What is the problem with the modern approach to end-of-life care? Why do modern end-of-life care institutions fail to deliver what’s expected of them?
The modern approach to end-of-life care relies on hospice and medical organizations. However, most end-of-life care institutions fail to provide patients with adequate autonomy and a sense of belonging.
Here’s why modern palliative care approaches are at odds with the things that add value at the end of life.
The Issues With Modern Palliative Care
According to Atul Gawande, the author of Being Mortal, nursing homes and hospitals are designed for narrow medical aims that are often at odds with the things palliative patients want, such as personal freedom and feeling connected to others. In these conditions, residents in these facilities feel bored, lonely, and depressed.
(Shortform note: Like Gawande, other experts observe that nursing homes present challenges to the mental well-being of residents. However, they suggest that residents and their loved ones can take steps to address these challenges. For instance, by staying physically active and playing thinking-intensive games, elderly residents may be able to stave off the physical and cognitive decline that leads to increased dependence.)
There have been alternative palliative care approaches that try to do a better job, but they’re not commonly practiced, writes Gawande. For example, the original assisted living model of care was designed in the 1980s to promote personal freedom. Residents could live in a comfortable space and direct their own lives—they could choose when they wanted to sleep, what they wanted to eat, and so on. Early studies of these facilities found that residents had improved cognitive and physical health, higher levels of satisfaction, and less depression than those who stayed in nursing homes.
Despite its success, this alternative assisted living model of care is rarely practiced today, though many institutions use the name. According to Keren Brown Wilson (the founder of the model), its failure exposes the ongoing difficulties we face in supporting the deeper needs of the elderly: Institutional priorities—regulations, profits, performance goals, and so on—aren’t aligned with the priorities of the residents.
For example, metrics like blood pressure stats and injury reports often become the gauge of an institution’s success. Since independent people (the elderly included) often minimize their health and safety in favor of doing things they like, such metrics discourage organizations from giving residents autonomy. For instance, an elderly person may not be allowed to go on a nature walk due to the risk of falling. Despite their good intentions, institutions often sacrifice personal freedom and a sense of meaning in support of health, safety, and the bottom line.