Pain, suffering, and person centered care: our great opportunity

Pain is one of the most frequent and distressing symptoms among patients with advanced cancer. Pain is frequently associated with multiple other physical and psychological symptoms such as fatigue, insomnia, anxiety and depression.

In the last 30 years there has been great progress in the assessment of cancers, evolving from morphological features to molecular profiles, sophisticated imaging, and tumor markers. The assessment allows rapid determination of prognosis and it also guides therapy. When the patient who has undergone such a sophisticated evaluation of their tumor develops pain and suffering, the only way we can evaluate this is to ask them to rate it from 0 to 10. It is remarkable that such method is the same as 30- 40 years ago, and perhaps even more remarkable that in many cases it is not even done.

Numbers help us characterize the severity of a clinical situation and monitor the response to treatment. The numbers expressed by the patient who suffers pain and other symptoms are not a reflection of the nociception production at the level of the bony metastasis or the stretching receptor activation for dyspnea because we have not developed methods to measure those pathophysiological mechanisms. They do not even reflect how much of the stimulus is perceived at the brain somatosensory cortex or the limbic system since we are also unable to measure central perception of pain and suffering. These numbers the patient expresses and guide our treatment are always a multidimensional construct with contribution of symptom production, symptom perception, and multiple modulating factors to the way we express the suffering we perceive, including personality, culture, mood, family, social circumstances, and the rapport and trust between patients and clinicians. It is simplistic and frequently dangerous to oversimplify the complexity of a patient’s 0- 10 symptom expression.

In the last 30 years there have been major advances in the treatment of most cancers, including targeted therapy and immunotherapy. It would be malpractice to treat most cancers today the same way we treated them 30 years ago.  When the patient who receives such sophisticated tumor treatment develops pain and suffering, we still treat pain with opioids that are between 80 and 220 years old, and other drugs and counseling techniques that are not much different from what was available 30 years ago.

Pain and suffering among cancer patients is complex in great measure because we have very rudimentary tools for effective assessment and management. It is necessary to spend time with the patient and family, to evaluate not only the pain but all the previously mentioned contributing factors, and to develop a person-centered plan based this time intensive assessment.

This is what supportive and palliative care teams do. Using the limited scientific knowledge compensated by wisdom and empathy these teams frequently succeed at relieving pain and suffering when other clinicians have failed. Unfortunately cancer patients have access to these teams late in the trajectory of illness, after months of unnecessary suffering, and many times not at all, even in the most comprehensive cancer centers.  This is particularly surprising as these programs have a demonstrated effect of dramatically lowering the cost of care at times when cancer treatment is becoming financially not viable in most of the world

It is possible to change the natural history pain and suffering in a similar way as it has been done for most cancers. Independent academic structures within major cancer centers can be established with a mandate to deliver care for patients with pain and suffering, and to conduct research and novel approaches to assess and manage physical and emotional suffering.

Independent administrative arrangements in will be needed to secure access to staffing and resources,  since the existing administrations have a track record of failure to create structures, processes and outcomes in the care of pain and suffering.

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Dr. Eduardo Bruera

Department of Palliative Care and Rehabilitation Medicine Houston, TX, USA