End-of-Life Choice, Palliative Care and Counseling

The Perils of Palliative Careby Jay

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By David Ollier Weber
H&HN
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.”

Education

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.