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Good afternoon, my name is Sandra Lombardi; I'm going to speak on palliative care and pulmonary arterial hypertension today. A lot of people don't really understand what palliative care is, they relate to hospice, so we're hopefully going to change that a little bit today. Palliative care is about pain and symptom management, social and spiritual assessment, identification of all patient goals and their care givers, and a transition of care from the hospital.
We know with palliative care patients have better quality of life, less depression, and in cancer we know that they end up with a little bit less aggressive cancer care near the end of life, and they live on an average of 2.7 months longer. Palliative care is for any diagnosis at any stage and at any age. This is really important because people believe with palliative care patients have to go off their more advanced therapies like IV EPO which is not true, and they can also stay on transplant lists. That's really a big difference palliative care and hospice; you can stay on your medication as well as getting transplanted or at be on the list.
Palliative care really can address the goals of care, and this is not just about the doctor, but how the family, the care givers, really want to manage and control their PAH. They assist in a psycho-social assessment and they take in consideration if they're children, if they're parents, aunts, uncles, they really look at the whole patient and their social setting, and really look at the needs of the care giver. Physicians attitudes towards palliative care and PAH, it's really backward, the majority of physicians report at maybe one palliative care consult in a year. 59% of them thought it was for end of life issues or active dying, a lot of people thought it was just like hospice, and the barrier seemed to be really out there and especially the cost and being able to discharge and how much home health they can get.
Patients often have no advanced care planning, so people die without ever having written out wills or who they want as their power of attorney, we really need to change that and palliative care they would make sure that happened. Palliative care is rarely involved with patients and discussions with their provider, and patients often have a misunderstanding about palliative care, i.e. they think it’s hospice and giving up. End of life experience for a cohort of PAH patients, if 100 patients were surveyed and we had 36 respond, 90% of the patients that we spoke with had, well we didn't speak with them, but 90% of these patients died from PAH and 67% died in the hospital, 83% of hospitals deaths were in the ICU.
Palliative care was rarely involved and patients had a high symptom burden. What we see with palliative care is that we could change this where patients could go home and maybe live a little bit longer, and have a much better ending to death.
We know palliative care is underutilized in PAH, numerous patients and physicians have misconceptions and perceptions about palliative care, and end of life issues are often not addressed in PAH patients.