Socially constructed and structurally conditioned conflicts in territories of medical uncertainty

[Tom Kindlon]

Free full text:
https://link.springer.com/article/10.1057/s41285-018-00082-w


Social Theory & Health

pp 1–17 | Cite as

Socially constructed and structurally conditioned conflicts in territories of medical uncertainty

• Authors
• Authors and affiliations

• Olaug S. Lian
• Catherine Robson

Abstract
In territories of medical uncertainty, clinical encounters are highly contentious. To uncover maintaining mechanisms behind persistent conflicts, we explore the interactional dynamics of clinical encounters fused with medical uncertainty. Based on a thematic qualitative analysis of experiential texts from 385 people living with medically unexplained physical symptoms in Norway, UK, Ireland, USA and Canada, we explore patients’ main expectations, how these expectations are met, and how their expectations and experiences are socially constructed and structurally conditioned. Five fundamental expectations are identified: Health professionals ought to (1) acknowledge the lack of medical knowledge, and be frank, open and curious about it; (2) believe patient experiences and accept their condition as “real”; (3) avoid blaming patients for their ailment; (4) demonstrate compassion, understanding and respect; and (5) share decision-making power with patients. Our participants experience unfulfilled expectations in all five areas. Both experiences and unfulfilled expectations are influenced by structural factors transpiring from the modern Western biomedical paradigm, and from cultural norms and values of its surrounding society. Structural and cultural forces obstruct team-oriented collaboration based on congruent understandings, mutual trust and reciprocated respect. Without such contextualisation, the interactional dynamics between patients and health professionals in clinical consultations cannot be exposed.

Keywords Medical uncertainty · Medically unexplained illness · Patient
experiences · Clinical consultations—interaction · Non-epileptic seizures · Chronic
fatigue/myalgic encephalomyelitis

Data and participants
Dataset 1 consists of 256 participants. The data were generated from an open-ended question included in an email survey conducted in Norway in April–May 2013. Participants responded through an online system administered by a national centre for research data. Prior to distribution, the questionnaire was systematically tested and piloted among 143 people belonging to the targeted group. Invitations to participate were distributed to 811 members of the Norwegian ME-Association with known email addresses (about 40% of all members).

 

[Unable]

Very good to see that written down

Now - change?

 

[Kalliope]

The main author, prof. in sociology Olaug Lian, published in 2015 "United we stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community

Abstract
In this article, we report on a study that seeks to explore how the contested chronic condition myalgic encephalomyelitis (ME), one of the current medical diagnoses for medically unexplained long-term exhaustion, is negotiated within the context of Norwegian internet sites. From an analysis of discussions on 14 internet forums sustained by and for people living with ME, we seek to understand how their online activity sustains a virtual symbolic community (VSC). After exploring the content on these sites, we identified four discursive domains, or fields of conversation, that are demarcated by a discursive frame, or norms, values, and goals that define and reinforce the boundaries of the community. Interpreting discursive domains and their discursive frame provides insight not only to the culture of the ME VSC but also to its role in an international social health movement, including its potential for becoming politically influential.

 

[Kalliope]

Through positive and negative descriptions, our study participants articulate—directly or indirectly—the same basic expectations and experiences. Regarding expectations, the core message that runs through both datasets is that caregivers ought to

1. acknowledge the lack of medical knowledge; be frank, open and curious about medical uncertainties, and approach their condition with an open mind and a willingness to learn more (and above all, do not profess knowing what is not known);
   
2. believe patient experiences and the reality of their illness;
   
3. avoid moral blaming of patients;
   
4. treat patients with human dignity by demonstrating confidence, trust, respect, compassion, sympathy and understanding; and
   
5. share decision-making authority with patients in a collaborative partnership.
   

 

[Kalliope]

I wish it could have included something about why a disease like ME hasn't been prioritised in medical research and thus was doomed a faith as medically unexplained. I also miss a critical discussion about the term "medically unexplained" (I've just skimmed the article, perhaps it's included and I just missed it)

 

[ME/CFS Skeptic]

I also miss a critical discussion about the term "medically unexplained"

IMHO, This is the only method in which the category of medically unexplained physical symptoms makes any sense. Instead of speculating about a common underlying cause (somatization, stress, central sensitization), the study investigates the challenge to deal with medical uncertainty.

There are some interesting quotes in this article:

"Participants acknowledge the lack of medical knowledge about their illness, and they expect health professionals to do the same."

[...]

ME patient: "Why can’t doctors simply admit that they know little about this – instead of humiliating and mocking the patient when they are uncertain?"

[...]

“Participants’ strongest aversion is against health professionals who claim to know what is not known by proclaiming psychogenic explanations of their illness, or characterise it as fake or non-existent.”​

I hope a lot of doctors/researchers will read this. Too bad it has a weird title with abstract terminology as used in sociology.

 

[Tom Kindlon]

Through positive and negative descriptions, our study participants articulate—directly or indirectly—the same basic expectations and experiences. Regarding expectations, the core message that runs through both datasets is that caregivers ought to

1. acknowledge the lack of medical knowledge; be frank, open and curious about medical uncertainties, and approach their condition with an open mind and a willingness to learn more (and above all, do not profess knowing what is not known);
2. believe patient experiences and the reality of their illness;
3. avoid moral blaming of patients;
4. treat patients with human dignity by demonstrating confidence, trust, respect, compassion, sympathy and understanding; and
5. share decision-making authority with patients in a collaborative partnership.

I've highlighted that now:

 

[DigitalDrifter]

• acknowledge the lack of medical knowledge; be frank, open and curious about medical uncertainties, and approach their condition with an open mind and a willingness to learn more (and above all, do not profess knowing what is not known);

• believe patient experiences and the reality of their illness;

• avoid moral blaming of patients;

• treat patients with human dignity by demonstrating confidence, trust, respect, compassion, sympathy and understanding; and

• share decision-making authority with patients in a collaborative partnership.

Our data are limited to two subgroups of MUPS-patients: medically unexplained long-term fatigue (often named Myalgic Encephalomyelitis—ME, or Chronic Fatigue Syndrome—CFS), and medically unexplained seizures (commonly labelled psychogenic non-epileptic seizures—PNES, or non-epileptic attack disorder—NEAD).

The stories of our ME-participants mirror cultural views on tiredness in our culture. Our cultural norms define tiredness as a sign of weakness; the norm is to be energetic, tough, strong and endurable (Widerberg 2005)

I'd like to add two points of my own:
6) Stop conflating ME with fatigue.
7) Believe that patients can get permanently worse by being pushed beyond their threshold.

 

[Sean]

8) Patients have a right to question and refuse treatment.