New Learning Resource — Available for All Hospice Volunteers (2020)

New Learning Resource — Available for All Hospice Volunteers (2020)

Prepared by ICASIT intern Uhunoma Edamwen in cooperation with Capital Caring Health, one of the largest nonprofit hospice/palliative care organizations in the United States

Cultural Diversity
Volunteering with Patients in a Facility Setting
Death and Dying
Family Dynamics/Communication
Patient Care, Symptom Management, Pain Control
Medicare/Medicaid Benefit
Spiritual Care & Spiritual Diversity
Grief and Loss
Boundaries and Self-Care
Disease Information and Diagnosis
General Hospice Information
Providing Virtual Support to Patients and Families
Virtual Support for Volunteers



Cultural Diversity

Allied Health Resources: Cultural Competency Resources
A digital list of resources for further education on building cultural competency.

What is culturally competent healthcare?
A video on the positive impact of culturally competent health care providers.

Are You Practicing Cultural Humility? – The Key to Success in Cultural Competence
A guideline for how to successfully practice cultural humility, a key part of cultural competence

Culturally Diverse Communities and Palliative and End-of-Life Care
A fact sheet by the American Psychological Association on culturally diverse communities and end of life care.

Providing Culturally Sensitive Pediatric Palliative Care
A resource on how to better provide culturally competent treatment for children undergoing palliative care.

Cultural Competence
A series of training videos on culturally competent health care.

Cultural Sensitivity & Diversity
A training video on cultural sensitivity.

How To Care For Patients From Different Cultures
A resource on tips to take care of patients from different cultures.

Honoring Cultural Diversity at the End of Life
Social Work Today on cultural competency and cultural considerations for end of life care.

Cultural Considerations in End-of-Life Care
National Pace Association’s training for cultural sensitivity in end of life care.

Cultural Influences on End-Of-Life Care
The cultural influences on hospice care and a resource for those experiencing it to manage their response.

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What is Dementia?
A training video defining dementia and its effect on daily life.

Working with Dementia – series of 6 training videos
A series of modules for hospice volunteers that describes how to care for people with dementia, including videos exploring potential scenarios.

What is Alzheimer’s?
A video that analyzes how Alzheimer’s Disease affects the brain and the different stages associated with the illness.

Communication with Dementia
Tips for a caretaker to better communicate with an individual diagnosed with Dementia.

Communication and Alzheimer’s
Talking points for communicating with an individual suffering from Alzheimer’s Disease at various stages.

10 Warning Signs of Alzheimer’s
The Alzheimer’s Association has developed a checklist that can help identify if episodes of memory loss are within the “normal range” or something more serious.

Dementia Factsheet
A factsheet by the Alzheimer’s Society outlining the symptoms and causes of Dementia.

Caregiver’s Guide to Understanding Dementia Behaviors
The Family Caregivers Alliance shares information on tips for communicating with someone diagnosed with Dementia and what common behaviors to expect.

Training the Volunteers
This packet provides an informational training for volunteers to make sure they are knowledgeable about all aspects of Dementia and Alzheimer’s Disease.

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Volunteering with Patients in a Facility Setting

Time…To Help Others
A video of Hospice Volunteers sharing their personal experiences to inspire volunteer opportunities.

Volunteers of Hospice
A documentary that tells the stories of hospice volunteers to encourage a greater understanding of hospice.

Hospice Volunteer Video
A video discussing how volunteers can support patients and families.

Hospice Volunteer Roles
A video that explains the various ways Hospice Volunteers directly and indirectly support patients.

What Kinds of Things Do Hospice Volunteers Do?
An article that explains different types of volunteer roles and what each position entails.

Social Activities
Working with patients to stimulate memory, focus attention, and provide social interaction for people with advanced dementia.

Become a Volunteer
Volunteers fill roles that range from direct contact with patients to providing clerical and fundraising support for the organization.

Being a Hospice Volunteer
A published article that summarizes the experiences of a hospice volunteer.

Hospice Volunteers: Helping People Live
Hospice Volunteers provide companionship to people living with serious illness and help family caregivers in a variety of ways.

Myths & Facts About Hospice Care
Clarifying a series of myths surrounding hospice care.

Self-Study Program for Hospice Employees
This manual addresses core concepts and topics that are known to assist someone in their work within the hospice and palliative care.

Capital Caring Health Volunteer Spotlight
A video by Capital Caring Health on volunteering, the impactful role volunteers fulfill, and reflections on hospice volunteering.

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Death and Dying

Hospice Volunteers – Bereavement
A volunteer describes the reward of helping people get through the difficult experiences of end-of-life.

A guide to understanding end-of-life signs & symptoms
An educational guide to help caregivers understand the physical changes of the end-of-life process, including the emotional and spiritual changes.

Guide to the Dying Process
Information to help a caregiver prepare and anticipate symptoms that are indicative of death.

Preparing for Death – A Guide for Caregivers
An article by Victoria Hospice about near-death symptoms and how to better accommodate the patient.

Helping Children Cope with Death and Dying
Resources for adults to effectively communicate the implications of death to a child.

The Dying Process: A Guide for Caregivers
This guide discusses both the physical symptoms of dying and the psychological issues that accompany the dying process.

Narratives of Hospice Volunteers: Perspectives on Death and Dying
Their unique experiences illustrate the effect that death can have on a person’s life.

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Family Dynamics/Communication

Care Demands by Families and Family Healthcare Proxies
A dilemma for palliative care and hospice care staff.

Dealing with Families in Conflict
Hospice Staff roles in protecting patient and family interests.

Your Conversation Starter Kit
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care.

Your Conversation Starter Kit – Alzheimer’s Disease
This resource, although created for families, will help caregivers better understand family dynamics as they relate to Alzheimer’s and end-of-life.

Cultural Influences on End-Of-Life Care
This extensive pamphlet outlines just how much culture influences a person’s end-of-life care.

Gather Round: Understanding How Culture Frames End-of-Life Choices for Patients and Families
The purpose of this information is to point to ways these professionals can work more collaboratively with patients and families.

Hospice is a Family Affair
An article on how interconnected family is with hospice care.

Hospice: What You Need to Know About End-of-Life Care
An AARP article on hospice care, the role of family caregivers, and

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Patient Care, Symptom Management, Pain Control

Principles of Hospice and Palliative Care
The principles of hospice palliative care unite the care philosophies and goals of the World Health Organization.

Hospice Pain Management
A blog post about care principles and pain management being the primary goal of hospice

Understanding Palliative/Supportive Care
This fact sheet summarizes the key features of care and clarifies some misconceptions that prevent people from considering palliative care.

Hospice Caregiver Guide
This resource introduces the various methods and guidelines for volunteers to ensure a high standard of care to all patients.

Hospice Caregivers’ Experiences with Pain Management
Patients often say barriers to effective pain management include communication problems with providers. This article outlines some of those experiences.

Palliative Care Methods for Controlling Pain
A University of Rochester Medical Center resource for ways to manage pain and palliative care.

Hospice: Understanding and Caring for Dyspnea
An article on with information on dyspnea or shortness of breath.

Managing Common Symptoms
An article on common symptoms experienced by hospice patients, and how to manage them.

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Medicare/Medicaid Benefit

Medicare – Alzheimer’s Association
A link to the Alzheimer’s Association that provides all important information regarding Medicare.

Medicare Hospice Benefits
This official government document includes information about the Medicare Hospice Benefit.

A power point presentation outlining the Medicare Conditions of Participation

Hospice Toolkit
This booklet discusses the Medicaid hospice benefit and the importance of providing documentation to support medical necessity and proper level of care.

The Medicare Hospice Benefit
A factsheet with a brief summary of the Medicare Hospice Benefit.

Medicare Hospice Benefit – NHPCO
The National Hospice and Pallitative Care Organization’s fact resource on the Medicare Hospice Benefit.

Medicaid and Medicare Hospice Coverage
Another resource on Medicare and Medicaid’s coverage of Hospice.

An Overview of the Medicaid Hospice Benefit
A fact sheet by the Cener for Medicare & Medicaid Services (CMS).

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Spiritual Care & Spiritual Diversity

Massage Therapy and the Hospice Patient
A massage therapist distinguishing the blurry lines of spiritual care in hospice.

Practicing Mindfulness to Relieve Stress
Introducing alternative and spiritual methods to relieve stress, for both patient and caregiver.

Mindfulness in Hospice and Palliative Care with Ellen Langer, PhD
This session will help hospice and palliative care professionals understand and develop a practice of mindfulness, ensuring that they provide care with an interdisciplinary approach.

Catholic Teaching on End-of-Life Decision-Making
A Catholic guide to the complex challenges of end-of-life decision-making.

Culturally competent care at the end of life: a Hindu perspective
This article outlines the role of the Hindu religion at the end- of- life care and beliefs.

Cultural considerations for end of life care
Hospice is an important aspect of palliative care and this resource summarizes the role of different religions on giving care.

Spiritually Sensitive Hospice Care
Social Work Today on how to approach spiritual needs at the end of life.

Providing spiritual care
A resource for professionals to better understand spiritual care in the palliative care context, and the changing spiritual needs of someone in end of life care.

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Grief and Loss

Grief: Coping with the loss of your loved one
An article from the American Psychological Association on coping with death of loved ones.

Grief and Loss Resources
Resources from the American Counseling Association on grief and loss.

Bereavement and Grief
An insightful article from Mental Health America on coping with loss, dealing with grief, etc.

Ted Talks about Grief
6 videos on coping with grief from a variety of perspectives.

Understanding Grief
This short video features input from professionals and experts in the field of bereavement support.

How Grief Feels / Robbie Stamp / TEDxLondon
Robbie talks about the experience of grief, how it changes our perception of the world, and how we can support those who are grieving.

Types of Grief and Loss
Explaining different types of grief.

Handbook for Mortals

An online edition of this book serves as an authoritative consumer guide to end-of-life care.

Hospice Foundation of America shares resources on a wide variety of topics related to hospice care.

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Boundaries and Self-Care

Self-Care and Boundaries
The narrator educates on ways to recognize boundaries and how to ensure that caregivers take time to care for themselves.

Boundaries and Self-Care
An expert addresses the pitfalls of getting “too close” to the patient as well as strategies for self-care.

A Delicate Balance
Explaining self-care for the hospice professional.

Managing Stress for Hospice Professionals
American Hospice shares various ways to maintain boundaries and control levels of stress.

A Self-Care Plan for Hospice Workers
This reflection recalls important tools for maintaining the balance between the output and input of energy in a caregiver’s professional and personal life.

Caregiver Wellness
It is important for caregivers to consistently be aware of their own state of well-being and this resource serves as a guide to maintaining that healthy balance.

Coaching Professional Boundaries for Caregivers
Guidelines for healthy relationships between patients and caregivers is outlined in this article.

Great Tips for Caregivers
An accumulation of quick tips for caregivers to serve as a reminder to prioritize self-care.

Understanding Professional Boundaries for Hospice Volunteers
A self-study of boundaries to maintain a healthy experience as a hospice volunteer.

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Disease Information and Diagnosis

Heart Failure
The National Institute of Health shares all aspects of information related to heart failure, a disease common among hospice patients.

Symptoms and Diagnosis – ALS
Basic information about ALS to help volunteers be more well-rounded in their knowledge.

Common Hospice Medications
This article details the common medications prescribed to hospice patients and their individual purposes.

Keys to Caregiving
The American Parkinson Disease Association providing information on topics related to Parkinson’s Disease.

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General Hospice Information

Lessons from a Hospice Nurse: Alia Indrawan (Tedx Talks)
A healing practitioner who previously worked as a Hospice Nurse, helping people with a terminal illness die gracefully.

Resources for Healthcare Professionals
Virtual training and courses related to end of life conversations and care.

Hospice Foundation of America Video
A video from the Hospice Foundation to normalize hospice and show the benefits of this type of care.

Starting the Conversation about End-of-Life Care
How to address hospice and end-of-life care to ensure all options are discussed.

The Conversation Project
An organization that is dedicated to helping people talk about their wishes for end-of-life care.

What are Palliative Care and Hospice Care?
The National Institute on Aging shares information to distinguish between palliative and hospice care.

FAQ’s for New Hospice Volunteers
Resources to help prepare hospice volunteers to provide excellent patient care.

Understanding Hospice
This factsheet answers common questions about hospice.

An informational article about the history, philosophy, and other general resources related to hospice care.

What is Hospice?
The Hospice Foundation of America on what Hospice is, health coverage, and general information on how this works.

Is There Such A Thing As A Good Death?
This article addresses questions and misconceptions surrounding hospice care.

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Providing Virtual Support to Patients and Families

Coronavirus Resources for Home Care & Hospice
Amidst the coronavirus pandemic, this website by the National Association for Home Care & Hospice provides tele health info resources.

Your Everyday Guide to Telemedicine
A guide to telemedicine and what’s needed for successful virtual visits.

COVID-19: Telehealth and Virtual Care  Best Practices
The American Hospital Association’s resource on best practices in telehealth and virtual care.

Using Telehealth to Care for Patients During the COVID-19 Pandemic
Telemedicine and virtual care information for patients during the COVID-19 Pandemic by AAFP.

The National Hospice and Palliative Care Organization’s resource on telehealth in end of life care.

Virtual Care and Comfort: How Telehospice Helps Patients and Caregivers
How telehospice is beneficial for patients and caregivers.

Telemedicine – making palliative care better | Trina Diner | TEDxThunderBay
A TedTalk on how telemedicine improves palliative care.

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Virtual Support for Volunteers

8 Tips for Caregivers
Tips for caregivers.

Hospice Volunteering
A blog about volunteering in hospice care.

The Role of Volunteers in Hospice Care
A YouTube video by Bon Secours St. Francis Health System.

 Volunteering In Hospice 
An article on the support hospice volunteers give.

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