Care and compassion are not a traits a health care institution can manifest. A hospital can, if its management chooses, provide a supportive environment for the people it employs (staff), and a compassionate environment may foster compassion (that is, caring). But, by and large, today’s hospitals do not foster caring. This may be denied by the institutions, staff, and doctors (who, for the most part, are independent of the hospitals we encounter them in). The reasons vary:
- providers equate treatment with care; lay people know, and experience, the difference (although no one talks about the language gap)
- caring takes time and enough people to spend their time with us—neither seems to be present (it costs…)
- institutions invariably place adherence to internal policy above individually tailored service (although they will say that the policies make for good service, or deny the inherent conflict outright).
In any case, care or no care, treatment must be overseen by you—your patient-family’s representative (and presumably your loved one’s legal proxy). Statistics are well-known: errors while hospitalized are one of America’s major causes of injury and death. This would not be tolerated in any other environment, and unless you’ve experienced it personally you may not want to believe it’s true.
In helping ourselves we can help providers, staff and doctors alike. They don’t like the constraints under which they labor any more than we do. In fact, medicine has a name for what happens to us when their system breaks down: discontinuity of care (some providers propose a name for their own pain when things go critically wrong: Second Victim—a phrase I think ought rightfully be reserved for family members).
Treatment providers know all this. That’s why hospitals tell us to advocate for hospitalized loved ones, and to bring an advocate with us when we’re hospitalized. But they don’t tell us why (too scary), nor really tell us how (too complicated). This site’s articles and resources will provide you knowledge and insight so that you can engage effectively during medical crises.
We advocate to minimize and mitigate risk…to prevent mistakes and poor treatment choices from happening, and to quickly neutralize their negative impact when they do. In my experience, success requires 24/7 presence, diligence, record-keeping, and—to be blunt—doing what feels like back-seat driving. All while keeping in mind your loved one’s wishes, to ensure that what you do, and get others to do, reflects your loved one’s wishes and not just your own.
Patient safety, and especially patient-centered treatment, become especially poignant near or at end of life. Here, advocacy takes on a broader meaning, for our likelihood of dying peacefully (we all say we want to) requires personal action that very few patient-families understand, discuss, prepare for, or take. In this realm we citizens are completely unfair to providers, who try to shoulder a burden that is not really theirs to bear. Even so, in my worldview, providers are at least 50.1% responsible for helping guide us when we end up in the crucible of a terminal hospitalization for the simple reason that they’ve seen death unfold hundreds of times to our once or twice.
When I was a child my mother gave me a red bell like this one—a Melodee Bell—to ring for her when I was sick in bed. She provided what I now call Mom and Apple Pie Care. She taught me what care is made of. I learned that lesson and provided similar care to my daughter. We all know what care is. The space between knowing what care is, the institutional promise of care, and our experiences while hospitalized is the place where we must act as advocates. Axiom Action will help you learn to function effectively there.