The family of a woman of 84 are at a loss at what to do when, despite her strong desire to live at home, it becomes clear she is unable to live independently
On 8 February 2009, an 84-year-old woman, Sarah,* was admitted to hospital in south London after falling and breaking a small bone in her pelvis.
She has recently been diagnosed with emphysema (a lung condition) and is being treated for depression. She has been living on her own since her husband died in 1998 but is reasonably happy and regularly visited by family and friends.
During her hospital stay she appears confused about where she is and why she is there.
She is discharged after two weeks, with medication and a care package (two half-hour visits a day from council-appointed care providers, plus extra care arranged by her family). Meanwhile, her mental health is monitored during trips to a nearby day hospital.
● Mid-February The care package begins to fail as Sarah’s care workers struggle to offer medication at the right times and she fails to direct them as to how they should be helping her. Sarah’s behaviour has become unpredictable.
● Mid-March Sarah is re-admitted to hospital after complaining of severe pains in her legs.
● 9 April Sarah is discharged at short notice with medication. She now has a range of medicines at home to treat everything from constipation to depression. Family members look after her over Easter and are shocked at her mental and physical decline. It quickly becomes clear that she requires specialist help.
● 14 April A crisis arises on her first day back home, and an ambulance and doctors are called. An emergency bed is found at a mental health trust assessment centre where many patients suffer degrees of dementia. Sarah is angry and confused at being admitted, and alarmed by staff and fellow patients. She gradually settles, although often comments that she is looking for a way to kill herself. Signs of dementia and disturbed sleep patterns are evident.
● May A consultant psychiatrist tells Sarah’s family that her assessment has reached no conclusions. Her relatives are told she will be discharged home with day centre provision and care from workers from mental health charity Mind UK. They are also told a bed will be held for her at the centre for one week. There is talk of “cognitive impairment” rather than full-blown dementia.
● 2 June Sarah is discharged home. No Mind UK care workers are available and no day centre provision is available. Three half-hour visits from council carers are set up at the last minute after frantic phone calls by her care manager. No discharge notes are seen by the family and there is no diagnosis. Relatives are told Sarah’s assessment is continuing.
● 4 June Sarah is admitted to hospital at 5pm suffering from a chest infection and confusion. There may have been a further fall. A paramedic declares her house unsafe.
● 11 June Family members take Sarah to a care home that they had found and liked. They decide to privately fund a place to avoid further red tape. The care home owner had visited Sarah in hospital to check her suitability for her facility. She is happy that Sarah will settle in. The hospital sends medication over by taxi late at night. There is little in the way of notes accompanying the discharge.
● 15 June Sarah’s second escape from the care home and a shouting match with care staff persuade the home owner and family members that residential care is not the answer. Sarah is taken home and cared for by her family for the rest of day. Sarah’s care package is reinstated after a frantic call round.
● 16 June Sarah is readmitted to hospital after an episode of severe shaking, high temperature and delirium. A urinary tract infection is diagnosed.
● 17 June One doctor’s talk of discharge alarms Sarah’s family, who respond with a barrage of phone calls to hospital medical staff, social workers and their peers at the mental health trust. Sarah’s family is at a loss as to what to do next.
* Not her real name
Barry Clewer, chair, Birmingham Advisory Council of Older People
The hospital should try to find out what caused Sarah’s falls – tripping over, failing sight, giddiness, house clutter? A family member – the one closest to her if possible – should be at her side at all times while being diagnosed to explain things if she does not appear to understand what the medical staff are saying, but not take over. Words of comfort and love would not be out of place at this time.
If the information that Sarah had emphysema and was being treated for depression was given to the hospital, then it is to be hoped that staff would contact her GP for the details. Unfortunately, however, hospitals don’t always seek information on original treatment. This can mean they stop the original prescribed drugs without knowing the patient’s background.
While in hospital, I assume Sarah and her family were seen by a social worker to discuss Sarah’s background. The family should have politely asked to have been visited by council care staff to identify Sarah’s benefit status and see whether she could purchase private extra care. Any care provided by the family would be a bonus.
Visits by the district nurse to administer her medication, and by a member of a voluntary sector group such as Dementia Information or a carers’ support group, should also have taken place.
Maureen Sheridan, social worker and Frances Anderson, community care officer, Integrated Discharge Planning Team, Luton & Dunstable Hospital, Bedfordshire
It would appear that there has been a series of poor outcomes for Sarah.
There has been a lack of integrated working which, had it happened, would have promoted the values of independence, empowerment and choice for Sarah, been empathetic towards the family, and made effective use of the knowledge and skills of health and social care professionals.
Sarah’s initial discharge home led to poor outcomes. Effective management of her medication and clear instructions on the care-plan were not implemented. A meeting with Sarah, her family and other professionals, including a community assessment of medication, should have taken place to review the home situation.
After her crisis at home, Sarah could have been offered a community psychiatric assessment instead of being admitted to an emergency bed. The potential increase in her confusion may have arisen from yet another change in environment.
Her psychiatric assessment should have taken place only when she was infection free, because infection can exacerbate mental state. Having been assured that community services had been sourced for Sarah’s discharge – which was not the case here – integrated care planning could have prevented her failed discharge.
On re-admission to hospital on 4 June and 16 June, Sarah should have been referred to social services to ensure that she received a full assessment, appropriate services and financial support according to the Fair Access to Care guidelines and Community Care Act.
The family’s decision to self-fund appears to derive from a lack of options and collaboration with health and social care professionals, rather than as a result of an informed debate.
The family’s reaction to one doctor’s talk of discharge reflects their historic experience of hospital discharges involving Sarah. A discharge should not proceed without a multi-disciplinary team meeting involving the service user and their family to reach an agreed discharge plan.
To conclude, improved integrated working comprising of assessments from all professionals and communication between all parties would have resulted in a range of alternative options being explored and resulted in improved outcomes for Sarah.
Family’s point of view
The experience has exposed a real absence of services that can support independence. It seemed that she was continually being set up to fail by health and social care staff who had failed to properly assess Sarah’s issues, beyond mental health tests, in which she scored well.
The attitude always seemed to be “send her home and see how she gets on”. The care provided was absolutely minimal; three half-hour visits a day was never going to suffice. Private care was also organised but confusion ensued over medication. The home care workers became a source of anxiety to Sarah who was losing the ability to work out who was visiting and when.
Perhaps in future, telecare developments and better quality home care services provided by trained and knowledgeable staff could help more people with cognitive impairment/mild dementia to remain at home.
To this date no member of Sarah’s family has ever heard directly from a member of the medical profession about what precisely is wrong with her. She is now in a care home for people with Alzheimer’s; a situation which has made her at times angry and despondent.
One of Sarah’s sons, name and address supplied
This article is published in the 9 July issue of Community Care magazine undet the heading Can’t live at home, can’t lve in care