Resisting Care: An unsuccessful s.21A challenge from a ‘feisty’ 94-year-old

Queen Elizabeth II in turquoise jacket and hat, with a bouquet of flowers.

By Celia Kitzinger, 19 June 2022

It was a week after the Queen’s Platinum Jubilee celebrations (this becomes relevant later!) and District Judge Searl was making a decision about a 94-year-old woman (“Hattie”) who lives in a care home but wants to return to her own home.  

The law

It was a challenge under s.21A of the Mental Capacity Act [MCA] 2005.  These challenges take place when there’s a standard authorisation restricting a person’s liberty under the Deprivation of Liberty Safeguards, and the person is objecting to their placement.  When this happens, there’s a positive obligation on local authorities to assist the person to challenge their deprivation of liberty (Re AJ [2015] EWCOP 5)

The starting point is Article 5 of the European Convention on Human Rights (incorporated into domestic law by the Human Rights Act 1998, s. 6 (1)) which says that everyone has the right to liberty and security of person and that no one shall be deprived of their liberty save in specific cases (which includes cases involving persons of unsound mind) and in accordance with a procedure prescribed by law. Article 5(4) provides:

“Everyone who is deprived of his liberty by arrest or detention shall be entitled to take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if his detention is not lawful.”

Article 5(4) European Convention on Human Rights

The court has jurisdiction to make a decision about where Hattie lives because it has already been determined, in an earlier hearing, that she lacks capacity to make that decision for herself (s.3 MCA 2005).  So, the judge must make a decision on her behalf, in her “best interests” (s.4 MCA 2005).  

In arriving at a decision, the judge must consider Hattie’s “past and present wishes and feelings” (s.4(6(a) MCA 2005) and the “beliefs and values that would be likely to influence [her] decision if [she] had capacity” (s.4(6)(b) MCA 2005).  

The judge must also take into account the views of “anyone engaged in caring for the person or interested in his welfare” (s.4(7)(b) MCA 2005).  At this hearing, a key person was Hattie’s niece, Mrs Jones (all names are pseudonyms), who was also her Litigation Friend and had instructed a barrister to represent Hattie and to bring the s.21A challenge.

The outcome

At this hearing (COP 13719647) before District Judge Searl sitting at Newcastle Civil and Family Court, the judge ultimately decided, after hearing all the evidence, that although Hattie has “a firm, consistent and strongly maintained view that she wishes to return home”, it is not in her best interests to do so.  

The context (elaborated below) is that previous trials of living at home had failed,  the local authority did not support a move home, and the Litigation Friend (Hattie’s niece) was ambivalent.  

The main obstacle to Hattie moving back home as she wishes is that she’s unwilling to accept care. In her view, she doesn’t need it.  She can manage on her own.  She doesn’t want people intruding into her private space to provide care.  

This will resonate for many of us. A desire for independence is often a core value that leads older people (both with and without capacity) to refuse home care, much to the frustration and dismay of their adult children.  

And it often backfires: it seems quite likely that if only Hattie were willing to accept the care being offered, she would be supported to return home and would not remain deprived of her liberty, against her will, in the care home.

This is a recurrent challenge, it seems, for professionals working in care of the elderly (including those presumed to have capacity to make their own decisions on the matter): “On the one hand is the denial of need so evident to us and service workers. On the other hand,  there is a deep concern … about remaining independent and staying out of nursing homes …  [which] could be solved or alleviated by existing services, the very services the elderly say they don’t need.” (The reluctance of the elderly to seek help)[1]

The hearing

The hearing opened with introductions of the people on the video-platform.

Acting for Hattie, who was the applicant (via her Litigation Friend, her niece) was Sophie Allan of Kings Chambers. The local authority was represented by Jade Furguson of Parklane Plowden.  Other people on the video-platform included Hattie’s niece, a social worker and an instructing solicitor. Hattie herself was not present.

District Judge Searl then greeted Hattie’s niece by name and said she recognised “how difficult the position is you find yourself in today” before asking her – rather anxiously, I thought – whether she had any concerns about my presence as an observer and explaining the transparency order. “That’s absolutely fine. No problem at all!”, said the niece.

The judge said she’d “not had the privilege of dealing with Hattie’s case prior to now”, and checked that “Hattie” (rather than “Harriet” or “Mrs Smith”) was an acceptable way to refer to the person at the centre of this case. (It was.)

She then summarised the issues before the court.

Hattie is 94 and lived in the same property all her adult life until December 2020 when she was admitted to hospital following a fall and reports of increased confusion, irregular sleep patterns and verbal and physical aggression (she has dementia).  She was then discharged to the care home in July 2020.

Since then, she’s twice been discharged home with a package of care, but was both times readmitted within a short period.  Problems have included Hattie declining care and refusing entry to care staff – in part, says her niece, due to shortcomings in the previous care agency.  But the root of the problem is that Hattie feels she doesn’t need assistance.  She’s also refused assistive technology because she doesn’t feel she needs it and it’s an invasion of her privacy.

This hearing is to determine whether Hattie should be supported to have (another) trial period of living at home to see if it can be made to work.

Counsel for Hattie

On behalf of Hattie, counsel took the position that the risks of a trial return home “must be balanced with Hattie’s very firm wish to live in her home of more than 70 years: in terms of wishes and feelings, she could not be clearer”.  

Despite being relatively “settled” at the placement, she’s clear and consistent that she wants to go home.  She told her legal representatives she is “dying to go home”.  She can be ‘triggered’ by other residents or staff members talking about home, becoming disturbed and distressed.  When Hattie’s niece and Litigation Friend, Mrs Jones,  visited Hattie last week, she found Hattie upset and insisting on going home; she had packed all her bags and clothes and had them stacked in her room.  She desperately wants to return to her house. 

Hattie has not been, historically, a sociable person: “she’s kept herself to herself; she’s not someone with a wide social circle, and she doesn’t benefit particularly from social activities and social contact in the placement in the same way that other people would do”.  

Moreover, “notwithstanding her age, she’s remarkably able and capable.  Her care needs are surprisingly minimal for someone of 94She’s independent in almost all tasks.”

The local authority’s concerns are “understandable and come from a place of wanting safety for Hattie, but the evidence suggests perhaps the local authority has adopted a risk-averse approach in considering what Hattie’s care needs actually are.  In their first witness statement in June last year, the assessment was for 24-hour care, which is simply not borne out on the evidence”.

Moreover, “there is a helpful OT [Occupational Therapy] assessment that very much supports Hattie’s fervent wish to go home.  OTs are often cautious about the safety of returns home, but this is a remarkably positive assessment”.  On a brief visit to the property, Hattie “was oriented to the rooms, to the property and to the tasks the OT described as familiar, including operating the gas fire and appliances, mobilising over steps and using the stair lift”. The OT recommends carers four times each day, a key safe and the connection of an emergency monitoring and response service.

The local authority social worker had raised three key concerns: risk of falls, Hattie’s failure to use assistive technology and whether she’ll accept care at home.

On falls: Hattie was assessed as at high risk of falls 9 years ago, but continued to live at home for 6 more years.  The OT has identified some loose carpeting in an upstairs room  –  a trip hazards that can be removed.

On assistive technology: She doesn’t feel she needs it, but the Litigation Friend believes that Hattie would accept this if it was explained to her that a return home was conditional upon its use. 

On care:  “We have to acknowledge she’s previously refused care. She declined entry to care staff during a previous trial at home.  She feels she doesn’t need assistance and does lack some insight in that regard.  But there’s no record of her not being compliant with care in the care home, so we think there’s a good chance she’ll be receptive to the limited amount of care she needs.”

Finally, “I won’t quote Mr Justice Munby” said Sophie Allan, “but we all know what he said“.  (He said: “What good is it making someone safer if it merely makes them miserable?” Local Authority X v MM & Anor (No. 1) (2007)).

Counsel for the local authority

The key concern for the local authority was that Hattie is “resistant to care”.  

To the extent that Hattie accepts care at the care home, this is a consequence of careful management by the care home.  

Everyone says she’s a fiercely independent lady. She maintains the view she’s able to manage everything independently. She’s resistant to carers coming into her private room at the care home – so if we’re looking at a trial at home and carers coming into her private house, it is likely that she’s going to be resistant.  Care records do show she’s become less resistant to care over the last few months and that may be because she’s becoming more settled there.  She’s been there more than a year now, and built up a rapport with some carers, and they know not to come into her private room.  But at her home there’s no communal area – it’s all her private home.”

Counsel described how, when Hattie refuses care, the carers leave and return a little later to try again, but “the disengagement and return technique wouldn’t be possible with scheduled visits at home”.  

When Hattie doesn’t get on with a particular carer, the care home swaps to a different carer for a few days, but the agency providing care at home doesn’t have that flexibility.

The OT report prior to the last return home was “very similar to the report in the present case” and it broke down because Hattie wasn’t engaging with carers – which turned out to mean that she wasn’t letting them into her home, sometimes – as her niece explained – because agency staff were not turning up at the allotted times, and she was “really upset and didn’t know who was knocking at the door”.

Since assessment by OT, Hattie’s mobility has declined but she tries to walk without her walking stick, which increases the risk of falls.  

Also, it’s likely she’d unplug the assistive technology.

The local authority added that there is also evidence of further decline in her dementia – and a problem with the previous return home was that Hattie had been visiting her neighbours and complaining they’d been waking her up husband (who died many years ago). 

It would be “a very serious and distressing situation” if there were another breakdown in care at home, and it would take a long time to “settle” her back in the care home in the way she’s currently settled.  
Hattie has repeated on many occasions she wants to return home and the local authority isn’t trying to downplay that, but at the moment she is settled and enjoys her current environment. She takes part in communal activities and has built a rapport with some staff. The local authority view is that a trial at home would not be in Hattie’s best interests.”

Hattie’s niece (and Litigation Friend) – Mrs Jones

Counsel for Hattie (instructed by her niece, Mrs Jones) said several times that “in terms of best interests this is difficult case”.  She said “the Litigation Friend acknowledges that and feels it very keenly”.  She accepted that the local authority has “reservations” about Hattie returning to live at home and said that “Mrs Jones has reservations herself”.    

I thought Sophie Allan did a nice job of presenting, on the one hand, the best possible case for Hattie to return home (thereby representing her client’s wishes and feelings) while also acknowledging the reservations and ambivalence of Hattie’s niece, who was instructing her in Hattie’s best interests.  

Mrs Jones feels acutely torn. She wants to facilitate Hattie’s wishes and thinks there’s a reasonable chance that it could be successful. She’s effusive when describing Hattie’s independence throughout her life. But she’s cautious at the same time. She feels reassured that Hattie is safe and warm and provided the regular meals at the moment, and watched over, and she bears that in mind, which is why she’s inviting the court to make the decision today.  Mrs Jones is not coming down strongly on one side or the other, but on Hattie’s behalf, she’s very clear about what Hattie wants.”

In the Position Statement, Sophie Allan adds that Mrs Jones feels that it would be “a betrayal” of her aunt to “write her off” or “dump” her in a placement that she does not want. 

There was an additional complication, which must have been anxiety-provoking for Mrs Jones.  This application had been made more than a year ago and Mrs Jones’ circumstances had changed. Whereas before she would have been able to visit Hattie very frequently (for example, to ensure the carers gained admittance), now her work commitments had increased and she was no longer able to do so.  She was still hopeful that she could “drop in” on Mondays to Wednesdays each week, but no more.

The local authority was concerned that this “lack of oversight” from Mrs Jones would increase the risk to Hattie, but Sophie Allan pointed out that “this was never a case where family said they’d provide specific care”.   

The judge was also careful to point out that although the informal support arrangements were no longer as extensive as earlier in the proceedings, “that is a fact of life and the care package was never predicated on more than informal support”.  The court was concerned (it seemed to me) to avoid any implication that the niece’s changed circumstances had any bearing on the outcome, which was sensitive to the burden of guilt that informal carers can feel in situations like this.

When offered the opportunity to address the court, Mrs Jones thanked everyone for their “professionalism and care”.

Judgment

In her oral judgment, District Judge Searl reminded herself that “the Act requires we do not make a determination on the basis merely of a person’s age”, and that’s when she referred to the Jubilee celebrations and our “96-year-old monarch”. Just a week or so after the Platinum Jubilee, said the judge, we should be clear that “the age of a person is nothing to do with their capabilities“.

Mental Capacity Act 2005

The court has jurisdiction, said the judge, by virtue of the previous declarations that Hattie lacks capacity to make her own decisions about where she lives and the care she receives.

In making a best interests decision, the judge had to consider Hattie’s “wishes and feelings, values and beliefs and all other relevant factors”.  The judge said she had built up a picture of Hattie as “if I may use the term, ‘feisty’”: I’ll come back to that word “feisty” later.  She described Hattie as “a 94-year-old lady, loved and admired by many people”, “very house proud”, “remarkably independent and mobile” and as expressing “a consistent wish to live in her own home where she lived for 70 years”.

The judge described what had happened on the previous trials at home.  On one occasion Hattie was readmitted to the care home on an emergency basis having lost 2kg in weight over a three-week period at home because she was refusing food.  She’d also struck out at a (pregnant) care worker with a stick, and flooded her house due to turning off her washing machine mid-cycle.  She doesn’t accept her limitations and attempts to undertake tasks in the home that are beyond her physical abilities (e.g. changing the curtains).  She does not have insight into her difficulties and minimises the impact they have on carrying out activities of daily living and the risks associated with that.  

It was also likely, said the judge, that Hattie would refuse access to the carers.  She becomes “agitated” if they don’t arrive at her home at the specified time – and “in the circumstances in which she and we live, provision of care at set times cannot be guaranteed”. 

It’s also impossible to keep her safe because “she is rather charmingly of the generation and ilk that went around turning off electrical devices before she went to bed, so the assistive devices would be non-effective She also sees them as intrusive of her privacy and has a strongly held view that she does not need them”.

The judge accepted “without hesitation” the position of the Litigation Friend as being “torn” and said it was a “finely balanced” decision which she doesn’t “come to easily”.  On balance, though, weighing on the one hand Hattie’s strong with to return home (and her niece’s desire to support her in that wish) and, on the other hand, the risks of the care package breaking down “with significant detriment to Hattie”, the judge decided it was not in Hattie’s best interests to return home.

District Judge Searl ended by reassuring Mrs Jones that she (Mrs Jones) was not responsible for the decision:  “this is my decision not hers. In no way should she take any of the evidence I’ve heard today as meaning that her aunt is being ‘abandoned’ to the care home. It’s with regret that I do not find it in her best interests to give effect to her wishes”.  

Reflections

Many of us, watching this hearing, would resonate to the issues being addressed.  We may have elderly relatives who are declining care at home, or refusing to consider residential care, or asking to return home.  We may be thinking that this could be us in five, ten, twenty years.  

There’s an academic literature about managing older people’s resistance to care, some of which has found its way into blogs and online resources for the general public (e.g. Understanding your ageing parents: Why they refuse help;  How to deal with resistance when you’re caringRedirecting resistanceSix ways to help elderly loved ones overcome resistance to home care).  Many of the “tips and hints” about overcoming resistance to care appear on the web pages of businesses offering home care, supported living facilities, and residential care homes.  

A much-cited research article from the Journal of the American Geriatrics Society (Overcoming Reluctance to Accept Home-Based Support from an Older Adult Perspective) is based on focus-groups with 68 adults (average age about 74 years old). The authors found that reluctance to accept home-based support was associated with difficulty coming to terms with the fact that they couldn’t do things for themselves anymore; perceptions of being a burden; lack of trust in others to provide non-exploitative care; and lack of control.  Other articles locate the roots of resistance in: hostility towards being dependent on the state;  pride in fending for oneself; denial of need; fear of ageing; anxiety that relatives will visit less often if adequate professional care is in place; and diminishing cognitive capacity resulting in reduced coping strategies and rigid thinking.  Suggested strategies for overcoming resistance (or “non-acceptor syndrome”!) include tactful discussion of the notion of “interdependence”, focusing on what the person can still do for themselves and what positive contribution they can make to society, and encouraging shared decision-making. 

The problem of older adults refusing care is sufficiently endemic to have attracted professional training in negotiation and dispute resolution specifically in relation to older adults’ refusal of care (“Training Hospitalists in Negotiations to Address Conflicts with Older Adults around Their Social Needs”; “Negotiation Training for Case Managers to Improve Older Adult Acceptance of Services”).  

When older people refuse the care that everyone else can see that they need, and insist on their ability to look after themselves, thereby putting themselves at risk, those of us not (yet) in that situation can feel a complex mix of exasperation and admiration. Wanting the best for someone we love is fretted with guilt and frustration.

There was some (appropriate) hesitation from the judge in using the word “feisty” to describe Hattie.  But I could see what she meant.

Dictionary definitions of “feisty” offers synonyms like: fiery, spirited, active, bold, courageous, and determined (all of which seem to describe Hattie).  But “feisty” has also been criticised as a term “used to put women down”, an ostensible compliment predicated upon the assumption that women (and other powerless people) should behave submissively and be grateful for what they are given, rather than demanding something else. 

Feisty is typically used for people (or animals) believed to be small, weak and powerless but behaving as if their wishes mattered.  The Women’s Media Centre (citing examples of female politicians who’ve been branded “feisty”) quotes Michael Geis (The Language of Politics):  “one can call a Pekinese dog spunky or feisty, but one would not, I think, call a Great Dane spunky or feisty.”  According to the Guardian, “A woman is only identified as “feisty” because she isn’t behaving in the way all women are expected to”.  “Like Helen Mirran, I hate being called ‘feisty’ – can’t women stand their ground without being labelled?’ asks the Independent.  

In the context of this particular Court of Protection hearing, the word “feisty” embodies a recognition of Hattie’s relative powerlessness and the fact that she’s insisting on what she wants against the odds.

In using “feisty”, the judge expressed both affection and admiration for Hattie’s assertively stated determination to return home, even as she issued a judgment which frustrated that wish.

I have watched many protected parties in the Court of Protection trying to ensure that their wishes about where they live are respected: bargaining, pleading, begging, trying to prove themselves worthy and capable of a return home.  They do so from a position of relative powerlessness, in a context where they are deemed not able to make that decision, and the outcome lies in the hands of a judge.

Unlike the Queen, who despite her failing health, commands the wealth and power to live in her own home until the end of her life, Hattie does not.  

But even Queen Elizabeth II has been described as ‘feisty”!

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia


[1] It’s sometimes suggested that resistance to accepting help is a generational (rather than age-related) problem, but the article cited here is 40 years old and still (sadly) rings true today.

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