Assisted Dying – Page 40 – The Amateur's Guide To Death & Dying

SOME PEOPLE JUST want to die. Not because they are trapped by depression, anxiety, public embarrassment, or financial ruin. No, these poor few have terminal illnesses. Faced with six months to live, and the knowledge that the majority of those 180 days will be bad ones, they seek a doctor’s prescription for an early death.

Soon, terminal patients in California could have that option. Currently sitting on Governor Jerry Brown’s desk is a bill that, if signed into law, would allow doctors to prescribe life-ending drugs. Not surprisingly, this is controversial. Proponents believe the law would save diseased people from the worst days of their prognoses. Opponents say the law violates the sanctity of life, and can be exploited by ill-meaning family, physicians, and insurance companies at the patient’s expense.

But there’s a third group who believe this debate misses the real problem: that the American health care system is just an all around miserable place to die.

In the 1990s, Dr. Jack Kevorkian’s name became synonymous with so-called assisted suicide. He argued, famously and flamboyantly, that patients should have the right to euthanasia if the suffering from age, disease, even mental illness overwhelmed their will to live. “The patient’s autonomy always, always should be respected, even if it is absolutely contrary, the decision is contrary to best medical advice and what the physician wants,” he once said in court.

Kevorkian lost his court battles, and spent eight years in a Michigan prison. But his fight was not in vain. Four states have since legalized physician-aided death (and would-be fifth New Mexico has a law in legal review). The first was Oregon, and its Death With Dignity Act has become the model for the rest. There the patient must first have a six-months-to-live prognosis. Then, the patient has to write a request to the physician (who may refuse on moral grounds). Two witnesses have to sign that request, one of whom is not related to the patient, not in the patient’s will, and not the patient’s physician or an employee of the patient’s health care facility.

If the first doctor approves the request, the patient has to give it to a second doctor, who examines medical records to confirm the diagnosis and make sure the patient has no mental illnesses that might affect his or her decision-making ability. After a fifteen-day waiting period, the patient has to confirm that he or she still wants the doctor’s aid in dying. Only then will the doctor prescribe the lethal prescription. And the patient is under no obligation to take it, either.

In fact, since it was passed into law, only about 65 percent of the 1,327 people prescribed the medication have used it.

Raising the stakes in California

On December 31, 2013, California resident Brittany Maynard had a master’s degree in education, several years of experience teaching abroad in orphanages, and a husband. On January 1, 2014, she had stage two brain cancer. She went through surgery, and the doctors cut away the cancerous parts of her brain. But in April, the disease returned. Stage four glioblastoma, with little hope of treatment. Her doctor informed her she had six months to live.

Given the choice, Maynard said she would rather die before the cancer’s debilitating final stages destroyed her health completely. A few months later, she moved from California to Oregon.

Maynard took her lethal dose of medication on November 1, 2014. Her last message, posted on her Facebook profile, read:

“Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.”

Maynard’s broadcasted decision put the public behind California’s bill. Like the other states’ laws, it is modeled after Oregon’s, with some some add-ons meant to assuage opponents. California patients would have to request aid in dying three times instead of twice. “The physician who prescribes the medication must have a one-on-one conversation with the patient, to verify that it is their choice, and that no one is putting any pressure on the patient,” says Ben Rich, a lawyer and expert in end-of-life bioethics, from the University of California, Davis. And after ten years, the law would expire.

Missing the point

But for some in the palliative care community—the doctors, nurses, and caregivers that manage end-of-life care—the battle over aid in dying is a distraction from the real problems that dying people face. “I think it’s a moot debate that’s divorced from the reality of end-of-life care,” says David Magnus, a bioethicist at Stanford Medical School. That reality is clear in a report published last year by the Institute of Medicine of the National Academies of Science.

Titled Dying in America, it showed that patients often can’t get—or don’t know about—the type of treatment they actually need to be comfortable and pain-free in their final months, weeks, days, and hours. This is probably tied to the fact that America only has half as many palliative care physicians as it needs.

That’s not all. Magnus says insurance companies favor big lifesaving efforts and shiny technology. “We put a lot of emphasis on technology and innovations, and this tends to downgrade communication,” says Magnus. And clear communication about death is probably the first prescription is probably what most terminal patients need most.

As a result, patients end up getting treatment that doesn’t help them have a more comfortable death. In fact, it become the opposite. “You’ve got a patient who is sick, going though a roller coaster ride,” says Magnus. This includes cycles of chemotherapy and remission, trips to surgery to intensive care to therapy to home, then back again. “And each time, it’s much more difficult on the patient and on the patient’s family,” he says.

“A lot of what we see are patients who have some sense that their condition is bad but are not told explicitly how bad their prognosis is,” says Magnus. For example, many patients don’t understand the difference between palliative and curative treatments. “When they hear that their condition is treatable, they think there is a chance that they can be cured,” says Magnus. But treatable, to physicians talking to a terminal patient, often mean simply easing that patient’s suffering. Treatable has nothing to do with living or dying.

Palliative communication

Other studies back up Dying in America. Last year, scientists published in the Journal of Oncology that with better communication, more terminal patients might choose hospice rather than more radiation or chemotherapy. A2005 study showed that doctors regularly missed opportunities to convey information to patients that would affect their decisions about end-of-life care. Magnus has also done research on doctor-patient communication, and what he sees is usually pretty dismal.

“The caveat, is it’s very hard to communicate bad news to families,” says Magnus. He says it’s understandable that doctors hedge their discussions towards the positive. This goes back to the end-of-life training that doctors do not receive in medical school.

But until the medical system gets fixed (don’t hold your breath), patients can circumvent the assisted death circus by getting advanced care directives, such as a living wills. These are legal documents that outline how you should be treated in the event of a severe illness, accident, or just plain growing old. “100 percent of us are going to die, and only a quarter of Americans have engaged in formal advanced care planning,” says Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, which advocates that people use April 16 to sit down, discuss, and develop their advanced care plan. The groups website has resources for drafting up the legal documents in every state.

In California, Governor Brown has until October 7¹ to sign the aid in dying bill into law. While he hasn’t tipped whether his pen will enact or veto, he has criticized the legislative gymnastics that let supporters get the bill voted on without first going through scrutiny by committees. Adding to speculation that he may veto, Brown is also a former Jesuit seminarian (Catholic groups oppose the bill).

But the bill has a groundswell of public support. According to a bipartisan public opinion poll, 69 percent of Californians are in favor of physician-aided death. “Why is this touching a nerve? Why is it millions of people want these laws on the books?” asks Magnus. He doesn’t believe it’s because so many people are terrified of having a sickness steal away their preferred choice: Life. Rather, he says it speaks to a more common fears: dying in pain, without control, without dignity, surrounded by people they do not know in a place they do not want to be. The choice that concerns them is not whether to die, it’s how.

¹ UPDATE: Correction 12:12am ET 9/30/2015 The original story said the enactment deadline was September 28. In California, the governor has 12 working days to act on bills (such as the End of Life Option Act) passed in special Assembly sessions. But, that time began when the bill landed on the governor’s desk (which was September 25), not when the bill cleared the Assembly (September 11). If the governor doesn’t sign or veto within that deadline, the bill automatically becomes law.

Complete Article HERE!

September 14, 2015September 14, 2015

The courage to die

By MARCIA SCHLOTTMANN

The day he was to die, Vernon Gearhard had breakfast with Fran, his wife of 57 years, their three children and their spouses.

He listened to some of his favorite music – classical pianist Johannes Brahms and opera singer Kathleen Battle – and around noon, he and Fran sat on their terrace. The sun peeked out from behind rain clouds and two bald eagles and several raven flew around nearby, lingering in the area as the couple watched.

The 84-year-old master mason had planned for this day. Friends and family had been visiting for the past month, many from nearby towns, others from as far away as Vermont. He had spent the last week with his family, including his seven grandchildren and three great-grandchildren.

It was time.

The medication – powder from 100 capsules of the barbiturate Seconal – had been mixed with water, creating a slurry-type paste that Vern could drink. He went into the bedroom and grabbed the bar he needed to use to pull himself from his wheelchair into a sitting position on the bed.

“This is the last damn time I have to grab this bar,” he told his wife, Fran.

He drank the medicinal slurry, washing it down with orange juice. His eyes rolled backward and he lay back on the bed. Thirty minutes later, surrounded by his family, his heart stopped beating.

“Just our children came in while he was dying,” Fran said. “I promised him that someone would be touching him the whole time.” She stayed with his body until the hearse arrived.

Fran remembers that day – March 17, 2015 – with tears and joy.

“It was so easy for him, finally,” she said. “It has been a long time since anything had been easy. … It was really a joyful thing.”

Vern, who had Parkinson’s disease, was given less than six months to live when he decided to end his life by taking prescribed medication through Oregon’s Death With Dignity Act.

On President’s Day, Feb. 16, 2015, Fran and Vern gathered their family together and told them of his decision. Their three children and their spouses were supportive. So was the rest of the family.

That support, Fran said, made it possible. “The kids really, really, really were there for us. I couldn’t have done it without their support.”

Since Oregon’s Death With Dignity Act was enacted in 1997 more than 860 terminally ill people have chosen to use it to end their lives. To do so, a patient must get the agreement of two doctors that he or she has six months or less to live. The patient also must go through an intensive interview process to determine his or her mental state and decision-making capabilities.

It’s not easy, Fran said, noting that the Gearhards had help from Compassion and Choices, a nonprofit advocacy group that provides trained volunteers and consultants to help terminally ill patients seeking end-of-life options. The Gearhards connected by phone with a Compassion and Choices volunteer in Ashland.

Vern was diagnosed with Parkinson’s disease about 20 years ago, when he was in his early 60s though family members say he had symptoms of the disease, including tremors, in his late 50s. He took medication and led a physically active lifestyle, which seemed to keep the disease’s symptoms at bay.

Parkinson’s disease is a progressive disorder of the nervous system that affects movement. It develops gradually, and early symptoms include tremors. In the later stages, muscle stiffness makes it difficult or impossible for patients to walk and take care of themselves.

Vern was born in Chicago, and grew up in Martinez, Calif. He joined the Navy and served in the Korean War from 1950-54. He then attended Cal Poly on the GI Bill and earned a degree in agronomy. Vern and Fran began dating while she was in college – she earned an education degree from San Francisco State University. They married her sophomore year in college. Several years later they bought acreage north of Merrill in 1965 and started farming.

Fran taught for 34 years, 28 of those as a fifth-grade teacher at Shasta Elementary in Klamath Falls. They raised three children – Theresa, Marcus and Paul.

The family farmed for 15 years, but masonry was in Vern’s blood. His grandfather, an Austrian immigrant, was a mason and Vern apprenticed under him. As farming changed, Vern spent more time on masonry and eventually worked at it fulltime, earning a reputation as master mason with an artistic and signature style.

After his Parkinson’s diagnosis, Vern continued to work as a master mason, creating artistic fireplaces, homes and other pieces for private clients as well as for local businesses. Some of his more prominent pieces include the Klamath Rotary sign downtown, the sign at the Herald and News building off Foothills Boulevard and the rock sign at Kla-Mo-Ya Casino off Highway 97 near Chiloquin.

He helped build his house, high on a hill, an artistic nod to a mason’s mastery of his craft. Inside, a rock fireplace dominates the great room and touches of his work are throughout.

Vern loved classical music, opera, and good literature. He belonged to two book groups and owned the first version of Kindle, an electronic book reader that launched in November 2007. By the time he died, he owned his eighth Kindle.

He also was a huge San Francisco Giants fan. “He always recorded the games he couldn’t watch,” Fran recalled. “God pity you if you told him the score before he could watch it.”

When he was 80, his symptoms — tremors, muscle and balance issues — forced him to retire. The disease progressed quickly after he stopped working. First, he had to use a cane and later, a wheelchair.

As the disease progressed, Vern needed help with everyday tasks, and then could no longer use his hands well enough to turn the pages on his Kindle. In his last month, he was sleeping nearly 20 hours a day and had limited energy.

“When he had to quit work, that was huge. When he had to quit driving, that was huge,” Fran said. “When he lost the ability to read, that was it.”

In November 2014, Fran, 78, faced her own mortality when she was diagnosed with stage 4 colon cancer. She decided to go through treatment so she could be there for Vern, who was thinking about his end-of-life options. She had surgery, followed with chemotherapy in January, and currently is cancer free.

Vern approached his doctor, who said though he supported Vern’s decision, he couldn’t write the Death With Dignity prescription. His physician did prescribe hospice, which is for patients who have been diagnosed with six months or less to live.

The Gearhards were able to find two other Klamath Falls physicians who were willing to consider Vern’s decision and work with them. The law requires both a prescribing physician and a consulting physician to agree on a diagnosis and prognosis as well as whether Vern was mentally capable of making the decision to end his life.

Klamath Hospice helped with Vern’s care and supported the family during his last months of life. Hospice does not advocate for or against the Death With Dignity Act, but provides support for patients and their families, Fran said.

When the time came, the law required that Vern take the prescription himself, holding the mug and drinking the medication without aid.

“His big worry was that he would be beyond the point where he could do it on his own,” said Dennis Ross, Vern’s son-in-law. “Your ability to follow through could be ended at any time.”

Ross was there the day of Vern’s death. An hour before he was to take the prescription, he had to take anti-nausea medication. The medication made him sleepy and he told his family: “I’m getting sleepy. We better get on with it.”

Ross, who had watched his parents die, believes the dying should have choices. His parents lived in California and didn’t have the same end-of-life options Vern did.

He watched Vern’s quality of life decline and supported his decision. “There’re just a thousand little things that take your dignity away,” he said. “It just piles up.”

But the end game is up to the patient.

“You can make all the plans, but when it comes down to drinking that stuff, that’s an incredible amount of courage,” Ross said.

Vern’s memorial was March 21 at his daughter’s home, a rock house he helped build near his own, and cars lined the road as family, clients and friends came to celebrate his life. Vern had picked the music he wanted played at his funeral – Mozart’s “Concerto in D-Minor, Second Movement” and John Lennon’s “Imagine.”

The Concerto in D-Minor was a piece Vern fell in love with in 1981 while he was collecting rock in Langell Valley. “He always listened to classical music while he worked,” Fran said. “That day he came home and said, ‘This is what I want played at my memorial.’ Before he died, he played it for his friends who came to visit, and for the hospice worker.”

Vern was an atheist and was curious about death.

“He always said he wanted to know so he wanted to be aware,” Fran said. “He was always very articulate about his perspective of life and death.”

“For us and for Vern – it was his decision – it was right,” she added. “It’s not for everyone, I understand. I just want to share the opportunity this law gave us.”

Fran recalled her husband’s last hours with joy.

It was around noon, just before the two of them went to sit on the terrace.

“Vern started to sob, and I asked, ‘What’s going on?’ He said, ‘I just feel so much love.’”

Fran smiled. “It’s a story with a beautiful ending.”

Complete Article HERE!

September 12, 2015

California Assembly approves right-to-die legislation

Debbie Ziegler holds a photo of her daughter — Brittany Maynard, the California woman with brain cancer who moved to Oregon to legally end her life last fall — during a news conference to announce the reintroduction of right-to-die legislation in August.

By PATRICK MCGREEVY AND PHIL WILLON

After nearly a quarter-century of efforts in California to afford terminally ill patients the right to end their lives with a doctor’s help, state lawmakers and the governor may be on the verge of granting the dying that authority.

The state Assembly on Wednesday passed a bill that would allow physicians to prescribe life-ending drugs to the terminally sick. The End of Life Option Act, which the Catholic Church and others oppose, awaits final approval by the Senate — three months after that chamber passed a similar bill by a thin margin.

The fate of the legislation is likely to rest with Gov. Jerry Brown, a former Jesuit seminary student who has yet to articulate his position on the measure. Brown has expressed concern about it, based more on legislative procedure than his own beliefs.

Modeled after an Oregon law enacted in 1997, California’s aid-in-dying proposal generated passionate, often deeply personal, debate among lawmakers that cut across party lines. Their discussions touched on questions of morality and mortality; trust in doctors and God’s grace; and the right of the dying to determine their own fate versus protection for the elderly and vulnerable.

Assemblywoman Susan Eggman (D-Stockton), a former hospice worker and the author of the legislation, accepted hugs from many of her colleagues after the 43-34 vote that ended a two-hour debate on Wednesday.

“This issue is of immense importance to all Californians,” said Eggman, who was an associate professor of social work at Sacramento State before being elected.

“I was confident that the full Assembly, reflective of and responsive to the people it represents, would do the right thing and move us closer to making it possible for terminally ill Californians to decide for themselves how to manage their last days,” she said.

Assemblyman Luis Alejo (D-Watsonville) said the bill would allow a peaceful and dignified end to suffering. Alejo choked with emotion as he talked about his father, a Vietnam veteran who is in pain from terminal bone cancer and wants to make his own decisions about the end of his life.

“Respect his choices,” Alejo said.

Assemblywoman Cheryl Brown (D-Rialto) opposed the measure, arguing that doctors may be too hasty in declaring patients terminal. She told lawmakers about her son, who was near death with an infection. Physicians urged her to let him go, and she refused. Nineteen days later, he came off life support and is now a husband and father.

“Doctors don’t know everything,” Brown said.

Despite such heartfelt opposition, the proposal gained momentum after Californian Brittany Maynard, 29, moved to Oregon last year so she could end her life with drugs to avoid the debilitating effects of brain cancer. Her case was covered nationwide, and in a videotaped appeal before her death Maynard urged California lawmakers to pass the assisted-death legislation.

“I am heartbroken that I had to leave behind my home, my community and my friends in California, but I am dying and refuse to lose my dignity,” Maynard says in the video. “I refuse to subject myself and my family to purposeless prolonged pain and suffering at the hands of an incurable disease.”

In July, an earlier version of the assisted suicide bill stalled in an Assembly health committee. The legislation was revived in August after Brown called for a special session on healthcare spending, primarily to address funding for Medi-Cal.

After the bill was reintroduced, a spokeswoman for the governor said the issue merited “careful consideration,” but debating it in the Legislature’s normal course of business was “more appropriate than the special session.”

The same objections were raised by Republicans but rejected by the Legislature’s Democratic leaders.

Similar bills failed in the Legislature in 2005 and 2007, and California voters rejected a 1992 proposal that would have allowed physicians to administer lethal injections to their patients.

Eggman recently amended her bill, AB X2-15, to expire in 10 years, at which time lawmakers could review how it worked and decide whether to extend it.

The End of Life Option Act would require patients to submit two oral requests for a lethal prescription, a minimum of 15 days apart, as well as a written request. The attending physician would receive all three requests.

The written one would be signed in front of two witnesses who attest that the patient is of sound mind and not under duress.

Opponents of the bill, such as advocates for the disabled, argued that the legislation might lead those with disabilities to be coerced to end their lives prematurely.

During Wednesday’s debate, Maynard’s husband and mother were present, joined by a dozen activists who watched from the Assembly gallery. There were cheers, tears and hugs when the vote was cast.

Dan Diaz, Maynard’s husband, was emotional in his response.

“There is a sense of pride in the Legislature,” Diaz said. “Today it reaffirmed the reason Brittany spoke to begin with. The Legislature will no longer abandon the terminally ill where hospice and palliative care are no longer an option. They can have a gentle passing.”

Complete Article HERE!

August 26, 2015

A Racial Gap In Attitudes Toward Hospice Care

By Sarah Varney

Pastor Vernal Harris and his wife Narseary Harris before regular church services at Prince of Peace Temple in Buffalo, N.Y. After experiencing hospice care during the death of their son Solomon, Harris and his wife have become advocates of Hospice care for the terminally ill in the communities they serve. (Photo by Brendan Bannon for The New York Times) — Pastor Vernal Harris and his wife Narseary Harris before regular church services at Prince of Peace Temple in Buffalo, N.Y. After experiencing hospice care during the death of their son Solomon, Harris and his wife have become advocates of Hospice care for the terminally ill in the communities they serve.

BUFFALO — Twice already Narseary and Vernal Harris have watched a son die. The first time — Paul, at age 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his incurable sickle cell disease progressed. When the same illness ravaged Solomon, at age 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother’s.

Their expectations were low. “They take your money,” Mrs. Harris said, describing what she had heard of hospice. “Your loved ones don’t see you anymore. You just go there and die.”

Hospice use has been growing fast in the United States as more people choose to avoid futile, often painful medical treatments in favor of palliative care and dying at home surrounded by loved ones. But the Harrises, who are African-American, belong to a demographic group that has long resisted the concept and whose suspicions remain deep-seated.

It is an attitude borne out by recent federal statistics showing that nearly half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives — legal documents meant to help families make life-or-death decisions that reflect a patient’s choices. Some 40 percent of whites aged 70 and over have such plans, compared with only 16 percent of blacks.

Instead, black Americans — far more so than whites — choose aggressive life-sustaining interventions, including resuscitation and mechanical ventilation, even when there is little chance of survival.

The racial gaps could widen when Medicare is expected to begin paying physicians in January 2016 for end-of-life counseling, and at a time when blacks and other minorities are projected to make up 42 percent of people 65 and over in 2050, up from 20 percent in 2000.

At the root of the resistance, say researchers and black physicians, is a toxic distrust of a health care system that once displayed “No Negroes” signs at hospitals, performed involuntary sterilizations on black women and, in an infamous Tuskegee study, purposely left hundreds of black men untreated for syphilis.

maisha1 — Dr. Maisha Robinson, a neurologist at the University of California, Los Angeles.

“You have people who’ve had a difficult time getting access to care throughout their lifetimes” because of poverty, lack of health insurance or difficulty finding a medical provider, said Dr. Maisha Robinson, a neurologist and palliative medicine physician at the Mayo Clinic in Jacksonville, Fla. “And then you have a physician who’s saying, ‘I think that we need to transition your mother, father, grandmother to comfort care or palliative care.’ People are skeptical of that.”

Federal policies surrounding hospice also arouse suspicion in black communities since Medicare currently requires patients to give up life-sustaining therapies in order to receive hospice benefits.

That trade-off strikes some black families, who believe they have long had to fight for quality medical care, as unfair, said Dr. Kimberly Johnson, a Duke University associate professor of medicine who has studied African-American attitudes about hospice.

Dr. Johnson said her black patients were more likely to believe there are actual religious prohibitions against limiting life-sustaining therapy, and that suffering can be redemptive, or “a test from God.” And those beliefs, she added, were “contrary to the hospice philosophy of care.”

But now some doctors and clergy members are trying to use church settings to reshape the black community’s views, incorporating the topic in sermons, Bible study groups and grief and bereavement ministries.

Dr. Robinson, who is black and a daughter of Tennessee pastors, has been helping pastors develop faith-based hospice guidelines. She tells them, “God can work miracles, yes he can, but even in hospice.”

That message recently rang out from the pulpit at God Answers Prayer Ministries, an African- American church in South Los Angeles, as Bishop Gwendolyn Coates-Stone tried a sermon theme on advance care.

“It’s such a great cost to hold on to some of those sicknesses and diseases that eventually are going to take us out,” she exclaimed into a microphone, bobbing and weaving in a swirl of royal purple robes. “Just like Jesus talked about his death and prepared his disciples for his death, we ought to be preparing our disciples for our death!”

In a moment of benediction, Bishop Coates-Stone made a direct plea: “Help us Lord to have the courage to have conversations with our families,” she said, “that will also not leave them wandering and wondering, ‘What should I do in case of the death of a loved one?’”

A gathering of older blacks convened recently by Dr. Robinson in Leimert Park, a middle-class Los Angeles neighborhood, underscored the challenges such efforts still face.

“Hospice has not been a good place for African-Americans, unless you’re in a white facility and usually you’re one of few black people there,” said one woman, who along with others attending the gathering asked not to be identified in order to speak frankly.

That sentiment was greeted by nods from others in the group. “It gets into money,” another woman said. “The treatment is a little bit better, but then there is still the discrimination.”

Advance directives, in particular, are often seen as sinister, a way for insurance companies to maximize profits. “If you say you want at all costs to live, and they say, ‘Well, your insurance company doesn’t allow that,’ then they’re going to pull the plug anyway,” said the host of the gathering, Loretta Jones, 73, founder of Healthy African-American Families in Los Angeles.

To help allay those concerns, physicians need to be more explicit during end-of-life discussions, Dr. Robinson said. “We have to be much clearer about why we’re trying to have those conversations, or we’ll continue to see a pattern of people who really want life-sustaining interventions even when there’s limited potential benefit.”

Camille Wicher, vice president of clinical operations at Roswell Park Cancer Institute in Buffalo, who has studied African-Americans’ end-of-life choices, said hospitals needed to enlist black families who have had good hospice experiences to share their stories with friends and church members.

“That’s how we learn,” she added. “We learn from each other.”

The Harrises are trying to use their experience to carry out that work.

The agony of their son Paul’s death in a hospital room informed their treatment decisions when their next son, Solomon, became gravely ill. When his doctor conceded that blood transfusions were of little help, Solomon assented to hospice care in his parents’ home. If he was going to be robbed of his future, Solomon would not, his parents decided, be robbed of a good death.

As his health failed, nurses from the hospice in Buffalo managed his pain and bathed him tenderly. A social worker helped the family grieve and counseled his young children.

All the while, parishioners from his parents’ church visited Solomon, amazed to find that hospice was not the grim banishment they had always envisioned.

“One of the members said, ‘I thought you were going to put Solomon in hospice,’ ” Mrs. Harris recalled. “I said, ‘We did.’ ‘Well, when is he going?’ I said, ‘They come here.’ ‘They come to your house?’ ‘Yeah, they’re taking care of him right here.’ ”

There was even time for reflection, as Solomon wrote in a poem called “After Life.”

“Fear death?” he wrote. “No, I await death.”

Solomon died a short while later, but the Harrises say his death has had a lasting impact.

“The people in our immediate circle now view hospice positively,” Mrs. Harris said. “I think our experience was powerful enough that it changed people’s attitudes.”

Mr. Harris, the pastor of Prince of Peace Temple Church of God in Christ, often evangelizes about hospice during his Sunday morning sermons, while Mrs. Harris has enlisted the wives of black pastors in Western New York, known as the “First Ladies,” to counter negative views about palliative care. At a recent meeting, the women discussed older church members who might benefit from hospice, and Mrs. Harris wanted to hear how parishioners in the women’s churches responded to some recent outreach.

“It really opened up people’s eyes to the negative stigma of it, feeling like, ‘I’m just putting my loved one away, and not caring for them,’ ” said Joyce Badger of Bethesda World Harvest International Church in Buffalo. “The power of knowledge that we’ve gained is really going to help our community.”

Complete Article HERE!

August 25, 2015

The Liberty to End One’s Life

How the marriage equality movement led the way for death with dignity.

By Mark Joseph Stern

Aja Riggs doesn’t want the state of New Mexico to dictate how she’ll die. Riggs suffers from uterine cancer—currently in remission, but likely to return—and fears it will leave her in excruciating pain during her final days. To avoid so much torment, Riggs wants to be sure her doctor can ease her into death through a painless overdose if she so chooses. But New Mexico law prohibits physician-assisted suicide. So Riggs, along with two oncologists, is suing to have the statute struck down as a violation of her fundamental rights under the state constitution.

Initially, Riggs scored a major win in a state district court, which found that terminally ill patients have a fundamental liberty interest in securing assisted suicide. Earlier this month, however, an appeals court reversed that ruling. The setback is probably temporary. Bolstered by a blistering, incisive dissent, Riggs is taking her case to the progressive state Supreme Court. There, she hopes she can persuade the justices to force New Mexico to respect the legal rights of dying patients.

Court challenges to assisted suicide bans are nothing new. In a 1997 case calledWashington v. Glucksberg, a badly fractured U.S. Supreme Court rejected a broad challenge to Washington’s prohibition. Five members of the court held that the right “to assistance in committing suicide is not a fundamental liberty interested protected by the Due Process Clause.” Only “those personal activities and decisions” that are “deeply rooted in our history and traditions,” the majority wrote, are protected by the Constitution—and assisted suicide is not “deeply rooted” in the American tradition. At the same time, five justices also found that “suffering patients” may have “a constitutionally cognizable interest in obtaining relief from the suffering that they may experience in the last days of their lives.”

This apparently contradictory ruling was the handiwork of Justice Sandra Day O’Connor. A consummate baby-splitter, O’Connor tried to bridge the gap between the court’s liberal and conservative blocs. Instead, she created a paradoxical ruling that has, ever since, stood on extremely shaky constitutional grounds. In fact, the court’s recent ruling in the same-sex marriage case Obergefell v. Hodges seriously dented the validity of Glucksberg by replacing its crabbed logic with a more modern, expansive definition of “liberty.” (Chief Justice John Roberts accused the Obergefellmajority of “effectively overruling” Glucksberg—as though that’s a bad thing.)

The New Mexico Constitution has a due process clause that’s virtually identical to the one in the United States Constitution, which holds in the Fifth and 14^th amendments that no one shall be deprived of “life, liberty, or property, without due process of law.” Like the federal version, New Mexico’s protects substantive rights fundamental to individual dignity and autonomy. But the New Mexico Supreme Court has declared that its state constitution may be interpreted more expansively, to encompass a grander definition of individual dignity. Riggs argues that the New Mexico Constitution should protect her right to choose when to end her suffering.

In a somewhat apologetic decision, the court of appeals refused to allow this more generous reading, holding that the state may force a terminally ill patient in extreme agony to remain alive until her life reaches “its natural end.” But in dissent, Judge Linda M. Vanzi laid waste to the majority’s argument, writing that it “reflects a shocking disrespect for the individuals whose circumstances would bring them to seek aid in dying.” Vanzi first notes, correctly, that Obergefell seriously erodes—and maybe even overrules—Glucksberg. (Same-sex marriage, after all, certainly isn’t “deeply rooted” in American history.) She then explains that even ifGlucksberg remained good law, she would “reject it as unpersuasive, flawed, and inadequate to protect the rights of New Mexicans.” Instead, Vanzi writes that New Mexico’s own traditional respect for individual autonomy should lead the court to hold that the state’s citizens have a “liberty right to aid in dying from a willing physician.”

And if New Mexico’s due process clause implies this right, another provision all but demands it. In a passage unique to the New Mexico Constitution, “all persons” in the state are promised “natural, inherent and inalienable rights.” Among these are “the rights of enjoying and defending life and liberty … and of seeking and obtaining safety and happiness.” This provision, Vanzi asserts, “affords New Mexico citizens the right and agency to defend their lives and liberty by availing themselves of aid in dying” when terminally ill. The state simply cannot justify “intrud[ing] upon the doctor-patient relationship as it relates to the constitutional right to aid in dying.” Vanzi concludes:

The question at the heart of this case is who has the right to decide when and how a mentally competent, terminally ill New Mexican will end her life after the options for meaningful improvement of her terminal condition have been exhausted, such that “life” means being forced to endure unbearable suffering until death arrives. … Other choices and decisions central to personal autonomy and dignity have long enjoyed the status of constitutionally protected liberty interests. I would hold that the New Mexico Constitution protects aid in dying as a liberty interest.

Vanzi’s brave, powerful dissent is likely to become a rallying cry for the death with dignity movement. But it is also aimed squarely at the New Mexico Supreme Court itself, to which Riggs will appeal her case. There, she may have more luck: All five justices are Democrat-affiliated and have proven quite liberal on issues of personal dignity, including marriage equality. Should they side with Riggs, New Mexico will become the fifth state where terminally ill patients are afforded the liberty to end their lives. That might help create momentum in other states whose legislatures are considering assisted suicide measures.

As the death with dignity movement builds a critical mass, social and political pressure may force even conservative states to consider easing restrictions on physician-aided suicide. This model worked gangbusters with same-sex marriage, and death with dignity advocates are clearly hoping to employ it for their own cause. Eventually, they may even achieve an Obergefell-type ruling for the movement declaring that the American conception of liberty includes a right for terminally ill patients to choose when to die.

Of course, opponents of physician-assisted suicide like to argue that legislatures, not the courts, should decide the legality of the practice. Yet the constitutional guarantees of life and liberty ring hollow if patients like Aja Riggs are deprived the liberty to end their own lives.

Complete Article HERE!

August 14, 2015

Right-to-die advocate dies without reprieve: San Mateo resident Jennifer Glass fought for new legislation

By Samantha Weigel

Just months after urging the California Legislature to empower her to cease her suffering on her own terms as she battled an aggressive form of cancer, Jennifer Glass died in her San Mateo home Tuesday night.

jennifer-glass — Jennifer Glass died in her San Mateo home Tuesday night after battling stage 4 lung cancer. Glass had sought changes to state legislation so she could have controlled how she died.

Despite her condition, the 52-year-old was an active advocate for Senate Bill 128: End of Life Option Act and her supporters remain saddened the legislation, which could have allowed Glass to avoid more suffering, stagnated in the Assembly.

A former communications specialist who took charge of high-power campaigns such as for Facebook and Oracle, Glass turned her attention to the state’s right-to-die initiative after being diagnosed with stage 4 lung cancer in 2012, just four months after marrying her husband Harlan Seymour.

A national spokeswoman for the movement who worked closely with the advocacy group Compassion and Choices, Glass died while California lawmakers stalled on a right-to-die law. SB 128 would give patients who are terminally ill the right to terminate their own life after completing a series of checks and balances with doctors and mental health professionals.

Glass fought to extend her life through chemotherapy as well as radiation and even did better for a time; however, a CT scan taken in June of this year showed her cancer had spread to her lungs, liver, abdomen, pelvis and brain. Unable to tolerate chemo, she decided to die at home, Seymour said.

As her lungs filled with fluid making breathing difficult and her pain increased, Glass opted to undergo palliative sedation — a process in which she is medicated into a coma then nutrition and fluids are withheld until the patient dies from the disease or dehydration.

It took her more than five days to die, a disheartening time marked by her awaking from the coma in a panic one evening, Seymour said.

“By the time she started palliative sedation, she was in so much pain, she really couldn’t say goodbye to people. If there was an end-of-life option, she could have started earlier, even just one day, she could have said goodbye to her loved ones and had a quiet death,” Seymour said. “Palliative sedation is really just a slow motion version of what the end-of-life option offers. Instead of a seven-day, dragged-out death in a coma, it’s a death that could just last a few hours and allows for a better ending with one’s family. … It would have been a great comfort to her if she had the choice to end her life in a faster manner. She would have suffered less.”

Had SB 128 been enacted, Glass would have been able to obtain aid in dying through prescription medication that she could have taken at home allowing her to die in her sleep, sometimes in as little as 30 minutes — as in the case of Brittany Maynard, a 29-year-old Bay Area resident who moved to Oregon to exercise her right to die, according to a press release from Compassion and Choices.

Opposition

Opponents say SB 128 could have unintended consequences as insurance companies looking to cut costs or those without good access to health care may be more inclined to use these types of laws.

“The concerns of our coalition, there are many but primarily, is that you cannot base broad public policy decisions on one case, you have to look at all of California and not just a single individual or a narrow group of individuals,” said Tim Rosales, spokesman with the Californians Against Assisted Suicide. “Consider how these policies would impact everyone in a state as diverse as California; particularly in parts of California where people do not have access to the types of health care where they can get second and third opinions or access to better treatment.”

Rosales noted many states across the country turned down legislation dealing with the issue this year and instead, California should focus on making hospice and palliative sedation more accessible.

Another option

While opponents often cite palliative sedation as a suitable alternative, representatives from Compassion and Choices argue Glass’ case proves it didn’t allow her to die peacefully.

“With Jennifer, it obviously did not work as effectively. … It’s really important for people to understand that in reality, palliative sedation does not work for everyone and those folks need another option. Medical aid in dying is that option,” said Toni Broaddus, campaign director for Compassion and Choices California. “In that sense, this legislation is really somewhat neutral because it doesn’t tell anyone what they have to do at the end of their life, but it says you can have all the medically possible options out there at the end of life. Public policy, and this is good public policy, I think is for the state not to be telling people they can’t have access to a service or prescription that many other states are using.”

Glass’ family agreed adding palliative sedation is not as dignified and can be much more painful for both the patient and their loved ones. Glass’ sister Mavis Prall noted it was not the quick nor peaceful option she was fighting for.

“She did not want her loved ones to have to watch the life drain from her over a five-day period, nor to watch her lose all dignity as her body slowly shut down,” Prall said in the press release. “Members of the California Legislature should be aware that their inaction has painful consequences. I urge them to pass the End of Life Option Act this year.”

Glass publicly spoke in support of SB 128, co-authored by state Sen. Bill Monning, D-Carmel, as she fought to provide those who are suffering with a choice.

‘Keep fighting’

Glass had been scheduled to testify in the Assembly’s Committee on Health July 7 but the hearing was canceled and has yet to be rescheduled. Broaddus acknowledged while SB 128 easily passed the Senate, there weren’t enough votes in the Assembly. Yet as Glass requested, they will continue to advocate for the bill to be adopted this year, Broaddus said.

“Her message to us had been ‘keep fighting, don’t stop fighting,’” Broaddus said. “This issue is very very personal for people. Despite what it may appear, it does not break down party lines or ideological lines. It’s something people look at very personally based on their own experience.”

Sen. Monning expressed his condolences while noting SB 128 is still in action.

“My heart goes out to her family. We will continue to pursue Jennifer’s commitment to establish the right of terminally ill patients to have all end-of-life options made available to them,” Monning wrote in a press release.

Legacy

Seymour said he would continue to support the right-to-die movement that could have spared his wife from further suffering and prefers she be remembered as a strong, loving and logical woman.

“Jennifer was very worried about suffering greatly in the process of her death, and she was concerned about what it would do to her loved ones. She didn’t want to die drowning in her own lung fluid and that’s essentially how she died,” Seymour said. “If you allow palliative sedation, there’s no reason not to allow a faster, less traumatic, less painful way of going as well. … I really want to see Jennifer’s legacy and her dream of having an end-of-life option come true.”
Complete Article HERE!

August 6, 2015August 6, 2015

Island resident one of few to choose death with dignity

by SUSAN MCCABE

These days it’s common to openly discuss topics that past generations would have considered rude, such as sex, money, politics and religion. Death on the other hand, particularly one’s own, often remains a conversational taboo for many, though it’s probably one of the most important discussions to be had with those closest to us.

In this state, some people are taking that final topical frontier out of the humidor with death cafes and advanced directives. Some also are taking action with Compassion & Choices, the organization now working with residents in Washington, Vermont and Oregon who choose physician assisted suicide (PAS) when they are diagnosed with fewer than six months to live and no reprieve in sight. Former Washington Governor Booth Gardner led the voter initiative that legalized PAS in this state in 2008, as he faced his own demise from Parkinson’s disease.

Only a small number of people in Washington have taken advantage of the law since its passage. One of them, islander Greg Smith, followed through on his choice on July 27, peacefully surrounded by loved ones. Smith was a long-time advocate of death with dignity and, in an effort to enlighten others, he recorded a conversation with his friend, Lin Noah, on a Voice of Vashon episode of Island Crossroads about two weeks before his final going away party.

Smith was candid in telling the story of his battle with lung cancer, which returned “with a vengeance” two years ago. In May of this year, his doctors told him there was nothing more they could do and that he had two to six months to live. Smith said his decision to take his own life had germinated well before that — at his initial diagnosis.

“I’d seen friends and family members leave this mortal coil with the disease,” he explained, “and realized that was not the end I wanted for myself.”

To offer a chance for family and friends to say goodbye, Smith organized a party for the night before he was to drink his final cocktail.

To assure that key friends and family could attend, “I had to schedule my suicide around other people’s vacations,” he said laughing. He added that he chose a date just three months after his final diagnosis because he didn’t want his sons to go through the final stages of lung cancer with him.

Smith’s sons, ages 31 and 28, spent considerable time working with him to accept his early demise – Smith was only 61 – and respect his wishes for a peaceful passage. Smith called his choice an opportunity to “stand up with dignity, face cancer and embrace my sons one last time,” rather than dwindle from life in small and excruciating increments.

Snubbing his nose at cancer, Smith said he chose PAS to take control of his life away from the disease and end it on his own terms. Smith had written on a national PAS blog for some time, urging people in other states to have the freedom to choose. One reader took his impassioned diary to the American Medical Association’s (AMA) national convention. The follow-up report was that the AMA’s ethics committee reviewed Smith’s diary with fresh eyes, generating hope that the association might reconsider their opposition to PAS.

To those who would wonder if he might change his mind, Smith said he didn’t want to continue “playing roulette” with the end of his life and that he was ready to say goodbye. He added that with the awareness of death’s imminence, he felt he had used his time well, deepening important relationships.

Some would say doctors have been behind the curve in the move toward choices at the end of life. Naturopath Brad Lichtenstein leads so-called death cafes in Seattle, where people gather over coffee to address the inevitable, honestly and in a safe environment. He has stated that while most physicians eschew heroic measures at the end of their own lives in favor of dying quietly at home, they often implement every available life-prolonging tool for their patients.

“For a physician, when a patient dies, they’ve failed,” he explained.

Statistics show that more money is spent in the last months of life on extra measures that often will not prolong life at all. But, in the absence of a living will or advance directives, doctors will do everything possible to keep a patient technically alive.

Lichtenstein’s death cafes, the growth in the number of palliative care physicians and the entry of hospice care into the mainstream all herald changes in the end-of-life field. Soon, islanders will have access to a program to assist in the process of identifying preferences and creating advance directives for end of life before it is imminent. Called Honoring Choices, it is based on a model that originated in Lacrosse, Wisconsin, and will be offered by nurse practitioner Wendy Noble, and Carol Spangler, who has a graduate degree in public health. The two will offer facilitation services to families free of charge.

Noble and Spangler will host a presentation on Thursday by Bernard “Bud” Hammes, Ph.D., the medical ethicist who developed and directs the Wisconsin program (Respecting Choices). Hammes, an international leader in the field of end of life issues and advance care planning, has been featured on NPR, ABC’s Good Morning America, CBS Sunday Morning, NBC Rock Center and, most recently, on the PBS program, “Caring for Mom and Dad.”

He will appear with, among others, representatives from Honoring Choices Pacific Northwest, the Snohomish County Health Leadership Coalition and the Whatcom Alliance for Health Advancement, two organizations that have successfully implemented the program in their communities.

The presentation, according to Noble and Spangler, will provide specifics on what advance care planning means, why it’s important and what’s happening in the state to help people develop advance care plans.

What the two say they hope to do on Vashon is two-tiered. Their first step is to train others in the process of facilitating Honoring Choices.

“With a trained team,” said Noble, “we’ll begin small group conversations about advance directives and provide appropriate documents and instructions for completing and filing those directives.”

And when invited, they’ll meet with individuals and their families to help clarify their wishes for end of life health care.

As Spangler noted, “Determining and sharing end of life choices is a process. It’s a difficult discussion to start with one’s family.”

She and Noble say they are committed to helping Island residents start those discussions and share their decisions.

Professionals in the “death trade,” as it’s often referred to, agree that discussions of death and dying are really about living. With the implementation of this program, it appears that Vashon will soon be a place where people are ready to lead both the exploration and the conversation.

Complete Article HERE!