by Sara Schilling, Tri-City Herald
Phillip Estes lived a long, fulfilling life.
A Harvard-trained physicist, his work took him around the country — ultimately to the Tri-Cities and the Hanford nuclear reservation.
He and his wife, Judith, were happily married for 54 years. They had two loving kids. They had so many wonderful times.
When Phil was diagnosed with cancer, he fought. He had part of his liver removed and endured other difficult treatment.
But, eventually, the cancer exploded throughout his body. He was in pain, with no hope of recovery. He wanted to die on his own terms.
However, accessing Washington’s Death with Dignity law — which provides a path for terminally ill people to end their lives — proved to be a significant challenge.
The option isn’t common or well-understood in this part of the state.
Phil’s daughter, Linda Estes, is determined to change that.
She’s on a mission to improve access and raise awareness — inspired by her father, who used the law to end his life in January 2016.
Death with Dignity isn’t the right choice for every person or family, Linda said.
But when it is, it should be far easier than it was for her family, she said.
Death with Dignity
Washington’s Death with Dignity Act took effect in 2009.
It allows terminally ill adults, who have less than six months to live, to request a lethal dose of medication to end their lives.
A doctor prescribes the medication, but doesn’t administer it. Patients must be able to take it on their own.
Calling the act “suicide” is wrong, saidSally McLaughlin, executive director of End of Life Washington, a resource and advocacy group.
“Suicide connotes a premature death that doesn’t need to happen — it’s the premature ending of a life,” she said. “The people who use Death with Dignity would live on if they could. They are already dying. They are simply choosing the manner and the hour of their death.”
More than 1,300 people have died after requesting lethal medication under Death with Dignity since 2009, according to the Department of Health.
Most of them have been from Western Washington — at least 90 percent each each year.
Experts point to lack of awareness and access as factors in the disparity between the west side and east side figures.
If patients and families don’t know it’s an option or how to access it, if health care facilities don’t participate or provide information, and if other resources are few and far between, it can be challenging to virtually impossible.
“The farther you go from Seattle, the more trouble you’ll have accessing Death with Dignity,” McLaughlin said.
‘It was in his control’
For the Estes family, the process was far from smooth.
Phil’s doctor at Kadlec Regional Medical Center in Richland agreed to give approval as the attending physician and write the prescription.
But then he discovered that doing so would break Kadlec’s policy, so the family was back at square one — making a flurry of calls to find help.
The family didn’t just need to find one doctor, but two.
Under the law, two physicians must sign off — the second to backstop the first, making sure the patient is competent and meets all other requirements.
“We’ve got two cell phones, three extension phones. Mom is carrying them around in a paper bag so whatever phone someone calls back on, we’ll get the call,” Linda said. “We called everyone we could think of.”
Finding a local pharmacy to fill a prescription — if they could even get one — also proved tough.
It was exhausting and frustrating, Linda said. “When you are in the middle of all that grief, you have about three brain cells to rub together” and the extra hurdles made it even harder, she said.
The Estes family could not find a local doctor to sign off as the attending physician. End of Life Washington eventually helped connect them family with a doctor in Spokane.
The doctor wanted to see Phil face to face, not by telemedicine, so the family had to figure out how to get the ailing 81-year-old, who struggled to sit up even for short periods, to the appointment.
They settled on a cabulance, to the tune of $1,400.
They also found a second doctor, and a Spokane pharmacy filled the prescription.
When it was finally settled, Phil was relieved, his daughter said.
“I put the little bag in Dad’s hand, and he was like, ‘Ahh,’” she recalled. “It was in his control.”
As part of her advocacy work, Linda reached out to Providence St. Joseph Health — Kadlec is part of the Providence network — in hopes of updating Kadlec’s policy.
She researched, sent off emails, even traveled to the Renton headquarters for an in-person meeting.
Kadlec’s position isn’t changing — it doesn’t allow doctors to participate or fill prescriptions — but there is now talk of adding specifics about where staff can direct patients who want more information.
The Tri-Cities’ other hospitals have varied stances on Death with Dignity.
Lourdes Health in Pasco doesn’t allow its doctors to participate.
Trios Health in Kennewick, on the other hand, does allow physicians to participate if they choose.
Trios is the area’s only public hospital system. Lourdes is a private Catholic institution. Kadlec is nonreligious, although Providence is a Catholic health network.
Linda plans to speak about Death with Dignity to several local groups in the coming months, from Rotary to the Benton Franklin County Medical Society.
She also plans a series of public seminars, starting with a session on “End of Life Choices” on April 26 in Pasco.
It’ll touch on Death with Dignity, but also other issues surrounding the end of life.
In July, a session on advanced planning is scheduled. And in September, Linda will hold a session for people interested in becoming volunteers.
A variety of volunteer options are available, from helping publicize events, to picking up prescriptions, to working with families directly and even being present at deaths.
During the session, “we’ll talk about what (prospective volunteers) want to do,” Linda said.
‘Force of nature’
McLaughlin said Linda Estes is a “force of nature” who’s doing important work.
“She speaks from deep experience and is very committed. She’s working hard to see that the Tri-City area has reliable, robust access to Death with Dignity for those who want it,” she said.
The people who want it tend to have some things in common.
Along with being from the west side, they’re most often white and have at least some college education.
They also range in age; in 2017, the span was 33 to 98 years old.
In most cases, they have cancer, although neurodegenerative diseases such as ALS also make the list, along with other illnesses.
In about one-third of cases, people who obtain the medication don’t end up using it, McLaughlin said.
Some become too sick to take it on their own, as required. Others decide they ultimately don’t want to.
In some cases, “simply knowing that they have a choice at a time in life when their choices have been drastically limited is palliative in nature,” McLaughlin said. “People are relieved to have a choice.”
Peaceful and calm
Phil Estes was a practical man, his daughter said
When treatment was still an option, he pursued it. But when his condition worsened and “the only option left was suffering, it didn’t make sense to him,” Linda said.
He said his goodbyes to friends and loved ones. On Jan. 4, 2016, he was ready.
Linda prepared the medication, with her longtime love, Paul, on hand for support.
Phil started the process of taking it. “He asked for music, and we put ‘The Lion King’ on,” Linda said. “I held one hand and Paul held the other and we just talked.”
By then, they’d said all the big things. They were close. Phil was a kind, wonderful father, Linda said.
“He was not ashamed to tell me that he loved me and he was proud of me. If I asked for advice, he would give it. And he would take advice from me,” she said.
They had a loving relationship.
Eventually, he laid back and closed his eyes. He said he was getting sleepy. Before too long, he was gone.
Linda had been scared of death, but watching her father’s passing changed that. “It was very peaceful, very calm,” she said.
It was what he wanted. And in the difficulty and challenge, Linda found a mission.
“It’s every family’s choice to decide what to do. Whatever you choose should be easy. It’s legal. It should be easy,” she said. “It should be fair and equitable for everyone in the state.”
The April 26 seminar is at 5:30 p.m. at the Mid-Columbia Libraries branch in Pasco.
To learn more about it or future sessions, or to inquire about volunteering, email email@example.com.
by JoNel Aleccia, for NPR Health Shots
Treading into ethically and legally uncertain territory, a New York end-of-life agency has approved a new document that lets people stipulate in advance that they don’t want food or water if they develop severe dementia.
The directive, finalized this month by the board for End Of Life Choices New York, aims to provide patients a way to hasten death in late-stage dementia, if they choose.
Dementia is a terminal illness, but even in the seven U.S. jurisdictions that allow medical aid-in-dying, it’s not a condition covered by the laws. Increasingly, patients are seeking other options, says Dr. Timothy Quill, a palliative care specialist at the University of Rochester School of Medicine and longtime advocate of medical aid-in-dying.
“Developing incapacitating dementia is certainly my and a lot of people’s worst nightmare,” he says. “This is an aggressive document. It’s a way of addressing a real problem — the prospect of advanced dementia.”
The document offers two options. One option is a request for “comfort feeding” — providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease. Another alternative would halt all assisted eating and drinking, even if a patient seems willing to accept it.
Supporters say it’s the strongest effort to date to allow people who want to avoid the ravages of advanced dementia to make their final wishes known — while they still have the ability to do so.
“They do not want their dying prolonged,” says Judith Schwarz, who drafted the document as clinical director for the advocacy group. “This is an informed and thoughtful choice that needs a great deal of reflection and discussion.”
But critics say it’s a disturbing effort to allow withdrawal of basic sustenance from the most vulnerable in society.
“I think oral feeding is basic care,” says Richard Doerflinger, an associate scholar with the Charlotte Lozier Institute, which opposes abortion and euthanasia. “It’s what they want here and now that matters. If they start taking food, you give them food.”
Advance directives are legally recognized documents that specify care if a person is incapacitated. They can confirm that a patient doesn’t want to be resuscitated or kept on mechanical life support, such as a ventilator or feeding tube, if they have a terminal condition from which they’re not likely to recover.
However, the documents typically say nothing about withdrawing hand-feeding of food or fluids.
The New York directive, in contrast, offers option A, which allows refusal of all oral assisted-feeding. Option B permits comfort-focused feeding.
The options would be invoked only when a patient is diagnosed with moderate or severe dementia, defined as Stages 6 or 7 of a widely used test known as the Functional Assessment Staging Tool (FAST). At those stages, patients would be unable to feed themselves or make health care decisions.
The new form goes further than a similar dementia directive introduced last year by another group that supports aid-in-dying, End of Life Washington. That document says that a person with dementia who accepts food or drink should receive oral nourishment until he or she is unwilling or unable to do so.
The New York document says, “My instructions are that I do NOT want to be fed by hand, even if I appear to cooperate in being fed by opening my mouth.”
Whether the new directive will be honored in New York — or anywhere else — is unclear. Legal scholars and ethicists say directives to withdraw oral assisted-feeding are prohibited in several states.
Many care facilities are unlikely to cooperate, says Thaddeus Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law. Doctors have a duty to honor patient wishes, but they can refuse if they have medical or moral qualms.
“Even solidly legal advance directives do not and cannot ensure that wishes are respected,” Pope writes in an email. “They can only ‘help assure’ that.”
Directors at End of Life Choices New York consider the document “legally sturdy,” Schwarz writes, adding: “Of course it’s going to end up in court.”
Whether assisted feeding can be withdrawn was at the center of recent high-profile cases in which patients with dementia were spoon-fed against their documented wishes because they continued to open their mouths. In a case in Canada, a court ruled that such feeding is basic care that can’t be withdrawn.
People who fill out the directives may be more likely to have them honored if they remain at home, Schwarz says. She stresses that patients should make their wishes known far in advance and choose health care agents who will be strong advocates. Attorneys say the documents should be updated regularly.
Doerflinger, however, says creating the directive and making it available misses a crucial point: People who don’t have dementia now can’t know how they’ll feel later — yet, they’re deciding in advance to forgo nourishment.
“The question is: Do we, the able-bodied, have a right to discriminate against the disabled people we will later become?” Doerflinger says.
Already, though, Schwarz has heard from people determined to put the new directive in place.
Janet Dwyer, 59, of New York, says her family was horrified by her father’s lingering death after a heart attack four years ago; Her family has a strong history of dementia, so when Dwyer learned there was a directive to address terminal illness and dementia, she signed it. So did her husband, John Harney, who is also 59.
“Judith informed me of the Option A or Option B scenarios,” says Dwyer, who opted for the more aggressive option — refusal of all oral assisted-feeding. “I said, ‘Well, that is just perfect.”
Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.
by Samantha Wohlfeil, the Inlander
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.
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.”
PLANNING FOR THE UNKNOWN
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.”
EAST SIDE, WEST SIDE
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.”
NOT FOR EVERYONE
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.”
Samantha Wohlfeil covers social services, the environment, tribes and other issues for the Inlander. Before joining the paper in February 2017, she worked as a political reporter at the Bellingham Herald in northwest Washington.
From Death With Dignity, deathwithdignity.org:
As our partner organization, End of Life Washington gears up to celebrate the 10th anniversary of the Washington Death with Dignity Act next November, EOLWA Executive Director Sally McLaughlin is preparing for the next 10 years. We spoke with her earlier this month about the organization’s recent accomplishments, long-term goals, and strategies to confront challenging issues in the year ahead.
What was one of EOLWA’s most significant accomplishments in 2017?
The thing that has of late gotten us the most attention and press is our organization’s latest end-of-life planning document: the recently published instructions for oral eating and drinking. We worked hard to develop a document which allows a person to articulate her wishes about when to be offered food and fluids during late-stage dementia. We are pleased to offer this resource to all Washingtonians.
How do you measure EOLWA’s success?
We monitor how many Washingtonians die from ingesting medication prescribed to them by their doctors under the Washington Death with Dignity Act; then, we look to see how many were clients of ours. In 2014, there were 127 deaths; 124 of those were clients of ours. In 2015, there were 219 deaths, and 202 of those were our clients. We are seeing a subtle growth in people who are able to access and complete the Death with Dignity process on their own, without our assistance. From our perspective, that is a very positive development.
In the final analysis, we do not want to be a self-perpetuating organization. Our goal is to do our job right and so well that eventually we won’t need to exist. We want to see other organizations, especially hospices, take care of their own clients so that we don’t have to swoop in at the last minute. Now we are seeing other institutions taking care of their own patients who have chosen to end their lives using the Act. We are pleased to see the role we have played in helping organizations get to that point.
What are some examples?
We are supporting a designated social worker at the University of Washington Medical Center. She is doing such a phenomenal job that she doesn’t need us anymore, which of course is part of our goal. Making sure UW Medical Center has its systems and personnel in place helps them to better steward their death with dignity patients, leaving EOLWA in an advisory role.
We continue to work with Washington State hospices as well as facilities such as Seattle Cancer Care Alliance to support them as they develop robust protocols to respond to patient requests for death with dignity. We’re still the clearinghouse for information about end-of-life options and referrals, but we are seeing slow but measurable progress among healthcare organizations in our state.
It can be a challenge to provide services to patients in rural areas. How is EOLWA working to serve people outside of Washington’s population centers?
It’s a real challenge for us because of our desire to provide rigorous training and mentorship to people who work under the EOLWA name. Our normal process when you become a volunteer client advisor entails an in-person interview followed by an online information training, including quizzes which highlight understanding. You must attend a 3-day in-person training and attend monthly meetings, and you work with a mentor for a minimum of one year. When people live in rural areas, it’s a little harder to participate in our program. How do we mentor you long-distance? We’re working on building teams in less populous parts of the state. Given that there’s less demand for Death with Dignity in more politically conservative rural areas, we could do what we need to do with a small team. We are slowly but surely building that infrastructure.
What are you most excited about for 2018?
I am excited to continue the growth that we’ve implemented with regards to our volunteers and their choices for involvement. I am most excited to see us get a better foothold in other areas of Washington state. I have begun setting up meetings with providers and potential volunteers in new areas. We continue to canvass senior centers, distributing our brochure and connecting with staff and residents.
Through our workshops and seminars, we address not only how qualified individuals can access the law; we also provide education about all end-of-life choices. Part of that education includes ensuring that every Washingtonian over 18 is aware of how to create a viable advance directive and how to access the law.
I want every Washington resident to know that she has the right to explore death with dignity or physician aid in dying. I take it personally when I hear someone from out of state say, ”If I come down with [a terminal illness,] I’m moving to Oregon to use the death with dignity law.” People need to know that Washington is one of the states that has this option, and that we can provide support and guidance to help them get their needs met.
On a personal note, I feel so fortunate to be able to work with an organization and for a cause that is so inherently meaningful. I came to the Death with Dignity movement after 42 years in the world of education. This work is just as meaningful, if not more so. That is why I continue to devote my time to ensuring Washingtonians have the information and the support they need to die on their own terms, with dignity and control.
op-ed from The Seattle Times, November 17th, 2017
by Robert A. Free
After moving my sister to a memory care home in Oregon following her Alzheimer’s diagnosis, I began exploring legal options of pursuing death with dignity if I am confronted with dementia. I don’t know that my sister would have wanted to end her life early in order to escape the ravages of serious dementia, but I want to exercise choice if I receive that diagnosis. I do not want my family to experience the pain that we experience as we watch my sister become a different person, slowly relinquishing her quality of life and sinking into unresponsiveness.
Washington’s Death with Dignity Act — and similar laws in Oregon, California, Vermont and Colorado — provide no relief for people with Alzheimer’s or other forms of dementia. The laws require that a person be mentally competent to choose a planned death, as well as receive a prognosis of six months or less to live.
The only legal option when faced with serious dementia is “Voluntarily Stopping Eating and Drinking,” or “VSED.” This option is available to persons in the very early stages of dementia when they still have sufficient cognitive ability to choose between life and death and enough fortitude to see the VSED process through. There is no requirement for a prognosis of six months or less to live.
There is another stage of progressive dementia toward the end of a person’s life during which an earlier and natural death is possible if certain documents are prepared before the person sinks into dementia. Almost all dementia patients eventually reach an unresponsive stage when nourishment becomes unimportant to them. Believing they have an absolute duty to provide nourishment, caretakers frequently cajole people to eat and drink beyond the time a person is interested in doing so.
Caregivers sometimes interpret a person’s open mouth when spoon fed as a desire to eat when medical practitioners tell us that opening the mouth when touched with a spoon is a reflex rather than an expression of a desire for food. Demented persons have the right to decline forced feeding, which is tantamount to an assault on the body.
End of Life Washington (formerly Compassion & Choices Washington) is an organization providing support for persons choosing end-of-life options. We recently drafted “Instructions for Oral Feeding and Drinking,” similar to an advance directive, a document which expresses a person’s decision about when to be offered food and fluids during late-stage dementia.
The instructions list several reactions — such as turning one’s head away, spitting out food, or appearing indifferent to being fed — which should be interpreted by caregivers as the desire to stop eating and drinking, thereby allowing the natural dying process to proceed. In addition to signing these instructions, it is vital to appoint a surrogate health-care decision-maker, pursuant to a power of attorney document, to make health-care decisions if dementia develops.
The appointed surrogate can make sure caregivers honor the demented person’s wishes to be allowed to stop eating and drinking if the indicators listed above are present.
VSED and these instructions are legal and certainly morally acceptable ways of helping people die with dignity if Alzheimer’s or other serious dementia strikes. Both can provide some solace to people who contract this tragic disease.
Robert A. Free is a retired attorney and board member and past president of End of Life Washington.
by JoNel Aleccia, Kaiser Health News
People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out.
They could document their wishes to halt such interventions — and have them honored — using advance directives.
That includes patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity.
But the practice has rarely — almost never — included provisions to refuse food and fluids offered by hand. Until now.
A Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life.
The group End of Life Washington, or EOLWA, which assists people using the state’s 2009 Death with Dignity Act, recently posted new “Instructions for Oral Feeding and Drinking” on its website.
Aimed at people with Alzheimer’s disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There’s another document explaining the do’s and don’ts of using it.
The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, said Sally McLaughlin, executive director of EOLWA.
“We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they’re being force-fed,” McLaughlin said. “Many, many folks understand that as they stop eating, they would like no one else to feed them.”
Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such “instructions” could be used essentially to starve the elderly or incapacitated.
“It really is troubling,” said Stephen Drake, research analyst for the disability rights group Not Dead Yet.
He points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.
“It really is a big game changer in the number of people whose lives can be ended when they’re in vulnerable situations,” Drake said. “In legal situations, this is a door-opener.”
Proponents of the guidelines say they fill a gap in information for people already interested in navigating the uncertain landscape that surrounds assisted feeding at the end of life.
“What we are saying is that there are objective and somewhat subjective conditions in the future where you can say ‘I’m giving you instructions now to help you interpret my wishes,’” said Bob Free, a Seattle lawyer who helped draft the document. “We have never really seen a standard form or advance directive to govern this.”
The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note.
“If I accept food and drink (comfort feeding) when they’re offered to me, I want them,” the document states.
But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped.
And the guidelines tell caregivers to respect those actions.
“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states. It adds that the “reflexive opening” of the mouth should not be interpreted as consent to eating.
“An analogy is the difference between when a knee is tapped with a hammer and the reflexive response is a knee jerk and when a person voluntarily raises his or her knee,” said Free. “We think this is a fairly objective test, which in real life will be clear.”
The new guidelines won’t be binding — legally or ethically, experts say. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.
“The hard part about advance directives is even though you put your wishes there, it doesn’t mean a medical professional will honor it — or that a facility will honor it,” said Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports medical aid-in-dying.
The new forms follow two recent high-profile cases in which family members said dementia patients were kept alive with spoon-feeding by caregivers, despite written requests to stop.
Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer’s in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family’s protests. A court ruling upheld that action, saying that food is basic care that cannot be withdrawn.
Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer’s disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.
Such cases horrify people who fear the same fate. Nancy Christensen, 60, a Seattle nurse, said she updated her living will herself within days of reading about Harris.
“I thought, ‘Wow, I need to be much more specific,’” said Christensen, who appended notes saying she doesn’t want assisted feeding if she can no longer feed herself. “I don’t think anybody thinks about this until they’re too far into it.”
Free, 71, said he plans to fill out the new documents himself.
“It’s been a personal desire of mine to have a dignified death,” he said. “The idea that my sons would have to witness me in a deteriorated state is very frightening and demoralizing.”
Whether VSED, which stands for “voluntarily stopping eating and drinking,” can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025. Paul Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., said some people want to avoid the most debilitating stages of the disease.
“It’s not misery they’re afraid of,” he said. “They just don’t want years of withering.”
The EOLWA document is a novel tool, but it may not go far enough, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying. The conditions it lists typically apply to the final stages of dementia, she said. Some patients want the right to refuse food earlier in the disease process in a deliberate effort to hasten death.
Until now, however, there have been few models for articulating those desires.
“It certainly is an improvement over no previous mention of hand-feeding,” Schwarz said. “Maybe this is where it must begin.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.
From our friends at End of Life Choices New York:
“The American Nurses Association’s (ANA) Center for Ethics and Human Rights recently released a new position statement on Nutrition and Hydration at the End of Life. In this position statement and its accompanying recommendations, the ANA now recognizes that decisionally capable patients have an acknowledged right to voluntarily stop eating and drinking (VSED) as a means to hasten their dying. The ANA is traditionally a rather conservative organization; it tends to make changes slowly and cautiously as the professional organization that represents the interests of the nation’s 3.6 million registered nurses. So this revised position statement is a big deal.
Although there has long been a well-established legal right for patients or their surrogates to forgo any life-prolonging treatment (including medically provided nutrition and hydration), orally provided food and fluid has previously not been specifically addressed by the ANA.
As increasing numbers of suffering patients choose to intentionally hasten death by VSED, some nurses continue to question whether hastening death in this manner can be distinguished from an act of suicide. This can be a particularly difficult choice to professionally support when the patient’s suffering is not caused by a terminal illness or intractable physical pain. When a patient chooses to VSED, it can be argued that the ‘terminal fast’ is the cause of death rather than any underlying disease. Some nurses may feel morally complicit if they provide palliative support to such patients – particularly if they are untrained in principles of palliative care.
This revised position statement ought to relieve some of that anxiety as it specifically states that “some people who choose VSED may not be imminently dying. Psychological, spiritual or existential suffering, as well as physical suffering, can lead to patient requests for hastened death.” While acknowledging the importance of good palliative symptom management (both for the underlying disease and any symptoms associated with fasting), the statement concludes “VSED at the end of life is used to hasten death, and is a reflection of autonomy and the patient’s desire for control.”
by JoNel Aleccia, Kaiser Health News
Bill Harris is blunt: For more than a year, he has been trying to help his wife die.
The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.
“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”
Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.
The onetime Virginia Woolf scholar and world traveler can no longer communicate, recognize family members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted living center here, after a local judge ruled against Bill Harris last summer, concluding that state law mandates that she continue to receive help.
“She did not want to be in a position where somebody had to totally take care of her,” Bill Harris said. “When nature, through the disease, basically said, ‘I can’t feed myself,’ Nora’s position was, that’s it. Let nature take its course.”
In recent weeks, Nora Harris has been gaining weight, climbing from less than 100 pounds to 102 or 103 — just enough to keep her stable. Bill Harris learned that, in addition to three state-required daily meals, staffers have been feeding Nora optional snacks, too.
Now he’s considering going back to court to try to stop the snacks in an effort to let Nora Harris lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to 90 pounds and was enrolled in hospice, with six months or less to live, only to rebound, he said, when staffers coaxed her to eat.
“You’re denying Nora the right to die on her terms,” Bill Harris said. “It’s not a right-to-life issue, it’s a right-to-die issue.”
The southern Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias.
Advance directives are legal documents that spell out a person’s end-of-life wishes if they are unable to make their own decisions.
These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, and an expert on end-of-life law.
Across the U.S., the more than 5 million people living with dementia are typically encouraged to put their end-of-life wishes into writing early and to pick a trusted person to carry them out, said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.
That’s no guarantee, however, that those requests can — or will — be honored. In Nora Harris’ court case, her advance directive and testimony from her husband, her daughter and two close friends all indicated that she wouldn’t want anything to prolong her life.
“That court decision basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill Harris said. “They gave her no exit out of this situation.”
But Eric Foster, the court-appointed lawyer who represented Nora Harris, argued that her directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document.
Bill Harris said that opening her mouth is a reflex, an automatic response to six decades of habit.
Kallmyer, with the Alzheimer’s Association, said it’s hard to tell whether someone with dementia is acting out of reflex or desire. The association recommends against tube-feeding for patients with dementia, while also advising what they call “careful hand-feeding.”
“If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it,” she said.
Foster’s stance was backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water.
“Our concern was just focused on the administrative rule,” he said. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.”
Lynn Rawlins, the center’s administrator, said her hands are tied.
“We have to feed them until they stop opening their mouths,” she said before a tour of the center last month. “Unless feeding them causes more harm from aspirational pneumonia or a choking factor. We still have to feed them, even if they choke.”
Nora Harris is a small woman with graying brown hair and dark, confused eyes. On a recent 88-degree summer afternoon, she wore a maroon fleece sweater, gray sweatpants and mismatched socks.
She spoke in urgent whispers, syllables spilling out, unlinked from words.
Bill Harris put an arm around her shoulders reassuringly.
“Absolutely,” he said. “Of course.”
But he added later: “It’s difficult visiting her, especially when you know what Nora was like before.”
That’s the thorny issue at the heart of advance directives for people who lose the capacity to make their own decisions, said Pope.
If Nora Harris were aware enough to refuse food, instead of passively accepting it, there would be no question.
“Do we listen to the previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not legally or ethically answered well.”
A bill introduced in the Oregon Legislature last year would have allowed an appointed committee to amend the state’s advance directive form. Critics, including Oregon Right to Life, an advocacy group, opposed the effort, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris.
“OR legislators move to allow starving, dehydrating the mentally ill,” one headline read.The bill passed the state Senate, but failed to advance.
Nora Harris’ situation also raises issues surrounding a controversial method of hastening death for seriously ill people known as “voluntarily stopping eating and drinking,” or VSED. It causes death through dehydration, usually in seven to 14 days.
VSED is being used by a small but growing number of determined patients with the help of their families, Pope said.
In Washington state, board members at End of Life Washington, a nonprofit that supports medical aid-in-dying, created an advance directive focused on people with dementia. Soon the group plans to release a new form for people who want to leave instructions for stopping eating and drinking at the end of life.
Medical experts say VSED can be a relatively painless, peaceful death. In the absence of nutrition and hydration, the body produces opiate-like substances that blunt hunger and thirst. With additional painkillers, comfort can be ensured, they add.
An analysis of VSED research concluded that “terminally ill patients dying of dehydration or starvation do not suffer if adequate palliative care is provided.” A 2003 survey of nurses in Oregon who helped more than 100 patients with VSED deaths said they were “good” deaths, with a median score of 8 on a 9-point scale.
Unlike aid-in-dying laws or rulings now in place in six states, VSED doesn’t require a government mandate or doctor’s authorization.
But the question of whether people with dementia can authorize a VSED death in advance, to be enacted later, when they’ve lost the capacity to choose, remains legally uncertain, Pope said.
“We don’t have statutes, we don’t have regulations, we don’t have a court case,” Pope said. “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”
For now, the answer in the case of Nora Harris is no.
That’s frustrating for Bill Harris, who says the emotional — and financial — toll of her illness has been enormous.
“The person you know, the person you married, who you love, is basically going away, fading away before your eyes,” he said.
He had planned to retire from his job at Wells Fargo bank at age 67 but worked an extra eight years to pay for the costs of Nora’s care, which total more than $80,000 out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for Medicare or other government help.
Worse, though, is seeing his once “extremely bright” wife wandering the halls of the assisted living center, “like a zombie,” he said.
“Nora was quite enamored of Virginia Woolf,” Bill Harris said, referencing the British author who drowned herself after years of mental illness.
“If she had known this would happen, she would have put rocks in her pockets and jumped in the river. This is absolutely where she never wanted to be.”
by Robert Samuelson, via The News Tribune
For those of us who had hoped that American attitudes toward death were shifting in ways that would promote a wider reconstruction of the health-care system, there’s discouraging news from Health Affairs, the preeminent journal of health policy.
It devotes its latest issue to “end-of-life” care and finds that — at least so far — the power to make health care more compassionate and cost-effective is limited.
That was the vision. Americans would become more realistic about death. Through “living wills,” they’d reject heroic, often futile, treatment to keep them alive. Health spending would be lower (by one estimate, a quarter of Medicare spending occurs in the last year of life).
People would die with dignity. They’d be spared needless suffering.
Superficially, the vision seems to be triumphing, according to the 17 studies in Health Affairs. By one study, a third of American adults — and nearly half those 65 and older — have some sort of living will.
From 1999 to 2015, the share of Americans who died in hospitals dropped from more than half to 37 percent. Over the same period, the number dying at home or in a hospice rose from less than a quarter to 38 percent. Moreover, at 8.5 percent of health costs, spending in the last year of life is lower in the United States than in some other countries.
But on inspection, the gains seem less impressive. The share of people with living wills has remained stuck for six years. According to another study in Health Affairs, the increase in hospice care is not substituting for expensive hospital care but adding to it.
“What has emerged [is] a relatively new pattern of hospice use,” said the study by Melissa Aldridge of Mount Sinai hospital in New York and Elizabeth Bradley of Vassar College. “Hospice enrollment [has become] an ‘add-on’ in health care after the extensive use of other health care services and within days of death.”
Patients receive expensive care until nearly the end, when they’re switched to hospice care. This obviously limits the potential for reducing costs and for relieving patients’ suffering.
In addition, spending for the last year of life, though significant, is still a small share of total spending, refuting the argument that the high cost of dying explains why U.S. health care is so costly.
“We found that U.S. health spending [during the last year of life] was less than one-tenth of total U.S. health care spending [8.5 percent] and thus cannot be the primary cause of why U.S. health care is so much more expensive than care in other countries,” concluded another study in Health Affairs headed by Eric French of University College London.
None of this means that end-of-life care can be ignored. Indeed, the problems will almost certainly worsen, because much care-giving is by families and friends. Already, 29 percent of the adult population — two-thirds of them women — consider themselves caregivers.
As the population ages, the burdens will grow. In 2010, the ratio of potential caregivers (people 45 to 64) to those aged 80 and older was 7-to-1; by 2030, it’s projected to be 4-to-1. Alzheimer’s cases are increasing. Spending pressures on Medicare and Medicaid will intensify.
Just whether the persistence of high-cost care reflects good medicine, a deep human craving to cling to life, or both is unclear. But the rhetoric about “end-of-life” care has changed more than the reality. To the question — Can we die in peace and with dignity? — the answer is “not yet.”
Robert Samuelson is a columnist for Washington Post Writers Group.