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 “But Caspar is non-precedential and factually distinguishable.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.
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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.
Complete Article HERE!

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

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.
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!