Comfort vs. function in ethical care of chronic pain
[Editors’ note: This is the second in a series of seven articles about bioethics. Q&A’s include UW experts discussing the beginning of life, end of life, clinical consultation, pain care, research and teaching. An overview started the series.]
The way physicians treat chronic pain – their willingness to prescribe opioids (painkillers), their interest in alternative therapies, their reliance on MRIs and other diagnostics – is a mishmash of practices. Two pain-relief experts at UW Medicine discuss standards of care, and ethical considerations and rationales that guide their own approaches.
David Tauben, M.D., is chief of UW’s Division of Pain Medicine and clinical associate professor of general internal medicine. Mark Sullivan, M.D., is a professor of psychiatry and adjunct professor of bioethics and humanities. He provides psychiatric consultations in the UW Medicine Center for Pain Relief.
Q: Is there a generally accepted medical principle for prescribing painkillers to people who live with chronic, nonmalignant pain (CNMP), in contrast to people who are dying?
Sullivan: We recognize the unacceptability of severe pain in the dying patient. Nobody raises the kind of arguments you heard 50 years ago about turning dying patients into addicts. Nobody says we should hold off, other than patients who desire to be alert.
But I also think that has colored a lot of other pain arguments. The Joint Commission (JCAHO) issued edicts holding that “pain is the fifth vital sign” – you have to measure it on a 0-10 scale, with the implication that high levels of pain are by themselves bad and an indicator of some deficiency in medical care.
Tauben: I recall 10 or 12 years ago hearing a non-end-of-life pain-care provider; he was managing a patient whose sister was dying of breast cancer, and when pain relief was offered to the sister, she was dramatically improved. So his patient said, “I guess I have to have cancer to get adequate pain relief.”
It was a physician audience and people rose to their feet to applaud the notion that you don’t have to be dying to get sufficient pain relief. I think that sentiment has led us to transfer the dying-of-cancer rationales, the no-ceiling doses of drugs, to people not dying of cancer. But chronic pain is a separate disorder entirely.
The goal of pain relief at the end of life is comfort. It doesn’t matter if the individual we’re treating is alert for only a small portion of the day. In non-cancer pain, the goals are to improve function and quality of life. They are different.
Q: Why is it ethical to use comfort as primary criteria in one circumstance but not the other?
Tauben: We’ve learned that over extended periods, exposure to increasing doses of opioids – the most common currency in terms of pain treatment – becomes less effective. The doses have to be increased every three to six months until individuals develop impairments and side effects of those high doses, in addition to tolerance. High doses impair immune function and resilience of the endocrine system. They affect quality of sleep. They make individuals less active and less engaged in life. Over the long-term, the benefits are less dramatic than those for someone with terminal illness and a short probable lifespan.
Sullivan: I think comfort is an adequate goal at the end of life and an inadequate goal otherwise. If your main life goal is comfort, your capacity to work, to function, to relate to other humans, to stay in good health – all of those deteriorate. With terminal disease, that makes more sense. But if there’s more life to be lived, then you lose that life by pushing comfort.
Tauben: One older technique not used currently was brain surgery where some of the neural networks were disconnected. Patients who had this procedure reported more comfort; they had the same amount of pain but it didn’t bother them anymore. But in the rest of their life – interactions with other people, goals, responsibilities, the stuff that defines us as humans with meaning and purpose – none of that mattered, either.
Q: Mark, the paper you wrote for the Journal of Pain in 2005 cited a lack of an ethical framework for CNMP. Does a framework exist now that has widespread support?
Sullivan: No. There’s still a lot of confusion. If you talk to the docs who tend to be the high opioid prescribers in the community, they’ re going to talk to you more about comfort and reducing pain and suffering. The more conservative people are going to talk to you about function.
Q: Is it true that some patients do benefit from long-term opioid therapy? If so, how do you divine which patients are most appropriate for that?
Tauben: Absolutely, true. You have to drill down, ask about their goals. If their goals are indeed to improve quality of life and functional goals, a trial of opioids makes absolute sense. Low dose opioids for patients over a long period of time may benefit a significant percent – 20 to 30%. As you go higher in the dose, the risk-benefit equation flips.
Q: Then it would be ethical to withdraw or reduce that therapy?
Tauben: Yes. Pain has been called a “gift.” A recent clinical trial of an antibody against the nerve growth factor that causes pain with osteoarthritis was fabulous – one of the most miraculous treatments we have. The problem was that these individuals subsequently blew out their ankles, shoulders, wrists and elbows because, without pain, their body had no warning that they were overusing the musculoskeletal system.
So excessive elimination of pain also changes its ability to be a normal alarm.
Q: Do physicians typically give more credence to a pain complaint of a familiar patient than one of a new patient? If so, is that ethical?
Sullivan: I think it is. Malingering, which is lying about how you feel to obtain drugs, is rare when you have an enduring relationship with the doctor. I don’t think that’s true in ERs and walk-in clinics where someone is presenting out of the blue. You don’t know the patient’s context or their goals or their history, and it’s dicier.
There has been a widespread effort to reduce opioid prescribing, particularly for chronic pain, in emergency rooms for that reason. There’s a lot of doctor-shopping, ER visiting just to collect Percocet.
Q: It’s ethical to have your foot on the brake with that patient but not the patient you know?
You have to presume that patients are telling the truth about pain. Frankly we don’t have an authoritative way to disprove their reports. But the ER is a terrible place to try to have chronic pain managed. We have to be compassionate but we don’t have to encourage people to get their chronic pain medicine in the ER. So instead of 10 days’ worth of oxycodone, you get three.
Tauben: It’s not approaching patients with bias as much as with prudence. When you know a patient well, you understand them in all their complexity. When they walk out of nowhere into the clinical environment, our ability to gauge the complexity of the situation is impaired.
Q: In cases of fibromyalgia and other conditions where it’s difficult to objectively evaluate related tissue damage, do you measure pain in the same way you do with patient cases that are easier to objectively evaluate? Is that ethical?
Sullivan: I don’t think we have anything better, so that’s what gets used. The authority to grant disability or prescribe medicine has historically been vested with the doctor. But since everyone privileges objective information, we’ve tried to routinize the evaluation and make it non-prejudicial by giving the decision to a machine – an X-ray or CT scan or MRI to say whether your pain is valid. And a lot of people, including me, know that stinks because MRIs don’t tell whether you’re in pain. The problem is that we don’t have an alternative we can implement.
Tauben: We validate with our clinical judgment and experience, with an exam and other diagnostics, by knowing the complexity of that individual’s life and their response to the injury.
Sullivan: I never say “I don’t believe you have pain” or “You are exaggerating your pain.” But I do butt heads with patients who say, “I need another back surgery” or “I need twice as much opioid.” I will say, “No, you don’t.” We will push back on the treatment side.
Q: If you advise a patient – someone you’ve known for years, who has chronic, worsening pain – if you tell them about all the risks of long-term opioid therapy, and they still choose that therapy, isn’t it unethical to withhold it?
Sullivan: At one time, Medicaid’s medical director identified 300 people in Washington state who had been prescribed over 1000 mg of morphine per day. If you talk to those people and their doctors, they both see these as palliative care cases. Patients don’t have terminal illness, they have coronary disease, osteoarthritis, diabetes, obesity – and they will tell you they’ve tried everything else, without success. The docs’ rationale is, “I’m keeping him out of the hospital, out of the ER and out of the nursing home by using these high opioid doses and palliating this case."
There were also very high rates of death in that group.
Q: Let’s say the patient knows and has accepted that.
Tauben: It’s ethical to prescribe a treatment that we believe will be beneficial to the individual. The flip side is that, if we maintain the view that our goal is to maintain quality of life, then I have no ethical obligation to prescribe something that I think has multiple risks and marginal benefits.
Sullivan: (to Tauben) So you don’t think the patient can declare themselves to be a palliative care case?
Q: What’s an example of a patient whose circumstances might make them feel this way?
Sullivan: Mid-50s or 60s, multiple chronic illnesses, multiple psychiatric illnesses – PTSD, depression, often with extensive abuse history. Someone with a horrifically sad life story. They basically want to be numb.
Tauben: One patient we discussed in group conference said, “I don’t care if this drug kills me. My life is so miserable because of back pain that I will take that risk. Please relieve my suffering.” That’s a palliative-care scenario, and in that case I believe it is ethical.
Can we do more to relieve that patient’s suffering? Yes. Are those resources available? Often no. So managing these individuals is a conundrum. The experience and the ravages of chronic pain are complicated for every individual.