A divisive national debate over whether dying patients should have the power to end their own lives will sweep into Maine this week when the Republican-controlled state Senate begins to consider so-called “death-with-dignity” legislation.
Sen. Roger Katz’s bill, which the Republican from Augusta says the Senate could take up as early as Monday, is modeled after legislation passed in Vermont two years ago that allows physicians to provide lethal doses of medication to terminally ill patients who want to hasten their death. Katz and other supporters say those who are suffering should be free to end their lives on their terms.
“Why not have the right to say, ‘I want to go, I’ve had it’?” said 85-year-old June Wagner, whose daughter died in 2012 at the age of 54 after suffering from ovarian cancer. Her daughter lived in Washington state, which has such a law, and obtained a prescription to end her own life, but Wagner said she doesn’t know if she ultimately used it.
Maine would become the sixth state in the country with such a law if Katz’s bill passes this year, but it faces an uphill battle. Lawmakers here have repeatedly rejected similar measures and voters defeated a ballot referendum on the issue in 2000.
It has been met with fierce opposition from some religious and medical groups, including the Maine Medical Association and the American Nurses Association of Maine, who say lawmakers should focus instead on ensuring that all residents have access to proper health care that can make them comfortable in the final months of their lives. Others say they fear patients will feel the need to end their own life because they believe they’re a burden on their families.
Suzanne Lafreniere, director of the office of public policy for the Roman Catholic Diocese of Portland told lawmakers earlier this year that a person’s life must be protected “at every stage and in every condition.”
“A law permitting assisted suicide would demean the lives of vulnerable patients and expose them to exploitation by those who feel they are better off dead,” she said in her written testimony.
Brittany Maynard thrust the issue back into the national spotlight last year she ended her own life just before her 30th birthday in Oregon, the first state to legalize the practice. Maynard, who was dying of brain cancer, advocated for aid-in-dying laws in videos shared widely online.
Kandyce Powell, who opposes the bill and is executive director of the Maine Hospice Council, said she believes the proposal wouldn’t resurface so frequently if more people in Maine had proper access to end-of-life care.
Vast rural parts of the state lack hospice or palliative care that can ease a person’s suffering in the final stages of their life, Dr. James VanKirk, medical director of palliative care services at Eastern Maine Medical Center.
“I am not against people having choice. That’s what we’re all about in this country,” VanKirk said. “But I think if we’re going to give people this kind of choice … we need to make sure that they really have a choice. We need to make sure that they don’t feel like they are in a situation where there is only one option.”
Katz agreed that expanding access to health care is crucial, but palliative care may not make things bearable for everyone, he said. He stressed that his proposal includes many safeguards, including requirements that a second doctor has confirmed that the patient has a limited time to live.
He’s hopeful that the national discussion and the increased awareness of the issue over the last year will help propel his bill into law — if not this year, sometime soon.
“There are some people who have religious objections or other moral objections and I respect that,” Katz said. “But I think that most people have an open mind and are waiting to hear the debate.” Complete Article HERE!
Allows doctors to provide lethal drugs to patients with less than six months to live
Chances improved after California Medical Association dropped opposition
Debbie Ziegler mother of Brittany Maynard
BY ALEXEI KOSEFF
In an emotional vote on Thursday, the California Senate advanced a controversial proposal allowing terminally ill people to seek life-ending medication.
Modeled on a law first enacted in Oregon in 1997, Senate Bill 128 would permit doctors to provide lethal drugs to patients with less than six months to live. The measure passed 23-14, over passionate objections from Republicans who argued it devalues life.
The deeply personal debate lasted for more than an hour-and-a-half, as senators shared stories of lost loved ones and their own struggles with suicidal thoughts. Democrats urged their colleagues to support a “compassionate” end-of-life option that lets people die in peace.
“I was 17 when my vibrant young mother ended a three-year struggle with metastatic cancer, and it was frankly brutal,” said Sen. Lois Wolk, D-Davis, who authored the measure.
“Her suffering was prolonged and unbearable – for her, certainly, and also for her family,” she said. “It does not have to be this way.”
While Washington and Vermont have since followed Oregon in legalizing assisted death, numerous proposals from California lawmakers have fallen short over the years in the face of vocal concerns from doctors, the Catholic Church and disability rights groups. The last major effort, by then-Assembly members Patti Berg, Lloyd Levine and Fabian Núñez in 2007, was never brought to the floor for a vote.
Proponents were buoyed this time, however, by the story of Brittany Maynard, a Bay Area woman with brain cancer who gained national attention last fall when she moved to Portland to take advantage of Oregon’s law. Her widowed husband, Dan Diaz, and mother, Deborah Ziegler, sat in the back of the Senate chamber on Thursday with a portrait of Maynard.
“The Senate vote, I feel, is an affirmation of what Brittany started,” Diaz said at a news conference following the vote. SB 128 “will not lead to more people dying. It will lead to fewer people suffering.”
Choking back tears, Ziegler said she felt Maynard’s “presence swirling around, her energy, her love.”
“I am so proud of her, and I am so proud of California senators today,” Ziegler added.
Sen. Cathleen Galgiani, D-Stockton, framed the vote as an ethical responsibility for the Senate. As medical science allows doctors to prolong life, she said, patients and their families are faced with more difficult choices.
“This bill gives guidance to someone who’s dying … about whether everything has been considered,” she said. “It will give loved ones the ability to move to their next life without guilt, without shame, and it will give loved ones the chance to say goodbye.”
Nine Republican lawmakers rose to speak against the bill. Some opposed it on religious grounds, saying the state should not make life or death decisions. Sen. Ted Gaines, R-Roseville, suggested it violates the Declaration of Independence.
“It is a total inversion of (the government’s) purpose, to transform it into an instrument of death,” he said.
Sens. Sharon Runner, R-Lancaster, and Joel Anderson, R-Alpine, confessed to grappling with a desire to die during medical crises, and asked their colleagues not to give sick people a reason to give up.
“You bet I thought about suicide. You bet I did,” Anderson said, his voice wavering. “I don’t want to do anything that the state sponsors to strip hope and add guilt to our citizens.”
Sen. Lois Wolk, D-Davis and Sen. Bill Monning, D-Carmel, California bill sponsors
Urging his colleagues not to “sanitize” the discussion, Sen. Bob Huff, R-Diamond Bar, reminded them that many doctors believe assisting in a patient’s intentional death violates their role as healers. “Reality is this is aid in killing,” he said.
A major obstacle was cleared last month when the California Medical Association dropped its long-standing opposition because of provisions that would allow physicians with moral objections to opt out of the law.
Wolk thanked the CMA for providing guidance on bill language and pointed to numerous safeguards for patients, who must be assessed by two independent physicians, provide two written and one verbal request for the lethal drugs, and wait 15 days before a doctor writes a prescription.
“It must be an affirmative, conscious act,” Wolk said.
Disability rights advocates have led the campaign against SB 128, arguing that legalizing assisted suicide would put the elderly and other vulnerable Californians in harm’s way.
“This bill … tells people with disabilities who face a terminal diagnosis, that may well prove inaccurate, that there is no dignity in our lives,” Marilyn Golden of the Disability Rights Education & Defense Fund said in a statement. “Assisted suicide is dangerous, and we are going to bring that message loud and clear to every member of the state Assembly and the governor.”
SB 128 heads next to the Assembly, where supporters are hopeful that CMA’s neutrality will ease passage. Gov. Jerry Brown, who once trained to be a Jesuit priest, has yet to weigh in publicly on the proposal, but his office confirmed on Thursday that he spoke with Maynard by phone before she died. Complete Article HERE!
Stephanie and Brian Packer make lunch with their children, Brian, 11, Savannah, 5, Scarlett, 10, and Jacob, 8.
Stephanie Packer was 29 when she found out she had a terminal lung disease.
That’s the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Last fall, Maynard, of Northern California, opted to end her life with the help of a doctor in Oregon, where physician-assisted suicide is legal.
Maynard’s story continues to garner support for right-to-die legislation moving through legislatures in California and several other states. Now, Packer, another young California woman, is stepping up to share her story, but she wants people to draw a different conclusion.
On a recent spring afternoon, Packer, 32, is in her kitchen, preparing lunch with her four children.
“Do you want to help?” she asks the eager crowd of siblings gathered tightly around her at the stovetop.
“Yeah!” yells 5-year-old Savannah.
“I do!” says Jacob, who is 8.
Calmly managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying, but Packer cherishes these moments.
In 2012, after suffering a series of debilitating lung infections, she went to a doctor who diagnosed her with scleroderma. The autoimmune disease causes hardening of the skin and (in about one-third of cases) other organs. The doctor told Packer that it had settled in her lungs.
“And I said, ‘OK, what does this mean for me?’ ” she recalls. “And he said, ‘Well, with this condition you have about three years left to live.’ ”
Packer is on oxygen full time and she takes a slew of medications.
She says she has been diagnosed with a series of conditions linked to or associated with scleroderma, including lupus, gastroparesis, Raynaud’s phenomenon, interstitial cystitis and trigeminal neuralgia.
Packer’s various maladies have her in constant, sometimes excruciating pain, she says. She also can’t digest food properly and feels extremely fatigued almost all the time.
Some days, Packer says, are good. Others are marked by low energy and pain that only sleep can relieve.
“For my kids, I need to be able to control the pain because that’s what concerns them the most,” she says.
But Packer says physician-assisted suicide isn’t something she is considering.
“Wanting the pain to stop, wanting the humiliating side effects to go away — that’s absolutely natural,” Packer says. “I absolutely have been there and I still get there some days. But I don’t get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn’t have to be.”
She and husband Brian, 36, are devout Catholics. They agree with their church that doctors should never hasten death.
Stephanie Packer, 32, is terminally ill with the autoimmune disease scleroderma.
“We’re a faith-based family,” he says. “God put us here on earth and only God can take us away. And he has a master plan for us, and if suffering is part of that plan, which it seems to be, then so be it.”
They also believe if California legislation called SB 128 passes, it would create the potential for abuse. Pressure to end one’s life, they fear, could become a dangerous norm, especially in a world defined by high-cost medical care.
Instead of fatal medication, Stephanie says she hopes other terminally ill people consider existing palliative medicine and hospice care.
“Death can be beautiful and peaceful,” she says. “It’s a natural process that should be allowed to happen on its own.” Even, she says, when it poses uncomfortable challenges.
Brian has traded his full-time job at a lumber company for weekend handyman work so he can care for Stephanie and the children. The family downsized, moving into a two-bedroom apartment they share with their dog and two pet geckos.
Brian says life is good.
“I have four beautiful children. I get to spend so much more time with them than most head of households,” he says. “I get to spend more time with my wife than most husbands do.”
And it’s that kind of support — from family, friends and people in her community — that Stephanie says keeps her living in gratitude, even as she struggles with her terminal illness and the realization that she will not be there to see her children grow up.
“I know eventually that my lungs are going to give out, which will make my heart give out,” she says. “And I know that’s going to happen sooner than I would like — sooner than my family would like. But I’m not making that my focus. My focus is today.”
Stephanie says she is hoping for a double lung transplant, which could give her a few more years. In the meantime, this month marks three years since her doctor gave her three years to live. So every day, she says, is a blessing. Complete Article HERE!
Margaret Leahy sits quietly beside a hospital bed, holding the hand of a dying woman. She knows her name, but that’s about all and — it is enough. Margaret talks quietly to the woman, breathes a prayer, strokes her hair, dampens her lips.
Margaret Leahy, 75, is part of a group of volunteers committed to the belief that no one should die alone — that’s the name of their group. Working at Saint Alphonsus hospital, they sit with patients at the end of their life who have no one else who can be with them. “There are people who don’t (have anyone else) and they deserve to have somebody there,” says Margaret. “It’s just being a presence, really, just being there. … Sometimes it’s just holding their hand or stroking their head or taking care of their mouth that gets all dry.” Here Margaret, a member of Sacred Heart Catholic Church, sits in their memorial garden.
For whatever reason, the woman has no family or friends to be with her in the last hours of her life. But she has Margaret, along with a small group of hospital volunteers, who will take turns being by her side until she dies.
She says: “Compassionate companionship …
“These people are at the end of their lives, but they have a whole story and history behind them. And I may not know (the story), but they have a life that deserves respect.”
This person might be a transient, just passing through, or had an accident far from home. Or be someone alienated from family, or an elderly person with an elderly spouse who can’t be at the hospital. All of them perfect strangers.
“They’re not. They’re family. …
“You’re able to be with somebody in one of the most critical moments of their life. There’s birth and there’s death. And there’s usually a lot of people around the birth and not too many people around the death. …
“It’s one of the most rewarding things I’ve ever done.”
Margaret is part of an all-volunteer group called No One Dies Alone, a national organization with local chapters where people are moved to create them. The nucleus of this group is a partnership between Saint Alphonsus Hospital and members of Sacred Heart parish, begun 10 years ago by Mary Fran Brown.
When death is imminent for someone without family, usually 48 to 72 hours more or less, nurses will contact the chaplain who sets into motion a beeper and subsequent phone calls to the small pool of 20 or 25 volunteers who will come in four-hour shifts around the clock. Margaret is one of the relief coordinators.
“You’re not always the one there when they die (it is someone else who is) but all the volunteers feel the same way: It is a wonderful gift that we’ve been given to be able to do this.
“ … It’s a gift to me, but it’s also a gift I can give to them.”
Everyone volunteers for different reasons, and Margaret’s are many. She knew from a young age that she wanted to be a nurse, and over the years, there have been many people who have died while she was working.
“They have not been ignored, but you’re in with them, you walk out — and they die. Or you go care for someone else, come back half an hour later — and they die. So I’ve seen people that have had nobody with them.”
Among the deaths in her own family, Margaret has been able to care for one sister. But she wasn’t able to be with her parents, another sister, her brother or sister-in-law when they died. She had been with them and then had to come home; other people were with them at their deaths.
“So I think it’s kind of a way of giving back.”
On just her third day on the hospital floor as a young nursing student, Margaret went into the room of a heart patient.
“He starts, as I now know, having chest pains. The dear nuns were very sweet; they felt I was young, so they had me leave the room. So I wasn’t in the room. … I’ve often felt that’s another reason I’ve been drawn to this work: because I couldn’t be there for him.”
When it’s their turn, volunteers check in with the volunteer office and the nursing staff and then go to the room. Most of their people are unconscious or semi-conscious.
“They say hearing is the last to go and they hear voices, they feel touch. So we hold hands, we talk. …
“I read a great article years ago that struck me. It said, ‘Even when you’re dying, you’re living.’ It’s a much more positive aspect to look at that. (Death has) become something you don’t fear.”
Margaret might read out loud or read to herself; she might say rosaries out loud or silent prayers, depending on the person’s religious preference. When she was with her sister, she knitted.
“It’s being the presence there, letting them know they’re not alone. It’s a very sacred time to be there. It’s sacred because it’s so real.”
One time, Margaret was sitting by the bed, holding hands with a woman. A nurse, a friend of Margaret’s, came by to check on both of them and they were talking softly across the bed.
“We both … looked down and she had very quietly passed away. And I thought, you know, that’s not a bad way to go, with people right beside you, talking, so you know you’re not alone. … A feeling of connectedness.
“(A peaceful death) — that’s what we wish for everybody. It doesn’t always happen, but when it can … There’s so much un-peaceful death in the world, it’s nice to be able to see that somebody does have one.”
The services that No One Dies Alone provides are for people of any or no denomination, but Margaret’s volunteering comes from a place of deep faith.
“Visit the imprisoned, visit the sick. Care for the sick, feed the hungry, shelter the homeless; take care of those that are in need — and these are people who are in need.
“That’s where my faith is coming from, caring for another in whatever way you can. It’s so integral, it’s so hard to put into words. …
“There are a lot of volunteers who are doing it to simply be of service to another human being — another type of faith.”
Margaret is also on the Board of Directors for Friendship Clinic, a free medical clinic on Latah Street, and is one of the clinic managers. She also does home visits for St. Vincent de Paul and does faith-based community nursing at Sacred Heart. Her husband, Rick Leahy, is a volunteer at Corpus Christi House.
“It’s a need to give. …
“If you had asked me at 25 (years old) what I thought I’d be doing at 75, I think I would have said I would be happy to be alive. But … I often just seem to step into things and, it seems, I seem to fill a need and it seems to fill a need in me.
“Maybe it helps me become a little bit more complete, a little more whole, a little less egocentric. …
“I always wanted to be a nurse (and) I’m still a nurse. I thought the other day: This is ridiculous at my age. But I know a lot of nurses who are older than I am that are still going. Maybe that’s it. (Volunteering) keeps you involved in life. Or death. …”
Margaret realizes that the volunteering she does isn’t for everybody. One of her daughters, for instance, works in an office in Minneapolis. On a recent Thursday, the daughter gave blood; on Friday, she tutored refugees; on Saturday, she fed the homeless.
“Her skills (are not nursing) but she still feels the need to go out and help. I think a lot of people want to help and try a lot of different things before the thing that really fits them comes along. I think that’s OK. Everything (you do) gives you a different perspective.”
And age has little to do with anything. When she retired, Margaret joked to an older friend that now she was an elder.
“(My friend) said, ‘I’m an elder, Joe’s an elder, Ellen’s an elder. You are an elder-in-training.’ I thought, ‘I can do that.’ (When I retired) at 65, you tend to think, well, this is it — and it’s not. (Life) goes on and on and if you look at it as an elder-in-training, then you have a job. …
“It’s nice to know I can keep growing at my age. You don’t think about it, but you do (keep growing). Sometimes faster, I think, than when you were younger.”
Sometimes, Margaret will be with someone when they die.
“(I say), ‘Goodbye. You’re free to go.’ I usually say a prayer.
“The staff has procedures to follow (and) one time there was a nurse and a student nurse when this lady died. Or gentleman, I can’t remember. The nurse said (to the student), ‘You just stay here while I go do this.’ I could tell the poor girl was just really not comfortable.
“I finally said, ‘You know you really don’t have to stay here.’ I said, ‘I’m OK. I’m not afraid to be alone with them.’
“You don’t learn that young, you learn that as you grow, and it’s not (at all) fearful.”
Margaret will stay for a while longer in the hospital room.
“I guess I don’t think about it as they’re going to heaven. You want them to go to peace, to go wherever they want to go — back into the universe, whatever. At that point, it’s their individual destiny.
“For me, it’s just … being able to be there for somebody. So they’re not alone.
A small brown bottle of liquid sits on the table, positioned between the two men.
The glass has no label, but both the patient and the doctor know what it holds.
Cancer sufferer Ray Godbold, left, meets Dr Rodney Syme, of Dying with Dignity Victoria. Photo: Justin McManus
The sick man calls it “control” and the urologist calls it “medication”, but the non-prescription substance has another name.
Nembutal was once a common sedative but is now more often used by vets to put pets to sleep. It is also the drug of choice for those who believe in the “right to die” – when physical pain and emotional misery become too much to bear.
Ray Godbold, 59, wipes his runny nose and explains what has led him from his home in Inverloch to this Philip Island holiday shack, surrounded by chittering birds perched in coastal banksias.
He has come to meet with Dr Rodney Syme, 79, the controversial vice-president of Dying with Dignity Victoria, to discuss the final stage of his life and his control over how those minutes unfold.
They first met here 12 months ago. Godbold had stage four gastroesophageal cancer, which had spread to his liver and lymph nodes. They kept in touch as the disease progressed. Now they are back.
Reasons for concern have been mounting. The cancer is taking more of his metabolism away, along with his appetite and energy. His pain and discomfort are growing, with dizzy spells and a few falls.
“I can tell – in myself – that the cancer will eventually…” he pauses, stopping to gather his thoughts. “I’m not as well as I have been.”
Both men know how his disease will progress from here.
Catastrophic events such as a heart attack, pulmonary arrest, embolism or severe bleeding are a risk. Liver failure and jaundice are a concern and, as the cancer spreads, cachexia or “wasting”.
“If I was here in my underwear, you would see the ravages of the cancer on my body,” says Godbold. “If I took my clothes off, you would say I was already cachetic.”
Ray Godbold was once a palliative care nurse – he is now dying from gastroesophageal cancer.
Godbold talks the talk because he spent 34 years as a nurse. As a midwife, he has been in the delivery room for the arrival of so many newborns, and he has also been present in homes and hospices as countless others have died in his specialist palliative care.
Godbold knows what a bad death looks like, and he does not want that for himself or his loved ones. And so he wants that little brown bottle on the table. He wants control.
He does not want to meet any new doctors or nurses in his final days. He does not want a drip of morphine and Midazolam to send him into a coma.
He does not want strangers making decisions about his death while he is unconscious, while his family sits for hours, days or even weeks – waiting for his last breath.
He has been positive up until now, but new metastases have come up and there is a creeping “existential despair” about how the end will come.
“My thoughts are starting to get a little bit darker, about death approaching,” he says. “I have had a psychological change.”
Rodney Syme nods. He points out that doctors cannot measure pain, breathlessness or tiredness. They cannot quantify despair and therefore must accept that only the patient can judge when suffering becomes insufferable.
“That’s medication for you – some Nembutal,” he says. “You need to take that by mouth, and you will have total control of that. It’s not my intention that you take it. I hope you don’t need to take it. But if you run into a brick wall, then that is what I sometimes call the key to the fire escape.”
If needed, this small bottle of Nembutal will be enough to end Ray Godbold’s life.
The two men shake hands and begin discussing the efficacy of what is, in effect, a black market substance. Nembutal is a “border controlled drug”, possession of which is a breach of law. Penalties range from imprisonment to fines of up to $825,000.
“If you take it,” says Dr Syme, “you will go to sleep relatively quickly and peacefully, and you will not wake up.”
If Godbold ingests the powerful barbiturate, he will be able to talk to his family for a few minutes, but the conversation will slow. He might yawn deeply, lying there in his bedroom. He will close his eyes at times, and drift into sleep.
In unconsciousness, the drug will slow his brain activity and nervous system. His heart rate will weaken. His breathing will become shallow. He will be dead in perhaps 20 minutes.
“Thank you,” he says. “It gives me great peace of mind to know that I’ve got it in my possession. I very much appreciate what you’re doing for me.”
What both men are doing is taking a stand. They are mounting a public challenge to current laws that deny people the right to take their own life with the help of a doctor, through medication that can assist their passing in a peaceful and reliable way.
Ray Godbold and Dr Rodney Syme are making a public stand on the “right to die” issue.
They expect a reaction. They want a debate – about what Dr Syme has already done for decades.
Paul Russell, director of HOPE, an organisation devoted to preventing euthanasia and assisted suicide, said it was “frustrating” that any doctor would supply patients with life-ending medication. “Euthanasia is never safe.”
One of his main arguments against “right to die” legislation is the inevitable “incremental extension” of those laws. In the Netherlands and Belgium, he says, people have been euthanised after psychiatric illnesses, botched sex change operations, or fear of going into a nursing home.
The story of Ray Godbold creates an “impetus for change”, he says, but equally there are other stories that should create “cause for pause or thought”.
In Victoria, it is a criminal offence to incite, aid or abet a suicide, with a maximum penalty of five years’ jail, yet no Victorian doctor has been charged with assisting suicide in the past 50 years.
Ray Godbold with his wife, Robyn. Both are nurses, and know what suffering looks like.
Dr Syme says he has been “frightened” to publicly reveal his work as it might get him into “deep trouble”, but says the time for hiding has passed.
State Parliament has rejected 16 euthanasia bills over the past 20 years, and although a new inquiry into end of life choices has been launched, Dr Syme feels the issue needs a push.
He is happy to make his actions known, and is even delivering an address on the subject to the annual conference of the Royal Australasian College of Physicians later this month.
Offering people this kind of control, he says, helps relieve angst and potentially extends life by removing anxiety about death. Then finally, as a last resort, medication can be a way out of a protracted and gruesome passing.
“I’ve set out to challenge whether what I am doing here publicly is a criminal offence,” he says. “I believe I can argue that it’s not – that it’s good palliative medicine.”
Ray Godbold at home in Inverloch, tending the garden in readiness for winter.
Ray Godbold is a believer in palliative care. He knows it may be enough for him, as it was for right to die campaigner Peter Short.
But he does not want to be forced to rely on their restrictive processes when the end of his “mortal cycle” is near – when he believes he should have a choice.
“When it comes to the end of my life,” Godbold says, “my trust is with myself.”
In the meantime, he is painting the house, bedding down the garden for winter, and making sure there are no odd jobs left behind when he is gone.
He wants to be ready for that moment, in every way.
“I want to gather my family around me and just say goodbye, and go my way – not your way,” he says. “Now’s the time.” Complete Article HERE!
More than a dozen states, plus the District of Columbia, are considering controversial medically assisted death legislation this year.
The 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.
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!
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!
