The failure of doctors to talk to their patients about end of life decisions perplexes me.  This gap in vital communication results in poor care, uncontrolled pain, futile treatment and death in hospital or nursing home, where no patient wants to be.  Certainly, for oncologists, every patient they see is concerned about dying and by not opening the topic it leaves each isolated.

I have generally taught my students that this failure results from a “culture of cure.”  Doctors and patients focus so hard on treatment, whether its fighting cancer, heart disease or even Alzheimer’s, that they ignore the reality that all life eventually ends.  Lost is the opportunity to plan for end-of-life needs, which can deny the patient and family a gentle passing.  Doctors falsely see death as the great enemy, instead of suffering and disease. Often the illogical emphasis on cure at any cost is key to poor end-of-life communication.

Recently I have been considering a slightly different perspective on this problem, based in the works of psychoanalysts, Sigmund Freud and Otto Rank, and how they saw human personality.  They proposed that man is, in a sense, a demi-god.  Half god and half-animal.  By god, they did not mean infinite and all-powerful.  Rather they observed that man has characteristics that are god-like and therefore unique among all creatures.

These god-like traits include the ability to imagine something in the abstract and then make it happen.  For example, one can dream of a two-floor red house, and then build it or envision a five layer chocolate cake and then bake it. Second, man can, in his mind, travel to any time in the future or the past, including the world before or after his life. He can also move his mind to any place in the Universe that he imagines.  Finally, at the most basic level, man is self-aware of his own existence and mortality. As we understand life on this planet, these are remarkable and special god-like abilities.

On the other hand, man is an animal. He is born, grows, can be injured, ages, and gets sick.  He eats, has sex, shivers when a frigid wind blows and has to move bowels and urine. Finally, eventually, the animal that is man dies.

Psychoanalysts believe that emotional trauma in human life is because man is not really a god and is something more than just an animal. He is a demi-god and being a demi-god is hard.  He can create and appreciate goodness, enjoy the wonder and awe of each day; teach, learn, and dream, but at the same time, he can see into the future and knows his fate.  His mind can conceive flying through the air, staying awake for days or living to be 10,000, but he is denied by the limitations of his flesh.  This results in life long stress and in order to cope man uses various psychological strategies, including repression and denial, to focus on each day and each moment and not go truly mad.

When someone becomes ill with a life threatening illness such as cancer, their ability to deny the animal part of their existence may collapse.  Suddenly they are less god than ailing beast. This can cause terrible anxiety, confusion and depression, as their personality is threatened by physical deterioration and critical coping mechanisms fail.  At these critical times, the support of a physician who understands the core balance of the human condition can be most valuable.

However, it seems to me that doctors do not talk about death to their patients, not because they do not care, but because doctors do not know how to deal with the god, they only understand the animal. They are scientists who base decisions on anatomy, physiology and chemistry, which are the building blocks of the biological body.  Even psychiatrists talk about chemical imbalances causing depression.

Doctors receive almost no training on the mechanisms, drives and weaknesses of the mind, where-in lies the god-like powers of man.  Like veterinarians who are unable to talk to their patients, doctors continue to focus on the body and despite their best efforts, do not offer desperately needed connection and support.  Paradoxically in their efforts to heal, they drive the body to a point that causes unneeded suffering.

As long as the sole focus of physicians is on the animal body of man, they will have great difficulty having the kind of vital discussions needed to assist their patients at the end-of-life.  On the other hand, this offers a nearly infinite opportunity to reach out to the hearts of their patients. By connecting and supporting the primary emotional needs of the demi-god soul, physicians can help patients to live better.  This will require not only physician awareness of the possibilities, but training about drives and coping mechanisms.  Medical education needs to recognize that by understanding the primal needs of patients, and the complex psychic battles which each of us face, doctors can help provide quality life, even at its end.

Testimony of Mickey MacIntyre
Chief Program Officer, Compassion & Choices
Before the Institute of Medicine’s Committee on Transforming End-of-Life Care

Good afternoon. I am Mickey MacIntyre, Chief Program Officer for Compassion & Choices, a national nonprofit consumer organization dedicated to improving care and expanding choice at the end of life. I appreciate the opportunity to address the committee today.

Compassion & Choices’ central tenet is that Americans are free to choose how they live – so it follows that when the time comes, we are free to choose how we die. This private, personal decision belongs to all Americans – free from government interference. U.S. courts around the country, including the United States Supreme Court, have upheld this right.

Today, I want to address one specific problem: unwanted medical treatment. Patients have the right and the responsibility to guide their own health care throughout their lives, with their trusted health care professionals. Many Americans give thoughtful consideration to medical decisions that may need to be made if they are injured or debilitated, and they articulate their decisions in advance directives.

Congress passed the Patient Self-Determination Act (PSDA) in 1990 to reinforce an individual’s right to determine the course of his health care. This Act amended Medicare and Medicaid law to require providers to follow policies and establish procedures with regard to advance directives. The PSDA established that if these policies are not followed, the Secretary of Health and Human Services (HHS) may decide that the provider is ineligible for payment through Medicare and Medicaid.

President Obama reasserted the importance of respecting patients’ rights in a 2010 memorandum to HHS asking the agency to, “ensure that all hospitals participating in Medicare and Medicaid are in full compliance with [these regulations]…[t]hat all patients’ advance directives…are respected, and that patients’ representatives otherwise have the right to make informed decisions regarding patients’ care.”

Nevertheless, many patients’ decisions are overridden or ignored in the weeks and months before their deaths. This happens for a variety of reasons and can lead to invasive and fruitless testing, needless suffering, unrelenting pain and a prolonging of the period before death. Patients are tethered to monitors and machines despite their determination to reject unwanted treatment and desire to die at home in the embrace of loved ones.

A new study published in JAMA found that between 2000 and 2009, treatment in intensive care units in the last month of life increased from 24% to 29%. The accompanying editorial concluded, “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.” Compassion & Choices could not agree more.

Policy makers can and should provide both the carrot and the stick to ensure that patients’ wishes are honored: financial incentives for honoring advance directives and financial DISincentives for disregarding patients’ expressed wishes.

The Centers for Medicare and Medicaid Services (CMS) should deny payment to providers where there is clear evidence that specific treatments were unwanted — similar to policies where unnecessary treatment is provided.
The Justice Department is investigating and taking legal action against hospitals and doctors groups when instances of unnecessary treatment are exposed. The same due diligence should be trained on unwanted medical treatment. It is always unnecessary and should be considered a never event.

The explosion of the aging population coupled with the nation’s financial and moral commitment to providing health care to an ever-increasing number of Americans reveals that the scourge of unwanted treatment should be an urgent priority for this committee. Among the next steps Compassion & Choices recommends are:

Initiate and improve the quality of conversations among health care professionals, patients and families about end-of-life decisions, including:
1. reimbursing medical providers for participation in advanced care planning with patients and their families well in advance of illness or before facing end of life;
2. providing financial incentives and training to encourage medical providers to offer all the information and counseling necessary for decision making when securing informed consent;
3. ensuring that the full range of medical care and treatment decisions, including curative care, palliative care and medical assistance in dying, are freely available to patients without institutional or reimbursement barriers.

Further CMS should:
1. exclude from covered services and reimbursement any treatment that contravenes an adult patient’s informed health care decision;
2. track complaints where patient wishes were ignored and ensure that the survey and certification processes for providers require attention to patient’s advance directives;
3. revise billing forms to have providers indicate that care was rendered in conformance with patient’s advance directive and informed consent.

I thank you for the opportunity to testify today, and I will be happy to answer questions or provide written follow-up information.
Thank you.

Download Our Unwanted Medical Treatment Literature

Unwanted Medical Treatment Toolkit

Unwanted Medical Treatment Issue Brief

Submit Your Story of Unwanted Treatment

Have you had an experience involving unwanted or unnecessary medical treatment. If so, please take a moment and tell us your story in an effort to help ensure that all patients have the right to guide their own health care decisions throughout their lives. Please follow this link to our stories submission page.

The bullet that Larry Robert Broman used to kill himself went clean through his head and into the wall.

No one had expected him to do it. Not his ex-wife, who had remained close to him. And not their two grown daughters.

It happened early on the morning of Oct. 21.

“I heard a noise and ran down the hall,” said his oldest daughter, Heather O’Hara, who forced her way into the back bedroom of her Riverside home, where she’d been caring for her terminally ill father. “His hands went limp. The gun was in front of the sofa and he was sideways.”

Broman, a 65-year-old born-again Christian and former Air Force flight mechanic, had grown increasingly miserable about the indignities he suffered as lung cancer spread through his body. O’Hara suspects he had hidden the 9-millimeter handgun in the folds of the sofa and waited for his moment. A visiting hospice aide, who had stepped into the next room, said Broman’s last words were, “Lord, please forgive me.”

I’ve learned a lot this year about that appointment that awaits us all, some of it from personal experience. In February, my father died, and in August I nearly followed. My mortality wake-up call came in a hospital after knee surgery, when I flat-lined because of a heart arrhythmia and was resuscitated by a nurse.

In response to columns about those events, stories have streamed in from people who are running out of time themselves, or enduring the pain of watching loved ones fade. The deaths they face are as different as the lives they’ve lived, but a steady refrain runs through their emails and letters.

People want more control in the end. They want to be in charge of one last thing.

These people speak a common language, linked by a desire to have lethal, doctor-prescribed medication as a legal option, as do residents of Oregon and Washington. When they can’t feed and bathe themselves, when all privacy is lost, when they become a burden to loved ones, they want an exit. They live in fear not of death, but of languishing interminably without purpose or joy.

I’ve felt privileged to be let into their lives.

The patch job is still faintly visible on the wall of the bedroom where Broman took his life. A company called A-1 Clean the Scene was called in to eliminate the bloodstains.

The agony hasn’t waned for his daughters and ex-wife, who wish they had sensed the full depth of his desperation. There’s anger, too, along with the guilt. Why couldn’t the hospice staff have done a better job of easing his pain? And why aren’t there humane options when the suffering has become too great?

“Why couldn’t the doctor here have offered … an option saying, ‘When you get sick of this, Larry, all you have to do is mix this up and drink it?’” asks Rebecca Beal, Broman’s ex-wife. “Part of the horror of all this is thinking of that moment … knowing this was his only way out … when he actually took the gun and had to pull the trigger.”

Amy Brackett, Broman’s youngest daughter, said that when a pastor visited the house not long before the shooting, he asked her father what his one prayer would be.

“I want to go to heaven, and I want to be with God,” her father said. “But I don’t want to have to go through this to get there.”

Talking about death with dignity is a charged subject. I’ve heard criticism from people of faith who say life and death should be left in God’s hands. But Larry Broman’s daughters and ex-wife, all of them Christians, feel differently. They say they’ve begun advocating on their Facebook pages and elsewhere for better alternatives to prolonged and painful deaths.

O’Hara points out that those who say death should be left in God’s hands often take drastic steps to prolong their lives using ventilators or feeding tubes. “They condemn you for taking your life, but they don’t condemn you for being artificially kept alive.”

At the funeral, the pastor told mourners that Broman’s last act was not a selfish one. He was in a burning building, and he jumped.

“God doesn’t judge you on your last act on earth, but on how you lived your life,” Beal said.

Beal said that Broman’s death was particularly hard on her current husband, Sam, a doctor who had grown close to Broman, and has stage four cancer himself. “I don’t know what we’re facing. I have no idea,” a tearful Beal said. “I’m trying to figure it out, but I’ve learned a lot. I’ve learned about what I’m not going to go through, and I’m an advocate for people to have a choice at the end.”

A house of sorrow

“Recipe for death.”

Those were the words in the subject field of the e-mail from Fran Measley.

“Dear Steve, as an 88-year-old caregiver of my husband for many months, I do not want my children going through the same experience with me. Would you send me the name of the concern that sells the recipe for death that you mentioned in your column…. My husband and I agreed that when we are old and infirm, death is a friend.”

By the time I responded, Donald Measley, an Air Force pilot who flew supplies into postwar Germany as part of the Berlin airlift, had died. I apologized for not getting back to Fran sooner and also explained that I hadn’t actually written about a specific “recipe for death.” I’d written about Compassion & Choices (http://www.compassionandchoices.org), a nonprofit offering end-of-life counseling nationwide. The organization encourages terminally ill, suffering patients to discuss their wishes with their doctors, but in some cases offers advice on possible combinations of legally obtained medication that when properly self-administered, can hasten death.

Measley, a retired high school English teacher, clarified something, too. It wasn’t her husband she was seeking help for. “I wanted it for me,” she said. “I don’t want my children going through what I just went through.”

Her husband lived a good life but did not die a good death, Measley said, explaining how she fed him, cleaned him, picked him up when he fell, and patiently endured his demented outbursts. The last two years were particularly sad, Fran said, and her husband was miserable. Once, he asked Fran who she was. When she said that she was his wife, he called her a liar.

“Honey,” he said one day, “I’m in the bathroom and I don’t know how I got here.”

Peripheral neuropathy left him shuffling along, leaning against walls and clutching furniture.

“He asked our son to shoot him, then said, ‘I can’t get any better, and this can’t go on.’ Our son looked at him and said, ‘I won’t do it.’”

When I visited Measley in the Santa Barbara home she shared with her husband, she vividly recalled the day she came upon him, alone in the den.

“He had a little pistol about like this,” she said, holding her fingers a few inches apart. “He didn’t say anything. He looked up at me.”

Measley hid the gun, but wished there were a clean way out for her husband. If this were Oregon, I asked, would he have asked his doctor for a prescription?

“Yes. He would have been happy to.”

Don Measley died Oct. 15 at a hospice center. He was 90. A month later, Fran’s 55-year-old son-in-law died in a motorcycle accident.

“This is a house of sorrow,” Measley said.

A good time to go

If Kitti Ford-Scholz, 77, was pretending not to fear death, it was an Oscar-winning performance. We sat on the patio of her red, wood-frame home looking over Oahu’s Kaneohe Bay, and she told me about the funeral she’d thrown for herself in late October.

“It was a celebration of life,” she said. “It was a bunch of people sitting around talking, and it was lot of laughter. Just a happy time. The lady who may be buying my house came in from Washington. A friend of mine who has a titanium spine, and is 85, flew in from Illinois. I got to see all of these people who have been so much a part of my life.”

The slender and elegant Ford-Scholz was nonchalant about how terribly sick she was.

“I just found out Oct. 5 that everything was shutting down, that I have cancer everywhere. My biggest problem is that the bones are just riddled…. It’s wrapped around my spine, I’ve got it in thousands of little nerve endings. My lungs. My ribs. My heart. My brain. And here I am. I’m not supposed to be enjoying life, but I am.”

It’s been a rich life, she said, with three children and an entrepreneurial spirit that led her to start her own skin lotion company. Why end it strapped to a bed or tangled up in wires and tubes?

In that spirit, she rose gingerly but bravely, and we walked to a car that was waiting to take her to a pharmacy for a prescription written by Dr. Robert Nathanson. Nathanson and an advisory council of physicians have been pushing for Hawaii — where polling suggests people strongly support death with dignity — to offer more end-of-life choices. They argue that doctors can legally prescribe potentially lethal dosages of morphine in the service of pain relief, so they’re prepared to test whether there is enough wiggle-room in the law to allow them to legally offer more direct aid in dying to terminally ill patients who request it.

We parked the car and Ford-Scholz walked into the store and up to the pharmacy window alone. It seemed cruel that, in such a moment, she couldn’t have a friend or family member with her for support. But she wanted to avoid any chance that someone would be prosecuted for participating in her death.

Driving back home, I saw the first hint of hesitation on Ford-Scholz’s part as she held the little white bag with sleeping pills inside.

“I’m not sure how strong I am, but I think I’m strong enough to take it,” she said.

We opened the bag and inside were 90 capsules.

“I’m supposed to pull 60 of them apart and dump the capsules into applesauce or chocolate pudding or something,” she said. “I don’t know if I can eat four ounces of something. That bothers me. There are still a lot of ifs.”

In Oregon and Washington, many people who have met the requirements for aid in dying don’t end up using the medication. But they say they’re comforted knowing they have the option, and Ford-Scholz said the same.

Earlier in the day, she told me she was tired of hearing from people promoting one remedy or another for her health problems.

“I keep trying to tell people….I don’t want it, leave me alone. I don’t want it, and besides, the economy in this country is so bad, and in other countries, too, I’m kind of glad I’m leaving. I think this is a good time to go. I think you guys have your hands full.”

On Dec. 6, Ford-Scholz died at home, peacefully, with two daughters at her side.

She was too incapacitated in the end to use the prescription.

The most humane option

In September, a Northern California man named E. T. Rulison wrote a letter that was passed on to me by a friend of his.

“Dear Californians planning to live out your life in this state:

“I am a physician. Since the 1940s I have been deeply dedicated to quality of life for my patients and loved ones. I am now 97, and can feel life ebbing away steadily… The majority of people I have cared for at the end of their lives desperately have wanted the dignity of ending their lives as they lived their lives, with some influence over their conditions…

“I have … friends who saw no better choice for themselves in their … suffering but to end their lives ungraciously, by suicide. The loved ones left behind were devastated by the consequences… I am encouraging you to begin conversations about the end of life choices such as are available for the dignity of citizens in other states.”

Rulison lives with his wife in Cameron Park, on the eastern flank of Sacramento. Jean is 87.

“I robbed the cradle,” said Rulison, whose mind is still sharp even as his body gives out.

“I don’t think he’s forgotten anything he ever knew,” his wife confirmed.

And there’s a lot to remember.

Rulison worked as an anesthesiologist with the Army Medical Corps in World War II, treating wounded soldiers in the 51st Evacuation Hospital in Europe. He went on to a long career as a general surgeon, then retired and began traveling the world with Jean as a scuba diver and underwater photographer. Together, we watched an old “American Sportsman” episode in which Rulison and “Jaws” author Peter Benchley dive in the Sea of Cortez to study the schooling patterns of hammerhead sharks, and in one scene, Rulison rides a manta ray with an 18-foot wingspan.

These days, the big adventures are history, and Rulison gets around the house with a walker and cane. He has survived a triple bypass, and about 20 years ago, oral cancer spread to his neck. Part of his face was removed, chewing became impossible, and he has existed on pureed foods for two decades.

But he enjoys reading, loves his wife’s company, and he has a new cause. Death with dignity. Legislative and ballot proposals have failed previously in the state, but Rulison hopes Californians can be educated to view the option not as suicide, but as an acceptable personal choice.

“I don’t want to sit around a nursing home and not know what day it is, or have people come and see me and I don’t recognize them,” Rulison said. “To me, that’s not living.”

When he decides he’s ready, he will open a safe that contains a vial of methadone, a syringe and a needle. He’s been holding on to that drug since he shut down his medical practice in 1976. He will squeeze one shot into each hip, he said, find a comfortable place to lie down, and that will be it. If he is too feeble to manage that on his own, he has arranged for someone to help.

I asked why he would do it that way rather than starving himself. Not eating or drinking will certainly do the job, Rulison said. But why shouldn’t we all have the most humane option available to us?

“It’s quicker and neater, I think, to do it my way. I’m just eliminating two weeks of starvation. It gets messy toward the end. You get so weak you can’t take care of yourself.”

There is no trace of fear in his voice.

“I have a rather pragmatic view of life,” Rulison said. “To me, we’re born, we live, we die and we’re recycled into new life.”

In his letter to California, Rulison ended with this:

“Perhaps these last encouragements before I myself die with dignity will fall on listening ears.”

Recounting her father’s struggle with cancer was difficult for the young woman, even several years after his death. He’d endured first surgery and then chemotherapy and radiation, she told me, and the cancer had gone into remission. He was thrilled, but the aggressive treatment left him with chronic, debilitating pain. Once active, he struggled to get around in his own home.

“It wasn’t the cancer that got him,” the daughter said. “It was the pain.”

Her father had turned to all of his doctors, with little relief. His surgeon had looked at his operative wounds, pronounced them well healed, then stated that they were in no way responsible for his disability. Both his cancer doctor and his radiation doctor congratulated him on being in remission but then declined to prescribe pain medications since they were no longer treating him and couldn’t provide ongoing follow-up and dosing guidance. His primary care doctor listened intently to his descriptions of his limitations, but then prescribed only small amounts of pain meds that offered fleeting relief at best.

“I’ll never forget what my father had to go through,” she said, weeping. “I wouldn’t wish this on anyone.”

I wish I could have reassured her that her father’s case was unusual. Sadly, according to a new study in The Journal of Clinical Oncology, a significant percentage of cancer patients continue to suffer from pain as her father did.

Researchers who surveyed more than 3,000 cancer patients found that nearly two-thirds said they were in pain or receiving pain medications. Roughly a third felt they needed more painkillers to fully treat their symptoms.

A month after the patients saw their oncologists, the researchers again asked the patients about their pain. Instead of showing improvement, the percentage of patients who continued to be in pain remained unchanged.

Their pain, in other words, had not been treated.

The findings are a sobering echo of research from nearly two decades ago that revealed that more than 40 percent of cancer patients did not receive adequate treatment for their pain. While patients were reluctant to ask for relief or to take prescribed pain medications, the researchers found that physicians were just as unwilling to prescribe the needed medications. Nearly a third of cancer specialists waited until the patient was only months away from death before offering maximum pain control.

These results were eye-opening for the oncology community and helped fuel a firestorm of initiatives in the late 1990s and early 2000s aimed at improving how doctors address pain in general. State medical boards began to mandate that all doctors take pain management courses before renewing their licenses to practice. In a move presaging today’s checklists, pain was declared a patient’s “fifth vital sign,” a body function to be assessed after temperature, heart rate, respiration rate and blood pressure. And hospital systems, regulatory agencies and entire medical specialty organizations, confident that better education and more explicit efforts were all that was needed, heralded the various proposals as the new norm.

Unfortunately, that new norm turned out to be not so different from the old.

“It was a ‘Groundhog Day’ moment, certainly not a feel-good one,” said Dr. Michael J. Fisch, lead author of the recent study and professor and chairman of the department of general oncology at the University of Texas M.D. Anderson Cancer Center. While there had been a slight improvement in the number of patients whose pain was controlled, nearly a third of patients were still inadequately treated.

Some of the disappointing results may have been owed to physician and patient fears of narcotic addiction or concerns over side effects. But the main reason, Dr. Fisch and his colleagues believe, is that early initiatives simply underestimated the complexity of good pain management.

To optimize pain treatment, physicians need to carefully navigate the exam-room interaction, ask open-ended questions and empathize with patients who, in some of the most challenging cases, come from backgrounds very different from their own and describe pain and its effects on their lives in unique ways. A patient from China, for example, might describe her leg as feeling “sour” rather than painful. A man from a community that values stoicism might mention that he is now confined to his bedroom but not volunteer a description of sharp, 8-out-of-10 knifelike pain that he now suffers from intermittently.

Not surprisingly, minority patients in the study tended to have more difficulty getting adequate pain control.

Cancer patients who were living with the disease were also less likely to have their pain adequately controlled, compared with others. The current reimbursement insurance system offers little incentive to any single provider to take on responsibility for all of their complex needs. Oncologists may no longer be interested in seeing or caring for them because they have finished their cancer treatment and are doing relatively “well.” Primary care providers may not be comfortable taking on the intricate follow-up schedules required to detect recurrent cancer.

And many doctors may simply hesitate to take on the heavy responsibility of monitoring a patient’s ongoing narcotic use, the complicated challenge of figuring out whether the dosage is sufficient while worrying about the potentially lethal complications of prescribing too much, or creating an opportunity for abuse.

“A doctor can’t help but wonder, ‘Am I going to be the one responsible for refilling these prescriptions until the end of this patient’s life?’” Dr. Fisch said.

While this study offers important follow-up data to work conducted two decades earlier, it also represents a growing interest among researchers in the symptoms of cancer, particularly for the growing number of people who are living longer than patients from even a decade ago. Thanks to advances in cancer treatment, more than half of all cancer patients now live five years or more past their initial cancer diagnosis. “We need to be better prepared for this best-case scenario,” Dr. Fisch said, because it’s one that can include not only more years of life but also persistent fatigue, arthritis, hot flashes, depression, sleep problems and chronic pain.

In the case of chronic pain, one thing is clear: Adding assessments to a checklist of vital signs and mandating more physician education aren’t enough.

“Pain is all about the doctor-patient relationship and taking the whole person into account,” Dr. Fisch said. “Those things are not quick fixes.”

Major and minor themes have been identified by emergency nurses who often provide end-of-life care in the emergency department setting, according to a study published in the September issue of the Journal of Emergency Nursing.

Renea L. Beckstrand, Ph.D., R.N., of the Brigham Young University College of Nursing in Provo, Utah, and colleagues surveyed 1,000 emergency nurses for suggestions regarding how to improve EOL care in the emergency department setting. Overall, 230 nurses provided 295 suggestions for improving care. The researchers identified five major themes and four minor themes. The major themes, which were mentioned by 20 or more respondents, included allowing emergency department nurses to have more time to care for dying patients; allowing family to be present during resuscitation; and providing more comfortable patient rooms, privacy, and family grief rooms.

Minor themes, mentioned by 16 or fewer nurses, included increased ancillary service involvement; pain management and minimizing suffering; family education; and honoring patients’ desires and wishes. “Large numbers of patients die in emergency departments in the United States every year. Caring for those who are dying in emergency departments is difficult because these highly technical departments were primarily created to save lives,” the authors write. “Implementing changes based on emergency nurse recommendations may dramatically improve EOL care for dying patients and their family members.”