Podcasts about Palliative care

At 25, Jace Yawnick was building a career in health and wellness sales, chasing growth, status, and the usual young adult fantasy of getting somewhere fast. Then his body stopped cooperating. Fatigue turned into chemotherapy. The diagnosis was primary mediastinal B cell non Hodgkin lymphoma, and the rest of his life split into before and after. Now in remission, he talks about cancer the way people actually live it, not the way nonprofits package it. He gets into survivorship, mental health, young adult isolation, and the deadening absurdity of prior authorization. One of the sharpest parts of the conversation lands on a simple American insult disguised as policy: treatment innovation means very little when insurance can still deny the scan, the drug, or the next step. Jace has seen that firsthand, including during routine monitoring after active treatment. This episode tracks what happens when a young cancer patient becomes a public voice and refuses to play mascot. It covers oncology, insurance, remission, advocacy, and the long mental hangover that follows survival. It also names the part too many institutions dodge: the system works great right up until it doesn't, and when it fails, patients get handed the bill, the panic, and a camera if they want anyone to care. RELATED LINKSJace Beats CancerJace Yawnick on LinkedImConquer Cancer ArticleCURE Today ArticlePyure BrandsFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What if educating your people so well that they could leave was exactly the point? At Your Health, that's not a risk to manage — it's the philosophy that built an entire learning ecosystem. In this episode, Jamie talks with Aubrey Wall, who came to Your Health from a background in education and now leads Your Health University, the organization's learning management system and continuous-development engine. Aubrey brings an educator's eye to a fast-evolving healthcare environment, where best practice changes by the day and meeting patients where they are demands that staff never stop learning. Here's what you'll hear: Why a healthcare company runs 12-month, Department of Labor–registered apprenticeships — including programs in management, value-based care, population health, and hospice aide preparation How gamification is being built into nurse instruction (straight from Aubrey's dissertation research) The difference between Your Health University (your classroom) and the Hub (your resource library) How LinkedIn Learning delivered roughly $4.2 million in CEUs to staff last year Meeting Leah — the new AI assistant that helps employees find exactly the right course If you've ever believed growing your people is a cost rather than the whole point, this conversation will change how you think. Press play, then go ask Leah a question. www.YourHealth.Org

At 20 years old, newly arrived from Puerto Rico and trying to build a future in science, Benjamin Suarez Jimenez found himself sitting in front of two senior faculty members accused of plagiarism. He knew the material. He had done the work. His mistake came from failing to cite class notes during an exam because nobody had told him that was expected. In a matter of minutes, he watched what felt like his entire career flash before him.On this episode of Standard Deviation, host Oliver Bogler examines the hidden architecture of academic science through the experiences of Dr. Benjamin Suarez Jimenez, Assistant Professor at the University of Rochester and a neuroscientist studying PTSD, anxiety, trauma, and spatial cognition through virtual reality and video game environments.Benjamin traces his path from Puerto Rico to the mainland United States, through the NIH, Columbia University, and eventually to leading his own laboratory. Along the way, he encountered a series of barriers that had little to do with scientific ability and everything to do with access to unwritten rules. From academic gatekeeping to grant writing expectations, he learned that success in biomedical research often depends on knowledge that never appears in a textbook.Oliver explores how those invisible obstacles shape careers, influence research funding, and determine who gains access to opportunity. The conversation also examines the Justice, Equity, Diversity, and Inclusion Program at the Life Science Editors Foundation, which pairs scientists from underrepresented backgrounds with experienced scientific editors. Through that mentorship, Benjamin transformed a critical grant proposal into a successful pilot award that helped launch an NIH R01 application.The discussion extends beyond one scientist's experience. Benjamin describes helping a former mentee navigate dissertation roadblocks that threatened her graduation, illustrating how institutional bureaucracy can delay careers and discourage talented researchers. Together, they explore the hidden administrative burden, cultural barriers, and bias that many scientists carry alongside their research, and what happens when someone who receives support turns around and opens the door for others.RELATED LINKSLife Science Editors FoundationBenjamin Suarez Jimenez LabDr. Benjamin Suarez JimenezBenjamin Suarez JimenezFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Sarah Matt trained as a burn surgeon, working in a field where patients arrive with catastrophic injuries and survival depends on speed, skill, and resources. She left the bedside after confronting a limit that medicine does not like to admit. One physician can only see so many people in a day. The system surrounding those patients decides the rest. She moved into health technology, held leadership roles in startups, and built global infrastructure at Oracle to scale care across populations. Then she watched billions of dollars in digital health and AI initiatives stall out when they hit real clinical environments.This episode follows that pivot from surgeon to strategist and back into direct patient care in rural New York, where she now treats uninsured patients, migrant workers, and communities pushed to the margins. The conversation centers on a persistent failure across healthcare systems. Products get built for regulators, executives, and investors instead of the people who use them. The result shows up in failed adoption, broken workflows, prior authorization delays, and rising physician burnout.The discussion cuts through health policy language and lands on lived consequence. The system rewards speed over usability, scale over trust, and compliance over care. Patients absorb the fallout. Physicians carry the liability. The incentives remain intact.RELATED LINKSDr. Sarah MattThe Borderless Healthcare RevolutionThe Clinical RealistJessica FedererSovatoFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this powerful episode of Diary of a Kidney Warrior Podcast, host Dee Moore is joined by Rebecca Griffiths, who shares her extraordinary journey through kidney failure, dialysis, kidney transplantation and transplant loss.   Rebecca's story is one of resilience, determination and hope. After gaining approximately 25kg of fluid in a matter of days and requiring emergency treatment to drain fluid from around her heart, she found herself facing kidney failure without the support of a renal team. What followed was a life-changing journey that included dialysis, a kidney transplant, the devastating loss of that transplant and the challenge of starting again.   In this episode, Rebecca discusses:  

Special guests, Dr. Carolin Elizabeth, and Dr. John Tharakan who are experts in the field of Palliative Care and devoted Catholics along with Fr. Juventius Andrade, share their knowledge and experiences, offering a unique perspective on finding solace and meaning during challenging times. The discussion illuminates the path of compassionate care and how faith plays a crucial role in providing comfort to those in need.Whether you are a caregiver, a healthcare professional, or someone navigating the complexities of serious illness, this episode aims to provide solace, understanding, and a sense of purpose through open discussions and dialogue.Topics Covered:The Catholic approach to end-of-life careFinding spiritual meaning in sufferingNavigating ethical dilemmas in Palliative CareSupport for caregivers and families

This is another insightful episode of AGEING GRACEFULLY, where we delve into the intersection of faith and critical topics affecting the evening of our lives. In this episode, we're shining a compassionate light on Palliative Care through the lens of our Catholic faith. Join us as we navigate the complex and sensitive landscape of end-of-life care, seeking professional and spiritual insights and guidance.Special guests, Dr. Carolin Elizabeth, and Dr. John Tharakan who are experts in the field of Palliative Care and devoted Catholics along with Fr. Juventius Andrade, will share their knowledge and experiences, offering a unique perspective on finding solace and meaning during challenging times. Join the discussion that illuminates the path of compassionate care and how faith plays a crucial role in providing comfort to those in need.Whether you are a caregiver, a healthcare professional, or someone navigating the complexities of serious illness, this episode aims to provide solace, understanding, and a sense of purpose through open discussions and dialogue. Topics Covered:The Catholic approach to end-of-life careFinding spiritual meaning in sufferingNavigating ethical dilemmas in Palliative CareSupport for caregivers and families

This insightful episode of AGEING GRACEFULLY delves into the intersection of faith and critical topics affecting the evening of our lives. In this episode, we're shining a compassionate light on Palliative Care through the lens of our Catholic faith. Tune in as we navigate the complex and sensitive landscape of end-of-life care, seeking professional and spiritual insights and guidance.Special guests, Dr. Carolin Elizabeth, and Dr. John Tharakan who are experts in the field of Palliative Care and devoted Catholics along with Fr. Juventius Andrade share their knowledge and experiences, offering a unique perspective on finding solace and meaning during challenging times. This discussion illuminates the path of compassionate care and how faith plays a crucial role in providing comfort to those in need.Whether you are a caregiver, a healthcare professional, or someone navigating the complexities of serious illness, this episode aims to provide solace, understanding, and a sense of purpose through open discussions and dialogue.Topics Covered:The Catholic approach to end-of-life careFinding spiritual meaning in sufferingNavigating ethical dilemmas in Palliative CareSupport for caregivers and families

Your guide to a kinder end-of-life journey in the ICU. Synopsis: Every first Wednesday of the month, The Straits Times helps you make sense of health matters that affect you. Tan Tock Seng Hospital and National University Hospital recently launched a new initiative called A Kinder ICU that is supported by a 3.93 million grant from the Lien Foundation. The aim is to integrate palliative care into standard ICU treatment. In this episode, Joyce Teo finds out more about the initiative and the nature of palliative care from her two guests. They discuss how palliative care has evolved and how it provides essential support to patients who are critically ill and their families. The conversation also explores the importance of reflecting on the desired quality of life as one approaches the end of their journey. The two guests are Assistant Professor Neo Han Yee, a senior consultant and head of the palliative medicine department at Tan Tock Seng Hospital, and Ms Charmaine Sim, an advanced practice nurse at the medical intensive care unit at the National University Hospital. Highlights (click/tap above): 2:26 Palliative care 10-20 years ago vs now 5:28 Feeling conflicted seeing a family member in the ICU 9:27 There is an art to palliative care 10:23 Life presents you with unexpected crises 14:10 Medical staff will also feel distressed if they are imposing pain on patients 21:12 Helping the family of a man who fell critically ill just before he was about to return home 23:40 Is it fair to keep trying to save his life? 25:03 The doctor is legally authorised to withdraw life support when life-sustaining efforts are futile, but there’s a need to help the family hold that grief 29:30 Filial piety is a virtue but it can also create a sense of guilt 34:26 What is the minimum quality of life you want to live by? 35:43 You cannot assume that you will pass away in your sleep… Read Joyce Teo's stories: https://str.sg/JbxN Host: Joyce Teo (joyceteo@sph.com.sg) Produced and edited by: Amirul Karim Executive producers: Ernest Luis and Lynda Hong Follow Health Check Podcast here and get notified for new episode drops: Channel: https://str.sg/JWaN Apple Podcasts: https://str.sg/JWRX Spotify: https://str.sg/JWaQ Feedback to: podcast@sph.com.sg --- Follow more ST podcast channels: All-in-one ST Podcasts channel: https://str.sg/wvz7 Get more updates: http://str.sg/stpodcasts The Usual Place Podcast YouTube: https://str.sg/theusualplacepodcast --- Get The Straits Times app, which has a dedicated podcast player section: The App Store: https://str.sg/icyB Google Play: https://str.sg/icyX --- #healthcheckSee omnystudio.com/listener for privacy information.

Your guide to a kinder end-of-life journey in the ICU. Synopsis: Every first Wednesday of the month, The Straits Times helps you make sense of health matters that affect you. Tan Tock Seng Hospital and National University Hospital recently launched a new initiative called A Kinder ICU that is supported by a 3.93 million grant from the Lien Foundation. The aim is to integrate palliative care into standard ICU treatment. In this episode, Joyce Teo finds out more about the initiative and the nature of palliative care from her two guests. They discuss how palliative care has evolved and how it provides essential support to patients who are critically ill and their families. The conversation also explores the importance of reflecting on the desired quality of life as one approaches the end of their journey. The two guests are Assistant Professor Neo Han Yee, a senior consultant and head of the palliative medicine department at Tan Tock Seng Hospital, and Ms Charmaine Sim, an advanced practice nurse at the medical intensive care unit at the National University Hospital. Highlights (click/tap above): 2:26 Palliative care 10-20 years ago vs now 5:28 Feeling conflicted seeing a family member in the ICU 9:27 There is an art to palliative care 10:23 Life presents you with unexpected crises 14:10 Medical staff will also feel distressed if they are imposing pain on patients 21:12 Helping the family of a man who fell critically ill just before he was about to return home 23:40 Is it fair to keep trying to save his life? 25:03 The doctor is legally authorised to withdraw life support when life-sustaining efforts are futile, but there’s a need to help the family hold that grief 29:30 Filial piety is a virtue but it can also create a sense of guilt 34:26 What is the minimum quality of life you want to live by? 35:43 You cannot assume that you will pass away in your sleep… Read Joyce Teo's stories: https://str.sg/JbxN Host: Joyce Teo (joyceteo@sph.com.sg) Produced and edited by: Amirul Karim Executive producers: Ernest Luis and Lynda Hong Follow Health Check Podcast here and get notified for new episode drops: Channel: https://str.sg/JWaN Apple Podcasts: https://str.sg/JWRX Spotify: https://str.sg/JWaQ Feedback to: podcast@sph.com.sg --- Follow more ST podcast channels: All-in-one ST Podcasts channel: https://str.sg/wvz7 Get more updates: http://str.sg/stpodcasts The Usual Place Podcast YouTube: https://str.sg/theusualplacepodcast --- Get The Straits Times app, which has a dedicated podcast player section: The App Store: https://str.sg/icyB Google Play: https://str.sg/icyX --- #healthcheckSee omnystudio.com/listener for privacy information.

In this episode Laura Whitehead interviews Naomi Turrell who is a Senior Palliative care nurse in the wellbeing team at St Andrew's hospice. Naomi shares how she started working in palliative care as a newly qualified nurse and gives advice for anyone who wants to work in this speciality. Naomi is a Practice Assessors for student nurses and she shares her passion for the role. Since becoming a Senior Palliative care nurse Naomi now has a split clinical and managerial role. She discusses how a leadership course she attended has helped her with this transition and the importance of a supportive team when working in palliative care. Laura and Naomi talk about resilience, the importance of support mechanisms and the role a uniform can play when developing your resilience and emotional capacity. Naomi shares her excitement at starting a history taking and physical assessment module and her career plans for the future.

In the late 1980s, a child exposed to fallout from the Chernobyl disaster lay in a hospital bed while doctors told his family there were no clear answers and no reliable path forward. Decades later, that same child, Yan Leyfman, walks into exam rooms as a hematology oncology fellow, expected to deliver clarity inside a system that still runs on delay, uncertainty, and institutional self preservation.This episode traces the throughline from early life shaped by radiation exposure and hospice level uncertainty to a career inside academic medicine, translational research, and oncology media. Yan built his identity around survival and usefulness, moving from patient to physician while carrying the memory of what it feels like to sit on the other side of the table. He helped launch MedNews Week during the COVID crisis to push back on misinformation and expand access to medical knowledge, stepping into a public role while still in training.The conversation stays grounded in the friction between personal narrative and system reality. Clinical training demands efficiency, hierarchy, and emotional distance. Cancer care demands time, clarity, and human connection. Those forces collide in real patient encounters where prior authorization delays, insurance barriers, and fragmented care pathways shape outcomes as much as any treatment protocol.Yan speaks openly about mentorship, belonging, and the drive to make meaning out of survival. The discussion pushes further into what the healthcare system actually rewards, what it quietly strips away, and how quickly empathy can erode under institutional pressure. The episode also examines the role of medical media, where education, industry influence, and narrative control often blur together.This is a conversation about identity under construction, about what happens when someone who remembers powerlessness steps into a role that carries authority, and about whether that memory can survive long enough to change anything.RELATED LINKSYan Leyfman on LinkedInYan Leyfman on InstagramSurviving ChernobylFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Send us Fan MailWhen someone receives a life altering diagnosis or is living with a chronic condition, patients need additional medical, spiritual and emotional support to live well through their diagnosis. Learn how each member of the palliative care team can support the patient while providing comfort to those providing care. Support the showSeniorSupportStrategies.com when you need guidance navigating senior care or how to create your own Aging in Place strategy. 

Confronting the death of a loved one – or the end of our own life – can be frightening and overwhelming. And yet it is something that will happen to all of us. So how can we open up conversations about the way we want to die? Is it possible to avoid pain and suffering? And who are the people who will care for us in our final moments?Datshiane Navanayagam talks to two women who work in palliative care.Dr Tania Pastrana is from Colombia and is now based in Germany where she works for the International Association for Hospice & Palliative Care (IAHPC). And Dr Catherine Millington-Sanders is a general practitioner, and national lead in palliative care for the Royal College of GPs.Producer: Hannah Sander

In this raw and unflinching episode of the Prolonged Field Care Podcast, Dennis sits down with Thad Snyder (physician, former medic, and brigade surgeon) to tackle one of the most uncomfortable topics in combat medicine: what happens when resources run out, evacuation timelines collapse, and “doing everything” is no longer possible.Drawing from a 72-page crisis standards of care memo (originally written for flu and updated for COVID), Thad explains the shift from standard → contingency → crisis care, the ethical duty to plan for no-win scenarios, and why medics, teams, and leaders must have real conversations about capabilities, limitations, and what “living” actually means after catastrophic injury. They explore palliative/comfort care in austere environments, the emotional weight of those decisions, and practical ways to share the burden so the medic isn't left carrying it alone.Essential listening for medics, operators, team leaders, and anyone preparing for large-scale combat or prolonged operations where the next casualty might not get a bird out for days or weeks.Key TakeawaysThere is a duty to plan for crisis standards of care before you're in the middle of it.Leaders and teams must understand the real capabilities and limitations of their medics—not the 437-task training list.Pre-mission conversations about quality of life, advanced directives, and unacceptable outcomes give medics a moral framework when they have to make the hardest calls.Palliative/comfort care is already happening in modern conflicts (Ukraine, etc.) even if no one wants to talk about it.The emotional and moral burden of end-of-life decisions cannot fall solely on the medic—teams and leaders must share ownership.Staying busy to “do something” can sometimes cause more harm than shifting to dignity-focused comfort care.Chapters00:00 – Intro & Pulling the Crisis Standards Memo from the Closet00:56 – Standard, Contingency, and Crisis Care: What Changes When Resources Vanish02:51 – The Duty to Plan: Preparing for No-Win Scenarios04:55 – Why Commanders Need Brutally Honest Briefs on Medic Capabilities06:20 – Surgical Team Limitations, Non-Survivable Injuries, and Realistic Expectations08:40 – Advanced Directives, Quality of Life, and “Living vs. Being Alive”11:36 – Palliative Care in Large-Scale Combat (Ukraine, Future Conflicts)13:15 – How (and When) to Have These Conversations with Your Team14:38 – The Emotional Reality: Holding Someone's Hand While They Die Is Harder Than Any Procedure20:33 – Real Hospital Examples of Hard End-of-Life Discussions25:58 – What Outcomes Actually Matter to Warriors? (Walking, talking, independence)32:00 – Using Patient Values as a Moral Framework in Crisis35:04 – Offloading the Burden: Team Ownership of Comfort Care Decisions40:43 – Shared Responsibility, Rituals, and Preventing Moral Injury43:14 – Final Thoughts + Where to Get the Crisis Standards DocumentThis episode is heavy, honest, and desperately needed. Share it with your team.For more content, go to ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.prolongedfieldcare.org⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Consider supporting us: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠patreon.com/ProlongedFieldCareCollective⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ or ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠www.lobocoffeeco.com/product-page/prolonged-field-care⁠

188 The Intersection of Hospice and Palliative Care: A Conversation with Dr. Jill Schwartz-Chevlin,  MD, MBA, FACP Host Marie Betcher, RN and former hospice nurse, interviews Dr. Jill  Schwartz-Chevlin, an internist and palliative physician with experience in home-based primary care, hospice leadership, and value-based care. Dr. Jill explains value-based medicine as aligning incentives with patient outcomes, especially for people with complex chronic illness, by anticipating needs, supporting symptom recognition, and preventing crisis-driven ER and hospital use that can lead to debility and loss of independence. She describes Vynca's home-based, tech-enabled, interdisciplinary palliative care model across California, Oregon, Washington, Utah, and Idaho, plus enhanced care management and a digital advance care planning platform used in 28 states. She discusses reimbursement challenges, noting Medicaid palliative care programs in California, Hawaii, and New Jersey and Medicare Advantage as current pathways, and explains transferring eligible patients to hospice when available while providing virtual hospice-like support in areas without access. Dr. Jill outlines practical ways to normalize advance care planning conversations and encourages patients and families to advocate for palliative services and proactive planning. 00:00 Welcome and Disclaimer 00:29 Meet Host and Guest 02:13 Dr Jill's Background 05:40 Value Based Care Explained 11:01 Patient Empowerment and Team Care 13:51 Vynca Locations and Services 15:07 Proactive Home Based Model 20:16 Access and Reimbursement Challenges 23:32 Hospice Transition and Rural Gaps 25:11 Advance Care Planning Tips 30:37 Final Takeaways and Closing    https://www.vyncacare.com/   If you want to help, you can donate to help support Hospice Explained at the Buy me a Coffee link   https://www.buymeacoffee.com/Hospice  Hospice Explained Affiliates & Contact Information Buying from these Affilite links will help support this Podcast.  Maire introduces a partnership with Suzanne Mayer RN inventor of the  cloud9caresystem.com,  When patients remain in the same position for extended periods, they are at high risk of developing pressure injuries, commonly known as bedsores. One of the biggest challenges caregivers face is the tendency for pillows and repositioning inserts to easily dislodge during care.(Suzanne is a former guest on Episode #119) When you order with Cloud 9 care system, please tell them you heard about them from Hospice Explained.(Thank You) Marie's Contact Marie@HospiceExplained.com www.HospiceExplained.com   Finding a Hospice Agency 1. You can use Medicare.gov to help find a hospice agency, 2. choose Find provider 3. Choose Hospice 4. then add your zip code This should be a list of Hospice Agencies local to you or your loved one.

Losing his wife recently to bowel cancer, Willis opens up to Stephanie about the challenges of life as a widower and being a single parent, but how the purpose of family and making memories together has helped them move forward.Willis talks honestly about making a conscious choice to be transparent around Nat's illness, how they navigated talking with their children, and how the philosophy of controlling the controllables helped support him through the difficult times.“By being open and transparent, we felt it lightened the burden and brings vulnerability. Being vulnerable gave us strength.” - Willis.This honest and emotional podcast is a must listen as Willis discusses the importance of connection and purpose.

Matthew Zachary is a brain cancer survivor, healthcare advocate, founder of Stupid Cancer and We the Patients, and host of Out of Patients. In April 2026, he returned to the stage at Merkin Hall near Lincoln Center for his first solo public piano concert in almost 22 years while launching his debut book, We the Patients: Understanding, Navigating, and Surviving America's Healthcare Nightmare.What unfolded became far larger than a concert.Over 2 hours, survivors, clinicians, advocates, nonprofit founders, journalists, pharmaceutical sponsors, and healthcare insiders gathered in one room to reflect on 30 years of survivorship, institutional failure, accidental advocacy, and the emotional afterlife of cancer. The evening moved through original piano performances, live chapter readings, and deeply personal conversations about infertility, disability, financial toxicity, insurance denials, grief, burnout, and what happens when patients spend decades navigating systems designed around transactions instead of continuity.Guests including Wendell Potter, Maimah Karmo, Craig Lustig, Shelly Fuld Nasso, Tamika Felder, and others reflected on how the modern cancer advocacy movement emerged largely because patients built parallel systems where healthcare infrastructure failed to meet human needs. The conversation explored how prior authorization, reimbursement incentives, administrative fragmentation, and institutional distrust continue shaping the patient experience across oncology and survivorship.The performance also marked a deeply personal milestone. After brain cancer compromised his left hand at age 21, Zachary spent 6 months rehabilitating both hands to return to public performance for the first time in over 2 decades. The result became part concert, part civic gathering, and part historical record of a generation of survivors who refused to disappear quietly.RELATED LINKSMZLIVE Official WebsiteMZLIVE YouTube VideoFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The World Health Organization has flagged loneliness and social isolation as a major public health concern especially for older adults. The organization says about 100 deaths per hour worldwide can be attributed to poorer health outcomes associated with loneliness. In the U.S., the over 65 demographic is growing rapidly. COVID-19 prevention measures and other factors such as financial constraints and the gap in digital access for this age group have exacerbated the issue. We've been exploring isolation and loneliness across other demographics such as young adults and new parents over the last few weeks. During one of those conversations, Jim in Massillon emailed us to say: "Not sure if there will be a second panel... but, hello, the danger point for most people is after the working life, when work-related 'friendships' go away. That is, late 50s to mid-60s and beyond." We heard your thoughts and we appreciate the comment, Jim. Wednesday on the "Sound of Ideas" we'll talk to representatives from social groups around Northeast Ohio that are working to help older adults build connection and community. Guests:- De'Neitra Brown, iConnect Director, Greater Cleveland Neighborhood Centers Association- Amanda Lathia, M.D., Division Chief, Geriatrics and Palliative Care, UH Cleveland Medical Center- Eleanor Bergholz, Author, "When Knitting Becomes Nurture"- Terry Vaiksnoras, Volunteer, Lake County Phone Pals- Kathey Fury, Participant, Lake County Phone Pals

In December 1996, a 37 year old pharmaceutical executive sat in a Borders bookstore reading medical textbooks on the floor, trying to understand a disease she had never heard of. Multiple myeloma carried a three year prognosis. Her daughter was 18 months old. Her father had just died of cancer. Within weeks, she pushed her doctors to say the quiet part clearly. This would likely end her life before her child entered kindergarten.Kathy Giusti refused to accept passive survival. She built a plan while the system offered fragments. She interviewed oncologists and fertility specialists at the same time. She pursued IVF to have a second child while preparing for treatment. She stayed employed to keep insurance coverage. Every decision carried financial, medical, and emotional risk.That same urgency exposed a deeper failure. Cancer research moved slowly. Academic centers guarded data. Clinical trials lacked coordination. Patients entered a system that demanded compliance without providing clarity. Giusti responded by building the Multiple Myeloma Research Foundation, not as a support group, but as an operating engine to accelerate drug development, fund research, and force collaboration across institutions.This episode tracks the tension between individual agency and systemic failure. Giusti describes how patients navigate diagnosis, insurance barriers, and fragmented care in real time. She explains how data, genomics, and clinical trials reshape cancer treatment while still leaving patients responsible for decisions they are not trained to make. She addresses disparities in access, the limits of early detection, and the reality that progress in oncology often depends on speed, funding, and alignment of incentives.The conversation moves between lived experience and structural critique. It names the cost of delay, the burden placed on patients to act as their own advocate, and the tradeoffs required to push a system forward that still protects itself first.⸻RELATED LINKSKathy GiustiMultiple Myeloma Research FoundationFatal to FearlessAmerican Society of Hematology⸻FEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode of Room 64 we are joined by Cheryl SpillerBarwon Health MND Palliative Care Shared Care CoordinatorSharing information about her role, Cheryl provides a rareinsight into the unique role and the importance of working with MND andPalliative Care teams and patients across the Barwon SW Region. Highlightingthe importance of good communication, sharing information and developingpositive networks to ensure we are providing the best possible palliative careservice to members of the community diagnosed with MND. In thelead up to the “Big Freeze at the G” on June 8th please takethe opportunity to listen to this episode and share through your networks tokeep these important conversations happening.

A study (Children's Palliative Care in Ireland Study) was launched today during Children's Hospice Week, revealing that up to 1 in 168 children in Ireland are living with life-limiting conditions, nearly double previous estimates. This will have significant implications for hospital capacity and national health policy…Joining Shane to discuss this is CEO of LauraLynn, Ireland's Children's Hospice, Kerry McLaverty.

Palliative care in multiple sclerosis spans the disease course, from early screening and support after diagnosis to symptom management and quality‑of‑life optimization in midstage disease, and end‑of‑life care in advanced MS. This episode outlines a staged approach to palliative care, highlights the roles of neurology and primary care teams, and discusses tools such as patient‑reported outcomes and symptom scales to support ongoing assessment of patients and care partners. In this episode, Katie Grouse, MD, FAAN, speaks with Penelope Smyth, MD, FRCPC and Janis M. Miyasaki, MD, MEd, FRCPC, coauthors of the article "Palliative Care in Multiple Sclerosis" in the Continuum® April 2026 Multiple Sclerosis and Related Disorders issue. Dr. Grouse is a Continuum® Audio interviewer and a clinical assistant professor at the University of California, San Francisco in San Francisco, California. Dr. Smyth is the director of the Division of Neurology in the Department of Medicine at the University of Alberta in Edmonton, Alberta, Canada. Dr. Miyasaki is a professor in the Division of Neurology in the Department of Medicine at the University of Alberta and the zone clinical department head for Clinical Neurosciences at Alberta Health Services in Edmonton, Alberta, Canada. Additional Resources Read the article: Palliative Care in Multiple Sclerosis Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Full episode transcript available here Dr Grouse: With the new treatments for MS, people might be saying palliative care is not relevant at all. It's about giving up hope and hopelessness. But this article covers why palliative care is important for your patients and families throughout their illness trajectory. Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast.  Dr Grouse: This is Dr. Katie Grouse. Today, I'm interviewing Drs Penelope Smyth and Janis Miyasaki about their article on palliative care in multiple sclerosis, which appears in the April 2026 Continuum issue on multiple sclerosis. Welcome to the podcast, and please introduce yourselves to our audience.  Dr Smyth: Thank you, Katie. I'm Penny Smyth. I am a neurologist at the University of Alberta, a professor in neurology, and a clinical multiple sclerosis specialist.  Dr Miyasaki: Hi, Katie. Thanks for having us. I'm Janis Miyasaki. I am a movement disorder neurologist primarily who also provides neuropalliative care at the University of Alberta in Edmonton, Canada.  Dr Grouse: It's so great having you today to talk with us about your article. I thought this article was really a wonderful take on the topic. I learned a lot, and I'm really hoping all of our listeners will take advantage of this article and take advantage of all the learning they can get from reading about this topic. So, I wanted to start with a more general question, which is, what is the key message from this article that you're hoping your readers will take away?  Dr Smyth: In terms of key takeaways, I think it's our hope that neurologists will come away from reading this article with, really, an expanded understanding of what palliative care is and how that might be applicable to them in their care for their patients with MS along a continuum of treating people with MS, that there can be components of palliative care and strategies that can be integrated early after diagnosis in, really, anywhere along the continuum of caring for people with MS. We've called that kind of mid-stage. And then there are particular needs for people with MS and their care partners in late-stage or severe MS and end of life that might require different palliative care strategies. I think we kind of have maybe a bit of a bias sometimes in thinking of palliative care as more directed towards those that are near end-of-life. But in fact, it's a much expanded concept.  Dr Miyasaki: And I'll just add that we also discuss a palliative approach, that palliative care skills and philosophies can be used by generalists---in this case, neurologists who are providing care to people with MS---and that adopting certain skills and communication techniques can help us better address our patients' and their families' symptoms. And also to keep in mind that for most people with neurologic illness, the unit of care is not only the patient, but it's the patient and the family, however that family looks.  Dr Grouse: Now, Penny, I'm curious, how are early-stage and mid-stage multiple sclerosis palliative care strategies different from, say, a typical evaluation and counseling that a neurologist would give, say, an MS specialist or even a general neurologist?  Dr Smyth: Thank you, Katie. That's a great question, and something that actually I learned in writing this piece with Janice and from her as a neuropalliative care expert. I think in terms of early strategies around palliative care that can be helpful to the general neurologist in their office, palliative care is about holistic support for patients and their care providers spiritually, emotionally, physically. There are components of palliative care and symptom management and making sure that the patient is at the center of the care, as well as support for their care partners with their holistic approach of relief of suffering as well as offering hope. When I started this piece, I was thinking that many of us neurologists, I think, often informally utilize many of these components already when we're dealing with patients early on after diagnosis in terms of communication, counseling, and education; going through their fear of an uncertain future; spiritual well-being; and then connecting them with supports for adaptive coping strategies. And then as well in mid-stage, which is really around what we can do in symptom management and improving quality of life, with screening tools and patient-reported outcome measures. However, I have to say that there are many unmet needs for people with MS and their care partners that they identify that are clearly not being met by us neurologists in this day and age. So even though we may be incorporating some of these strategies, I don't think we're meeting the mark all the time and hitting the target, especially in our busy office practices, in various ways. Dr Grouse: Given that, at a high level, what are some important early-stage MS palliative care concepts that we should be keeping in mind when we are counseling patients in these stages of the disease? Dr Miyasaki: An important concept to keep in mind for neurologists dealing with early-stage MS patients is that for us, we feel successful that we have made a diagnosis. And yet for the patient, it is taking away that hope. Maybe it's not MS. Maybe I just have a numb hand and it's gonna go away. And for us to appreciate that while we make this diagnosis multiple times a week---or, for MS specialists multiple times a day---for this person, it is the first time, the first experience, and it shakes their entire foundation of who they are as a person, how they will perform all the tasks and roles that they have in society, in their professional lives, in their family structures, and in their close, intimate relationships. As physicians, we may be overwhelmed by acknowledging that. I feel that it's important for us to understand the needs that our patients have and to allow them to have their feelings. You know, feelings can feel messy and time-consuming, and yet when we fully see our patients, I feel that this is the best of medicine. And it certainly is, in terms of palliative care, the principle that we seek. We accept all of the patient, the joy and the sorrow, the anger and the frustration. We accept it all, and we try to determine what will serve this person who is suffering in front of us now.  Dr Smyth: There's another piece to this, which came up as Janice and I were writing together. We were talking about offering a prognosis to a patient as to how they would do, and this was something that I thought deeply about, because I said, we always communicate how uncertain the prognosis is and how we can't predict the future. And then she said to me, well, what about offering a roadmap to a person with MS soon after diagnosis as to how you're gonna determine how they do over the next couple of years? Which are really important years in terms of determining how patients are doing on their disease-modifying therapies, whether they're having progression or not, and things. It's a pivotal time. So, if you can offer a roadmap to a person with MS and say, look, this is when we will be following you up. This is how we will be following you with MRI and biomarkers if you have that available, and this is how we will determine how responsive you are and then how we move forward from there. Dr Grouse: Really important concepts. And the roadmap certainly makes a lot of sense to me and something that, apart from just being useful to the patient for so many reasons to help set expectations, you know, is useful for us to better partner with the patient so they understand this is sort of how we do things and everyone's sort of expectations are met. So, I think those sound like really great goals and things to keep in mind. Now, we talked about early-stage MS palliative care concepts. How does that change as you get into the mid-stage of the disease?  Dr Smyth: Yeah. So, this is reflecting the fact that the course of MS is so different and the experience of MS is so different person to person. And so, what do we do as neurologists when we follow these people long-term over years and decades of living with their MS as their needs evolve, as their symptoms evolve, and as their disability evolves? Well, really, this is about the time of getting into, what are the symptoms that they're struggling with, what are the causes of their suffering at various points? And then how do we identify that, maybe with use of patient-reported outcome measures, screening scales, things like that. And then how do we direct symptomatic management to the specific symptoms that are causing distress to the patient? As well as trying to improve their quality of life in various ways, treating their comorbidities, making sure to check on exercise, healthy living, and that kind of thing.  Dr Grouse: Now getting into, I think, topics that we're more used to thinking about when we think about palliative care: a lot of us, I think, are really unsure of the right time to discuss advanced care directives in the course of multiple sclerosis, and I think that's not helped by the fact that many of us are just, in general, not terribly comfortable talking about those types of things in general. What is your advice to questions like this?  Dr Smyth: And this is something that, again, Janice and I had to come together on, because there is no universal accepted time for when is the right time in multiple sclerosis to discuss advanced care directives and goals of care. And in fact, when they have looked at it in the literature, different things have come out. It has come out that neurologists can be uncomfortable discussing this. There's unique challenges to people with MS in that they have a diagnosis at a young age with an uncertain trajectory of how their course of disease is going to go. And many of these things lead care providers to be somewhat hesitant as to when is the right time, as well as, there were identified barriers within patients themselves as to when the right time might be to discuss. In that, you know, some of the coping strategies might be, as identified by some of the qualitative studies that have been done on this, around the fact that they would prefer to focus on the present rather than the future. In some studies expressed an ambivalence as to when they thought the right time might be, as well as some negative experiences that they might have had from providers trying to discuss these things in their previous experience. So, I went back to looking at the European guidelines for palliative care in MS, who suggested when a person might have severe MS---which they define as walking with bilateral aids for at least twenty meters or an EDSS of six or higher---or trigger-based, when there has been a change in the patient's status, when there's been a decline in some way or progression. Now, this is a little different, actually, than what we offer other people with neurologic diseases, and I don't know if that's the right answer. And this is where I'm going to turn it over to Janice, because I think we could learn something, as neurologists who treat people with MS, from our palliative care specialists.  Dr Miyasaki: I think of advanced care planning in a very different way. I think what a lot of the patients were expressing in the studies was that being asked about advanced care planning signaled to them in some way that they have reached this point in their illness where things aren't going so great and I anticipate that you may run into complications. Whereas in our movement disorder clinic, one of our fellows did a study looking at capacity for decision-making. And even in people who scored normally on the Montreal Cognitive Assessment, they had impairments in some of the domains of decision-making. And so, our philosophy in movement disorders at least---and some of our patients are quite young who have multiple system atrophy, they could be in their forties---we take the philosophy that everyone over the age of decision-making capacity, which is generally eighteen, should have some goals of care established. And how I introduce it in my clinic is, you know, for the young resident, you want the full-meal deal, because the likelihood of the resident surviving the ICU admission is very high. And then when we look at me, who… I am older, the likelihood of surviving an ICU admission is considerably lower. And so, the appropriate goals of care might be that I am willing to go to the ICU, and if things go well, then they can continue. But if things are not going well, they can have a discussion with my personal directive or power of attorney to talk about what the goals of care should be. And then the other aspect is sometimes having the conversation with family is really important because most of our families in hospital express an uncertainty. Am I doing the right thing? And they want to do the right thing for their loved ones. And most people actually say, if you ask them, I don't want to burden my family with making decisions that are going to tear at their hearts. So, then we can't actually make good informed decisions for our loved ones unless we have clear conversations. I think it does speak to our superstitious beliefs that if we talk about death, it's going to happen. But I hope the listeners will take my word for it, it really doesn't. And someone had a really good saying about the advanced directive. They're kind of like evening clothes. You should take them out every once in a while and make sure they still fit. And so, when you normalize it in this way, it helps people to just say, oh, yeah, it's once a year. Dr. Miyasaki is gonna ask me about how do I feel about those goals of care. And then it doesn't have this portent of, oh, I'm not doing well. Instead, it's just, this is what we should all be doing for our sake and for our family's sake.  Dr Smyth: Now, one thing that I have to add on to this is that it is important to try to establish advanced care directives before patients experience cognitive decline, because then that can make it a much more challenging conversation and brings nuances of challenge into the interactions, which, you know, are hard.  Dr Grouse: And Penny, I'm glad you brought that up, because I was really struck by that point too when reading this article, how easy it is to miss the subtle signs that cognitive changes are happening. I think it's just- it's a good kind of segue into that topic in general, but it is such an important link to, you know, making sure that you get those advanced directives at a time when the patient's really able to express and understand what they're talking to you about. Now, on the topic of the cognitive screenings, what's a good way to do this type of screening, and why is this type of screening so particularly important in the case of multiple sclerosis?  Dr Smyth: Yeah. Thank you, Katie. I think that it's important for our listeners to think about and recognize when we see our patients with MS because it is one of the invisible symptoms that people with MS can live with and may not be apparent on regular conversation in the office. So, it's important to deliberately ask about subjective challenges in cognition. Ask the partner about how they're doing in terms of their cognition in various ways. As well as asking them and exploring then, how are they doing in their professional roles if they're working or in their surroundings? How are they coping on a daily basis on a cognitive level in addition to a physical level? We know that cognitive issues are actually the biggest contributor for not working and are a huge driver of disability in MS in terms of functioning, even more than physical decline in many ways. So, it is important for us neurologists to keep top of mind and to think about and deliberately attend to. There are screening tests that we can do in the office. The easiest for us, which measures the verbal processing speed, is the SDMT test, which is a ninety-second test matching symbols and numbers. It's easy to do. You can train a MOA to do it before you see the patient and things like that, and it just gives you an idea as to where the patient is at. And usually they're having difficulties if they're greater than two standard deviations below the norm for their age, or if there's a significant drop of four or eight points, and that might signal to you that there might be more going on. You can explore it, and then if you do have this available, the ability to refer for neuropsychological testing if there's questions. But often we can't get it with the MoCA score, unfortunately.  Dr Grouse: Talking about all these concepts, I think they all sound great. I think a lot of us hearing this will naturally say, "Yes, these are absolutely things we should be incorporating in the care of these patients." What I wondered about was, certainly we're all very busy, it is really hard to find time for a lot of these things. We don't always have access to specialists who can help us with some of these conversations. How can we find time, and how can we work this into the care of our patients effectively and still make time for all the other things we have to talk about, and make sure that we're seeing all of our other patients and staying on time and all of those things?  Dr Miyasaki: Yes. I think that's the challenges of dealing with people who actually, over time, their care needs increase, is huge in neurology. I can't think of a single subspecialty where care actually gets easier. It's constantly getting harder. You know, having come from private practice, I completely understand my colleagues' challenges in the community. Some of the ways that other groups have managed this when they don't have government or university support in their center is actually to look at not-for-profits. There are a lot of not-for-profits that can help in terms of wayfinding for social services, explaining to the patients and the family what is available to them. And in fact, some of them can also provide some cognitive supports, as well as point them in the way of day programs. And many of them have very established caregiver support groups, as well as patient support groups for various stages of their illness. So, I think it requires for the individual or small or even a large group practice to be inventive, to look in your community and see what resources are available and free for your patients in order to establish that loose team without boundaries to help your patients. Of course, for those in academic centers, I know that times are tight for all of us, and if you haven't established a team, it is a challenge; and then learning how to write a business plan or a briefing note for your institution and to learn how to speak the love language of administrators, is really key to putting forward the needs of our patients. Which, compared to heart attack patients or hips and knees, they are very rare, and yet our patients can result in significant cost to the healthcare system. So, we do have an opportunity to make the case that putting a little bit of investment in the ambulatory setting can result in significant cost savings to the system when it comes to acute care hospitalization.  Dr Smyth: So, I was thinking, Janis, as you were talking about that, when you were talking about not-for-profit groups, it's really the MS societies in various countries that are very active in this and have a lot of resources available, especially for care partners.  Dr Grouse: Those are really great tips. Thank you for bringing those up as potential other resources we can take advantage of. I wanted to ask specifically about physician-assisted death and assisted suicide, which certainly does come up, especially in later-stage parts of the disease. How can palliative care specialists be helpful when patients do express interest in these types of interventions?  Dr Miyasaki: As you know, Katie, in Canada, we've had a legislative right to access to what we call medical assistance in dying. When the legislation passed, one of my other colleagues and I felt that these were the only conversations we were having with our patients. In all this experience, I have sort of developed in my mind a framework of people who are what we call MAID-curious. They want to know what their rights are and how it would look, when they feel the time is close, for them to exercise that right. And then there are those who are fearful of future suffering. And some of them may have a very unrealistic view of what the future will look like. And this may be in particular for multiple sclerosis because many of the public's view is based on what treatment was like thirty years ago. It may not be informed by more recent treatment where patients actually do quite well, and the majority never get to progressive MS. And so, to explore and be open to that request is the first thing that is important. And then if the person has unresolved symptoms that, traditionally, we can't care for, the palliative care specialist can be very helpful because they just have inventive ways of looking at things. They look at it outside the box, and they have a different toolkit available to them. I would not want all neurologists to just send all these patients requesting physician-assisted death to their palliative care colleagues. But I think for those who are having unaddressed symptoms, it can be very helpful. Certainly, if there is an acute event in the hospital, then this is a time of crisis. And often hospitals will have an in-hospital palliative care team who can come and speak to the patient about what is going on and address some of their needs. And I would also like to emphasize the importance of spiritual care, because for many of our patients, they are not just having the physical suffering, they are also having the spiritual suffering of hopelessness or of feeling that they are a burden or that they just are not seen because a lot of the symptoms in MS are invisible. To have that understanding by a spiritual care counselor is really helpful for the people to feel understood and to reduce some of that suffering.  Dr Grouse: That's a really great point, I think, to end on, and I think it really ties in a lot of the themes that we've been talking about today. Thank you so much for coming to talk with us today. It's been such a pleasure having you both here. Dr Smyth: Thank you. Dr Miyasaki: Thank you, Katie. Dr Grouse: Again, today I've been interviewing Drs Penelope Smyth and Janis Miyasaki about their article on palliative care in multiple sclerosis, which appears in the April 2026 Continuum issue on multiple sclerosis. Be sure to check out Continuum Audio episodes from this and other issues, and thank you to our listeners for joining today.  Dr Monteith: This is Dr. Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Send us Fan MailChronic conditions or a life altering diagnosis requires additional care beyond regular medical check ups. Learn what next steps could be part of your journey and the care support offered by a palliative care team. Support the showSeniorSupportStrategies.com when you need guidance navigating senior care or how to create your own Aging in Place strategy. 

At 19, Shlomit woke up unable to speak. The right side of her body went numb. An emergency room sent her home and called it stress. That moment did not end in a diagnosis that changed policy or triggered reform. It sent her into a decade long pursuit of understanding how the brain fails language and how the healthcare system fails patients who cannot advocate for themselves.Shlomit trained as a speech language pathologist and spent years inside acute care hospitals and ICUs, performing endoscopies and treating patients with brain injury, stroke, and dysphagia. She watched medical teams rotate in and out, deliver dense updates, and leave families nodding without comprehension. She stayed behind and translated. Every day, patients told her she was the only one who explained what was happening. That gap is not an accident. Hospital systems optimize for throughput, not understanding. Patients move through beds based on cost, not readiness. Discharge planning becomes a financial decision wrapped in clinical language. A stay under 48 hours can shift the insurance burden dramatically, leaving patients exposed to higher out of pocket costs. Shlomit left the system and built Patient Path NYC, a private patient advocacy service. She now spends 15 to 20 hours a week per client reading charts, coordinating care teams, and translating medical decisions into plain language. Her work sits in the uncomfortable space between healthcare policy and lived experience. Families pay out of pocket to understand their own care. Hospitals benefit from the clarity she provides while maintaining the same structural incentives that created the confusion.This conversation tracks the human cost of fragmented care, the economics behind discharge decisions, and the quiet reality that patients who cannot communicate clearly often lose control of their own outcomes.RELATED LINKSShlomit LibertyShlomit Liberty on LinkedInPatient Path NYCBoard Certified Patient AdvocateFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In 2020, developmental biologist Dr. Crystal Rogers drove the country roads outside Davis, California crying between grant rejections, wondering whether she was about to lose her lab, her career, and the scientific future she had spent years building. She had already done what academia tells young scientists to do. She earned the credentials. She landed a faculty position at UC Davis. She built a lab. Then the real test began.On this episode of Standard Deviation, Dr. Oliver Bogler examines the unspoken rules that determine which scientists survive academic research and which quietly disappear from it. The conversation follows Crystal Rogers and cancer biologist Dr. Michelle Mendoza as they collide with the “Hidden Curriculum” of biomedical science: the unwritten rhetoric, institutional signaling, and grant writing strategies that often decide who receives funding, tenure, and long term stability.Michelle Mendoza entered a tenure track position at the Huntsman Cancer Institute while raising 3 children, navigating a divorce, and trying to secure major NIH funding during COVID. What looked like objective scientific review turned out to depend heavily on persuasion, presentation, and insider fluency. Established researchers could promise massive research agendas based on reputation alone. Junior investigators faced a completely different standard.Oliver traces how the Life Science Editors Foundation and its JEDI program intervened by pairing scientists with former editors from journals including Cell and Nature. The work had little to do with commas or grammar. Editors challenged logic, structure, and scientific framing before grant reviewers could destroy an application in public.Both researchers eventually secured career defining grants. One realized she would keep her job and not have to move her family. The other celebrated by ordering a personalized “DEV BIO” license plate and driving through Davis blasting nineties hip hop and Beyoncé.The episode exposes how biomedical research funding rewards institutional fluency as much as scientific talent, and how hidden systems inside academic medicine continue shaping who gets to stay in science long enough to make discoveries.RELATED LINKSDr. Crystal Rogers LinkedInDr. Crystal Rogers Faculty PageDr. Crystal Rogers LabDr. Michelle Mendoza LinkedInDr. Michelle Mendoza Faculty PageHuntsman Cancer Institute Mendoza LabLife Science Editors FoundationFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Families who've lost a child say new funding from the government for paediatric palliative care will mean others won't have to do it alone. This morning, health minister Simeon Brown announced 15-and-a-half million dollars from Budget 2026 for two dedicated specialist teams in the North and South islands. Health correspondent Kate Green reports.

Palliative care விழிப்புணர்வு வாரம் இந்த ஆண்டு மே 10 ஆம் தேதி முதல் 16 ஆம் தேதி வரை கடைபிடிக்கப்படுகிறது. Palliative care இறுதிக்கால சிகிச்சை என்றால் என்ன? இந்த சேவையை யாரெல்லாம் எங்கிருந்து பெற்றுக்கொள்ளலாம்? அதற்கான நடைமுறை என்ன? போன்று Palliative care குறித்து பல கேள்விகளுக்கு பதில் தருகிறார் முதியோர் நல வைத்தியர் Dr பூரணி முருகானந்தம் அவர்கள். அவருடன் உரையாடுகிறார் செல்வி இன்பசேகரன்.

We all make mistakes. Sometimes we're able to brush off these experiences, but other times we're left with regrets. We regret that thing we said, how we handled that situation, or the choice we made. In this episode, host Samantha Laine Perfas, palliative care specialist Susan Block, neuroscientist Liz Phelps, and behavioral scientist Leslie John discuss how to make peace with the actions – or inactions – that still haunt us.

In 2008, Katy Talento walked away from Capitol Hill and into a Catholic convent. Within a year, she walked out. Within another decade, she sat inside the White House shaping health policy. Somewhere in between, she got labeled “infertile” after a single cycle of testing and spent years believing it.That label stuck. The pain that came before it never got investigated. Doctors offered birth control and moved on. No one asked why her body was struggling. No one followed the thread.Talento built her career inside the very systems she now critiques. She worked on federal health policy, global disease programs, and later advised the Trump administration on healthcare reform. She helped advance price transparency rules in a system where hospitals can still list 457 different prices for the same service.Then she left.Now she builds employer health plans that bypass insurers, PBMs, and traditional networks. Her approach replaces insurance contracts with direct payment, nurse navigators, and cost sharing models that promise simplicity but raise hard questions about risk and protection.This conversation sits in that tension.Talento describes a healthcare system shaped by layered incentives, where insurers, hospitals, and intermediaries profit from complexity. She argues that employers hold the leverage to disrupt it. The host pushes on what happens when patients fall outside those structures, when contracts disappear, and when community based models fail.The episode moves through infertility, misdiagnosis, insurance design, and the mechanics of employer sponsored care. It tracks how policy decisions made in Washington ripple into exam rooms, billing departments, and family lives.It also confronts a harder truth.Even insiders who understand the system can still get caught in it.RELATED LINKSAllBetter HealthKaty TalentoThem Before UsAn Arm and a LegRelentless Health ValueFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In a wooded campground cabin in the early 2000s, 19 year old Ben Unger stood in the doorway and watched 20 naked men form a circle around a crying teenager. A counselor held up two tangerines and shouted, “These are your balls.” The exercise claimed to cure same sex attraction by forcing young men to “reclaim” their masculinity from overbearing mothers. Phones had been confiscated. Parents had paid thousands of dollars. Religion supplied the script. Pseudoscience supplied the props.Ben had grown up in an Orthodox Jewish community in Brooklyn and later studied in Israel to become a rabbi. When he admitted he felt attracted to men, rabbis told him to eat 7 figs a day, immerse in a ritual bath 5 times daily, or marry a woman and trust that “if there's friction, it works.” At 19, he entered conversion therapy through an organization called Jews Offering New Alternatives to Homosexuality, known as JONAH. He left with depression, religious trauma, and 6 months of silence toward the mother he had been taught to blame.Years later, represented by the Southern Poverty Law Center, Ben helped sue JONAH for consumer fraud in a landmark New Jersey case. The argument centered on evidence, not theology. Sexual orientation cannot be changed. The jury deliberated for 3 hours and ruled against the organization. The verdict helped reshape how states regulate conversion therapy and protect minors from psychological harm disguised as treatment.Today, Ben runs Buff Personal Training in New York City, a gym built on autonomy, mental health, and self respect. His story traces the arc from institutional control to self authorship. The conversation examines religion, LGBTQ rights, conversion therapy, consumer protection law, and the lasting cost of being told your identity is a disorder.RELATED LINKSBen Unger on LinkedInBen Unger on InstagramBUF Personal TrainingSouthern Poverty Law CenterJONAHFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

THE CHAPLAIN AND THE DOCTOR is filled with warmth and humor, this buddy film follows two unlikely allies working to bring curiosity, connection, and compassion to a broken healthcare system - one patient at a time. Betty Clark is an 80-year-old, African American chaplain on staff at The Wilma Chan Highland Hospital Campus, the level-one trauma center in Oakland, California. Jessica Zitter is a white Jewish physician who has been Betty's colleague on the Palliative Care service for over a decade. The two women are an unlikely team: chaplains and doctors do not usually pair up within the hierarchical and siloed halls of the hospital. Dr. Zitter, trained to believe in medical interventions and science, was not seeking a relationship with a chaplain. And Chaplain Clark never expected the doctor to take interest in her work.  But with time, the two women's shared values and history overcome the forces that keep them apart, and they go on to do their best work together.  THE CHAPLAIN & THE DOCTOR models a new kind of care, one that honors both spirit and body, the diverse backgrounds of patients, and the most human needs we all share.  This is a must see film documentary not just about the story of two women who take their purpose and professions to help others, but we see that it help each other to become even better versions of themselves. #healtcare #doctor #chaplain #documentary #film #filmmaker #filmmaking #filmdirector #bondoncinema #medicine #faith #spiritual #healing

THE CHAPLAIN AND THE DOCTOR is filled with warmth and humor, this buddy film follows two unlikely allies working to bring curiosity, connection, and compassion to a broken healthcare system - one patient at a time. Betty Clark is an 80-year-old, African American chaplain on staff at The Wilma Chan Highland Hospital Campus, the level-one trauma center in Oakland, California. Jessica Zitter is a white Jewish physician who has been Betty's colleague on the Palliative Care service for over a decade. The two women are an unlikely team: chaplains and doctors do not usually pair up within the hierarchical and siloed halls of the hospital. Dr. Zitter, trained to believe in medical interventions and science, was not seeking a relationship with a chaplain. And Chaplain Clark never expected the doctor to take interest in her work.  But with time, the two women's shared values and history overcome the forces that keep them apart, and they go on to do their best work together.  THE CHAPLAIN & THE DOCTOR models a new kind of care, one that honors both spirit and body, the diverse backgrounds of patients, and the most human needs we all share.  This is a must see film documentary not just about the story of two women who take their purpose and professions to help others, but we see that it help each other to become even better versions of themselves. #healtcare #doctor #chaplain #documentary #film #filmmaker #filmmaking #filmdirector #bondoncinema #medicine #faith #spiritual #healing

Drew Flugstad-Clarke never planned to work in brain cancer. She planned to play Division I soccer at Georgetown. She planned to paint. She even tried investment banking, answering emails at 4am in a cubicle that never slept. Then in June 2022 her father, Jim, was diagnosed with glioblastoma at 57. He died 1 day shy of 7 months later, just before his 58th birthday. His symptoms began with emotion, not seizures. A steady HR executive suddenly cried. His golf game slipped. By the time he entered the hospital for a scan, he did not leave without surgery. A subway poster for a 5K became a lifeline. Drew showed up. She found a community. She later joined the American Brain Tumor Association as Community Manager for the Eastern Region. This conversation walks through anticipatory grief, caregiving in real time, strategic numbness, and what it costs to curate hope when the median survival clock is already ticking.RELATED LINKSDrew Clark Flukestad on LinkedInTopor StudiosAmerican Brain Tumor AssociationGeorgetown University Women's SoccerFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode, Carla P. Cangemi, MD, FAAP, Vice President and Chief Medical Officer, St. Mary's Healthcare System for Children's, shares how the organization reimagined its palliative care program as Compassionate Care to better support children and families throughout every stage of the care journey. She discusses the multidisciplinary, holistic model, the importance of early trust-building conversations, and how family centered services improve quality of life and emotional support.

Jaclyn Coble shares her journey from veterinarian to rehabilitation therapist, with a focus on pain management in palliative care. She also talks about how Onlinepethealth inspired her to pursue rehab certification and create her app, Rosie Paws, which helps owners track their pets' daily care, pain levels, and more. This episode offers insights into palliative care while showcasing how innovation and passion can open new ways to support pets and their owners. Learn more about Jaclyn M. Coble: https://sealegsvet.com/veterinarian-west-roxbury-ma/ Learn more about The Veterinary Academy of Higher Learning: https://vahl.vet/en/ To learn about Onlinepethealth, watch a free webinar, or join any of our Facebook groups, click here: https://onlinepethealth.com/podcast

Send us Fan MailTony and Courtney Penn explore why AI adoption in home-based care hinges not on the technology itself, but on how organizations support the people who use it – especially the seasoned clinicians and admissions staff who carry decades of institutional knowledge.

In this episode, Carla P. Cangemi, MD, FAAP, Vice President and Chief Medical Officer, St. Mary's Healthcare System for Children's, shares how the organization reimagined its palliative care program as Compassionate Care to better support children and families throughout every stage of the care journey. She discusses the multidisciplinary, holistic model, the importance of early trust-building conversations, and how family centered services improve quality of life and emotional support.

In this episode, Carla P. Cangemi, MD, FAAP, Vice President and Chief Medical Officer, St. Mary's Healthcare System for Children's, shares how the organization reimagined its palliative care program as Compassionate Care to better support children and families throughout every stage of the care journey. She discusses the multidisciplinary, holistic model, the importance of early trust-building conversations, and how family centered services improve quality of life and emotional support.

Send us Fan MailIn Part Two of Future-Proofing Care: The Challenges We Face in Hospice and Palliative Care, Chris Comeaux and Cordt Kassner explore the accelerating forces reshaping hospice and palliative care—from shifting patient demographics to the rapid rise of AI and regulatory complexity. As the industry transitions to serving a more diverse, resource-variable baby boomer population, leaders are challenged to rethink how care is delivered, personalized, and sustained in an increasingly complex environment.  The conversation dives into the tension between innovation and regulation, the transformative (yet imperfect) role of technology, and the growing mental health crisis impacting patients, families, and care teams alike.  With AI poised to revolutionize communication and care delivery—but infrastructure and human connection still critical—the episode emphasizes a central truth: technology must enhance, not replace, the heart of care.  Ultimately, this episode offers a strategic roadmap for leaders navigating uncertainty.  Through the memorable framework “Grow, No, Flow, Sow, R&D,” the hosts provide actionable insight into building resilient, future-ready organizations—equipping healthcare and nonprofit leaders to move from feeling overwhelmed by change to actively shaping what comes next.  Key TakeawaysDemographic shifts—especially the rise of the baby boomer population—are redefining care expectations, financial realities, and caregiver availability.  Innovation is outpacing regulation, creating friction—but also opportunity for leaders to proactively shape policy.  AI and emerging technologies will dramatically transform care delivery, but must be used to enhance—not replace—human connection.  The mental health crisis is increasingly intersecting with hospice and palliative care, exposing systemic gaps and new responsibilities.  Organizational culture (“reculture”) is the critical enabler—or barrier—to successfully navigating rapid change.Co-Host:Cordt Kassner, PhD, Publisher of Hospice & Palliative Care Today & CEO and Founder of Hospice Analytics Host:Chris Comeaux, President / CEO of Teleios, Author of The Anatomy of LeadershipThe Anatomy of Leadership podcast explores the art and science of leadership through candid, insightful conversations with thought leaders, innovators, and change-makers from a variety of industries. Hosted by Chris Comeaux, each episode dives into the mindsets, habits, and strategies that empower leaders to thrive in complex, fast-changing environments. With topics ranging from organizational culture and emotional intelligence to navigating disruption and inspiring teams, the show blends real-world stories with practical takeaways. The goal is simple yet ambitious: to equip leaders at every level with the tools, perspectives, and inspiration they need to lead with vision, empathy, and impact.https://www.teleioscn.org/anatomy-of-leadership

The new documentary "The Chaplain & the Doctor" spotlights the relationship between Betty Clark, a chaplain working at The Wilma Chan Highland Hospital Campus, and her colleague Dr. Jessica Zitter. The film follows their work together to try and combat implicit bias and racism in medicine. Clark and Dr. Zitter discuss the film, which premieres April 23 at the Angelika Film Center and will run at the Maysles Documentary Center. Film still courtesy of Reel Medicine Media

In this episode we lift the veil on death, dying and advances in palliative care with world-renown expert in the field, Dr David Casarett. We discuss the experience of death, the fears many people share and how advances in our understanding of death can inform a better experience for both the dying and their families.Talking on the release of his latest book "Undiscovered Country - A Doctor's travel guide to the end of life" Dr David gives us a fresh perspective on dying - something many prefer not to acknowledge and even fewer people care to talk about.Peppered with entertaining anecdotes, real life situations and informed insight, Dr David's outlook, as shared in his latest book, is enough to put even the most fearful mind at ease.We hope you enjoy our discussionBuy the book here:Undiscovered Country: A Doctor's Travel Guide to the End of Life : Casarett M.D., David: Amazon.com.au: BooksWatch us:YouTube: (48) Are you dying to know? - YouTubeContact us:insta: @are_you_dying_to_knowemail: areyoudyingtoknow@gmail.comWARNING:This video contains graphic material that may disturb some viewers. It is not suitable for children. Viewer discretion is advised.The views, thoughts, explanations and opinions expressed in this video belong solely to the presenters Tracy & Trish and not necessarily to their employers, organisation,  or other groups or individuals.

THIS IS PART TWO - Listen to part one hereCONTENT HEADS UP:  This episode contains discussions of death, dying, end-of-life care, and sensitive topics related to mortality, including chosen suicide and medicalization of death and illness. Listener discretion is advised, especially for individuals who may find these topics distressing or triggering. Please prioritize your emotional well-being while engaging with this content.Also, Ali wants to note that when she asks Karen about her thoughts on suicide, she meant to make a disctinction between “chosen” suicide (when someone wants to live but they are in too much physical pain/their body is too deteriorated without hope of recovery) and “suicide under duress” (meaning due to emotional/psychological/spiritual pain, that may or may not be accompanied by an unavoidably dying body, the person does not want to live). Of course facing a death someone does not want can also be considered duress!  SYNOPSIS:What does good acting and dying have in common? In this episode, Ali discusses all things death, dying, and living as bodies with Karen Bellone, Certified End-of-Life Doula and Death Educator. They focus on the interconnectedness of life and death, the significance of conscious living, and the complexities of end-of-life care. Karen shares her experiences working with dying individuals, highlighting the challenges of the dying process, including issues related to dementia and Alzheimer's. They discuss the importance of compassionate and holistic approaches to end-of-life care, emphasizing the need for conscious decision-making aligned with personal values to achieve a good death without regrets. Throughout the conversation, they reflect on the essence of embodiment and the importance of being present in the moment, trusting the intelligence of the body to embrace a richer life and ultimately a better death.  ALI & KAREN EXPLORATION POINTS:-  The concept of a 'good death,' this discussion emphasizes the significance of conscious decision-making and holistic approaches to end-of-life care, challenging societal norms and perceptions surrounding death.  -  The complexities, ethical considerations and medicalization surrounding end-of-life decisions, highlighting the need for open dialogue and support for individuals facing such choices.-  The role of a Death Doula, illuminating the profound support and guidance provided by these compassionate professionals in assisting individuals and families through the dying process, fostering a sense of empowerment and comfort.-  How our physical and emotional bodies communicate and play integral roles in the dying process, highlighting the importance of listening to and honoring the body's wisdom. -  Insights into embracing conscious living, pursuing meaningful experiences, and aligning actions with personal values to cultivate a sense of fulfillment and purpose.-  Sensory experiences shape our perception of life and death, emphasizing the significance of sensory elements in the dying process and fostering connections with loved ones.To be an angel to the podcast, click here: To read more about the podcast, click here: MORE ALI MEZEY:Website BODY MAPPING VIDEO LIBRARYPersonal Geometry® and the Magic of Mat Work Course informationTransgenerational Healing FilmsMORE KAREN BELLONE:Film Website: Website: The Seventh Sense BIO:Founder, Doula, Educator: Karen Bellone, MFA, is a Certified End-of-Life Doula and Death Educator. She is the founder of The Seventh Sense in NY's Hudson Valley, where she is an integral part of a worldwide community that is reigniting the wisdom of death within our modern lives. She is also founder of Exit Strategy for Dying, a monthly Death, Arts and Culture Readers supporting a resource hub to educate and refocus the narrative around death and grief through the lens of arts, culture, storytelling and innovation. Prior to embracing her passion for end-of-life work, Karen has had a long career as an award-winning filmmaker and internationally collected photographer. She received a BFA in Film Production from New York University, and did graduate work with the world-renowned Actors Studio, through their inaugural program at the New School for Social Research.After training and becoming certified with INELDA (International End of Life Doula Association), Karenworked with an innovative hospice in Los Angeles where her skills as a death doula were developed and broadened. In addition to working with patients in various stages of their life journeys, she was responsible for training the volunteer staff, nurses and other hospice and medical professionals to bring more understanding, humanity and compassion into their work with the dying. She spoke regularly with groups, such as the Alzheimer's Project, about the role of the doula at end-of-life, and the space that can be held to bring about ‘a good death'. She believes strongly in the ability to demystify and assuage the fear that surrounds death in our culture and to foster safe passage for the dying, as well as to aid the families and loved ones through grief and bereavement.As a visual artist and storyteller, Karen acquired a multitude of skills throughout her career that unlocked a deep passion for the healing power of visual and auditory perception on human consciousness. She integrated these strengths and resources into tools to bring aid and comfort for those imminently facing their mortality. Working with somatic and sensory awareness, Karen utilizes visual, sound and meditation therapy, personalized guided imagery, and commemoration of the sacred in the form of ritual, legacy and memory work, in order to bring comfort - physically, emotionally, spiritually to celebrate and commemorate the life of the individual. In addition to her ongoing private practice, Karen is currently directing a feature film about living American artist Michelle Stuart, whose work also engages with the elemental and ineffable nature of existence.RESOURCES:Edgar Allan PoeErik EriksonExit strategy for dying (Karen's monthly newsletter)Omega Home NetworkAll...

Janine Durso spent 30 years inside pharmaceutical advertising shaping healthcare narratives before becoming a belief strategist and founder of The Believist. In November 2024, during a routine Zoom coaching session, she felt what she called a sharp, terrible pain in the right side of her head. Within hours she was in surgery for a ruptured brain aneurysm. She does not remember the ambulance, the ICU, or the first weeks that followed. She spent 5 weeks in intensive care, then 10 days relearning how to walk, calculate simple change, and manage basic cognition. Doctors later placed a stent and continue monitoring a second unruptured aneurysm.This episode traces the moment she told her husband something broke in my brain, the 14 days doctors called touch and go, and the slow mental rebuild that followed. It also examines insurance barriers that require 2 direct relatives with aneurysms before screening coverage, and why she now lobbies in Washington for change.RELATED LINKSJanine DursoThe BelievistBrain Aneurysm FoundationWhite Plains HospitalDr. Jared CooperFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Rebecca Benghiat holds a JD, passed the bar, and skipped corporate law to build mental health systems instead. She now serves as Chief of Staff and Head of Impact at Inner Foundation, where she helps direct capital toward emerging adults ages 18 to 30 and asks a hard question every day: Is this actually working?In this conversation, she dismantles the myth of easy fixes. She explains why mental health measurement resists clean metrics, why a PHQ 9 score starts a conversation but never finishes one, and why “scale” often flatters institutions more than it helps people. She breaks down how impact investing shapes care delivery, why schools need networked systems not slogans, and why friction might be developmentally necessary.The stakes are real. Vulnerable families navigate snake oil, glossy apps, and pay to play algorithms while carrying the burden of choice in crisis. Benghiat lives inside that complexity and refuses to simplify it.RELATED LINKSRebecca BenghiatInner FoundationAspen Ideas HealthThe Jed FoundationFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Jenna Skowronski, Dr. Shazli Khan, and Dr. Alix Barnes discuss the involvement of palliative care throughout the heart failure spectrum with Dr. Sarah Chuzi. Audio editing for this episode was performed by CardioNerds Intern, Dr. Julia Marques Fernandes. In this episode, we discuss utilizing palliative care principles while caring for patients with heart failure, particularly those being considered for advanced therapies. We emphasize utilization of communication frameworks when discussing prognosis and making decisions on pursuing therapies such as palliative inotropes, left ventricular assist devices (LVADs), and heart transplant. Additionally, we discuss when to involve specialty palliative care services. Finally, we highlight the difference between palliative care and hospice and how to help patients navigate the transition from life-prolonging care to hospice. Dr. Jenna Skowronski is the Chair for the CardioNerds Heart Failure Council. Dr. Jenna Skowronski and Dr. Shazli Khan are the Co-chairs for the CardioNerds Advanced Heart Failure Therapies Series. Dr. Alix Barnes is the CardioNerds FIT Ambassador at UPMC and member of the CardioNerds Critical Care Cardiology Council. Enjoy this Circulation Paths to Discovery article to learn more about the CardioNerds mission and journey. US Cardiology Review is now the official journal of CardioNerds! Submit your manuscripts here. CardioNerds Heart Success Series PageCardioNerds Episode PageCardioNerds AcademyCardionerds Healy Honor Roll CardioNerds Journal ClubSubscribe to The Heartbeat Newsletter!Check out CardioNerds SWAG!Become a CardioNerds Patron! Pearls Primary palliative care is care provided by a clinician that is not a palliative care specialist, such as a heart failure clinician having a conversation with a patient about their goals and values in clinic.  Taking time to get to know a patient as an individual and learning their goals and values prior to diving into conversations about prognosis and change in treatment plan facilitates more effective goals of care discussions.   Utilizing and practicing a communication framework can improve our skills at goals of care discussions.   Palliative inotropes should be reserved for patients experiencing symptomatic benefit from the therapy that outweighs the associated risks including arrhythmias and infections. The burden of managing these therapies at home should also be considered. Partnerships between cardiologists and hospice agencies can improve the experience for patients with heart failure who enroll in hospice. Cardiologists can continue to see their patients even after hospice enrollment and help with symptom management.   Notes Notes: Notes drafted by Dr. Barnes. 1. What is the difference between primary palliative care and specialty palliative care? Primary palliative care is the delivery of palliative care services that any clinician can deliver. This includes aligning treatment with a patient's goals and basic symptom management. For heart failure patients, symptom management can include cardiac symptoms such as dyspnea and chest pain as well as managing comorbid mood disorders such as adjustment disorder, depression, and anxiety. Advanced palliative care skills take additional training and time to develop. These include leading a difficult family meeting, managing symptoms that are not controlled with standard therapies and responding to emotional and spiritual distress. When these situations are encountered, referral to a specialty palliative care service should be considered. 1 2. How is palliative care integrated throughout the disease trajectory of a patient with heart failure? Heart failure clinicians deliver primary palliative care when assessing a patient's preferences, goals and values or managing symptoms. As a patient's disease progresses, the heart failure team also engages in primary palliative care when delivering news about prognosis. When advanced therapies are being considered, utilization of shared decision-making (SDM) should be employed (see question 3 for further discussion on SDM). For patients being considered for LVAD, the Centers for Medicare and Medicaid Services (CMS) mandates that patients are seen by a palliative care specialist prior to implantation. 2 Despite this, there remains variability in how institutions involve specialty palliative care in this decision-making process. Thoughtful consideration of what palliative care resources are available at your institution should guide how best to integrate specialty palliative care teams into the LVAD decision tree. One example of a model for meeting this mandate is having a small team of heart failure clinicians with additional palliative care training meet all patient's being evaluate for LVAD. 3. What is shared decision-making (SDM) and how is it utilized when evaluating a patient for advanced therapies? SDM is a collaborative process where patients and clinicians work together to make medical decisions that are aligned with a patient's goals and values.3 There are a variety of communication frameworks that can be used to engage in effective SDM. One framework is the Serious Illness Conversation guide. This is an evidenced based framework that can be used to deliver the news about a patient's current condition and then assess their goals, values and preferences for next steps in their treatment plan.4  This framework can be helpful when discussing prognosis prior to introducing the idea of an evaluation for advanced therapies. REMAP is a second commonly used framework which stands for Reframe, Expect Emotion, Map What's Important, Align, and Plan.5 This framework is similarly helpful when starting a discussion about advanced therapies with a patient. Both frameworks prioritize learning about a patient's goals, values, and preferences prior to making a recommendation for a treatment plan. Listening more than speaking and accepting that a patient and their family may choose a path that is different than what you personally might choose for yourself or your loved ones are vital pillars to engaging in these conversations effectively. When discussing LVAD, it is important to avoid framing the decision as “LVAD or no LVAD,” rather LVAD versus best supportive care. The “Best Case, Worst Case” framework is an effective way to create choice awareness for patients when they are faced with making this decision. This is a way to discuss both the best outcomes after LVAD implantation as well as the potential complications so a patient is better able to understand the full spectrum of possible outcomes. 6 4. How do you select which patients would benefit from home inotrope therapy? There is no data demonstrating a survival benefit with use of palliative inotropes. There may be subsets of patients who derive a survival benefit, such as patients whose renal function worsens when the agent is withdrawn, however there is no concrete data proving this. 7 Therefore, the benefit of home inotrope therapy should be based on if the patient derives symptomatic benefit from these agents. Additionally, risks of the therapy such as arrhythmias and infection as well as the burden of managing these therapies at home should also be weighed in the decision.8 Life expectancy for patients being initiated on palliative inotropes likely ranges from 6 to 9 months. Given this prognosis, concordant palliative care efforts should be intensified when starting patients on these agents. This can either be through involvement in specialty palliative care or increasing primary palliative care interventions. 9 5. How do you determine if a patient would be a candidate for hospice and how do you discuss hospice with patients and their families? Hospice is a comprehensive program that provides supportive care to patients at end of life. This includes a team of physicians, nurses, aids, social workers and chaplains that can deliver care in the home, at a nursing facility, or in an inpatient hospice facility. 10 Patients with a prognosis of 6 months or less can qualify for hospice services. Even if a patient qualifies for hospice based on their prognosis, it is important to assess if a patient's goals and values align with hospice. Introducing hospice to patients who still desire life prolonging care can cause mistrust between the patient and their health care team. When introducing hospice, it is helpful to describe the services hospice offers in addition to naming the service as some patients may have a negative connotation with the word “hospice.” 6. How can cardiologists partner with hospice agencies to provide better care for these patients? Heart failure specialists can continue to see their patients even after they enroll in hospice. Partnering in hospice agencies in this way can help improve symptom management for patients while also allowing them to continue meaningful relationships with providers with whom they've developed a longitudinal relationship with. Guideline directed medical therapy (GDMT) and diuretics can be continued while enrolled in hospice as long as they are offering symptomatic benefit. Heart failure specialists can help with adjusting GDMT to cheaper formulations, such as exchanging angiotensin receptor-neprilysin inhibitors (ANRIs) for angiotensin receptor blockers (ARBs). Many hospice agencies cannot accept patients receiving palliative inotropes due to the resources and training required to safely care for these patients. Understanding what hospice agencies in your area can and cannot support allows heart failure specialists to have informed discussions with patients and make appropriate referrals. References Quill TE, Abernethy AP. Generalist plus Specialist Palliative Care — Creating a More Sustainable Model. N Engl J Med. 2013;368(13):1173-1175. doi:10.1056/NEJMp1215620. https://www.nejm.org/doi/full/10.1056/NEJMp1215620 Ventricular Assist Devices for Bridge-to-Transplant and Destination Therapy. Published online August 1, 2013. https://www.cms.gov/medicare-coverage-database/view/ncacal-decision-memo.aspx?proposed=Y&NCAId=268 Godfrey S, Barnes A, Gao J, Katz JN, Chuzi S. Shared Decision-making in Palliative and End‑of‑life Care in the Cardiac Intensive Care Unit. US Cardiol Rev. 2024;18:e13. doi:10.15420/usc.2024.03. https://pubmed.ncbi.nlm.nih.gov/39494405/ Baxter R, Pusa S, Andersson S, Fromme EK, Paladino J, Sandgren A. Core elements of serious illness conversations: an integrative systematic review. BMJ Support Palliat Care. 2024;14(e3):e2268-e2279. doi:10.1136/spcare-2023-004163. https://pmc.ncbi.nlm.nih.gov/articles/PMC11671901/ Childers JW, Back AL, Tulsky JA, Arnold RM. REMAP: A Framework for Goals of Care Conversations. J Oncol Pract. 2017;13(10):e844-e850. doi:10.1200/JOP.2016.018796. https://ascopubs.org/doi/10.1200/JOP.2016.018796 Kruser JM, Nabozny MJ, Steffens NM, et al. “Best Case/Worst Case”: Qualitative Evaluation of a Novel Communication Tool for Difficult in-the-Moment Surgical Decisions. J Am Geriatr Soc. 2015;63(9):1805-1811. doi:10.1111/jgs.13615. https://pmc.ncbi.nlm.nih.gov/articles/PMC4747100/ Tolia S, Khan M, Khan S, et al. Mortality and long-term outcomes of palliative inotropes in ischemic and non-ischemic cardiomyopathy. Eur Heart J.  2021;42(Supplement_1):ehab724.0915. doi:10.1093/eurheartj/ehab724.0915. https://academic.oup.com/eurheartj/article/42/Supplement_1/ehab724.0915/6392681 Chuzi S, Allen LA, Dunlay SM, Warraich HJ. Palliative Inotrope Therapy: A Narrative Review. JAMA Cardiol. 2019;4(8):815. doi:10.1001/jamacardio.2019.2081. https://jamanetwork.com/journals/jamacardiology/article-abstract/2737414#google_vignette Chuzi S, Gao J, Thariath J, et al. Characteristics and Outcomes of Palliative Continuous Intravenous Inotrope Support Among Medicare Beneficiaries With Heart Failure. J Am Heart Assoc. 2025;14(14):e039397. doi:10.1161/JAHA.124.039397. https://www.ahajournals.org/doi/10.1161/JAHA.124.039397 What is hospice? Published online September 24, 2024. https://hospicefoundation.org/what-is-hospice/

Rural populations in the United States face unique healthcare challenges. These communities tend to be older, have higher mortality rates, and experience higher rates of chronic conditions and physical disabilities compared to urban populations. Despite the increased need for palliative care in rural areas, access remains alarmingly limited. Even in hospital settings, where palliative care programs are more common in urban areas, only 35% of rural hospitals report having such programs, compared to 81% of urban hospitals. In this week's podcast, we explore the challenges and opportunities of delivering palliative care in rural communities with our esteemed guests Karl Bezak, Jeanie Youngwerth, Adie Goldberg, and Gregg Vandekieft. We begin by discussing what inspired each of them to focus on rural palliative care. From there, we dive into what rural palliative care looks like and examine how it differs from care provided in urban settings. Our guests also share insights into the challenges of delivering this care in resource-limited rural environments and explore innovative strategies to ensure patients and families receive the support they need (like providing remote fellowship training for docs living in rural areas!). We also tackle the role of telemedicine in rural palliative care, both the good part, connecting patients in remote areas with specialists who might otherwise be unavailable, and the bad part, the huge digital divide seen in rural areas.  Join us for what I thought were some valuable insights our guests brought on how we can better serve rural populations and create a more equitable system for palliative care delivery. And if you want to learn more, check out some of these resources: University of Colorado's Community Hospice and Palliative Medicine (CHPM) Fellowship, which allows mid-career providers to obtain training while continuing to live and work in their community supported through online and distance learning technology Master of Science in Palliative Care Program: Master of Science Degree The Rural Health Information Hub's Rural Hospice and Palliative Care Overview  Stratis Health's Rural Community-based Palliative Care resource center The Washington Rural Palliative Care Initiative website CAPC's Safety-Net and Rural Care website         The paper validating the AI Algorithm used to identify patient in rural ED for the TeleGOC Pause Model at UPMC (SafeNET)  A Google Site where Karl is hosting their most recent data related to the TeleGOC Pause Model 

At age 12, Dr. Chrystal Starbird stood by a pond after turning her mother in to the police. She watched tadpoles and fish move beneath the surface and found a strange kind of order. Science became her refuge long before it became her career. Years later, she built that refuge into a profession. She now serves as an Assistant Professor at the University of North Carolina, studies structural biology tied to cancer and Alzheimer's disease, and won Cell's first Rising Black Scientist Award in 2020. On paper, she fits the model of success. In practice, she had to fight for basic access at every stage.Conference travel required upfront cash she did not have. Networking favored pedigree over merit. Mentorship often depended on who knew your name in the room. Chrystal learned those rules, then chose to break them open for others.Oliver Bogler examines what Chrystal calls the advocacy tax. She has delivered over 70 invited talks. Nearly 40 percent focus on equity, mentorship, and policy. Academic reward systems do not count that labor toward tenure. She still does it.Through her leadership at the Life Science Editors Foundation, Chrystal helped build the JEDI program, which pairs underrepresented scientists with editors from journals like Cell and Nature. The program has supported over 100 awardees with more than 1,000 hours of mentorship. This episode exposes how biomedical science rewards output while ignoring the work required to make the system accessible. It also shows what happens when the people most affected refuse to step back.RELATED LINKSDr. Chrystal StarbirdStarbird LabLife Science Editors FoundationJEDI ProgramFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

At 19, Jansher Naim went from sharp stomach pain to a Stage 4 fibrolamellar diagnosis that few doctors see and even fewer young adults survive. He pushed through 41 rounds of chemotherapy, a Whipple surgery, and months of isolation while his friends kept moving through normal college life. In the studio, Jansher sits beside his mother Sadia Siddiqui, who refused early defeat and helped overhaul his care team when the first plan offered little optimism. Now a Computer Science student at Columbia, Jansher lives in the uneasy space between remission and risk, managing fertility decisions, travel for ongoing care, and the strange pressure to look fine at 22. Together they describe what it takes to grow up fast inside a system that rarely knows what to do with young adults who refuse to disappear.RELATED LINKSJansher NaimSadia SiddiquiFibroFighters FoundationColumbia UniversityFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.