We Need to Put Humanity Back Into Health Care

Over the last six months or so, I have been thinking more and more about something I believe is fundamentally missing in the healthcare system: humanity.

Merriam Webster defines humanity as “compassionate, sympathetic, or generous behavior or disposition: the quality or state of being humane.” It is my opinion that healthcare systems are lacking humanity. I don’t offer this to vilify individual health care providers but rather offer this in the context of healthcare systems overall. With that, in my numerous experiences, I have encountered individual health care providers that significantly lacked humanity and compassion, with most of my interactions ranging from adequate to excellent (the latter being the vast minority). Concerning healthcare systems, I appreciate that multiple factors impact this lack of humanity and while I am not able to offer an engineered solution to systemic healthcare change, if we don’t talk about this, we will never work to change it.

I have had dozens of healthcare interactions over the past 35 years of living with persistent pain, as well as a recent and unrelated health diagnosis concerning a rare genetic disease. From this, I have experienced multiple interactions where I was not treated as a person, but solely as the current medical case in front of a health care provider. Often my presence felt like I was nothing more than the vessel that transported my medical condition and symptoms; there was never any consideration to how my health was affected by anything else in my life. The healthcare lens I was viewed through was often extremely narrow.

This is not a new observation. Canadian physician William Osler, who practiced medicine in the latter part of the 19th century and early part of the 20th century spoke to this, noting that “it is much more important to know what sort of patient has a disease than what sort of disease a patient has.” The philosophy of patient-centered care was identified over 100 years ago by Dr. Osler, yet healthcare continues to struggle with an appropriate and effective patient-centered framework. In Osler’s time, the standard doctor-centered model considered doctors at an elevated status and “patients did not expect, nor were they expected, to actively take part in the history-taking process, as their health was totally in the hands of their physician.” This concept goes back even further than the 19th century. Voltaire, a French writer, historian and philosopher of the 18th century is quoted as saying that “doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing.”

If we fast forward over 100 hundred years, this topic continues to be discussed in modern research. In 2011, Dr. Pankaj Gupta wrote an article about his personal experiences, noting that on his first day of medical school his father said to him “son, always remember that the secret to the care of the patient is in caring for the patient” and only a few years later he found himself referring to the patients he so wanted to serve “reduced to an excellent hemiplegia case or a great hernia case.” Medical schools focus on the biology of medicine while underestimating the importance of the social determinants of health; the problem with this is that misses the totality of people’s pain.

Compassion in in healthcare is multi-faceted involving multiple dimensions, including ethical, professional, effective communication, human, spiritual and religious, and patient involvement. The focus of a 2019 paper titled “Compassionate Care in Healthcare Systems: A Systematic Review” concluded that “the improvement of compassionate care through education cannot remove completely the gap between theory and practice, because it seems that clinical environment and organizational values of healthcare system are the largest facilitating and inhibiting factors for filling this gap.”

A fundamental principle of healthcare humanity is founded in healthcare provider and patient communication. A good article on history and importance of language in medicine is “Literature about medicine may be all that can save us” by Andrew Solomon and published in The Guardian. The author talks about the importance of language in medicine, noting that “the emerging field of narrative medicine proposes that patients can be treated correctly only when they can tell the story of their illness.”

With this long-standing issue, what is a call to action? While I don’t profess to have answers to total healthcare system change, I believe we must focus on a few fundamental factors. We need to provide more healthcare provider training and education in the psychology of pain. I’m not advocating to train them all as psychologists, but rather integrate psychology education into medical doctor training and the training of other healthcare providers, including nurses, physiotherapists, massage therapists and other allied healthcare providers. I would suggest that this training needs to focus on people’s life purpose and meaning, as persistent pain often negatively affect both. Some research has led me to the concept of logotherapy, which is a “philosophy for the spiritually lost and an education for those who are confused. It offers support in the face of suffering and healing for the sick” examining “the physical, psychological, and spiritual (noological) aspects of a human being, and it can be seen through the expression of an individual’s functioning.” I find this concept very interesting as touches on what I feel are foundational to many people’s psychological concerns associated with their ongoing pain, specifically loss of self-identity. One’s self-identity erodes over time as they find themselves losing more of the person they were or the person they thought they could be due to the physical, emotional and social impacts of their pain.

I also believe that narrative medicine should be integrated into all health care provider training. It is my understanding that there is no accepted definition for narrative medicine but Dr. Rita Charon, who is credited as originating the field of narrative medicine notes that it is “medicine practiced with narrative competence to recognize, absorb, interpret, and be moved by the stories of illness.” Narrative medicine is paramount concerning humanity in healthcare. People living with persistent pain are very much more than their pain and the only way to effectively explore this with healthcare providers is through meaningful conversations. By encouraging and supporting people to tell their stories, this provides “the kind of contextual richness that promotes and nourishes empathy, prompting a provider to switch from asking ‘How can I treat this disease?’ to ‘How can I help my patient?’”

In the past, I have talked about faces of pain and that many people that live with persistent pain adopt different masks, depending on situations. This is not an effort to fool anyone, but more so to get by in day-to-day life including family, work and healthcare. Those living with long-term persistent pain learn to adopt a mask of pseudo-normalcy. Unfortunately, this can cause unintended consequences as it can appear to minimize one’s pain and its effects on their lives. It’s been reported that the relationship between facial expressions and reported pain levels “are at best moderate in healthy individuals undergoing acute pain tests and are generally weaker in patients with chronic pain. The neural systems underlying pain perception and nonverbal facial expression may therefore be largely dissociable.” I would offer that this is one of the reasons why healthcare needs to widen its lens when supporting people living with persistent pain as typical behaviors, such as facial expressions are often not an accurate reflection. While more study is required in this area, research has noted that “as predicted by the psychosocial model of chronic pain, our results also indicate that additional regulatory mechanisms are involved in facial expression in patients with chronic pain who may represent a socially driven adaptation in coping with the pathology.”

Over the last 35 years of living with persistent pain, I have received technically excellent care in that the surgeons repaired the trauma and I have received some partially effective interventions. I would offer that some of these interactions have met the definition of therapeutic alliance, but most of my interactions have been reductionist. In all my healthcare interactions, I have never been asked how my pain has affected my life, yet I have been asked countless times to rate my pain on a scale of 1 to 10.

People living with pain cannot be viewed only as a collection of their symptoms and their medical history. Healthcare must consider one’s total pain; pain that is “a person’s physical, psychological, social, spiritual, and practical struggles.” To best support people living with persistent pain, healthcare systems need to dismantle the hierarchical model of provider and patient and focus on humanity.

This is A Path Forward.