Category Archives: Patients

Liminality

Generic, Health Literacy, Patients

Liminality in medicine is the idea that you can be between illness and wellness.

Paul Turner et al give the example of having a food allergy: people with allergies do not consider themselves fully ‘ill’ or entirely ‘well’, but something in between. They are typically “well” so long as they apply food safety skills to avoid their trigger food(s) – but a slip or mistake can lead to a reaction and potentially death from anaphylaxis.

With liminality, a young person feels set apart, or a family feels their child is different from others – this can impact on self image, social interaction, which in turn can lead to denial or other unhealthy coping strategies and adverse health outcomes.

[Sanders, Soc Sci Med 2019]

Non traditional medicine and alternative health beliefs

Communication, Ethics, Generic, Health Literacy, Patients

Non-disclosure of use of traditional, complementary and/or alternative medicine (TCAM) is found in 20 to 77% of studies. This has been attributed to an anticipated negative or dismissive response; assumption that health care professionals lack knowledge on the subject; or the HCP not asking.

HCPs who take the time to listen attentively and respectfully are more likely to have patients disclose TCAM use.

Some cultures/religions are more likely to use TCAM, and are also more likely to suffer from heath inequalities and stigma. If seen as ‘alternative’ and contrary to mainstream medicine, discussion might be perceived by both patient and doctor as irrelevant. If perceived within a more ‘integrative’ framework, it is more likely that TCAM use will be a topic for discussion. The transition from a “traditional-alternative” to a “traditional-integrative” approach to care is being promoted by the World Health Organization’s Traditional Medicine Strategy (2014–2023).

Tangkiatkumjai et al. suggested that TCAM use can be accompanied by an expectation of benefit; perception of safety; and dissatisfaction with conventional medicine. Perception of safety can of course be very misguided, eg interactions between herbal products and cancer drugs.

In oncology, integrative programs focus on quality of life-related concerns, eg chemotherapy-induced peripheral neuropathy, preoperative anxiety and postoperative pain. These programs have been shown to increase patient adherence to oncology treatment regimens, within a safe and effective environment.

Patient trust in their HCP has been shown to increase when asked directly about TCAM use.

Try the LEARN (Listen, Explain, Acknowledge, Recommend, and Negotiate) model, proposed by Berlin and Fowkes.

Non-judgmental approach essential – stereotypes, prejudices, and misconceptions may compromise the therapeutic relationship.

Other family/community voices that can be included?

“What are your goals of treatment with TCAM? Is your primarily goal to relieve your symptoms and improve your quality of life? Or is it to “fight” or cure the disease, prolong life, “strengthen” your immune system, or another goal?”

[Humility about failures/faults of conventional medicine!] [Ben-Arye, 2024]

Letters to GPs

Communication, Generic, Patients

2020 interview study with GPs in the Midlands –

Giving letters to patients has benefits of a sense of patient inclusion, increased patient understanding, patient autonomy, enhanced communication transparency. The letter can act as a memory-aid (for example, medication). Paper-held summary may also act as a physical record of the admission for future encounters and communications, particularly if the patient sees a team who do not have access to the letter (for example, out-of-hours GP).

But if discharge letter is no longer simple summary, but exercise in patient education. GP then has to wade through a lot of excess information.

Letter to patient can alarm patients (especially if inaccuracies), language barriers and patient low literacy lead to health inequalities. GP may be asked to explain letters to patients. Ethics of cases where the diagnosis had not been disclosed, confidentiality breaching if the letter contains third-party information or if patient loses the letter. Patient can be upset by sensitive issues (eg, obesity).

Tips therefore include:

  • Give patient choice regarding getting letter
  • Give patient an abbreviated/edited version
  • Include simple interpretations of results (“normal”, “satisfactory”)
  • Insert a patient information section

Common gripes:

  • Hidden Actions: Critical requests (e.g., ordering blood tests or prescribing new drugs) are often buried in paragraphs rather than clearly itemized.
  • Missing Information: Letters frequently omit the specific rationale for medication changes or leave out essential physical measurements or mental health assessments.
  • Jargon and Acronyms: Traditional letters are often written with heavy medical terminology. This confuses patients who then book GP appointments just to have the letter explained.
  • Delays: Administrative backlogs and IT glitches often mean letters arrive too late to safely guide a patient’s ongoing primary care.

What GPs Actually Want:

  • A Dedicated Action Section: GPs overwhelmingly prefer structured letters that feature a bolded “GP Action” or “Please Consider” section at the very beginning or end.
  • Concise Formatting: Because GPs spend less than a minute reading most routine letters, they favor bullet points and standardized headings for diagnoses, management plans, and required investigations.
  • Direct Communication with Patients: Medical organizations like the Academy of Medical Royal Colleges heavily promote writing clinic letters directly to the patient (in plain English) while copying in the GP. This saves GPs time and boosts patient understanding

Autonomy

Communication, Ethics, Generic, Patients

Autonomy is relational. A credible choice cannot be made without an appreciation of one’s situation and all the variables. That does not simply mean provision of information and options, because there is more going on in the consultation room, perhaps unexpressed: fear, shame, sadness, anger, doubt.

Time matters. Immediate impulse may not be how you ultimately decide if information shared in a paced, careful, caring, gentle way.

Don’t underestimate the power of written leaflets! Nothing compares to being able to explore in your own time, in your own home.

Being in touch with others who have navigated the same territory themselves is a uniquely therapeutic contribution when having to make choices in circumstances no one would choose.

Autonomy is not solely intellectual. To be vulnerable enough to express fears, to be confident enough to convey personal priorities, to be respected enough to have questions answered truthfully depends on trust in other human beings.

(Deborah Bowman)

McCulloch case

Communication, Ethics, Generic, Patients

Clarifies an aspect of the Montgomery decision in a way that supports healthcare professionals getting consent. The decision can be found here.

In Montgomery, the Supreme Court said that a doctor ‘is under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment and of any reasonable alternative or variant treatments’. In the McCulloch case, the Supreme Court was asked to decide what legal test was applicable when assessing whether an alternative treatment was ‘reasonable’. Was it the Montgomery test or was it the Hunter –v- Hanley test? Put another way, was the decision about whether to discuss an alternative treatment with a patient one of clinical judgement, or was it one for the Court to assess and determine?

The decision was that a doctor (or other healthcare professional) who has decided that a treatment is not a ‘reasonable alternative treatment’ for a particular patient will not be negligent in failing to inform the patient of that alternative treatment if the doctor’s view is supported by a responsible body of medical opinion. In other words, this decision involves an exercise of clinical judgement and any challenge to that decision by a patient is therefore to be determined by the Hunter –v- Hanley test. In the circumstances of the McCulloch case, the application of that legal test resulted in the claim being rejected by the Court.

The court said this:

“Taking a hypothetical example – say that there are ten possible treatment options; the doctor, exercising his or her clinical judgment, decides that only four of them are reasonable and that decision to rule out six is supported by a responsible body of medical opinion. The doctor is not negligent by failing to inform the patient about the other six even though they are possible alternative treatments.

“The narrowing down from possible alternative treatments to reasonable alternative treatments is an exercise of clinical judgment to which the professional practice test should be applied. The duty of reasonable care would then require the doctor to inform the patient not only of the treatment option that the doctor is recommending but also of the other three reasonable alternative treatment options (plus no treatment if that is a reasonable alternative option) indicating their respective advantages and disadvantages and the material risks involved in each treatment option.”

[Michael Stewart, Central Legal Office]

Medical Professionalism

Ethics, Generic, Patients

“We teach good communication skills because we accept not everyone has them. But we also need to teach professionalism… We’re happier to challenge poor clinical skills, or to point out a gap in knowledge, than to have a conversation about behaviour or attitudes.”

“We expect learners to improve and progress.  So, by implication, they’re not perfect professionals: they can make mistakes.  It gives people permission to say, “That doesn’t look professional”.”

“We need to work on accepting  constructive feedback for unprofessional behaviours… We want a positive culture, where we teach people to speak up to promote professionalism.”

[Sheona MacLeod, BMJ 2020;368:m768]

Easier to spot when people are being unprofessional than to teach professionalism!

Which makes me think the issue is conflicting values/priorities rather than not knowing what is “good medical practice”.

So dress codes become an issue when someone’s need to express their individuality or fit in with their peer group clashes with public perceptions of what a health care professional should look like.

Or someone complaining about their work place on social media is wanting to assert their independent spirit even as an employee, perhaps also their right to self expression and to attract “likes”.

And professionalism is clearly performative. We can swear all we want in our heads, but to swear out loud (in most cases) would be considered inappropriate. Which also potentially makes class an issue.

Expectations (of the public but also our peers) change over time. Consider suits, white coats, ties, scrubs. Consider also #medbikini twitter controversy – an article by men describes social media posts of women doctors in bikinis as potentially unprofessional.

Rosenthal 2011 – humanism and professionalism student module included blogging about clerkship experiences, debriefing after significant events, and discussing journal articles, fiction, and film. Main focus however was on empathy.

Scott Oliver and Kathleen Collins described differences in attitudes between medical school students which appeared to suggest a hidden curriculum. Students with more knowledge focus failed to identify potential issues of confidentiality, ethics or trust. Students who had not explored such issues struggled to know how to approach such issues even if they did recognise them.

Definition is probably best medical practice but also the duties and responsibilities of being an employee. High level morals/values (as in GMC good medical practice) are uncontroversial but also hard to then produce policies from (and which can then be defended in court when issues arise).

Clearly some personalities can be more playful, or disagreeable, which are not necessarily negative (cf engaging, whistleblowing) so perhaps more about defining the outer limits rather than homogenizing behaviour.

Surveillance capitalism; social dilemma documentary (mental health declines with higher use; disinformation campaigns; extremism encouraged by algorithms)

Social media is performative (Erving Goffman – the presentation of self (name of his book), life as theatre (metaphorically- although some say actual)). 

MedTwitter – now X of course 

Human face vs personality cult and influencers

Social media hygiene. 

Modelling in absence of “official” voices. 

Self curation of brand. Bordieu’s social capital. 

How to teach?

Learn through active reflection on work based learning (cf how artificial PBL etc are).  Think about values, how they shape communication.  Modelling of democratic values.  Appreciation of complexity of communication.

[ Alan Bleakley, Peninsula medical school – Homer as evidence of honour/shame/face directed behaviours, cf feminine, guilt directed behaviours etc]

“We teach good communication skills because we accept not everyone has them. But we also need to teach professionalism… We’re happier to challenge poor clinical skills, or to point out a gap in knowledge, than to have a conversation about behaviour or attitudes.”

“We expect learners to improve and progress.  So, by implication, they’re not perfect professionals: they can make mistakes.  It gives people permission to say, “That doesn’t look professional”.”

“We need to work on accepting  constructive feedback for unprofessional behaviours… We want a positive culture, where we teach people to speak up to promote professionalism.”

[Sheona MacLeod, BMJ 2020;368:m768]

Medical Humanities

Communication, Ethics, Generic, Patients

In education, Johanna Shapiro has done interesting work, for example including relevant poems into objective structured clinical examinations (Female, by Ingrid Hughes, about a woman facing a probable diagnosis of breast cancer; Dear Left Knee by John Davis; Back Pain, by Ingrid Hughes; Night on Call, by Dr Rita Iovino). A large proportion said they felt it increased empathy, and had a significant effect on how they might present bad news, on the ultimate treatment plan. Most felt the Night on call poem helped gain perspective. [Medical Education 2005]

In the same paper, adding some readings led students to say (in 1/3 to 2/3 of cases) that they would be more likely to take into consideration psychosocial insights, or that it increased some dimension of empathy for the patient, including helping them take the patient more seriously.

Themes written by doctors or medical students are commonly about the rewards and stresses, relationships, role models, death, the meaning of life – things not directly addressed in the curriculum.

The quality is less important that the utility to a particular audience.

[BMJ 2010]

Participatory medicine

Communication, Ethics, Generic, Health Literacy, Patients

Patient led campaign for better involvement of patients in their own care.

Manifesto has 5 principles:

  • Share and listen – acknowledge patients are experts in their own lives and bodies, use plain language.
  • Respect one another
  • Share information responsibly – help patients access the information they need, and respect confidentiality
  • Promote curiosity – be clear even when it is difficult to explain, encourage patients to do their own research and get involved in patient communities
  • Be a teambuilder – treat patients as collaborators, respect their goals, values and preferences

These are shared responsibilities, the patient has their own duty to be honest, ask questions, advocate themselves.

Institute of Medicine describes a continuously learning system (in respect of healthcare in the US), the second feature of which is Patient-clinician partnerships. This is explained as “engaged, empowered patients – a health care system anchored on patient needs and perspectives, and promoting the inclusion of patients, families and other care givers as vital members of the team“.

Unclear this happens on any significant level, especially when it comes to communication outside the hospital or clinic room. Studies have found that when patient portals or messaging systems are used, patients often respond with further questions or comments, which suggests unmet need and desire to engage further. Other studies have found that only a tiny minority of messages in such systems are initiated by the health care team, which suggests a reactive rather than active contribution to the partnership.

Expert patients

Communication, Generic, Patients

Idea came from Prof Kate Lorig, rheumatologist in US. Trained lay educators had better outcomes than conventional clinic appointments. In 2001, became an NHS programme, aimed at cutting costs of chronic disease.

Technology has aided this massively – see “E-patients“. But of course variations in access to technology and tech literacy.

Survey of UK public found 42% had read online healthcare feedback esp researching treatment, drug, test. Mostly younger female, high income, high internet use.  Only 6% of public remember being asked to give feedback on health care experience – ever. 28% of doctors aware of feedback relating to an episode of care they were involved in. This shows a lack of organisational preparedness, given government policy paper for future of data and online services in healthcare. 

Patient centred networks not well understood. Can have links to health professionals, but can also be tied to industry/commercial interests, may even be driven by industry.  Online resources scored higher with e-patients for convenience, emotional support, empathy, death and dying, in depth medical information, practical help.  Specialist physicians rated highest for diagnosis, technical knowledge (just), managing condition after diagnosis.  So online resources score highest where medics poorest and vice versa.  So combination of both ideal!  Also, medics come and go.  Some patient groups have published their own research eg GIST group.

But behaviour change, specifically when talking about self-efficacy, is very individual and psychology focussed. Less exploration of social influences, other than focus on peer modelling.

Foucault, of course, was fascinated by how people can become obedient, self governing, and how this is produced by the efforts of “pastoral power”, in a similar way to the Christian church and the process of confession.

Trisha Greenhalgh would say that although collaboration between patient and doctor is important, it’s still just one aspect of a whole system that includes community, material conditions, law/policy, social deprivation, cultural norms etc.

Doctor-patient communication

Communication, Ethics, Patients

Verbal, non-verbal and paraverbal (tone, pitch, volume) [Ranjan 2015].

Consultations – patient’s opening chat is interrupted by their doctor after mean 18 secs.  Patient talk for 40% of total consultation time, estimated by doctor at 60%.

Wayne et al 2011 – less info given to poorer and minorities, more dialogue and more informative with better educated, more literate patients

Neumann 2011 – decline in medical empathy: significant through medical school,  further declines through residency.  “Hidden” curriculum? Hardening/cynicism? Rosenthal 2011 – humanism and professionalism student module, no decline in 3rd year student empathy.

Chen 2012 – empathy associated with women, non-technological specialty preference, high debt!

Roter and Hall 2006 – doctors like to retain authority but poor at managing confrontation (eg eye contact) and picking up emotional cues of distress

Psychodynamic approach – counter transference (disgust, judgemental), counter resistance (non-compliance).

Narrative as diagnosis!  William Osler – the diagnosis is in the story.

Communication and teamwork “skills” underestimates complexity, the affective component.  Only learned if valued, rather than as something to be acquired. 

“Heroic individualism” valued in medicine, cf dialogue.

Students struggle to make conversation with patients!  Fear of intrusiveness, failure to connect medical issues with psychosocial elements.

Best – learn through active reflection on work based learning (cf how artificial PBL etc are).  Think about values, how they shape communication.  Modelling of democratic values.  Appreciation of complexity of communication.

[ Alan Bleakley, Peninsula medical school – Homer as evidence of honour/shame/face directed behaviours, cf feminine, guilt directed behaviours etc]

Participatory Medicine

Outside of the consultation, doctor-patient communication becomes a mixture of formal and informal, but both tend to be one sided. Formal letters are an essentially one sided message from the doctor to the patient. Informal communication includes requests or questions from the patient to the doctor but again, often one sided as it does not usually lead to a meaningful exchange.

See Participatory medicine.

Oratory

Communication skills are essential to career development, advocacy, leadership. See Oratory.