Diagnosing dying is relatively straightforward when symptoms are evident within the last few days or hours of death. Diagnosing the dying several months or weeks before the final event is more complex and doctors generally feel uncertain about prognosis. Failure to recognise chronically ill elderly patients who are naturally and normally dying delays appropriate decision-making on limitations of treatment, and the planning of comfort care. This leads to intensive treatments to prolong life and even to resuscitation attempts, which can cause more harm than good.
Communication of prognosis is important for patients and families in the preparedness for the end of life. Hospitals and GPs could be identifying the dying and getting involved in the referral or coordination of end-of-life care if available, in line with patients’ wishes to die peacefully. Alternative models of care outside acute hospitals are said to provide more appropriate care for the needs of terminal patients. These places include hospices, palliative care services, nursing homes or the patient's own home, surrounded by their loved ones, safe from painful, expensive, and ultimately futile interventions.
We have designed a screening tool to minimise the uncertainty of prediction of time of death to facilitate the initiation of honest conversations with dying patients and their caregivers about preferences for end-of-life treatment and more appropriate place of death outside acute hospitals. The Criteria for Screening and Triaging to Appropriate aLternative care is the subject of this program of research.
This program of research comprises several sub-projects:
1-Development of the CriSTAL tool: http://spcare.bmj.com/content/early/2014/12/09/bmjspcare-2014-000770.full
2-Retrospective validation (Australia, USA, The Netherlands)
a) To establish the ability of individual and combined parameters in the CriSTAL tool to predict death within the hospital admission among hospitalised patients
b) To determine the minimum number of variables and combination of variables that are sufficient to predict in-hospital death
c) To develop a weighted score and establish thresholds of certainty for clinicians diagnosing the dying elderly
==>Australian analysis published in Resuscitation journal:
a) Pre-existing factors for in-hospital death among older patients could be used to initiate end-of-life discussions rather than Rapid Response System calls. A retrospective study
===> Manuscript published in Resuscitation, 2016 http://www.resuscitationjournal.com/article/S0300-9572(16)30502-0/abstract
b) Estimating best timing for palliative care referral among hospital patients using RRS services
This retrospective study in Michigan, USA, has completed analysis for deceased and survivors.
==>Manuscript published in the International Journal Nursing Studies, 2017. http://www.sciencedirect.com/science/article/pii/S0020748917301694?via%3Dihub
==>Recently completed data collection in 3 Dutch hospitals. Analysis underway.
3-Prospective validation (Australia, Denmark, Ireland)
a) To determine the ability of the CriSTAL tool to predict death in the short-term [short-term defined as occurring within the hospital admission or up to 90 days post discharge]
b) To establish the ability of individual and combined parameters in the revised CriSTAL tool to predict In-hospital or post-discharge death within 90 days
c) To determine the overall minimum number of variables that are sufficient to predict in-hospital death for elderly patients presenting at the Emergency Department
d) To determine the self-reported quality of life of dying patients for up to 3 months after discharge
==>Recruitment completed of 2,842 participants with full follow-up.
Protocol manuscript released in 2018. https://www.sciencedirect.com/science/article/pii/S0167494318300347
Manuscripts on external validation in Ireland and Denmark soon to be submitted for publication.
OTHER RESEARCH PROJECTS IN THIS PROGRAM:
4- Examining impact of Advance Care Documentation on the end-of-life conversation
To examine whether the presence of an ACD or equivalent document would enhance clinicians’ involvement in initiating end-of-life discussions and the effectiveness of that involvement.
==>Manuscript published in Palliative Medicine 2016. http://pmj.sagepub.com/content/early/2016/03/07/0269216316637239.abstract
5-Public survey and consultation on of perceptions on end-of-life matters
==> Completed by 535 older members of the public. Manuscript to be submitted for publication in 2017.
6-Operationalising definitions of "inappropriate hospitalisation" and "non-beneficial treatments" near the end of life
To qualify and quantify the extent of inappropriate hospital admission at the end of life.
This project comprises a systematic literature review of the past two decades.
==>Manuscript published the European Journal of Internal Medicine, January 2017
To describe how clinicians and researchers define "non-beneficial treatments" and characterise its extent
This systematic review of two decades of literature presented meta-analysis and narrative on the subject
==> Manuscript published by International Journal for Quality in Healthcare in 2016 https://www.ncbi.nlm.nih.gov/pubmed/27353273
7- Measuring frailty and its impact on hospital outcomes
This prospective study has recruited 899 older participants and preliminary data analysis is currently being undertaken.
==> Conference paper published in Innovation in aging: https://academic.oup.com/innovateage/article/1/suppl_1/383/3898231
==>Manuscript underway to be submitted for publication in 2017
8- Telephone follow-up calls for older patients after hospital discharge
==>Manuscript published in the Age and Ageing journal in 2017 https://www.ncbi.nlm.nih.gov/labs/articles/28104599/
To identify barriers to initiating end-of-life conversations with patients, and design educational strategies for doctors and nurses diagnosing or treating dying patients.
==>Manuscript to be submitted for publication in 2018.
10- Decision support near the end of life
To identify components or strategies that assist older people in making management decisions near the end of life and identify areas for improvement
==> Manuscript published in 2017 https://www.ncbi.nlm.nih.gov/pubmed/27765378