California’s controversial assisted-death bill divides doctors

By Alexei

When the California Medical Association removed its long-standing objection to assisted death in May, it seemed to clear a legislative path for Senate Bill 128, which would allow physicians to provide lethal drugs to patients with less than six months to live.

But the powerful doctors group’s neutral position has not quelled the controversy, either among lawmakers or in the medical community. After passing the state Senate last month, SB 128 could meet its end during a hearing Tuesday in the Assembly Health Committee, where it stalled two weeks ago over growing objections from Latino Democrats.

Nearly 18 years after Oregon enacted the country’s first assisted-death law, doctors also remain strongly divided over the ethics of the policy. Does it provide patients with a personal choice to end their suffering, or violate a physician’s oath to do no harm? The answer can be deeply personal.

Pro: ‘We treat our pets better than we treat our loved ones’

Michael Amster- Assisted death is 'compassionate act'

Dr. Michael Amster, a pain-management specialist in Fairfield, deals with dying patients every day.

But he was unfamiliar with assisted death before last year, when a college friend who lived in Oregon came to the end of a debilitating two-year battle with gynecological cancer. As his friend considered taking advantage of the state’s law, Amster said she found a “peace of mind knowing that she could end her suffering if it got too unbearable.”

“She shared that, because of that, she was able to live her life more fully in the present moment and not worry about the future and the unknowns,” Amster said. Though his friend died too quickly to use Oregon’s law, “watching what she went through woke me up to understanding the value of having this option available in the end-of-life process.”

Amster has since become an advocate for assisted death in California, urging lawmakers to pass SB 128. He sees it as an issue of personal choice and autonomy in health care, rather than as physicians assisting patients to commit suicide, as some opponents have framed it.

“All it does is hasten a natural process,” he said.

Opponents have pointed to existing palliative care and pain management options as better ways to help dying patients in their final days. But Amster said available medications don’t work for everyone or can provide a poor quality of life, leaving people delirious and sedated.

He draws a contrast between sick animals, who are put down when their suffering becomes too great, and people, who are left to ride out the natural course of their dying process until their bodies finally shut down.

“We treat our pets better than we treat our loved ones, is what it comes down to,” he said. “There needs to be another option for people that are really stuck and suffering greatly.”

If SB 128 becomes law, Amster would be open to prescribing the medication. He said he already has those conversations with patients who come to him seeking help in dying, but he has to be “clear with them the boundaries” about what is legal.

That hit home last year as another friend of Amster’s in Davis was dying of ovarian cancer. She explored the possibility of moving to Oregon, but didn’t have enough time left to establish residency, so she began to talk about ending her own life in a “ritual” surrounded by loved ones.

“I watched my friend and her husband horrified and scared about, you know, if she chose to take all of her hospice medication and overdose and die, like, could he be thrown in jail if he knew about this?” Amster said.

When his friend began consulting Amster about how she might overdose, he said he had to make the difficult decision to distance himself.

“As a friend and someone who loved her, I wanted to help her end her suffering,” he said. “But ethically and with my license and what I felt what was the right thing, there was nothing I could do to help her.”

Amster hopes that legalizing assisted death in California will bring those conversations about dying into the open, and get people thinking about their own wishes.

“What are our values? What do we consider humane treatment for someone who’s at the end of their life?” he said. “Is that really suicide, or is that compassion?”

Con: Focus on improving hospice care

Dr. Daniel Mirda

Dr. Daniel Mirda, a hematology and oncology specialist in Napa, tries to take the fear out of cancer treatment.

“I can’t tell you how many times a person comes to me and they’re very afraid of their illness and they’re facing a lot of possible disasters,” he said. “Yet oftentimes having a plan simplifies their life, helps them deal with it and better understand what to do.”

He takes the same approach with SB 128, which he has testified against as president of the Association of Northern California Oncologists.

While Mirda understands why someone facing a lethal and debilitating illness might want to “head it off at the pass,” he sees his role as providing patients with the best options possible for living their “most productive life” going forward.

“I don’t think in the same sitting I can tell you how to fight your cancer and this is how you end the fight,” he said.

Mirda shares some of the ethical concerns that other opponents of assisted death have expressed: Would the socioeconomically challenged be more likely to choose this option because medical therapies are too expensive? How much sway would a patient’s family have over their decision? Would it be overused?

He also objects to cutting short the process of dying, which he believes can be an important time for patients and their families.

“When you first find out you have an illness, the last thing you want to do is kill yourself,” Mirda said. Then as time goes on and people deal with the consequences, they can assess their quality of life and decide whether to keep seeking treatment.

“This idea of getting ready for death is sometimes as valuable to people as doing therapy to avoid it,” he said. “How are you going to spend that time that you have left?”

For loved ones, there’s a chance to say goodbye.

Mirda’s mother-in-law died from acute leukemia last month. At first, he said, the family wanted her to live longer. But as she developed various complications from the cancer, everyone was integrated into her struggle and eventually understood that she could no longer keep fighting it.

He compares it to his father’s sudden death many years ago, which left him in the lurch. When his mother-in-law finally died, the family was “kind of at peace.”

“You have done everything possible to help this individual,” he said. “There are no regrets at all.”

Mirda would rather that California focus on improving hospice care, which he regards as a “totally supportive environment” for both dying patients and those they are leaving behind.

“That to me is really where the real effort would have to be exerted – respecting the individual, but then respecting who this is going to affect that moves on,” he said.

If lawmakers pass SB 128, however, Mirda said he would at least make sure that his patients are informed of their options and free to choose for themselves. Whether he could prescribe the medication himself may depend on his relationship with the patient who asks.

“Could I do that if faced with it? We’ll have to see,” he said. “It would almost have to be as individual as the decision itself.”

Complete Article HERE!

How to Talk About Dying


I was 25 when I flew home for my father’s last birthday. His cancer had returned and he would die three months later at the age of 57. What I remember most about that weekend was the large rectangular gift box he opened. My mother had bought him a new suitcase.

I don’t know if that suitcase qualifies my family for the Denial Hall of Fame. There are so many contenders for that honor. But I’ve carried the psychic baggage over the years. I have never forgotten that image and how we lost a chance to say goodbye. I still wonder if my father was lonely in the silence that surrounded our inability to talk about what we all knew.

Decades later my mother began a long slow decline. By then, I was a newspaper columnist, a job that I often described as “telling people what you think.” I was professionally outspoken. But little had changed since my father’s death.

Yes, my mother and I talked about everything — but we didn’t talk about how she wanted to live toward the end. The closest we ever came to discussing her wishes was when she would see someone in dire straits and say, “If I’m ever like that, pull the plug.” But most of the time there is no plug to pull.

Gradually and painfully, my mother lost what the doctors call “executive function,” as if she were a C.E.O. fumbling with Excel spreadsheets, not a 92-year-old who couldn’t turn on the television or make a phone call. Eventually, she couldn’t decide what she wanted for lunch, let alone for medical care.

In some recess of my mind, I still assumed that death came in the way we used to think of as “natural.” I thought that doctors were the ones who would tell us what needed to be done. I was strangely unprepared, blindsided by the cascading number of decisions that fell to me in her last years.

I had to say no to one procedure and yes to another, no to the bone marrow test, yes and yes again to antibiotics. How often I wished I could hear her voice in my ear telling me what she wanted. And what she didn’t want.

When my mother died from heart failure and dementia, I began to talk with others. It was extraordinary. Everyone seemed to have a piercing memory of a good death or a hard death. Some of these stories had been kept below the surface for decades, and yet were as deep and vivid as if they’d just happened.

Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.

The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end.

So, a small group of us — each with his or her own story — started the Conversation Project, a nonprofit, out of the belief that surely we could make this easier. Our partners at the Institute for Healthcare Improvement gathered experts frustrated at the pace of change who believed that the health care system wouldn’t change until the culture changed. So we are trying to change the culture.

There is now, finally, a real momentum for improving end-of-life care. The signs range from the Institute of Medicine’s report, “Dying in America,” to the success of Atul Gawande’s book “Being Mortal.”

There is also a growing public awareness of the need to break through the reluctance that has kept us tongue-tied for so long. A survey we did last year showed that 90 percent of Americans now think it’s important to have the conversation. But the same survey showed something else: Only 30 percent of us have actually had these conversations. So the gap remains huge.

We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.

In our survey, the primary reason people gave for not talking to their loved ones was “It’s too soon.” But it’s always too soon … until it’s too late. Half of all elderly people in hospitals cannot make decisions for themselves at the end of life. Far too many health care providers are uncomfortable and untrained in these conversations.

From all the stories shared with us, we know that what people need most is help getting started. They need a travel guide to take the first steps down an unfamiliar and difficult road. So we created a Conversation Starter Kit, which deliberately avoids being a technical medical checklist for the dying in favor of a careful discussion guide for the living.

Our starter kit asks what matters to you, not what’s the matter with you. It asks what’s most important to you in the last phase of your life? Who do you want to make decisions for you? Where do you want to be? Do you worry that you won’t get enough care? Do you worry that you’ll get overly aggressive care?

About two-thirds of the nearly 300,000 people who have come to our website download the starter kit, which is free. We’ve been told repeatedly that conversations that had loomed as frightening and overwhelming repeatedly turned into the most intimate and rewarding moments.

Is it important to have the health care system ready to respect and record our wishes, to have health care providers become more comfortable beginning these talks? Of course. But the hard truth is that we have to begin ourselves — by thinking about our own values, by sharing them, by bringing our own beliefs into the center of the room when decisions will be made.

In my own adulthood, the culture of birth changed. It wasn’t doctors who first tossed out the stirrups and ushered in fathers and video cameras and “birthing rooms.” It was parents who said, birth is not just a medical experience, it’s a human experience. Now we are finally saying that dying, too, is not just a medical experience, it is also a deeply human experience.

Last winter we held a national dinner party to break bread and taboos, to eat comfort food and talk about dying. I shared the table with Nancy Frates, who is known for starting the A.L.S. ice bucket challenge to honor her son Pete. “Now I understand,” she told me. “The conversation is a gift to your family.”

When I helped found the Conversation Project, I thought we were doing this for people who were dying. I thought of my parents. I thought of “executive function” and “baggage.” What I have learned is that the conversation is also a legacy. This is the gift, maybe the last gift, we can give one another.

Complete Article HERE!

‘End of Life Option Act’ Offers Death with Dignity for Trans Man

California legislators and the Compassion and Choices coalition are pushing for a bill allowing terminally ill patients to shorten the inevitable dying process


Michael Saum

In 1996, on the cusp of the lifesaving three-drug HIV cocktail, Eric Roberts starred inIt’s My Party by director Randal Kleiser, one of the first films to feature a gay man who not only insists on dying with dignity but doing so with a festive, emotional flare.

Roberts’ character had been diagnosed with an aggressive disease that would rob him of his mental acuity months before he would actually die, so he wants a goodbye party while he can still recognize the ones he loves. The film was Kleiser’s tribute to his own ex-lover, who died of AIDS in 1992.

In the film Roberts had a brain disease, so he still looked young, fit and beautiful. Most gays with AIDS surrendered vanity early on as their once-worshipped bodies were ravaged by the wasting syndrome or the purple lesions of Kaposi’s Sarcoma. They were rendered helpless and unrecognizable to themselves, an agony sometimes worse than the unrelenting physical pain. Death was a welcome blessing, and many were quietly helped to that end by bereft loving friends, lovers and family, despite the pall of illegality.

It was in this context that efforts to legalize physician-assisted suicide in California were launched in 1992, 1995 and 1999. But the prospect of a dying person choosing a good death became highly politicized by the religious right with the Florida case of Terri Schiavo, where Gov. Jeb Bush sided with the family and ordered her life prolonged, despite the wishes of her husband who said his wife expressly said she wouldn’t want to be kept alive in a vegetative state.

Today there is another effort underway in the California Legislature to pass a well-crafted bill—modeled on the successful death-with-dignity bill in Oregon—that even won the support of conservative Democrat U.S. Sen. Dianne Feinstein and the California Medical Association, which ended its opposition after 28 years.  On June 4, the State Senate passed the End of Life Option Act, SB 128, by 23 to 14, buoyed by a poll last year showing that nearly two-thirds of Californians favor giving a terminally ill patient the option to die peacefully. Currently Washington, Montana, Vermont and New Mexico also have medical-aid-in-dying laws.


Co-authors Senate Majority Leader Bill Monning and Senate Majority Whip Lois Wolk, with support from the Compassion & Choices Coalitionintroduced SB 128 last January.  The bill has a “checklist” of safeguards to prohibit the possibility of abuse. Essentially the bill would allow a mentally competent, terminally ill adult (18 or over) the option of requesting (both orally and in writing) a doctor’s prescription for medication to shorten the inevitable dying process so they might die peacefully, without pain.

“I’m doing everything I can to extend my life. No one should have the right to extend my death,” out State Sen. Mark Leno  recalls one woman dying of lung cancer saying during a Senate hearing on the bill. Leno is a principal co-author of SB 128.

“I happen to be of the philosophical belief that government should not come between an individual and a decision he or she may make with a physician,” Leno says during a phone interview with Frontiers. “There is nothing more personal and of greater importance than our end-of-life choices. I don’t think government should be in the way. That’s what this bill does. It provides a choice for someone in a very specific situation.”

Leno knows something about this. He lost his partner Doug in 1990 and Doug’s younger brother in 1986. “Those of us of a certain age,” Leno says, “saw the tortured deaths of hundreds of friends” at a time when there was no hope of surviving. “So I’ve seen firsthand how cruel that can be.” And with aging parents and siblings approaching their last years, “it becomes a very real issue all over again.”

Leno says he found it “astounding” that a Republican colleague described his opposition to the bill by suggesting a terminally ill patient could drive over a cliff or shoot themselves in the temple instead. “The level of insensitivity is so extreme,” he says.

Michael Saum and Julia

Michael Saum, a 35-year-old transgender man who is dying from brain cancer (pictured in photo above with best friend Julia), wishes he had that option. Saum’s doctors think he will die in the next few months, before the bill reaches Gov. Jerry Brown’s desk.

“It’s not that I want to die; I don’t want to die,” Michael tells Frontiers. “I love life, but I don’t want to live like this.”

Saum was battling cancer for 14 years before going into remission—an 18-month respite during which he took the opportunity to become the man he always felt himself to be. His mother, who had been fine when then-Heidi came out as a lesbian, could not handle his transition. When he was diagnosed with Stage IV brain cancer that had spread throughout his body, he turned to his lesbian friends, most importantly his best friend Julia, whom he had once dated, to provide him refuge in her El Monte home and to take care of him. “It’s the kind of love I can’t even describe. She’s selfless,” he says.

Saum is currently at the strongest dose of painkiller allowed, but it’s not working. He has severe headaches, nausea, unregulated body temperature, short-term memory loss, unfiltered speech—“so many things go wrong” having big tumors in both the left and right frontal lobes.

“I’m in terrible pain every day, to the point that I’m crying nearly every day,” he says. “I’ve been told by my doctor that there is no chance for change, no miracle; no treatment is going to heal me.

“I think I’m going to pass before this bill is enacted,” Saum says, “but if it’s not there for me, I’m grateful I’m able to help others in my situation.”

Assemblymember Susan Eggman

Out Assemblymember Susan Eggman, Chair of the LGBT Legislative Caucus, is the lead principal co-author in the Assembly. A former hospice social worker who also lost friends in the ‘80s and ‘90s and cared for family members as they lay dying, she is uniquely positioned to understand the significance of SB 128.

“I come at this from a lot of different perspectives,” Eggman tells Frontiers. I believe—and I think polling shows—that Californians are ready for this.” Additionally, 17 years of research out of Oregon show that there is virtually no coercion or abuse.

“We know that oftentimes people don’t even go through with it. They just know that they have that option,” Eggman says. The bill is not for people who are depressed or seniors or disabled. “This is for somebody with a terminal illness, for which no cure is expected, and their end-of-life trajectory is within six months to a year.”

And, she notes, the End of Life Option Act is “for those who have had a certain degree of control in their life—this is something that is important to them.”

Perhaps more people than the dying and their loves ones are beginning to grasp the moral and ethical urgency of this bill. In a sharp contrast to the political and religious-based Schiavo controversy, a bipartisan poll conducted June 16-21 shows that nearly seven out of 10 Californians (69%) support SB 128, and that includes Catholics (60%), non-evangelical Protestants (65%) and evangelical Christians (57%).

Eggman is holding a hearing on the bill on July 7. The deadline to pass SB 128 in the Assembly is September 11.
Complete Article HERE!