Well today, thanks to our colleagues at Pallimed, we hear from Dr. Pardi's husband, Robert. He very eloquently clears up some of the misconceptions about Dr. Pardi's decisions. He also does something that we as a community have difficulty with - describing to the general public the role of palliative care:
Please understand Palliative Care is about providing people the information they need (and avoiding false hope) so each and every one of us can make a decision about how we want to deal with a chronic disease. It is about quality in life and quality in death and tailoring a medical plan to achieve those goals.The Times piece and the Pallimed posts are well worth the read. As Rob Pardi states in his comment on Pallimed: "One thing my wife wanted was for people to learn, to discuss, to explore the concept of palliative care based on her illness and I am thankful so many of you are discussing." So, please join the discussion...
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3 comments:
I do wonder about how I might handle a terminal diagnosis at an early age... or at any age... I think that she died as she wanted and we should respect that. But we also shouldn't make everybody feel they have "to fight on" or "never give up". Maybe I don't want to have to endure what Dr. Pardi did. Does that make me weak? I guess the article made me a little angry to begin with, in that I thought, perhaps, her behavior was a rebuttal of my palliative care beliefs. However, on reflection, I think they aren't incompatible with palliative care.
I think we should be careful to say that one-size-fits-all doesn't work for older adults and neither does it work well for dying. I remember hearing a quote somewhere that goes something like, "One door leads into life, but many lead out." We all have to find our own way. With this in mind, I can be sad that Dr. Pardi had so little time but glad that she was in control of her life and her death. And that, that is okay.
I have had 2 cardiology and 1 oncology colleague refer me to this article "you should read this" as if it was going to be some surprise. I sent each of them her husband's response which I think is extremely powerful. The author of the NY Times article perpetuated many of the wrong assumptions that many of our colleagues have about palliative care.
Good patient-centered end-of-life care may entail a very aggressive course of treatment (often it doesn't, but that doesn't mean it shouldn't)
Thanks pallimed.
What an interesting story. It just reinforces what I've learned in my 40 yrs of nursing, that you cannot assume anything with our patients. We often come into their lives after they have almost lived them in their entirety. We cannot assume what they know or who they are, but be grateful to be in their lives to assist them near the end. There is always something to learn from each and every patient we meet, and that is what is so fascinating about this profession.
This story is also an amazing love story on the part of her husband. It left me amazed at the journey she chose to take, and his support of it.
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