About this episode
"Trying to give them as much autonomy as possible is really important. I always like to ask, 'Would you like to have a conversation? Do you think that you can handle a conversation about advance care planning?' Or 'What you would want someone to do for you if you're not able to speak for yourself?' They may say no, you know, and we have to respect that too," Mandi Zucker, LSW, CT, executive director of End of Life Choices New York in New York City, told Jaime Weimer, MSN, RN, AGCNS-BS, AOCNS®, manager of oncology nursing practice at ONS, during a discussion about end-of-life and advance care planning for adolescents and young adults with cancer. Music Credit: "Fireflies and Stardust" by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0 The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of NCPD by the American Nurses Credentialing Center's Commission on Accreditation. Learning outcome: Learners will report an increase in knowledge related to advance care planning with the adolescent and young adult cancer population. Episode Notes The NCPD activity for this episode has expired, but you can still earn NCPD through many other ONS Podcast episodes. Find a full list of opportunities . Oncology Nursing Podcast: Episode 9: How to Support Adolescent and Young Adult Patients With Cancer Episode 41: Advocating for Palliative Care and Hospice Education Episode 135: ELNEC Has Trained More Than One Million Nurses in End-of-Life Care Episode 251: Palliative Care Programs for Patients With Cancer Episode 287: Tools, Techniques, and Real-World Examples for Difficult Conversations in Cancer Care ONS book: Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum ONS courses: Facilitating Intentional Conversations—Parts 1 and 2 ONS Voice articles: How to Support Adolescents and Young Adults With Cancer at the End of Life Palliative Care Reduces Pain Trajectory in AYAs With Cancer Advance Care Planning: Nurse-Led Programs Increase Patient Conversations, Understanding, and—Ultimately—Documentation and Completion Rates Help Your Patients Prepare for the End From the Beginning ONS Huddle Cards: Palliative and Hospice Care National Hospice and Palliative Care Organization End of Life Choices New York Five Wishes Hello game The Death Deck/The EOL Deck The Conversation Project MyDirectives website and app VitalTalk website and app To discuss the information in this episode with other oncology nurses, visit the ONS Communities . To find resources for creating an ONS Podcast Club in your chapter or nursing community, visit the ONS Podcast Library . To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org . Highlights From This Episode "There's a saying in this field: It's never too early to have the conversation until it's too late. And like I said, when my children turned 18, we completed advance care plans with each of them. … Thankfully, they were, and they still are, healthy, and they didn't need an advance care plan imminently, but that's actually the perfect time to do it. So, we had this conversation when there was no emotionality really attached to it, and that's the best time." TS 7:31 "So, trying to give them as much autonomy as possible is really important. I always like to ask, 'Would you like to have a conversation? Do you think that you can handle a conversation about advance care planning?' Or 'What you would want someone to do for you if you're not able to speak for yourself?' They may say no, you know, and we have to respect that too." TS 11:28 "I like to use an acronym called WAIT, W-A-I-T—Why am I talking? And frequently, I talk because I'm nervous. I'm so anxious at such, you know? Exactly. Just because we have a little training in this doesn't make it an easy conversation to have. So I often notice that when I'm feeling anxious, I fill the room with words. So saying to yourself, 'Wait, why am I talking?' And if you realize 'I'm talking because I'm nervous; I'm uncomfortable with this conversation,' remind yourself to stop because a little silence is not bad. It actually gives the patient a little time to think about the question." TS 12:25 "Some young adults are very on top of this planning. You know, I think it's slow progress, but there has been some progress in that young adults are much more comfortable than a lot of us older people in having really difficult conversations. So we're the ones that are afraid to bring it up, but some of them are much more comfortable. So we have to remember that each of these people are individuals, and they may be very on top of this kind of planning or feel more comfortable having the conversations than we are. So it's important that we follow their lead and not make assumptions that because they're young, that they haven't thought about their own death." TS 16:44 "I think a great question to ask them is just like, 'What is your understanding of your diagnosis and prognosis?' Because they may have heard it already. They may not have absorbed all of the information. They may not be ready to talk about it. So asking them what's their understanding—if they say, 'I'm dying; I know that,' that makes the conversation a little bit easier, right?" TS 18:30 I actually think [it's] more important—the healthcare proxy—than the forms, because you're never going to be able to possibly come up with every single scenario that could happen. So you're not going to be able to document like, 'If this happens, do this,' for everything—but having a healthcare proxy who you've had conversations with about what your values are, not necessarily about every scenario." TS 25:19 "Whatever your value is, you want to be able to have that conversation with your healthcare proxy so they can speak—I'm not even going to say for you—I'm going to say as you , so they can really advocate for you as if they were you and making sure your values and wishes are respected." TS 25:54