Submission to the Grand Challenges Initiative in Social Work, 2013
November 25, 2013
Dying and death are stigmatized in society today: people avoid discussing their preferred approaches to dying and the use or limits of medical care. If people enter a prolonged dying trajectory (as opposed to a sudden death experience) without discussing their views, families are often confronted with a great deal of confusion and pain as they try to decide on the best approach or the choice their loved one might have made. This has policy implications since a clear decision (especially for hospice or palliation) can lead to reduced medical costs as well as enhanced quality of life at life’s end.
The challenge can be solved if we teach our students, educate our clients, and prepare society at large to work through fear of dying. Further, the dying time holds profound potential for developmental growth and familial healing as needed contingent on the dynamic needs/stage/capability of the family. Since people are now living longer, more likely to have chronic illness, they are dying at older ages. This specific challenge thus affects older adults to the largest extent, although it will affect people of all ages. Literature is expanding in the area of advance care planning, but much remains to be achieved.
Currently there is a problem of late referrals to hospice care. At least 10% are referred with less than 24 hours to live and the current median use is about 20 days (NHCPO, 2012). Hospice care has been shown to require lower funding in the last year or so of life when care costs of older people are especially high. Progress in holding these conversations could be measured by documented conversations, percentages of advance care directives completed, and assessing percentages of ill older people entering palliative or hospice care before dying relative to other mortality and location-of-death figures. Increase in service usage by ethnic minorities who are today less likely to use these forms of care because of a history of distrust of medical systems (as well as other reasons) would be another important measure.
This challenge will require the collaboration of all disciplines–especially social work, medicine, and nursing who address the needs of chronically and acutely ill people at any life stage–but others as well. Interdisciplinary collaboration will be required to normalize and recommend these conversations as well as learn how to approach them in sensitive caring ways.
Because death has been largely medicalized and removed from home settings in the last century and this one (Aries, 1981), a great deal of stigma and fear surrounds this topic. It is not well-integrated into our lives. We celebrate births, but we do little to prepare or reflect on our deaths. Instead, the avoidance of what is imminent for us all–a natural part of the human condition–causes additional pain and suffering. The stigma surrounding death as well as aging is what requires a strong need for innovation on many levels. It can only be resolved by consistent concerted efforts across policy, practice, and research. Social work with its unique understanding of the person and the environment is well-prepared to guide the resolution of this key challenge.