It is important that data for the last weeks of life is collected and not only the last few days. Research suggests that most patients wish to die at home but in practice most patients die in hospital. However, where a person wishes to die may change depending
on the length of their illness, their symptoms and their home and family circumstances. Statistics
suggest that most people who die in hospital do so in the first week after admission (NHS Confederation 2005). This suggests that an acute event, exacerbation of symptoms or inability to cope with present situation necessitated admission to hospital. For
those patients terminally ill at home who were admitted and died within a week, what was the prompt for admission? Did the patients or family change their mind in the face of new or worsening problems? Some of the patients may have been admitted appropriately
for active treatment but there is likely to be a cohort of patients with terminal illness that could have been managed in an alternative setting if their potential deterioration was anticipated and pre-emptive care plans made. It
is important to collect this data to help us identify where services could be introduced or refined to prevent hospital admission. In addition, if success at managing patients at home until the point of death is measured only by recording place of death, a disservice
is done to the services that may have successfully managed patients in their own homes for weeks or months leading up to death. It
is in these final weeks that patients may most benefit from being at home more that in the last few days of life when they are often oblivious to where they are. Many patients choose to remain in hospital because they hope for a better outcome and do not reach
the stage where they accept they are dying. It
is important to identify :- · Where patients state they would wish to die. · Whether
this changes as illness progresses. · When patients are dying are the patient and family happy about where they are being cared for. ·
If a patient is admitted to hospital (or other inpatient/hospice unit) what prompted the admission? ·
Was the decision to admit taken by a professional or requested by the patient or family. · If patient/family request,
why did they feel the need for admission? · How long had the patient been ill, what level of professional and social support had been
required in the previous weeks and what had changed? · Was
the patient/family happy with the care and support at home? · Was the patient/family happy with the decision to admit to hospital? ·
What, if anything could have been provided at home to prevent hospital admission? This information would guide us more accurately
to what patients want and allow us to develop services to meet these needs. Sometimes surveys questioning
where people want to die are undertaken with people who are more well and not at the dying stage and may lead to unrepresentative statistics that create unachievable targets. Asking the questions above to the patients and relatives who are actually living the
experience will give us more accurate data. The
question is who will collect it and where can it be stored and analysed? What is required is a centrally accessible database. Many
palliative care teams in South East Wales use the ISCO system which may be able to support this initiative but this is not currently accessed by district nurses and other generalist staff. We are not aware of an existing system accessible to any professional
caring for the patient in the last days of life. A form could be devised to complete and centrally collected and analysed. A similar initiative was used when the Integrated Care Pathway (ICP) for the last days of life was rolled out and audited. This was successfully
managed and now has a large amount of Wales-wide data collected and is ongoing. As
most healthcare professionals caring for patients in the last days of life in Wales will be familiar with the use of the ICP, the questions above or similar could be an 'add on’ to the ICP if agreed by the Wales collaborative Care Pathway group. In
this way data could be collected for every patient put on the ICP. The data sheet could be posted to a central point for analysis as currently happens with the variance sheets from the ICP. Wider
use of the Care Pathway at the end of life will allow data collection from the variance sheets and will highlight needs. With appropriate support, it should be possible to use this template to collect further data and undertake some follow-up studies to assess
the adequacy of the service for patients without having to fund separate major projects. This,
research and audit data collection can be linked to ensure that information is available to inform service commissioning and planning. |
