Sick To Death > Chapter 2 > Anticipating Challenges

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Anticipating Challenges

Advance care planning is the way to ensure that the patient and family get to shape many details of the care plan, if they want to do so (Teno and Lynn 1996). The person who wants to die without an attempt at resuscitation needs to have the opportunity to say so. Some patients want to control who is in the room - both to include and to exclude. Having the right medications to treat serious symptoms may require storing them at the home and ensuring that someone has the skills to give them when needed. Again, advance care planning can allow choices over many things, both the medical treatment issues and the small details of importance to the patient.

The health-care system has certain routine responses to serious complications - resuscitation for circulatory cessation, transfusion for bleeding, or antibiotics for pneumonia, for example. Most of these are, quite reasonably, aimed at restoring or preserving health. But these can be difficult or burdensome interventions, and seriously ill persons nearing the end of life often do not want and will not benefit from them. Avoiding them requires explicit planning in advance.

Thus, advance care planning is mainly thinking ahead: considering the likely course and the unlikely, but potentially important, complications; and making plans for how to live as well as one can through what is coming. It is not merely a statement as to who should make decisions when the patient cannot, nor is it just a decision about resuscitation or hospitalization, though those are important. Fundamentally, advance care planning requires thinkingabout the future and putting in place the specific arrangements that will improve the likelihood that the patient and family will live out the last phase of life in the way that is meaningful to them. Obviously, advance care planning is an essential part of good care for serious chronic illness.