Are hospice doctors relying too much on symptom scores to assess pain?

A recent issue in The Lancet included an article entitled “The Death of Ivan Ilyich and pain relief at the end of life.” This is a thought provoking article focused on the question of whether there is overuse of pharmaceuticals to treat various forms of suffering in hospice and palliative medicine.

The authors argue that a good death, as seen through their interpretation of The Death of Ivan Ilyich, may include physical and existential suffering. Tolstoy’s character finds redemption in his suffering; he remains conscious through the agony of a prolonged and painful death and ends up with a greater understanding of life.

The authors further argue that such a moment of clarity may no longer occur if we rely on practices that promote complete freedom from suffering through the over use of pharmaceuticals:

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?

My immediate thoughts after reading this paragraph turned to the increasing use of symptom scores to assess quality in hospice and palliative medicine (just this week I finished reading one bereavement survey where the benchmark was NEVER having pain).

By setting a one-size-fits-all benchmark of quality on complete pain relief we may be going against the very foundation of palliative care – respecting patients’ and families’ values and preferences regarding end-of-life care. Some patients may value lucidity over freedom from physical discomfort; recognizing this would be a true measure of quality in hospice and palliative care.

What do you think? Do we, as a hospice and palliative care community, have an over reliance on the pharmaceutical relief of suffering, whether it be from pain, anxiety, or “agitation”? Is Tolstoy’s idea of a good death “redemptive” for some leading to “self-understanding or spiritual awakening”? Did the authors misread Tolstoy, and was his death even redemptive?

Eric Widera is an Assistant Professor of Medicine, Department of Medicine, Division of Geriatrics at the University of California, San Francisco, who blogs at GeriPal.

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  • Nick

    according to JAMA, many physicians lack the knowledge to diagnose and manage pain. They recommend a team approach. physicians using symptom score cards for pain are great!

    “Trends in opioid use in US ER departments” Vol. 299 No. 1, January 2, 2008

    Improving the practice of pain management JAMA. 2000;284:2785.

  • Gail Cooney

    I just reread “The Death of Ivan Ilyich” and was not convinced that his suffering was necessary to reach understanding and life closure. It seems preferable to have conversations that bring peace to both the dying and the surviving loved ones. Imagine how you’d feel if you were Ivan’s wife! Regardless, the goal of care in the actively dying is controlling symptoms to the extent desired by the patient. Suffering is overrated!

  • Classof65

    What is so hard about asking the patient which he/she would prefer? Suffering is overrated — and it should not be up to the doctor to decide whether I should suffer or not. And, if at first I choose to suffer, allow me the privilege of changing my mind if the pain gets too much for me to bear. Let me go, floating on a cloud, rather than white-knuckling it to the blessed end. But let ME choose!

  • Carol

    Ivan found redemption in suffering but… Ivan WASN’T REAL. We’re only now getting to the point where doctors seem to be comfortable using enough pain medicine when asked for it – heaven forbid they be put in a position where they are made to feel that they are depriving a dying person of a greater understanding of life by writing that Rx.

    Bring on the opioids! Bah to a greater understanding of life. I understand pain – I have a great understanding of pain! Bring on the opioids.

  • Erik

    Who cares if dying patients suffer less now than when Tolstoy was writing? No one needs to suffer; no one needs to watch their loved ones suffer either.

    Do we rely too much on symptom scores? Of course. We use them for all patients (which face is most like the pain you’re having?). Somewhere in US medical history, assessment of the patient fell by the wayside and we need scores instead of clinical judgement to figure out how to treat people.

  • Eric Widera

    I wholeheartedly agree with all the above comments – suffering is terrible in any form. I’m not against symptom scores – I think they are great. However, just focusing on physical pain misses much of the suffering that occurs at the end of life. Suffering comes in many forms, whether it is physical, psychological, emotional, or spiritual suffering. It is easy to reach for a four drug cocktail to sedate someone who is suffering, but much harder to really evaluate someone’s suffering on a more personal level. Through a thorough evaluation the patient and the healthcare providers can decide the most appropriate treatment plan (which could include the use of opioids or a greater involvement from chaplaincy or psychology).

    As suffering takes many forms, an overreliance on the physical aspects of suffering may not be consistent with a patients preferences or goals. For some patients their personal goal may be to be awake enough on a particular day so they can say goodbye to their loved ones. An incentive structure that mandates that everyone should have 0/10 pain score may actually go directly against a patient’s wishes. What I love about palliative care and hospice is that it respects people’s choices and values. What I don’t like about some quality improvement initiatives is that they forget that people are unique (and thus may make different choices than you or I).

  • MillCreek

    One of the sticky wickets in hospice care is that the Medicare COPs, accreditation surveys and patient satisfaction surveys all place great emphasis on the measurement and control of pain. Given the tightly-regulated environment of hospice care in the US, I suspect we will not be moving away from pain scales any time soon.

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