Can we evaluate whole person suffering?

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If we can better understand a person's suffering, we can better treat it. Image by Flickr user ming1967

As we honor Mental Health Month, there are many calls to reduce suffering. Seems reasonable, right? It’s even in California’s Mental Health Services Act (MHSA), where public systems are called to “reduce subjective suffering.” And as we broadly focus more on outcomes in health, measuring suffering (and hopefully its reduction) is crucial.

In order to measure something, we have to define it.

While some definitions of suffering simply refer to the presence of symptoms, does the presence of illness alone necessarily mean suffering? Have you ever seen someone with an illness who is suffering? It’s painful, and we want to help stop it. In contrast, have you ever seen someone with an illness who is not suffering?

Ever since my Dialectical Behavior Therapy (DBT) training, I’ve preferred a more whole person approach to suffering. Dr. Marsha Linehan, the founder of DBT, defines suffering as non-acceptance of our situation. Think back to people you have known with illnesses. Does their acceptance or non-acceptance of their situation impact their ability to cope with it and therefore their suffering? How does this affect quality of life?

Does this really matter, though? Isn’t it easier to just focus on symptoms?

To measure a reduction in suffering, sure, it’s easier to just look at symptoms. Are there negative consequences of this? As I talked about last year, we can unintentionally contribute to stigma and discrimination by only measuring and talking about negatives. At a broader level, what happens when we assume that people with behavioral health conditions suffer? Does that help give any hope of living in recovery and resilience, even while symptoms are present?

But a more whole person approach to evaluating suffering can pose challenges. Here are  two suggestions on how to tackle this subject.

Natural Language Processing

The words we use matter and express a lot about our cognitive and emotional states. When we talk about things like subjective suffering, as framed in the MHSA, a qualitative approach is virtually required. It can be burdensome to conduct a robust qualitative analysis (Believe me, my dissertation was qualitative), but advances in technology, like natural language processing (NLP) can speed up the process while also helping ensure all voices are heard.

As an example, many organizations already get consumer (and family member) feedback via written responses, grievances, compliments and focus groups. Well-established NLP includes sentiment analysis, which provides a quick quantitative sense of how people feel about something. A common tool in retail, sentiment analysis can be useful for stakeholder feedback, public comment periods and experiences of care. Diving deeper, NLP can pull out themes and trends that do not depend upon a person catching the right phrases and interpreting the feedback. Frankly, it can be easy to accidentally skip over a part of a response, misinterpret it, or not catch a subtlety that advanced analytics can assist in identifying. Pair those results with human wisdom in interpreting the meaning of the themes and trends, and more voices have been heard in their own words for greater impact!

In today’s quantitative world, we often shy away from the qualitative for many reasons. NLP can help bridge the gap and give rich life to our understanding of people’s lives. It’s one of the best ways, in my view, of seeing the whole person.

Whole Person Analytics

As the Chief of Behavioral Health Informatics at the San Bernardino County Department of Behavioral Health, I led systemwide strategy to evaluate outcomes. We spent many hours talking about how to tackle subjective suffering. Our solution was to not focus on just a single metric, but at least two data points. Symptom reduction could be one, but there had to be another metric along with it, such as improvements in hope. If someone had improvements in hope AND improved symptoms, for instance, the chances of reducing suffering is likely.

Oftentimes, we focus on a single data point as our metric. There’s good reasons for this. But it can be limiting and inaccurate, especially when we try to get at concepts like suffering. Combining data points together to get a more whole person perspective will give us a better sense of what’s really going on in our communities and with the people we serve.

A major question with these suggestions is how to get the data I suggest. Head over to my LinkedIn article, "Data sources to assess whole person suffering" for initial thoughts on potential data sources.

Stigma and discrimination reduction are major themes of Mental Health Month. Let’s use data for good to tell a more complete, accurate story of people’s lives, suffering, recovery, resilience, and wellness!

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About Author

Josh Morgan

National Director of Behavioral Health and Whole Person Care

As SAS’ National Director of Behavioral Health and Whole Person Care, Dr. Josh Morgan helps public sector health agencies use data and analytics to support a person-centered approach to improving health outcomes. A licensed psychologist, Dr. Morgan was previously San Bernardino County Department of Behavioral Health’s Chief of Behavioral Health Informatics. His clinical work includes adolescent self-injury, partial hospitalization, and intensive outpatient programs, psychiatric inpatient units and university counseling centers. Dr. Morgan earned his Bachelor of Arts in Religious Studies from the University of California, Berkeley, and a PsyD (Doctor of Psychology) in Clinical Psychology with an emphasis in Family Psychology from Azusa Pacific University, and is trained in Dialectical Behavior Therapy.

4 Comments

  1. I always enjoy your posts, Josh. Thanks for sharing. I think the direction you're heading in terms of "suffering" is quite similar to that of positive psychology. Just as the presence of symptoms doesn't necessarily imply suffering, neither does their absence imply well-being. Interesting to say the least, but I'm not sure NLP offers anything more than quantitative symptom measurement. You just move the rater from the individual suffering the symptoms (quant) to the algorithm flagging the language (qual). Whole person data and analytics is a great approach, but one that is probably inaccessible to many.

    Thanks as always.

    • Josh Morgan
      Josh Morgan on

      Great comments and considerations, Loren (as always :) ). I would definitely like to think that my definition of suffering aligns with the positive psychology perspectives. Definitely been influenced by that movement as well as the existential psychology predecessors.

      Under some circumstances, I think you're absolutely right that NLP would "just" be another way of quantifying symptom measurement. It all depends on the narratives we collect, which of course relates to the questions we ask, influenced by our definitions and priorities. Hopefully the narratives would represent more holistic experiences of people. Even if they're targeted at pathology and symptoms, there may be more latent experiences that could be pulled forward with things like NLP. But your caution is critical!

      Also agree that whole person data and analytics is inaccessible to many at this point in time because we have so many siloed systems (and questions that are asked in the first place). I'm seeing more and more interest in finding value in gaining a more whole person view, though. The more we can help our communities, policy makers, funders, etc. that there is great value in a whole person data approach, then more people and organizations will have access to a whole person data and analytics platform. That will empower even more insights!

  2. Al trabajar con personas que experimentan varias crisis, notamos que algunas de comparar creditos ellas están retrasadas en un estado disfuncional y de sufrimiento y como si ni siquiera estuvieran particularmente interesadas en salir de este estado. Es decir, pueden decir que esta condición no les conviene, pero en realidad no hacen casi nada para superarla. ¿Cuál es la razón de este comportamiento?

    • Josh Morgan

      Thanks for your comment. Since I'm not fluent in Spanish, some of your message and my response may be lost in translation--apologies for that.

      My understanding of the question is that many people who are experiencing problems, including suffering, crises, etc., may not want to be in that state, but also do nothing to change their state.

      There's multiple potential reasons for this kind of behavior, and they can all exist at the same time. Here's five common reasons I see:

      1. Hopelessness. A person may be in pain and not have any hope their situation can change, so they become passive. This is not what is meant as acceptance of a situation from my perspective, as referenced in the article. But we can have empathy for these situations as well. Imagine if you're in a very difficult position and have no hope of it changing. How easy is it to change things? Especially if there is a lack of energy and motivation anyway. Hope is an area I'm particularly passionate about promoting in my other whole person care work, as it's such a critical driver of behavior and outcomes, as well as being strengths-based. However, we overlook the power of hope.

      2. Lack of skills. This is also often overlooked and can be tied to hope. If we're in a bad situation but don't know how to get out of it, it's hard to do anything differently. And that can lead to hopelessness. Giving people new skills to assist coping can be hugely helpful. I would think of the metaphor of someone being in a literal pit. If they don't have climbing skills and equipment, it may be truly hopeless to climb out. Give them new skills and equipment, and behavior can change.

      3. Lack of motivation/energy. This can be a symptom of various disorders, including Major Depressive Disorder that people don't realize. Having no energy and motivation makes it really hard to do anything different. Treating the disorder can positively impact these symptoms. Sometimes giving someone skills is a way of treating the disorder as well. Dialectical behavior therapy focuses on this, as an example. This also emphasizes how all these points can intersect with each other.

      4. Not seeing the need for change. This can happen for a variety of reasons and is different from point #3. There is a whole field and protocol called Motivational Interviewing (MI) that is focused on helping people build motivation for seeing a problem as a problem and wanting to change. There are a lot of adaptations of this, and we have to be careful not to impose our sense of problems on someone else. They may just have different priorities. Compassion is important here as well, since we all have behaviors that are unhealthy, but we're not motivated to change them for a variety of reasons. Dr. Xavier Amador established the LEAP model, which I see as being in alignment with MI, especially focused on family members of folks with severe mental illness who don't see themselves as ill or needing to change at all. One of his books is entitled, “I’m Not Sick, I Don’t Need Help.”

      5. Other barriers to change. Oftentimes, there are things in our environment that are the barriers to change/help. Sometimes it's our health systems. We frankly put up a lot of barriers to people seeking help, including needing to call the right number, wait a ton of weeks, share private information with complete strangers, and even being rude to consumers. Sometimes it's other issues, like transportation, access to quality food, social support, etc. And kind of like with #4, there may be other things that are bigger priorities. I may be in pain, but if I can't afford to take time off of work to seek help, that's a very legitimate barrier to change.

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