Exercise 1: Case study review of ‘James’
Please read the case study report into the circumstances leading to the
death of James. In your group, and thinking from a holistic perspective:
1. identify any potentially modifiable factors in relation to his death
2. discuss what actions, in hindsight, social care providers could have
taken to address any of these potentially modifiable factors.
Case Summary: ‘James’
James was the youngest of three children. He was identified as having
learning disabilities but the cause was never known. During his childhood,
James attended mainstream primary school but then moved to a special
unit in the grounds of the mainstream school at the age of 11. He was
described as being quite a character during his school days and was well
known in the local community.
James loved getting out and about and interacting socially with other
people. He enjoyed going to the cinema and going out for family meals. He
loved going out in the car even if just for a drive. James preferred going to
places that were busy and noisy rather than quiet. He liked going to the
shopping centre where he could ‘people watch’.
James used a wheelchair to get around in. He could partially weight bear,
but always needed at least one person to support him and in general his
posture was very poor. James was doubly incontinent and wore pads
during the day and night. He was unable to let people know when he
needed to be changed. James had very limited verbal communication. He
let people know what he wanted or how he was using utterances and
vocalisations. When he was unhappy he would cry and scream. When he
was in pain he would become quiet and pale. His family became very used
to recognising James’s needs but others found it more difficult to do so until
they knew him very well. James required all of his food and drinks to be fed
to him. He indicated when he was not wanting to eat by closing his mouth.
He could be very stubborn when it came to food and frequently coughed
and spluttered on his food. In later years, care staff thickened or pureed all
of his food because they thought that this might help him swallow better,
but he had never had a formal swallowing assessment.
James lived at home until he was 20 when he moved into a residential care
home with two of his friends. This was seen by James and his family as an
opportunity to secure his future. At first James appeared to settle in well but
after three months his behaviour deteriorated and he started screaming
and crying a lot. His family was particularly concerned by this, but the care
home staff felt that it was the settling in process and that James would
soon settle. However James remained unsettled and at times distressed,
and after an admission to hospital with aspiration pneumonia his parents
took him home and refused to let him return to the care home as they felt
that he did not like there.
During the following couple of years James’s older siblings left for
university and his parents separated. His mother found it very difficult to
look after him and he moved to a different care home. Apart from the care
home staff, a day centre that he attended for two sessions each week, and
very occasional visits to his GP, James was not in receipt of any other
services.
Health
James experienced many coughs and colds as a child which often
developed into chest infections. He missed several weeks of school each
year for chest infections, but these were just perceived to be ‘part of James’
not anything that could be changed.
His chest infections continued for much of his life. In 2002 and in 2005 he
was admitted to hospital with pneumonia. The admission in 2005
necessitated him being admitted to ITU. Again 2008 he was admitted to
hospital with aspiration pneumonia and it was felt that that his prognosis
was poor. However he did recover from these illnesses, although his family
felt that every time he had a chest infection he never fully recovered
afterwards. No proactive measures were taken to review the pattern of
these illnesses or to offer preventative measures.
James was on the register of people with learning disabilities at his GP
surgery, but had not had an Annual Health Check.
Events leading up to his death
James was admitted to hospital in December 2009 with aspiration
pneumonia. Again, it was felt that his prognosis was poor. A DNAR order
was entered into his notes by the admitting doctor with no rationale for this.
This was subsequently challenged by his family and retracted several days
later. The LD Liaison nurse was informed of James’ admission 5 days after
his admission. She supported the nursing team in looking after James,
instigated NG feeding (feeding via a tube through the nose) and arranged a
Best Interests meeting (as required by the Mental Capacity Act for people
without capacity to consent to treatment) regarding insertion of a PEG (a
tube inserted through the stomach wall through which someone could be
fed permanently) which had been planned for him.
James was rather hurriedly discharged the day before Christmas eve so
that he could be home for Christmas. An application for NHS Continuing
Healthcare (CHC) Funding was discussed and subsequently made.
However, this was not successful as it was felt that his nursing needs were
not intensive enough. A joint package of care between NHS and social
services was also not agreed.
By March 3rd, his PEG had still not been fitted, although it had been
scheduled and then cancelled three times. He remained nil by mouth and
on NG feeds during this time, and his condition was not reviewed by his
consultant. Records were not available to assess if he was losing weight or
what his fluid intake was. On 25th March he was unwell with a chesty
cough. He was seen by his GP the following day and prescribed antibiotics
via his NG tube.
The day afterwards he seemed ‘off colour’ and feverish. He was taken to
bed early, and was settled and sleeping at 11.45pm when checked. He was
found unresponsive and not breathing the following morning, and
resuscitation attempts by the care home staff and the ambulance crew
were unsuccessful. A post-mortem identified the cause of death as being
aspiration pneumonia.
Potentially modifiable factors
 There was no consistent record of James’s weight, although he was
under-weight and fed poorly. His fluid intake was not recorded with
any consistency either.
 He was not assessed by a Speech and Language Therapist nor did
he have a full swallowing assessment.
 James had severe postural problems that were not addressed. There
was a likely of timely appropriate postural support.
 He had repeated hospital admissions with chest infections, but had
no follow-up outpatient appointments to assess his needs more fully,
and his chest infections were uninvestigated. All the investigations
James underwent were reactive rather than proactive.
 There was no apparent attempt to investigate the cause of his
unhappiness when he was in his residential care home. There may
have been a physical basis for his distress or he may have needed
emotional support. Without appropriate pain profiling this couldn’t be
determined for James.
 James was on the waiting list for PEG. The surgery was cancelled
three times, and he died before the surgery was successfully
rescheduled. There was no clinical review of his condition when the
surgery was delayed, and no one effectively chased this up.
 He had not had an annual health check and did not have a health
action plan or hospital passport.
 He had a nasogastric tube and no review of this. No dietician was
involved.
 An application for Continuing Health Care (CHC) funding was refused
two months before he died because it was felt that his nursing needs
were not substantial enough. However James could have qualified for
this due to his level of nursing need (combination of poor swallow and
postural difficulties), and the decision should have been challenged.
 The GP should have had a higher threshold of concern for James
when he attended with a chest infection the day before he died. It
would have been good practice for James’ oxygen saturation to have
been measured at this attendance.
 There are concerns about the key principles of the Mental Capacity
Act and whether these were being put into practice by the hospital. In
particular, the DNAR order was not properly considered, and surgery
was going to take place without a Best Interests decision-making
process taking place.
 Any review of his placement had not picked up concerns about
managing his health needs proactively.