Communication issues
100. Poor communication, according to the evidence
we received, constitutes a major problem in palliative care. This
is a critical issue, identified as a key goal in the GSF. At every
stage of care, good communication can radically affect patients'
and carers' attitude to the patient's condition. One particular
problem, which the NICE guidance seeks to address, is the multiplicity
of different people patients and carers currently see. A Marie
Curie hospice in Edinburgh found that the average cancer patient
coming to a palliative care service had met 32 doctors in the
course of a two and a half year illness.[105]
101. A good feel for some of the problems that arise
came in the memorandum from the Health Service Commissioner for
England. She suggested that the lack of effective communication
constituted "the most common cause of concern among patients"
and noted that this could have "a devastating effect".
She listed three anonymised cases which indicated the range of
problems:
A recent investigation of a complaint about
palliative care provided in an acute Trust identified the failure
to integrate the patient's palliative care, which was provided
by Macmillan nurses, with her ward-based care on a surgical ward.
As a result, the palliative care team had no input to the patient's
care plan and the ward nurses had no access to the clinical notes
maintained by the palliative care nurses, which were not part
of the ward nursing notes. As a result, neither team took responsibility
for overall management and the patient remained on a general surgical
ward for much longer than was appropriate, because neither her
family nor the ward staff were aware of the referral system to
the Macmillan Unit within the Trust.
In another case, I found that there was considerable
confusion between Trust staff and the patient's family as to what
constituted palliative care. The patient was in the final stages
of a terminal illness and his family agreed with staff that he
would be kept comfortable but not actively resuscitated. There
were then a number of interventions by medical staff which Trust
staff maintained were congruent with this agreement but which
were interpreted by the family as a direct contravention of it;
as a result, the relationship between the family and Trust staff
broke down. I found that the absence of documented policies on
withdrawal of treatment and Do Not Resuscitate decisions led to
confusion among staff, and this was exacerbated by the absence
of a documented agreed plan of care for the patient. This led
to the family receiving very mixed messages at what was already
an extremely difficult and distressing time for them.
In a third investigation, I found that there
was a lack of openness and transparency in the way in which decisions
were taken about the care of a terminally ill man. The Consultant
responsible for the man's care took a decision not to resuscitate
him in the event of a cardiac arrest, and noted this decision
in his clinical notes. However, neither the Consultant nor any
other member of Trust staff told the patient or his family that
the decision had been made, or involved them in discussion about
it. Whilst I understand that such discussions are not easy and
need to be handled with great sensitivity, it is clearly unacceptable
to deny patients and, where appropriate, their families the opportunity
to discuss such matters should they so wish.[106]
102. Dr Keri Thomas pointed to a problem with communication
between the day team caring for a patient and the out-of-hours
team. She suggested that electronic handover forms would be beneficial
(as already happens, for example, in parts of Canada).[107]
She also recommended that medical revalidation should include
a requirement to show satisfactory communication skills, perhaps
by means of workshops.
103. Some specific communication issues were raised
in evidence. For example, the Motor Neurone Disease Association
described the need to establish good communication about the patient's
wishes whilst the patient retained the faculty of speech.[108]
ACT noted how in children's palliative care services health professionals
were often more comfortable discussing cases with the parents
and carers of children rather than with the children themselves.[109]
Cancer BACUP identified a weakness in the frequent lack of explanation
about community-based services once patients had been discharged
from hospital.
104. We hope that
the widespread dissemination of the Gold Standards Framework as
a tool to ensure that information follows the patient will do
something to address the major issue of communication failure
in some palliative care. We also believe that gaps between health
and personal social care contribute to communication failures.
105. As we have
noted in other inquiries, the delays in establishing electronic
patient records consistently act as a barrier to good communication
between health professionals and patients, families and carers.
We believe that the introduction of electronic patient records
in palliative care would be particularly beneficial to patients,
given the need for so much support to patients out of normal working
hours, and the need to involve a wide range of health professionals
in care at the end of life.
Governance
106. Until recently, regulation of care homes was
the responsibility of the National Care Standards Commission (NCSC).
As a consequence of recent changes in the regulatory arrangements,
responsibility for regulation of stand-alone hospices now falls
to the Commission for Health Audit and Inspection (CHAI), whilst
the Commission for Social Care Inspection (CSCI) has responsibility
for adult services and outreach.
107. Several witnesses stressed that there were too
many different regulatory bodies (though often they failed to
distinguish between statutory organisations and peer review bodies).
St Michael's Hospice in Harrogate suggested that the peer review
inspection it was subject to lasted three days, was conducted
to a high standard and was very useful, whereas that from the
NCSC had lasted a few hours and was "superficial", mainly
looking at compliance with legislation.[110]
The Cotswold Care Hospice felt that NCSC regulation had been cumbersome
and was governed by a "ticking the box" mentality.[111]
Help the Hospices contended that it would be better if standards
were built around the patient's needs rather than the relevant
provider organisation.[112]
108. Evidence we have taken demonstrates that the
current regulation of palliative care services is unsatisfactory.
For example, a hospice at home that is part of an in-patient service
is regulated under a different framework from a stand-alone hospice
at home team.[113]
This discrepancy is going to get wider with the establishment
of CHAI and CSCI. Patients at transition from a children's to
an adult hospice are denied continuity of care.[114]
As a consequence of anomalies in standards regulation: "There
is a two tier system in place where 18 year olds with new diagnoses
are not eligible for services available to other 18 year olds
who have a long-standing diagnosis."[115]
109. We recommend
that the Government review the regulatory inconsistencies that
beset hospice and palliative care service providers, and ensure
that these are removed in the interests of simplicity, fairness
and ease of use. We do not believe that these inconsistencies
have been adequately addressed in the latest restructuring of
the regulatory bodies (which came into effect only in April 2004),
or by the Memorandum of Understanding that has been developed
between CSCI and CHAI. This should be tackled as a matter of urgency
if these new organisations are to have credibility.
98 Q3 Back
99
Ev 215 (Dr Keri Thomas) Back
100
Ev 215 Back
101
Q172 Back
102
See www.lcp-mariecurie.org.uk Back
103
For further information see the memorandum from John Ellershaw
and Deborah Murphy, National Clinical Leads-Specialist Care, Ev
233-35. Back
104
DoH Press Notice 26/12/03; Q3 (Professor Mike Richards) Back
105
Ev 69 Back
106
Ev 179 Back
107
Ev 212; Q169 Back
108
Ev 137 Back
109
Ev 129 Back
110
Ev 187 Back
111
Ev 194 Back
112
Ev 81 Back
113
Q143 Back
114
Ev 264 (Association of Children's Hospices) Back
115
Ev 270 (Dr Lynda Brook, RLC-NHS Trust and Merseyside and Cheshire
Children's Palliative Care Clinical Director) Back
