Select Committee on Health Written Evidence


Memorandum by Ann Abraham (PC 1)


  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.


  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.


  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.


  5.  I hope that the Committee finds these views helpful. I would be very happy to provide any further information if required.

February 2004

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