Where Patients Die Matters

I was thrilled to see this article in the September 15 issue of The Denver Post–reprinted from the Los Angeles Times. http://articles.latimes.com/2010/sep/14/news/la-heb-hospital-death-20100914

For those of us who are familiar with the tender mercies provided by hospice care, the fact that “cancer patients who died at home with hospice services had a better quality of life in their final days” is no surprise. But for countless thousands (perhaps millions) of terminal patients and their families, the difference that hospice can make at the end of life remains a secret.

One thing I did not know is that, according to the study quoted from the Journal of Clinical Oncology, “caregivers of cancer patients who die in an ICU are at heightened risk for post-traumatic stress disorder.” As a former caregiver, this makes perfect sense to me. Losing your loved one is hard enough. But the idea of seeing them trying to make their transition while hooked up to myriad machines that are trying to keep them alive is completely unnatural. In my view, even cruel.

Because we had hospice care for Stephen, he died at home in peace. I was right next to him in our bed. And I was also at peace. I knew that I could call hospice, no matter what happened in his final hours. And he knew that once he slipped into a coma (which he did), he could continue to do the soul work involved in dying without being disturbed or interrupted.

Studies are by nature technical and statistical. The numbers cannot account for the intangibles that go into creating lives of meaning. So the authors of the study conducted at the Dana-Farber Cancer Institute in Boston cannot entirely account for the differences they found between higher quality of life for hospice patients and their hospitalized counterparts. The article suggests it might have something to do with the “different goals of an ICU and hospice.”

This is, indeed, the case–in my experience. Hospitals are focused on keeping bodies alive at all cost (and the consequent costs are extremely high). Hospice care is focused on patient comfort and caregiver support. Hospitalized patients are seen first as a collection of symptoms to be managed while hospice patients are seen first as human beings with mental, emotional, and spiritual needs that often trump physical needs–once their pain is controlled.

So I am greatly heartened to see this study being published. It is my deep desire that more and more people understand that they have choices for how they end their days on this earth. And that hospice care is in so many, many cases the most compassionate approach–for both patients and those who love and care for them.