I recently went to a wonderful birthday party. A good friend was celebrating both a milestone birthday and the fact that she is cancer free for over 2 years now. Partying with her and her family reminded me that she’s a great example of a palliative care story with the kind of happy ending we don’t often hear about: the one where the patient recovers and lives.
She had just had twins when she was diagnosed with an aggressive form of lymphoma. She went into remission after standard treatment, but then the lymphoma came back. The prognosis wasn’t encouraging but no one, least of all I, was thinking hospice was the right next step. This was a mother of 3 small children who had every reason to want to try to live. She agreed to a stem cell transplant and was hospitalized for the treatment. While there, she had very bad nausea and was losing weight, something she didn’t need. She was also in both physical and emotional pain. At my suggestion, she asked for a palliative care referral. When her physicians heard that, they were confused because “she wasn’t dying.” She agreed, and told them that she needed help to manage symptoms so that she could tolerate the treatment to help her live. A wonderful palliative care nurse saw her and got her symptoms under control. She also had the chaplain visit and arranged for her to vote by absentee ballot. My friend survived the stem cell transplant and is now chasing her children around and being a wife, mother, and member of her community.
The point of this story is that she’s an example of what we mean when we say that palliative care is appropriate at any stage of an illness and concurrent with curative treatment. Perhaps if we told more stories like hers, where there’s this kind of happy ending, rather than just stories about good deaths, people would be inclined to think of palliative care more favorably and to ask for it sooner. She’s living proof!
CAPC has just released a “report card”reflecting on the state of palliative care across the nation. THe report was created for the first time in 2008, and apparently as a nation since then we went from a C to a B. What it means in reality? I guess more quality palliative care programs across the nation.
Seven states and DC and got an A, more than half of the states are ranked B, and there are two that got an F. One can download the full report here or just look at specific state statistics.