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  1. Dr Sadie Hutson is PI on a recently completed mixed methods study of EOL and ACP needs of people who are living with HIV/AIDS in Appalachia. We found that nearly all suffer stigma (HIV itself is stigmatized)–there are often multiple sources, as in Crenshaw’s Intersectionality framework. If pts are LGBTQA+ and POC,and female, and low-income__this is a devastating social burden. Often there is family ejection, or so much secrecy in the face of that potential rejection, that ACP with dialogue among family members s a minefield. We found that while most would like to die at home, in rural Appalachian TN and AL, the GIS data showed EOL services needed would not be in range for either pt/caregiver to travel. In addition, while it is true HIV need not be a terminal diagnosis, these persons are immunocompromised, have medications with serious side effects, report mental health needs, and develop other chronic health conditions. Social support networks are often limited to one or two trusted others. So this topic, and what happens after this election has very real consequences for people who will need these services. We also found, anecdotally, that many clinicians discourage talk of EOL planning because they fear it will decrease hope in the HIV+ person. This is unfortunate, and nurses should be at the forefront of EOL planning, especially if the ACA goes by the wayside.

    December 6, 2016
  2. Suzanne Sullivan #

    Thank you so much for your comments. Your message resonates with me tremendously as I have worked closely with the HIV+ population and LGBTQA+ population in the rural Florida Keys for many years, first as a CNA and later as an RN. Those experiences have informed my desire to conduct EOL and ACP research as my personal experiences echo the observations from your study. I wholeheartedly agree that nurses, especially community-health nurses, are uniquely positioned to develop a trusting relationship that could support ACP and make a real difference in improving their rates.

    December 12, 2016
  3. lisanem57 #

    This article is scary to me, especially the question #1. “Will history repeat itself if the ACA is repealed and will we go back to the prior health delivery system in the United States or will this be an opportunity to revamp the ACA into a model that meets the needs of all Americans—especially those at the EOL?” History repeating itself to me is; no longer having the pre-existing condition clause, no longer having well visits paid for and having a company of people who are not medically trained decide medical and make end of life decisions. I remember the days when if you had a chronic illness that was costly insurers would refuse you and if they took you there was a cap on how much they would pay. I just saw Kellyann Conway on TV this morning talking about the “great” (her words not mine) plan Trump has that includes a waiver system. Once you’re out of waivers, you’re out of insurance.

    January 18, 2017

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