Online survey of 400 people aged 50-70, only 2.6% of people could explain what overdiagnosis means.
Definition: when a disease is detected that would not cause any harm during the lifetime of the patient.
Without better public understanding, difficult for them to make informed decisions about their health.
Ghanouni et al. A survey of public definitions of the term ‘overdiagnosis’ in the United Kingdom. BMJ Open 7 April 2016.
Has to be voluntary to work! Do both parties want resolution? Can they express reasons for discomfort/distress? Can mediator control and sustain process (needs to be safe)? Are all parties committed to keeping agreement in long term?
“Everybody does that” – groups allow individuals to fail to take responsibility for behaviour.
Ideally fix teams before getting to point of mediating between 2 (or more) individuals!
Issues typically:
Good attention – focus, openness, impartiality, caring, withholding judgment.
Stages – before meeting face to face.
Then write introductory statement before sitting down face to face.
(Andrew Graham, Diane Swanson)
VBRP (Michael patterson)
Reflection vs quality control, reporting back to management!
Bitching=reflection without looking to future!
Should be a process of turning history into learning. Purpose is to reflect on practice, with a view to fostering habit of reflecting IN practice.
Start is traditionally with Actual Practice. VBRP starts with Motivations (Soul and role, vision and values. Why bother!?). Sorting that out tends to deal with problem of quality control! From Actual practice, then to Potential practice.
Needs conducive environment cf patronising, judging, analysing. Else survival but not learning.
2 tools available – 3 levels of seeing, and NAVVY.
• Observe without interpreting (don’t hold back!)
• Questioning/curiosity (I wonder… Do you ever…)
• What do you think now? (Penny drops – perception, realization)
Offensively simple, but hard to do without diving in.
• Needs – whose needs were met? Not met?
• Abilities – what does situation tell us about abilities/capabilities?
• Voice and power – Who was heard? Not heard?
• Values – what was undervalued? Overvalued?
• You – what does situation say about you/me/us?
What’s the matter with you? cf What matters to you?
“Nothing about me, without me” (mental health)
Can be applied to ward rounds, MDT, training/education, service delivery etc etc
Research has shown increased motivation, satisfaction, confidence and reduced stress. Even better team communication (shared values?).
The DNR question makes parents feel that their child’s right to life, and quality of life are being questioned. Do it once, then leave it alone. Parents can agree in what circumstances it should be asked again.
Beware self fulfilling prophecies – if you are pessimistic, you may limit what they may achieve in future.
There is no such thing as false hope. Hope is today’s dream for tomorrow, it helps you keep going, putting one foot in front of the other.
Parents have needs too. Helps when professionals presume things will get better, when they acknowledge patient is beautiful, happy, loved; when they are pleased with progress, when they share good news as well as bad.
Careful with words in front of parents and siblings eg end of life pathway, dysmorphic, lethal condition.
The discipline of medicine concerns the manipulation of knowledge under uncertainty (Siddharta Mukherjee).
“When you consider that CPR would be futile for a patient dying from a terminal illness in hospital, there is no need to distress the patient with a discussion about CPR before completing the DNACPR form.”
This was considered appropriate advice until June 2014. Patients cannot demand futile treatment and so, if the decision has been made not to resuscitate, asking the patient’s views could lead to difficulties if he/she wanted cardiopulmonary resuscitation. In addition, if handled badly, the patient may be left with the misunderstanding that a life-prolonging treatment was being withheld.
In landmark judgement re: Janet Tracey, who had terminal lung cancer, Lord Dyson said the hospital trust violated Mrs Tracey’s right to respect for her private life under Article 8 of the European Convention of Human Rights when they placed a DNR order in her notes without informing her.
“Doctors have a legal duty to consult with and inform patients if they want to place a Do Not Resuscitate (DNR) order on medical notes. A DNR decision is one which will potentially deprive the patient of life-saving treatment, so there should be a presumption in favour of patient involvement. There need to be convincing reasons not to involve the patient. Doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them”. June 2014
Relatives of patients should never be asked to make decisions about resuscitation status, but it is good practice to take the opportunity to inform them if a patient is known to be dying. Relatives cannot make treatment decisions unless they have legal powers to do so. Even then, they cannot demand treatment that is considered futile by medical staff. However, if a DNACPR order is written, it may offer an opportunity to inform them (and the patient if appropriate) that the patient is expected to die soon and that active care may continue but will stop short of CPR.
Carl Winspear case 2011 – High court held DNACPR wrote at 3am without consulting family was breach of human rights. Phone call would have been “practicable” albeit inconvenient. The defence that it was a clinical decision declared a “misunderstanding as to the purpose of the consultation… Input into decision making process… Dignity… Family can take on board and respond to news”
When a patient is being discharged home to die, patient and carers should be informed and in agreement with a DNACPR order as the paperwork will be kept in the house and could be discarded if not understood or wanted by the family. If at all possible, a DNACPR order should follow the patient home when death is expected. The existence and benefits of the order should be explained to the patient (if lucid and mobile) and carers, as it will most likely be seen by them and could cause distress if not known about in advance. It will only be effective if accepted by those caring for the patient, as they would be responsible for calling for emergency assistance or not in the event of death.
It should be remembered that the decision not to resuscitate is one for the medical team or the patient, but not the relatives. However, asking for a patient’s agreement with a DNACPR decision already made may cause unnecessary distress. Good, sensitive communication about end-of-life issues is important and may be prompted by a DNACPR order. The issue of time and skills needed to do this is acknowledged and the need for further clarity and discussion is apparent.
Allow Natural Death – preferable terminology?
See also Expert patients. E-patients – (Wikipedia) use internet on behalf of themselves or others to get information about medical conditions. Tom Ferguson white paper.
In the outside world, a diagnosis (esp a rare one) can seem like a world upturning misfortune that sets you apart. Online, it is a badge of honour that connects everyone together.
Angela Coulter – paternalism in health care – clinicians underestimate how intimidating the clinical encounter is, patients fear offending their clinician if they assert themselves or offer an agenda. Clinicians are often unaware of the constraints that prevent patients asking questions in clinic. Clinicians often believe patients need to be protected from the truth eg uncertainties, bad news. Patients can often be left feeling inept, diminishing their sense of control. Paternalistic clinicians often seen as unsympathetic or arrogant, refusing to accept ideas or suggestions.
Try:
Patient feedback – can sometimes lead to poor morale – positives need to be celebrated. Confidentiality must be assured for feedback to be meaningful.
Difficult to determine the psychosocial harms and benefits of testing in childhood. A systematic review (Genetics in Medicine, 2015, doi:10.1038/gim.2015.181) found that serious adverse psychological outcomes were uncommon, and most studies reported no significant increase in mean anxiety, depression, and distress scores. However, some children experienced intrafamilial distress, discrimination, and guilt/regret. Some children were more concerned about their own health or their family members’ health. It wasn’t very easy to anticipate adverse impact.
Objections-
On the other hand, it has been argued that parents have the right to make decisions on behalf of their children because they have primary responsibility for their child and they know their child best.
Similarly, not testing may mean that the child loses the opportunity to grow up with and adapt to genetic knowledge during his/her formative years. Plus, parental anxiety, difficulty of living with uncertainty.
The authors of the systematic review highlighted the lack of data regarding genetic testing for conditions that may not be treatable/modifiable, and the dearth of longitudinal studies. So they conclude that caution remains essential for the ethical integration of genetic testing in children.
British society for human genetics, 2013 report into testing children. http://www.ethox.org.uk/Documents%20and%20images/GTOC_2010_BSHG.pdf
Data Protection Principles:
Data protection act 1998 governs access to medical records. Other acts address rights to data not relating to individuals (Freedom of information 2000), or access to records for deceased individuals or for insurance or employment reasons. It is the duty of the Data Controller (ie whoever decides how data is used) to recognize that a request in written form (incl an email) is a valid request ie no specific form required, data protection act does not need to be cited.
Doctors are still permitted to informally allow access to notes eg for purposes of confirming list of medication.
Applies only to living individuals and excludes anonymized data.
Patients have right to know whether data about them is held, but no need for them to be informed each time it is used. If factual content is disputed, patient has right to have details amended but should be done so that it is clear change has been made in light of new information. If doctor believes existing record is accurate statement of clinical opinion, they may offer patient opportunity to add statement of their own opinion.
If record requested, must be supplied in a permanent format unless disproportionate effort involved, and in a format acceptable to the patient.
Under statutory instrument 2000 no 413 (Disclosure if information that may harm somenone’s health) data controller can restrict access to record but otherwise there is no restriction on the type or age of record (eg electronic or paper). GMC advises that potentially causing upset is not sufficient grounds to withhold access.
Access must be given within 40 days of request and any applicable fee.
Use of records must be according to the principles of processing fairly and lawfully, obtaining only for specific purposes, adequate, relevant and not excessive; and held only for as long as necessary. Where use of records is being considered for more indirect purposes, eg audit, then must be done carefully, by named data controller.
Reasonable steps should be taken to ensure that “subject access requests” are genuine and to verify identities, particulary if request seems unusual,or disproportionate (eg whole of case record rather than just certain dates). Eg Solicitor letters, is signed mandate included and recent?
Not appropriate to hand over notes and let someone else do the sifting – data controller must take appropriate measures to prevent unauthorised or unlawful processing (eg alterations) or accidental loss.
Patient has right to have data explained to them in understandable terms eg jargon, undecipherable text. If unable to contact the original author, data controller must make an effort to provide explanation, which is no different from what they would do in their own day to day work.
You can ask why data is being requested, eg as part of verification of whether an agent is acting within the scope of their authority, but no legal duty for this info to be provided.
See also Confidentiality
Dame Fiona Caldicott’s review of original 1997
information governance recommendations – response to perceived
reluctance to share info appropriately.
Appropriate sharing should be the rule, not the exception. Given need for informed consent, concludes that patients should be better informed as to how their
information is used. Needs system for recording consent applicable
across all NHS and care systems. Sharing info with a private
organisation or local authority should be equally straightforward, if
data protection principles are applied.
For information to be confidential in law it must:
Explicit consent is not required for the following purposes:
Most patients understand that their information must be shared within
the healthcare team. However, patients do not expect this to be shared
with others who will not be involved in their care.
Aggregated and management information is used to plan and monitor
progress of the organisation in its delivery of services. This is
generally outside the scope of the Data Protection Act 1998 on the
basis that a living individual could not be identified from such data.
Anonymized/coded information would normally fall outside the scope of
the Data Protection Act 1998, but care must be taken with all coded
and anonymised information as it may still be possible to identify
individuals, e.g. with rare diseases, drug treatments or statistical
analyses within a small population.
For other uses, it is your responsibility to make sure that patients
are aware of the wider uses of their information and to get their
permission. It is your responsibility to make sure that you provide
versions in any community languages or meet other accessibility
requirements.
You should:
* make clear to patients when information is or may be disclosed
(shared) to others involved in their health care;
* make sure that patients are aware of the choices that are available
to them on how their information may be disclosed and used;
* check with patients to make sure that they have no concerns or
questions about how their information will be disclosed and may be
used;
* answer any questions personally or direct patients to others who can
answer their questions; and
* respect the rights of patients and help them to access their health
records if they have asked to do this.
3rd party info eg family history or info coming from an identifiable
family member – may itself be confidential, even if in patient’s
record, so 3rd parties should be told if their identity might be
revealed, and given opportunity to decline.
Beware use of automated reports for insurance etc, where only minimum
necessary info is appropriate, and would be wrong to disclose more
than that.
Option to opt out of data analysis emphasized – not clear how this
would be done.
Training seen as tick box rather than education.
£100 000 fine for Aberdeen city council for a home worker accidentally uploading files regarding vulnerable children to an online file store. A fine has never been issued for formal sharing of information. “Blagging” is also an issue, where a 3rd party obtains information by ostensibly acting as a healthcare professional or family member.
Guidance from 2003 still applies – obtain confirmation of identity (or
phone number etc) from second source. If breach occurs, individual
should be informed.
See also Data Protection for Caldicott principles etc.
Scottish Government’s Sharing Information about Children at Risk: A Guide to Good Practice (2003) states:-
“If there is reasonable concern that a child may be at risk of harm this will always override a professional or agency requirement to keep information confidential. All professionals and service providers have a responsibility to act to make sure that a child whose safety or welfare may be at risk is protected from harm.”
The National Guidance for Child Protection in Scotland (2014) states:
‟Harm‟ means the ill treatment or the impairment of the health or development of the child, including, for example, impairment suffered as a result of seeing or hearing the ill treatment of another. In this context, ‟development‟ can mean physical, intellectual, emotional, social or behavioural development and ‟health‟ can mean physical or mental health.”
Recent advice has also been received from the Scottish Government, having consulted with the Information Commissioner’s Office, regarding the impact of GDPR and the Data Protection Act 2018 in this area. The Information Commissioner’s Officer has confirmed:
“It is important that those whose work brings them into contact with children and young people continue to share child protection concerns in the same way as they did previously. Child protection matters at the significant harm level equate to sharing/processing being necessary to protect the vital interests of the child where reliance on consent may be prejudicial to that purpose. The same lawful purposes are provided for in Articles 6:1(b) and 9:2(c) of the GDPR for personal and special category data so nothing has changed at that level”.
It is important to be open and transparent and make people aware that we will share information when we suspect a child or young person is at risk of harm. It is also important to record any decision to share or not to share information and reasons for doing so.
* Human Rights Act 1998
* Freedom of Information (Scotland) Act 2002
* NHSS Code of Practice on Protecting Patient Confidentiality.
* NHSS Information Governance standards 2005
Note that Scotland leads patient data protection with Fairwarning software.