World-class end-of-life care
“Although talk about patient- centred care is ubiquitous in modern health care, one of the greatest challenges of turning the rhetoric into reality continues to be routinely engaging patients in decision making”. Barry MJ, N Engl J Med. 2012
With an ageing population, with increasingly complex health care needs, it is not surprising that improving end-of-life care has become a major issue for developed countries. Twenty percent of deaths in the USA occur in an ICU, or shortly after an ICU stay, and an increasing proportion of older Americans spend time in an ICU during the last month of life. In Australia 1/3 of patients in acute hospitals are in the last year of life.
It is clear that person-centred care and shared decision-making provides the best outcomes - family, patient, health professional, and economic - in the last year of life. We know this, but the gap between our knowledge and our practice is constantly highlighted in academic publications, government announcements, media, and personal stories. The evidence indicates that the medical profession is harming vast numbers of patients by neglecting patient-centred end-of-life care and providing non-beneficial, unwanted, and expensive interventions. Our excuse for not providing high-quality end-of-life care can no longer be lack of evidence, or appreciation of the role of palliative care at the end-of-life. Although talk about patient- centered care is ubiquitous in modern health care, one of the greatest challenges of turning the rhetoric into reality continues to be routinely engaging patients in decision making.
The benefits of improved end-of-life care have been clearly elucidated;
- Patients and family – reduction in non-beneficial interventions and suffering, improve quality of life in last year of life, in some cohorts improved survival, and improved psychological and emotional well being.
- Health professionals – improved satisfaction, reduced “burn-out”
- Hospitals – improved consumer satisfaction and experience, reduced costs
We have chosen to use the UK Gold Standard Framework Criteria to indetify patients with a life-limiting illness, ie at higher risk of dying in the next year.
GSF criteria can provide an idea of the trajectory of a patients disease over the subsequent months to year
End-of-life Care at UHG
Life-limiting illness can be defined using objective indicators such as the UK Gold Standard Framework (GSF), and the Supportive and Palliative Care Indicators Tool (SPICT). The goal of these indicators is to aid the identification of patients in or approaching the last year of life, to aid the delivery of patient-centred care. Overall patients can be classified into a clinical trajectory group of cancer, organ system failure, frailty/comorbidity/dementia, or no LLI. These classifications have been tested and used extensively in community and hospital based settings.
Over the last 5 years we have collected data on over 2000 patients in UHG, looking at trajectory of survival, and evidence of discussions about care, for patients with and without life limiting illness (LLI).
We have learnt;
- At least a third of patients in UHG, or referred to ICU, have a life limiting illness
- The clinical trajectories of cancer, frailty, or organ failure, reliably identify patients with a high one-year mortality. Patients without a LLI have excellent outcomes.
- Less than half of patients with a LLI return to independent living
- Goals of care are identified in only 34% of patient with a LLI while in hospital
The i-validate pilot study
In August 2015 18 ICU registrars, residents, and liaison nurses undertook the first 2-day i-validate training. An audit of patients with a LLI referred to ICU for the 4-month period before and after the training, was conducted.
In summary we found (Table 1,2);
· Patients with a life-limiting illness referred to ICU have a very high 90-day mortality (46.4%). This is higher than previous UHG audits, and may reflect the i-validate program has “tightened” the criteria for LLI through training and formal audit.
· Patients with a life-limiting illness lose independence after their acute illness, with only half of those living independently returning to this.
· The majority of patients with a LLI are referred to ICU within 48-hours of hospital admission. This supports the need for a EOL strategy that leads to patient-centred discussions occurring within 48 hours of admissions
· The i-validate intervention was associated with a significant reduction in MET calls.
· Concerns that EOL training may lead to reduced access to ICU or increased mortality are not supported. There was no significant change in either, with the only trend towards the opposite,
· The intervention was associated with significant improvements in patient-centred care, with increases in documentation, assessment of competence and surrogates, and discussion of patients goals and values.
· The intervention appeared to be associated with improved resolution of ACPs and hospital GoC. In addition an increase in “non-defined” outcomes was reported. This may reflect the process of GoC was begun but not completed by 48-hours
· The General Medical ward LLI patients were included as a separate baseline group. The documentation of GoC (18.1%), and patients goals and values (4.3%)
These results are encouraging, and the are in keeping with recent literature examining the effect of improved communication for ICU patients with end-of-life needs
- Feb: ICU / Gen Med / ED registrar i-validate training in 3 x 2-day program
- Apr-Jun : Audit LLI patients on Gen Med ward and referred to ICU
- Aug: ICU / Gen Med / ED registrar and ICU MET/liaison/ANUM/in-charge nurse training
- Sep-Nov: Audit LLI patients on Gen Med ward and referred to ICU
- Build faculty through local training and accreditation
2017 - 2018
- Continue ICU / Gen Med / ED registrar training through year with regular program
- Expand to other medical specialty and surgical populations
The i-validate training program
To be added...