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Snyder opposes recognizing terminally ill gay man’s marriage

by Chris Johnson

Rick Snyder, Michigan, gay news, Washington Blade
Michigan Gov. Rick Snyder opposes the recognition of a terminally ill gay man’s marriage.

 

Michigan Gov. Rick Snyder announced in a legal brief filed late last week he opposes state recognition of the marriage of gay man in the Wolverine State who’s terminally ill.

In a five-page brief dated April 16 and submitted to the U.S. District Court of the Western District of Michigan, Snyder argues Michigan shouldn’t be required to recognize the marriage of Bruce Morgan, an East Grand Rapids, Mich., resident who’s suffering from brain cancer and married his partner, Brian Merucci in New York in 2013.

A federal court had struck down Michigan’s ban on same-sex marriage in March 2014, but the U.S. Sixth Circuit Court of Appeals reversed the decision, upholding the state’s prohibition on gay nuptials. That case is now pending before the U.S. Supreme Court.

Snyder had acceded to another court ruling requiring Michigan to recognize the marriages of around 300 same-sex couples who wed during a “window” period after the initial court ruling, but before the Sixth Circuit placed a stay on the weddings. But the governor says the decision in that lawsuit, Caspar v. Snyder, isn’t enough for the court to grant state recognition of Morgan’s marriage.

“The only circumstance cited by Plaintiffs not previously considered by this Court is the decision in Caspar,” Snyder said. “But Caspar is non-precedential and factually distinguishable. Consequently, the legal and factual landscapes relevant to staying this case remain the same as they did when this Court issued the stay, and Plaintiffs’ motion should be denied.”

The lawsuit, Morgan v. Snyder, was filed private attorneys on behalf in June 2014, but the case was stayed in August as marriage litigation was pending before the Sixth Circuit. Earlier this month, the plaintiff couple sought a relief from the stay in the aftermath of the decision in the Caspar case.
Complete Article HERE!

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Alzheimer’s trial in Iowa stirs talk of senior sexuality

Experts from the Widener University-based Sexuality and Aging Consortium say a groundbreaking Iowa court case illustrates why consumers and long-term care facilities should do more thinking about sex — before they get into trouble.

 

by Stacy Burling

Whether their parents still want sex probably isn’t at the top of the minds of most people choosing a nursing home for their loved ones.Elder-sex

But experts from the Widener University-based Sexuality and Aging Consortium say a groundbreaking Iowa court case illustrates why consumers and long-term-care facilities should do more thinking about sex — before they get into trouble.

In the Iowa case, Henry Rayhons, 78, a former member of the Iowa House of Representatives, is charged with sexual abuse for having sex with his wife of seven years in her nursing home. She had been diagnosed with Alzheimer’s disease. A doctor at the Garner, Iowa, facility where Donna Rayhons lived, and her two daughters from a previous marriage, concluded she was too impaired to consent to sex.

sexinoldageThe case raises complex questions about what constitutes consent for a person with dementia and how nursing homes should prepare for the inevitable: People of all ages want and need sexual contact.

“Our need for touch is universal, from birth to death,” said Robin Goldberg-Glen, a social-work professor at Widener who is co-president of the consortium.

The group, which includes about 40 experts on sexuality and aging from around the country, educates professionals and students in an attempt to reduce discrimination and advocate “for the rights of people in long-term care to have their sexuality respected and their choices respected,” said co-president Melanie Davis, a sexuality educator in Somerville, N.J.

The consortium is not taking a position on the Rayhons case. It and the family dynamic behind it are complicated. Witnesses say Rayhons was told his wife was not capable of consenting to sex. It’s unclear what kind of contact occurred between them while a curtain was pulled between her side of the room and her roommate’s last May. Semen that matched his genetic profile was found on her quilt and sheet. The roommate complained about noises but did not describe sounds of a struggle.seniors_men

Henry Rayhons testified Friday that he and his wife held hands, prayed and kissed at her nursing home the day in question, but that they had no sexual contact.

He said any sounds his wife’s roommate heard were him situating his wife in her bed. His wife died in August.

“She was my queen,” he testified. “I miss her every day. I will never take her ring off.”

Rayhons is charged with third-degree sexual abuse, and if convicted could face up to 10 years in prison.

The crux of the case is the question of Donna Rayhons’ ability to consent. Iowa law defines an act as sexual abuse in the third degree if the two parties are not living together as husband and wife, and if one person “is suffering from a mental defect or incapacity, which precludes giving consent.”

Dr. Robert Bender, a geriatrician with Broadlawns Medical Center in Des Moines, testified for the defense Friday, saying a cognitive test in which patients are asked basic questions doesn’t measure parts of the brain that enable people to feel sexual desire. Bender never treated Donna Rayhons, but said he has treated several other Alzheimer’s patients.

Donna Rayhons’ doctors previously testified that her score of zero on that test indicated severe impairment.

Prosecutors played a recorded interview with an investigator that showed Rayhons initially said he and his wife never had sex at the nursing home but later said they had a few times, and possibly briefly on the day in question.

elderly-health_2064340bRayhons, who served nine terms in the Iowa House, testified that he didn’t have sex with his wife that day, adding: “She was not in any mood to have anything at all.”

The defense rested its case Friday. Closing arguments are scheduled for Monday

Davis and Goldberg-Glen think a clear policy and better communication might have headed off the legal confrontation. “There are much more humane ways and caring ways to deal with a case rather than taking legal action,” Goldberg-Glen said.

Figuring out what consent means for someone with dementia is tricky. Responding positively to touch is different from deciding whether you want to buy a new car or would rather have chicken than fish for lunch.

Gayle Doll, director of Kansas State University’s Center on Aging and an adviser to the consortium, said nursing-home leaders often try to guess what residents would have wanted before getting sick.

The current thinking, she said, is that “we become new persons” when we get dementia, and decisions should be based on how we are now. She advocates for assigning the same staff members consistently to residents so that the staff understands unspoken cues.

“People with dementia, we make every decision for them,” she said. “We’ve got to start hearing their voices.”
Complete Article HERE!

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Half of US states consider right-to-die legislation

By Malak Monir

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.
Complete Article HERE!

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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!

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

By Timothy M. Phelps

There are more than 30 plaintiffs in the gay marriage lawsuits that will be argued before the Supreme Court this month. But the case that will go down in history is named for just one, Jim Obergefell, a 48-year-old real estate salesman from Cincinnati who is battling Ohio over a word the state wants to write on his late husband’s death certificate: “single.”

The naming of the multiple consolidated gay marriage suits as Obergefell vs. Hodges was a clerical fluke, but the story behind it is one of the most unusual and poignant of the cases to be decided by the justices in June. It is a story of love amid a crippling disease, a triumphant wedding ceremony aboard a chartered medical jet on the tarmac in Baltimore, and then a legal battle over whether Obergefell’s three-month marriage to a dying John Arthur would be recognized on a piece of paper after he was gone.

“Here’s the last official record of John as a person, and it would be wrong,” said Obergefell, interviewed Sunday on the steps of the Supreme Court building, where the unassuming former corporate consultant never imagined himself.

The justices are widely expected to rule in favor of legalized gay marriage nationwide. But they also asked to hear arguments April 28 on a possible smaller step, letting states resolve the issue but forcing those where same-sex marriage is illegal to recognize unions performed in other states. That dispute is at the heart of Obergefell’s suit.

Obergefell and Arthur had been together for 20 years, often working side by side as consultants in Cincinnati for corporations like Oracle. They wanted to marry, but Ohio banned same-sex marriage. They didn’t want to marry in another state because it would have been a “symbolic” union invalid at home.

Two years ago, when the Supreme Court struck down the federal Defense of Marriage Act, they began to reconsider. The fact that Arthur had been diagnosed with amyotrophic lateral sclerosis, or ALS, a fatal, crippling neurological disorder often called Lou Gehrig’s disease after the baseball player, added “a much greater sense of urgency,” Obergefell said.

“With John’s death approaching, it just gave us more of an impetus and more of a desire to have our relationship validated and recognized,” Obergefell recalled. “We suddenly saw the opportunity to say ‘I do’ and have it matter from a legal and governmental perspective. But if John had not been dying from ALS, we still likely would have gotten married because after 20 and a half years together we wanted to be treated the same as other couples.”

Arthur’s worsening condition created additional obstacles to their plans.

“When we decided, ‘Let’s try and make this happen,’ at that point [John] was bedridden and in hospice care at home,” Obergefell said. “All he could do was move his right hand and his head a little, and speak.”

The couple decided to marry in Maryland, which offered simpler licensing requirements. But Obergefell did not think Arthur could make it by car. The only feasible option seemed to be chartering a medical jet at a cost of $13,000.

When he posted their financial dilemma on Facebook, friends and family quickly raised the money.

They never left the plane in Baltimore. On July 11, 2013, Arthur’s aunt, Paulette Roberts, performed the marriage, having ordained herself a minister for the occasion online. Each of them said, “I thee wed,” Arthur with some difficulty. A newspaper photographer came aboard to capture the moment.

The couple quickly discovered that the ceremony made a difference in their relationship. “We just felt different, having that government recognition of our relationship,” Obergefell said. “Having the government say you exist, you count.”

When they got back to Cincinnati there were 30 friends to greet them on the tarmac.

But mindful that Arthur’s disease was likely to claim his life soon, the couple set out on one final mission: to ensure that his death certificate would reflect their legal marriage.

Their lawyer, Alphonse Gerhardstein, warned them that it would be an uphill legal battle, but he filed an emergency suit in federal court.

Eleven days after their wedding, a federal judge ordered Ohio to issue the word “married” on the death certificate when Arthur died. Like many other gay marriage rulings around the country, it was based on the 2013 Supreme Court decision striking down part of the federal Defense of Marriage Act.

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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.

Dan Swangard knows what death looks like.

As a physician, he has seen patients die in hospitals, hooked to morphine drips and overcome with anxiety. He has watched dying drag on for weeks or months as terrified relatives stand by helplessly.

Recently, however, his thoughts about how seriously ill people die have become personal. Swangard was diagnosed in 2013 with a rare form of metastatic cancer.

To remove the cancer, surgeons took out parts of his pancreas and liver, as well as his entire spleen and gallbladder. The operation was successful but Swangard, 48, knows there’s a strong chance the disease will return. And if he gets to a point where there’s nothing more medicine can do, he wants to be able to control when and how his life ends.

“It’s very real for me,” said Swangard, who lives in Bolinas, Calif. “This could be my own issue a year from now.”

That’s one of the reasons Swangard joined a California lawsuit last month seeking to let doctors prescribe lethal medications to certain patients who want to hasten death. If he were given only months to live, Swangard said, he can’t say for certain whether he would take them.

“But I want to be able to make that choice,” he said.

The right-to-die movement has gained renewed momentum in California and around the nation following the highly publicized death of an East Bay woman with brain cancer. Brittany Maynard, 29, moved to Oregon to take advantage of its “Death with Dignity” law and died in November after taking a fatal dose of barbiturates prescribed by her doctor.

The California lawsuit asks the court to protect physicians from liability if they prescribe lethal medications to patients who are both terminally ill and mentally competent to decide their fate.

The lawsuit argues that while it is against the law in California for anyone to assist in another’s suicide, these cases are not suicides. Rather, the suit argues, they are choices by a dying person on how his or her life should end and decisions about one’s own body protected under the state constitution.

Separately, two California state senators have proposed a bill that would allow doctors to prescribe lethal medication to certain terminally ill adults.

Three states — Oregon, Washington and Vermont — already have laws allowing physician-assisted deaths. Courts in New Mexico and Montana also have ruled that aid in dying is legal, and a suit was also recently filed in New York.

Legislation is pending in several other states. Kathryn Tucker, an attorney on several of the court cases, is also spearheading the California lawsuit. This time, she and her legal team decided to include among the plaintiffs two doctors with life-threatening illnesses, Swangard and a retired San Francisco obstetrician.

Physicians “have a very deep and broad understanding about what the journey to death can be like,” said Tucker, executive director of the Disability Rights Legal Center. “The curtain is pulled back. For lay people, death is much more mysterious.”

Historically, doctors have been some of the most vocal critics of assisted suicide, also called aid-in-dying. The American Medical Association still says that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer.” Similarly, though it hasn’t taken a position on currently proposed legislation, the California Medical Association has said that helping patients die conflicts with doctors’ commitment to do no harm. “It is the physicians’ job to take care of the patient and that is amplified when that patient is most sick,” said spokeswoman Molly Weedn.

But a recent survey of 21,000 doctors in the U.S. and Europe shows views may be shifting. According to Medscape, the organization that did the survey, 54 percent of American doctors support assisted suicide, up from 46 percent four years earlier.

Swangard is among those who believe that taking care of patients means letting them choose how their lives should end. That’s not the same as killing patients or facilitating suicide, he said.

Swangard completed his medical residency in San Francisco in the middle of the AIDS crisis; young men were dying all around him. Throughout his career as an internal medicine doctor, a hospice volunteer and now an anesthesiologist, he has become frustrated with how the medical system handles death. Doctors spend so much time trying to extend life that few focus on what patients want in their last days, he said.

“I don’t think we know how to die,” he said. “We fight tooth and nail to keep that from happening.”

Swangard’s own illness was discovered in early 2013 during a long overdue check-up. He hadn’t been worried about his health — he was obsessed with fitness, swimming regularly and seeing a trainer twice a week. But when the doctor pressed on Swangard’s stomach, he felt a mango-sized mass.

He had a visceral feeling, he said, “something bad was happening.”

Within a week, a surgeon found a neuroendocrine tumor in the pancreas and metastasis in the liver. It was the same cancer that took Steve Jobs’ life — one that doesn’t generally respond to chemotherapy or radiation. “My fears became real,” he said.

The doctors told him they believed they got all the cancerous cells. But Swangard was tormented by questions: Am I going to be alive in a year? Is my cancer going to come back?

“I wasn’t sleeping, I wasn’t exercising, I was marinating in my own sadness and fear of what this all meant,” he said. “I thought, ‘This is going to kill me.'”

Since his diagnosis, Swangard said he has had a greater understanding of his patients’ struggles. Occasionally, he holds their hands and tells them he has been where they are.

Earlier this year, a physician friend asked him if he’d be willing to join the California case. Swangard didn’t hesitate. He didn’t go into medicine to help dying people linger and wants to help change that approach — for his patients and for himself.

When he dies, Swangard said, he wants to be surrounded by people he loves. He doesn’t want to be in a drug-induced haze, nor consumed by worry about what’s next. He wants to be able to say goodbye.

“It is a little bit of a blessing to know how I might die,” he said. “I don’t think a lot of patients have insight into what to expect.”

These days, he wears a Buddhist prayer bracelet, a reminder to focus on the present. He cut his work hours, swims as often as he can and meditates regularly. At home, he stares out at the ocean, often watching dolphins pass by. He makes every effort to stay calm and healthy.

He is in remission but he knows that what happens with the cancer is largely outside his control. An MRI last year showed a small lesion in his liver, which doctors are watching closely.

“It’s this big unknown,” he said.

Dr. Robert Liner, a fellow plaintiff who only recently met Swangard, lives with the same uncertainty.

On his 69th birthday in May 2013, the retired obstetrician had a bad cough. He felt tired and short of breath. His wife took him to the hospital, where doctors discovered malignant masses on his kidneys — advanced-stage lymphoma.

After radiation and chemotherapy, the tumors shrank. He also is in remission. But if the cancer comes back, he said, “the prospects are not going to be good.”

He often thinks of a former patient, a 25-year-old woman with metastatic ovarian cancer. She wanted to die while she still was able to communicate. Liner wasn’t able to help ease her death because the law wouldn’t let him. “I felt like I’d failed her,” he said.

Years before his diagnosis, Liner, now 70, became involved with Compassion & Choices, an organization that promotes aid-in-dying. He has a shelf of books in his San Francisco home devoted to the subject: Being Mortal, Dying Right, Knocking on Heaven’s Door.

He keeps a stack of notecards with quotes about the end of life, which he often recites in speeches to church groups or senior centers. One reads, “The best preparation for death is a life well-lived.”

He believes having medication to hasten death helps terminally ill people live fully in their last weeks or months without being immobilized by fear. “If you are riddled with anxiety, you are not free to concentrate on what’s most meaningful to you,” he said.

Like Swangard, Liner doesn’t know if he would take the medication. He recently married the woman he calls his “beloved” and said he has lots of plans for his retirement years, including writing a screenplay and improving his piano playing.

“My wife says I’d be hanging on to life by my fingernails,” he said.

But that decision should be his to make, with his family and his doctor, he said. “I want the comfort of knowing it’s up to me when enough is enough,” he said.

Complete Article HERE!

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

By

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.
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