This is an excellent book and I’ve already sent a copy to a family member who is dealing with the very serious illness of her husband. I think all my “baby boomer” contemporaries need to read it. I’m tired of hearing people say it’s “too soon” to think about old age. “Later” has a way of arriving unannounced.
One of the best things about this book is that it critiques the use of “advanced directives” and acknowledges how often they are ignored. I think my father was resuscitated three times against orders, in the last two weeks of his life (1997). The eventual decision to switch to “comfort care” made his last hours peaceful.
Ms. Lee’s discussion of hospice care (at home or elsewhere) is severely at odds with my experience and perception. Her experience is both longer and broader than mine. Maybe at some time (decades ago?) and some place (not New Jersey), hospice provided the idyllic and thoughtful care she describes. But MY “here-and-now” observation suggests that hospice care has been completely commercialized and is just one more service provided by giant “health care” corporations determined to squeeze every possible dollar out of sick people and their insurance carriers.
I could write an extensive rant, but I won’t do it here. I do wish to note that two of my close friends, whose experience with hospice is more extensive than mine and who hold relevant professional credentials, agree with my opinion. One of these individuals is a licensed clinical social worker, the other a hospice chaplain.
Another substantive concern of mine is that Ms. Coombs seems to assume that one’s PCP (primary care physician) will be involved at all stages of illness and death. It seems to me that this is rapidly becoming less likely. Even among people with insurance, some simply don’t choose a PCP, relying on urgent care instead. My insurance company encourages use of urgent care for things I think of as primary care issues, so my number of PCP visits (and opportunities for discussion) may drop.
To complicate matters, I’m running through PCPs like Kleenex. Four in five years, not my choice… Is this happening everywhere? Within the primary care practice I use, even rather serious illness may be handled by a nurse practitioner. (I hope they show more longevity than physicians.) And, when one is hospitalized, visits by the PCP aren’t scheduled. I understand a specialist called a “hospitalist” is in charge. My observation (based on family experiences) is that often, NO ONE IS IN CHARGE.
Another good thing about this book is that it emphasizes values and spiritual considerations at the end of life.
Is this a depressing book? No! It’s full of practical suggestions, and offers hope that patients and their advocates can, with persistence, get more responsive care.