APPENDIX 1
Memorandum by Ann Abraham (PC 1)
INTRODUCTION
1. In my capacity as Health Service Commissioner
for England I have investigated a number of complaints covering
aspects of NHS-funded palliative care and I welcome the opportunity
to contribute to this Inquiry by the Health Select Committee.
In particular, I am pleased that the Inquiry will cover the provision
of such care in all of its settings, and will look too at the
wider context and related support services. The experiences of
people who receive palliative care will in many cases cross organisational
boundaries and, as a result, so will complaints about the service
and recommendations for improvement. My comments in relation to
the Committee's terms of reference relate to the following areas.
CHOICE
2. Palliative care can be provided in an
acute setting, in care homes and hospices, in the community, or
sometimes in a combination of settings. In my view, it is extremely
important that patients and their carers are provided with full
information about the services available, and that they are involved
in decisions about care. When patients face life-threatening illnesses,
both they and their families can feel disempowered. Many of the
complaints which come to my Office are from carers who feel they
have been excluded from the care of a dying loved one, and denied
the opportunity to care for that person at home in the final stages
of an illness.
3. The involvement of different agencies
can also lead to patients and their carers feeling bewildered
by their status and the relationships between them. In my experience,
the interfaces between health and social services and the statutory
and voluntary sectors do not always operate effectively and patients
and their families have to deal with complex and opaque arrangements
at a time when they are at their most vulnerable. Without a clear
understanding of the options available to them, people cannot
exercise informed and meaningful choices.
COMMUNICATION
4. The involvement of several different
agencies in the provision of care makes effective communication
between all parties critical. In my experience, the most common
cause of concern among patients and their carers is the lack of
effective communication, and I have seen cases where communication
failures have had a devastating effect. It may be helpful to the
Committee if I illustrate this with some examples from my work.
(i) 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.
(ii) 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 (DNR) 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.
(iii) 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.
CONCLUSION
5. I hope that the Committee finds these
views helpful. I would be very happy to provide any further information
if required.
February 2004
|
