APPENDIX 49
Supplementary memorandum by Marie Curie
Cancer Care (PC 35B)
END-OF-LIFE
CASE STUDIES
The case studies show examples of where end-of-life
care has met—and has not met—the expectations of patients
and their carers.
These are real cases—not composites or
simulations. They have been supplied by Marie Curie Nurses working
in the community or at a hospice.
Some personal details have been changed to protect
the identity of the patients.
CASES WHERE
PATIENT AND
FAMILY/CARER
EXPECTATIONS WERE
MET
Case 1
Mrs D from the South West,
age 39 years. Diagnosis: Primary breast cancer with
liver, lung and brain metastases. Living at home with husband
and four year old daughter.
At the end of active treatment/diagnosis of
terminal stage, she had expressed her adamant desire to remain
at home to be with her daughter.
In common with most young patients she remained
independent for as long as possible, with her husband and sister
gradually attending to more of her physical and practical needs.
Sudden deterioration in her condition stretched
their capacity to cope and necessitated professional intervention
for the final phase (last four days of life).
Services involved:
GP
District Nursing Team
Hospice Community Nurse Specialist
Marie Curie Cancer Care
Hospice at Home Team
Nursing Agency
Hospice Social Worker.
The GP was informed of Mrs D's deterioration
by her husband. GP visited to assess and provide increased medication.
Requested District Nurse (DN) to visit for support and daily management.
DN alerted Hospice Community Nurse Specialist
who visited to provide emotional support to patient and family
and liaised with GP on symptom management (using her specialist
knowledge to give advice on appropriate medication regimes etc).
DN referred patient to Marie Curie Cancer Care
for daytime support and respite for carers, as Mrs D was restless/anxious
during the day.
Marie Curie Nurse (MCN) attended for 7 hour
daytime shift, allowing her time to fully assess needs. Recognised
further deterioration in Mrs D's condition and increasing strain
on family. Informed District Nurse of need for night-time care.
Hospital bed delivered next day—arranged
by DN.
Hospice at Home (H@H) team contacted to provide
overnight care as no MCN available.
Hospice Social Worker informed by MCN of need
to provide emotional support for Mr D (by telephone and one visit)
in helping his daughter to understand that her mother was dying.
Marie Curie Nurse attended for a seven hour
day shift the following day. Hospice at home Nurses provided further
two nights of cover.
District Nurses continued to attend once a day
to maintain continuity of care and co-ordination of services,
and bring any necessary extra equipment etc.
Patient's husband and sister were able to remain
involved in her practical care. Patient and family confident that
symptoms were being well managed and felt supported enough to
cope alone for short periods, well aware of whom they could call.
This gave them space and privacy to adapt to the changes.
The child was able to spend time with her mother
in familiar surroundings, with the minimum possible impact on
her daily routine.
A qualified agency nurse RGN provided cover
on the last night of patient's life as neither H@H nor MCN available.
Patient able to die peacefully at home as she
had wished. Family felt supported. Close friends visited at intervals
throughout final days to say goodbye.
Case 2
Mr P from the South West, age 52 years. Diagnosis:
Head and Neck cancer.
Living at home with wife and teenage sons. Coped
alone until final two and a half weeks. Mr P experienced suddenly
increasing weakness and difficult symptoms.
Services involved:
GP
District Nursing Team
Hospice Community Nurse Specialist
Marie Curie
Hospice at Home Team
GP made same day visits to monitor and control
pain as requested.
GP ensured that overnight emergency doctors
were familiar with patient's case in case call-out was necessary
by faxing daily up-dates.
DN visited daily for dressing neck wounds. Identified
family fatigue. Referred to Marie Curie Cancer Care for daytime
care as patient unable to be left alone (having significant bleeding
episodes) and wife needing a break.
Two day shifts per week from Marie Curie Nurses
were organised—allowing wife to go out. MCN had time to
fully assess situation and perform daily care outside capability
of family due to patient's weakness, eg assisting him with bath
and hair wash.
MCN liaised with GP over pain management and
control of vomiting. She was on hand to promptly respond to the
patient's rapidly reducing ability to speak, and arranged for
a speech therapist to deliver a Lightwriter machine that maintained
effective family communication for a valuable 48 hours.
Mr P was able to spend Christmas at home with
his family and died in January.
They felt confident to spend Christmas day alone
(after short District Nurse visit) because Mr P's symptoms were
well managed and they were aware of the help that would be available
if necessary.
MCN informed DN of need for increased practical
and emotional home care in final two days of life. H@H team provided
a qualified nurse for evening and overnight care. Hospice Community
Nurse Specialist provided telephone support and advice to family
and the professionals involved.
Having a nurse in the house enabled Mr P's sons
to ask questions and express fears and anxieties whenever they
felt the need. This facilitated family coping and was a great
relief to Mrs P.
Patient able to remain in the home he had hand-built
(he was a carpenter) and be with his sons who were reluctant to
visit him whenever he was in hospital, due to embarrassment over
his gross disfigurement.
Mr P died peacefully at home with his family
present.
Case 3
Mrs J from Newcastle, a 56 year old lady with
advanced ovarian cancer who had been admitted to a local hospice
with complex symptomatic needs. Unfortunately her condition deteriorated
rapidly and it became apparent that she was going to die very
soon. The patient was aware of this and rather afraid, however,
she did make the decision that she wished to die at home in her
own bed, with her family around her.
At 2.00 pm on Friday afternoon this lady decided
she wanted to go home as soon as possible as she was afraid she
may die over the weekend. The hospice staff "pulled out all
the stops" and liaised with several other agencies to facilitate
this patients discharge home that day. Ambulances were arranged,
the district nursing service were contacted to ensure help both
in the form of practical help and equipment were on hand for this
lady to be nursed at home. The family were very willing to help
in any way they could. District Nursing Service also liaised with
the Marie Curie Community Nursing Service to ensure this lady
and her family were able to be supported at home. Patient was
eventually discharged home successfully at 5.00 pm that day (within
3 hours of the patient's request).
The lady subsequently died very peacefully at
home with her family around her three days later. Her family were
delighted not only about the care that she had received but about
that fact that her last wish to die at home had been honoured.
Case 4
Mrs J from Surrey, the patient, a young married
woman with two young children, desperately wanted to live to see
her son's birthday and desperately wanted to stay at home. She
was in her own ordinary double bed and was adamant that she did
not want her home turning into a hospital with lots of medical
equipment. Marie Curie Cancer Care's Community Supportive Care
team—based at the hospice was finding it increasingly difficult
to manage her care in the double bed—especially since she
had an unstable spine and needed severe pain control. Some would
argue the easy option would have been to transfer her to a hospice
or hospital or keep her at home heavily sedated on the unsuitable
bed.
However, the team wanted to bring a hospital
bed to her home. This was discussed with the patient and her family.
They were advised that without the introduction of specialist
equipment into the home, an admission to a hospital or hospice
bed was the inevitable outcome.
The bed was delivered by two ambulance crews
who came specially to move the patient into the bed in the living
room. The patient's District Nurse also cancelled a dinner date
to ensure she could support the CSC Team. As a result of this
decision the woman was able to share her son's birthday and see
him open all of his presents. The CSC team also offered practical
and emotional support to the husband. He was a deeply religious
man who still hoped that God would intervene but they were able
to explain to him that she was in the process of dying and supported
him by explaining to him exactly what would happen. The woman
died comfortably with her husband holding her hand at 11.30pm
on the night of her son's birthday.
Good symptom control, practical support and
emotional support ensured that the patient received a good death
even in such tragic circumstances.
CASES WHERE
PATIENT AND
FAMILY/CARER
EXPECTATIONS WERE
NOT MET
Case 5
Mrs N from the South East, the patient, a woman
in her 70s, wanted to remain at home. Her husband was also very
keen that she should have her wish. She was supported by her District
Nurse and Marie Curie Cancer Care's Community Supportive Care
team and her symptoms were controlled with a syringe driver. The
CSC Team visited her twice a day but were unable to do so "on
demand" in the evenings. There was also no District Nurse
cover in the area where she lived after 10pm.
One evening the patient started to get a rattling
cough reflex—a common symptom that occurs near to death
in c50% of patients. The husband had not been briefed to expect
this by the GP, District Nurse or CSC team. (The issue of the
"death rattle" is addressed in the Liverpool Care Pathway
and should always be discussed in advance with carers, who should
be given a leaflet covering changes which occur before death,
which include diminished need for food and drink, changes in breathing
and withdrawing from the world).
The husband began to panic and tried to contact
the CSC team but may have dialled the wrong number. He also called
NHS direct and was cut off mid conversation. In total panic her
dialled 999 and the ambulance crew attending assumed the patient
was choking, even though the husband told them about her ongoing
care.
The patient, by now distraught, was taken to
Accident and Emergency. The hospital's palliative care team eventually
ascertained her condition and got her settled. She died the following
morning in a bed attached to the casualty department. The husband
was very angry and felt he had been betrayed.
Case 6
Mr W from South Wales. Patient: a 77-year-old
man who lived alone. His nearest family lived 15 miles away. He
was admitted to a Marie Curie hospice for symptom management—was
very weak, suffering from constipation, abdominal distension and
extreme nausea. He was adamant he wanted to go home to die and
told nursing staff and the admitting doctor of his wishes.
His condition got worse so hospice staff asked
the District Nursing team if they could hurry things along to
ensure he was supported at home. They said it was difficult to
provide the statutory five calls a day cover and would need social
services to look after his nutritional needs. Social services
argued it wasn't their responsibility because he needed nursing
care. Basically there were huge delays in finalising the patient's
care because of in-house financial politics between the DN Service,
Social Services and the Continuing Care Coordinator.
The patient's condition deteriorated even further
and he died in the hospice.
Case 7
Mrs A from the East Midlands, the patient was
a 54 year old lady with cancer of the oesophagus and a tracheotomy
that she cared for herself. Marie Curie Nurses attended over many
shifts and one in particular made great effort to contact the
DN, she had previously worked as a "Head and Neck" specialist
and really felt this lady might haemorrhage, that the family was
not prepared for such an eventuality and there was nothing in
the home to cope with such an eventuality.
Despite conversations with the DN, nothing was
put in place. It was harder to leave a note as the notes can be
accessed by patient and family when they are left in the home.
This lady was often discussed at clinical supervision. MCNs were
concerned at the circumstances she was caring for herself in but
accepted it was her choice and way of life. They were concerned
at the lack of affection and communication between the husband
and patient.
They were also curious at the bereavement cards
on display in the home and eventually the patient and husband
opened up (separately) to explain that their son had died of leukaemia
in January. This explained some of the tension and would have
been useful information to have received from the DN.
One night the lady self cared as normal, with
some assistance. At 6.00 am the MCN present helped sit her on
the commode as normal and noticed a trickle of blood from the
tracheotomy site. This particular nurse was not aware that haemorrhage
might be an issue and there was still nothing in the house to
suggest this may occur. She could not get the lady back to bed
as she was too weak, so she awoke the husband. Together they put
her to bed but she was now very ill and unconscious, blood had
filled the commode and gone to the floor.
The nurse was trying to work out if their were
any drugs she could give, as the patient had self administered
to this point and get some towels, meanwhile the husband panicked,
not unreasonably, and called the ambulance. They arrived quickly
but the MCN felt the patient had died, the husband was extremely
distressed as he was not prepared for the bleed or his wife dying,
however the paramedics explained they had to resuscitate. This
was upsetting for everyone, the nurse and husband could hear the
defibrillator being used in the ambulance. They followed to A&E
where the lady was pronounced dead.
It took a long time for the nurse to accept
she had done the best she could. Certainly the availability of
emergency drugs and a written DNR in the home would have helped,
it would mean that someone would have had to have had a significant
conversation and prepared this family. It would have given the
paramedics the permission they needed to leave this lady at home.
June 2004
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