Will California’s end-of-life law push lethal drugs over costlier care?

Kevin McCarty, Susan Talamantes Eggman, Jay Overnolte
Assemblywoman Susan Talamantes Eggman (D-Stockton) is congratulated by Assemblymen Kevin McCarty (D-Sacramento), left, and Jay Obernolte (R-Big Bear Lake) after her right-to die measure was approved by the full Assembly in September.

By Soumya Karlamangla

Terminally ill cancer patient Barbara Wagner’s doctor wrote a prescription several years ago intended to extend her life a few extra months. But Oregon’s government-run healthcare program declined to pay for the pricey drug, saying the projected odds of the medicine’s keeping her alive were too low.

Adding to the distress of the rejection, Wagner later complained publicly, was what else was included in the denial letter she received. The state listed doctor-aided death as one of the treatment options that would be completely covered.

“[They] basically said if you want to take the pills, we will help you get that from the doctor and we will stand there and watch you die, but we won’t give you the medication to live,” Wagner said in a television interview at the time.

Wagner’s case became a flash point of the medical ethics debate over helping the terminally ill end their lives in Oregon, the state that pioneered the practice in the U.S. nearly two decades ago.

Now, as California pushes ahead with a similar initiative, experts say state officials here could face their own ethical controversies as they weigh details such as who should pay for life-ending care, particularly for patients in government-backed health plans.

Covering lethal prescribed drugs for such patients without also offering to pay for other far more costly end-of-life treatments could inadvertently pressure people into choosing the cheaper option, said Dr. Aaron Kheriaty, a UC Irvine psychiatrist and director of the university’s medical ethics program.

“It’s certainly a cost-saver,” he said.

Supporters of California’s law and other experts say it ensures life-ending decisions will be left to patients and that covering drugs that aid in dying won’t push people to make that choice. So few people will opt for doctor-assisted deaths, they argue, that the financial savings will be tiny compared with overall healthcare costs and won’t create a significant economic incentive for insurance carriers to even subtly encourage that medical alternative.

Under California’s End of Life Option Act signed by Gov. Jerry Brown this month, physicians, starting sometime in 2016, will be allowed to prescribe lethal drugs to adults diagnosed with terminal illnesses who are expected to die within six months and request assistance to end their lives.

The law does not require private insurance companies to cover such medicine. And state officials with Medi-Cal, the health program for the poor that covers more than 12 million people, say they haven’t determined whether their plan will pay for such treatments.

A state legislative committee analysis concluded that any costs or savings for Medi-Cal from legalizing doctor-aided death would be minor, depending on whether the lethal drugs are covered. The biggest projected expenditure would be about $323,000 to set up and operate a data system to manage paperwork associated with the program.

Many health advocates and experts expect Medi-Cal, like Oregon’s state-run health plan for the poor, to cover the life-ending treatment.

William Toffler, a family physician in Oregon, says California would be making a mistake. He contends that Medi-Cal officials would be forced into a new and significant ethical dilemma, balancing their responsibility to control costs and ration care with ensuring that patients receive the most effective medical treatment possible. The barbiturates prescribed to patients to end their lives cost about $1,500. Average healthcare spending in a patient’s last year of life is $33,486, according to federal data.

“It’s a terribly wrong-headed move. It’s a conflict of interest for doctors; it’s a conflict of interest for the state,” Toffler said.

Vermont and Washington — which more recently permitted physicians to write lethal prescriptions — and the federal government’s Medicare health plan do not cover the drugs. Representatives from both state programs declined requests to discuss their reasoning.

Officials from Oregon’s health plan say that physician-assisted death is just one of many covered medical options offered to terminally ill patients, along with hospice care and pain medications.

Wagner was told in 2008 that she had only a few months to live. She was prescribed a medicine that might have extended her life for a limited time, at a cost of $4,000 a month. Oregon’s health plan denied coverage, based on a policy that requires treatments to provide at least a 5% survival rate after five years.

Advocates said the case was blown out of proportion by the media and critics. The denial of the costlier drug wasn’t because of its price, but its low efficacy, they said.

“Barbara Wagner was not harmed by the Oregon aid-in-dying law. She was not harmed by the Oregon Medicaid system,” said Barbara Coombs Lee, president of the groupCompassion & Choices, which pushed for the law.

After the media focused on the case, the manufacturer of the drug prescribed by Wagner’s doctor offered her the pills free of charge. She died soon thereafter.

Oregon health officials subsequently halted the practice of listing lethal drugs as an alternative treatment offered to terminally ill patients who were denied other treatments under their coverage.

“I think the state Medicaid system learned to be a little more tactful,” Coombs Lee said.

Apparently learning from Oregon’s experience in Wagner’s case, California lawmakers included in the new legislation that insurance plans are prohibited from including in a treatment denial letter information on the availability of aid-in-dying drugs.

Christian Burkin, a spokesman for Assemblywoman Susan Talamantes Eggman (D-Stockton), who wrote the bill, said that “no one should be subjected to even the appearance or suggestion of being influenced to choose the end-of-life option.”

Some fear the pressures to choose assisted death could be more subtle.

Daniel Sulmasy, a physician and medical ethics professor at the University of Chicago, concluded in a 1998 research study that physicians inclined to conserve resources were more likely to write lethal prescriptions for terminally ill patients than those not concerned about keeping costs down.

That’s particularly worrisome, Sulmasy said in an interview, as California tries to manage the growing costs of Medi-Cal.

Under Obamacare, about a third of all Californians are now covered by the program, and its costs have climbed 74% since 2013 to more than $91 billion a year.

The federal government covers most of the costs but will begin shifting the expenses to the state after next year. California is already struggling with an $18-billion annual contribution, and that will rise in coming years.

Sulmasy also argues that as lethal treatments for the dying become more common, patients could face societal pressures from friends and relatives to unburden their caregivers or avoid racking up medical bills that drain family wealth.

But Oregon patient data have shown little evidence of that, says Coombs Lee, who was a nurse before she cowrote Oregon’s Death With Dignity Law. Of the roughly 860 people who have died in this way in Oregon since the law was enacted in 1997, 98% had state or private health insurance — and private plans tend to cover more end-of-life medical treatments.

Coombs Lee pointed to a new study that shows Oregon has some of the nation’s highest rates of hospice usage — and lowest levels of potentially concerning hospice care. She said that indicates, overall, that the state’s death with dignity law is improving end-of-life care.

“There’s no red flags,” Coombs Lee said.

Ezekiel Emanuel, an oncologist and bioethicist at the University of Pennsylvania, said that doctor-aided death for the terminally ill doesn’t offer insurers much opportunity to cut expenses.

“It’ll have an almost undetectable impact on healthcare costs,” said Emanuel, who helped draft the federal Affordable Care Act.

A 1998 study he conducted estimated legalization of lethal prescriptions nationwide would save less than 0.1% of total healthcare spending, chiefly because very few people would want them.

“It’s a law for the 0.1%,” he said.
Complete Article HERE!

California Doctors Get Advice On How To Provide Aid In Dying

doctor-consultation
Doctors may get questions about dosing and timing of medication from patients considering aid in dying.

By April Dembosky

Now that California has legalized aid in dying, advocacy groups are planning statewide education campaigns so doctors know what to do when patients ask for lethal medication to end their lives.

One of the first stops for doctors new to the practice is a doctor-to-doctor toll-free helpline. It’s staffed by physicians from states where the practice is legal, who have experience writing prescriptions for lethal medication.

“We try to answer any doctor’s phone call within 24 hours,” says David Grube, a retired family doctor in Oregon who accepts calls. “I might answer questions about the dose of medicine, the timing of the giving of the medicine, things to avoid, certain kinds of foods.”

Grube recommends prescribing a specific dose of sleeping pills, along with anti-nausea medication. People usually fall asleep within five minutes after taking the drug, and usually pass away within an hour.

This kind of information will also be shared in training sessions, online and at hospitals and medical schools throughout the state before and after the law takes effect in 2016. The precise date is not set; it will take effect 90 days after the end of the ongoing special legislative session.

“Health care systems should start preparing now for their patients who are going to be requesting, and demanding, information about the End of Life Option Act,” says Kat West, policy director for Compassion & Choices, the advocacy group that led the charge for legalization in California and is spearheading the education campaign.

She says a few health care systems in California have called their counterparts in Oregon, where the practice has been legal since 1997, to find out how they have implemented the law there. For example, Kaiser Permanente in Oregon and Seattle Cancer Care in Washington hired patient advocates specifically to respond to requests for aid-in-dying medication and to guide patients and doctors through the process.

Medically-assisted suicide is also legal in Vermont and Montana. But West says California has some key differences that will influence implementation here.

“The challenge, of course, is California is so big,” West says. But “in some ways, California is in a better position to start implementing aid-in-dying, because the infrastructure is already good and in place.”

Opponents have vowed to try to block the law from taking effect.

A group calling itself Seniors Against Suicide filed paperwork this week to put a referendum before voters in November 2016, asking them to overturn the new law. The group needs to collect 365,880 signatures by January to qualify for the ballot, though it’s unclear if they have enough money to run a statewide campaign.

In Oregon, the law was delayed from taking effect for three years because of a lawsuit filed by the federal government. But West says that was 20 years ago, and is unlikely to happen in California.

Californians Against Assisted Suicide, a coalition of religious groups and disability rights advocates who fought the law through the legislative process, says it has not yet decided whether it will sue to stop the law from going into effect.

California’s department of public health will be required to collect and store data about who requests the lethal drugs, and who takes them.

Complete Article HERE!

Doula for the dying: Connecting birth and death

BY AMY WRIGHT GLENN

Amy Doula Dying
Daughters of 97-year-old Utah native William Vance Wright hold vigil.

The last time I saw my grandfather, he was 95 years old. He walked with a bent back. Kindness graced his watery eyes.

During dinner, he asked me how old my son was at least four times.

“Is he 2?” he inquired once again.

“Almost. He’s 21 months, Grandpa,” I answered.

He smiled and returned to eating his tilapia, mashed potatoes and squash.

At the end of our visit, I walked him to the car. As we approached the steps leading down to the garage, he mentioned his bad knee – an injury from the war.

“I can do it,” he said, gently refusing my hand. “Just one step at a time.”

As my uncle opened the car door, my grandpa suddenly stopped. He turned back to look at me. He kissed his hand and lifted it up in the air. I blew a kiss back to him. He “caught it,” then brought it to his cheek with a knowing smile.

The last time I saw my grandfather, he blew me a kiss. That is what I remember most.

Doulas and Dying

I am a doula. I am also a hospital chaplain. In holding space for birthing and dying, I’ve come to see one thing clearly. Standing with an open heart in the presence of birth is very much like standing with an open heart in the presence of death.

The word “doula” translates from Greek to mean “woman servant.” Today, doulas are known best for accompanying laboring and/or postpartum women. Doulas offer emotional, mental, spiritual and physical support during the transition of opening to new life. According to a 2013 nationwide survey conducted by Listening to Mothers, around 6 percent of expectant couples in America hire a birth doula. This number is small, but it’s growing. In 2006, only 3 percent of birthing women had doula support.

The vast majority of American women give birth in a hospital. Given this, the compassionate and consistent presence of a doula offers a healing tonic in an impersonal and medicalized obstetrical setting. Doulas focus solely on providing comfort measures, based on best practices, to ease the pain of labor and steady the heart and mind of a birthing woman. As a doula, I offer support for hours on end. I do my best to mirror back to a woman her courage, beauty and strength. Doulas believe in the power of birth and regard the process of birth as sacred.

What happens when we take the doula model described above and apply it to end-of-life care? What if we doula the dying?

Like with birth, the majority of Americans die in a hospital. While the majority of us wish to die at home, according to the National Center for Health Statistics, only 27 percent of Americans do. Most of us are born and die surrounded by medical professionals and beeping machines. Ideally, the technology associated with important medical advancements doesn’t eclipse the perennial needs of the human heart. Women birth best when they feel safe, are supported, and their bodies are allowed to open with organic wisdom. In the same way, the dying are best comforted with human touch, love, story and song.

In 2003, Henry Fersko-Weiss, a licensed clinical social worker, created the first end-of-life doula program in the U.S. He saw that there was “a gap” that hospice and medical professionals couldn’t fill when it came to supporting the dying and the bereaved. He trained with Debra Pascali-Bonaro, creator and director of Orgasmic Birth and chair of the International MotherBaby Childbirth Organization. Fersko-Weiss transferred knowledge gained about birth doula work to caring for the dying. As president of the International End of Life Doula Association (INELDA), he trains hundreds of individuals, drawing upon his studies of the intersectionality of birth and death work. Today, a small but growing number of organizations wisely build upon the doula model and offer training to support the dying and bereaved.

Fersko-Weiss is unique. Few end-of-life care professionals are trained in birth work. Few birth workers are trained in caring for the dying. Yet, uncanny similarities in best practices exist across these professions. At the October 2014 Midwives Alliance of North America annual conference, I spoke about the overlapping skill set taught in both my training as birth doula and hospital chaplain.There is much to be gained from studying what it means to hold space for both birth and death.

Holding Space

“That sure looks like my brother Darcey,” my grandpa said a few days before he died. His eyes gazed across his room. Then, he added, “Hi Mom. Will you stay close to me today?”

Will you stay close to me today?

When the veil between our visual world and the wonders beyond the physical senses thins, we seek out the hands of loved ones. Whether a mother holds these hands as she bears down to push a beloved child into our world, or whether an elderly woman holds the hands of her children as she breathes her last breath — we reach for each other. We do.

Wisdom and insight are born when we stay close to the birthing and dying. Wounds from the past can be healed. Forgiveness and perspective dawn. Our culture is currently fragmented from much of this wisdom. The training of doulas represents a healing shift. By holding compassionate and nonjudgmental space, doulas support families as they make room for the generations to enter and exit this world. As we attend to birth and death, we touch upon a great mystery and deeply benefit from being starkly reminded of our own mortality.

During my grandfather’s final days, his grandchildren and great-grandchildren came to his bedside. While he received quality and attentive hospice support, it was the consistent and compassionate care of his seven children that mattered most. In particular, my Aunt Colleen’s remarkable devotion to her father made it possible for him to live out his final years and eventually take his final breath in the comfort of his own home. She was his doula.

While the birth/postpartum doula movement makes important inroads in our maternity care system, great commitment and insight are needed to bring doula care to the dying. The elderly are easily disregarded in a culture that worships youthfulness, independence and productivity. Like infants, the dying remind us of our fragility, our dependency and our need for each other. When we sequester either birth or death, we lose touch with the truth of our interdependence, the nesting of generations, and what Buddhist teacher Thich Nhat Hanh calls our “interbeing.”

‘Just one step at a time’

As I work to train death doulas, hold space for the birthing and meditate on the mysteries that connect the threshold points of life, I remember my grandfather’s words: “Just one step at a time.” Yes. Just one birth, one death, one step at a time.

Slowly, steadily, the doula movement brings needed healing to how we perceive and experience both birth and death. Holding compassionate presence in our most fragile moments reminds us of what matters most. Certainly, it’s not what we possess. Even the location of birth or death is secondary. It’s the presence of love and the gentleness we bring to our mortal journey that matter most.

The last time I saw my grandfather, he blew me a kiss. I hold it close to my cheek. It inspires me to do this work.

Complete Article HERE!

Inmates Help Other Prisoners Face Death in Hospice Program

By Andrew Welsh-huggins

Inmate Scott Abram sings to a fellow inmate who is dying and is spending his last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. (AP Photo/Andrew Welsh-Huggins)
Inmate Scott Abram sings to a fellow inmate who is dying and is spending his last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. (AP Photo/Andrew Welsh-Huggins)

As late-morning sun streams through narrow prison windows, convicted killer Scott Abram stands beside a fellow inmate, speaks quietly to him and starts singing “Amazing Grace.” The prisoner appears to smile, but it’s difficult to gauge his response. He is dying.

He passes away two days later in early September.

Abram is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. Behind bars since the early 1990s for murder, he has gotten used to spending time with male prison friends as they die in rooms 205 or 206 on the second floor of the state’s prison for chronically ill inmates.

“We’re all human, and we make mistakes,” said Abram, sentenced to 15 years to life. “There are some that make bigger mistakes, like me. I make a lot of mistakes each day.”

Abram, 48, is a Stephen Minister, a type of lay counselor common in churches around the country but rarer inside prison walls. He is one of 15 male and female inmates trained in the program at Franklin Medical Center, a small prison just south of downtown Columbus that houses some of the state’s sickest inmates, many of whom die there.

Abram’s hospice work is just part of his Stephen Minister counseling. He and others also work with troubled inmates, perhaps helping them write a letter or make a call.

In Ohio and nationally, the inmate population is graying. Ohio had 8,558 inmates over 50 this year, nearly double the number in 2001. Other states, including Louisiana, Iowa and California, have similar prison programs.

Prisoner Sheila Belknap says her participation also makes her think about her own mistakes. Belknap, 42, plans to continue hospice work after she is released next year from a four-year term for theft charges. She calls her work with the dying a privilege.

A prison official points out a handmade quilt featuring the names of inmates who have died in prison hospice at the Franklin Medical Center, on Friday, Sept. 11, 2015 in Columbus, Ohio. Inmates trained in a counseling program called Stephen Ministries help fellow prisoners in their last days. (AP Photo/Andrew Welsh-Huggins)
A prison official points out a handmade quilt featuring the names of inmates who have died in prison hospice at the Franklin Medical Center, on Friday, Sept. 11, 2015 in Columbus, Ohio. Inmates trained in a counseling program called Stephen Ministries help fellow prisoners in their last days. (AP Photo/Andrew Welsh-Huggins)

“It’s just the satisfaction I get just from being there at the time of need,” she said. “No one wants to pass alone.”

Nos. 205 and 206 — there is also a room in another unit for female patients — resemble ordinary hospital rooms. Hanging wall quilts made by volunteers soften the institutional feel. Abram and Belknap are often joined by members of a Columbus choir that sings to hospice patients around central Ohio.

The Department of Rehabilitation and Correction hopes to expand the number of Stephen Ministers at other prisons, though hospice care would remain in the Columbus facility.

On average, an Ohio inmate dies of natural causes every three and a half days, not unexpected with a statewide prisoner population of 50,000, the size of a small city.

The national Stephen Ministry office in St. Louis is unaware of other state prisons with inmates trained in their counseling program.

Louisiana began an inmate hospice program in 1997 at the state penitentiary in Angola and developed a 40-hour training program for offenders, who volunteer for four-hour shifts with dying prisoners. California says it established the nation’s first inmate hospice at the California Medical Facility in Vacaville in 1993.

Inmate Scott Abram, holding a training dog, Ziva,  talks about his work counseling fellow inmates including some who are dying and spending their last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, also trains puppies that may end up as pilot dogs.  (AP Photo/Andrew Welsh-Huggins)
Inmate Scott Abram, holding a training dog, Ziva, talks about his work counseling fellow inmates including some who are dying and spending their last days in a prison hospice program, on Friday, Sept. 11, 2015 in Columbus, Ohio. Abram, serving 15 years to life for murder, also trains puppies that may end up as pilot dogs. (AP Photo/Andrew Welsh-Huggins)

The program at the Iowa State Penitentiary in Fort Madison, Iowa, was the subject of “Prison Terminal: The Last Days of Private Jack Hall,” a documentary by filmmaker Edgar Barens that received a 2014 Academy Award nomination.

“It not only helps the prisoner who’s dying of a terminal illness, but it’s so redemptive for prisoners who go through the process of becoming hospice workers,” said Barens, a visiting media specialist at the University of Illinois at Chicago. “It’s tenfold payback when a prison does this.”

Complete Article HERE!

California Governor Signs Right-to-Die Bill

By Josh Sanburn

California becomes the fifth state to allow the controversial practice

California Gov. Jerry Brown signed legislation Monday allowing doctors to prescribe life-ending medication to dying patients, making the state the fifth to legalize the practice and the first since the death of Brittany Maynard, whose decision to leave the state to end her life last year lent new urgency to the right-to-die movement.

Brown, a Catholic who at one point considered joining the priesthood, said in a statement that the religious objections to the bill were not enough to convince him to veto it.

“In the end, I was left to reflect on what I would want in the face of my own death,” Brown said in a statement explaining his decision. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill.”

Right-to-die supporters have been working to legalize the practice in California for almost two decades. The movement gained significant momentum last year when Brittany Maynard, a 29-year-old newlywed, was diagnosed with terminal brain cancer and left California for Oregon to take advantage of the state’s Death With Dignity law, which went into effect in 1997. Since Maynard’s death, half of all U.S. states have introduced aid-in-dying legislation.

“This is the biggest victory for the death-with-dignity movement since Oregon passed the nation’s first law two decades ago,” said Barbara Coombs Lee, president of Compassion & Choices, a right-to-die advocacy group, in a statement.

Polls showed that three-fourths of Californians supported the measure, but legislators routinely ran into opposition from disability rights advocates who say the practice can open the door to abuses of the elderly and disabled, as well as the Catholic Church, which says only God should decide when people should die.

The law allows doctors to prescribe life-ending medication to patients who have been given six months or less to live. It requires two doctors to consent to the prescription as well as written requests from the patient for the medication. California joins Oregon, Washington, Vermont and Montana, which also allow the practice.

Complete Article HERE!

I’m not as brave as my father, who died in misery

tony lopez
When Steve Lopez’s father, Tony, died he was so ill he couldn’t care for himself and death was a release.

By Steve Lopez

 

Dear Gov. Brown:

Three years ago, my father died in a fairly typical manner. His heart and his body had given out, he could barely move, he couldn’t feed himself and he was in diapers.

He was in a bit of pain, but the physical suffering was nothing compared to the emotional and psychological side of things. His life was gone and there was no joy in a day. He had no privacy and he hated having to be cared for as he lay in bed helplessly, a witness to his own lingering death, which finally arrived as a friend might, delivering the gift of mercy.

Maybe I’m not as brave as my father, but I knew then that I do not want to die that way and wouldn’t want my loved ones to experience the misery of watching me slowly dissolve.

In some circumstances, death may be the best remaining friend and it is reasonable and moral to accelerate the dying process.– Dan Maguire, professor, Marquette University

So what will I do? I don’t know. I wouldn’t be one to put a gun to my head, as some do. Maybe I’d stop eating and drinking water, but that can be a pretty miserable way to go too.

Gov. Brown, I don’t know if you read about this in my column, but I died once. Just after a knee operation, I went into cardiac arrest and flat-lined. That wouldn’t be a bad way to go, actually. No long, drawn-out affair. No messy stuff. But I was resuscitated, and I’m alive and well for the time being, and I’m asking you to give dying Californians the right to depart on their own terms.

No one seems to know what you will do with the End of Life Option Act that’s in your hands and would give us the same freedom people have in Oregon, Washington and elsewhere.

I know that our democracy is based on a separation of church and state, and that leaders such as you try not to let the tenets of their faith assert undue influence on secular decisions. I know too, however, that our values are usually set early and that religious beliefs are often core to who we are.

So it seems reasonable to note that the Catholic Church opposes what critics call assisted suicide and supporters call aid in dying, yet polls suggest most Catholics — as well as most Californians — want the option of going through a series of steps to get a life-ending prescription from a physician.

I know, governor, that you got a little farther than I did in the Catholic Church. You were a seminarian and I topped out at altar boy.

I don’t know if you still identify as a Catholic, but to me, any religion is about a search for meaning and we all know you’re a thoughtful — even spiritual — man who reflects, quotes Scripture and works from a set of basic moral principles.

So I wanted to share some conversations I’ve had with religious people who came to support aid in dying in the context of their experience and training.

“As a Christian I believe God is love,” the Rev. Ignacio Castuera once told me. “…And the God of love would not want any of God’s creatures to suffer undignified situations, especially at the end of life.”

Castuera grew up Catholic and is now a United Methodist Minister in Pomona. He told me about his ministry in West Hollywood during the AIDS epidemic, and he spoke of the honor of being with those who found a way to purchase life-ending medications and face death bravely with loved ones present.

“Death,” Castuera said, “is not the final stage for humans.” It is, in his mind, a deliverance to God.

The Rev. Sergio Camacho, a Methodist minister in Montclair, shares that view.

“Over the years, I’ve seen so many people dying, from brain tumors and other diseases,” he said. “It’s unbelievable how they suffer.… Before they go, they curse their families, they curse themselves, they curse God. It’s horrible, and God doesn’t want that. He wants us to go in peace. We need to think about this with merciful hearts.”

Dr. Robert Olvera, a Catholic physician and former altar boy who grew up in East Los Angeles, has supported aid in dying since watching his daughter die, at 24, from the leukemia she lived with for 17 years. She was blinded by her disease, he said, painkillers offered no relief and she suffered greatly.

“She was basically living in a black hole,” he said. “She had no quality of life.”

She was wasting away, her face was sunken, she did not want to be seen by anyone and she was in that state for the final three months of a life that ended last year.

“She begged me to give her some sleeping pills,” said Olvera, who couldn’t answer that request, knowing he could be criminally charged and lose his license to practice medicine.

Doctors can and do offer palliative sedation, but Olvera believes they should also have the right to grant a terminal patient’s wish to die at the time of their choosing, provided they are of sound mind and have satisfied the safeguards against abuse or coercion that are written into the end-of-life legislation.

I asked Olvera how he would respond to the argument that the timing of death is not something patients and doctors should decide; that should be left in God’s hands.

Doctors, he said, can unplug ventilators and they can answer a patient’s wish to be taken off dialysis. They can recognize that modern medicine has advanced to the point where people can be kept alive almost indefinitely, but all of us must ask whether, in some cases, we are extending life or prolonging death.

As both a physician and a Catholic, Olvera said, he believes no one should have to experience what his daughter did.

I understand that your education was Jesuit, Gov. Brown.

Well, Dan Maguire studied in Rome, became a Jesuit priest and now teaches moral theology at Marquette University, a Jesuit school. Here’s what he told me:

“For almost 50 years a number of Catholic theologians have taught that for the terminally ill, ending life may, at times, be the best that life offers. In some circumstances, death may be the best remaining friend and it is reasonable and moral to accelerate the dying process.”

According to Scripture, Maguire told me, we are made in the image and likeness of God, and it is our God-given right to decide for ourselves on matters such as aid in dying.

“Thomas Aquinas says with great wisdom that human actions are good or bad depending on the circumstances,” Maguire said. “In certain cases, you could say that life is good, and always to be served as best you can, but there are times when the ending of life is the best that life offers, and moral beings can make that decision for themselves…. That’s what human freedom means.”

It’s true, Gov. Brown, that some fear the life-ending option will be abused, and that those who are disabled or in a state of depression will choose inappropriately or be manipulated by relatives who stand to benefit financially.

It’s true, as well, that we need to be mindful of the potentially dangerous intersection of end-of-life options and cost-cutting by health insurance companies that have a financial disincentive in costly end-of-life procedures going on for long.

But I believe the legislation before you offers safeguards against abuses.

I don’t know if my father — who refused a feeding tube before his life came to a close — would have taken advantage of the End of Life Option Act, had it been available at the time.

I’m certain many people — probably most people — would want no part of it. That’s their choice and they should be entitled to the finest palliative care.

But I know that since writing about his death, I have heard from hundreds of Californians who would take a small measure of comfort in knowing that if they so choose, they can avoid physical or emotional suffering as the inevitable end nears. They believe that, as Dan Maguire put it, there comes a time when death is a friend.

I stand with them.

Complete Article HERE!

Explaining Withholding Treatment, Withdrawing Treatment, and Palliative Sedation

By: Romayne Gallagher MD, CCFP

Three terms that may arise in end-of-life care discussions are ‘withholding treatment’, ‘withdrawing treatment’ and ‘palliative sedation’. They are often misunderstood and sometimes confused with physician-assisted suicide or euthanasia.  Understanding these terms can assist in decision-making and ensuring quality of life.EndOfLifeCareSOS024HIRESsmall

Palliative care is about achieving the best quality of life until the end of life.  Each person’s situation, experience of illness, goals of care and approach to care are unique. Many factors influence the decision to withhold treatment, withdraw treatment or make use of palliative sedation. Each requires discussion and agreement between the patient and health care providers. If patients are not able to participate in these discussions, family members or substitute decision-makers are involved on their behalf.

Withholding treatment and withdrawing treatment

Traditionally, medicine has been focused on extending life. However as death approaches, extending life may not be in the best interests of the patient. A number of treatments and interventions can artificially extend life at end of life: certain medications, artificial nutrition, treatments such as dialysis, transfusions, radiation, and ventilation for breathing. It is important that patients and families understand the intent and possible risks or benefits of the care they are receiving. In Canada, people with advanced illness, or their substitute decision-makers, who are properly informed and able to make health care decisions can stop or decline treatment, even if that treatment might prolong life. While withholding treatment and withdrawing treatment refer to actions taken by health care providers, the actual decision to decline or discontinue treatment rests with the patient or the patient’s family or substitute decision-maker. Declining or discontinuing treatments that artificially extend life doesn’t mean that symptom control such as pain management and emotional support stop. Care and treatment focused on maintaining comfort continue, allowing the person to die naturally from the disease.

The first three cases below are examples of withdrawing and withholding treatment in the case of advanced disease. The cause of death in each case is the underlying illness. The intention of the plan for care is to treat symptoms and keep the patient as comfortable as possible but not prolong the natural dying process.

Case 1

Withdrawing treatment: Linda wants to stop dialysis

Linda has had diabetes for many years and has developed kidney failure. She has been on dialysis to keep her kidneys functioning. Because of dialysis, she has lived long enough to see the birth of her great grandchild eight months ago. But Linda is now growing weaker; she can do less for herself and always feels tired, especially on her dialysis day. It is getting more difficult for her to get back and forth to the dialysis clinic, and she now thinks dialysis is only prolonging her dying. After discussing her thoughts and feelings with her adult children and health care team, Linda decides to stop the dialysis treatment. The health care team controls Linda’s symptoms caused by kidney failure and she dies two weeks later with her family at her side.

Case 2

Withdrawing treatment: Jorge wants to stop transfusions

For three years, Jorge has had leukemia, a cancer of his blood. The cancer has filled his bone marrow to the point that he can no longer make enough red blood cells to live without transfusions. Similarly, Jorge can no longer make enough white blood cells, so he has had a number of infections. At first, his body could fight off these infections with the help of antibiotics.  Then he would feel better and have enough energy to enjoy his photography hobby and his life with his partner. But after the last few infections, Jorge’s energy has not returned enough for him to go out and take photographs. He spends most of his day sleeping and has found it harder to go to the hospital for blood transfusions. His partner and friends are willing to help him with everything. But he is struggling with feeling so dependent.

Jorge talks with his health care team about how his life is now. “I can’t take this anymore,” he says. His team reminds him that he can always decide not to treat another infection when it comes along. He has the right to say no to antibiotics since they no longer help him recover from the infections. He can also stop his transfusions if they no longer help.  He has the right to decide to stop all treatments and let nature take its course. Jorge decides to stop the transfusions and to not receive antibiotics if he gets another infection.  Jorge’s partner supports his decision. She has noticed changes in Jorge and that the treatments are no longer making him feel better.  Two weeks later, Jorge gets an infection. He experiences some shortness of breath but his team controls it with small doses of pain medication. He dies peacefully several days later.

Case 3

Withholding treatment: Marjorie’s family declines life-prolonging treatments

Marjorie is a frail older woman living alone in her own home. She has always told her nephew and niece that if she can no longer live there and manage her own affairs, she doesn’t want to live long. “Don’t put me on machines if I am going to end up being spoon fed,” she has said. One day, in terrible pain from a sudden, dreadful headache, she calls her nephew. Her speech is slurred and he can hardly understand her. By the time he gets to her home, she is barely able to respond to him. When the ambulance comes, the paramedics put a tube down her throat to help her breathe. At the hospital, a scan shows Marjorie has had a massive stroke that she is unlikely to recover from. The emergency doctor explains that if she were to have any chance of surviving, the health care team would need to maintain the breathing tube and connect their aunt to a breathing machine. She would also need drugs to reduce the swelling in her brain. It is expected that even if she does wake up, Marjorie will have physical and maybe cognitive impairments, will not be able to live alone, and will need help with all of her care.

Marjorie’s nephew is her next-of-kin and her substitute decision-maker. He knows that she would not want to live if she were unable to be independent in her own home. He asks if there are any other options. The emergency doctor tells him that since she has almost no chance of returning to her former life, Marjorie’s nephew could decide to remove the breathing tube and not to start the medication to reduce the swelling in her brain. The health care team would focus on treating any pain or other symptoms that she might have and allow her to die a natural death. Since that seems most in keeping with Marjorie‘s wishes, her nephew agrees. He and her niece stay with her until she dies 12 hours later.

Case 4

Withholding treatment: Mabel’s family decides against a feeding tube

Mabel is an 88-year-old woman who has lived with dementia for three years. In recent months she has become weaker, unable to walk, spends most of her day in bed and is having increasing difficulty swallowing food or fluids without coughing. Her daughter worries that she will “starve to death”.  The doctor and staff share information with her daughter about the typical course of dementia, and how interest and intake of food and fluids diminishes.  After talking with the staff and reading articles on this topic, the daughter understands the natural progression of dementia and that her mother will not experience hunger. She agrees to focus on good end-of-life care that includes sips of fluids or careful hand feeding if her Mom is awake and able to safely swallow, or good mouth care to prevent dryness.

What About Food And Fluids?

end of life 4Towards the end of a progressive, life-limiting illness, people reach a point where they can no longer eat or drink. They may be too weak and unable to swallow, or always sleeping. When people become too weak to swallow, they may cough or choke on what they are trying to eat or drink. Providing food and fluids at this point usually requires a feeding tube. These tubes can be placed through the nose into the stomach, or they can be surgically placed directly into the stomach through a hole in the wall of the abdomen. At such an advanced point in an illness, our body systems are shutting down and our bodies are not able to use the calories in food. People understandably may be concerned that if someone is not being fed, they are being ‘starved to death’. However in these situations, it is the illness that determines the point where food can no longer be taken in; even if it could be, the body would not be able to use it to become stronger or to live longer. Hunger tends to be absent, and the sensation of thirst is typically related to dryness of the mouth, which can be addressed with good mouth care.

Feeding with the help of medical devices – including feeding tubes – is a medical procedure, similar to providing antibiotics or blood transfusions through an intravenous  (“IV”). Therefore, when an advanced illness progresses to the point that someone can no longer eat or drink, the person or substitute decision-maker can indicate that a feeding tube is not wanted as it would only artificially prolong the final phase of illness.

This is a controversial and emotional issue as providing food and fluids feels like a basic way people nurture and care for each other. Nonetheless, patients and substitute decision-makers have the right to decline medical or surgical procedures such as inserting feeding tubes and other medical devices.

Palliative sedation

Palliative sedation involves giving medications to make a patient less aware, providing comfort that cannot be achieved What Really Matters at the End of Life?otherwise. A legal and ethical practice in Canada, its goal is not to cause or hasten death but to keep the person comfortable until death. The decision to begin palliative sedation is made after an in-depth conversation between the patient (if able) or the family or substitute decision-maker, and the physician. Palliative sedation is considered a last resort in the last days of life, when all possible treatments have failed to relieve severe and unbearable symptoms such as pain, shortness of breath, or agitation from confusion.

While the person is sedated, the health care team monitors and reviews his or her condition and comfort and the family’s reaction to the treatment. The medications and dosages can be adjusted, resulting in a range from a slight calming effect to full sleep. The sedation can also be reversed, so the person is not completely asleep during the dying process. Research has shown that palliative sedation does not shorten life. People die from their disease – not from sedatives.

The two cases below are examples of how palliative sedation eases suffering and keeps a person comfortable until he or she dies from disease.

Case 5

Palliative sedation: Jim is confused, agitated and frightened

Jim has severe liver failure from hepatitis C. He can’t have a liver transplant because of other medical problems. His liver is not cleaning his blood as it should and toxins are building up in his blood. The toxins are causing confusion and in the end will cause death in less than a week. Until two days ago, Jim was able to understand and agree to his treatment. Now, he tries to get out of bed during the night, doesn’t recognize his family, and is agitated and frightened. Jim’s family is distressed.

Jim’s health care team does some tests to see what is causing his confusion and agitation. The team finds that his liver function is extremely poor, and there are no other causes for his distress they can correct. This type of confusion is called delirium. Since the medications usually used to control mild to moderate delirium are not effective, the health care team and Jim’s family meet to discuss further treatment. The health care team recommends sedation to allow Jim to rest in bed and feel calm. The family agrees and the medication is given. Jim receives enough medication to help him lie peacefully in bed, and sleep comfortably. On the third day, the team reduces the medication, but Jim again becomes restless and agitated, so the medication is increased to the point where he is resting comfortably. Jim dies comfortably from his illness on the fourth day with his family at his bedside.

See also: Confusion

Case 6

Palliative sedation: Roberto wants to see his children one last time

Roberto has cancer which has spread to his liver and lungs. A large tumour in his pelvis where the cancer recurred causes him severe pain. He has received chemotherapy and radiation therapy, and is receiving multiple pain medications. Until two weeks ago, Roberto’s pain was under control. Then he came to the hospital seeking relief. Roberto is becoming weaker every day. He is likely to die in the next week because of the cancer in his liver and lungs. He desperately wants to live until his ex-wife brings his two young children to visit; however they no longer live in the same city. Although the health care team is controlling his pain as much as possible, Roberto is distressed by the pain and the waiting.
The team offers Roberto some sedation to make him unaware of his pain and reduce his distress. They promise they will reverse the sedation when his children arrive. Roberto agrees and the team starts the medication, increasing the dosage until Roberto is able to sleep. Roberto sleeps for a day and a half. When the team knows Roberto’s children are about to visit, they stop the sedation, and he is able to see them for the last time. After their visit, Roberto chooses to be sedated because of his pain. He dies two days later from his cancer.

See also: Pain

Patients and families living with advanced illness will be faced with many decisions related to their care.  It is important that they be able to discuss the risks and benefits of possible treatments and interventions with their healthcare team so that they can make informed decisions that are consistent with their goals of care

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