Reliable comfort and meaningfulness

To live well in the time left to them, patients with fatal chronic conditions need confidence that their healthcare system ensures excellent medical diagnosis and treatment, prevention of overwhelming symptoms, continuity and comprehensiveness of care, advance care planning, patient centred decisions, ands support for carers.1 Hospices and palliative care have improved these dimensions of quality for people dying from cancer. Applying those insights to other fatal chronic conditions could greatly improve the last part of life, although the endeavour entails substantial challenges. End of life care for elderly people will have to last for a long time: being disabled enough to need daily help now continues for an average of more than two years before death. Patients with non-malignant, long term illness are older and frailer than patients with cancer (as are their carers). Transfers between hospitals, nursing homes, and home care often engender delirium, depression, falls, treatment errors, and pressure ulcers, in addition to the common hospice problems of pain and loss. Entities that are often unfamiliar to hospices—such as social insurance programmes for poor people, long term care facilities, and disability transportation—will need to be partners in care.

How can we ensure reliable services for everyone in the last phase of life? Systematic quality improvement and policy reforms will offer reliable and efficient strategies if they focus on the three common patient trajectories: short decline typical of cancers; intermittent exacerbations and sudden death typical of organ system failures; and the slow dwindling course typical of frailty.

For gains to be achieved and sustained, quality improvement requires clear goals, appropriate teams, ways to monitor progress, sequential testing of improvements, and the institutionalisation of improved processes.2 Local quality improvement has a track record of success in correcting some shortcomings of ordinary care.3 4 These include improving pain prevention and treatment (such as by routinely responding at a patient’s home within a time period determined by the patient or a family member), developing and implementing advance care plans (deciding whether to attempt resuscitation, for example), and preventing and healing pressure ulcers (one quality improvement programme reduced the incidence of full thickness lesions by 69%5). Quality improvement projects can reduce overtreatment near the end of life, improve prognostication and counselling by providing automatic feedback to clinicians, and implement shared accountability and effective drug reconciliation throughout changes of care settings.3 6

Sustainable excellence requires supportive social policies. Practitioners working in trustworthy arrangements for delivering care must make a living. But powerful economic interests and social forces now encourage the overselling to patients and families of treatments with little chance of success. Citizens and clinicians must encourage political leaders to champion more appropriate policies, such as allocating healthcare payments to reward continuity and comprehensive primary care1 7 and ensuring an adequate income in retirement for family members who are carers.1

Such reforms will be more efficient when they set out to match eligibility and service patterns to the three dominant patterns in the last phase of life.1 8If palliative and hospice care are available only to those who die in a predictable way in a short time, most people will never qualify, because their timing of death will stay uncertain until very close to the end of life.9 A short period of hospice care does meet the needs of many cancer patients, but people with heart and lung failure are better served by having a much longer period of support for self care and rapid response to help people at home in times of crises. In contrast, people with dementia or who are frail are often best served by having many years of support to carers in the family. Delivery systems that are tailored to the usual needs of these groups would enable clinicians to customise care plans to the preferences of individual patients and their families.8

The combination of specific innovations from quality improvement, encouragement in the form of payment and regulatory policy, and services tailored to particular groups of patients is a powerful package for reform. In various forms, such a strategy is being pursued in many places: the United Kingdom, Saskatchewan in Canada, and Sweden, and in the United States by Kaiser Permanente, the Veterans Affairs Health System, and Medicare’s Quality Improvement Organizations in each state.

Every clinical team can use quality improvement to adapt its own care system to the needs of patients with fatal illnesses. For example, doctors can shoulder the burden of helping patients and families come to a realistic view of the outlook and to collaborate in making plans. Claiming to be sustaining hope, doctors often offer improbable treatment plans, falsely implying that all will be well if the patient and family go along with them. Instead, an honest appraisal of the situation, the likely course of the illness, and the treatment alternatives would allow the patient, family, and clinicians to negotiate the priorities among various goals, the preferred strategy, and a timeframe for reconsideration.

The ageing of populations will greatly increase the number of sick and dying older people, while smaller families and reduced retirement security will shrink the number of available carers in the family. The coming crisis is obvious. Policy makers and practitioners must learn to support family carers, and local quality improvement and innovation in governmental policy are the right prescriptions.

The dying patient’s clinical care team must provide highly skilled diagnosis and treatment. Doctors must be able to promise to prevent pain and dyspnoea near death, for example. Specialist palliative care is well established in many countries, but palliative care skills among those professionals who serve most patients—long term care nurses, home care teams, generalist physicians, and specialist physicians—lag far behind.