Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age

Abstract

PrefaceMost older Americans now face chronic illness and disability in the final years of life. These final years can prove painful and difficult for sick and disabled elderly people, who may have difficulty finding care to meet their needs. This period is often stressful and expensive for families. As currently configured, health care and community services simply are not organized to meet the needs of the large and growing number of people facing a long period of progressive illness and disability before death.This white paper synthesizes a growing body of research on the issue of chronic illness in the last phase of life. It describes the demographic and cost components of the problem, examines gaps in the current health care system, explores some reform measures that are addressing urgent needs, and outlines a vision for adapting the health care system to confront the new reality. This work has relied heavily upon grant support from The Archstone Foundation, the Milbank Memorial Fund, and The Washington Home and Community Hospices.RAND is a nonprofit institution that helps improve policy and decisionmaking through research and analysis. RAND Health furthers this mission by working to improve health and health care systems and advance understanding of how the organization and financing of care affect costs, quality, and access.

Patterns of health care use and expenditure during the last 6 months of life in Belgium: Differences between age categories in cancer and non-cancer patients

“…The results confirm that cancer patients have more access to palliative care [17], which is not surprising in view of their typical trajectory. Yet, from the widespread belief that palliative care should not be restricted to the terminal phase [19,30], additional efforts are needed to increase accessibility of palliative care. Older cancer patients less likely receive a palliative home care allowance as compared to young cancer patients.…”

“…It has been recognised that older people have complex problems at the end-of-life. They are often affected by chronic diseases, of which the course is difficult to predict, and death may in fact be sudden during a crisis [18,19].…”

End of life in intensive care: Is transfer home an alternative?

“…Whilst studies have identified that individuals do not want to be seen to be diminished by their long term conditions (Telford et al, 2006), it remains difficult for such patients not to be compliant to treatment despite little guarantee of the success of medical options (Horner et al, 2000). With the slow gradual decline towards the end of life that those with a long term illness will experience, as opposed to the rapid decline into end of life for those with cancer (Lynn and Adamson, 2011), the transition from an illness to an end of life trajectory is often difficult to predict, for people such as Les. Indeed this is endorsed by Tobler et al (2011) who demonstrate that the majority of patients dying from congenital heart disease receive aggressive treatment until their death: only a minority of patients receive documented end of life discussions.…”

Life sustaining treatment at end-of-life in Japan: Do the perspectives of the general public reflect those of the bereaved of patients who had died in hospitals?

“…The first condition will henceforth be referred to as "cancer", the second as "frail", in order to concisely convey their difference. These two conditions correspond to two of the three trajectories of end-of-life proposed by Lynn and Adamson [20]. If the respondent replied that he or she did not, or rather would not, want LST, he or she was asked to select one from the following options.…”