General introduction 17 • terminal phase, which is multi-dimensional care in the dying phase including bereavement care.45 Fig. 2. A trajectory model of care. From Lynn, J. and D. M. Adamson (2003). Living Well at the End of Life. Adapting Health Care to Serious Chronic Illness in Old Age. RAND Health. Santa Monica, United States of America: 18, Figure 2. The Older “Transition” Model of Care Versus a “Trajectory” Model.46 This model provides an easy way to understand how a treatment trajectory gradually becomes more focused on supportive care and eventually on bereavement care. The model can be applied to many life-shortening conditions. There are however some exemptions. For instance, illness trajectories of patients with a haematological malignancy are more complex and the timing to assess palliative care needs can be difficult.47 Haematological malignancies follow unpredictable trajectories which require very toxic curative treatments. In other words, patients not only have a high risk to die of their illness, but also of treatment. Along the illness trajectory, treatment is often with curative until the last days before death.48 3.2 Recognition of trigger moments Illness trajectories and functional decline are accompanied with healthcare transitions, such as increased healthcare utilization and unplanned hospitalisations.49, 50 Such trigger moments can be used to identify patients with palliative care needs.51, 52 Trigger moments occur for example when cancer becomes incurable, or when patients and family receive bad news. Palliative crises can occur as trigger moments as well: patients suffer from uncontrollable symptoms or acute severe symptoms; family caregivers are exhausted; and local healthcare services provide insufficient palliative care. Trigger moments are not only crucial for assessing and treating the current problem but can also indicate that a patient is deteriorating. An emergency department visit is such a trigger.53 The top five reasons patients in the palliative phase visited the emergency department in Ontario in 20022005 were abdominal pain, lung cancer, pneumonia, dyspnoea and malaise and fatigue.54 Grudzen et al.’s randomised controlled trial in 136 patients with advanced cancer who 1
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