The following links are referenced in many of the articles and are presented here as an overall resource section for you to pursue for your enlightenment. Some links lead to Amazon for book suggestions; you are not obligated to purchase anything.
Table of Contents
Starting Hospice Services
Top 30 FAQs About Hospice: Everything You Need to Know
Understanding Hospice Care: Is it Too Early to Start Hospice?
What’s the process of getting your loved one on hospice service?
Picking a hospice agency to provide hospice services
National Hospice Locator and Medicare Hospice Compare
Advocacy Resources
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Natural Death With Dignity: Protecting Your Right To Refuse Medical Treatment
Death and Dying: A Good Exit Plan
Grieving Resources
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On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss
Finding Meaning: The Sixth Stage of Grief
It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand
Need Help Dealing with Grief? GriefShare Grief & Loss Support Groups Are Here for You
Caregiver Resources
CaringInfo – Caregiver support and much more!
Surviving Caregiving with Dignity, Love, and Kindness
Caregivers.com | Simplifying the Search for In-Home Care
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Compassionate Caregiving series
- When It’s Time for Hospice: A Compassionate Guide for Families and Caregivers
- Understanding Your Rights in Hospice Care: A Guide for Patients and Families
- Palliative Care vs Hospice Care: Making Informed Decisions
- The Caregiver’s Lifeline: Self-Care in End-of-Life Care
- Nourishing Hope: A Caregiver’s Guide to End-of-Life Nutrition
- Validation and Compassion: A Guide to Connecting with Terminally Ill Loved Ones
- Daily Hospice Care Planner: Organize, Communicate, and Provide Consistent Care
- Hospice Medication Handbook: A Caregiver’s Guide to Comfort Medications
- Dignity in Dying: A Thoughtful Approach to Voluntary Stopping Eating and Drinking
- Palliative Sedation: A Compassionate Approach
Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm
The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself
Everything Happens for a Reason: And Other Lies I’ve Loved
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
Coaching Resources
Hospice Buddy – run by Jamie Haberman, RN with extensive hospice experience.
Hospice Podcasts to learn more about Hospice
Code Status — Full Code (aka give CPR) and DNR resources
The dark side of CPR: Docs say it could be worse than death
Resuscitation is futile in terminally ill patients
CPR and terminal illness: What the public needs to know
CPR’s true survival rate is lower than many people think
Outcomes of In-Hospital CPR: Not as Rosy as Some May Say
CPR on Elderly: Long-term Side Effects of CPR – Potential Complications of CPR – Understanding the Risks – Consequences of Survival After Cardiac Arrest
Psychotherapeutic Considerations for Patients With Terminal Illness (PDF)
CPR Survival Rates – Development and Validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) Score to Predict Neurologically Intact Survival After In-Hospital Cardiopulmonary Resuscitation – Long-Term Outcomes in Elderly Survivors of In-Hospital Cardiac Arrest
Free Advance Directive Forms by State
Living wills and advance directives for medical decisions
Impact of Do-Not-Resuscitate Orders on Nursing Clinical Decision Making (PDF)
Dementia Resources
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Cancer Caregiving A-to-Z: An At-Home Guide for Patients and Families
Things I Wish I’d Known: Cancer Caregivers Speak Out
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Dementia Care Essentials series
Dementia Caregiver Essentials: Comprehensive Guide for Dementia Care (one book that contains the ten books below for less than one-third the price of all ten)
- Anger Management in Dementia: A Dementia Care Essentials
- CPAP and Oxygen for Dementia: A Dementia Care Essentials Guide
- Diabetes Care for Dementia: A Dementia Care Essentials Guide
- Hallucination Management for Dementia: A Dementia Care Essentials Guide
- Infection Awareness in Dementia Care: A Dementia Care Essentials Guide
- Medication Compliance for Dementia: A Dementia Care Essentials Guide
- Music Therapy for Dementia: A Dementia Care Essentials Guide
- Nutrition for Dementia: A Dementia Care Essentials Guide
- Placement for Dementia: A Dementia Care Essentials Guide
- Sundowning Management for Dementia: A Dementia Care Essentials Guide
Holistic Nurse: Skills for Excellence series
Dementia Home Care: How to Prepare Before, During, and After
Atypical Dementias: Understanding Mid-Life Language, Visual, Behavioral, and Cognitive Changes
Fading Reflection: Understanding the complexities of Dementia
Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers
Four Common Mistakes by Caregivers of Loved Ones with Dementia and What Do Differently (video)
Understanding Dementia (Alzheimer’s & Vascular & Frontotemporal & Lewy Body Dementia) (Video)
How Do I Know Which Dementia I’m Looking At? (Video)
Dementia Training material (Free)
Promoting Meaningful Relationships with Dementia Patients through Validation Therapy
Unlocking the Power of Validation Therapy in Compassionate End-of-Life Care
Validation Therapy: A Valuable Tool for Families and Healthcare Teams
Best Practices for Approaching Combative Dementia Patients
Dementia Insights: The Validation Method for Dementia Care
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As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.
How Do I Know You? Dementia at the End of Life
Sundown Dementia, Vascular Dementia and Lewy Body Dementia Explained
Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers
Dementia Care Companion: The Complete Handbook of Practical Care from Early to Late Stage
Death and Dying Resources
Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)
Preparing the patient, family, and caregivers for a “Good Death.”
Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)
The Dying Process and the End of Life
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Gone from My Sight: The Dying Experience
The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death
By Your Side, A Guide for Caring for the Dying at Home
Nutrition Resources
Understanding Changes in Diet Texture for the Terminally Ill
Managing Dysphagia for Comfort: A Guide for Families
Managing Aspiration Risks in Hospice Care: A Guide for Families
Understanding Nutrition Changes in Hospice: Nourishing Comfort and Peaceful End-of-Life Journey
Food and liquids during the dying process
Nourishing with Care: Feeding a Terminally Ill Loved One
Understanding Protein-Calorie Malnutrition: A Guide for Families
Is my loved one starving or being dehydrated to death?
Understanding the Role of IV Fluids at the End of Life
Tube Feeding on Hospice — Increased Risk of Your Loved One Suffering
Pain Assessment and Pain-Related Articles
Pain Assessment in Hospitalized Older Adults With Dementia and Delirium
Pain Assessment in Dementia – International Association for the Study of Pain (IASP)
Pain Assessment in People with Dementia: AJN The American Journal of Nursing
Pain Assessment in Advanced Dementia Scale (PAINAD) – MDCalc
Uncontrolled Pain and Risk for Depression and Behavioral Symptoms in Residents With Dementia
Pain Assessment and Pharmacologic Management
Adult Nonverbal Pain Scale (NVPS) Tool for pain assessment
Assessing pain in patients with cognitive impairment in acute care
Pain Assessment in Advanced Dementia Scale (PAINAD)
Pain Assessment in Non-Communicative Adult Palliative Care Patients
Pain Assessment in People with Dementia
Tools for Assessment of Pain in Nonverbal Older Adults with Dementia: A State-of-the-Science Review
Understanding the physiological effects of unrelieved pain
Untreated Pain, Narcotics Regulation, and Global Health Ideologies
Restlessness and Terminal Agitation
Managing Terminal Restlessness
Delirium vs Terminal Restlessness
Clues for terminal restlessness often missed for facility patients
Terminal Restlessness in the Completely Nonverbal Patient
Understanding Terminal Restlessness
Dementia Care for loved ones who are habitually restless
Understanding Serotonin Syndrome: A Comprehensive Guide
Shortness of Breath Management
Managing Shortness of Breath in Hospice Care: Non-Pharmacological Methods for Comfort
How to Use Pursed Lip Breathing to Manage Shortness of Breath
Hospice Nurses
Holistic Nurse: Skills for Excellence series
- Compassionate Care in Conflict: A Nurse’s Guide to Managing Combative Patients
- Dementia Staging Mastery: A Nurse’s Guide to Dementia Assessment
- The Nurse’s Guide to Motivational Interviewing: Empowering Patients to Make Lasting Health Changes
Empowering Excellence in Hospice: A Nurse’s Toolkit for Best Practices series
- Compliance-based, Eligibility Driven Hospice Documentation: Tips for Hospice Nurses
- Mastering Hospice Recertifications: A Comprehensive Guide for Nurses
- Mastering the Hospice Item Set: A Comprehensive Guide for Nurses and Managers
- Mastering Hospice Eligibility: An Essential Guide for RNs and Clinical Managers
- Whispers of Time: Understanding the End-of-Life Timeline
- Conversations at the End: Guiding Families Through Final Days
- Care Plans for Hospice Patients: A Comprehensive Guide
- Mindful Minutes: Time Management Secrets for Hospice Nursing Excellence
- Medication Reconciliation in Hospice Care: Maximizing Quality of Life
- HOPE in Practice: Implementing Patient-Centered Outcomes in Hospice Care
Hospice Scales
Confusion Assessment Method (CAM)
Cumulative Illness Rating Scale (CIRS)
Edmonton Symptom Assessment Scale (ESAS) and ESAS Form (PDF)
The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp)
Hospitalization Risk Profile (HRP)