Palliative care in intensive care: a new tool

Professor Irene Higginson

Professor Irene Higginson

Professor Irene Higginson, Director, Cicely Saunders Institute, Head of Department, Professor of Palliative Care and Policy, and Honorary Consultant King’s College Hospital NHS Trust, London, UK.

The Intensive Care Unit (ICU) is a highly challenging environment for patients and families. Patients are normally profoundly ill, making communication very difficult. Things can change very quickly, and there is a lot of information for families to take in. For this reason, it is a place where communication and support can be difficult and often can go wrong. Although recovery is the goal, because of the severity of illness many people in ICU deteriorate and/or die.

Our study, published in the October issue of BMC Medicine, developed and tested a new way to improve the care and communication for patients and their families in the ICU.

The study, funded by the National Institute for Health Research (NIHR) Research for Patient Benefit Programme, developed a simple assessment and communication tool called PACE – which stands for Psychosocial Assessment and Communication Evaluation. The goal of developing this tool was to improve assessment and communication for all patients in the ICU, both those who may deteriorate and equally those who may recover.

PACE consists of the training programme and an assessment, which is recorded in the person’s clinical record. The training programme involves combined work between the ICU and hospital palliative care team staff. The clinical record within PACE asks for assessment of five aspects of care – family details, social details, preferences, communication and information and any other issues, is completed by the key worker for the patient, usually a nurse within 24 hours of admission.

An initial assessment of PACE examined the views of family members on the ICU. From 213 family members, 78% responded to the survey, two-thirds had PACE completed. Those with PACE, had a significantly higher and better satisfaction with the honesty and consistency of information from staff and with symptom control of patients compared with those without PACE.

ICU staff also found PACE very useful. Ninety-five ICU staff members responded and completed the survey and 89% rated PACE as very or generally useful. Additionally, qualitative interviews with families suggested that PACE helps the staff to get to know the patient and family better, helps them feel that someone listens to them and is interested in them and their wishes, as well as in the purely biomedical aspects of the disease.

PACE now needs to be evaluated more widely and in a comparative, ideally randomised, trial and across other centres. There are similar needs for good communication and psychosocial care, and uncertainty, across health care. So PACE might be helpful in other settings especially hospitals.

1. Higginson I, Koffman J, Hopkins P, Prentice W, Burman R, Leonard S, et al. Development and evaluation of the feasibility and effects on staff, patients, and families of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty. BMC Medicine 2013, 11:213. PubMed PMID: doi:10.1186/1741-7015-11-213.

Useful links…
The Cicely Saunders Institute

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7 Responses to Palliative care in intensive care: a new tool

  1. Dear Professor Irene Higginson,
    I am reading this Article with great interest, and my attention is focusing on these words ‘… a new way to improve the care and communication’. Within Caring there is the whole Human Thinking, Speaking and Acting for the Other-from-me. And Speaking is the result of Thinking and the beginning of Acting. The right word, well thought and well said in the right context, at the right time in a right place can become Care for Mind-and-Body. As a Linguist, I am giving all my support in the field of the Non-Pharmacological Care for PreverbaOncologicChildren and their families. The concreteness and substance of words create a t m o s p h e r e s for These special Children. They listen so carefully that it seems as if they were eating and drinking those words. This happens because words are tailored just for ThatChild-in-Pain and he perceives new emotions, sensations and perceptions, and that builds his own precious-and-private World and owing to the power of word they listen to, the power of sign and gesture it is possible to enter his World.
    My best regards
    Luisella Magnani

  2. Pingback: Palliative care in intensive care: a new tool | EAPC Blog | All Things Palliative - Article Feed

  3. Most unfortunately the mix of palliative care in an ICU did not work at all for one case I know of. Same old problems – patient and relative kept in the dark. Conversations that did not happen recorded in notes, conversations that did happen not recorded at all and sometimes recorder incorrectly. ICU consultant are totally dependant on prognoses from other specialists. When these are clearly wrong the ICU is left with someone who is not going to die any time soon but is on palliation that is being ramped up all the time for no particular reason. ICU environments are simply not the place where palliative care works. The context switch is too great.

  4. I am so saddened to hear of the case you describe. I agree that ICUs can be a very hard place to achieve improvements in palliative care, but they are nevertheless important for the reasons you say. That you for sharing your thoughts and experience.

    • Thanks Irene,
      The problem in this particular case was exacerbated by the age old notion some doctors have of allowing politics to blind them to gross signs of improvement in a patient that even a HCA could not miss let alone an ICU consultant. The politics? The worst kind, protect an incompetent haematologist. Cost to the NHS? Huge. Cost to the nurse who actually killed the patient? Difficult to say. Damage to the culture within the ICU? Enormous.

      The entire truth about palliative care is it all a little simpler for all if it is never used incorrectly e.g. Holland. If the NHS allows the successor of the LCP to be deliberately misinterpreted as was the LCP, we in the UK will end up with a fifth rate service costing World Class rates. It actually saves a lot less than nothing to have people die to a timetable. The reason for this deserves another comment to explain why the economics behind the woolly and simplistic thinking which is endemic unfortunately, is badly flawed, so thanks for your understanding. I will respond if you are interested in my view.

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