Half of US states consider right-to-die legislation

More than a dozen states, plus the District of Columbia, are considering controversial medically assisted death legislation this year.

assisted dyingThe laws would allow mentally fit, terminally ill patients age 18 and older whose doctors say they have six months or less to live to request lethal drugs.

Oregon was the first state to implement its Death with Dignity Act in 1997 after voters approved the law in 1994, and four other states — Montana, New Mexico, Vermont and Washington — now allow for medically assisted death.

As of April 10, at least another 25 states have considered death with dignity bills, according to Compassion & Choices, a Denver-based nonprofit organization that advocates for these laws. Some of those bills already have died in committee.

“The movement has reached a threshold where it is unstoppable,” said President Barbara Coombs of Compassion & Choices, who was also chief petitioner for the Oregon Death with Dignity Act.

The issue of medically assisted death rose to prominence last year with the case of Brittany Maynard, 29, who was told she had six months to live after being diagnosed with brain cancer. Maynard was a strong advocate for Death with Dignity, and when she learned of her grim prognosis, she moved from her home state of California to Oregon, where terminally ill patients are allowed to end their own lives.

“I would not tell anyone else that he or she should choose death with dignity,” she wrote in an op-ed on CNN.com. “My question is: Who has the right to tell me that I don’t deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?”

Maynard died Nov. 1 after taking a lethal prescription provided to her by a doctor under Oregon’s death-with-dignity law.

Many states have proposed these bills, which some advocates call right-to-die legislation, after Maynard’s eventual death in November of last year, but so far none of them have passed.

Coombs, whose organization worked with Maynard to “help carry her voice and her message,” credited Maynard’s advocacy with helping put the issue in the public eye, to the point where legislators are hearing from their constituents that this is a pressing need.

“Brittany Maynard’s death … made it a political issue for younger people, not just older people,” said Arthur Caplan, founding director of the Division of Medical Ethics at New York University Langone Medical Center’s Department of Population Health.A woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in Winnipeg

The issue has sparked debate with opponents who argue that, given the risk of mistakes or abuse, medically assisted death laws present more dangers than benefits.

“There is a deadly mix when you combine our broken, profit-driven health care system with legalizing assisted suicide,” said Marilyn Golden, a senior policy analyst with the Disability Rights Education and Defense Fund.

The possibility of patients being financially or emotionally pressured into a decision to end their own lives is also a major concern, Golden said.

“Assisted suicide automatically becomes the cheapest [treatment] option,” Golden said. “They [patients] are being steered toward hastening their deaths.”

Golden pointed out that the safeguards in place with the legislation in Oregon do not address certain issues, such as doctor shopping, where patients whose physician deems them unfit for lethal medication seek treatment with other doctors who might give them a more favorable answer.

The fact that the legislation does not require the presence of objective witnesses could mean that patients are not willingly self-administering the medication as the law intends, Golden said. It opens up the possibility of elder abuse by heirs or abuse caretakers.

Coombs said the Oregon law has functioned as it was meant to and even has led to unexpected benefits in improving quality of life for terminally ill patients.

“I think the movement is a good thing,” Caplan said. “It has proven to be effective and not abused in Oregon and Washington.”

Many of the people who request the medication never end up taking it, though having it allows them to have a sense of security, Caplan said.

With proper checks and balances, the law should not be problematic, he said.

“Between one-third and one-half of patients never take the medication,” Coombs said. “They just derive a lot of peace of mind from having the option.”

Maynard, who received her prescription in May last year, held onto it until November, once she had decided that the suffering had gotten to be too much, she said.

In Oregon between 1997 and 2014, 1,327 people were prescribed lethal medication, 859 of whom died from ingesting the medication, according to the latest data from the Oregon Public Health Division’s yearly report. In Washington state, 549 people received prescriptions under the state’s Death with Dignity Act from 2009 to 2013; 525 of them died, though not all of these deaths are confirmed to have been the result of ingesting the medication, the state Department of Health’s latest report states.

Both Oregon and Washington found that participants had three major concerns: loss of autonomy, diminishing ability to engage in the activities that make life enjoyable, and loss of dignity. Meanwhile, only about a third of patients in both states were concerned about inadequate pain control.

“It’s not as simple as pain,” Coombs said. “Everyone gets to identify their own definition of suffering.”

Similar bills repeatedly have failed to pass either as ballot initiatives or as legislative measures in other states. More than 140 similar proposals in 27 states have failed since 1994, according to the Patients Rights Council.
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At the End of Life: Death Doulas and Home Funerals

Alternatives to institutions emerge in caring for dying people and their families

by Shannon Firth

When Lee Hoyt was in college her parents died — first her mother and then her father. Hoyt, now a retired teacher and volunteer at Gilchrist Hospice in central Maryland, said the losses were exacerbated by the abrupt separation from her parents.

“They were whisked away by the funeral home. It was done the conventional way, and no one talked to me about it,” she said.

Julie Lanoi, RN, a mental health clinician, hospice nurse and vice president of New Hampshire Funeral Resources Education and Advocacy (FREA) felt similarly about her own experience.

As a full time caregiver for both of her grandparents, Lanoi was upset by how quickly her grandmother’s body was taken from her when she died.

“It feels unnatural to me to have that distancing from the experience so quickly,” said Lanoi. “The person that you have loved your whole life is all of a sudden, they’re just gone out of the room, and you never see them again. Or you never see them again in that natural state.”

At the time, Lanoi was resigned to the process. “And then I realized there was another way to do it.”

Lanoi came across an article online on home funerals and “conscious dying.” The concept of “conscious dying” encourages conversation and decision-making, so that patients and families can make death and the bereavement process more meaningful and more intimate.

Both women are now what are variously called death doulas, death midwives, midwives to the soul, transition guides, psychopomps, and thanadoulas. They believe that there should be alternatives to institutions for people at the end of life, and to conventional afterlife care — that is, funerals — as well.

Interest in home funerals seems to be growing, particularly among providers. According to the National Home Funeral Alliance, 23% of its members are also medical providers — this includes doctors, nurses, and physical therapists. An additional 22.5% are spiritual care and social workers.

Still, said the group’s president, Lee Webster, “We are a death-denying a culture.”

“We’re the only creatures in existence that know we have a finite end,” she continued. “Not discussing it is ludicrous.”

The goal of home funeral guides is to walk patients and their families through the after-death process.

“We all want to feel that we’re not alone.”

Coaches, Fixers, Handholders

The role of death doulas or death and dying guides, as the Alliance calls them, is simple but important.

Patients will call on these individuals to help them write advanced directives, to plan wakes and funerals, and to help prepare their friends and family for what is about to happen. These guides can also help dying patients with the emotional and psychological work of forgiving injuries. “So that you can have a more peaceful ending to your relationships,” Hoyt said.

Many end-of-life guides will sit with families and offer support as patients are dying. Hoyt has also been called to the bedside of patients who have already died. She sat beside one man who had been dead 5 hours, while the family drove to the hospital. “The daughter was very grateful someone was there and that he hadn’t been alone,” she said.

After death, instead of having the patient’s body removed by a professional, Hoyt coaches family members in how to wash the body, properly rinse the mouth, shut the jaw, and dress him or her. It’s legal in all states for families to bathe a loved one, even after death, she said.

If the patient is in a hospital or nursing home, Hoyt can help families to complete the legal forms that would allow the family to bring a loved one home, if they wish to.

(Nine states mandate that families must engage with funeral homes. Webster’s group is actively lobbying to change this.)

While Hoyt is a volunteer, many guides and educators are paid for their work.

Jerrigrace Lyons, founder and director at Final Passages, in Sebastopol, Calif., charges an education fee to families of about $1,500 for the work she does over 3 or 4 days.

“I’m always willing to negotiate if people have a hardship with finances,” she said.

Although there is no legal license for death and dying guides, Lyons offers certification in end-of-life training. She conducts in-services at hospitals and sells guidebooks on end-of-life-care and occasionally speaks to medical students at universities.

Hoyt, who received her certification from Lyons, said, “The impetus for the movement in the beginning was healing, the really healing benefits of continuing to be engaged with the care, [and] providing a continuum of care for your loved one after death.”

The reason is obvious. “It keeps you busy and keeps you engaged in doing something that you know is very productive. It’s your final act of love,” she added.

While Hoyt could not rewrite the tragic experience of losing her parents, she was able to support the family of a close friend through her death and funeral process.

Hoyt remembers a house, filled with music, wind-chimes, and bird sounds. The windows were all open and the breeze blew into every room. Her friend lay in her bed barefoot in a favorite coat, under a giant pine bough. Then the family carried her friend in a seagrass casket strewn with lavender to a van that brought her to a burial site, where family and friends threw flowers into the air over her friends’ body.

“It was the most natural ritual that I’ve ever been a part of,” she said.

Guidance at a Distance

Lanoi’s role is to educate families so they can conduct patient-centered and family-directed funerals. She speaks with caregivers and relatives over the phone and holds workshops to share concrete practical and legal steps involved in the process.

She also connects families with traditional and nontraditional resources related to after-death options.

Lanoi said home funerals are not as unconventional as most people think.

“This is the way this was always handled for centuries and centuries and centuries,” she said.

“I think people have a fear that the body’s going to be decomposing before their eyes and it’s just, that’s not what happens.”

Conscious dying slows down the process and allows families to actively grieve their loss instead of setting themselves apart from it, she said. Many families of hospice patients have been bathing, toileting, dressing, and caring for their loved ones for years. That this should abruptly end because a person has died, and that an individual’s care be passed over to a stranger, seems odd to her.

“In caring for the body of the loved one for the last time, in washing the body for the last time, in having them be present with you after the death for a period of hours, it’s a very different experience than the ‘detaching from’ that we conventionally do, and we can miss out on some important emotional experiences,” she added.

When she speaks about her work with other medical colleagues, Lanoi said, “most of the time it’s been ‘Oh, I didn’t know you could do that.’ Some will even say, ‘That’s what I want.'”

When providers ask about the risk of infection, she advises home funeral guides to tell families to use the same universal precautions they would as when a patient was alive. Providers will also ask about their own liabilities. Once a death certificate is signed, “the medical world’s job is over,” she said.
Complete Article HERE!

At center of SCOTUS gay marriage case, a story of love amid crippling disease

Two doctors fight for their own choice of how to die

By Anna Gorman

Dan Swangard, a 48-year-old physician from San Francisco, was diagnosed in 2013 with a rare form of metastatic cancer.
Dan Swangard, a 48-year-old physician from San Francisco, was diagnosed in 2013 with a rare form of metastatic cancer.

This Artist Will Craft Your Loved One’s Ashes Into Beads



They say your loved ones never leave you, but if you want to carry their memory with you always, Merry Coor will craft their ashes into a stunning memorial bead.

“The bead is the first adornment that people ever wore. I think people are drawn to the bead because of that,” Coor told The Huffington Post.

Coor made her first memorial bead in 2014. A couple had asked her to incorporate the ashes of a friend into the glass beads she’s been making for 15 years.

“It was a pretty huge honor and privilege and intimate thing to do with these people’s ashes,” she said, later describing a tearful embrace with the couple. “I realized that this was something I could do for people. I could make a difference.”

Now, clients send her the ashes of their pets and loved ones through her Etsy store, which is a sideline to her Talisman Beads store in Eureka, California.

As part of her process, she invites clients to send along photos, letters and music associated with their lost loved ones. Although she hears tragic stories at times, Coor says she makes sure she’s in a good mood before getting to work and simply remembers how loved each person or pet was.

“I think you put the energy in there, how you’re feeling. You’re just going to put good intentions in it,” she said.

Coor crafts all her beads herself. First she makes round beads by applying heat from a torch to rods of silvered glass, then she applies the ash in a spiral pattern. A thin coating of clear glass seals the design.

Making one bead takes “15 years and 45 minutes,” Coor joked.

According to her Etsy shop, the beads start at $108.

Since her shop started getting attention online, she says she’s received 100 orders, about as many as she’d had in the past year.

“I’m getting orders from Uzbekistan. From all over the world. It’s overwhelming,” she said, adding that employees are helping her with paperwork and finishing the completed beads.

Her customers seem to value the ability to carry their loved ones close to their hearts.

Karen Hall-Thompson, an Etsy customer, cared for her brother for two years before he passed away from ALS.

“I wanted to have my brother with me through the rest of my life, just as I had the privilege of seeing him through the end of his,” she told HuffPost. “This process is very personal and special, not a cold and inhuman production line.”

Customer Danielle Marsalis had a bead made from the remains of her beloved dog Chloe. She said she appreciates that the bead, which she says is “very flattering,” doesn’t look like it’s made of ashes.

“Every time I open jewelry box it brings both a smile to my face and a tear to my eye,” she said.

Ora North, who also lost a dog, had beads made for her and her husband. A jewelry designer friend then put them on necklaces (as seen below).

“We didn’t get enough time with him, so the beads have allowed us to keep him close a little bit longer,” she said.

Photo courtesy Ora North

“I can’t begin to imagine what it’s like to lose a brother or a sister or a spouse or a child, but I know that what I’m doing really helps people,” Coor told Humboldt Made. “I get beautiful letters back from people that are overwhelmed with the beads that I make for them.”

So, what’s her ultimate wish?

“I hope that the beads give you comfort, and help with your grief,” Coor wrote on her Etsy page.
Complete Article HERE!

Videos On End-Of-Life Choices Ease Tough Conversation

By Ina Jaffe

Hawaii ranks 49th in the nation for use of home health care services during the last six months of someone's life. Videos from ACP Decisions show patients what their options are at the end of life.
Hawaii ranks 49th in the nation for use of home health care services during the last six months of someone’s life. Videos from ACP Decisions show patients what their options are at the end of life.

Lena Katakura’s father is 81. He was recently diagnosed with esophageal cancer and doctors don’t expect him to survive the illness. Katakura says a nurse at their Honolulu hospital gave them a form to fill out to indicate what kind of treatment he’d want at the end of life.

“And we’re looking through that and going, ‘Oh my, now how’re we going to do this?’ ” says Katakura. Then the nurse offered to show them a short video and Katakura and her father said “Great!”

While, the majority of Americans say they’d rather die at home, in many cases, that’s not what happens. Among people 65 years of age or more, 63 percent die in hospitals or nursing homes, federal statistics suggest, frequently receiving treatment that’s painful, invasive and ultimately ineffective. And Hawaii is one of the states where people are most likely to die in the hospital.

The video that Katakura and her father watched pulled no punches. It begins: “You’re being shown this video because you have an illness that cannot be cured.” Then, in an undramatic fashion, it shows what’s involved in CPR, explains what it’s like to be on a ventilator, and shows patients in an intensive care unit hooked up to multiple tubes. “You can see what’s really going to be done to you,” says Katakura.

And you can decide not to have it done. The video explains that you can choose life-prolonging care, limited medical care or comfort care.

The simple, short videos are being shown in medical offices, clinics and hospitals all over Hawaii now. And they’re being shown in many of the languages that Hawaiians speak: Tagalog, Samoan and Japanese, among others. Lena Katakura and her father watched the video both in English and in Japanese.

“Some patients have said, ‘Wow, nobody’s ever asked me what’s important to me before,’ ” says Dr. Rae Seitz. She’s a medical director with the non-profit Hawaii Medical Service Association (HMSA) — the state’s largest health insurer. She says there are a number of obstacles that keep patients from getting the treatment they want.

Some health care providers may talk about it, she says, some may not; and each doctor, clinic, hospital and nursing home may have different standards. But also “it takes a lot of time, and currently nobody has a good payment system for that,” says Seitz.

Out of 50 states, Hawaii ranks 49th in the use of home health care services toward the end of life. Seitz wanted to change that and she’d heard about these videos produced by Dr. Angelo Volandes of Harvard Medical School. She thought maybe they could help. So she brought Volandes to Hawaii to give a little show-and-tell for some health care providers.

“I frankly was astounded,” Seitz says, “at how excited people became when they saw these videos.”

Volandes thinks they were excited and — maybe — a little bit relieved.

“Physicians and medical students aren’t often trained to have these conversations,” says Volandes. “I, too, had difficulty having this conversation and sometimes words aren’t enough.”

Volandes is the author of a book called The Conversation. It tells the stories of some of the patients he encountered early in his career and their end of life experiences. He describes aggressive interventions performed on patients with advanced cases of cancer or dementia. In the book, they suffer one complication after another. There is never a happy ending.

But the videos are not designed to persuade patients to opt for less aggressive care, Volandes says. “I tell people the right choice is the one that you make — as long as you are fully informed of what the risks and benefits are.”

Still, studies show that the vast majority of people who see these videos usually choose comfort care — the least aggressive treatment. That’s compared to patients who just have a chat with a doctor.

Every health care provider in Hawaii currently has access to the videos, courtesy of the Hawaii Medical Service Association. The impact on patients will be studied for three years. But one thing that won’t be examined is how patients’ choices affect cost, Seitz says.

“When a person dies in hospice care at home,” she says, “it’s not as costly as dying in the ICU. But it’s also more likely to be peaceful and dignified. So people can accuse insurance companies [of pushing down costs] all they want to, but what I would look at is: Are people getting the kind of care that they want?”

Katakura’s father is. He’s at home with her, and receiving hospice services. After seeing the videos, she says, he chose comfort care only.

If she were him, she’d want that too, Katakura says. “So I was satisfied with his decision.”

Now, she says, she needs to make a decision for the kind of care she wants for herself at the end of life — while it’s still, she hopes, a long way off.

Watch A Sample Video

This excerpt from an ACP Decisions video was posted by NPR member station KPCC. You can view the full catalog on ACP Decision’s website, but they note that the videos are not meant for individual use; they’re designed to be part of a conversation between providers and patients.

Complete Article HERE!

Teenagers Face Early Death, on Their Terms


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!