Life-ending medications are legal in Washington, but getting them is a whole other story


Most people who’ve used lethal prescriptions under Washington’s Death with Dignity Act were white, college-educated and lived in Western Washington. They ranged in age from 20 to 101; most were dying of cancer.


On a cold winter morning, Phil Estes gets into the private ambulance he’s hailed for the more than two-hour journey to Spokane, all 99 pounds of the former Hanford engineer clinging to his frail 6-foot-tall frame as his gurney is secured in the vehicle.

He’s taking this trip not to save his life, but to be able to end it. As weak as Estes is, this is his last resort.

The 81-year-old is several years into his fight against colon cancer. He can barely sit up for five minutes at a time, let alone take care of himself. He’s in pain, it’s hard to breathe and the cancer that has riddled his body is going to kill him. So he’s done.

He wants to take “the pill.”

“I’ve lived a long life, a happy life,” Linda Estes recalls her dad telling her family at the time. “I want you to go on with your life, but I’ve thought it all through, and this is the best option.”

But as his family would soon learn, getting a lethal dose of medication, which is legal under Washington’s Death with Dignity Act, involves much more than a single pill. And in Eastern Washington, it can mean long roadtrips to find doctors and pharmacies willing to validate a patient’s terminal illness and fill a fatal prescription.

In the 10 years since voters passed the Death with Dignity Act, the vast majority of terminal patients who have opted to die under the law lived in Western Washington — more than 90 percent of cases most years — despite Eastern Washington accounting for more than 20 percent of the state population.

The discrepancy between the two sides of the Cascades, experts say, is largely due to access: Even those who can cover thousands of dollars in out-of-pocket costs aren’t guaranteed to live in an area where a doctor or hospital system is willing to participate.

In Estes’ case, Dr. David Jones had been working with him for years and was willing to learn how to sign off as the attending physician and write him a prescription. That meant Estes just needed another consulting doctor to agree he was mentally competent, deathly ill and not being coerced to get the life-ending medication.

But Jones learned that participating would violate policy at Kadlec, the Tri-Cities hospital system where he works, and he feared he might lose his job. The previously secular system had recently been acquired by Providence, a Catholic health-care system that generally doesn’t allow its employees to participate under the rules of the act.

So the family scrambled to find other doctors.

“We called everybody we could think of,” Linda Estes recalls. “At one point my mother was carrying all the cellphones and the house extension in a bag with her, so whoever called, she could answer them.”

Eventually, with assistance from End of Life Washington, a Seattle-based organization that helps people navigate end-of-life options, they got in touch with a Spokane doctor willing to sign the attending paperwork, and a local physician agreed to handle the consulting role. But the Spokane doctor wanted to diagnose Estes in person, spurring the $1,400 contracted ambulance ride from Richland to Spokane.

After an exhausting day of appointments, Estes got his prescription.

“I got out to the ‘cabulance,’ and I put the bag in dad’s hands,” Linda Estes says. “He grabbed that little [prescription] bag and his whole body relaxed. He’d been so afraid that at the last minute, that this decision that was his to make would be snatched from him.”

Estes took the medication at home Jan. 4, 2016, fell asleep and died peacefully with his daughter holding his hand.

But Linda Estes questions why it was so difficult to access something that was legal, especially when her father’s doctor was OK with the decision.

“My mom and I were able to accomplish this because we had the financial means and educational resources,” she says. “What do people do who don’t have these kind of resources? It shouldn’t be this hard.”

So she’s joining efforts to make the process easier for others and ensure physicians who want to sign off can do so.

Voter support for Initiative 1000 — Washington’s Death with Dignity Act — crossed typical ideological boundaries, with counties on both sides of the Cascades approving the measure.

Washington’s role in nationwide right-to-die efforts has a complicated history. In 1997, the U.S. Supreme Court reviewed a Washington state law that made physician-assisted suicide a felony. The court held that the law was fine, but also left the door open for states to pass laws allowing the practice if it wouldn’t violate their own constitutions.

That same year, Oregon became the first in the nation to enact its Death with Dignity Act.

A decade later, nearly 58 percent of Washington state voters approved their own version of the act, making Washington the second state in the country to allow the practice. Assisted suicide is still illegal under state law, but under the Death with Dignity Act, people who are already dying and meet the qualifications are not considered to be committing suicide — their underlying illnesses are listed as the cause of death on death certificates.

Since then, three other states — Vermont (in 2013), Colorado (2016) and California (2016) — and the District of Columbia (2017) have also legalized it. Opponents have filed various challenges in court, but each of the laws have been allowed to move forward. Montana hasn’t passed a similar law, but the state’s Supreme Court determined in a 2009 case that nothing in Montana law prohibits physicians from participating. That means about a sixth of the U.S. population lives in a state where the process is legal, and several states are currently considering similar bills.

The majority of American adults believe that someone has a moral right to end their life if they are suffering great pain with no chance for improvement (62 percent), or have an incurable disease (56 percent), according to a 2013 Pew Research survey on end of life. However, only 47 percent approved of laws allowing doctors to prescribe lethal medication to terminal patients.

How that process is referenced largely depends on viewpoint: Opponents typically refer to it as “physician-assisted suicide” or “euthanasia” (mercy killing), while proponents tend to use “death with dignity” or “physician aid-in-dying.”

Many opponents, including large sectors of the medical field and religious organizations, consider the act a crime or immoral. Some worry there could be a slippery slope: If patients think they are a burden on their families, they may feel pressured to die sooner; or insurance companies could decide it is cheaper to pay for fatal medication than further treatment. In summer 2016, Pope Francis told medical leaders that physician-assisted suicide was “false compassion.”

“Frailty, pain and infirmity are a difficult trial for everyone, including medical staff. They call for patience, for ‘suffering-with.’ Therefore, we must not give in to the functionalist temptation to apply rapid and drastic solutions, moved by false compassion or by mere criteria of efficiency or cost effectiveness,” the Catholic News Agency reported Francis saying. “The dignity of human life is at stake.”

But proponents point to very specific protections written into the law. More than one physician needs to determine someone is terminally ill and not being coerced. At least one witness to the request for medication must not be related or stand to gain financially from the person’s death. There are mandatory waiting periods and the chance to rescind a request before a prescription is filled.

In states where it is not legal, people sometimes take extreme measures to die on their own terms.

Lacie Agidius was drinking coffee with her father in Lewiston, Idaho, when he received the worst call of his life.

Her grandfather was on the other end. He’d dressed in his best Sunday suit, organized important documents and was calling to make sure someone knew where a few things were on the family farm before taking his own life.

“He had told [my dad], ‘I want you to know, I don’t want to freak you out: Today is the day. I’m getting ready to walk down to the car,'” Agidius says. “He said, ‘This is not a call for help. This is absolutely what I want to do.'”

After being diagnosed with prostate cancer, her grandfather chose not to treat it. For months, he’d told his family he was getting his affairs in order and planned to take things into his own hands if it came to the point where he was in too much pain and couldn’t care for himself, but they’d largely brushed him off or were in denial, Agidius says.

Then came the call. In an awful shock to Agidius’ father, not only did her grandfather warn him not to call authorities, but he also said if he wasn’t successful, he wanted them to “finish the job.” A half-hour drive away, her father refused and said, “You don’t need to do this.”

“The whole conversation was awful,” Agidius says. “That long car ride for my dad and brothers, not knowing what they were going to find, that whole experience was so traumatic.”

By the time they arrived, it was too late.

Agidius, who now works in hospice care in the Spokane-Coeur d’Alene area, says she wishes that life-ending meds would have been an option for her grandfather, as it would’ve made things easier on everyone to know what was coming, and would have been less frightening for him, as it would have provided certainty.

She still lives in Idaho, where lawmakers made physician-assisted suicide a felony in 2011, partly in response to efforts similar to those that legalized the practice in neighboring states.

“It is something that is hard for people on the Idaho side to think we wouldn’t have that option,” she says. “You plan that date, then you can have time with that person, you know it’s happening. You can say those things you want to say and not have a shocking situation.”


Jessica Rivers, an End of Life Washington volunteer

Aside from the planning required by mandatory waiting periods, people with life-ending meds tend to plan out the process with family, and in each of the cases volunteer client adviser Jessica Rivers has worked on, they tried to say meaningful goodbyes to their loved ones.

Rivers, who lives near Palouse, Washington, has been a volunteer with End of Life Washington for about four years, working with families in Pullman, Spokane and rural communities in the region.

In the first case she worked, she and other End of Life volunteers arrived on the date their client selected to find his home full with family, friends and neighbors.

“They had food and drink and had all been having his celebration of life that morning,” Rivers says. “It was really remarkable, because we just let them take their time and do what they needed to do.”

The man, dying of aggressive cancer, gave his own eulogy, and everyone surrounded him as he lay down in bed, took the medication and talked them through how he felt before falling asleep. In the quiet, someone started singing “Amazing Grace,” and everyone cried.

“It was very powerful for me, and it was very gentle and very peaceful for him,” Rivers says.

For her, the choice to get involved in end-of-life care started about 20 years ago, when she cared for her mother, who was dying of pancreatic cancer.

“I remember my mom looking at herself in the mirror one morning, and the cancer had just ravaged her body,” Rivers says. “She was actually, amazingly enough, OK with dying, but she wasn’t OK with the process of getting there, and I think that’s true for most of the folks I’ve been with at End of Life.”

Of the 25 cases she’s been involved with through the organization, each patient died, though only six of them decided to take the medication.

“The majority of them told me, ‘I may or may not use this, but it gives me peace of mind,'” Rivers says. “And one of the things I tell them on that first visit when I meet them is ‘I’m not invested at all in whether they take this or not.'”

As a volunteer, she typically meets with families a few times, offering information on what the process may look like, encouraging clients to get on hospice care, and talking about death and the dying process, which is new to many people.

“I think that helps reduce fear,” she says. “My little piece of advice to family members is try not to let the fear and grief interfere in the days to come that you have left with your loved one. Try to really balance that fear and grief with love and gratitude.”

Rivers, who spent several years working in hospice, feels people aren’t supported enough through the end of their lives, which can be distressing. One dying man Rivers spoke to last year blurted out in front of his adult children that if he couldn’t for some reason access lethal medication under Washington’s law, he had hunting guns in his basement.

“The fear and distress this caused his children was so obvious and apparent,” Rivers says. “But the reality is people who are desperate can do dramatic things, and that’s one of the reasons this law is so important. People should not have to feel desperate.”

Artist Melinda Hannigan fought cancer for years before deciding to take life-ending medication at her home in Twisp.

Of the more than 1,100 people who are known to have died after getting prescriptions for lethal medication under Washington’s law from 2009 through 2016, fewer than 150 lived east of the Cascades, according to data compiled by the Washington State Department of Health. Not all of those people took the medication.

About three-quarters of people who got prescriptions had cancer, while the rest were mostly people with neurodegenerative diseases such as Lou Gehrig’s disease or respiratory or heart disease.

People who use the law account for only about two of every 1,000 deaths in Washington, says Sally McLaughlin, executive director of End of Life Washington. Of the more than 54,000 people who died in the state in 2015, 166 used the medication, putting the number of deaths in that category slightly above the 141 people who died from the flu the same year.

“It’s not like it’s a rampant number of people, but the issues with access have to do with several things,” she says. “One is access to physicians who can or are able to prescribe life-ending medications in a more conservative environment. There are a lot of physicians who don’t even want to think about administering life-ending medications.”

Secondly, many doctors are not allowed to participate under the rules of their employers. Patients often have to form new relationships with doctors when they’ve got little time left.

Aside from the population size accounting for part of the difference, many people east of the mountains just don’t know the law exists, says Dr. Raleigh Bowden, who lives in Twisp and works as a volunteer medical adviser with End of Life.

“In my personal experience, a lot of people don’t know about the law,” Bowden says. “In fact I talked to one pharmacist [last] year who didn’t know we had a law.”

Patients need both a prescribing doctor and a consulting physician, who ensures the person isn’t being coerced. To be eligible, the patient must be a Washington resident, have about six months or less to live, and understand that there are other options, Bowden says.

Ideally consulting physicians see someone in person, but in rural areas, sometimes they have to use other options like electronic communication. From Twisp, Bowden will sometimes serve in the consulting role via Skype, as that part of the process mostly involves going over a checklist with the patient.

Attending doctors almost always want to see the patient in person, Bowden says, and it’s better if they’ve already had a relationship. Jones, Estes’ doctor, says it was the fact he’d known him for eight years that made him comfortable with the idea of supporting his decision.

“It was the perfect situation for me to say, ‘Wow, how could I deny this?'” Jones says. “Whatever my beliefs were, I was a physician in the state of Washington where this was legal. It took the politics out of it for me until the very end when I realized I might be at risk of losing my job.”

Aside from physicians, the medication itself can pose problems.

End of Life Washington recommends one of two prescriptions. The first and cheapest runs about $700, but needs to be made in a compounding pharmacy, which often isn’t available in rural areas, Bowden says.

The second and most expensive option involves opening up about 100 capsules of Seconal, once regularly prescribed as a sleeping pill, and mixing the contents with juice or something the patient can drink. With only one manufacturer making the drug anymore, the price for that dosage has gone up from a few hundred dollars when Washington’s law started to more than $3,000.

“If you’re poor — and I have yet to see an insurance company pay for this, though I hear some will — then the cost falls into the lap of the patient or their family,” Bowden says. “That’s a barrier if you come from a poor part of the state.”

The most common reasons Washington patients told their doctors they wanted life-ending meds was because they were losing autonomy and the ability to engage in activities that make life enjoyable, with 84 percent to 100 percent of patients citing those two reasons every year from 2009 to 2016, the most recent for which state data has been released.

In contrast, inadequate pain control or concern about it was cited by 25 percent to 41 percent of patients, and only 2 percent to 13 percent cited concerns about the cost of medical treatment.

For many years, Pat and Melinda Hannigan lived in Seattle, where Melinda was an artist and Pat worked as a tanker pilot in Puget Sound. Melinda was hanging some of her paintings for a show in Tacoma when she had a shooting pain go through her head and half of her face became paralyzed. What they initially thought was a stroke was actually due to a tumor, part of an aggressive cancer that would spread to other parts of her body.

Hannigan tried every treatment available, but after years of radiation, chemotherapy and other therapies destroying her body, her quality of life was awful, Pat Hannigan says.

She could barely swallow or speak, was put on a feeding tube for more than a year and was confined to a wheelchair. After going on hospice care in the home the couple had built in Twisp, she decided to take the medication.

When it came time, Pat had to drive an hour to Omak to get the pills, which cost them about $4,400 out of pocket.

Hannigan shared a final dinner with her kids and grandkids and was surrounded by family when she took the lethal dose in July of 2016.

Pat Hannigan says it was the right decision for his wife and was in keeping with her choices to accept or decline treatment at every step of her illness. Still, he hasn’t spoken to many people about the experience, in part because he doesn’t want to influence others, who need to make that choice for themselves. However, he thinks those who oppose the law don’t understand what it’s like.

“I hear people criticize it and I think to myself, ‘They have never been through an experience like this in their lives,'” Hannigan says. “It’s really easy for them talk based on their religious beliefs or their philosophical principles, but if you live through four years of absolute, total hell, with no hope, Death with Dignity is an awesome thing.”

Policies about physician participation under the act vary even within the same system.

For example, Providence physicians in Spokane are not allowed to participate under the rules of the act in any way, even though physicians at Swedish, a Providence-affiliated hospital in Seattle, are allowed to if they choose.

“We respect the rights of patients and their care team to discuss and explore all treatment options and believe those conversations are important and confidential. As part of a discussion, requests for self-administered life-ending medication may occur, but our providers do not participate in any way in assisted suicide,” writes Liz DeRuyter, director of external communications for Providence Health & Services. “We provide all other requested end-of-life and palliative care and other services to patients and families.”

MultiCare, the other large service provider in Spokane, does allow its physicians to participate as attending and consulting physicians, and they may write prescriptions. However, no MultiCare physicians or pharmacies can help patients fill the prescriptions, meaning they need to find another pharmacy to fill it.

In her efforts to increase access, Linda Estes is working with Providence to change the policy at its Tri-Cities affiliate hospital to allow physicians to participate under the law, even if that means doing so outside of the scope of the hospital system. She’s been in contact with a Providence attorney about helping draft that policy, which is under consideration.

Estes says she’s passionate about making that change because when a family member is dying, the last thing people need is additional stress around end-of-life decisions.

“When you’re grieving so hard, you don’t have brain cells left to deal with this,” Estes says. “Having been through it myself, and having been put completely through the ringer, I want to make sure this is an easier process to do. Not to say it’s the right choice for everyone, it’s just our choice.” ♦

Complete Article HERE!


Surgery near the end of life is common, costly — and often not what patients want


By Liz Szabo

At 87, Maxine Stanich cared more about improving the quality of her life than prolonging it.

She suffered from a long list of health problems, including heart failure and chronic lung disease that could leave her gasping for breath.

When her time came, she wanted to die a natural death, Stanich told her daughter, and signed a “do not resuscitate” directive, or DNR, ordering doctors not to revive her should her heart stop.

Yet a trip to a San Francisco emergency room for shortness of breath in 2008 led Stanich to get a defibrillator implanted in her chest — a medical device to keep her alive by delivering a powerful shock. At the time, Stanich didn’t fully grasp what she had agreed to, even though she signed a document granting permission for the procedure, said her daughter, Susan Giaquinto.

That clarity came only during a subsequent visit to a different hospital, when a surprised ER doctor saw a defibrillator protruding from the DNR patient’s thin chest. To Stanich’s horror, the ER doctor explained that the device would not allow her to slip away painlessly and that the jolt would be “so strong that it will knock her across the room,” said Giaquinto, who accompanied her mother on both hospital trips.

Surgery like this has become all too common among those near the end of life, experts say. Nearly 1 in 3 Medicare patients undergo an operation in the year before they die, even though the evidence shows that many are more likely to be harmed than to benefit from it.

The practice is driven by financial incentives that reward doctors for doing procedures as well as a medical culture in which patients and doctors are reluctant to talk about how surgical interventions should be prescribed more judiciously, said Rita Redberg, a cardiologist who treated Stanich when she sought care at the second hospital.

“We have a culture that believes in very aggressive care,” said Redberg, who at the University of California-San Francisco specializes in heart disease in women. “We are often not considering the chance of benefit and chance of harm and how that changes when you get older. We also fail to have conversations about what patients value most.”

While surgery is typically lifesaving for younger people, operating on frail, older patients rarely helps them live longer or returns the quality of life they once enjoyed, according to a 2016 paper in Annals of Surgery.

The cost of these surgeries — typically paid for by Medicare, the government health insurance program for people older than 65 — involve more than money, said Amber Barnato, a professor at the Dartmouth Institute for Health Policy and Clinical Practice. Older patients who undergo surgery within a year of death spent 50% more time in the hospital than others and nearly twice as many days in intensive care.

And while some robust octogenarians have many years ahead of them, studies show that surgery is also common among those who are far more frail.

Eighteen percent of Medicare patients have surgery in their final month of life and 8% in their final week, according to a 2011 study in The Lancet.

Complete Article HERE!


Researchers explore how people with Alzheimer’s disease use end-of-life medical services


Because people are now living longer and often healthier lives, the rate of some illnesses that are more likely to develop with age has risen. These illnesses include dementia. In fact, the number of us living with dementia was already 47 million worldwide in 2015. It could reach 131 million by 2050.

Dementia is a general term that includes different types of mental decline. The most common type of dementia is Alzheimer’s disease, which accounts for 60 to 80 percent of all dementia cases.

As Alzheimer’s disease worsens, older adults may become more likely to have trouble performing daily activities, can develop trouble swallowing, and may become less active. This increases the risk for other concerns like infections. These infections, such as pneumonia, can increase the risk for death. As a result, the cause of death for people living with Alzheimer’s disease is often infections or some other cause, rather than the Alzheimer’s disease itself.

A team of researchers from Belgium recently studied how people with Alzheimer’s disease use medical services during their final months. The goal was to learn more about the best ways to help older adults with dementia at the end of their lives. Their study was published in the Journal of the American Geriatrics Society.

The researchers studied information from people with Alzheimer’s disease living in Belgium who died during 2012. They compared two groups of people who were diagnosed with Alzheimer’s disease.

One group had death certificates that listed Alzheimer’s disease as the cause of death. This was the group who died because of Alzheimer’s disease.

The second group included individuals diagnosed with Alzheimer’s disease but with death certificates that listed another cause of death (like infections). This was the group who died with Alzheimer’s disease (but not of Alzheimer’s disease).

The researchers looked at the healthcare resources the two groups used in the last six months of life.

Of the more than 11,000 people in the study, 77 percent had something other than Alzheimer’s disease listed as the cause of death on their death certificate while 22 percent died of Alzheimer’s disease. The average age of these individuals was 85, and most were women.

People who died with Alzheimer’s disease were more likely to have at least one hospital admission and more intensive care unit (ICU) stays. People in both groups had about 12 visits with a doctor during the last six months of their lives.

However, the people who died with Alzheimer’s disease received fewer palliative care services. Palliative care helps keep us comfortable when we are near death or dealing with a serious illness. This included fewer palliative home care services during the last six months of their lives. They also spent fewer days in a nursing home.

People in the study whose cause of death was listed as something other than Alzheimer’s disease were also more likely to have invasive procedures compared to people who died of Alzheimer’s disease. These invasive procedures included being put on breathing machines and being resuscitated (the medical term for reviving someone from unconsciousness or apparent death).

The researchers concluded that older adults whose cause of death was Alzheimer’s disease used fewer healthcare resources than people whose cause of death was listed as something else even though they had been diagnosed with Alzheimer’s disease. The researchers suggested that recognizing late-stage Alzheimer’s disease as an end-of-life condition could influence healthcare providers to use more palliative care resources and fewer invasive procedures.

Complete Article HERE!


We Need to Revolutionize End-of-Life Care — Here’s Why


Because it’s time to start thinking about death differently.

By Laura Dorwart

When Victoria Chang’s mother was diagnosed with pulmonary fibrosis, she didn’t have a single person she felt she could turn to. Six years earlier, her father had a stroke that led to significant neurological changes, and now the young poet realized she alone would have to care for them both. None of her friends had sick or elderly parents, so she felt completely isolated.

What followed was a decade of navigating America’s imperfect end-of-life health care system, without much guidance from the doctors and specialists she so frequently encountered. When asked what she would have done differently over the course of the stressful years, Chang says, frankly, “Everything.”

“Everything was a learning curve, everything new,” she says, noting how she wished there had been more help for people like her. “Emotions were high, and we needed a case manager or a consultant or something. Hospice seemed to help, but in the end, there was only so much they could do.”

Chang’s experience caring for seriously ill loved ones is sadly not unique. Thanks to a combination of denial, a lack of know-how and flawed systems, most Americans don’t have the support they need when it comes to end-of-life care. According to a study by the California HealthCare Foundation:

Furthermore, a majority of those surveyed had not even communicated their end-of-life wishes to the loved one they would want making decisions on their behalf. That’s where Dr. Ira Byock, chief medical officer of the Institute for Human Caring at Providence St. Joseph Health, comes in. A renowned expert in palliative care and the author of The Four Things That Matter Most: A Book About Living and The Best Care Possible, Byock wants to reimagine health care as a more personal, approachable system. He wants to boost the person-to-person communication and eradicate denial — an approach he and his colleagues call Whole Person Care.

Dr. Byock

“[Whole Person Care] attends not just to your medical problems, but to your personal priorities, values and preferences,” explains Byock. “You’re someone with bodily needs but also have emotional, relational, social and spiritual parts of your life, all of which need to be attended to.”

This perspective may not seem all that radical, but it is clearly not the current practice. American medicine is good in that it’s a “problem-based system,” Byock says. “It is organized around your problem list on your chart. Everything we do, by design, responds to a problem on your list.” But life isn’t just a set of problems to be solved; patients have lives that extend well beyond the walls of hospitals and waiting rooms. Health care, in Byock’s opinion, should address this reality at all stages of life.

Perhaps most importantly, Whole Person Care includes patients’ families at every level of care. Byock emphasizes the significance of the familial role in a patient’s comfort, as well as the ripple effects of a single individual’s illness on loved ones and their network of relationships. “Whenever one person gets a serious diagnosis, everyone who loves that person shares in the illness. It’s a family and community issue.”

Chang, for one, can attest to the need for a system like Whole Person Care. “Looking back, I can’t remember the past decade because I was so busy helping everyone around me,” she says.

When asked what advice she would give to those caring for a family member or spouse dealing with a serious illness, Chang emphasizes the importance of self-care and finding community support in whatever form that might take. Remember that “it is OK to think about yourself and to take care of yourself,” she says. “Seek out groups to share with and to get emotional support. I only did this toward the end when I started reading about and writing to people on the pulmonary fibrosis foundation website. Those forums saved my life.” She also encourages folks in similar positions to consider their options, including daycare, homecare and facilities, and weigh the pros and cons of each.

Byock also encourages those faced with these situations to manage their own health: “People can experience wellbeing even in the midst of serious illness.”

Complete Article HERE!


Too many patients ‘die badly’ — 5 things to know


by Megan Knowles 

When states accept medical aid-in-dying practices, physicians risk becoming complicit in covering up the failures of their profession — particularly allowing patients to die badly, Ira Byock, MD, palliative care physician and CMO of Torrance, Calif.-based Providence St. Joseph Health’s Institute for Human Caring, argues in a STAT op-ed.

“Americans are rightly outraged by the mistreatment their dying loved ones commonly receive,” Dr. Byock wrote. “People deserve state-of-art treatments for their maladies as well as expert attention to their comfort and inherent dignity all the way through to the end of life. Both are necessary; neither alone will suffice.”

Here are 5 things to know about the article.

1. Although physicians do not want their patients to die, they must realize there comes a point when more medical treatments do not mean better care for patients. Additionally, patients’ family members and care givers must recognize their complicity in overtreating their loved ones.

2. In addition to causing patients unnecessary suffering during end-of-life-care, overtreating patients contributes to increased rates of moral distress, burnout, depression, addiction and suicide in physicians, Dr. Byock wrote.

3. Dying badly in the U.S. is most evident in university-based referral centers. Only 23 percent of incurably ill patients at UCLA’s cancer center were referred to hospice care before they died despite the American Society of Clinical Oncology’s recommendation for hospice care as a best practice, according to a study published in the Journal of Oncology Practice.

4. A separate study found UCLA patients with cancer regularly received excessive radiation treatments to tumors that had spread to their bones. Out of 54 patients who met criteria for single-dose treatment under appropriate clinical guidelines, only one patient was given the recommended one dose of radiation. Forty-two patients were prescribed 10 or more doses, which indicates a taxing treatment regimen.

5. To help keep patients from dying badly, medical leaders can draft public policies to fix longstanding flaws in clinical training, monitor members’ practices for indicators of quality end-of-life care, persuade hospitals to launch strong palliative care programs and work to implement regulatory reform to increase the minimum number of staff members in nursing homes while revoking the licenses of facilities that continually fail to meet residents’ basic needs, Dr. Byock wrote.

Complete Article HERE!


Most people want to die at home, but many land in hospitals getting unwanted care



By Andrew MacPherson and Ravi B. Parikh

Where do you want to die? When asked, the vast majority of Americans answer with two words: “At home.”

Despite living in a country that delivers some of the best health care in the world, we often settle for end-of-life care that is inconsistent with our wishes and administered in settings that are unfamiliar, even dangerous. In California, for example, 70 percent of individuals surveyed said they wish to die at home, yet 68 percent do not.

Instead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.

Using data from the Dartmouth Atlas — a source of information and analytics that organizes Medicare data by a variety of indicators linked to medical resource use — we recently ranked geographic areas based on markers of end-of-life care quality, including deaths in the hospital and number of physicians seen in the last year of life. People are accustomed to ranking areas of the country based on availability of high-quality arts, universities, restaurants, parks and recreation and health-care quality overall. But we can also rank areas based on how they treat us at an important moment of life: when it’s coming to an end.

It turns out not all areas are created equal. Critical questions abound. For example, why do 71 percent of those who die in Ogden, Utah, receive hospice care, while only 31 percent do in Manhattan? Why is the rate of deaths in intensive care units in Cedar Rapids, Iowa, almost four times that of Los Angeles? Why do only 12 percent of individuals in Sun City, Ariz., die in a hospital, while 30 percent do in McAllen, Texas?

Race and other demographics in a given area certainly matter. One systematic review of more than 20 studies showed that African American and Hispanic individuals utilize advance-care planning and hospice far less than whites. More research is needed to explore these differences and to close these gaps and demand high-quality, personalized care for people of all races.

But race and demographics don’t provide all the answers. For instance, Sarasota and St. Petersburg, Fla., are only 45 miles apart and have similar ethnic demographics. Yet we found that they score quite differently on several key quality metrics at the end of life.

A variety of factors probably contribute to our findings. Hospice, which for 35 years has provided team-based care, usually at home, to those nearing the end of life and remains enormously successful and popular, is under­utilized. Most people enroll in hospice fewer than 20 days before death, despite a Medicare benefit that allows patients to stay for up to six months. Hospice enrollment has been shown to be highly dependent on the type of doctor that you see. In fact, one study among cancer patients with poor prognoses showed that physician characteristics (specialty, experience with practicing in an inpatient setting, experience at hospitals, etc.) mattered much more than patient characteristics (age, gender, race, etc.) in determining whether patients enrolled in hospice. For example, oncologists and doctors practicing at nonprofit hospitals were far more likely than other doctors to recommend hospice.

Also, physicians in a given geographic area are likely to have similar approaches to health care. They may collectively differ from physicians in another area in their familiarity and comfort with offering hospice care to a patient. This may explain why hospice enrollment significantly varies among geographic regions.

Palliative care, which focuses on alleviation of suffering, is often misunderstood by doctors as giving up. Health professionals’ lack of longitudinal, substantive training in end-of-life care only compounds the problem.

Perhaps most important, fewer than half of Americans have had a conversation about their end-of-life wishes — a process known as advance care planning — and only one-third have expressed those wishes in writing for a health-care provider to follow when they become seriously ill. If people do not have a clear sense of their end-of-life wishes, it is easy to imagine that they may be swayed by a physician’s recommendation.

The private sector has led the way in addressing the under­utilization of hospice and improving end-of-life care. For instance, health insurers such as Aetna have devised programs integrating nurse-led case management services for seriously ill individuals, reducing costly and undesired emergency room visits while increasing appropriate hospice referrals. And start-ups including Aspire Health are working with communities to provide palliative care in people’s homes while devising algorithms to help payers and providers identify individuals who might benefit from palliative and hospice care.

Congress also is considering bipartisan solutions consistent with best practices. Congressional leaders have recently introduced several pieces of legislation that would test new models of care for those facing advanced illness, support health professionals in training for end-of-life care and ensure that barriers are removed for consumers to access care.

And Medicare, via its Innovation Center, has led the way in testing promising care models to support those at the end of life, including the Medicare Care Choices Model, which allows individuals to receive hospice care alongside traditional, curative treatment.

But the secret sauce may be a shift in culture. We will not improve the death experience until we demand that our public- and private-sector leaders act and that our local health professionals encourage person-centered end-of-life care.

As with any social change, progress will be driven by a growing awareness and a desire for justice among families and patients. There are good and bad places to die in America. However, to ensure a better death for all, we must confront not just geographic disparities but also our resistance to thinking about death.

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Learning To Advance The Positives Of Aging


By Judith Graham

What can be done about negative stereotypes that portray older adults as out-of-touch, useless, feeble, incompetent, pitiful and irrelevant?

From late-night TV comedy shows where supposedly clueless older people are the butt of jokes to ads for anti-aging creams equating youth with beauty and wrinkles with decay, harsh and unflattering images shape assumptions about aging. Although people may hope for good health and happiness, in practice they tend to believe that growing older involves deterioration and decline, according to reports from the Reframing Aging Initiative.

Dismal expectations can become self-fulfilling as people start experiencing changes associated with growing older — aching knees or problems with hearing, for instance. If a person has internalized negative stereotypes, his confidence may be eroded, stress responses activated, motivation diminished (“I’m old, and it’s too late to change things”) and a sense of efficacy (“I can do that”) impaired.

Health often suffers as a result, according to studies showing that older adults who hold negative stereotypes tend to walk slowly, experience memory problems and recover less fully from a fall or fracture, among other ramifications. By contrast, seniors whose view of aging is primarily positive live 7.5 years longer.

Can positive images of aging be enhanced and the effects of negative stereotypes reduced? At a recent meeting of the National Academies of Sciences’ Forum on Aging, Disability and Independence, experts embraced this goal and offered several suggestions for how it can be advanced:

Become aware of implicit biases. Implicit biases are automatic, unexamined thoughts that reside below the level of consciousness. An example: the sight of an older person using a cane might trigger associations with “dependency” and “incompetence” — negative biases.

Forum attendee Dr. Charlotte Yeh, chief medical officer for AARP Services Inc., spoke of her experience after being struck by a car and undergoing a lengthy, painful process of rehabilitation. Limping and using a cane, she routinely found strangers treating her as if she were helpless.

“I would come home feeling terrible about myself,” she said. Decorating her cane with ribbons and flowers turned things around. “People were like ‘Oh, my God that’s so cool,’” said Yeh, who noted that the decorations evoked the positivity associated with creativity instead of the negativity associated with disability.

Implicit biases can be difficult to discover, insofar as they coexist with explicit thoughts that seem to contradict them. For example, implicitly, someone may feel “being old is terrible” while explicitly that person may think: “We need to do more, as a society, to value older people.” Yet this kind of conflict may go unrecognized.

To identify implicit bias, pay attention to your automatic responses. If you find yourself flinching at the sight of wrinkles when you look in the bathroom mirror, for instance, acknowledge this reaction and then ask yourself, “Why is this upsetting?”

Use strategies to challenge biases. Patricia Devine, a professor of psychology at the University of Wisconsin-Madison who studies ways to reduce racial prejudice, calls this “tuning in” to habits of mind that usually go unexamined.

Resolving to change these habits isn’t enough, she said, at the NAS forum’s gathering in New York City: “You need strategies.” Her research shows that five strategies are effective:

  • Replace stereotypes. This entails becoming aware of and then altering responses informed by stereotypes. Instead of assuming a senior with a cane needs your help, for instance, you might ask, “Would you like assistance?” — a question that respects an individual’s autonomy.
  • Embrace new images. This involves thinking about people who don’t fit the stereotype you’ve acknowledged. This could be a group of people (older athletes), a famous person (TV producer Norman Lear, now 95, who just sold a show on aging to NBC) or someone you know (a cherished older friend).
  • Individualize it. The more we know about people, the less we’re likely to think of them as a group characterized by stereotypes. Delve into specifics. What unique challenges does an older person face? How does she cope day to day?
  • Switch perspectives. This involves imagining yourself as a member of the group you’ve been stereotyping. What would it be like if strangers patronized you and called you “sweetie” or “dear,” for example?
  • Make contact. Interact with the people you’ve been stereotyping. Go visit and talk with that friend who’s now living in a retirement community.

Devine’s research hasn’t looked specifically at older adults; the examples above come from other sources. But she’s optimistic that the basic lesson she’s learned, “prejudice is a habit that can be broken,” applies nonetheless.

Emphasize the positive. Another strategy — strengthening implicit positive stereotypes — comes from Becca Levy, a professor of epidemiology and psychology at Yale University and a leading researcher in this field.

In a 2016 study, she and several colleagues demonstrated that exposing older adults to subliminal positive messages about aging several times over the course of a month improved their mobility and balance — crucial measures of physical function.

The messages were embedded in word blocks that flashed quickly across a computer screen, including descriptors such as wise, creative, spry and fit. The weekly sessions were about 15 minutes long, proving that even a relatively short exposure to positive images of aging can make a difference.

At the forum, Levy noted that 196 countries across the world have committed to support the World Health Organization’s fledgling campaign to end ageism — discrimination against people simply because they are old. Bolstering positive images of aging and countering the effect of negative stereotypes needs to be a central part of that endeavor, she remarked. It’s also something older adults can do, individually, by choosing to focus on what’s going well in their lives rather than what’s going wrong.

Claim a seat at the table. “Nothing about us without us” is a clarion call of disability activists, who have demanded that their right to participate fully in society be recognized and made possible by adequate accommodations such as ramps that allow people in wheelchairs to enter public buildings.

So far, however, seniors haven’t similarly insisted on inclusion, making it easier to overlook the ways in which they’re marginalized.

At the forum, Kathy Greenlee, vice president of aging and health policy at the Center for Practical Bioethics in Kansas City and formerly assistant secretary for aging in the U.S. Department of Health and Human Services, called for a new wave of advocacy by and for seniors, saying, “We need more older people talking publicly about themselves and their lives.”

“Everybody is battling aging by themselves, reinforcing the notion that how someone ages is that individual’s responsibility” rather than a collective responsibility, she explained.

Underscoring Greenlee’s point, the forum didn’t feature any older adult speakers discussing their experiences with aging and disability.

In a private conversation, however, Fernando Torres-Gil, the forum’s co-chair and professor of social welfare and public policy at UCLA, spoke of those themes.

Torres-Gil contracted polio when he was 6 months old and spent most of his childhood and adolescence at what was then called the Shriners Hospital for Crippled Children in San Francisco. Back then, kids with polio were shunned. “It’s a real tough thing to be excluded,” he remembered.

His advice to older adults whose self-image is threatened by the onset of impairment: “Persevere with optimism. Hang in there. Don’t give up. And never feel sorry for yourself.”

Now age 69, Torres-Gil struggles with post-polio syndrome and has to walk with crutches and leg braces, which he had abandoned in young adulthood and midlife. “I’m getting ready for my motorized scooter,” he said with a smile, then quickly turned serious.

“The thing is to accept whatever is happening to you, not deny it,” he said, speaking about adjusting attitudes about aging. “You can’t keep things as they are: You have to go through a necessary reassessment of what’s possible. The thing is to do it with graciousness, not bitterness, and to learn how to ask for help, acknowledging the reality of interdependence.”

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