Category Archives: Ethics

Participatory medicine

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.

History of Medical Failures

Where to start!? Leaches, blood letting, pretty much everything doctors did in the pre-modern period…

Thalidomide and birth defects, of course. But unforeseen.

X-rays for pregnancy monitoring. Took years before people paid attention to the alarms. X-rays were also used for tinea capitis – not just brain tumours, strokes and ischaemic heart disease about 30% higher too.

Ribavirin (via SPAG machines) for RSV. Not harmful, just useless and expensive.

Iron supplements for preterm babies – increased sepsis.

GIRFEC

Getting it right for every child. A framework for dealing with children and young people, looking at a range of values (SHANARRI).

Children and Young People (Scotland) Act 2014 made provision for Named Person and Child’s plan, but after review in 2019, amid privacy concerns (brought by Christian Institute, among others), government decided not to pursue legislation. Supreme court found that “duty to share information”, although well intentioned, was potentially at odds with article 8 of European convention on Human rights (“Privacy and family life”).

[https://www.gov.scot/publications/getting-right-child-practice-development-panel-report/]

Remote consultations – use of images

Clinical images are part of the medical record. Especially when they are being used to make clinical judgments, they should be retained, which means discussing transfer, storage and use of images.

Transfer – not subject to information governance and data protection rules until received! Whatsapp automatically uses end to end encryption.

Storage – needs to be deleted from your phone/device. NB Whatsapp has option to automatically save to phone. Arrange storage with NHS approved service, or else ask family to retain.

Use – needs specific consent to reproduce in any form, for specified purpose.

Document verbal consent.

If patients are unsure of sharing images, you could try sending illustrative images of the suspected condition.

Doctor-patient communication

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, 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]

“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]

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.

Safety Nets

Top tips for safety-netting

  • Be specific in the advice given – ‘If xxxx happens, please ring the surgery or out of hours provider immediately.’
  • Provide a likely timescale for when you believe symptoms should have resolved – ‘Your cough should clear up soon if it’s due to the chest infection. If it’s still there in two weeks, please book an emergency appointment to see me.’
  • It can be helpful to book an appointment for follow up yourself. Telling a patient you’d like to book them in to review their progress in a couple of weeks is safer than just saying, ‘book an appointment if it’s not better.’
  • Consider giving written information and patient leaflets to reinforce verbal advice.
  • Document the specific advice, given rather than simply saying ‘advice given’.
  • Check that patients are aware of how to access advice if you’re not available, such as by giving the number of the Out Of Hours provider.
  • Bear in mind the need to re-assess if symptoms are not settling, or if there is no response to the treatment you have given. Be prepared to reconsider an earlier diagnosis.

[Sarah Jarvis, MDU]

LGBT issues

Sexual orientation vs sexual practices vs gender identity.

“Coming out”  means primarily acknowledging your own lesbian, gay, bisexual or transgender identity to yourself.  Coming out to others is not a one-off experience, LGBT people have to make decisions on whether to (or not) disclose, often on a daily basis. This can be an ongoing source of stress and distress.  Heterosexism – assumption of heterosexuality, +/- judgment of its superiority in terms of moral value.

Harassment in the workplace can lead to the organisation and/or the individual being found liable and having to pay compensation.

The umbrella term transgender includes transsexual people and transvestites.

A trans-man is someone who transitions from a female label at birth to a male gender identity.  When the transition is complete, their trans identity could be considered a part of their past medical history, rather than an on-going identity.

Trans vestites (medicalized? “Cross-dressers” better?) have no desire for any permanent transition but enjoy aspects of the opposite gender and may have a temporary identity including a different name.

Trans sexual protected under Equality act by EU gender directive 2007.

It is the impact on the individual that determines whether bullying, harassment or discrimination has occurred, not the intentions of the perpetrator.

Gender recognition act 2004 allows trans sexual people to apply for full legal recognition of their acquired gender (evidence must be provided).  It is also a crime to disclose previous gender without express permission.

Under legislation it is also illegal to discriminate against someone on the basis that they are heterosexual!

[Good LGBT practice in NHS document, Stonewall Scotland]

Parenting and permanence orders

Permanence order is mechanism for local authority to apply for parental rights and responsibilites to be removed from parents.

Not specifically detailed in law (2007) but “threshold test” must be satisfied:

  1. living with parent poses threat of serious detriment to welfare of child
  2. the need to safeguard and promote welfare of child is paramount consideration
  3. that it is better for the child that the order be made, than that the order not be made

Supreme Court decision In the matter of EV (A Child) (No 2) (Scotland) 2017 –

Not duty of parents to prove parenting ability, but for social work to prove lack of ability with full assessment (or adequate records and sworn evidence of non-engagement).

Also, although allegations of harm may be sufficient reason to place child in care, not sufficient for seeking “permanence order”.  Given that this may mean waiting on criminal proceedings to be completed, children may be stuck in hearing system for longer than before.

[https://andersonstrathern.co.uk/news-insight/supreme-court-permanence-order-decision-lessons-learned/]

 

Bawa Garba case

High Court ruling regarding Dr Hadiza Bawa-Garba following the tragic death of a 6-year-old boy in 2011. Subsequently convicted of manslaughter. Removed from the GMC register, although Medical Practitioners Tribunal Service (MPTS) decision was to suspend for a year.  GMC appealed, saying it had not taken into account the manslaughter conviction.

High Court then overturned erasure, saying that tribunal did not commit any errors in its procedures, and therefore its conclusions were valid.

The trust acknowledged systemic failures, so why the vindictiveness? Its report into the death (“no single error responsible for death”) was not brought before jury, as being beyond scope of the trial! Not lazy or under influence, rather, took on extra duties in overstretched hospital with very little supervision.

And since when was gross negligence manslaughter law the right way to deal with errors made by doctors in training?

Why not corporate manslaughter case against trust?

Concern about reflective notes being used in court – despite being confidential? Used in support of Dr Bawa-Garba to show remediation efforts.

Twitter response from consultants was to emphasise “WE are responsible – so long as you tell us what’s going on”.

Subsequently 2 reviews –

  • Marx review by GMC
  • Williams review by government into medical gross negligence.
    • Suggested that GMC lose right to appeal Tribunal decisions.  Most of these appeals have been regarding sexual misconduct cases.  Professional standards Authority would still be able to appeal.
    • Suggested that GMC not be allowed to access reflective notes eg portfolio.  Could still be used as evidence in prosecution, however, not clear whether would help defence or prosecution more
    • Touched on high rate of cases involving black or minority ethnic doctors, but did nothing other than suggest BAME representation in investigations
    • Recommends explanatory note for gross negligence law, to improve consistency.  Law remains the same, however

Insurance and genetic testing

You have to answer truthfully any question you are asked when applying for insurance.  You do not need to volunteer information not asked for!

The Government and the ABI have a policy framework (‘Concordat’) for cooperation that includes a voluntary Moratorium on insurers’ use of predictive genetic test results (NOT diagnostic tests) until 1 November 2019, (to be reviewed in 2016).  So for most tests, companies cannot force test before providing cover, customers do not need to disclose result while insurance in place, and do not need to disclose results of blood relatives.

Only one exception currently, for cover above £500 000 and Huntingdons.  Certainly no need for time limited policies eg travel, private medical care; really just for life insurance, critical illness and income protection. Recognition that increased risks of a small minority can be mitigated by larger population of policies [2014]  Evidence from US is that significant proportion conceal their diagnosis.

Asymmetry of information—when the customer knows more than the insurer—is the industry’s nightmare.  Testing positive for ApoE4, a mutation of a gene related to increased risk of Alzheimer’s, would be a good reason to get life insurance before symptoms develop.

See also ethics.