Palliative Matters: Episode 3

Pain and Suffering Aren’t the Same Thing in the Lives of Patients with Serious Illnesses   

Pain and suffering are closely linked, both in the expectations of patients who present in the doctor’s office with serious or life-threatening illnesses such as cancer and in the work of the palliative care clinicians whose job it is to relieve—or at least manage—their patients’ pain and suffering. But the two concepts are not exactly the same, hospice and palliative care specialist John Mulder, MD, executive director of the Trillium Institute, said in a recent Palliative Matters podcast posted on the Trillium website.

“In our professional roles as palliative care clinicians, we’ve all observed individuals who we thought were experiencing suffering,” he said on the podcast. “But what is it? What does that mean?”

One way to explain the difference is to say that pain is what happens to us and suffering is what we do with the pain message that is delivered by our nervous system to the brain. That suggests we might have, at least in some cases, some control over our suffering. It might be possible to reframe or redefine the experience of suffering, to change our perspective.

But of course, we also need to acknowledge that pain itself is a multifaceted phenomenon. Dame Cicely Saunders, the founder of the modern hospice movement, introduced the concept of total pain to describe all the ways it is experienced, physically, emotionally, psychologically, spiritually by patients who are confronting a serious illness.

Pain is typically defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Something is broken or inflamed and it hurts. Nociceptive pain is the signal for this injury, sent through the nervous system to the brain, which then tries to interpret it. Neuropathic or nerve pain is harder to pinpoint, harder to diagnose, harder to treat, but it still hurts.

But how do we relate that definition to what is sometimes referred to as emotional pain, social pain, psychological pain, or spiritual pain? How does a serious illness impact our sense of ourselves, our relationships, our place in the world, our ability to play the roles we’re used to, our hopes for the future? What is the totality of that experience, and does it get us closer to what we want to capture by the word suffering?

In a celebrated 1982 New England Journal of Medicine essay, later expanded into a book, physician and ethicist Eric Cassell, MD, emphasized this distinction between pain—the body’s response to an injury—and suffering, which has to do with how we experience that pain in all aspects of our lives, how we try to understand it and make meaning of it. What happens when one’s whole sense of who they are as a person is under threat because of the pain? What of the loss of meaning or purpose or connectedness to others?

In the classic example, a woman in the act of giving birth may be able to tolerate enormous pain because of what it represents—the impending arrival of her baby. But the pain of an incurable cancer could be magnified by a sense of helplessness, with no hope for the future and no expectation that the pain will go away or that the cancer will be cured.

“In medical school we’re taught about pain—physical pain, the neural pathways for relevant tissue injuries, and how to combat it,” noted Dr. Mulder’s colleague, Jason Beckrow, DO, medical director of Caring Circle-Spectrum Health Lakeland, in the same podcast. “But Dr. Cassell contrasts suffering with physical pain, showing the multifactorial origins of suffering, including the emotional, spiritual and existential. We’re trained to focus on how pathology affects pain, but not to dive into that and see the multi-focal aspects of suffering.”

Existential suffering, he said, is personal and private, a threat to one’s very sense of self. Over the years, observing such suffering in the patients and families he has cared for, Dr. Beckrow has seen how it comes in many forms. In the podcast, he described an encounter early in his career with a patient who had lung cancer, and who had a lot of financial questions about how much a new treatment for the cancer was going to cost.

“I remember my naïve initial answer to him: ‘Oh, don’t worry about the money.’ But I quickly realized, this man was being forthright with me when he said: ‘I would rather die than bankrupt my family,’” Dr. Beckrow related.

“I have thought of that encounter for years. Part of his suffering was because he had raised a family and been a financial provider for them. Now all of that was being threatened.” In addition to dealing with metastatic cancer, he was also confronting real financial concerns, but also the very definition of his role as breadwinner for his family.

Dr. Mulder described once walking into the room of a hospitalized patient who was slumped in a chair. When he asked how she felt, she replied, “’Oh, Dr. Mulder, my head hurts, my back hurts, my heart hurts.’ In those nine words she helped me make an important connection to what was central to her pain.”

He added that it’s a shame some people might wish for death because of the fear of suffering that could be addressed by the medical team. “Addressing that suffering is the job of the entire multidisciplinary team in palliative care, not just the doctor but the social worker, the chaplain, the nurse.” Some brief talk therapy with the patient could explore what’s really going on in their life. The chaplain can help with spiritual pain. Are there relationships that need healing? Are there practical issues that could be resolved?

“Step one is to acknowledge their suffering,” he said. “’I know that morphine isn’t going to ease the pain you brought to me. It seems like there’s more than just your cancer that’s causing your distress. Let’s look at all the ways this disease has impacted your life. I’m not suggesting that it’s all in your head—but it is easy to see how you’ve been impacted by all of this.’” Together, the doctor and patient can seek strategies for coping with it.

“What’s critical for the physician is that we stay open to these distinctions between pain and suffering. It’s our job to begin to ferret that out. When someone comes to see us and they have metastatic disease and pain, I can write a prescription for those symptoms and in many cases their pain will get better. But have we really addressed the full extent of their pain? Have we examined their suffering? That’s why we work with our students to teach empathy, to understand that it goes much deeper than the tissue damage,” he said.

“When you can identify it and call it out, sometimes the pain is actually reduced. I am able to sit in the patient’s room, talking in a reassuring tone about the pain they are experiencing and how I plan to address it,” Dr. Mulder said. “When I leave their room their pain level—measured on a 10-point pain scale—is reduced.  It’s a curious phenomenon, and an important reminder that pain doesn’t always require medication.  Sometimes just being present, listening, and guiding patients to the root of their suffering can relieve pain just as much as any drug.”