Double the dilemma

The names of service users and family memebers have been
changed.

CASE NOTES
PRACTITIONERS: Jennie Fisher, community care worker
(hospital link) and Giles Gardner, operations manager.
FIELD: Older people’s services.
LOCATION: Devon.
CLIENT: Bernard Dobson is an 87-year-old man
living with his wife, Olive, who is 86. 
CASE HISTORY: About two years ago Bernard first
became known to social services because his memory began to fail
and he joined the early on-set dementia group. A package of care
was put together – mainly to help with getting Bernard up in the
mornings because he struggled to initiate his own care – to keep
him at home with Olive, who was able to care for him the rest of
the time. Things carried on reasonably well for about six months
before Bernard suffered a dense stroke, so severe that at the time
there were worries he might not survive. He was admitted to the
local acute hospital and remained there for several months.
DILEMMA: Olive, an active and able woman, wants
Bernard to come home but there is a feeling that nursing care might
be inevitable. RISK FACTOR: Bernard’s demanding
physical and medical needs might be too much for Olive to cope with
despite her resolute commitment.
OUTCOME: Bernard has moved back home with a
complex and comprehensive care package, and although he is still
too ill to move about yet,  Olive is coping admirably.

Each year more than 130,000 people suffer a stroke in England
and Wales, where it is the third most common cause of death, after
heart disease and cancer. Stroke is also the largest single cause
of severe disability with more than 250,000 people being affected
at any one time.

Early last year Bernard Dobson, an 87- year-old man who had begun
to experience dementia became another stroke statistic. His “dense”
stroke was so severe it left him unable to do anything for
himself.

He suffered receptive dysphasia (difficulties in understanding
what’s been said) and expressive dysphasia (difficulties in finding
the words to express himself). His inability to swallow meant he
had to be Peg-fed: percutaneous endoscopic gastrostomy (PEG),
developed in 1980, is a way of feeding people who cannot physically
eat but can still digest. He also contracted a severe skin
condition causing his skin to peel simply by touch.He then caught
MRSA.

Bernard was moved to the local community hospital where he stayed
for about five months. “There are rehab facilities there but
although we had a speech and language therapist, an occupational
therapist and physiotherapist working with him, it was felt that
there wasn’t a great deal of potential. Sadly, it seemed inevitable
that Bernard would be placed in a nursing home,” says hospital link
community care worker, Jennie Fisher.

However, a visit to Bernard’s wife, Olive, began to change
perspectives. “She was adamant that she wanted to care for him at
home. She was very able and had worked in care homes for older
people. So, that became our aim. But Olive was also realistic in
knowing that if the risks proved too much then she would accept
that,” says Fisher.

“That’s what happens if you involve people in the planning
process,” adds operations manager, Giles Gardner. “We have to be
clear about assessing risks and being realistic with carers about
what they are able to do. When you work with people in an open and
honest way, they are likely to accept your professional judgement.
It’s when you make decisions without including people that you get
problems. But Olive was included from the start.”

The Dobsons’ home – a level-access bungalow – seemed fine for
Bernard’s return and the district nurse was happy to provide
support alongside social services. Meanwhile, says Fisher, Olive
became involved in Bernard’s hospital care: “She was willing to
make the two-bus, 15-mile journey each day to work with the nurses.
She learned how to use the pump that would feed him and other
necessary equipment that would be needed at home.”

And that equipment was extensive and expensive, including a
hospital bed, a special pressure mattress because of his poor skin
condition, adapted wheelchair, the peg-feed and pump, and
ramps.

But the challenge clearly brought out the best in people. Says
Fisher: “The couple have a beautiful garden. Olive aimed to have
Bernard sitting in the garden – so it was important to have access
around the side of the house. So, our occupational therapy
technician visited several times to look at ways to make that
possible.”

Bernard finally moved back home last August. “The district nurse
went in twice a day at first to make sure his skin stayed intact as
much as possible, and check the Peg-site. Olive deals with the peg
but has trained two agency carers so she can have a break,” says
Fisher.

However, the case presented a strong financial dilemma. As
Bernard’s needs were health-oriented, health was asked to split the
cost of the £742-a-week care package, but agreed to pay only
30 per cent. “Clearly the cost of a nursing care home would be
cheaper,” adds Gardner. “We could meet our obligations in terms of
eligibility by placing him into nursing care, but we haven’t –
which is why it was critical for us to negotiate a contribution
from health. We have to reconcile the Dobsons’ best interests with
our budget and ethics. Unless all agencies had got together there’s
no way this could have happened.” Indeed, proposals that all
complex care packages should be split 50-50 between health and
social services are now being discussed.

Fisher continues to monitor progress. “He will never really make
any huge improvement but it’s nice to see him at home in bed – he’s
still too ill to get about yet – looking relaxed and happy. Olive
has got what she wants as well,” she says. CC Each year more than
130,000 people suffer a stroke in England and Wales, where it is
the third most common cause of death, after heart disease and
cancer. Stroke is also the largest single cause of severe
disability with more than 250,000 people being affected at any one
time.
Early last year Bernard Dobson, an 87- year-old man who had begun
to experience dementia became another stroke statistic. His “dense”
stroke was so severe it left him unable to do anything for
himself.

He suffered receptive dysphasia (difficulties in understanding
what’s been said) and expressive dysphasia (difficulties in finding
the words to express himself). His inability to swallow meant he
had to be Peg-fed: percutaneous endoscopic gastrostomy (PEG),
developed in 1980, is a way of feeding people who cannot physically
eat but can still digest. He also contracted a severe skin
condition causing his skin to peel simply by touch.He then caught
MRSA.

Bernard was moved to the local community hospital where he stayed
for about five months. “There are rehab facilities there but
although we had a speech and language therapist, an occupational
therapist and physiotherapist working with him, it was felt that
there wasn’t a great deal of potential. Sadly, it seemed inevitable
that Bernard would be placed in a nursing home,” says hospital link
community care worker, Jennie Fisher.

However, a visit to Bernard’s wife, Olive, began to change
perspectives. “She was adamant that she wanted to care for him at
home. She was very able and had worked in care homes for older
people. So, that became our aim. But Olive was also realistic in
knowing that if the risks proved too much then she would accept
that,” says Fisher.

“That’s what happens if you involve people in the planning
process,” adds operations manager, Giles Gardner. “We have to be
clear about assessing risks and being realistic with carers about
what they are able to do. When you work with people in an open and
honest way, they are likely to accept your professional judgement.
It’s when you make decisions without including people that you get
problems. But Olive was included from the start.”

The Dobsons’ home – a level-access bungalow – seemed fine for
Bernard’s return and the district nurse was happy to provide
support alongside social services. Meanwhile, says Fisher, Olive
became involved in Bernard’s hospital care: “She was willing to
make the two-bus, 15-mile journey each day to work with the nurses.
She learned how to use the pump that would feed him and other
necessary equipment that would be needed at home.”

And that equipment was extensive and expensive, including a
hospital bed, a special pressure mattress because of his poor skin
condition, adapted wheelchair, the peg-feed and pump, and
ramps.

But the challenge clearly brought out the best in people. Says
Fisher: “The couple have a beautiful garden. Olive aimed to have
Bernard sitting in the garden – so it was important to have access
around the side of the house. So, our occupational therapy
technician visited several times to look at ways to make that
possible.”

Bernard finally moved back home last August. “The district nurse
went in twice a day at first to make sure his skin stayed intact as
much as possible, and check the Peg-site. Olive deals with the peg
but has trained two agency carers so she can have a break,” says
Fisher.

However, the case presented a strong financial dilemma. As
Bernard’s needs were health-oriented, health was asked to split the
cost of the £742-a-week care package, but agreed to pay only
30 per cent. “Clearly the cost of a nursing care home would be
cheaper,” adds Gardner. “We could meet our obligations in terms of
eligibility by placing him into nursing care, but we haven’t –
which is why it was critical for us to negotiate a contribution
from health. We have to reconcile the Dobsons’ best interests with
our budget and ethics. Unless all agencies had got together there’s
no way this could have happened.” Indeed, proposals that all
complex care packages should be split 50-50 between health and
social services are now being discussed.

Fisher continues to monitor progress. “He will never really make
any huge improvement but it’s nice to see him at home in bed – he’s
still too ill to get about yet – looking relaxed and happy. Olive
has got what she wants as well,” she says.

Arguments for risk

• Olive wanted Bernard home and workers were satisfied that
  Bernard wanted this too.
• Olive proved herself committed and capable not least through
  playing an active part in his care at hospital. 
• However, workers were clear that while they would aim for
  getting Bernard home the reality might be different: “Over the
  months we were debating whether he would be able to go home or not.
  Olive is a bright lady and she knew that we had to meet Bernard’s
  needs first and although ideally she’d like to be able to do that
  herself, she knew that it might not happen,” says Fisher.
• The care agency commissioned to provide care should Bernard go
  home also came to work at the hospital to help build up a
  relationship.
• Respite care is available to help give Olive a rest; she hasn’t
  taken up that option yet but is hoping to visit one of her sons in
  Bristol over Easter.  

Arguments against risk

• Bernard was and still is in very poor health. His stroke has
  meant that he can do virtually nothing for himself. His complex
  medical needs should not be placed in the hands of his 86-year-old
  wife. She may be loving, caring, committed and able but Bernard
  needs expert and experienced nursing care. Olive’s care work was in
  residential care and not nursing care – which is the type of care
  that Bernard clearly needs.
• “It would be easier to have all the care under one roof in a
  residential setting,” concedes Fisher. Indeed, not only easier but
  considerably cheaper to boot. Olive was accepting that nursing care
  might be the preferred option and thus, although disappointed,
  would not have resisted the decision to move Bernard into a safe,
  secure 24-hour care setting. 
• It seems that aspects of care needed two or sometimes three
  people to deal with – so how could one person care for Bernard
  effectively around the clock?

Independent Comment
Anyone who has a seriously disabling stroke would
like to be able to look forward to an improvement in their
faculties, but people in their late eighties in that position may
be more prepared than some younger people to accept their condition
with a degree of equanimity. What they or their relatives should
never agree to is their being written off as hopeless cases for
whom quality of life has ceased to have any meaning at all, writes
Jef Smith.

Sadly, for older stroke victims like Bernard Dobson, extensive
rehabilitation is not an option; but it was still a proper
objective for health and social services to help him enjoy to the
full his remaining powers in the later years of his life.

The cost of the package Bernard needed cannot, of course, be
overlooked. To allocate such substantial resources to one person’s
care may have deprived others. But who could say that this was not
money well spent? Cost-splitting in such situations remains
absurdly ambiguous. 

There was little serious risk involved in Bernard’s going home
rather than into residential care. But Olive sounds like the ideal
carer, with relevant work experience, immense energy, admirable
determination, the capacity to accept and work with professional
help and – critically important – the realism to acknowledge that
the situation might have had to be reviewed if circumstances
changed. Their bungalow and garden provided an almost
purpose-designed environment for care. Inspired by these factors,
practitioners like the technician and the domiciliary care workers
pulled out all the stops. Full marks!

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