes, including those concerning her funeral.

A national push to have end-of-life discussions before a patient is too sick to participate has focused largely on older adults. When patients are under 18 and do not have legal decision-making authority, doctors have traditionally asked anguished parents to make advanced-care choices on their behalf.

More recently, providers have begun approaching teenagers and young adults directly, giving them a voice in these difficult decisions, though parents retain legal authority for underage patients.

“Adolescents are competent enough to discuss their end-of-life preferences,” said Pamela S. Hinds, a contributor on pediatrics for “Dying in America,” a 2014 report by the nonprofit Institute of Medicine. “Studies show they prefer to be involved and have not been harmed by any such involvement.”

There are no firm estimates of the number of young patients facing life-threatening diseases at any given time. Cancer, heart disease and congenital deformities together account for an estimated 11 percent of deaths among adolescents, about 1,700 per year. And many thousands live with the uncertainty of grave illness.

“If you are one of the children for whom this matters, or one of their parents, this is a huge opportunity,” Dr. Chris Feudtner, a pediatric palliative care physician and ethicist at the Children’s Hospital of Philadelphia, said of these conversations.

But shifting from hushed talks with parents to conversations that include young patients has met some resistance. Many doctors lack training about how to raise these topics with teenagers. Until recently, most clinical teams believed that adolescents would not understand the implications of end-of-life planning and that they might be psychologically harmed by such talk.

Sometimes when providers do make the attempt, parents or patients may abruptly change the subject, fearful that by joining in, they are signaling that they have abandoned hope.

Yet research shows that avoiding these talks exacerbates the teenage patient’s fear and sense of isolation. In a 2012 survey examining end-of-life attitudes among adolescent patients with H.I.V., 56 percent said that not being able to discuss their preferences was “a fate worse than death.” In a 2013 study, adolescents and parents described such directed family talks as emotionally healing.

Teenage patients can guide, even lead, their medical care, Dr. Feudtner said. But more important, including them in the discussions acknowledges a terrible fact that patient and family members struggle to keep from each other: the likelihood of death.

“Then people can be together, as opposed to alone,” Dr. Feudtner said. The teenage patient feels free to address intimate topics, including “the scariest aspects of the human condition — mortality and pain — but also love, friendship and connection.”

Karly Koch, 20, worshiping in Muncie, Ind. She has a rare genetic immune disorder, and has written about her end-of-life plans.
Karly Koch, 20, worshiping in Muncie, Ind. She has a rare genetic immune disorder, and has written about her end-of-life plans.

Creating a Legacy

Karly Koch, a college student from Muncie, Ind., has been treated for many serious illnesses, including Stage 4 lymphoma, all related to a rare genetic immune disorder. Her older sister, Kelsey, died of the condition at 22.

Last spring, Karly, then 19, developed congestive heart failure. Her renal arteries were 90 percent blocked. As Karly lay in intensive care at the National Institutes of Health, a psychotherapist who had worked with the family for years approached her mother, Tammy, with the new planning guide.

“Do we talk about dying?” Mrs. Koch recalled wondering. “Maybe Karly hasn’t thought about it — do we put it in her head?”

“We had already buried a child and had to guess what she wanted,” she continued. “So we wanted Karly to have a voice.”

Karly’s reaction? “She said it wasn’t like we were telling her something she didn’t already know,” Mrs. Koch said.

The guide used by Karly Koch and AshLeigh McHale is called “Voicing My Choices.” While there are end-of-life workbooks for young children and their parents, as well as planning guides for older adults, this is the first guide created for — and largely by — adolescent and young adult patients.

The intention was to create a way for them “to make choices about what nurtures, protects and affirms their remaining life and how they wish to be remembered,” said Lori Wiener, a social worker and principal investigator on the research that led to the planning guide.

Karly Koch with her mother, Tammy.
Karly Koch with her mother, Tammy.

In the two years since its introduction, more than 20,000 copies have been ordered by families and more than 70 medical centers from Aging With Dignity, the nonprofit that publishes it. “Voicing My Choices” has also been translated into Spanish, Italian, French and Slovak.

In straightforward language, the guide offers young patients check boxes for medical decisions like pain management. Another section asks about comfort. Favorite foods? Music? When visitors arrive, one option could be: “Please dress me, comb my hair and do whatever else is needed to help make me look like myself.”

What gives you strength or joy, the guide asks. What do you wish to be forgiven for? And who do you wish to forgive?

“These are the things that are important to know about me,” one list begins. AshLeigh, who would dance and sing down the aisles of Walmart, wrote: “Fun-loving, courageous, smart, pretty wild and crazy.”

Devastating disease can leave anyone feeling powerless, so a means to assert some control can be therapeutic. For adolescents, who are exploring and defining identity, Dr. Feudtner said, “you can express who you are, what you are and what you care about.”

Karly Koch with her family in Indiana.
Karly Koch with her family in Indiana.

By offering young patients opportunities to write farewell letters, donate their bodies to research and create rituals for remembering them, the planning guide allays one of their greatest fears: that they are too young to leave a meaningful legacy.

And so the ability to do it can galvanize them. Lauren Weller Sidorowicz received a diagnosis of metastatic bone cancer at age 18. Determined and outspoken, she joined a focus group of young patients at the N.I.H. whose opinions led to the creation of the planning guide. Days before she died in 2011 at age 26, Ms. Sidorowicz paged Dr. Wiener, frantic to include a final thought in a farewell letter.

To her grandmother, she wrote, “I hope there is potato salad in Heaven as good as yours.”

There are no standards for when and how to introduce a critically ill teenager to end-of-life planning; there are only intuition and experience. Many pediatric cancers have favorable prognoses, Dr. Feudtner said, and raising the topic prematurely may provoke anxiety and fear.

More often, though, doctors postpone the discussion too long, until the patient is too sick to take part. Dr. Maryland Pao, a psychiatrist at the National Institute of Mental Health who helped design the guide, recalled the despair of a mother whose dying son could no longer speak.

“I have no idea what he wants,” the woman told her. “He’s 17, but we never communicated about this.”

Dr. Wiener believes preparation should be done soon after diagnosis, but when the patient is stable. Exploratory talks, she said, become steppingstones, each readying the patient for the next one.

Still, providers encounter problems. “If the family doesn’t want to do it, you’re stuck,” Dr. Pao said. “There’s a lot of magical thinking — that if you talk about it, you’ll help them die.”

And sometimes teenagers themselves put up obstacles to having frank family discussions. Some young patients, for example, did not want Dr. Pao to tell their parents that they were ready to stop treatment. Rather than say as much to their heartbroken relatives, some will pour out their feelings on social media.

Erin Boyle, 25, had been treated for autoimmune disorders since she was 4. Last August, as she prepared for a stem cell transplant for leukemia, N.I.H. researchers asked whether she felt comfortable looking through “Voicing My Choices.”

Ms. Boyle completed most of the guide. At that time, she recalled, “the decisions felt theoretical rather than imminent.”

But shortly after the transplant, she relapsed.

“It was comforting to get my wishes down on paper and free myself to live without worrying about the details of dying,” she said recently.

She died on Wednesday. Her body is going to the N.I.H. for a research autopsy, as she wished, her mother, Ellen, said.

For doctors, end-of-life discussions with adolescent patients can be wrenching. “You have to be self-aware and reflect on your own experiences with grief and loss,” Dr. Pao said. “It’s hard not to be anxious if you have children. You feel helpless. It makes you face your own mortality.”

Ms. Koch on her way to have blood drawn.
Ms. Koch on her way to have blood drawn.

On July 25, Karly Koch had an experimental bone marrow transplant. Her family calls that date her “re-birthday.” With 12 medications a day and a surgical mask, she is out and about in Muncie.

Karly takes classes to become a physical therapy assistant. She is a youth leader at her church, where her boyfriend is also a member. She delights in “normal people” activities.

Her parents keep Karly’s copy of “Voicing My Choices” in their bedroom cabinet. “It isn’t gloomy to go through,” Karly said. “It’s kind of fun to get your feelings out there.”

“Now, looking at it,” she continued, “I think I’d like to add some things.”

Complete Article HERE!

LA’s Korean “Well-Dying” Program Counters End-of-Life Planning Taboo

By Nicole Chang

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LOS ANGELES–Last June, terminal brain- cancer patient Brittany Maynard, age 29, ended her life after moving from California to Portland, Ore., to take advantage of that state’s “death with dignity” law allowing for physician-assisted suicide in restricted cases.

Given six months to live, Maynard announced her wish to end her life in a YouTube video that placed her in the national spotlight. In Oregon, after terminally ill patients have their assisted suicide request approved by two physicians, they can choose to take a fatal prescription provided by a doctor.

Unlike Maynard, most people face the end of their lives in old age. Although very few people at any age wish for doctor-assisted suicide, everyone hopes t0 die with dignity in the 21st century, when modern science promised to extend average live expectance to 100 years–but can also prolong death artificially.asians live long

“James,” who asked not to be identified, recently spoke to a group of reporters at the at the Cedars Sinai Medical Center’s Supportive-Care Medicine Program in West Los Angeles. The program provides palliative and hospice care to very sick or terminally ill patients.

The program helped James to spend his time with his wife, a terminal cancer patient, and prepare for her death, especially during her last 10 days. He recalled, “My wife used to say often that she wanted to pass away peacefully. Now I am satisfied that she did so, having spent the remaining time with her loving ones like family, friends and relatives.”

When his wife’s breast cancer spread to her brain, she chose to enter the hospital’s hospice program, rather than begin painful and difficult chemotherapy, which offered little help in her case.

Shedding a tear, James said, “All my wife got was just medication to reduce her pain, and she had a peaceful period before death.”

Koreans Choosing Hospice Increasing

Koreans who choose the hospice services are increasing gradually. John Kim, who was given three-to-six months to live due to stomach cancer, also chose hospice services instead of chemotherapy. Hospice staff visited his apartment every other day to control his pain and nutritional status.

Kim said, “At first, to live even a little bit longer, I considered medical treatment, but then I realized that I do not want to waste my time getting chemotherapy that would not make me live longer.” Instead of being weakened by the chemotherapy, he said, “I would like to finish what I have to do before death, being with my children and friends.”

Kim’s oldest daughter, 44-year-old “Karen,” (not her real name) said, “ I didn’t agree with my father’s decision, but now I get comfort when I see his relaxed face.”

Karl Steinberg, MD, Chief Medical Officer, Shea Family Health in San Diego, explained, “People tend to regard hospice as a place you visit before you die, but actually, you can get the hospice care either at home or a hospital.”

Steinberg continued, “While in hospitals, doctors put a priority on getting rid of cancer and then pain; hospice staffs do the opposite. Experts prescribe differently according to the person and his symptom to abbreviate the pain. They help patients keep their dignity until the last moment before facing death.”

The Somang (Hope) Society

Koreans in Los Angeles are changing perceptions of hospice care partly because of the “well-dying” campaign of the Somang (Hope) Society, which was founded in 2007. The nonprofit’s president, Boonja Yoo, started the “well-being” movement to inform older adults how to live well, and the campaign evolved into the “well-aging,” to help people better prepare for life after retirement. Eventually, the group also launched the “well-dying” campaign inform older people how to prepare for death.

“Personally,” Yoo revealed, “as my husband and brothers passed away, I realized the more you prepared for death, the more beautifully you can finish your life.”

Yoo, who been awarded the South Korean government’s National Magnolia Medal for her international efforts in drilling water wells in remote areas and early childhood education, decided to develop the well-dying campaign based on her 20-year career as a nurse. She saw many patients at the end of their lives, as well as their family members, while she worked at a hospital, caring for burn patients, and at a nursing home.

She explained that the well-dying program is assisting Korean seniors to develop living wills, in which people can make legacy statements about their life lessons and values; their funeral preferences; possible organ donation; and advance health care directives, instructing other about their treatment near death, in case a coma, dementia or other problem prevents them from stating their wishes.

Advance-care planning is not only for patients, but also for their family. The number of living-will testaments and advance directives written so far is about 9,300. Also, 750 people have volunteered to be organ donors when they die. And 28 who died actually had their organs save the lives of others.

Unfortunately, Yoo said, Koreans are deterred from planning by their “taboo culture of death.” For example, she went on, “There are many people who die too painfully at the hospital because they didn’t really know much about the hospice service that can helps die without pain.”

Yoo explained, “People should not prepare for death by themselves, but plan with their family, as well.” Even though death is never an easy subject, she said, “I still expect that more Korean people could finish their life beautifully, as if they prepared for trip.
Complete Article HERE!

Too many African Americans plan too little for death, experts say

By Hamil R. Harris


Lynne T. McGuire, president of McGuire Funeral Service Inc in D.C., said keeping up with important documents is critical to prepare for death.

Brandi Alexander was relieved when she got the news that her father’s cancer was in remission in 2003. Neither she nor her five siblings subsequently took the time  to talk with their father about his final wishes in the event he became ill or died.

But in November 2010, Alexander flew home from Denver to New Orleans for Thanksgiving and learned that her father’s cancer had returned. Less than two months later, Ferdinand Alexander was dead.

“”When my father came out of remission, he declined very quickly and none of us knew what he wanted,” Alexander said. “I had never had a conversation with him. I had all of this knowledge about end of life things but I had never talked to my own father who had a terminal disease. He was remarried and his new wife was making all of the decisions.”

Alexander’s comments came at the conclusion of a forum entitled “The Journey Home: An African American Conversation,” in which senior citizen advocates, morticians, pastors, financial planners and even an emergency room physician came together at SunTrust Bank to talk about death, dying and end-of life choices.

“My father had six kids and we didn’t agree with his wife, who had the power of attorney. And instead of honoring his life we were battling about his death,” said Alexander, regional campaign & outreach manager for Compassion & Choices, an end-of-life advocacy group that used to be known as the Hemlock Society.

While talking about death and dying is almost taboo in the African American community, Daniel Wilson, national director of Compassion & Choices said, “We have to look at the whole spectrum of what end-of-life looks like, from the point of diagnosis to what you need to look for when you are choosing a physician to should I go to hospice.”

John M. Thompson, director of the D.C. Office on Aging, said,In the District of Columbia we have 104,000 seniors and coming to an event like this is so important not only for the seniors but for their caregivers and the young to understand how to properly plan for the future.”

“Who’s going to be responsible for executing that will, if mom and dad dies?” Thompson said. “This is a chance to have a peaceful ending for mom and dad as they move on with life and live in harmony together.

Dr. Melissa Clarke, a local emergency physician, said, “I have been in too many situations where people have come in and based upon their age should have an advance health-care directive and it should be clear what should be done for them, but it’s not.”

Lynne T. McGuire, president of McGuire Funeral Service Inc. in the District, said that she wishes that she could have the opportunity to talk with families before  someone dies. “It is bigger than just funeral planning. The whole end of life spectrum: How do I want to be cared for ? Folks are starting to talk about it, but we really do need documentation.”

For example, McGuire said the funeral home buried a woman who was 102 and learned too late that her husband who died 60 years ago, was buried at Arlington National Cemetery and there was space for her. “There was a grave reserved for her but it is too late.”

Tiffany Tippins, CEO of Impactful Wealth Solutions, said, “I think the biggest thing I see in planning for death is the lack of planning: Making decisions, letting someone know when you can’t speak for yourself and when you can act for yourself,  what do you want to happen.”

The Rev. Thomas L. Bowen, assistant pastor of the Shiloh Baptist Church in the District, said in the same way couples are offered premarital counseling, pastors need to offer counseling before people leave this earth. “A lot of times we as pastors are the first responders. When death comes, people say, ‘Lord, what am I going to do,’ then they call the preacher and say, ‘what am I going to do.’”

Complete Article HERE!

Achieving a Good Death

When a patient’s death is inevitable, there are three important things a doctor can do.

Nora Zamichow: Be honest about the end of life

Many of them will go to great lengths — even subterfuge — to avoid it.

Sure, nobody likes to deliver bad news. But shouldn’t physicians have mastered that?

In a recent study of doctors whose patients were dying, only 11 percent said they personally spoke with their patients about the possibility of death.

My husband, Mark, who died at 58, had an inoperable brain tumor. Yet at no time did any doctor look him in the eye and tell him he was going to die. They did tell him, at least initially, he could probably live another five years.

Eventually, doctors spouted euphemisms that even I, a former medical reporter, couldn’t decipher. Or they hinted, saying, “Treatment isn’t going our way,” without ruling out the possibility it might go “our way.” Finally, toward the end, doctors said, “Soon consider hospice.”

Doctors say it can be hard to predict the timing of death. Or that they don’t want to squash hope in a patient and family. Or that they don’t have time for the kind of conversation that must occur when they forecast death.

When a doctor actually told me my husband was dying, I asked her to tell Mark, thinking he might have questions I would be unable to answer. She scuttled off to his hospital bedside and returned so quickly I knew no conversation had taken place. He was sleeping, she said.

Instead, I told Mark.

I learned my husband was “failing to thrive” when I was asked to attend a meeting in a conference room at the University of California, Los Angeles’ intensive care unit with five doctors. I had briefly met one doctor. I didn’t know the others. The topic of the meeting, I was informed, was the treatment plan for Mark.

Weeks earlier, Mark had been diagnosed with the tumor, which could be treated with radiation and chemotherapy. Back then, the talk was about winning more time for Mark.

At the conference room meeting, no one actually used the word “dying.” They said they could no longer help him. One doctor advised hospice. I felt like the air had been knocked out of my lungs. No one had hinted previously that my husband’s situation was so dire. Instead, we had been told about people who managed to live years with a brain tumor.

I had seen Mark’s UCLA oncologist just two days earlier. He had been optimistic, offering several treatment suggestions, cheerily informing me he was heading off on vacation and would see us on his return.

I called our family doctor.

“Your oncologist has not leveled with you,” she said.

Those are words no one should have to hear.

I understand it’s not easy to tell someone he’s dying. When I told my husband, he said:

“That was not the deal.”

He was not ready to die. Before his diagnosis, my husband had regular physicals showing he was healthy. He ran his own public relations business and delighted in his four children.

What happened, we wondered. Why didn’t we know Mark was dying until white-coated strangers sitting in a conference room told me? Was it our obstinate desire to cling to every shred of hope in spite of evidence to the contrary?

I don’t think so.

In recent decades, technology has advanced so significantly that the art of diagnosis has changed. Doctors no longer count on in-depth conversations with patients eliciting intimate details about symptoms. Instead, they consult a battery of test results and scans.

And electronic medical records have meant that doctors are often typing their notes as they talk with patients. “The technology has become incredibly complicated,” said one oncologist. “Intangible things get lost, like talking to patients.”

The crunch between technology and communication is most apparent at the end of life. It is reflected, in part, by how we train doctors. In four years of medical school, the average amount of instruction on death and dying is 17 hours.

In 2013, only three of 49 accredited schools of public health offered a course on end-of-life care. Students do not learn more about dying, one report says, because death is a medical failure.

In effect, we have created a medical system that treats death as a separate event having nothing to do with life.

In my husband’s case, we resigned ourselves to death. Unlike our doctors, we talked and talked about it. On my daughter’s first day of fifth grade, my husband entered hospice.

I began reading to Mark about death, mostly essays and poetry. We speculated about dying, what it would be like.

Initially, we thought hospice staff could give guidance. But when my husband rolled his eyes at one social worker, I realized we would tackle this as we had much else in our marriage: winging it and together.

In my husband’s final weeks of life, he wanted a hamburger and fries every day. He spoke less and less. Yet he was still the wordsmith. When I bumbled at pronouncing the word “schadenfreude” (glee at another’s misfortune), he raised one eyebrow and corrected me.

One afternoon, he ate only a bite of his burger, then asked me whether it was possible to have hamburger juice. I began breaking his pills into smaller pieces.

The next morning, I found my husband smiling at the ceiling and asked what he was smiling at. “Death,” he said. I found it oddly comforting.

Mark died three days later.

Zamichow is a Los Angeles journalist and former Los Angeles Times staff writer who wrote this for the newspaper.
Complete Article HERE!

NPR host Diane Rehm emerges as key force in the right-to-die debate

Diane Rehm and her husband John had a pact: When the time came, they would help each other die.

John’s time came last year. He could not use his hands. He could not feed himself or bathe himself or even use the toilet. Parkinson’s had ravaged his body and exhausted his desire to live.

“I am ready to die,” he told his Maryland doctor. “Will you help me?”

The doctor said no, that assisting suicide is illegal in Maryland. Diane remembers him specifically warning her, because she is so well known as an NPR talk show host, not to help. No medication. No pillow over his head. John had only one option, the doctor said: Stop eating, stop drinking.

So that’s what he did. Ten days later, he died.

For Rehm, the inability of the dying to get legal medical help to end their lives has been a recurring topic on her show. But her husband’s slow death was a devastating episode that helped compel her to enter the contentious right-to-die debate.

“I feel the way that John had to die was just totally inexcusable,” Rehm said in a long interview in her office. “It was not right.”

More than 20 years after Jack Kevorkian jolted America with his assisted-suicide machine, Rehm is becoming one of the country’s most prominent figures in the right-to-die debate. And she’s doing so just as proponents are trying to position the issue as the country’s next big social fight, comparing it to abortion and gay marriage. The move puts Rehm in an ethically tricky but influential spot with her 2.6 million devoted and politically active listeners.

Now 78 and pondering how to manage her own death, Rehm is working with Compassion & Choices, an end-of-life organization run by Barbara Coombs Lee, a key figure in Oregon’s passage of an assisted-suicide law and a previous guest on the show. Rehm will appear on the cover of the group’s magazine this month, and she is telling John’s story at a series of small fundraising dinners with wealthy donors financing the right-to-die campaign.

If asked, she said she would testify before Congress.

Rehm’s effort comes less than a year after Brittany Maynard, a 29-year-old woman suffering from terminal brain cancer, moved to Oregon to legally end her life, giving the issue a new spin. That she was young and beautiful helped proponents broaden their argument, making the case that it is a civil right, not just an issue for graying Baby Boomers.

The Maynard case prompted a surge of activity among state lawmakers pursuing so-called death-with-dignity laws, including in Maryland, New York, Florida, Kansas, Wisconsin and the District. Progressive politicians and voters say the country is ready for the conversation.

“Kevorkian was before his time,” Rehm said. “He was too early. The country wasn’t ready.”

Public opinion on the issue depends on how it is described, according toGallup, which has found strong support for doctors helping patients end their lives “by some painless means,” but a far slimmer majority in favor “assisting the patient to commit suicide.” Not surprisingly, groups such as Compassion & Choices studiously avoid using the word suicide.

Laws granting the right to die exist in only three states — Oregon, Washington and Vermont. New legislation faces staunch opposition from religious groups and the medical establishment.

In Massachusetts and other states where legislation has failed, proponents faced well organized public campaigns from the Catholic church, whose American bishops call suicide a “grave offense against love of self, one that also breaks the bonds of love and solidarity with family, friends, and God.”

Pushback from the American Medical Association has been equally fierce, with the organization saying that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

Both sides of the debate see Rehm’s entry into the debate as an important development.

“She brings gravitas, she brings her experience and she brings a level of reason and sanity to this discussion that is severely lacking when you look at the opponents of death with dignity,” said Howard Ball, a University of Vermont political scientist and author of “At Liberty to Die: The Battle for Death with Dignity in America.”

Ira Byock, a palliative care physician and vehement opponent of assisted death, has argued against the movement on Rehm’s show. Though he credits her for having him on, he said her story and influence distracts from the conversation the country should be having about improving end-of-life care.

“It sucks all of the oxygen out of the room,” he said.

‘I don’t want comfort’

They met in 1958. John was a lawyer at the State Department. Diane was a secretary.

“Physically, she was a knockout,” John wrote in a book they published about their marriage. But there was more. “It became clear, for example, that Diane had a fierce intellectual curiosity.” She never went to college, but had a copy of “Brothers Karamazov” on her desk.

Diane recalled his crew cut, his physique, his own intellectual curiosity.

“We loved taking long drives into the countryside,” Diane wrote, “and then going out for pizza and wine at Luigi’s, talking about our dreams, our fantasies, our attraction to each other.”

They wed and had two children, but marriage wasn’t as easy as falling in love. John was a loner, a workaholic. Diane was more outgoing, centered on family. They disagreed about so many things, nearly breaking up.

One thing they agreed on: Death.

“We had both promised each other we would help each other when the time came,” Diane said, “if there was some incurable or inoperable disease.”

The end of John’s battle with Parkinson’s last June was that moment. They had a meeting with his doctor. Their daughter, Jennifer Rehm, a physician in the Boston area, listened on the phone. She said, “Dad, they can make you comfortable.” Her father replied: “I don’t want comfort.”

The doctor made it clear he couldn’t help, but offered the self-starvation option, which the Supreme Court has ruled legal. John, living in an assisted-living community, didn’t immediately make the decision. The next day, Diane went to visit.

“I have not had anything to eat or drink,” he told her. “I have decided to go through with this.”

“Are you really sure?” Diane asked.

“Absolutely,” she said he told her. “I don’t want this.”

Diane stayed by his bedside. A couple days later, he went to sleep, aided by medication to alleviate pain. She read to him, held his hand, and she prayed.

“I prayed and prayed and prayed to God, asking that John not be suffering in any way as his life was ebbing,” she said.

Like his wife, John was Episcopalian, a church that has passed a resolution against assisted suicide and active euthanasia. She didn’t think God minded very much.

“I believe,” she said, “there is total acceptance in heaven for John’s decision to leave behind this earthly life.”

As John edged closer to death and the end of their 54-year marriage, a priest friend came to visit. Diane got a glass of red wine for a service of Holy Communion next to her husband’s bed. She put a drop of red wine on his lips. The priest performed last rites.

She spent the night with him, and in the morning she went home for a quick shower. Then she received a call — come fast, he’s slipping away. She missed his death by 20 minutes. She is still angry about that. If he could have planned his death, she and his family would have been there.

“That’s all I keep thinking about,” she said. “Why can’t we make this more peaceful and humane?”

John donated his body to George Washington Medical School. At his memorial service, some 400 people packed St. Patrick’s Episcopal Church — journalists, academics, policy makers and religious figures, including Marianne Budde, bishop of the Washington Episcopal Diocese.

Diane returned to work not long after. She told her producers she wanted to do another show on assisted dying.

It wasn’t until the last few minutes that Rehm told listeners what her husband had done: “John took the extraordinarily courageous route of saying, ‘I will no longer drink. I will no longer eat.’ And he died in 10 days.”

Richard from Florida called in. “You have my deepest sympathies and empathies with the loss of your husband,” he said. And then: “I’ve got to get to the state that gives me the choice.”

Rehm said she knows that as a journalist, she must be careful.

“As strongly as I feel, I don’t want to use the program to proselytize my feelings,” she said. “But I do want to have more and more discussion about it because I feel it’s so important.”

Sandra Pinkard, Rehm’s producer, said she appeals to listeners, in part, because she is so open about herself. She and John discussed their marriage on the air. She detailed his struggles with Parkinson’s.

Rehm came back to the assisted death topic in late October after Brittany Maynard announced plans to end her life.

Byock joined her on the show, knowing, he said, that “on this issue, she is clearly an advocate.” Though she didn’t mention her husband, he said he had to be “very assertive” to counter the focus on Maynard’s undeniably dramatic case.

Still, he said he would go back on the program “in a heartbeat” because it’s becoming a forum for the debate.

“It’s people like her listeners that I want to talk to,” he said. “I am sincerely grateful for giving me access to her listeners.”

Her last moments

They still talk, Diane and John.

“I miss you so much,” she’ll say out loud, alone in her apartment. When President Obama awarded her the National Humanities Medal last year, she told John, “It just breaks my heart you weren’t there.”

She could hear his voice: “Don’t worry, I’m there.”

Wherever he is, Rehm has plans to join him. But she doesn’t intend to die the way he did. Shortly after John’s funeral, Rehm made an appointment with her doctor to talk about her death.

“You have to promise,” Rehm told the doctor, “that you’ll help me.”

The doctor, Rehm said, was “receptive” to the request. “I think over a period of time he or she would provide me, if I were really sick, with the necessary means,” she said.

Rehm can’t fathom being in the “position where someone has to take care of me. God forbid I should have a stroke, I want to be left at home so I can manage to end my own life somehow. That’s how strongly I believe.”

Like John, she is donating her body to GW medical school. Once students finish learning from her remains, her family will take her ashes to the family’s farm in Pennsylvania, spreading them near the same hickory tree that shades John’s ashes.

Rehm can vividly see her last moments. She is in her bed, at her home, unafraid.

“My family, my dearest friends would be with me holding my hand,” she said. “I would have them all around me. And I would go to sleep.”

Complete Article HERE!

If You Have Dementia, Can You Hasten Death As You Wished?

By Robin Marantz Henig

If you make a choice to hasten your own death, it’s actually pretty simple: don’t eat or drink for a week. But if you have Alzheimer’s disease, acting on even that straightforward choice can become ethically and legally fraught.

Dementia

But choosing an end game is all but impossible if you’re headed toward dementia and you wait too long. Say you issue instructions, while still competent, to stop eating and drinking when you reach the point beyond which you wouldn’t want to live. Once you reach that point — when you can’t recognize your children, say, or when you need diapers, or can’t feed yourself, or whatever your own personal definition of intolerable might be — it might already be too late; you are no longer on your own.

If you’re to stop eating and drinking, you can do so only if other people step in, either by actively withholding food from you or by reminding you that while you might feel hungry or thirsty, you had once resolved that you wouldn’t want to keep living like this anymore.

And once other people are involved, it can get tricky. Caregivers might think of spoon-feeding as just basic personal care, and they might resist if they’re asked to stop doing it — especially if the patient indicates hunger somehow, like by opening her mouth when she’s fed.

Conflicts between caregivers and the patient’s previously stated wishes can end up in court, as with the case of Margaret Bentley, which goes before the Court of Appeals in British Columbia on Wednesday.

Bentley, a former registered nurse, decided years ago that she wanted to stop eating if she ever became completely disabled. But she has now sunk so far into dementia that she needs other people to help her carry out her own wishes. And while her family wants her to be allowed to die, the administrators of her nursing home do not.

Back in 1991, Bentley wrote and signed a living will that said that if she were to suffer “extreme mental or physical disability” with no expectation of recovery, she wanted no heroic measures or resuscitation, nor did she want to be fed “nourishment or liquids,” even if that meant she would die.

Eight years later, at the age of 68, Bentley was diagnosed with Alzheimer’s disease. She lived at home with her husband John, as well as a live-in caregiver, until 2004, when she needed to be institutionalized.

For a while, according to her daughter, Katherine Hammond, the family hoped she would just die peacefully in her sleep. But as the years dragged on and Bentley got progressively more demented, her husband and daughter finally decided to put her living will into action.

By this time it was 2011, and Bentley was living at a second nursing home, Maplewood House, in Abbottsford, about an hour east of Vancouver. Aides had to do everything for her, including diapering, moving, lifting and feeding her. So the decision to stop giving her food and water involved the aides as well as the Fraser Health Authority, which administers Maplewood House.

Someone — Hammond is not sure exactly who — resisted the idea of denying Bentley the pureed food and gelatin-thickened liquids that were her standard diet, especially because she seemed to want to eat, opening her mouth whenever they brought a spoon to her lips.

That’s just a reflex, insisted Hammond, who made a short video showing that Bentley opened her mouth even when the spoon was empty. “There she goes again,” the daughter says on the video.

In early 2013, a Superior Court judge ruled that it was more than a reflex, it was an expression of Bentley’s desire to be fed; he granted the nursing home permission to continue to spoon-feed her. Bentley’s family appealed, resulting in Wednesday’s court hearing.

Death brought about by the cessation of eating and drinking might sound scary in prospect, but it’s said to be relatively painless if done correctly. Most of the discomfort associated with it, according to a pamphlet issued by the advocacy group Compassion & Choices, comes from trying to do it in increments. Even a tiny amount of food or water “triggers cramps as the body craves more fuel,” the group writes. “Eliminating all food and fluid actually prevents this from happening.”

They recommend lip balm and oral spray if the mouth gets dry, rather than sips of water that can introduce just enough fluid into the system to make the process harder. And they counsel patience. It takes about six days, on average, for someone who stops eating and drinking to slip into a coma, and anywhere from one to three weeks to die.

Scholars have been tangling for years with the moral quandary of how to treat people like Margaret Bentley, who indicate, while cognitively intact, that they want to kill themselves when they reach the final stages of dementia. (NPR earlier covered the story of Sandy Bem, a woman with Alzheimer’s who took matters into her own hands before that final stage.)

In a recent issue of the Hastings Center Report, a prominent journal of bioethics, experts were asked to consider the story of the fictitious Mrs. F., a 75-year-old with advanced Alzheimer’s living at home with her husband and a rotating cast of caregivers. Early in the disease process, Mrs. F. had been “adamant” about not wanting to end up profoundly demented and dependent. She told her husband that when she could no longer recognize him or their two children, she wanted to stop all food and fluid until she died.

Mrs. F.’s cognitive function “was beginning to wax and wane,” according to the description in the journal, when she finally decided it was time to stop eating. But occasionally she would forget her resolve — she was, after all, suffering from a disease characterized by profound memory loss — and would ask for food. When she did, her family reminded her of her previous decision.

But they were torn, as were the aides caring for her. Which Mrs. F. should they listen to: the one from before, who above all else did not want to become a mindless patient in a nursing home? Or the one from right now, who was hungry?

That’s the problem, really; part of what happens in a dementing illness is that the essential nature of the individual shifts.

“Mrs. F.’s husband was, to all appearances, acting out of goodwill in an attempt to honor his wife’s previously expressed wishes,” noted Timothy W. Kirk, an assistant professor of philosophy at the City University of New York, in his commentary on the case. “Doing so in a manner that conflicted with her current wishes, however, was a distortion of respecting her autonomy.” Kirk’s bottom line: If this Mrs. F., the one with the new, simpler identity, asks for food, she should get it.

As hard as it is to resolve moral quandaries like these, one thing is clear: they’ll be raised again and again, as the population ages and cases of late-life dementia soar.
Complete Article HERE!