How do we really live (and die) with serious illness? - Culture Change Part Two

Organizational culture is driven by the beliefs that are beneath the surface. It may be difficult to identify those beliefs because they are “just the way things are.” One example is how health care teams may think about the progression of serious illness and the approach of death.


You might consider that cancer has had a large influence, with the classic spiral of decline. This is of course not always true and people can have ups and downs and die suddenly from cancer without a visible trajectory but the stereotypical decline still keeps many of us thinking that we will see death coming. This core belief can cause both patients and health care teams to wait “until it is time” to involve hospice. Or to put off discussions of what lies ahead when symptoms may worsen and different choices have to be made about independence or care.

Alzheimer’s Dementia also follows the general slant of progressive decline. By contrast, vascular dementia can have fits and starts and drops and a checkerboard of deficits and retained functions.


Heart failure has “peaks and valleys” and a recent blog post by KevinMD.com discussed how sudden dramatic improvements can make patients feel life is going to go on and intense relapses resulting in hospitalization can result in “live” discharges from hospice.


If we want care teams to understand the role of palliative care and begin to work differently, we have to help them also give up the myth of the visible decline. In a lecture a couple decades ago, Joanne Lynn, MD, then Director for the Center for Improved Care of the Dying, at George Washington University made it clear that it is much more likely that people live for years with serious chronic illness and then suddenly die from a complication or precipitous collapse. Dr. Lynn now works to improve care for aging through an effort called Medicaring.


“MediCaring® is the exciting idea that Americans can learn to build reliable, effective, and efficient arrangements for services to support one another when we face the serious chronic conditions associated with very old age or the last years of life — and that such a care system will be quite different from the one we have now.”


If our care teams can let go of that idea of a visible decline, then they can begin to glimpse the power of palliative care to help people live better within the scenario of a serious illness. People a long way off from “qualifying” for hospice may have great need for and benefit from palliative care. If the care team can let go of the obvious and discernible decline, then the patient and family may be more likely to be engaged in goals of care conversations much earlier, and treatment choices can better reflect authentic, truly informed decisions based on values.

- Pat Justis