Some system elements are crucially important across all trajectories, including integrating care plans across settings, managing error-free transitions, problem solving, preventing complications and crises, ensuring comfort, planning ahead, and supporting loved ones in bereavement (figure).
For other elements, patients have different priorities in different trajectories, so reform could build around typical patient situations in each trajectory (table 1). For the first trajectory, excellence requires integrating hospice or similar palliative care support with disease oriented treatment, and responding quickly to changes in symptoms. For the second trajectory, rapidly responsive disease management and mobilising services to the home can reduce exacerbations, prevent hospital admissions, and maximise the quality of the end of life. For the third trajectory, supportive services are crucial, and often need to endure for many years; interventional medical and surgical treatments are much less central to good care.
Table 1 Elements of care important for patients coming to the end of life according to the 3 trajectories
Table 2 shows an example of a successful reform project for each of the trajectories; recent systematic reviews9,13
describe others. Programmes for the frail elderly in other countries, such as Canada,17
and comprehensive programmes for cancer and chronic disease (see box) also show promise for transforming care. These programmes are mostly small and experimental, and they are not yet integrated into the healthcare or payment system. They are also available only to a fraction of patients who would benefit because of restrictive eligibility criteria or unsustained funding.
Table 2 Examples of US programs oriented towards the 3 trajectories followed by patients at the end of life
Two examples of incorporating these concepts into healthcare systems outside the US are the gold standards framework in the UK and the use of “Esther” paradigmatic patients in health planning in Sweden. The Esther project built care arrangements and prioritised reforms by testing service quality and reliability against prototypical patients, starting with a fictitious but typical complex and frail person that the team called Esther and expanding the concept to consider “Esthers” with colon cancer, with heart failure, and with dementia. This proved to be a useful construct for focusing on each of the populations needing services.
The gold standards framework incorporates end of life tools and resources into primary care practices, and it has already been adopted by more than 2000 primary care practices (covering a quarter of the UK population).8
This programme asks doctors to identify patients using the “surprise” question, “Would you be surprised if this patient died within the next year?” Patients identified in this way then have different measures of quality than those needing routine acute and preventive care services. Good advance care planning, symptom relief, home support, and other services become priorities and targets for quality improvement for those on the framework registry, whether the patient dies next week or lives with serious illness for a few months or years.
Customising and reorganising care to match the needs, rhythms, and situations of these three trajectories offers a promising way to improve outcomes for patients sick enough to die. If a community can build a care system that reliably serves the prototypical patient in each trajectory in their area, then almost everyone is guaranteed good care in the last phase of life. That insight simplifies what can seem an overwhelming array of details and possibilities. Such a framework would give direction to planners and managers to organise services, payments, and quality measures. It would also provide a basis for training healthcare workers and planning facilities for this population. It might also help advocacy groups that normally focus on disease specific issues to work together to identify and meet the common needs and priorities of care givers. If a region could deliberate on priorities, set goals, demand excellence, and monitor progress for each trajectory, civic and healthcare leaders and professionals might create a reliable care system for this fragmented and inefficient part of the healthcare picture.