Hard choices, little thanks

July 13, 2006 in Adults

A 95-year-old woman in failing health lives in squalor by choice with her family, who obstruct attempts to assess her needs. Kristina Powney tells Graham Hopkins how she went about the task of persuading her to go to a nursing home

The names of the service user and family members have been changed

Case notes
Practitioner: Kristina Powney, practitioner manager.
Field: Disabilities and older people.
Location: London.
Client: Ellen Ferguson, 95, is very frail and immobile. She lives with her daughter, Beatrice, 65, son-in-law Harold, 71, and grand-daughter Sherry, 30.

Case History: Ellen has seven sons (none of whom remain in touch with her) and one daughter, Beatrice. Beatrice’s twin sister died very young, as did another sister. Ellen also had two miscarriages (both female). Since birth, Beatrice has never willingly spent time apart from Ellen. Sherry has also always lived with the family: she was taken out of mainstream schooling when nine as they felt unable to be separated. The family has been known to social services for about three years. Following complaints, environmental health identified a need to rehouse the family because of chronic neglect of the property; it being full of several years’ worth of domestic refuse and infested with fleas, flies and rodents. There were concerns about the serious neglect of Ellen and her home. Although reluctantly admitted to hospital, Ellen requested that she go home.

Dilemma: Although Ellen had her right to freedom and family life this had to be weighed against the social worker’s duty of care.

Risk Factor: With the family failing to engage and permit a home environment assessment, any return home would be a return to neglect.

Outcome: Ellen finally agreed to a nursing home placement. She died a short time after this.

In 1999, the first BBC series of A Life of Grime revolved around the remarkable 80-year-old Edmund Trebus and his daily battles with Haringey Council in north London. A resilient and defiant man, who hoarded rubbish in his house and garden, he resented intervention.

However, the council feared for his health and safety and that of others. Mr Trebus finally gave in and moved into residential care, where he later died.

Last year, in south London, practitioner manager Kristina Powney took over the case of 95-year-old Ellen Ferguson and uncovered what, in a way, amounted to a family of female Mr Trebuses. Ellen, her daughter Beatrice, 65, and grand-daughter Sherry, 30, had always lived together, had never been apart and had never worked.

“The accommodation was piled high with bags of worthless domestic refuse,” says Powney. “They would leave very early in morning and return late at night armed with sacks of refuse – filling the place up. There were flies, fleas, mice, and the smell – with urine and excreta everywhere – was very strong.”

There were many other unusual traits. “Beatrice would push around Sherry in a three-wheeled wheelchair even though she wasn’t disabled. And Beatrice wore the same red coat for eight years – and never took it off.”

For Powney, the psychological perspective was intriguing. “The family dynamics showed strong evidence of enmeshment and negative emotional attachment,” she explains. “There were no boundaries or rules in place. They didn’t seem to have individual opinions – they seemed to think and function as one.”

Given this, Powney was unable to adopt a particular style of working. “I would have considered systemic family therapy had
they been less reluctant to engage.”

However, an opportunity arose when Ellen was admitted to hospital with pneumonia and advanced neglect. “An assessment identified substantial need for action to be taken,” says Powney, who had been regularly seeking legal and management direction. “Care plans were produced for both options of placing her in an identified nursing home and putting in a comprehensive care package in the community.”

A psycho-geriatrician considered Ellen to have capacity to make decisions – and Ellen wanted to go home. However, the family refused to allow an assessment of the home environment making it impossible to judge the level of care package needed.

Says Powney: “The multi-disciplinary assessment identified substantial risk of physical neglect and deterioration in health if Ellen returned home without the right care package. I also needed to take the correct action in the eyes of the ward as Ellen was now delayed discharge and we had a placement waiting.”

The National Assistance Act 1948 section 47 – removal of an elderly person to a place of safety – and the possibility of a guardianship under the Mental Health Act 1983 were considered. “Both options seemed severe and heavy-handed in light of Ellen’s age and frailty,” says Powney. “My dilemma was that taking legal options would cause significant distress. But taking no action and returning Ellen home risked rapid physical decline and death.”

Even so, with Ellen being assessed as having capacity to make informed choice, this limited the legal recourse available.

“Knowing the family history and extreme level of neglect I was concerned as to what criteria had been used to assess mental capacity,” explains Powney. “I referred to examples of case law where family or external coercion was seen to have influenced a service user making independently informed choices.”

After six months of considerable work attempting to engage with the family, Ellen, who also contracted cancer, finally agreed to a nursing placement close by. “Ellen settled reasonably well and on visiting her she was comfortable, conversational and accepting of the care she was receiving,” says Powney.

Ellen succumbed to a cancerous lesion, dying even before the initial six-week review could take place. The family completely disengaged with services and declined any further contact. Despite this Powney felt she had little choice but to do what she did.

“To return someone to where you know they will be neglected – she lay in her own excreta for days and weeks at a time. To return her to that would have been neglect on our behalf.”

Arguments for risk

Ellen had been assessed by a psycho-geriatrician as having capacity to make decisions. Her decision was to return home to the only family life she had ever known.

What would the effect on Ellen be of being placed in nursing care as opposed to being returned home? You would need to consider her age, health, lose of autonomy, distress at being placed, and her human rights.

Given her state of health you could argue that Ellen’s death was imminent – and medical opinion could have backed that up – and a decision could have been taken in that light. She had lived that life – why not permit her to die that life?

This case highlights the perennial dilemma of social work intervention: damned if you do and damned if you don’t. Ellen died when she was removed from what she knew: but we can never know for how long she might have survived if she had been permitted to go home.

Arguments against risk

The decision was not taken lightly. Powney constantly sought the opinions of other professionals involved. She says: “It is important when managing complex cases to seek support and advice from colleagues and in the case of clients in hospital to seek feedback from multi-disciplinary team meetings.”

The family proved very mistrusting of social workers and was unwilling to engage with or accept services. “I couldn’t get across the door; they wouldn’t let me in,” says Powney. “I’d end up talking through the letterbox and passing bits of paper through.”

Ellen did want to go home. But, as Powney says: “You could see the headline waiting to be written: ’95-year-old bedridden grandmother returned to die in squalid environment’. We have a responsibility to listen but we also have a duty of care.”

There were also practical concerns. It would have been difficult to get carers into the home because of health and safety concerns.

Independent comment
My study, a favourite place, is disgracefully disorganised. I clearly cannot be trusted to keep the spaces I inhabit in any sort of proper order, and were it not for my caring wife, I suspect that I would risk being sent to a home as no longer able to look after myself, writes Jef Smith.

It’s true that Ellen Ferguson and her family challenged conventional norms rather more radically than that, but their eccentricity differed only in its scale. Their set-up was weird, filthy, and physically and psychologically unhealthy, but they apparently liked it that way.

Which is not to say that Kristina Powney was wrong to look for a safer environment for Ellen. Social work should be about widening vulnerable people’s choices and she was right to counter family pressures and offer an alternative lifestyle, particularly as Ellen’s increasing frailty was turning her from a willing participant into a victim of neglect.

She retained the capacity to take her own decisions, said the appropriately consulted expert, so action against her will would have been both unethical and unlikely to succeed. Plenty of time was allowed for her to think about the next step, which despite her understandable anxiety she seemed not to have regretted. To attribute her death to the move would be facile; 95-year-olds with advanced cancer tend to die.

My only quarrel with Powney is her allowing the possibility of media criticism to affect her judgment. Social workers, almost by definition, take difficult decisions. We must have the courage of our convictions and be prepared to justify well-considered action.

Jef Smith is a writer, trainer and consultant in the care of older people