Alicia Mathlin felt like her body was no longer hers after several rounds of debilitating cancer treatment — so she decided to stop and focus on living her life. Matt Galloway talks to Mathlin about that decision and asks medical experts about the push for ‘common-sense oncology,’ which weighs the pros and cons of certain treatments against a patient’s quality of life.
Matt Galloway cuts through a sea of choice to bring you stories that transcend the news cycle and expand your worldview. It’s a meeting place of perspectives with a fresh take on issues that affect Canadians today.
When a treatment buys a few weeks or months but comes with with a lot of side-effects, then the perspectives of people with cancer may differ, says Dr. Christopher Booth.
People may celebrate a 2-week improvement in survival without acknowledging costs
Tom Somerville’s decision to stop medical treatment for his end-stage cancer was a personal one.
Somerville, 62, was diagnosed with colon cancer in 2021 that later spread to his liver. He had six months of chemotherapy to slow down the cancer, which he said also left him exhausted with nausea.
The Kingston, Ont., resident decided to take a break from treatment to enjoy a trip with his wife to Victoria.
“Things that you cherish change, right?” Somerville said. “I used to love being out in the bush, but now it is just nice to have a sunny day, sit with my family [and] have visitors.”
Somerville said he came to terms with his prognosis and decided to enjoy the rest of the life he has left, extending the chemo break to a full stop. He said he was relieved to not “feel crappy” from the treatment anymore.
Tom Somerville, left, and his wife, Katherine Somerville, enjoyed a vacation in Victoria while he paused cancer treatments.
Dr. Christopher Booth, Somerville’s medical oncologist at Kingston General Hospital, supports him in his decision.
Booth is also part of a group of cancer doctors in Canada and the U.S. who say medications with marginal benefits are overused for patients in the end stage of the disease. The oncologists have started a campaign through their website, journal articles and podcasts encouraging honest conversations about use of the drugs with cancer patients, their families and experts.
The goal of what they call “common-sense oncology” is to prioritize treatments that meaningfully improve survival and quality of life. They aim to address what they see as problems in the field, such as a lack of critical thinking in oncology training, falling standards for drug approvals and avoidance of end-of-life discussions.
Balancing hope and reality
Booth said while there have been incredible advances in cancer treatments in his 20 years of practice, there’s also an unfortunate reality: cancer can’t always be cured. He strives to convey it in a compassionate and clear way.
“Balancing … providing information but also providing hope, that’s the art of cancer care,” Booth said. “Balancing hope and reality, balancing treatment and quality of life and side-effects, that’s the tough part of this job.”
Booth said he thinks everyone would agree that a treatment that helps a patient live for extra months or years is very helpful. But when a treatment buys weeks with a lot of side-effects, then patient perspectives may differ.
In part that’s because the cancer drugs that can shrink tumours alsocome with side-effects, including fatigue, vomiting and hair loss.
Not having treatment for cancer isn’t giving up, says Rachel Koven of Kingston, Ont.
Dr. Bishal Gyawali, a medical oncologist and associate professor at Queen’s University in Kingston, was motivated to press for changes when he noticed increased spending on treatments that don’t make much difference in patients’ lives while at the same time agencies didn’t put resources to what’s already been proven to work.
Gyawali previously treated people with cancer in Nepal, Japan, and the U.S. and saw the same trends there.
When attending oncology conferences, Gyawali said presenters would celebrate a two-week improvement in survival from a new treatment. Then, behind closed doors, other delegates would talk about the risks and costs of the drug.
Rachel Koven’s husband, Ken Koven, was diagnosed in his late 40s with adenocarcinoma, which starts in gland cells of the esophagus tube. His cancer was found where the esophagus meets the stomach.
The father and avid runner treated having cancer like a battle, his wife said. He had nine months of palliative chemotherapy that’s given to relieve the symptoms of cancer and improve quality of life, but not meant to cure the malignancy.
The cancer spread. He then underwent radiation to the brain in Kingston, Ont. In 2016, about 16 months after the diagnosis, he died at age 49.
“For my husband, his hope was anchored in treatment,” Koven said. “However well-rounded the discussions we had, he would have always chosen treatment, and I can’t begrudge him for that because that is where he believed his strength was.”
Now, Koven feels families should ask more questions of doctors, such as:
How much time does this treatment offer?
What are the real costs and benefits of the treatment?
Koven said not having treatment is sometimes seen as throwing in the towel, but that can be misleading.
Dr. Bishal Gyawali wants people to ask whether a two-week improvement in survival is meaningful.
“Not having treatment isn’t giving up,” Koven said. “Sometimes by having treatment you are giving up. You are giving up time with your family. You are giving up a quality of life necessarily for something you are not trading off any extra days.”
Koven wrote an essay in 2018 on her experience as her husband’s caregiver in the Canadian Medical Association Journal. At the time, she was motivated “to contribute to the best possible life in the face of death.”
Now Koven advocates for the oncology field to “recalibrate” toward an emphasis on what brings the person joy rather than only focusing on treating their cancer. Finding novel treatments that will really benefit patients is also important to her.
Seek meaningful answers
Dr. Elizabeth Eisenhauer ran more than 170 cancer drug trials in Canada, the U.S. and Europe. Now retired, Eisenhauer won the 2021 Canada Gairdner Wightman Award for investigating new cancer drugs and delivery approaches, including for Taxol, an anti-cancer treatment.
“It’s a good thing we are having so much interest in finding novel therapeutics for cancer,” Eisenhauer said. “But my goodness, let’s find the answers that matter to patients, too.”
Eisenhauer recalled how in the 1980s, scientists set an arbitrary number as a standard, worldwide indicator of safe tumour shrinkage for early clinical trial research.
After that, measuring whether a tumour grew by 20 per cent on a CT scan, the definition of progression, became an endpoint, or goal, for pharmaceutical companies running randomized trials, Eisenhauer said. Randomized trials are meant to guide whether a drug should be used as a standard of care by physicians.
“You have an answer sooner [using tumour shrinkage], but is it an answer that is meaningful?” she said.
Eisenhauer would like to see cancer clinical trials include more criteria.
“I think common-sense oncology from my perspective as a trialist needs to come from the perspective of trying to be sure that the trials that we design at least can capture the information that will be of importance to those discussions with the patient sitting in front of you.”
Eisenhauer said there aren’t a huge number of game changers in oncology every year, but many are available in Canada. She said costs to patients in terms of side-effects and time coming to the clinic also need to be considered.
Randomized trials are meant to guide whether a physician should use a chemotherapy agent as a standard of care.
Despite that, other Canadian researchers looking last year at use of treatments like chemotherapy or major surgery among more than 151,000 people who died found that a treatment was commonly given — in 41 per cent of cases — in the last 30 days of life but was potentially inappropriate.
So far, Gyawali said the common-sense oncology movement is gaining momentum worldwide and he’s received positive feedback from regulators, physicians, patients and payers.
Tom and Katherine Somerville now take time every day to enjoy moments together, like walking down to the pond near their farmhouse, going for a drive on a sunny day or listening to old tunes.
For them, quality of life includes loving glances.
“You appreciate that moment and you want to take it all in and those are the simple things that really are not so simple,” Katherine said. “They’re the important things.”
Readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for systematically depleting the financial resources of older people.
Thousands of people shared their experiences and related to the financial drain on families portrayed in the Dying Broke series.
Thousands of readers reacted to the articles in the Dying Broke series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.
In more than 4,200 comments, readers of all ages shared their struggles in caring for spouses, older parents and grandparents. They expressed their own anxieties about getting older and needing help to stay at home or in institutions like nursing homes or assisted-living facilities.
Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.
Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.
“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller from Placitas, N.M., commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”
“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.
But other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.
“It was a long, lonely job, a sad job, an uphill climb.”
Marsha Moyer
What other nations provide
Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.
Marsha Moyer, 75, a retired teaching assistant from Memphis, said she spent 12 years as a caregiver for her parents in San Diego County and another six for her husband. While they had advantages many don’t, Ms. Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”
In contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career and helping her healthy but very old mother,” Ms. Moyer said. “She could have both. I had to choose.”
Birgit Rosenberg, 58, a software developer from Southampton, Pa., said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”
Birgit Rosenberg, 58, of Southampton, Pa.
Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650 a month long-term care policy because care is so much more affordable south of the border. Mr. Burns, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.
“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, my mom, they address her as Mom or Barbarita, little Barbara.”
Insurance policies debated
Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.
“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer from Fancy Gap, Va.
Derek Sippel, 47, a registered nurse from Naples, Fla., cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He said he pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit(s), but it makes me feel better knowing that I have it if I need it,” he wrote. He said he could not make that kind of money by investing on his own.
“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”
Pleas for more immigrant workers
One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive from Woodside, Calif., said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello people — we need more immigrants! Who do you think does most of this work?”
Victoria Raab, 67, a retired copy editor from New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”
“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Ms. Raab said.
“For too many, the answer is, ‘How can we hide assets and make the government pay?’”
Mark Dennen
Federal fixes sought
Others called for the federal government to create a comprehensive national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.
“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care,” she said.
John Reeder, 76, a retired federal economist from Arlington, Va., called for a federal single-payer system “from birth to senior care in which we all pay and profit-making removed.”
John Reeder, 76, at home in Arlington, Va.
Mark Dennen, 69, from West Harwich, Mass., said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding: “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”
<h2″>Questioning life-prolonging procedures
A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.
Dr. Thomas Thuene, 60, a consultant in Roslindale, Mass., described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”
Joan Chambers, 69, an architectural draftsperson from Southold, N.Y., said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.
“I don’t want to be a burden on anyone.”
Derek Sippel
“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years but we have to stop this cruelty.
“We have to remember that even though we are grateful to our health care professionals, they are not our friends, they are our employees and we can say no.”
One physician, Dr. James D. Sullivan, 64, from Cataumet, Mass., said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Dr. Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.
Thoughts on assisted dying
Others went further, declaring they would rather arrange for their own deaths rather than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen D. Clodfelter, 65, a library assistant from St. Louis. “When the money runs out I will take myself out of the picture.” Ms. Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”
Some suggested that assisted dying should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, from Sunnyvale, Calif., said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”
— Jennifer O’Brien’s father broke his hip while contending with advanced congestive heart failure. He declined surgery to fix it, opting for a peaceful death instead. She supported him. The system did not.
“Your dad declined the surgery to repair his hip fracture,” the anesthesiologist blurted incredulously over the phone. “Okay. I guess there’s no surgery then,” I responded. “Well, here, talk to the orthopedic surgeon,” he protested. I shrugged and said, “Okay” to no one as the anesthesiologist handed the phone to the orthopedic surgeon. The surgeon came on: “Your dad declined the surgery!” he exclaimed. “I heard,” I said. “I mean, your father said ‘No!’” I could visualize the surgeon’s wide eyes.
My dad was 85 years old with advanced congestive heart failure and severe lung disease. He had fallen two days before and sustained a neck of femur (NOF) fracture, also known as a hip fracture. I had been very involved in my dad’s healthcare for several years. His mind was sharp.
Several years before that, he had signed a do not resuscitate (DNR) order, a legal document saying that in the event of a cardiac arrest he did not want to be resuscitated, as well as a do not intubate (DNI) order, a legal document stating he did not want to be intubated in an emergent situation in which he was unable to breathe. Because “Do not ____” instructs clinicians to hold something back, these code status documents may also be referred to as an instruction to “allow natural death.”
The orthopedic surgeon was unconvinced, however, and pressed on. “He declined the surgery!” “Yes, I heard. My dad is crystal clear cognitively and entirely capable of making this decision, so I guess you can take the rest of the night off,” I told him. The surgeon chuckled and mumbled, “I wish.” At this point, he seemed to realize that while he may have to work into the night, it would not include operating on Jim O’Brien. We said our goodbyes and hung up.
About 30 minutes later, I called my dad and told him that while I would have supported his decision either way, I felt he had made a good choice.
My dad’s congestive heart failure had reached the final stage. He barely had the strength to stand and ambulate enough for trips to the bathroom. A sudden cardiac arrest was distinctly possible, if not likely. His advanced lung disease meant that for the last two years, his ability to breathe had been entirely dependent on a bilevel positive airway pressure, or “BiPAP,” ventilator.
By “entirely dependent,” I mean he could not exist, for even a few minutes, without a large face mask that covered his nose and mouth while forcing oxygen into his lungs. He could eat for a few minutes at a time but had to have a nasal cannula in order to breathe.
He was likely to die soon, and a major surgery now might well have ruined any chance he had of a peaceful, comfortable end of life.
The reactions of the two physicians who called made me realize that our case was unusual, both because of my dad’s decision against surgery and my unequivocal support of his decision. I got the impression most family members would have responded, “Oh no, let me talk to him.” They would have then called and said, “Daddy, if you don’t have this surgery you are going to die!”
But here’s the thing, he was going to die.
And while our deaths may not be as imminent as his was, so am I and so are you going to die. At the end of life comes death. At the end of a long life, with or without comorbidities, an NOF fracture may indeed be the onset of that final phase of life.
My late husband, a surgeon for 30-plus years and then a retrained, board-certified palliative medicine physician for another 10 years, named this final phase of life “Precious Time.”
He always said it with the emphasis on the first word, Precious Time. Precious Time is when death is likely, if not imminent. Precious Time is a type of time, the period of life that comes at the end. Not everyone has Precious Time; a sudden death does not allow for Precious Time.
Knowing that a loved one is into Precious Time allows for saying what needs to be said and doing what needs to be done, such as: I love yous, apologies, and reconciliations. Precious Time allows you to keep to yourself and not say what you might later regret. In recognizing that we are into Precious Time, we can minimize or eliminate the subsequent I-thought-we-had-more-time regrets and focus on the love, the honor, and the bereavement rather than a vague or acute befuddled remorse because we just didn’t want to talk about end of life.
Even with surgery to repair the hip fracture, there is a 27 percent 12-month mortality rate among 65-plus-year-olds. That is, there is a 27 percent chance that an otherwise healthy 65-year-old will not survive more than a year post NOF fracture. Add more years and comorbidities, and that mortality rate only increases. In other words, an NOF fracture, with or without surgery, is often the beginning of the end.
Another statistic is that 80 percent of people want to die at home rather than in a hospital or facility, “hooked up to a bunch of machines,” yet only about 20 percent do.
If we put these statistics together and add our just-fix-it culture, which has us operating now and asking questions later, I submit that a patient having to remain intubated postoperatively or never recovering is not the way we make the most of that Precious Time and not the way that most people want to spend their last days, weeks, or months.
And, having now lost every member of my family, including my husband, I can say from experience that when surviving loved ones are able to recognize and face that they are into Precious Time, they are likely to have an easier transition to grief and loss.
Fortunately for my father and me, my late husband taught me well. After my dad’s decision to forgo the surgery, I got in the car and drove across the country. In his hospital room, we talked about the fact that he was dying, and that the most comfortable way for that to happen was to convert his inpatient status to hospice, remove the BiPAP after a sedative, and he would sleep into an entirely natural death.
My dad and I spent our Precious Time together. We said our goodbyes as the medication took effect. I told him I loved him because I know that hearing is the last sense to go. I stayed with him until he took his last breath and then made the disposition arrangements we had discussed years prior. It was a beautiful, peaceful death at 85 years old, one week post NOF fracture.
In the three years since I had allowed the art journal I kept during the 22 months I cared for my husband, and about 18 months after his death, to be published as the book The Hospice Doctor’s Widow: A Journal, I have spoken on what I call the Triad of Certainty:
At the end of life comes death.
There are no do-overs in end of life.
Changed forever, surviving loved ones remain and remember.
There is absolutely no one who will not die at the end of life — no one. Some of us don’t get married, don’t have children, but all of us die. And if we are lucky enough to love others, there is a good chance that one or more of them will die before us and their death will have an impact on us for the rest of our lives.
I am not saying that if you or your elder loved one sustains a NOF fracture, they should forgo the surgery. I am saying that protocol for an NOF fracture in a patient older than 65 should call for a pause rather than an unquestioned trip to the OR.
And that pause should include a consultation with a family practitioner, gerontologist, palliative care team, medical ethicist, social worker, end-of-life doula or whoever can facilitate a meaningful conversation, or more likely a series of conversations. These conversations should assist the patient and family in recognizing Precious Time, establishing the goals of care, and having a say in designing their end-of-life experience (even if it ends up being years hence).
In July, Jennifer O’Brien got the phone call that adult children dread. Her 84-year-old father, who insisted on living alone in rural New Mexico, had broken his hip. The neighbor who found him on the floor after a fall had called an ambulance.
Ms. O’Brien is a health care administrator and consultant in Little Rock, Ark., and the widow of a palliative care doctor; she knew more than family members typically do about what lay ahead.
James O’Brien, a retired entrepreneur, was in poor health, with heart failure and advanced lung disease after decades of smoking. Because of a spinal injury, he needed a walker. He was so short of breath that, except for quick breaks during meals, he relied on a biPAP, a ventilator that required a tightfitting face mask.
He had standing do-not-resuscitate and do-not-intubate orders, Ms. O’Brien said. They had discussed his strong belief that “if his heart stopped, he would take that to mean that it was his time.”
Listening in on the phone while a hospital palliative care nurse-practitioner talked to her father about his options, Ms. O’Brien provided a blunt translation to an always blunt man: “Dad, your heart and lungs are done.”
The next day, he declined surgery to repair his hip. A startled anesthesiologist and an orthopedist called his daughter, apparently expecting her to talk her father into agreeing to the operation. She didn’t try.
“He was dying,” she said in an interview. “He’d either die comfortably or, with a big surgical incision, he’d die uncomfortably. Or die of something more complicated — potential infections, bowel obstructions, so many things that can happen.” Mortality rates after hip fractures, though improving, remain high.
Her father, who wasn’t cognitively impaired, had decided that surgery was “silly” and unnecessary. She supported his decision and contacted a local hospice.
Families often have to run interference in such scenarios, and a new study in JAMA Network Open helps explain why. The authors, most of them at Case Western Reserve University School of Medicine, analyzed five years of data from a cancer registry, nursing home assessments and Medicare claims to look at “aggressive end-of-life care” among 146,000 older patients with metastatic cancer.
They compared nursing home residents’ care in the last 30 days of their lives with the care for non-institutionalized patients living in communities, the lead author, Siran Koroukian, a health services researcher at Case Western Reserve, said.
The team looked for commonly used markers of aggressive care, including cancer treatment, repeated emergency room visits or hospitalizations, admission to an intensive care unit, lack of hospice enrollment until three days before death, and death in a hospital.
“In all probability, hospice should have been considered” for these patients, said Sara Douglas, a co-author and oncology researcher at the Case Western Reserve University School of Nursing.
Yet the majority of both groups — 58 percent of community dwellers and 64 percent of nursing home residents — received aggressive treatment in their final 30 days. A quarter underwent cancer treatment: surgery, radiation, chemotherapy
Although studies repeatedly show that most patients want to die at home, 25 percent of the community dwellers and almost 40 percent of the nursing home residents died in hospitals.
Hospice leaders, palliative care specialists, health care reformers and advocacy groups have worked for years to try to lower such numbers. “Patients who received this type of aggressive care experience more pain, actually die sooner, have a much poorer quality of life at the end. And their families experience more doubt and trauma,” Dr. Douglas said.
Because the researchers used large databases, the study can’t indicate whether some patients actually opted for continued treatment or hospitalization. Some treatments the authors deemed aggressive could instead have been palliative, intended to increase comfort, like radiation to shrink tumors that might impede breathing.
Still, “these are really sobering statistics,” said Douglas White, director of the Center for Ethics and Decision Making in Critical Illness at the University of Pittsburgh School of Medicine.
“The minute you have this conversation, people assume, ‘You’re giving up on me,’” Dr. Douglas said. Even having an advance directive and a Physician Order for Life-Sustaining Treatment, or P.O.L.S.T., doesn’t always ward off aggressive treatment.
But studies also show that even when crucial discussions take place, patients and surrogate decision-makers frequently misinterpret them. “Families often leave these conversations with much more optimistic expectations than their doctors meant to convey,” Dr. White said.
Sometimes, family demands prevail even over the patient’s own wishes. Jennifer Ballentine, chief executive of the Coalition for Compassionate Care of California, knew that one of her relatives didn’t want high-intensity care if he became terminally ill. But when he developed aggressive prostate cancer at 79, his wife insisted that he pursue treatment.
“He refused. He kept saying he just wanted to be in hospice,” Ms. Ballentine recalled. “She kept saying, ‘Absolutely not.’ ” He capitulated until, after three exhausting months of chemotherapy with several hospital stays, he died in hospice care.
The health care system could improve end-of-life care. When palliative care is introduced soon after a diagnosis, patients have a better quality of life and less depression, a study of people with metastatic lung cancer found. Though they were less likely to undergo aggressive treatment, they survived longer.
Palliative care doctors, skilled in discussions of serious illness, are scarce in some parts of the country, however, and in outpatient practices.
Adopting a so-called concurrent care approach to hospice might also ease these transitions. The Medicare hospice benefit requires patients to forgo treatment for their terminal illness; hospice through the Veterans Health Administration system, with more liberal criteria, allows patients to receive both treatment and hospice.
>A recent study of veterans with end-stage kidney disease, who were likely to die within days if forced to discontinue dialysis, shows the impact of concurrent care. Palliative dialysis — administered less often or for shorter periods than the standard regimen — can help control symptoms like shortness of breath.
“Being required to stop a treatment that is helping your quality of life can mean that you won’t sign up for hospice,” said the lead author, Melissa Wachterman, a palliative care doctor at Harvard Medical School.
In her study, veterans who discontinued dialysis when they enrolled in hospice received just four days of care before they died, so short a time that even expert hospices would struggle to provide full support. Those receiving concurrent dialysis as hospice patients, almost all through the V.A., averaged 43 days of hospice care.
Medicare has authorized pilot studies of concurrent care, but for now, patients and families must often seize the reins to make their end-of-life wishes known and determine how best to fulfill them.
>Some patients want every possible action taken to extend their lives, even briefly. For those who feel otherwise (former President Jimmy Carter, for instance), asking about palliative care and hospice can open the door to straightforward discussions.<
James O’Brien was among the latter. His daughter drove 12 hours, from Little Rock to Santa Fe, to spend a quiet day with him. “We had some good time together,” she said. “We talked about what was going to happen.”
She was there as the hospice team provided medication to keep him comfortable and withdrew the biPAP. “It was very peaceful,” she said. “I told him I loved him. I knew he could hear me. I stayed with him until he took his last breath.”
Complete Article ↪HERE↩!
Researchers from Rutgers and other universities have developed a behavioral model that explains a long-standing healthcare mystery: Why do so many terminally ill patients undergo intense last-ditch treatments with little chance of meaningful life extension?
Surveys repeatedly indicate that nearly all people would rather die peacefully at home, yet painful, long-shot treatments remain common, and efforts to reduce usage have failed.
Previous analyses have mostly emphasized patients’ treatment preferences at the end of life. The new model, which its creators named the Transtheoretical Model of Irrational Biomedical Exuberance (TRIBE), focuses squarely on clinician psychology and family dynamics.
“Old models tended to assume that clinicians were purely rational agents, leading patients toward logical choices,” said Paul R. Duberstein, lead author of the study and chair of the Department of Health Behavior, Society and Policy at the Rutgers School of Public Health. “Once doctors have recommended a treatment or procedure, there’s enormous pressure on patients to undergo it.”
The TRIBE model combines two older theories – Socioemotional Selectivity Theory and Terror Management Theory – to explain why this happens. The model shows how emotional pressures on doctors and complex family dynamics provoke excessive efforts to cure incurable conditions.
“This model incorporates research showing that clinicians are emotional beings, like all people, and these emotions strongly impact their patients’ choices,” Duberstein said. “Doctors hate to ‘give up’ on patients, so they often recommend treatments with very little chance of success. That won’t change until we improve medical education and the culture of irrational biomedical exuberance.”
“Irrational exuberance” is a term that economist Alan Greenspan famously used to describe investor sentiment in the lead-up to the dot-com crash, but Duberstein and his colleagues said it has long affected doctors and patients as much as it has affected Wall Street. They read of one-in-a-million cures and irrationally believe that they or their patients will be that one in a million – just as people who purchase lottery tickets think they’ll be the lucky winners.
Pointing out the irrationality of the choice doesn’t affect doctors any more than it affects lottery players. Indeed, the researchers believe, it affects doctors less because, unlike gambling, which is often portrayed as a vice, the struggle to preserve life is typically portrayed as a virtue. Motives to prescribe long-shot treatments are noble – to avoid death, save a life, “do all we can,” “fight a battle” and “never give up.” In this view, failing to prescribe long-shot treatments is tantamount to abandoning patients and, for patients, failing to try these treatments is tantamount to abandoning loved ones.
The authors, who also hail from Tulane, Rochester and Rowan, call for new approaches to clinical care and public education that will address the emotions that fuel useless treatments at the end of life. “At some level, every patient death is a potential source of shame for doctors and a source of guilt for surviving family members,” Duberstein said. “By changing the culture of medical education and broader cultural attitudes toward death, we can address the emotions and family dynamics that have prevented too many patients from receiving quality care in their final days and weeks of life.”
A do-not-resuscitate order (DNR) is a legally binding order signed by a physician at a patient’s request. Its purpose is to let medical professionals know you do not want to be resuscitated if you suddenly go into cardiac arrest or stop breathing.
People who are chronically ill often regard a DNR as a graceful way to leave the world on their terms. The details of a DNR are usually discussed at the time of admission to a hospital, nursing facility, or hospice program.
This article explains what resuscitation means, its side effects, and its survival rates. It also describes the rules that often frame do not resuscitate orders, how to make a DNR order work for you, and some of the ethical issues worth considering.
What DNR Means
You may have seen TV shows set in hospitals in which a patient in cardiac arrest gets cardiopulmonary resuscitation (CPR), comes back to life, and is back to their old self in no time. In fact, being resuscitated is not so simple and can be dangerous in its own right.
Procedures used to resuscitate someone include:
Chest compressions: When a person’s heart stops beating, the heart cannot pump blood to the rest of the body, including the brain and lungs. Pushing down on the chest repeatedly can help keep blood flowing throughout the body until heart function is restored.
Intubation: When breathing becomes difficult or impossible due to an illness or injury, a patient may be intubated. This involves inserting an endotracheal tube through the mouth and into the airway. The tube is then connected to a ventilator, which pushes air into the lungs.
Cardioversion: Cardioversion is used to correct abnormal heart rhythms, including arrhythmias and atrial fibrillation (also known as AFib). This may be done using a set of paddles to deliver an electrical shock to the heart or via medication.
IV medications: Medications that are sometimes used in the case of cardiac arrest include epinephrine, amiodarone, vasopressin, and atropine sulfate. These are “crash cart medications,” so named because they can be found on the wheeled cart that medical professionals use during an emergency resuscitation.
For a patient in cardiac or respiratory arrest, a DNR states that none of these tactics will be used.1
Respiratory vs. Cardiac Arrest
The difference between respiratory and cardiac arrest is that respiratory arrest patients still have a beating heart that’s pushing blood around the body. Cardiac arrest patients do not. In both cases, though, a patient is unconscious and not breathing. Respiratory arrest will always lead to cardiac arrest if nothing is done to treat it.2
Resuscitation Side Effects
It’s important to realize that even if you are successfully resuscitated, you may end up with significant physical injuries as a result. For example, because the chest must be compressed hard and deep enough to pump the blood out of the heart, it can lead to broken ribs, punctured lungs, and possibly a damaged heart.3
Those who are resuscitated may also suffer brain damage. This can occur due to lack of blood flow to the brain followed by abnormal cell activity when blood flow to the brain is restored. Generally, the risk increases the longer the duration of CPR.4
Resuscitation Survival Rates
Survival statistics for resuscitation vary widely, partly due to the fact that there are many variables involved, including the age and health status of the patient and whether CPR was performed in a hospital, where emergency support is available.
A 2021 review looked at research published from 2008 onward that focused on the outcome of CPR in patients age 70 and older following in-hospital cardiac arrest (IHCA) and out-of-hospital cardiac arrest (OHCA). Survival rates were 28.5% and 11.1%, respectively.5
Meanwhile, a Danish study found that 30-day survival rates among nursing home residents who received CPR after OHCA was only 7.7%6
Fatal Outcomes
It’s a painful irony that most people who suffer cardiac arrest are not in a hospital, nursing facility, or hospice program. About 70% of them are at home, and the vast majority (about 90%) die. CPR can double or triple a person’s chance of survival.7
Types of Orders
A DNR order is sometimes referred to by other names, though the directive not to resuscitate someone is the same. Two other names for these orders are:
No code: In a hospital, an order to withhold resuscitation is sometimes called a “no code” to distinguish it from a “full code” or “code blue,” both of which mean every effort should be made to resuscitate a patient.
Allow natural death (AND) orders: While a DNR order simply states that no attempts should be made to restart breathing or restart the heart if it stops, an AND order ensures that only comfort measures are taken.8 This would include withholding or discontinuing resuscitation, artificial feedings, fluids, and other measures that would prolong a natural death. These orders are typically used in hospice settings or elsewhere for terminally ill patients.
Discussion Matters
A study on DNRs and ANDs finds “healthcare providers should address the concept of natural death, provide comprehensive information, and help patients and families to overcome the barriers.”8
DNR Order Rules
The application of DNR orders varies from state to state, especially regarding out-of-hospital (meaning ambulance) care. Some states have standardized forms for DNR orders; if the order is not written on that specific form, it cannot be honored. Other states are less regimented and honor any type of clear DNR order.
Many states allow emergency responders to follow DNR orders written to other care providers, even if they aren’t written on standardized forms. For instance, in New York State, paramedics and emergency medical technicians are usually allowed to follow DNR orders written for the staff of a nursing home.
They also may be able to honor orders written for patients getting nursing care at home if the home care nurse has a copy of the DNR order in hand.1 Each state is different, and municipalities may differ within each state.
Regardless of the format or the venue, DNR orders almost always follow some of the same general rules; they have to in order to be valid. DNR orders must:
Be written by a doctor rather than verbalized.9 There are exceptions to this rule, such as an emergency medical service physician ordering an ambulance crew to withhold resuscitation via the radio or a registered nurse taking an order from an admitting doctor over the phone.1 Generally, there are safeguards for these exceptions to make sure the order is validated later.
Be signed by a doctor. In those cases where orders were taken by a nurse over the phone, states usually set a deadline for the doctor to physically verify and sign the order.
Include the patient’s name as well as the date. Depending on the state, orders may expire after a certain amount of time or there may be a deadline for the physician to follow up. Even if a DNR order doesn’t expire, a particularly old order may prompt a caregiver to revisit the decision.
Diligence on DNR Orders
A doctor writes a DNR order only after conferring with the patient (if this is possible), the patient’s appointed representative, or members of the patient’s family.
Making a DNR Order Work for You
If you opt for a DNR order, here’s what you can do to ensure your wishes are respected:
Keep the physical order on hand and display it wherever paramedics might find you. Make a point to tell them about the order when they arrive. It’s a good idea to have more than one copy available and displayed, as well as a copy to bring with you to the hospital.
If you are traveling, ask your traveling partners to keep a copy of your DNR order on them at all times.
Consider wearing a piece of medical jewelry to alert others of your intentions. MedicAlert Foundation provides jewelry designed specifically for patients with DNR orders. The foundation keeps a copy of the order on file and can fax it to anywhere in the world.
DNR Expresses Limits
A DNR order addresses the issue of CPR, but it does not include instructions for other treatments, such as pain medication or nutrition.10
Ethical Complications of DNR Orders
The inconsistent application of DNR orders means some patients may get less than optimal care once providers are aware of the presence of a DNR order.11 It’s important to remember that a DNR order is not an order to withhold all treatment. It’s an order not to resuscitate.
Even the mere mention of “DNR” can spawn a wide range of reactions, many of them emotionally charged. Discuss the options with your doctor and your family when everyone is calm and rational—and hopefully sooner rather than later.
Why a Patient Would Choose to Have a DNR Order
People with a terminal disease, such as advanced cancer or dementia, may not want CPR. A poor prognosis lowers the likelihood of survival, with a higher risk of heart, lung, and brain damage if resuscitation is attempted. Views on CPR within the medical community are ever-evolving too, with some professionals revisiting guidelines on how and why resuscitation should be considered.12
Summary
A do-not-resuscitate order instructs healthcare providers to refrain from cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or if the patient’s heart stops beating. It can also pose a dilemma, but one worth considering, especially in the context of your health (or the health of a loved one).
Here’s why: CPR requires the heart to be compressed hard and deep enough to pump the blood out of the heart. As such, it can lead to broken ribs, punctured lungs, and possibly a damaged heart. Those who are resuscitated may also suffer brain damage.
These actions may be too much for someone in frail health. If you wish to explore a DNR order, it’s important to know that the orders vary from state to state. Be sure to investigate the rules in your state before proceeding.
A Word From Verywell
Understandably, loved ones often have difficulty talking about a DNR order and may feel they are “giving up” on their loved one. You can take charge of your end-of-life plans while you’re still able to do so, and investigate the rules governing DNR orders in your state. Keep in mind that even if you get a DNR order, you have the right to change your mind, revoke the order, and request CPR.10
Frequently Asked Questions
How do you get a do-not-resuscitate order?
You can get one from a hospital, nursing home, or hospice program. Most states have standard forms that you can download online.
Who can sign a do-not-resuscitate order?
A doctor must sign a DNR order with the consent of the patient or the patient’s healthcare proxy or designated power of attorney.9
Can a DNR be ignored?
The Patient Self Determination Act (PDSA) requires that the wishes of an individual and any existing advance directives be honored in the United States. However, providers do occasionally disregard a DNR due, for example, to lack of communication.13 It’s also possible that an existing DNR is honored but providers fail to confirm with a patient or their representative.14
