“My mother has the right to be free from pain.” A son admonished us for the inpatient hospice care of his mother, a 78-year-old woman with cancer and neuropathic pain. “It says so on your wall.” He held up a poster taken from our wall, with the title “The Rights of the Dying”. He pointed about half way down the page to “The RIGHT to be free of physical pain.”

On admission to our unit his mother had been on higher doses of anticonvulsants and opioids. We had adjusted her medication to allow her to be more alert and interact to a greater extent with her social environment. Over time, this woman's mental status deteriorated, so that she could reliably answer only questions about her current levels of pain and somnolence, and their acceptability to her. Her psychosocial and spiritual issues were served by our psychologist, social worker, and chaplain. According to our best assessment, we felt we had achieved an optimum balance of pain control and tolerable side-effects. Her son disagreed. For this, and other reasons, he withdrew her from our care, and enrolled her in home hospice. We heard that he administered high doses of morphine every hour at home. She died the next day.

This encounter and other experiences with dying patients' loved ones, hospice workers, and other care providers, who—with the best of intentions—feel that pain and other forms of physical suffering should be eliminated, provoked an active discussion in our unit about the unintended consequences of this practice. One of the most powerful stories to influence the discussion came not from our clinical practice, but from fiction: Leo Tolstoy's novella The Death of Ivan Ilyich. This literary account of the final thoughts and experiences of a dying man prompted reflection about suffering and the power and limits of medicine.

Tolstoy's Ivan Ilyich is a middle-aged prosecutor in 19th-century St Petersburg who spends increasing amounts of his time climbing the social ladder, to the detriment of his already poor relationships with his wife and children. He develops a protracted, painful condition, the diagnosis of which eludes his physicians. When the doctors and others around him ultimately realise the severity of his condition, they lie to him about its terminal nature. A spiritually empty man, Ivan Ilyich's lingering demise forces him to confront the meaning of his inevitable death. Medicine offers no consolation and he rejects the help of his physician:

“‘You know perfectly well you can do nothing to help me, so leave me alone.’ ‘We can ease your suffering’, said the doctor. ‘You can't even do that; leave me alone.’”

Neither the administration of opium nor the ministrations of a priest can ultimately alleviate the suffering that comes from Ivan Ilyich's realisation “What if my entire life, my entire conscious life, simply was not the real thing?” Although his physical pain is great, Tolstoy portrays Ilyich's moral, mental, and existential pain as even greater.

In a diary entry from 1902—the year after his excommunication—Tolstoy wrote: “Peaceful deaths under the influence of the Church's rites are like death under the influence of morphine.” We can assume this is not a complimentary statement. In the end, Tolstoy left Ivan Ilyich alone with his suffering. To the outside world he was in agony—“screaming desperately and flailing his arms”—even as he was coming to a fundamental understanding of his life and death. “For those present, his agony continued for another two hours”, the narrator tells us; yet within he seems to have eventually found a sense of peace.

Today, in the secular world of medicine, we are becoming ever more accepting of the notion that pain and suffering must be banished from the dying experience. Pain, indeed all suffering, is meaningless; it should be erased. “The RIGHT to be free of physical pain”; yet, the reality of its control is something very different. One study that changed perceptions of the care of dying patients was the 1995 Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). In this study of death in five US teaching hospitals, family members were asked about the amount of pain patients had endured during the last 3 days of their lives. They reported that 50% of conscious patients who died in the hospital had moderate or severe pain at least half the time. This finding—alongside the results of the second phase of the trial that reported no improvement in pain control among patients in the intervention group—was surprising and distressing to many. Since the SUPPORT findings, health-care professionals have been admonished for poor pain control. For example, the Medical Board of California's Guideline for Prescribing Controlled Substances for Intractable Pain, adopted in 1994 and updated in 2007, states that failure to adequately manage pain is “inappropriate prescribing”. So that although physicians' fear of overprescribing has been one supposed reason for poor pain management in the past, now, physicians will be subject to sanctions for underprescribing as well.

Such guidelines, allied to improved public knowledge of the issue and the ever-increasing drug and surgical armamentarium available to physicians, has led to effective medical control of pain and other end-of-life symptoms. For the conscious, competent patient, this may well be a boon, because there is less reason for a patient to die with pain he or she wants alleviated. But, more generally, when a suffering-less death becomes the medical summum bonum, morphine and other drugs become our sacraments. This is not necessarily good. Pharmaceuticals are the wrong treatment for certain kinds of suffering. In his Diaries, Tolstoy tells of how his brother's suffering after a stroke is so much more serious for his not accepting his plight. He writes: “In such a condition there are only two solutions: defiance, irritability and an increase of suffering, as with him, or, on the contrary: submission, gentleness and a decrease of suffering, even to the extent of eliminating it altogether.” Tolstoy's observation is perhaps pertinent in some clinical contexts.

What would happen if Ivan Ilyich—a modern day “John Doe” or “Everyman”—were dying in the USA now? At home or in the hospital, it could be the same story: when he became unable to speak coherently for himself, his wife or perhaps the ward or hospice nurse, seeing him flail and hearing him scream, would request morphine and ever-more morphine. And, if that did not work, something would be found that would work to extinguish the visible signs of discomfort: lorazepam, haloperidol, phenobarbital. Drugged, but without “pain”, what would become of Ivan Ilyich's inner experience? Would it be transformed? Would it go away?

Now, we recognise that we are suggesting something that is potentially dangerous, and we worry about it. Pain relief should never be withheld when it is desirable. Nor do we think that physical or existential suffering is, necessarily, redemptive or edifying in any way. But, it might be for some people; there might be someone for whom, as for Ivan Ilyich, the suffering of dying is a path to self-understanding or spiritual awakening. Should this be something that matters to the physician? Physicians and nurses need to be sensitive to the suffering of those they care for, but, does this mean a sensitivity to, or a sympathetic understanding of, more than just a patient's physical pain and symptoms, important as those are? Although many people would prefer a painless, instant death—no suffering, just lights out, quickly, permanently—others would have some variation of what seems to be Tolstoy's version of the good death: a conscious one, with acceptance of whatever comes. For example, the Zen teacher, Shunryu Suzuki, took opioids for his painful cancer for a while—to please his doctor, he said—then stopped because he wanted his mind clear.

Our interpretation of Tolstoy's admonition to us in The Death of Ivan Ilyich is of the need to live a good life, one that is “the real thing”, and die a good death, one that is conscious and accepting. We would not, of course, presume to impose this view on anyone who is suffering. It would not do to demand that other people die our—or Tolstoy's—version of a “good” death. Moreover, there is probably a variable level of pain (or other symptoms) that actually hampers a conscious, accepting dying experience. And, of course, there are those, few or many, for whom a good death is one with total symptom control—no consciousness desired.

The original intent of the hospice movement was to provide a supportive presence for dying patients and their families, with close attention to all forms of suffering—physical, psychological, and spiritual. Have hospice providers and others who care for dying patients lost sight of this intent, as we increasingly use—and perhaps in some settings overuse—pharmaceuticals to treat not just pain, but all forms of suffering? As the SUPPORT findings revealed almost 15 years ago, physicians undertreated pain at the end of life in many people. But, do health professionals now overtreat pain in some contexts? How then should we act? Certainly not with knee-jerk “symptom relief” medication that can dull or remove whatever subjective experience someone may have. Nor by denying symptom relief out of our own fear or ignorance. But rather, with care, with discretion, with sensitivity to whatever might be happening in the hearts and minds of an individual patient for whom we care at the end of life. This, we believe, is what good hospice and palliative care should be about; it is end-of-life care devoutly to be wished for.

Further reading Tolstoy, 1981. Tolstoy L The Death of Ivan Ilyich. Bantam Books , New York, NY Google Scholar Christian, 1994. Christian RF Tolstoy's Diaries. HarperCollins-Flamingo , London Google Scholar The SUPPORT Principal Investigators, 1995. The SUPPORT Principal Investigators A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 274 : 1591-1598 PubMed

Crossref

Google Scholar Saunders, 1969. Saunders C The Moment of Truth: Care of the Dying Person. in: Pearson L Death and Dying: Current Issues in the Treatment of the Dying Person. The Press of Case Western Reserve University , Cleveland Google Scholar Hallenbeck, 2003. Hallenbeck J Palliative Care Perspectives. Oxford University Press , Oxford Scopus (62)

Crossref

Google Scholar Medical Board of California. Medical Board of California Guideline for Prescribing Controlled Substances for Intractable Pain. Adopted in 1994, revised in 2007. http://www.medbd.ca.gov/pain_guidelines.html Google Scholar GeriPal—A Geriatrics and Palliative Care Blog. GeriPal—A Geriatrics and Palliative Care Blog. http://www.geripal.org Google Scholar