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!

Life Is But A Dream – 10/19/15

What does “life is but a dream” mean?

Sometimes when something unbelievable happens, it’s so outrageous (usually in a good way) that it seems like you’re in a dream.

Life is what you make of it. So if you dare to dream, envision what you want it to be – it becomes your reality. It goes right along with the saying “You can be anything you want to be…”

In dreams anything is possible, impossible becomes possible. In life there are limitations with unseen forces that work along with our motives to confuse us more on the path to fulfillment. Life is but a dream – nothing is so easy as to dream it and make it happen right that moment without obstacles standing in way.

Before I Die: Why everyone’s talking

By 

Christine Corti knows how hard it can be to talk openly about death and dying. The 39-year-old graphic designer for Samaritan Healthcare & Hospice spends her work day surrounded by the discussion.

Her own mother scolds her when Corti says someone has “died.” Her parents are more conservative than she is, more private, more dignified, she explained.

Christine Corti
Christine Corti leads a discussion about end-of-life wishes and care with Samaritan Hospice employees.

“They didn’t grow up in the social media world where people are talking about what they ate,” said Corti, who also handles Samaritan’s social media. “You didn’t have intimate conversations about a lot of topics, including being sick and dying.”

But the discussion is more important now than ever.

Last year, Samaritan launched headlong into a project intended to break down those unspoken conversation barriers. It devised a campaign asking people to talk about their end-of-life care, using community events and games as conversation starters.

The work grew out of Samaritan’s own experience, as employees shepherded families making critical medical decisions for their loved ones, explained Joanne Rosen, who leads Samaritan’s initiative.

“Those decisions are heart-wrenching,” Rosen said. “We really believe that the best time to start having those conversations is early on. We suggest while we’re all healthy, not just when somebody is diagnosed.”

The need is clear.

According to a “Health Matters” poll conducted by the New Jersey Health Care Quality Institute and the Monmouth University Polling Institute, more than 54 percent of New Jersey residents have no legal documents expressing their wishes for end-of-life care. Another 38 percent have never talked about advanced care planning.

But people should make that conversation part of their routine health care, even when in their 20s, said Dr. Stephen Goldfine, Samaritan’s medical director.

“If you start having these conversations, it normalizes the conversation,” Goldfine said. Starting in 2016, physicians will be reimbursed for having that conversation with patients, which Goldfine called “a big step forward.”

Often, medical care is provided without knowing what the patients’ desires are, he explained. Decisions are often made when patients aren’t able to make them. That could mean a person’s life is extended through aggressive interventions, such as long periods spent on breathing machines, against their wishes.

“Just because we can do something, should we do it?” Goldfine asked. “For physicians, as we have more and more interventions, it becomes harder for us.”

Everyone needs to define his or her own quality of life, he explained. A self-defined “talker,” Goldfine said if he can no longer have a rational conversation with his loved ones, he doesn’t want aggressive care to extend his life — “I just want to be kept comfortable.”

Getting young people to talk about death isn’t as hard as one might think. That same “Health Matters” poll found 73 percent of respondents said they are comfortable with the idea of aging and death, and start thinking about it as early as age 30.

In some circles, it’s even earlier.

For the past nine years, Samaritan has helped Moorestown Friends School offer a semester-long course on hospice care. And though the class delves into difficult territory, it’s become a popular elective, explained Priscilla Taylor-Williams, a teacher who leads the religion department at the school.

“I think in some ways, it’s kind of a relief to be able to ask the real questions, and share some concerns,” Taylor-Williams said. “I think it helps that all of the adults who talk to them are comfortable. That’s the huge piece right there. … We are not afraid of this conversation.”

And it’s not like teens haven’t encountered death in their own lives. Indeed, the course was launched after the deaths of a teacher and a student. After taking the course, some students have used what they learned in their own families, Taylor-Williams said.

“I know kids talk about it,” Taylor-Williams said. “Most teens I know have lost someone by the time they’re in these high school years, or they’re watching someone go through some pretty serious illness in their families. I think it’s helpful to have a way to talk about it.”

Corti, the Samaritan graphic designer, thinks younger people are more open to a discussion about end-of-life care. She suggests making it a part of casual conversation, when out to dinner or in a car ride.

“Just put little droplets of those thoughts out there,” Corti said. “It just might help open that conversation for the next time.”

Learning to Die

By MARGOT MIFFLIN

My mother taught me many things, including, in the end, how to die.

Her death went well, I told the few friends who I knew would understand my meaning: She was not in pain, she was conscious until the day before she died, she was at home, my sister and I were with her. It was a peak experience, revelatory and meaningful — something I wouldn’t have traded for anything — except her life.

No one tells you how discreetly death can make its catch, or how languorously. It rolls in like a low wave: It’s moving, and it’s not; she’s there, afloat, and she’s not; it simultaneously sluices through her and tugs her in its tide for hours, until she’s silently dispelled by its force.

I understand, now, why death has so often been personified in art — it’s maddeningly anonymous. Sylvia Plath’s Death is two people: the one who never looks up, and the one who smiles and smokes. But her suitors are too sexy and menacing to represent the remote, impassive, mundane death I witnessed. Jacques Brel’s Death is a spinster, a princess and a witch — all impossible: the experience of death could never be so monumentally solitary with this crowd of enablers on the sidelines.

My mother hallucinated lightly in the week before she died, and her morphine visions assured me that her death — or at least what followed it — would be O.K. “I wish I were a tree,” she said one day, which seemed reasonable in light of both her love of forests and the nature of her illness, multiple myeloma, which was whittling her bones away. She wanted to be solid again. She wanted to stand up and be rooted. A few days later she said brightly, “My father’s waiting for me.” She was ready to go.

On the night she died, five or 10 minutes after she stopped breathing, I held her in my arms and she was still there. An hour later, she was not. But she hadn’t been taken. I’m certain she had left, and seeing her go gave me the courage to think that I could do this myself, without fear.

I practiced in a dream. I was running along the rooftops of Lower Manhattan when I hit a sheer drop of 20 or 30 stories, and began to fall. I knew I would die, so I gave myself a quick admonition. First: Relax. It’s a long way down, and you could have a hell of an experience before this ends if you don’t tense up and miss it. Second: Stay horizontal so you get a clean hit and don’t make a huge mess. Third: On the ground, before you die, explain that this was an accident, not a suicide. People who love you deserve to know.

I hit the ground and found myself running again — scrambling around trying to get back to a building where I’d left a newly purchased book I was desperate to retrieve. I’d died and gone to — a bookstore. Life went on.

A month after her death, my mother was still dying. When I went to her apartment to sort her mail and pack up her things, she was there — a little less each week, but still. She walked in and flopped down on the full length of the couch with one outstretched hand brushing the floor, a Kleenex in her sleeve, surveying the vast empire of magazines on her coffee table. She appeared in my dreams, allowing me to hug her for a preposterously long time, though we both knew she was dead. This is how I held on to her for a few years — when I played it right. One night in a dream, for example, I spoke to her at length by phone, but when I asked her where she was, she sounded irritable and hedged, and the dream dissolved. So I learned not to ask.

And now, four years have passed. A gap has widened between what happened before her death and what’s happened since, and she’s slipped into it. They’re all gone now: the ghost mother, reclining on the couch; the missing person, dissembling on the phone; and the absent presence lingering in the woods where her scattered ashes have settled into the underbrush, buried under seasons of snow and wildflowers. And yet it feels as if I just met this radical new mother who did the unthinkable — the renegade who journeyed deep into the wilds of a terminal illness, shape-shifted magically before my eyes, and took off. It was an artless, innocent betrayal, based on a misunderstanding: I had simply thought she would live forever.

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!

UK is the best place in the world to die, according to end-of-life care index

Integration of palliative care into NHS and strong hospice movement among reasons for UK ranking first in study of 80 countries

A nurse at a patient’s bedside
A nurse at a patient’s bedside

The UK is the best place in the world in which to die, according to a study comparing end-of-life care in 80 countries.

The integration of palliative care into the NHS, a strong hospice movement largely funded by the charitable sector, specialised staff and deep community engagement are among the reasons cited by the Economist Intelligence Unit(EIU).

The upper echelons of the index are dominated by wealthy European, Asia-Pacific and north American countries. Australia is second, New Zealand third and Ireland and Belgium complete the top five.

Annie Pannelay, of EIU healthcare, said: “A very strong marker in our index is the availability of specialised palliative care workers and this is where the UK scores particularly well. The UK has a long history of providing treatment in palliative care. The other super strong marker is the way that the countries do have a plan for palliative care. That means they are on the dynamic of measuring progress and improving.”

The US is ninth in the index. Taiwan is the highest Asian country, placing sixth, while India and China rank 67th and 71st respectively. Their performances were described as worrying in light of their huge populations, with China of particular concern given that “the impact of the one-child policy, often leaving individuals caring for two parents and four grandparents, will lead to even more demand for outside resources to provide support”.

Among the countries that fare well despite being less wealthy and having less well developed healthcare systems are Mongolia and Panama, 28th and 31st on the index respectively. Mongolia’s performance was attributed to an individual doctor who has driven an increase in palliative care.

Despite the UK’s top ranking, the study’s authors say it is “still not providing adequate services for every citizen”. They highlight an investigation by the parliamentary and health service ombudsman into complaints about end-of-life care, published in May, which raised issues including poor symptom control, poor communication and planning, failures to respond to the needs of the dying, inadequate out-of-hours services and delays in diagnosis and referrals for treatment.

Pannelay said: “There are some concerns but there is a plan to improve and the single fact that there is a parliamentary report on that and it’s available publicly means a lot – that means the UK is working on it.”

The UK received the top score in the indicator measuring financial burden to patients, indicating that 80% to 100% of end-of-life care services are paid for by sources other than the patient, much of it from charitable funding.

The authors praise the Dying Matters Coalition set up by the National Council for Palliative Care charity in the UK to encourage people to talk more openly about death and make plans for the end of life.

The EIU says the UK’s resources, like those of other countries, will be stretched in future by an an ageing population and non-communicable diseases including cancer, dementia and diabetes.

The authors say recent third-party research demonstrates a significant link in the use of palliative care and treatment cost savings. Despite evidence of the economic benefits, they point out that only about 0.2% of the funds awarded for cancer research in the UK in 2010 went to research into palliative care, while in the US it was 1% of the National Cancer Institute’s appropriation.

The Quality of Death Index, commissioned by the Lien Foundation, a Singaporean philanthropic organisation, is based on qualitative and quantitative indicators and took in interviews with more than 120 palliative care experts from around the world.

The UK came top in the only previous index, produced in 2010, although that was limited to 40 countries and the criteria has since been refined.

Complete Article HERE!

What You Say To Someone Who’s Grieving Vs. What They Hear

“This too shall pass.”

By 

1. What they say:

What they say:

What you hear:

What you hear:

When people say you need to move on, you can sometimes think, That’s easy for you to say. This isn’t your loss. Putting a timeline on grief is nearly impossible and unnecessary.

2. What they say:

What they say:

What you hear:

What you hear:

Someone who is grieving does not want to think about future spouses, or friends, etc., because that means thinking of a future that no longer includes their loved one.

3. What they say:

What they say:

What you hear:

What you hear:

You know in your heart there is no better place for your loved one than with you.

4. What they say:

What they say:

What you hear:

What you hear:

Losing a loved one is a HUGE part of someone’s life, and avoiding the subject will only make it worse. It’s OK to talk about it, and it’s OK to break down over it. It’s all part of the process.

5. What they say:

What they say:

What you hear:

What you hear:

Although this is meant to be comforting, every experience of loss is different, so no one truly knows how you feel.

6. What they say:

What they say:

What you hear:

What you hear:

Although we know no one would say this in a malicious way, it can come off as one of the worst things you could possibly say. While we’re glad you are appreciating your loved ones a little extra now, we just wish we still had our loved ones to appreciate.

7. What they say:

What they say:

What you hear:

What you hear:

In the aftermath of a loss, chances are we’re doing the best we can just to get out of bed most days, so hearing that we should be able to handle this with no problem will only make us feel like we’re handling it wrong.

8. What they say:

What they say:

What you hear:

What you hear:

No matter the situation surrounding a loss, knowing your loved one is no longer in pain is a very small comfort in a time of grief.

9. What they say:

What they say:

What you hear:

What you hear:

Evoking God and religion is a great comfort to many, but not all. Sometimes, even those who are deeply religious will feel anger toward God in the aftermath of a loss, and not want to hear it. NO reason is a good enough reason for your loved one to no longer be around.

10. What they say:

What they say:

What you hear:

What you hear:

If you want to help someone who is grieving, try doing something for them unprompted — like bringing over food, picking up their home, or taking their dog for a walk. It will mean a great deal.

11. What they say:

What they say:

What you hear:

What you hear:

Chances are, if you’ve lost a loved one, you’re already feeling guilt in some form. Letting someone know that their loved one wouldn’t want them to feel exactly what they are feeling could only make it worse.

12. What they say:

What they say:

What you hear:

What you hear:

Loss is a part of life, but not all losses are part of all lives. If you’ve lost a child, for example, hearing that what you’re experiencing is a “part of life” is especially upsetting.

13. What they say:

What they say:

What you hear:

What you hear:

Allowing yourself to feel emotion is strong.

14. What they say:

What they say:

What you hear:

What you hear:

Being told that you won’t always hurt so much for your loved one isn’t necessarily a comfort. You don’t want to hear you will move past them, even if you will.

15. What they say:

What they say:

What you hear:

What you hear:

You are, of course, thankful for the time you had with them, but you should be allowed to grieve for the time you’re going to miss — especially when so many others have time left with their loved ones.

Complete Article HERE!