End-of-Life Choice, Palliative Care and Counseling

Posts Taggedpalliative care

Dr. Marcia Angell: Ballot question to allow physician aid in dying respects patient wishes

By Dr. Marcia Angell
July 31, 2012

On Nov. 6, in addition to weighing in on the crucial political contests, Massachusetts voters will decide whether physicians may provide a dying patient with medication to bring about an earlier, more peaceful death if the patient chooses. On the ballot will be a Death with Dignity Act that is virtually identical to the law that has been in effect in Oregon for many years. If it passes, it will legalize physician-assisted dying, sometimes called aid in dying. (These terms are favored over the older term, physician-assisted suicide, because they distinguish it from the typical suicide in which a healthy person chooses death over life; here the patient is near death from natural causes anyway, and merely chooses the timing and manner of an inevitable death.)

There are a host of safeguards. First, the Act applies only to adults who are able to make their own decisions. It cannot be used through advance directives, nor by people with limited decision-making capacity. Second, the patient must have a terminal illness, with a life expectancy of no more than six months, as determined by at least two physicians. In addition, the patient must make two oral requests for medication to hasten death, separated by at least 15 days, and one written request, with two witnesses. By definition, the patient must be capable of swallowing the medication — usually barbiturates dissolved in a full glass of liquid — which ensures that it is voluntary. The law does not permit euthanasia, that is, the injection of a lethal medication by a physician or anyone else. If a physician believes a psychiatric condition is impairing the patient’s judgment, the doctor must refer him or her to a psychiatrist or other counselor. No physician is required to participate in assisted dying; he or she may refuse for any reason whatsoever. This is a choice, not a requirement, for both patients and physicians.

Last December, at its interim meeting, the Massachusetts Medical Society reaffirmed its long-standing opposition to physician-assisted dying — finding it “inconsistent with the physician’s role as healer and health care provider,” in the words of President Lynda Young. I will here discuss this and other arguments often made by physician opponents, and explain why I believe they are wrong, both medically and ethically.

Physicians are only healers. This sees the physician’s role too narrowly and abstractly. Yes, it is all very well to say that physicians should be healers, but suppose healing is not possible? When death is imminent and dying patients find their suffering unbearable, then the physician’s role should shift from healing to relieving suffering in accord with the patient’s wishes. This is not a matter of life versus death, but about the manner of dying, and it’s not primarily about doctors, but about patients.

Physicians should never participate in taking life. Doctors who believe this do not usually object to withdrawing life-sustaining treatment, such as a mechanical ventilator, if requested by a patient or proxy. But they believe that writing a prescription is more active, hence unethical. Here again, this argument focuses too much on physicians and not enough on patients. If we look instead at the patient’s role, we see that assisted dying requires purposeful actions on the part of the patient, whereas a mechanical ventilator could be disconnected from an unconscious patient. Even some doctors who believe assisted dying is sometimes warranted think they should not write the prescription, but outsource it to someone else. This is a form of abandonment, in which doctors prize their self-image above the patient’s needs.

Patients who request assisted dying may be suffering from treatable depression. The diagnosis of depression is difficult because the symptoms overlap with those of terminal illness, and dying naturally produces sadness. Moreover, there are no good studies of the effectiveness of therapy in this setting. Nevertheless, the act requires physicians to refer patients for counseling if they believe a patient’s judgment is impaired by depression or another psychiatric condition, and that is a common reason doctors give for denying requests in Oregon.

Permitting assisted dying will put us on a “slippery slope,” leading to abuses, such as using the law for patients who are not terminally ill or who are especially vulnerable — for example, the uninsured. The best answers come from Oregon, where the law has been used sparingly (most requests are refused) and exactly as intended. (For details, see the Oregon Health Authority’s Division of Public Health reports.) Assisted dying there has accounted for 596 deaths over 14 years, only 0.2 percent of all deaths in the most recent year. Most patients were suffering from metastatic cancer, and the prognosis was clear. Far from being vulnerable, they were relatively affluent, well-educated, and well-insured, and nearly all were receiving hospice care at the time of their request. About a third who requested medication did not use it, but kept it at hand because it provided peace of mind. No law works absolutely perfectly, but this one seems to come about as close as possible.

Good palliative care can relieve all suffering, so permitting assisted dying is unnecessary. Probably most dying patients, even when suffering greatly, would choose to live as long as possible. That courage and grace should be protected and honored, and we should put every effort into treating their symptoms. (Palliative care in Oregon is among the best in the country.) But not all suffering can be relieved. Most pain can, but other symptoms can be harder to deal with — symptoms such as weakness, loss of control of bodily functions, shortness of breath, and nausea — and the drugs to treat them often produce side effects that are as debilitating as the problems they treat. Even worse for many patients is the existential suffering. They know that their condition will grow worse day after day until their deaths, that their course is inexorably downhill, and they find it meaningless to soldier on. Why should anyone — the state, the medical profession, or anyone else — presume to tell someone else how much suffering they must endure while dying? Doctors should stand with their patients, not against them.

Palliative Care Deserves Physicians’ Attention

By Joe Cantlupe
HealthLeaders Media
July 19, 2012

Do you know about palliative care, the comprehensive treatment for the very sick, but not for those who are dying?

Some doctors do not.

As a physician, do you feel it is a sign of “failure” on your part, when longtime patients have grown tired of treatments, and simply want comfort as they approach end of life?

Some physicians think it is.

As the population ages, and hospitals prepare to care for more chronically ill patients, more physicians should get acquainted with palliative care, to not only to improve patient care, but as a potent cost-savings tool.

With palliative care, hospitals can avoid needless tests and procedures, in part, because patients no longer want them. Palliative care is the comprehensive treatment focused on pain, symptoms and stress of serious illness, or even spiritual assistance for the very sick. Some studies have shown it can extend life.

Still, although not widely practiced, palliative care is becoming part of the discussion among healthcare leaders to improve care, especially for the elderly.  In May, a panel of healthcare leaders met in Chicago as part of a HealthLeaders Media Breakthroughs session that focused on improving readmission rates for hospitalized cardiac patients. The talks veered off into other topics, among them palliative care, as well as hospice, or end of life care.

“Obviously, it’s probably one of the most complex topics we could discuss,” said Greg Johnson, DO, chief medical officer for Parkview Health, Ft. Wayne, IN, during the panel discussion.  ”I also think that when we talk about end-of-life care, we need to approach it with more curiosity and information than with judgment and direction,” Johnson says.

Although there were almost no palliative care programs in America a decade ago, about 63% of hospitals with 50 or more beds have a palliative care team, according to the Center to Advance Palliative Care. It is likely that palliative care is going to expand, but it is still largely misunderstood, even among physicians.

For those patients who are weary of dealing with their pain, tired of medical procedures, and who want to live their days as fully as possible, palliative care may be the answer. In cases of people even more seriously ill, and possibly closer to death, hospice may be the correct treatment option. Too often, physicians don’t pose the question: Patient, what do you want to do?

Bruce Robinson, MD, MPH, director of the chief of geriatric medicine at Sarasota Memorial Hospital in Florida told me how, too often, physicians may articulate their hopes for patients, even when it’s a terrible illusion.

“The patients want to keep that hope,” he says. “The doctors want to just do what they do and that’s how they make their living, so they are happy when a patient says, ‘I want you to do something. I want to pretend I’m not dying.’ So stuff gets done.”

Other physicians may not endorse palliative care, or even hospice care, because they wrongly feel those programs may reflect poorly on their own work, healthcare leaders tell me. Some doctors may see those programs as symbolic that they have given up hope, that all those procedures, all the plans for their patients, were for naught. That’s too bad.

At the Breakthroughs session, panel member Johnson raised the point that physicians “feel like it’s a failure” to have such discussions involving palliative or end of life care. That shouldn’t be the case, he says. “We have to be willing to follow-up what the patients’ goals are,” Johnson says.

“Because what I’ve seen too frequently is the patient will have stated their goals of care and then somewhere that gets overwritten. And we see the 94-year-old patient that didn’t’ want anything who is on on a ventilator for a month. And that’s a very sad thing.”

The essential question for palliative care is “how do we manage symptoms so the patient can feel as good as possible, and have optimal life experience? The conversation in chronic care management goes a long way,” said panel member Kathleen Martin, RN, vice president of patient safety and care improvement for Griffin Hospital, Derby, CT.

While palliative care is increasing, its generally poor name recognition, among the public, as well as among healthcare workers, including physicians, is a significant obstacle, Timothy E. Quill, MD, a professor of Medicine, Psychiatry and Mental Humanities at the University of Rochester School of Medicine and Dentistry tells HealthLeaders Media.

“Palliative care has a name recognition issue,” Quill says. “About 20% of the public may know what it is, but once people and patients learn what it is, their question becomes: ‘why didn’t I get that earlier, why isn’t that the care for all seriously ill people?’ Hospice care has a higher name recognition, but it’s for people at the end of life,” he says.

While there is some uncertainty what exactly is palliative care, some healthcare facilities are offering both palliative and hospice care programs, which they see as crucial to improve care among the elderly, and offering as many options to them as well as their families.

The Hospice of the Valley, in San Jose, CA, is one of those facilities that serves both populations.  There is an increasing need for mental health or community-based programs to assist the patients, says Sally Adelus, president/CEO of the Hospice of the Valley, told HealthLeaders Media.

Because the scope of care is evolving for the elderly populations, it’s important that physicians work closely with families to consider palliative or hospice care options. The Sutter Health system, a network of doctors and hospitals in northern California, has an advanced illness management program that partners with patients and families to better coordinate care for palliative patients and also consider end of life options, says Brad Stuart, MD, chief medical officer at the Sutter Care at Home in Fairfield, Calif.

Stuart says it’s important that both disciplines (palliative and hospice) “collaborate for the best outcomes we can have.” Much of the focus for improved patient care, especially those in palliative care, is moving toward ” focusing on goals of patients in their own lives.”

Even in the hospice and palliative care world, however, there are “turf” struggles, as in many other areas of healthcare, he says. “We’re trying to change the medical culture. It’s an uphill battle,” Stuart says.  Physicians gaining knowledge about such care is a start, he adds.

Better Preparation Could Improve the Quality of Death–and Life–for Terminal Patients

By Marissa Fessenden
Scientific American
July 9, 2012

Terminally ill patients in the U.S. these days face expensive care and prolonged declines. And many hospitals lack a designated palliative care team, which focuses on patient comfort at any point in the life cycle but becomes more critical at the end. In terms of care, the solution to our medical system’s woes might be as simple as a conversation about how we die.

“Many clinicians are afraid to talk about prognosis—how long a patient may have to live,” says Alexander Smith, a palliative care physician at the University of California, San Francisco. “Talking about death in America is forbidden, a taboo topic.”

Voices clamor to be heard in the discussion about end-of-life care. Patients prefer to die at home and in comfort. Physicians struggle to speak to patients they have been trying to save but worry about legal issues. Politicians debate the best way to curb rising health care costs and shun “death panels.” Amid this fervor, researchers in Sweden found last year that conversations about imminent death are associated with improved care and less pain and suffering. Now, a team at Harvard Medical School reveals more detail about the social and psychological factors that affect quality of death.

The researchers interviewed 396 advanced cancer patients and their caregivers, and then followed up a few months after death. Nine psychosocial factors were found to make a significant difference in the quality of patients’ final days.

In surveys, patients define (pdf) a good death as one where they can manage their pain, remain lucid, feel prepared and interact with family members. In the new study, patients with a higher quality of life during their final days included those who avoided hospitalizations and stays in the intensive care unit (ICU), were not worried about death, prayed or meditated, received care at home, did not use a feeding tube, were visited by a pastor in the hospital or clinic, did not undergo chemotherapy in the final week of life, and felt an alliance with their oncologist regarding therapy. The results were published online July 9 in the Archives of Internal Medicine.

ICU stays in the final week of life mattered the most, accounting for 4.4 percent of variance in outcomes, whereas a sense of alliance between patient and physician accounted for 0.7 percent. Much of the variance remained unexplained. Other influences could include underlying cancer biology or even a patient’s personality and general outlook on life, says Holly Prigerson, a psychiatry associate professor at Harvard Medical School and the study’s senior author. But, these factors could give policymakers and hospitals a cost-effective road map for end-of-life care decisions in the future. Prigerson cites the frustration and helplessness that oncologists feel when their patients are beyond curative care. Withdrawal, however, apparently is not the answer. “Just being present and being there, rather than abandoning patients and withdrawing,” she says, “matters a tremendous amount to patients.”

But not all of the findings have clear policy implications, says Diane Meier, a professor of geriatrics and internal medicine and director of the Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York City. How much a patient worries or whether they find comfort in prayer may be hard to change. But already, physicians are trying to keep patients approaching death out of the ICU. Meier says she expects more clinics, hospitals and offices to welcome pastors. Finally, training physicians to convey a sense of commitment and alliance with their patients can help. “These are teachable skills that right now are not in the curriculum at medical schools,” she says.

Medical ethicists still debate how to best communicate end-of-life options to patients. But some states, such as New York and California, mandate that physicians start the conversation and offer information on palliative care designed to improve patient comfort. Such discussions could also reduce costs. In a 2009 study, Prigerson’s team found the cost of care in a patient’s final week was $1,041 (35.7 percent) less, if he or she had an end-of-life discussion with doctors.

A reluctance to discuss end-of-life decisions may lead to care that is too little and too late. Half of all adults older than 65 years of age made an emergency room (ER) visit in the last month of life, according to a study in the June issue of Health Affairs. Data from the Health and Retirement Study was linked to Medicare claims to track ER use and death. Three quarters of the emergency visits led to hospitalizations and of those admitted, two thirds died there.

Hospital emergency departments focus on triage and stabilization and are not equipped to deal effectively with patients near the end of life due to illness or age, says Smith, the study’s lead author. The visit comes at a time of crisis for these patients and their family members, he explains. Many are not prepared for the end of life. For instance, only 10 percent of the study participants were enrolled in hospice care. “We’ve come a long way from where we were 10 to 15 years ago,” Smith says. But, he adds, clinicians need to develop more robust palliative care programs and focus on care outside the hospital, such as in doctor’s offices and in the home.

Improvement on the way
One of the topics physicians could and often do discuss is palliative care, which offers relief and comfort, such as medicine to tame nausea. Large hospitals are most likely to have palliative care teams, finds a 2011 report from the CAPC. The report gave the nation as a whole a B grade—up from a C in 2008—observing that less than a quarter of all states still need significant improvement. However, there is only one palliative care specialist for every 1,200 people living with a serious or life-threatening illness in the U.S. compared with one oncologist for every 141 newly diagnosed cancer patients. Additionally, only 54 percent of public hospitals provide palliative care.

That access could be extended under the Patient Protection and Affordable Care Act of 2010 (pdf), recently affirmed by a Supreme Court ruling, says Kathy Cerminara, a law professor at Nova Southeastern University in Florida and an expert in law governing treatment at the end of life.

Two provisions in the act explicitly address hospice care, a common way for patients near death to receive palliative services. The first provision authorizes the secretary of the U.S. Department of Health and Human Services to fund a study determining whether patients in hospice programs would benefit from offering curative and palliative cared simultaneously (For now, hospice care typically requires patients to forgo curative treatment in order to enroll.)

The second provision is likely to challenge rural health providers, an already struggling sector, according to the palliative care report card. The provision requires reevaluation for any patient remaining in hospice care after six months. Hospice programs that show a high rate of reenrollment can face review and potential fines. Medically underserved areas, including rural stretches of many states, struggle with short staffing and a lack of hospice providers already, Cerminara explains. Requiring face-to-face encounters for patients hoping to remain on hospice may prevent professionals from recommending service in the first place. “Congress has a good goal in trying to prevent fraud and abuse, but they’re doing it in a rough way,” Cerminara says.

Overall, a change in end-of-life care appears to be on the horizon, Prigerson says, that has more to do with patients’ social and psychological needs than conventional biomedicine. “There has been a dramatic shift in the recognition of the importance of attending to the psychosocial needs of patients who are dying,” she says. But patients still could benefit from more consistent dialogue about their choices, not to mention wider access to care.

The Perils of Palliative Care

By David Ollier Weber
June 26, 2012

The man was dying of metastatic lung cancer. Relatively young, still in his 50s, he’d finally married his longtime girlfriend and had gone home to spend his last days with her as a hospice patient in a medical bed set up in their San Diego living room.

As the days went by the man grew weaker. He could no longer rise from the sheets. He lost his appetite and seldom ate. Often he was hard to rouse. His pain was intensifying.

“My job,” recalls palliative and hospice care physician Jeffrey Stoneberg, M.D., “was to make sure he was comfortable and able to remain home with his wife while receiving the best quality of care. Mostly that meant easing his pain. He had a morphine pump, and over a couple of weeks we adjusted the doses. Then, toward the end, the pain suddenly escalated. I advised the nurse who called me to increase the dose to a point that I thought was very reasonable, and I explained to his wife on the phone what I was doing and that the end of his life was near. That night he died.”

Stoneberg, who now heads the inpatient hospice and palliative care department at Alta Bates Summit Medical Center in Berkeley, Calif., has followed exactly the same procedure hundreds of times. He takes deep satisfaction from the knowledge that he is helping ease patients and their families through what otherwise can be an agonizing final ordeal. But this time was different.

Horrified when her husband stopped breathing, the woman called the police — and suggested that Stoneberg was guilty of his murder. “She took what I’d said to mean that the changes I’d made in the morphine [dose] had killed him,” Stoneberg remembers, unhappily. Statements were taken, the man’s body was trundled into an ambulance and an autopsy by the medical examiner was ordered.

Several months passed before the official investigation was complete. For Stoneberg it was his own ordeal.

In the end, he notes, “I was vindicated.” The autopsy report confirmed that the drug dosage he’d prescribed was neither lethal nor the cause of the patient’s death.

“I was cleared of any wrongdoing,” he emphasizes. Nevertheless, “the stress, the anxiety, the toll it took on me created a circumstance in which, even though I knew in my heart I didn’t do anything improper — that what I’d ordered was evidence-based and according to all my training — still I began to question myself. ‘Did I kill him?’”

The Risk of Relieving Pain

In my last piece for H&HN Daily I wrote about a reporter’s moving account of the death of her aged father. His expensive and grueling two weeks of intensive hospital care graphically illustrated the need for greater emphasis on end-of-life planning to reduce the severe emotional and financial burdens that futile interventions place on patients, families, providers and the health system overall. I interviewed Stoneberg for that article, and I immediately thought of him when I read a headline in a recent issue of American Medical News:

“End-of-life care: Pain control carries risk of being called a killer.”

According to a survey of 663 physicians belonging to a national hospice and palliative medicine society, published in the March 2012 issue of the Journal of Palliative Medicine and reported in American Medical News, more than half of the doctors had been told at least once within the past five years that the treatment he or she provided was nothing less than “euthanasia,” “murder” or “killing.”

For 25 of them the charge was so unequivocal it had led to a formal investigation — by their own institution, the state medical board or the state attorney general’s office. What’s more, in a third of those cases the damning accusation had been leveled by another member of the physician’s own health care team.

Not one has been found guilty.

The study’s thesis and its conclusions corroborated Stoneberg’s experience: “Commonly used palliative care practices continue to be misconstrued as euthanasia or murder, despite this not being the intention of the treating physician. Further efforts are needed to explain to the health care community and the public that treatments often used to relieve patient suffering at the end of life are ethical and legal.”

Nathan Goldstein, M.D., a geriatrist and palliative care physician at Mount Sinai School of Medicine in New York City, is the lead author of that survey and one of the lucky minority in his pain-relief subspecialty who has never, he’s glad to say, had his ethics or the legality of his actions called into question.

Oh, he allows, he’s encountered occasional objections that he’s prematurely consigning a patient to death by removing artificial nutrition or hydration. He’s heard banter that implies his role is to off people. But he’s never had to defend himself or endure the emotional reactions that Stoneberg and the accused respondents to the survey listed in order of severity: worry (about damage to their reputation, financial cost, loss of medical licensure or imprisonment), anger, anxiety, a sense of isolation, depression, shock, sleeplessness, self-doubt, fatigue, difficulty working, embarrassment.

In fact, for all the misconceptions about what they do and why and when and whether they should do it, very few hospice and palliative medicine subspecialists — only 4 percent of the survey respondents — have faced formal charges of deadly misconduct in the past five years.

That’s of little comfort, of course, to those who have been or might in the future be wrongly fingered. And make no mistake, Goldstein and his coauthors warn:

“Any physician, nurse or other practitioner who works with dying patients may be a potential target of murder allegations if their motives are doubted or misunderstood by members of the health care team and families.”

The Rule of Double Effect

The palliative action most likely to trigger a homicide charge, according to Goldstein’s survey respondents, is terminal sedation — that is, “the application of pharmacotherapy to induce [unconsciousness] in order to reduce the burden of otherwise intractable suffering.”

Prescribing a drug dose to a terminally ill patient that’s strong enough to blot out awareness of recalcitrant pain is actually the duty of the physician as healer, the American Medical Association asserts in its code of medical ethics. Even if the sedation might speed up the dying process — by depressing respiration, for example — both civil law and most religious traditions “acknowledge the correctness and compassion” of resorting to it, Goldstein explains.

The AMA code of ethics specifies that the patient and/or surrogate must give informed consent for the treatment. But most importantly, the physician’s intent must be to relieve misery, not to snuff out a life. Terminal sedation is justified under the principle of beneficence — the duty of a doctor to act in the patient’s best interest. If there’s a harmful aspect to doing what’s good, it’s subordinated under the “rule of double effect” first elaborated by the philosopher Thomas Aquinas. Application of that principle to pain palliation, Goldstein and his coauthors note, has been validated by the U.S. Supreme Court.

Ultimately it’s the physician’s mindset that’s the governing factor, observes Stoneberg: “What is my intent in giving the medication? If it’s to relieve pain, to make the patient more comfortable … and, therefore, actually to live longer and better … and if I’m not giving something with the intent to suppress breathing … then there’s no ceiling. You can go as high [on the dose] as you need to.”


On a warm, sunny weekend morning in early May, Monica Romo-Contreras, M.D., sits inside an artificially lit conference room with 43 other clinicians from six of the Sutter Health system’s Sacramento-Sierra Region hospitals, reviewing the principle of intended/unintended consequences.

Romo-Contreras is the medical director of the Northern California system’s regional palliative care program. Along with her administrative co-director, Kathleen Grace, she’s put together this day-and-a-half continuing medical education program designed, as described in its prospectus, “to educate physicians on the knowledge and skills needed to appropriately care for dying patients. It will teach fundamental skills in communication, ethical decision-making, whole patient assessment, multidimensional aspects of suffering, palliative care and pain and symptom management … presented on the assumption that health care will be improved when medical professionals learn superior end-of-life skills that consider the whole person.”

Over the past year and a half, Romo-Contreras, a family physician board-certified in geriatrics and palliative care, has assembled with Grace an interdisciplinary nurse-led team to respond to the needs of dying patients at each of the six Sutter hospitals in their region. They received 2,500 requests for palliative care consults last year alone, Grace reports. This year’s May CME course on palliative care was the second they’ve offered — 50 doctors attended last year — and Romo-Contreras supplements these formal presentations with regular visits to individual hospitals to speak with staff and “address misconceptions” about what’s appropriate terminal therapy.

“There’s a need for a lot of education,” she declares. One promising initiative she plans to expand from the hospital where it was piloted asks each member of the interdisciplinary palliative care team to give a presentation to his or her own department — pharmacy, respiratory care, speech therapy, hospice, outpatient advanced illness management among them — explaining the methods and values that inform best end-of-life care practice.

“Our goal is to decrease suffering,” Grace emphasizes. “Our goal is not to tell patients and families what to do, but to help them identify what it is they want to do.”

Better Support

Goldstein thinks part of the onus of educating other health care professionals about what’s right and proper in palliative care falls on practitioners.

“Often we’re not explicit enough on why we’re doing what we’re doing,” he observes. “We’ll say, ‘Increase the dose,’ meaning, ‘…because the patient’s short of breath, or because her pain is worsening, or because she’s agitated, or because she can’t sleep.’ But we don’t say that. It’s important to give reasons explicitly to help other members of the health care team understand that what we’re doing is for symptom control, not to hasten people’s death.”

Similarly, he counsels, “It’s important in our one-on-one interactions with other clinicians — physicians, nurses, pharmacists — that we answer their questions in the moment. Someone might comment, ‘That seems like a high dose.’ My response is, ‘Well, really not. These meds are safe and we’re familiar with using them appropriately. This dose to me is totally appropriate.’ My anecdotal experience is that when you explain things, it makes sense to them.”

Meticulous documentation of each step of the palliative care process is also essential, points out Goldstein. At least one physician accused of murder said his explicit notes on the reasons for opiate usage and even the dose calculations proved crucial in exonerating him.

Moreover, urges Goldstein, those in palliative care need to stress that studies show patients who get more medication at the end of life actually live longer than those struggling against pain, anxiety, nausea and other debilitating symptoms.

“I had a case in December,” he recalls, “a patient with advanced liver disease. We kept saying, ‘He’s so fragile because his pain is not controlled.’ We wanted to go up on his medication. His physician said, ‘No, no …,’ but then finally agreed. When he saw his patient later that same day he said, ‘Oh my God! He’s never looked this good!’ Two days later the guy’s kicked back in bed, watching TV and eating his lunch. Because we have experience, we took his pain medication up to what he really needed.”

Finally, Goldstein and his coauthors argue in their paper for greater support within the health care system for those few unlucky clinicians whose honest ministrations at the end of life land them in hot water. They propose “a unified and coordinated effort to provide accused clinicians with legal expertise and support from leaders and professional organizations to expedite the process of exoneration and potentially mitigate the psychological and financial expense of these investigations. Creating methods to seek more mediation and less adversarial professional and legal proceedings for the resolution of these conflicts should be a goal for health care professionals, health care administrators, medical boards and regulatory bodies overseeing health care law.”

Meanwhile, says Stoneberg, for solace he has to “turn to colleagues and friends I trust, and talk it over with them.” The accusation that a doctor has willfully killed a patient “weighs heavily,” he sighs. Nor did the receipt of a thank-you card from the widow who’d leveled the charge against him offer much consolation, he notes. Bizarrely, it arrived in his mail a few weeks after the autopsy report cleared him of the murder she’d alleged.

“I did not send her a thank-you card in return for putting me through that,” he says with a grim chuckle.

The Reality of End-of-Life Care

By Lisa Schulmeister
July 9, 2012

A recent review article in Nursing Economics examined the current reality of end-of-life care in the United States. The ideal, of course, is that the American public is well-informed about end-of-life care and embrace palliative care for their loved ones (and themselves) when the time comes. However, in reality, there are many barriers to access to palliative care and hospice services. Access includes awareness of palliative and hospice services, payment and financial coverage for those benefits, and acceptance of benefits from a cultural or religious perspective.

Geographic disparities in accessing palliative and hospice care are well documented. Analysis of Medicare data found that overall, 29% of patients with advanced cancer died in a hospital. The hospitalization percentages, though, ranged from 7% in Mason City, Iowa to 47% in New York City. This statistic may say more about our culture rather than availability of services as I imagine that New York City has any number of palliative/hospice services, organizations, and facilities. Another reality is that hospice has increasingly been used by people with chronic medical conditions other than cancer.

The author of the review makes the point that discussions about quality of care, health policy, and disparity must occur and cannot be dismissed due to the fact that these conversations are difficult to have from an ethical and legal perspective. All healthcare professionals should strive to create an environment for patients where the philosophy of palliative care and hospice is understood. Goals include increased knowledge about hospice and palliative care, greater symptom control for patients with end-stage diseases, improved advance care planning, better quality of life, and ultimately less money spent on achieving better outcomes for patients facing end-of-life illness and disease.