Learnings from ceding my rights (whilst employed in a role that advocates for the rights of others)

Hamish Kidd

Hamish Kidd works as an Engagement Project Worker (Early Interventions in Psychosis) at Support In Mind Scotland.

My understanding of the word ‘insight’ came from reading texts translated from Sanskrit, and from receiving teachings in meditation. References to metta (compassion) and vipassana (insight) introduced these two overlapping concepts to me. I understood compassion to be the emotional connection to suffering and the desire to alleviate it by responding with kindness. Insight to me means being able to see through the suffering to understand how our conscious and subconscious choices can prevent suffering.

It took me some time to comprehend that the word ‘insight’ was frequently used as part of a negative, and even pejorative term (‘lacks insight’), towards people I considered as peers and equals, by some in the psychiatric profession.  In this regard we are therefore effectively speaking two different languages.

There are also differences in terms of how we judge decisions made in the short-term against the longer-term consequences of those decisions. Any decision to consent to treatment, or to refuse it, needs to consider both the risks and benefits of those decisions. This presents a second distinction in the definitions. In my experience, insight, in the clinical context, looks closely at the individual and their decision-making process. However, insight in Buddhist terms looks beyond the individual; it is a more utilitarian premise. The significance of this second distinction is far-reaching. It considers all of the benefits and risks associated with our choices, and the impact of those choices on ourselves and all others we are connected to.

In Scotland, in 2022, there is a debate about how we address the rights of those who are judged by professionals to have a deficit in their capacity to make informed decisions about matters that affect their lives, including opportunities and power differentials between themselves and those who support them.

One concern I have is that when I have felt vulnerable, I have voluntarily relinquished some of my rights as an individual. I perceived this would offer access to services and more effective alleviation of my distress. I would question whether I had capacity to give this consent. I had no understanding of the treatment risks I was exposing myself to. In Daniel Kahneman's terms (1): my ‘system 1’ was making fast, instinctive choice based on emotion. My ‘system 2’, deliberate, rational thought, took time to recover and reset.

Specifically:

• I was described during my discharge as a “people pleaser.” Whilst this has no empirical basis, or diagnostic significance, I agree with it whole-heartedly. I would, wouldn't I? This interpersonal factor drove many of the choices I made; my passivity meant I sought the path of least resistance.
• There is a clear distinction to be made between compliance and choice. Compliance was perceived by those treating me as consent. Prescribers were quick to initiate new medications to address either symptoms, or side effects. However, it was difficult to discontinue medications, even when the side effects became severe. I complied even though I made a clear choice to stop.
• The consequences of compliance need to be closely monitored. Compliance carries with it both an increased risk of iatrogenic harm and a reluctance by those carrying out treatment to understand and disclose its full implications.

I spent much of my admission reading the BNF (British National Formulary) or hiding from other patients in quiet areas of the ward (It was another 6 years before I was diagnosed with autism.). I understood what I read; the list of side-effects helped me to understand how the medication worked and how it might impact me. However, I lacked the foresight to recognise and understand all of the implications of my choices and how they would impact my ability to function throughout the duration of treatment.

I would like to highlight five specific opportunities for improvement to supported decision making in the future:
1. Agreement to consent to treatment does not equal having capacity. Conversely disagreement does not equal incapacity. Agreement needs to include a full and comprehensive understanding of each of the risks inherent, as they arise. More importantly, disagreement based on identified and valid risks should be considered more seriously by professionals.

2. Prescribers and patients will not always agree about whether new problems are symptoms, or side effects. This grey area is an area of mutual concern, but how it is handled is central in developing trust. The coercive argument that plays out: ‘it can’t possibly be the medication’ versus, ‘it must be the medication’, generates friction and yields little consensus. A more productive approach is to actively screen for, and report side-effects as they occur.

3. Side-effects can be graded in terms of their duration and severity. However, these are clinician reported measures. They often miss the more practical impacts on quality of life and ability to function. For each individual there exists a hierarchy that runs from tolerability to intolerability. My opinion is that this aspect of risk versus reward mediates choice and compliance. I would advocate that only patient-reported outcome measures should inform this decision.

4. The word ‘distress’ has been widely adopted to describe both the emotional and cognitive state of individuals who seek the support and solace of others. For some professionals, distress is understood primarily as indicating an immediate and pressing need to take action. For me, however, both the causes and the relief of distress need to be considered on a longer timeline and take into account the surrounding influences.

5. The term ‘insight’ has been bastardised by modern concepts of sanity. The true definition for me, ‘capacity to alleviate suffering’, includes the concept of trust, the availability of sanctuary from harm and the ability to provide it. I now question whether institutions providing restriction of liberty can be in a position to objectively monitor and report the scale and extent of iatrogenic harm.

In conclusion, I would encourage a process of review and reflection:

• Do prescribed medications benefit the communities we are part of and the people we love?
• Does the approach of prescribing to relieve symptoms burden other areas of the healthcare system? (Is the cost: benefit analysis adequately informed?)

References

(1) Kahneman, D. (2011). Thinking, fast and slow. Farrar, Straus and Giroux.