Increasing Collaboration Between Hospice Professionals and Families
Judy Daniels, MSN, RN, AGPCNP-BC | Updated/Verified: July 7, 2025
Hospice care can feel overwhelming or unfamiliar for many people, but there are excellent resources available to help individuals, families, and communities learn, prepare, and support one another. The resources shared above offer practical guidance on advance care planning, legal documents like advance directives, and understanding the differences between hospice and palliative care.
For those coping with grief or caring for someone at the end of life, there are podcasts, videos, books, and support networks designed to provide comfort and education. Whether you’re a caregiver, family member, or community member wanting to help, these tools offer compassionate information and real-world advice to guide you through the hospice journey.
For Nurses and Aspiring Nurses:
Hospice nursing and palliative nursing require both clinical skill and emotional strength. Whether you're studying nursing or already practicing, these resources can help deepen your understanding of patient-centered care, symptom management, and how to support both patients and families through the dying process with dignity and compassion. Nurses play a critical role in hospice care, and learning from experienced voices, research, and patient stories helps prepare you for this meaningful and rewarding field. Learn more about the differences in ACNP vs AGNP specializations.
Organizations
NHPCO.org
The National Hospice and Palliative Care Organization promotes high-quality hospice care, providing advocacy, education, and resources for providers and families across the U.S.
HospiceFoundation.org
The Hospice Foundation of America educates professionals and the public about hospice, grief, and end-of-life issues through programs, resources, and support materials.
OregonHospice.org
Oregon Hospice & Palliative Care Association supports member programs, advancing end-of-life care quality, access, and public understanding throughout the state of Oregon.
NAHC.org
The National Association for Home Care & Hospice represents providers of home care and hospice services, advocating for policy, research, and quality standards.
AllianceforCareatHome.org
This alliance promotes patient-centered care at home, focusing on innovative policies and care models that include hospice and palliative services.
AAHPM.org
The American Academy of Hospice and Palliative Medicine provides education, research, and advocacy for physicians specializing in hospice and palliative care.
CAPC.org (Alliance Page)
CAPC collaborates with organizations to improve serious illness care at home, supporting hospice through education and interdisciplinary care integration.
Medicare Hospice Compare
Medicare's Care Compare tool helps families find and evaluate hospice providers based on quality metrics and patient experience ratings.
NPCRC.org
The National Palliative Care Research Center advances research to improve palliative and hospice care quality for patients with serious illness.
AdvancingExpertCare.org
The Hospice and Palliative Nurses Association educates and supports nursing professionals in delivering compassionate, expert hospice and palliative care.
NPHIHealth.org
The National Partnership for Healthcare and Hospice Innovation advances not-for-profit hospice agencies through collaboration, best practices, and community-based care initiatives.
Articles
Hospice vs Palliative care: A comprehensive review for primary care physician
Explores cultural, systemic, and provider-related barriers in hospice referrals, aiming to improve access and equity in end-of-life care for diverse populations.
The American Journal of Hospice and Palliative Medicine
The AJHPM publishes peer-reviewed research on hospice care practices, clinical innovations, symptom management, and interdisciplinary team approaches.
Research in Palliative Care
Johns Hopkins’ palliative care research focuses on quality of life, communication strategies, and advanced illness management to enhance hospice and serious illness care delivery.
End of Life, Hospice and Palliative Care
This JAMA collection features scholarly articles addressing hospice, end-of-life decisions, symptom control, and ethical dilemmas in palliative care, offering evidence-based clinical guidance.
Hospital and Palliative Care
The National Institute on Aging provides consumer-focused education on hospice and palliative care, covering eligibility, services, and differences between supportive care types.
Designing Research With Hospice and Palliative Care Populations
This article examines caregivers' experiences in hospice settings, highlighting emotional support, communication, and the importance of compassionate end-of-life care.
Gaps in Hospice and Palliative Care Research: A Scoping Review of the North American Literature
A research study assessing quality indicators and caregiver burden in hospice care, providing insights for improving services for terminally ill patients and families.
Development of Hospice and Palliative Care in the United States
Analyzes how physicians make decisions about hospice referrals, revealing patterns, challenges, and factors influencing when terminally ill patients are transitioned into hospice care.
An overview of hospice and palliative care nursing models and theories
Discusses pediatric hospice care, emphasizing family-centered approaches, symptom management, and emotional support in terminal childhood illnesses.
Hospice patients' views on research in palliative care
Explores the integration of palliative care principles in general medicine, enhancing hospice services through early intervention and multidisciplinary collaboration.
Hospice and Palliative Care: An Overview
A comprehensive review of hospice and palliative care models, evaluating policy, clinical outcomes, and innovations aimed at improving end-of-life experiences.
Preparing the Home
Starting Hospice: What to Expect
Outlines the emotional and logistical steps involved in starting hospice care, including how to prepare mentally, medically, and physically for at-home services.
Prepare Your Home for Hospice
Covers key considerations for setting up a safe, comfortable environment for hospice patients at home, including supplies, equipment, and family roles.
Personal Hygiene Caregiver Tips for At-Home Hospice Patients
Offers practical advice for caregivers to maintain dignity and comfort through hygiene routines, addressing bathing, oral care, and skin health in hospice settings.
How to Prepare a Home for Hospice
Discusses setting up hospice equipment, ensuring safety, and emotional readiness, helping families create a calm and functional caregiving environment.
Preparing for Home Hospice Care
Provides a checklist of preparations—both physical and emotional—before home hospice begins, including communication with staff and support for caregivers.
Preparing for Hospice
Explains how to emotionally and practically get ready for hospice, from coordinating with healthcare providers to creating a peaceful home setting.
Hospice Checklist
A practical checklist to assess hospice readiness, including signs it's time, necessary documents, and home adjustments to support comfort and care.
How to Best Prepare Your Patients for Hospice Care
Aimed at clinicians, this guide offers strategies for preparing patients and families for hospice care transitions, communication tips, and symptom management planning.
Preparing for a Loved One to Die at Home
Personal essay with guidance on the emotional journey and practical needs when preparing for home death, including hospice's role and family readiness.
A Caregiver Checklist: 5 Things to Prepare When Caring for a Loved One at Home
Outlines five essential steps caregivers should take to prepare for home hospice, including legal documents, medication management, and emotional support planning.
Hospice Nursing Resources
Hospice and Palliative Care Nursing
A clinical resource hub offering articles, guidelines, and continuing education for nurses providing hospice and palliative care across diverse settings and patient populations.
Resources – NHPCO
Provides tools, fact sheets, and guides for patients, caregivers, and providers focused on quality hospice care, grief support, and advance care planning.
Hospice Educational Resources – CMS
Centers for Medicare & Medicaid Services resource center offering hospice billing guidelines, compliance training, and policy updates for providers and healthcare administrators.
End-of-Life Care Resources – Marquette University
Educational and clinical tools for nursing students and professionals addressing end-of-life decision-making, communication, cultural competence, and hospice care best practices.
Advancing Expert Care – HPNA
The Hospice and Palliative Nurses Association supports evidence-based practice, certification, and advocacy to elevate expert nursing care in hospice and palliative settings.
ELNEC Resources – AACN
Offers palliative care curriculum and educational tools through the End-of-Life Nursing Education Consortium, enhancing hospice care knowledge for nursing faculty and clinicians.
Books
Nothing to Fear: Demystifying Death to Live More Fully
Dr. Andrew Steele explores death through personal experience and hospice work, helping readers face mortality openly to live with greater intention and peace.
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
Hospice nurses share powerful stories and insights into the emotional and spiritual needs of the dying, guiding caregivers through meaningful end-of-life communication.
After: A Doctor Explores What Near-Death Experiences Reveal about Life and Beyond
Dr. Bruce Greyson investigates near-death experiences, shedding light on consciousness, death, and what patients report at the edges of life in hospice contexts.
Palliative Care and Ethics
Explores ethical dilemmas in hospice and palliative care, offering frameworks for navigating end-of-life decisions with compassion, autonomy, and clinical integrity.
We Need to Talk: Conversations About Suffering, Hope, and the Things We Think We Can’t Say
A guide to open, compassionate dialogue around death and dying, offering tools for hospice teams, caregivers, and patients to talk about life's most brutal truths.
Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief
Psychotherapist Joanne Cacciatore offers support for grieving families, including those experiencing hospice deaths, with practices rooted in mindfulness and compassion.
The In-Between: Unforgettable Encounters During Life's Final Moments
A hospice nurse recounts profound, mysterious moments she's witnessed at the bedsides of dying patients, revealing spiritual insights from the threshold of life and death.
Being Mortal: Medicine and What Matters in the End
Atul Gawande challenges modern medicine's approach to aging and death, advocating for hospice and palliative care that honors dignity, purpose, and patient choice.
Finding Peace at the End of Life: A Death Doula's Guide for Families and Caregivers
A gentle, practical guide for navigating end-of-life care through the eyes of a death doula, supporting emotional and spiritual preparation in hospice settings.
Gone From My Sight: The Dying Experience
A widely used hospice booklet describes the physical and emotional stages of dying, helping families understand what to expect in a loved one's final days.
Podcasts
Voices of Hospice Leadership
Features insights from hospice leaders addressing policy, innovation, and best practices shaping end-of-life care, emphasizing leadership roles in improving hospice experiences nationwide.
NHPCO Podcast
Provides updates from the National Hospice and Palliative Care Organization, covering legislative changes, education, and professional development in hospice care delivery.
Ending Life Well: A podcast for carers
Guides caregivers through emotional, spiritual, and practical aspects of supporting someone nearing the end of life, with expert tips and lived experience.
Quality of Life
Hosted by Four Seasons Hospice, this podcast discusses person-centered care, grief, and hospice experiences to enhance end-of-life quality for patients and families.
The Heart of Hospice Podcast
Explores compassionate caregiving, hospice myths, grief, and advance care planning through stories and interviews, offering guidance for both professionals and family caregivers.
The Hospice Nursing Podcast
Targets hospice nurses with real-world tips, clinical guidance, and relatable stories to support their challenging, emotional, and deeply rewarding work in end-of-life care.
Caregiver SOS
Focuses on health, aging, and caregiving topics, including hospice, helping caregivers find support, resources, and strategies for navigating end-of-life care at home.
Grief Out Loud
Produced by The Dougy Center, this podcast offers heartfelt conversations around grief, loss, and the emotional aftermath of hospice deaths across all age groups.
Hospice Explained
A podcast demystifying hospice care for patients, caregivers, and providers, offering honest conversations and education about hospice services and the dying process.
Hospice Insights
Focuses on regulatory and legal matters affecting hospice providers, offering compliance tips and industry trends for administrators and clinical leaders in end-of-life care.
Videos
Palliative Care and Hospice Care: What is the difference?
Clarifies the distinction between hospice and palliative care using real-world scenarios to help families and professionals navigate appropriate care choices.
Understanding Hospice vs Palliative Care
Educational video detailing key differences between hospice and palliative services, helping viewers understand timing, goals, and options for seriously ill individuals.
Palliative care improves the quality of life of patients with life-threatening illness
Explores how palliative care enhances life for seriously ill patients by relieving symptoms and offering holistic support across the care continuum.
End of Life Palliative and Hospice Care
PBS segment shares stories from patients and caregivers, emphasizing the benefits of compassionate hospice and palliative care in preserving dignity at life's end.
What is Palliative Care – An Introduction for Patients and their Families
Straightforward introduction explaining palliative care principles, goals, and team roles for families considering supportive care options during serious illness or hospice transition.
Palliative and Hospice Care Across the Lifespan: Expert Q&A
Experts discuss palliative care for people of all ages, emphasizing developmental and cultural considerations when delivering hospice and end-of-life care.
Palliative Care: YOU Are a BRIDGE
Inspires healthcare providers to be the bridge between suffering and support through palliative and hospice care, using visual storytelling and powerful narration.
Hospice Nurse Julie
Popular hospice nurse shares real-life stories, tips, and compassionate advice through vlogs, normalizing death and hospice care for caregivers and families.
Palliative and Hospice Care: Nursing
Educational module breaking down hospice and palliative nursing care essentials, aimed at students and professionals learning about holistic, patient-centered end-of-life care.
Embracing End of Life: A Nurse’s Journey in Hospice and Palliative Care
A nurse shares her personal experience and calling in hospice and palliative care, highlighting compassion, communication, and dignity in end-of-life journeys.
Advance Directive Resources
Advance Care Planning: Advance Directives for Health Care
From the NIH, this guide explains the purpose of advance directives and how they empower patients to express care preferences, especially during hospice or end-of-life situations.
Understand and Complete Your Advance Directives
The Joint Commission offers step-by-step information to help individuals make informed decisions about healthcare preferences, essential for those considering or receiving hospice care.
Prepare for Your Care
An interactive site guiding users through creating advance directives and health care proxies, crucial tools for hospice readiness and clear communication with providers.
Living Wills and Advance Directives
Mayo Clinic resource explaining living wills and healthcare powers of attorney, supporting hospice patients and families in making thoughtful end-of-life decisions.
Free Printable Advance Directives
AARP provides downloadable, state-specific advance directive forms to help families document wishes before hospice care becomes necessary, ensuring decisions reflect personal values.
Advance Directives: Your Life, Your Decisions
This video explains the importance of advance directives in medical decision-making, empowering hospice patients and families to plan confidently and avoid uncertainty during crises.
Advance Care Planning: Start the Conversation
Encourages individuals to initiate meaningful discussions about end-of-life wishes with loved ones and healthcare providers—especially critical when considering hospice.
What Are Advance Directives?
The NHPCO outlines how advance directives fit into hospice care, helping families and patients align care with values and medical realities.
Advance Planning Resources
American Bar Association offers legal and ethical guidance on advance care planning, helping hospice-bound individuals protect autonomy and make informed decisions legally binding.
Advance Care Planning for Patients and Families
Stanford Medicine provides compassionate tools for families to explore, document, and communicate advance care plans in palliative and hospice contexts.
Grief and Self Care
When You Are Grieving
Hospice Foundation of America offers emotional support, articles, and videos for those navigating grief after a hospice death, emphasizing healing and reflection.
Grief Resources – Hospice of the Valley
A rich hub of articles, support groups, and workshops to help families cope with loss, honoring the emotional toll of hospice bereavement.
Coping with Grief: Resources for Families After Hospice
Kara provides compassionate grief support tailored for families who have experienced a hospice death, with a focus on processing pain and restoring hope.
Self-Care for Caregivers
Practical tips and reflective tools from the Hospice Foundation to help caregivers manage stress, avoid burnout, and prioritize wellness during hospice journeys.
Self-Care During Grief
3HC offers a gentle guide to managing grief through self-care strategies like journaling, mindfulness, and setting boundaries after losing a loved one in hospice.
Grief and Loss Support Resources
Curated links to national and local grief services that support individuals adjusting to life after a hospice experience, including children, teens, and adults.
Strategies for Self-Care While Grieving
HCRRV shares accessible strategies for navigating grief after hospice, including social connection, rest, and finding purpose during mourning.
Fair Use Statement: Please share our content for editorial or discussion purposes. Please link back to this page and give proper credit to NursePractitionerOnline.com.