Why patients may need help in deciding
There are numerous reasons why a patient may want, or require, a practitioner's help in making a decision while receiving treatment and care at home. The most obvious need is for information and support in deciding whether or not to accept something proposed by their nurse; and, if there is a choice between alternatives, which one to choose and why. Every decision bears on the patient' s future in the shorter or longer term and one of the most vital decisions is whether all the patient's surrounding circumstances indicate that care and treatment in their home can sensibly continue or whether it would be better pursued in a care home, in hospital or in a hospice. Such a decision places a particular burden on the treating nurse because their training and experience may well favour the maintenance of domiciliary care.
Autonomy the guiding principle
The fundamental principle guiding a patient's decision in their home is autonomy. Autonomy means that patients either decide on a course of action for themselves or at least feel free to decide which proposal or alternative from their nurse to adopt. Autonomy underpins the element which is always of the essence of treatment, namely consent.
The author has said elsewhere (Finch, 2020) that the expression ‘informed consent’ which tends to roll off the tongue of every practitioner is best avoided; not because it is misleading but because the addition of the adjective ‘informed’ does not actually add anything. Either someone consents to something or they don't. This is not to say that information about proposals or alternative suggestions is irrelevant, for the opposite is the case.
Where care and treatment continue to be given in the patient's home, it is not just the treatment administered by the nurse which should be considered, but also upkeep of the treatment which may be given by family members, relatives, friends or domestic assistants. It is the legal responsibility of the community nurse in overall charge of the patient's treatment that each and every one of these other people should understand at least the rudiments of what they are supposed to be doing, the reasons for it and, in many cases, the importance of its timely administration. Charts and timetables can be invaluable to these other people in the domiciliary setting to give them confidence in the part they are playing as well as to ensure the patient's wellbeing and safety.
These auxiliary carers should always have the trust and confidence of the patient. However, while that is to state the obvious, problems may arise where, for instance, the patient is affected by a degenerative mental condition or other mental disorder which makes them less able to understand what is being done to them than would be the case with someone not so affected. The same is true of a patient with learning difficulties of even one who simply has a poor memory. In these cases, family members or other auxiliary helpers may play a vital role in facilitating patient understanding so as to get as near as possible to genuine consent.
Why the law requires consent
There is a simple reason why the law requires the consent of a patient to proposed treatment. Any physical contact with another person requires their consent for it to be lawful.
Any physical contact with a patient should be something which they expect or accept as part of their care. In an ideal world, the nurse should always give a prior explanation of what physical contact is to follow, though the law does not require such explanation to go to absurd degrees and physical contact between treater and treated is on the same legal footing as going out in the street. Care should, however, be taken with patients affected by mental conditions and with those prone to phobias and anxieties. Nurses should be aware of any such obstacles to lawful contact as part of their initial assessment of the case.
Home care during the COVID-19 pandemic
Ominous threats emerged from somewhere in Government during the early stages of the pandemic that patients affected by COVID-19 could be compulsorily removed from their homes. The threats did not state who would do it, nor where they would be taken nor what would be done when they got there. This was part of the machismo of Boris Johnson's swashbuckling and unpredictable way of addressing the pandemic and, as with so many other actions taken by his Government, had no legal foundation. The worry caused to sufferers receiving care and treatment at home, many of whom were already very vulnerable, was unforgivable. When the threats of forcible removal suddenly stopped, no explanation was given as to why they had stopped.
The threat was not so much withdrawn as disappeared. This came as no surprise, given that hospitals were already overstretched and care homes were widely unprepared for the emergency despite their best efforts. In the early days of the pandemic, the Government ‘prioritised’ PPE (personal protective equipment) in favour of hospitals. They did this by making sure that care homes didn't get it. When that scandal was exposed, the Government did an about-turn and announced that the care home sector would be ‘ring-fenced’, whatever that was supposed to mean. The ‘policy’ of forcible removal of patients from hospital, many of them untested for the virus, to care homes was later declared by a Court to have been unlawful (Finch, 2022).
The same ruling would undoubtedly have been made had any attempt been made to drag people from their homes by police or social workers. While there are certain instances in which police powers may lawfully be used during a public health emergency, these powers are strictly circumscribed and require specific diseases to be precisely defined if public health officials are to act lawfully. A Regulation made pursuant to the Public Health Act 1936 (UK Government, 1936) (as amended), is required. Police may indeed be involved, but their powers are not arrest powers as such, but are exercised as an adjunct to the lawful jurisdiction of public health agencies.
This contrasts starkly with an infamous example of police abuse of power in the case of a woman (who happened to be a doctor and was well-qualified to know what she was doing) who decided to remove her ailing father from a care home because she feared, in those early days of the pandemic and Government incompetence, that her father would be safer in his own home. Someone at the care home called the police and she was prevented from extracting her father and arrested. The hue and cry which ensued led a senior officer of the relevant police force to announce to the press that the woman had been “de-arrested’.
Interference by social workers
Another cautionary tale comes from the author's own recollections of his neighbours; living in an apartment block in a leafy suburb in the East of England, was a man, his wife and their adult son. They lived a happy and untroubled family life until the old gentleman began to show signs of Alzheimer's disease. Used as they were to coping with things as a nuclear family, they considered what outside help they might need to deal with their new difficulty, for the disease was developing rapidly. They contacted the local social services department. However, far from offering supportive advice on how they could keep their family together under the same roof, albeit in difficult conditions, the social worker who visited them was adamant that the old gentleman should not live them anymore. The social worker proposed, and even insisted, that he should be sent to live in a care home situated about 150 miles away. The ‘advice’ was based on a single visit to the family and on the snapshot upon which many social workers found their misguided views.
The adult son had a chronic, though not severe psychosomatic condition, which caused him to rely on public transport so as to avoid driving a car. The care home was too far a journey for visits and it would have been difficult, if not impracticable, for the ageing mother. Despite the insistence of the social worker to the point of verbal aggression, even going so far as to accuse them of neglecting the ailing father's welfare, they nevertheless managed to get some welcome and much-needed support for the old gentleman at home. Needless to say the support came from community nursing and not from social services.
A couple of weeks into the excellent care delivered by community nursing services, the same social worker telephoned the son and continued to accuse him and his mother of having made the wrong choice for the father. He was once again verbally aggressive.
The rapidity of the progression of the old man's disease ultimately led to his demise at home, some four months later, surrounded by his wife and son who loved him and whom he loved dearly.
It was fortunate that the social worker managed to contain his pique and did not follow it up with another accusing call. Had he done so, he would have been open to a charge of harassment under Section 2 of the Prevention of Harassment Act 1997 (UK Government, 1997) which is punishable by a fine or imprisonment. Section 3 of the Act gives the Court power to award monetary compensation for anxiety caused by the harassment as well as for any costs incurred as a result of it. Social workers do law for a few hours on a Wednesday afternoon during their training when the other children are playing football. A little further attention should be paid to the standards by which social services departments are officially judged.
How social services are graded
Shifting the focus from age to youth, social service departments tend to regard situations involving children as their own private fiefdom and charge in without regard to the many and varied differences which such a case may present. Their acquaintance with the family may be much less than that of a community nurse who has been visiting them for any particular reason.
For some unfathomable reason, the responsibility for inspecting child safeguarding services run by social services departments falls within the jurisdiction of the Office for Standards in Education, Children's Services and Skills (Ofsted), a body normally associated with schools and designed for that specific purpose. The gradings awarded by Ofsted following inspection of both these services merit examination. They are: Outstanding; Good; Requires Improvement; Inadequate.
Any given social services department may well boast a mixture of more than one of these ‘categories’ and some may demonstrate aspects of all four depending on which particular activity is being assessed. Such a categorisation follows the modern tendency to stick labels on things and then purport to derive conclusions from the labels, rather than to form a rational judgement and then give it a label for all that the label is worth. Only the most cursory examination of these labels reveals them to be meaningless and possibly misleading.
For one thing, a social services department which is ‘Good’ at everything except one is by nature ‘Outstanding’ for the simple reason that so few of them are. For another, such a department by definition requires improvement. No responsible Director would rest happy with a department whose activities was subpar. As for ‘Requires Improvement’, so do many things in this mortal coil. The trick is knowing what to improve, and how.
As for ‘Inadequate’, a whole volume could be written, for it covers a multitude of sins ranging from downright incompetence to the commission of criminal offences by social workers (as well, in cases of a joint operation, by the police). Inadequacy sometimes shows up when another agency is chosen to be involved. The usual police response when they have made a mess of things is that ‘lessons have been learned’ and that practices have changed. Social services maintain a deafening silence and disappear from view.
An aside: The social services department which attempted unsuccessfully to wreck the life of the family described earlier was subsequently inspected by Ofsted and found to be Inadequate. Huge sums of consultants' fees were expended in consequence but to no avail. The inspection after that, 2 years later, gave them another Inadequate. The Director eventually resigned.
When a family is under great stress with regard to the care of a vulnerable member, it can be tempting to think that social services could help. The best advice is to call in community nursing services and get their advice. Community nurses could take a few moments to look up the latest Ofsted report on social services in their area to see whether they might have anything to offer. These reports are publicly available on the internet.
It should not be without the greatest care that a social worker be allowed to have anything to do with a decision-making team in which the community nurse is the prime mover. Were such to be allowed, unwittingly, by a well-intentioned community nurse, the nurse could find themselves saddled with the blame for an adverse consequence which is in reality, the social worker's fault.