Category Archives: Generic

Parental Rights and Responsibilities (PRRs)

Ethics, Generic

For births registered in Scotland, a father acquires parental responsibility if he was married to the mother at the time of the child’s conception or
subsequently. An unmarried father will acquire parental responsibility if he is recorded on the child’s birth certificate and the child was born on or after 4 May 2006 (Scotland), December 2003 (England).

If not on the birth certificate, an unmarried father must obtain a court registered parental responsibility agreement or order.  Birth certificates can be updated with new information.

Parental responsibility is not lost automatically with divorce, loss of custody rights, or if a parent makes no financial contribution! Young people under the age of 16 who bear children still get rights, although usually additional support will be necessary.

Foster parents usually do not have parental responsibility – that remains with the local authority and the birth parents. The parental rights of a child born under a surrogacy arrangement remain with the surrogate until the new parents complete adoption procedures or else obtain a court order (under the HFE Act).

Parents are allowed to authorize 3rd parties eg child minders, Grandparents to take over particular responsibilities. In terms of the Childrens Act, what is reasonable to safeguard/promote the child’s welfare is permitted to such carers (in loco parentis). If however the parent is thought likely to
object to a treatment decision, only emergency actions are acceptable pending contact with the parents directly.  Competence of child themselves obviously relevant too.

Up to 6 people can have PRRs for the same child.  But becomes unmanageable!

Decisions regarding the following should involve consultation between all with PRRs:

  • schooling,
  • serious medical problems,
  • changing surname,
  • leaving country for more than 1 month
  • Etc (not exhaustive)

But PRRs are not a weapon for interfering with day to day life!  Gillick ruling made it clear that parental rights exist only for the benefit of the child! Less serious decisions may simply require other party to be informed.

Stepfathers are in a funny position.  Marrying the mother gives rights, but does not remove rights from biological father.  Not being married leaves only the option of adoption, or else applying for court order if later separation after being an important part of a child’s life.

Non-consensual adoption under close judicial scrutiny – the consent of the parent with capacity can only be dispensed with if “nothing else will do”, and not because providing requisite support is difficult.[https://ukhumanrightsblog.com/2013/10/01/when-adoption-without-consent-breaches-human-rights/]

Civil Partners – biological parents remain the legal parents.  Civil partnership confers equivalent step-parent status as married non-biological parent. Parental responsibility can therefore be obtained either by consent of biological parents, court order or adoption.

Residence Order confers PRRs too. Contact Order does not.

It should be noted that parents who do not have parental responsibility may also play an essential role in determining best interests and may have a right, under the Human Rights Act (rights, as individuals, to respect for private and family life – Article 8), to participate in treatment decisions  [BMA toolkit].

 

 

Health anxiety

General paediatrics, Medical, Patients, Psychology

DSM-5 has “illness anxiety disorder”, defined as preoccupation with the idea that you’re seriously ill, based on normal body sensations (such as a noisy stomach) or minor symptoms (such as a minor rash), to the degree that it gets in the way of normal life. Other features are persistence of such ideas over 6 months, finding little or no reassurance from negative test results or a doctor’s reassurance, repeatedly checking body, avoiding people, places or activities for fear of health risks.

In other words, hypochondriasis. Which gets its name from the idea that such feelings came from liver/spleen/gall bladder (“melancholy” – black bile).  William Cullen, in Edinburgh in the 1790s, appeared to take a particular interest in this.

For the sake of diagnosis, this disorder requires the absence of symptoms, which excludes the large group of people who have similar preoccupation and fears about non-specific or unexplained signs and symptoms.

Health anxiety is therefore a broader concept, and can include anyone who is more desperate for relief from worry, than for relief from actual symptoms.

Cyberchondria = combination of increased pathologisation of society, and ability to browse the internet.  Because provides the opportunity to find very serious, extremely unlikely explanation for problems.

Diagnosis of health anxiety is well accepted by patients if explained respectfully!

[BMJ 2016;353:i2250]

Uncertainty

Generic

“Medicine inhabits an inexact territory with terrifying hazards, and the best way to avoid them is to demand honesty from everyone.  The first truth that we must accept is that human beings are not perfect…  We must lose the fear that we’ll be blamed if [our patients] find fault” (Margaret Mccartney, BMJ)

The discipline of medicine concerns the manipulation of knowledge under uncertainty (Siddharta Mukherjee).

Leadership

Generic, Management

Leadership is not the same as management: yes, it’s about people and systems and getting things done.  But it’s more about inspiration, long term goal setting, encouraging people in their own journeys.

Can all be a bit alpha and masculine.  Yet lots of evidence that a compassionate style is more effective.  Study by Jonathan Haidt (New York University) shows that if employees are moved by the compassion or kindness of their leaders (a state he terms elevation), the more loyal they become to him or her, even if it isn’t directed at them personally.

We are especially sensitive to signs of trustworthiness in our leaders, and react strongly to “arsehole” behaviour.  

Not only does an angry response erode loyalty and trust, it also inhibits creativity by jacking up stress levels. Positions of power tend to lower our natural inclination for empathy, so it is particularly important as a leader to be self aware, and actively practice seeing situations form their employee’s perspective.

Key challenges – junior doctor training, MCNs, HEAT targets, centralization vs local demand.  Opportunities: improvement, efficiency.

Circle of influence (Steven Covey) – small subset of circle of concerns.  Note potential for stress and disillusionment in face of concerns, at time of need for motivation and creativity!  Always potential for extending circle of influence…

SWOT analysis: strengths, weaknesses, opportunities, threats.  Build on strengths, mitigates weaknesses, capitalize on opportunities, tackle threats head on.

To maintain trust and confidence – stay in touch, know your people.  Have a common platform rather than being seen as separate.

  • Direction and purpose – conflicts?  Wrong activities?
  • Align systems/processes – bureaucracy?  Slow processes? Going through the motions?
  • Know the people – do they say what you want to hear rather than being honest?
  • Release potential – and frees up your own time!
  • Influence and communicate – perception does not always equal reality

Transactional vs transformational styles:

  • Problem solving                   Coaching
  • Power based authority                        Influencing but no authority
  • Conservative                           Creative
  • Lack of growth                       Woolly
  • Work harder as philosophy     Change for change’s sake
  • Vulnerability to change
  • Thorough
  • Safe

Vision – relevant, strategically worthwhile over years, concordant – should stretch capabilities and self-image

Determines Mission: standards and values

Then in turn Goals (organisational), Strategies, Action plans

Having the broader goals and strategies helps services align, and allows stepwise change within a comfort zone rather than radical revolution with panic

SMART Plus objective – specific, measurable etc Plus clarification about why it’s important, acknowledgement and recognition.

Barriers should be flagged up as next steps – need to keep a “wildly important goal” (WIG) on the agenda of each meeting to maintain perspective.

Individual responsibility for health

Ethics, Generic, Patients

Deciding how to distribute health care costs may include looking backwards at what behaviours have contributed to a condition (eg tattoo removal may not be publicly funded, but removal of a disfiguring skin lesion where suffering is equivalent is), or may look forward to how behaviour might affect the effectiveness of a treatment (eg liver transplant with continued alcohol excess).  Sometimes looking forward and looking backwards have the same outcome, but not necessarily.

There are a number of arguments against these attitudes:

  • Humanitarian – a patient’s suffering should be addressed, regardless of the circumstances
  • Libertarian – denying treatment is likely to lead to even worse consequences, with eventual loss of political and civic participation (which is a societal good, as per JS Mill)
  • Fairness – although certain behaviour may increase the risk of a negative health outcome, other factors also play a role which are outside individual control, and rarely straightforward to establish causality.
  • Practical – if a doctor makes decisions based on behaviour, it encourages intrusiveness on their part, and defensiveness on the patient’s part, both impact on doctor-patient relationship
  • Moralistic – who decides which behaviours are acceptable and which not? Rarely non-judgmental

The liberal egalitarian response is to hold individuals responsible for their choice, but not for the consequences of their choice.  The egalitarian view is that everyone should have equal opportunities, regardles of their natural or social advantages/disadvantages at birth.  Of course, it can often be debated whether “choice” is ever truly distinct and independent of circumstance!  The liberal view is that there should be no formal or informal barriers (although not necessarily compensation for the disadvantaged).

So it would be appropriate to tax smokers an amount related to the increased health costs of smoking.  It would not be fair to tax some smokers more than others, even if the costs of their treatment might be more – it is the choice that matters.  This avoids all the objections above, apart from the moralistic one: but at least decisions on lifestyle taxes are made democratically, not by health care providers.

Does not solve the problem of whether behaviours can truly be considered a choice, when they are often predictable based on socio-economic factors.  Plus, not all types of behaviour can be taxed – physical inactivity?  Poor health care seeking behaviour?  Unsafe sex?

Cappelen and Norheim, J Med Ethics 2005;31:476–480. doi: 10.1136/jme.2004.010421

Significant Event Analysis

Clinical governance, Generic, Patients

Traditional M&M (mortality and morbidity) meetings – Many errors are not reviewed, and the key protagonists often not present when a case is being discussed; fail to engage affected families. This lack of transparency in the context of the Francis report is at odds with our duty of candour to patients when things go wrong.

Much energy is spent in the NHS concluding whether errors, adverse incidents and deaths are ‘avoidable’ or ‘preventable’.

‘Avoidability’ is an arbitrary conclusion – what matters, surely, is the care that the child received. Professional analysis of the care given reassures parents that their child’s life is of primary importance, and may provide some comfort that their experience will benefit other children.

Root cause analysis (RCA) tracks the origins of an adverse event back to find causes – too simplistic?

cf ‘Safety-II’ approach – focuses on understanding how things usually go right, and only then exploring why things occasionally go wrong.  Rare serious events, although easy to identify, often have complex aetiology, and factors may be difficult to modify. In contrast, “normal” behaviour may be easier to understand and to influence.

Parents’ own questions should inform professional discussion.  Analysis should go beyond identifying what the child died from, to considering why a child died of that condition, in that place,  at that time.

“The investigation of medical error, adverse events and child mortality each requires a distinct approach that revolves around a continuous cycle of reporting, professional scrutiny and follow-through of SMART actions. These processes should separately feed into a properly formatted clinical governance meeting, the purpose of which is to provide assurance to hospital boards and other regulatory bodies that there exists coordinated oversight of risk management, clinical effectiveness, audit and patient experience.”

[James Fraser, Bristol – Arch Dis Child doi:10.1136/archdischild-2015-309536 ]

Overdiagnosis

Generic, Health Literacy, Patients

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.

Mediation

Generic

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:

  • inequity/fairness
  • annoyance
  • hurt (esp respect, valued)
  • disagreements (even though healthy!)
  • competition

Good attention – focus, openness, impartiality, caring, withholding judgment.

Stages – before meeting face to face.

  1. Tell story, compare before and after, what changed?  But acknowledge qualities in others (start to shift thinking!).  Define issues.
  2. What could a future look like?
  3. How do we get there?  What is most important to you?  What could you live with?  Honesty essential!

Then write introductory statement before sitting down face to face.

(Andrew Graham, Diane Swanson)

Values based reflective practice

Generic

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.

3 levels of seeing

•    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.

NAVVY

•    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?).

Do not resuscitate

Ethics, Generic

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?