Sarah Nouri's guest appearances

Sarah Nouri

GeriPal

OwlTail

Hillary Lum

LJ Van Scoy

Our guests today present an important rejoinder to the argument that we should refocus away from advance care planning (ACP).  Sarah Nouri, Hillary Lum, and LJ Van Scoy argue that diverse communities are asking for ACP.  Sarah Nouri gives an example from her work in the LGBTQ+ community of a trans woman who was buried as a man because existing laws/rules did not protect her wishes.  Others cited the call from communities to meet them where they are - be they senior centers, Black-owned businesses, or churches (we have a podcast planned in the fall with Fayron Epps and Karen Moss on the church setting).  It does seem that if communities, particularly historically marginalized communities, are interested in ACP, that fact should carry some weight in how resources are allocated to research and health care financing.  We additionally have a debate/discussion about which outcomes of ACP matter most, including  Terri Fried’s commentary in JAGS that caregiver outcomes matter more than goal concordant care (the “holy grail”), completion of advance directives, or changes in health care services use.  Did the caregiver feel heard and understood?  Did they have PTSD? Complicated grief? Depression?  Group visits are one way of reaching diverse communities to which advance care planning has not traditionally been targeted.  In a group visit there is a social norming effect - “if my neighbor is doing it, perhaps I should be doing it to?”  Please tune in to hear more, and listen to the whistle of the “Friendship train!”   -@AlexSmithMD    Links: Community Based Participatory Research and ACP in Latinx communities: https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/jgs.18236 Community based ACP in the Black Community: https://link.springer.com/article/10.1007/s11606-023-08134-2 ACP in the Chinese American Community: https://www.sciencedirect.com/science/article/pii/S0885392423000982 Group ACP in primary care: https://www.annfammed.org/content/14/2/125.short and  https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/jgs.16694 Project Talk Website: www.ProjectTalkTrial.org Project Talk Trial Protocol Paper: https://journals.sagepub.com/doi/pdf/10.1177/1049909116656353 Hello Article (including Black churches): https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2765685 Communication Quality Analysis: https://www.tandfonline.com/doi/abs/10.1080/19312458.2022.2099819 Conceptualizing Surrogate Decision Making: https://www.tandfonline.com/doi/abs/10.1080/19312458.2022.2099819 What counts as a surrogate decision: https://journals.sagepub.com/doi/abs/10.1177/10499091231168976   For e-training modules on ACP group visits:  https://cuelearning.org Click on the Register link (upper right corner). A pop-up box will appear and enter your email address and set up your password. For Registration Code, enter: ENACT (not case sensitive). The ACP Group visit implementation guide is available here: www.coloradocareplanning.org. Scroll down to “Innovations in ACP page”

Our guests today present an important rejoinder to the argument that we should refocus away from advance care planning (ACP).  Sarah Nouri, Hillary Lum, and LJ Van Scoy argue that diverse communities are asking for ACP.  Sarah Nouri gives an example from her work in the LGBTQ+ community of a trans woman who was buried as a man because existing laws/rules did not protect her wishes.  Others cited the call from communities to meet them where they are - be they senior centers, Black-owned businesses, or churches (we have a podcast planned in the fall with Fayron Epps and Karen Moss on the church setting).  It does seem that if communities, particularly historically marginalized communities, are interested in ACP, that fact should carry some weight in how resources are allocated to research and health care financing.  We additionally have a debate/discussion about which outcomes of ACP matter most, including <a href="https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.18000" rel="nofollow" target="_blank"> Terri Fried’s commentary in JAGS</a> that caregiver outcomes matter more than goal concordant care (the “holy grail”), completion of advance directives, or changes in health care services use.  Did the caregiver feel heard and understood?  Did they have PTSD? Complicated grief? Depression?  Group visits are one way of reaching diverse communities to which advance care planning has not traditionally been targeted.  In a group visit there is a social norming effect - “if my neighbor is doing it, perhaps I should be doing it to?”  Please tune in to hear more, and listen to the whistle of the “<a href="https://www.youtube.com/watch?v=Lvj5df224C8" rel="nofollow" target="_blank">Friendship train</a>!”   -@AlexSmithMD  Links: Community Based Participatory Research and ACP in Latinx communities: <a href="https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/jgs.18236" rel="nofollow" target="_blank">https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/jgs.18236</a> Community based ACP in the Black Community: <a href="https://link.springer.com/article/10.1007/s11606-023-08134-2" rel="nofollow" target="_blank">https://link.springer.com/article/10.1007/s11606-023-08134-2</a> ACP in the Chinese American Community: <a href="https://www.sciencedirect.com/science/article/pii/S0885392423000982" rel="nofollow" target="_blank">https://www.sciencedirect.com/science/article/pii/S0885392423000982</a> Group ACP in primary care: <a href="https://www.annfammed.org/content/14/2/125.short" rel="nofollow" target="_blank">https://www.annfammed.org/content/14/2/125.short</a> and <a href="https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/jgs.16694" rel="nofollow" target="_blank"> https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/jgs.16694</a> Project Talk Website: <a href="https://urldefense.com/v3/__http://www.ProjectTalkTrial.org__;!!LQC6Cpwp!q7SLvNkXeV2xnSd46argMr7X9uuzrMohOAkotrehlTjZyCkhD8hGjGjjBlZm1_nDXv-i55rUPWdGbzZemaR7ClLEfhwt_7I1FAXs$" rel="nofollow" target="_blank">www.ProjectTalkTrial.org</a> Project Talk Trial Protocol Paper: <a href="https://urldefense.com/v3/__https://journals.sagepub.com/doi/pdf/10.1177/1049909116656353__;!!LQC6Cpwp!q7SLvNkXeV2xnSd46argMr7X9uuzrMohOAkotrehlTjZyCkhD8hGjGjjBlZm1_nDXv-i55rUPWdGbzZemaR7ClLEfhwt_9vaanqY$" rel="nofollow" target="_blank">https://journals.sagepub.com/doi/pdf/10.1177/1049909116656353</a> Hello Article (including Black churches): <a href="https://urldefense.com/v3/__https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2765685__;!!LQC6Cpwp!q7SLvNkXeV2xnSd46argMr7X9uuzrMohOAkotrehlTjZyCkhD8hGjGjjBlZm1_nDXv-i55rUPWdGbzZemaR7ClLEfhwt_0FnJyba$" rel="nofollow" target="_blank">https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2765685</a> Communication Quality Analysis: <a href="https://urldefense.com/v3/__https://www.tandfonline.com/doi/abs/10.1080/19312458.2022.2099819__;!!LQC6Cpwp!q7SLvNkXeV2xnSd46argMr7X9uuzrMohOAkotrehlTjZyCkhD8hGjGjjBlZm1_nDXv-i55rUPWdGbzZemaR7ClLEfhwt_wopI03Z$" rel="nofollow" target="_blank">https://www.tandfonline.com/doi/abs/10.1080/19312458.2022.2099819</a> Conceptualizing Surrogate Decision Making: <a href="https://urldefense.com/v3/__https://www.tandfonline.com/doi/abs/10.1080/19312458.2022.2099819__;!!LQC6Cpwp!q7SLvNkXeV2xnSd46argMr7X9uuzrMohOAkotrehlTjZyCkhD8hGjGjjBlZm1_nDXv-i55rUPWdGbzZemaR7ClLEfhwt_wopI03Z$" rel="nofollow" target="_blank">https://www.tandfonline.com/doi/abs/10.1080/19312458.2022.2099819</a> What counts as a surrogate decision: <a href="https://urldefense.com/v3/__https://journals.sagepub.com/doi/abs/10.1177/10499091231168976__;!!LQC6Cpwp!q7SLvNkXeV2xnSd46argMr7X9uuzrMohOAkotrehlTjZyCkhD8hGjGjjBlZm1_nDXv-i55rUPWdGbzZemaR7ClLEfhwt__s0Zf1J$" rel="nofollow" target="_blank">https://journals.sagepub.com/doi/abs/10.1177/10499091231168976</a> For e-training modules on ACP group visits: <a href="https://urldefense.com/v3/__https://cuelearning.org__;!!LQC6Cpwp!p7zzog4YROKpT6c9r_Cy_Zvj959d-hxm2Z_2gaLDXtmifXcXgUYi5lDcMRzxx30yQoaDyvef4C4Mcnx92kWO7WG3lSnzcExUeg$" rel="nofollow" target="_blank"> https://cuelearning.org</a> Click on the Register link (upper right corner). A pop-up box will appear and enter your email address and set up your password. For Registration Code, enter: ENACT (not case sensitive). The ACP Group visit implementation guide is available here: <a href="https://urldefense.com/v3/__http://www.coloradocareplanning.org__;!!LQC6Cpwp!p7zzog4YROKpT6c9r_Cy_Zvj959d-hxm2Z_2gaLDXtmifXcXgUYi5lDcMRzxx30yQoaDyvef4C4Mcnx92kWO7WG3lSkvKgVLGA$" rel="nofollow" target="_blank">www.coloradocareplanning.org</a>. Scroll down to “Innovations in ACP page”