Health Systems Action

Should Pleasure be a Patient-Reported Outcome?

We measure pain, why not pleasure?

Decades ago, your kindly GP always dispensed comfort if not cure. He knew you since birth, and your mom since she had you. She held your hand and inquired about your vegetable patch, your grandkids, or how school was going. With few tools of modern medicine at their disposal this was the doctor’s stock in trade.

Preston Long and Tanja Stamm, two researchers from Vienna, go beyond advocating for this kind of good “bedside manner”. They argue that pleasure is a vital outcome of health care, that measuring it is therefore necessary and part of a welcome shift in focus from “merely” treating illness to promoting overall wellness. They say a “health-related pleasure” scale for clinical and other uses should be developed.

Is developing a “pleasure PROM” (Patient-Reported Outcome Measure) justified?  What would it look like?

Image: DALL-E

Focusing on what matters to patients

Anhedonia, the absence of pleasure, is an established clinical concept but pleasure as a positive attribute is generally overlooked in the medical context. Surely it’s not a luxury or an afterthought. For if no pleasure, why live?

The Institute for Healthcare Improvement (IHI) recommends a focus on “what matters” to patients. That is, prioritising the patient’s perspective and emphasising individual preferences and values in healthcare decisions, which would target pleasure as a desired outcome?

The US Declaration of Independence is an expression of American ideals and influential in the broader context. It seeks to guarantee “life, liberty, and the pursuit of happiness”.

Image: US National Archives – www.archives.gov

Why including pleasure in clinical assessments might be important

Globally, there’s agreement that health is not just the absence of disease. Perhaps we agree also that experiencing pleasure, and having a sense of joy and contentment, is integral to mental and emotional health. Understanding and measuring this should provide insights for both patients and clinicians into how a patient’s medical condition is affecting their life beyond just physical symptoms. Regular assessment of pleasure levels could increase the early detection of mental health issues like depression or anxiety, which might not be obvious through standard examinations.

In the clinic, asking about pleasure levels could enable more personal and meaningful conversations leading to greater rapport and trust. Doctors and nurses might feel better too – less burnout.

Treatment plans that address medical issues should consider emotional and psychological well-being too. A prescription for a chronic condition could include activities or therapies that increase pleasure and improve quality of life – fishing, a walk in the park, etc. Better patient engagement with treatment and more activation, better recovery rates, and improved ability to manage chronic illness might result.

Photo by Ketut Subiyanto: www.pexels.com

Major illness brings decision choices about length versus quality of that life. These could be clarified by estimating differences in pleasure levels that result from aggressive treatment aimed at extending life, but with significant side effects, versus non-curative approaches that guarantee some pleasures of daily existence, at least for a time.

We routinely measure pain but frequent assessments, when accompanied by verbal suggestions of increased pain, can increase pain (nocebo effects). Perhaps the same effect can be leverage in patients asked about pleasure, but in a positive direction, redirecting the focus away from negative symptoms.

Defining and measuring pleasure

Long and Stamm point out that existing scales such as the Self-Assessment Anhedonia Scale (SAAS) and the Snaith-Hamilton Pleasure Scale (SHAPS) focus on anhedonia and are not designed for typical clinical settings. A new scale is needed.

A standardised questionnaire – a PROM – could assess various aspects of pleasure – emotional, physical, social – using a numerical rating system to rate the level of pleasure in different areas of life. [PROs and PROMs are central to health care outcome assessment and value-based care. I designed and helped build a platform for collecting and reporting them and wrote briefs about what they are and how to implement them].

Pleasure, according to Long and Stamm, is “any positive sensory experience, either momentary (like a bite of food) or sustained (like ‘intercourse’)”. They say a pleasure scale designed for clinical use would “assess a patient’s capacity for pleasure across multiple domains rather than the sources of pleasure”. They also stipulate the following:

  • The source of pleasure is observable through the senses.
  • The feelings associated with pleasure are desire, motivation, and enjoyment.
  • The behaviours associated with pleasure are approach and seeking.
  • Domains often associated with pleasure include hobbies, exercise and physical activity, sensory experiences, food/drink intake, desire/motivation, and social interaction.

Narrative descriptions could complement the quantitative data to provide a fuller understanding of the patient’s experience of pleasure.

Pleasure in evidence-based medicine

A pleasure PROM might be used, like other PROMs, in treatment comparisons, recovery predictions, and side-effect investigations.

A clinical trial comparing treatments A and treatment B results in an equal reduction in disease severity and associated symptoms. If treatment B maintains a higher level of daily pleasure e.g., in the subdomains of social interaction and exercise, it becomes the treatment of choice.

Possible drawbacks of a pleasure PROM

Including patient-reported pleasure as an outcome raises concerns about the subjective nature of pleasure, which can vary greatly between individuals, making it challenging to measure consistently.

The prioritisation of pleasure over clinical outcomes might lead to overlooking critical aspects of medical care.

Integrating pleasure into clinical practice could be seen as complicating already complex medical decision-making processes.

Some pleasures are harmful – over-indulgence in drugs or alcohol, for example – while some forms of pain are necessary or well accepted (e.g. muscle pain after intense exercise). Buddhist monastery practices of thrice daily ice-cold water immersion are not pleasurable, but apparently become more than tolerable when the ability to intensely focus on the experience is developed.

Sometimes measurement is harmful. Formalising the measurement of pleasure could detract from the delivery and experience of care if pleasure PROMs become performance targets, subject to rewards, incentives and penalties.

What would Freud say?

Is it just coincidence that Doctors Stamm and Long hail from Vienna, the home of Sigmund Freud? I think not.

Image: wikipedia – en.wikipedia.org

Freud’s “pleasure principle” posits that people are driven to seek pleasure and avoid pain so he might have appreciated the acknowledgment of pleasure’s role in human behaviour and inclusion of its formal assessment in patient care. The revered founder of psychoanalysis might also be sceptical about the ability to quantify such a subjective and deeply psychological experience.

More pleasure and happiness in medical care – and the global economy

Long and Stamm claim that a “deeply rooted stigma” against the scientific exploration of pleasure exists. It might be time to address this and move towards salutogenesis, even in hospital medicine, even in ICUs, the site of our most intense medical interventions but also places where it is often brutal to be a patient, or a doctor or nurse. In the world at large it seems a good idea to start measuring and promoting Global National Happiness instead of GDP.

References

Long P, Stamm T. The case for patient-reported pleasure. Patient Experience Journal. 2023; 10(3):13-14. doi: 10.35680/2372-0247.1853

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