Hospice & End-of-Life Care & Planning

American Academy of Hospice & Palliative Medicine

American Academy of Hospice and Palliative Medicine (aahpm.org)  

Hospice Foundation of America can assist you in locating a hospice facility near you. They also provide online resources regarding palliative and end-of-life care.

https://hospicefoundation.org/ 

Hospice Foundation of America: Understanding Hospice: Getting Answers (pdf booklet with 24 common questions with detailed answers)

8-5x11_booklet_Hospice_Cagle_Sept1.pdf (hospicefoundation.org) 

National Hospice and Palliative Care organization (NHPCO):  Enhances and expands access to care that addresses holistic health and the well-being of communities.

Home | NHPCO 

Centers for Medicare & Medicaid Services (CMS): Hospice Coverage, Benefits, Level of Care

Hospice | CMS 

CMS Medicare Hospice Benefits Guide

Medicare Hospice Benefits 

Choosing a Hospice Care Provider (American Cancer Society)

Hospice Care | Finding a Hospice Program | American Cancer Society 

Dispelling Hospice Myths (HFA)

https://hospicefoundation.org/Hospice-Care/Dispelling-Hospice-Myths

POLST/Portable Medical Orders: POLST communicates your wishes as medical orders, a POLST form tells all health care providers during a medical emergency what you want or don’t want. 

https://polst.org/

All About Advance Directives (Joint Commission)

Understand and Complete Your Advance Directives | The Joint Commission

Cancer Estate Planning Tools (Triage Cancer)  At Triage Cancer, we provide estate planning tools for individuals diagnosed with cancer and their caregivers. We provide information to help you understand and complete the legal documents that can make up an estate plan, including wills, trusts, advance health care directives, powers of attorney for financial affairs, and much more. Estate planning also includes medical decision-making and practical issues, like who has access to your digital assets (e.g., pictures, music, emails, etc.). Estate planning is an important process for individuals and families, no matter your age, health, or income.

https://triagecancer.org/cancer-estate-planning-tools

The Coalition to Transform Advanced Care (C-TAC): C-TAC is a coalition of 170 organizations that share our vision of person-centered care that meets patients’ goals and honors their dignity. Together we are opening the door to a new healthcare paradigm built on greater equity, public engagement, and workforce development. Vision: All persons impacted by serious illness, especially those who are underserved and under-resourced, have a high quality of life – on their own terms.

https://thectac.org/ 

Zen Caregiving Project: We nurture caregivers and those they care for by teaching skills rooted in mindfulness and compassion while fostering connections.

Home | Zen Caregiving Project

UCSF MERI Center: Advance Health Care Directives Toolkit (in English, Chinese, Russian, Spanish)

Advance Health Care Directive Forms | The MERI Center at UCSF 

Compassion & Choices: End-of-Life Resources. Compassion & Choices is the nation’s oldest, largest and most active nonprofit working to improve care, expand options and empower everyone to chart their end-of-life journey.

Compassion & Choices | End-of-Life Resources (compassionandchoices.org)

Five Wishes: The nation’s only national advance care planning program. Providing peace-of-mind for more than 25 years.

https://www.fivewishes.org/ 

Say It Now How will you express gratitude to the people who’ve impacted your life?Expressing gratitude solidifies relationships and eliminates the prospect of having regrets for things you might have said. It releases warmth. It can even change lives. We hope that you’re inspired to join us. Say It Now is a movement to change how and when we express gratitude for the people who’ve meant so much in our lives, from too late to right now. How? By empowering people with easy tools to jumpstart their gratitude journey. Whether expressed in writing, verbally or at a group event, letting someone know how much you appreciate them is a transformative experience – for their life and yours!  All the step-by-step resources you need to do your own expression of gratitude are available right here.

https://www.justsayitnow.org/

The Conversation Project: The Conversation Project® is a public engagement initiative with a goal that is both simple and transformative: to have every person’s wishes for end-of-life care expressed and respected. The Conversation Project believes that the place for this to begin is at the kitchen table—not in the intensive care unit—with the people we love before it’s too late. The Conversation Project offers tools, guidance, and resources to begin talking with loved ones about yours and their wishes.

The Conversation Project - Have You Had The Conversation?

Next Step in Care: Provides written guides and videos for family caregivers that help them through any medical treatment – from visiting the family doctor, trips to ER, hospitalization and discharge and Homecare.

https://www.nextstepincare.org/Caregiver_Home/ 

LGTBQ+ Advance Care Planning Toolkit (SAGE) A step-by-step guide for the LGBTQ+ community in preparing for healthcare needs and end-of-life decisions.

https://www.lgbtagingcenter.org/resources/pdfs/SAGE%20Advanced%20Care%20Planning%20Toolkit%20Final.pdf

Conversation Starter Guide: Discussing Wishes, Goals for End-of-Life Care (The Conversation Project)

https://theconversationproject.org/wp-content/uploads/2020/12/ConversationStarterGuide.pdf 

What Matters to Me Workbook (The Conversation Project)

https://theconversationproject.org/wp-content/uploads/2020/12/WhatMattersToMeWorkbook.pdf 

How to Give a Eulogy that Truly Celebrates the Person You’re Honoring by BJ Miller, MD + Shoshana Berger (article)

https://ideas.ted.com/how-to-give-a-eulogy-that-truly-celebrates-the-person-youre-honoring/ 

How to Prepare for a Good Death by BJ Miller, MD (article)

https://ideas.ted.com/how-to-prepare-for-a-good-death/ 

CancerCare: Anticipatory Grief: Preparing for a Loved One's End of Life

Anticipatory Grief: Preparing for a Loved One's End of Life (cancercare.org) 

CancerCare: Helping Children Prepare for the Loss of a Loved One

End of Life | Children, Parent, Grieving (cancercare.org) 

The Dougy Center provides support in a safe place where children, teens, young adults, and families who are grieving can share their experiences before and after a death. We provide support and training locally, nationally, and internationally to individuals and organizations seeking to assist children in grief.

 The Dougy Center for Grieving Children & Families | Portland, OR 

PREPARE for Your Care: To ensure all people are prepared and able to make informed medical decisions for themselves and their loved ones and to have a voice in their health care. (Advance directives, pamphlets, question guides, etc.)

PREPARE (prepareforyourcare.org) 

Kubler-Ross Stages of Dying and Subsequent Models of Grief (2023)

https://www.ncbi.nlm.nih.gov/books/NBK507885/

Signs of Approaching Death (Hospice Foundation of America)

https://hospicefoundation.org/Hospice-Care/Signs-of-Approaching-Death

A Caregiver's Guide to the Dying Process (HFA)

https://hospicefoundation.org/hfa/media/Files/Hospice_TheDyingProcess_Docutech-READERSPREADS.pdf

Legacy Ideas and Resources (Bright Spot Network) A cancer diagnosis often prompts people to take stock of their lives and what they may leave behind.  One practical way to work through some of the emotions that emerge is through legacy projects: that heartwork that helps you and your loved ones remember special moments and make wishes for the future. 

Legacy Ideas and Resources — Bright Spot Network 

Artsy Voiceprint Create a one-of-a-kind soundwave art from the memorable sounds in your life. You provide us with a voice recording, favorite song, or any treasured sound and we'll transform it into a beautiful giftable art that captures a special memory in a lasting way. Each piece is made to order using the highest quality materials. A gift that is sure to be unique, sentimental, and unforgettable.

Artsy Voiceprint | Soundwave Art - Shop Anniversary & Birthday Gifts 

Memories Live Memories Live uses the power of your story to create a legacy movie. A Memories Live legacy movie is made at no cost for individuals with life-limiting illnesses. With our assistance, you direct your own movie while Memories Live provides the technical support.

Memories Live | Legacy Videos | New Jersey 

1000 Things You Don't Know About Me (Piccadilly Press) 1000 Things You Don’t Know About Me is a great way to dive in to the real “you” through simple, yet thought-provoking questions. With five questions per page—totaling 1000 questions on over 200 pages—go at your own pace and give yourself the best gift you can give: the gift of you!

https://www.goodreads.com/en/book/show/50727580

Episode #135- BJ Miller, MD- How Understanding Death Leads to a Better Life (Peter Attia MD) BJ Miller is a hospice and palliative care specialist on a quest to reframe our relationship with death. In this episode, BJ begins with how his own brush with death radically shifted his perspective and ultimately forged his path towards palliative care and helping patients integrate and understand their life in a meaningful way. BJ recounts several moving stories from his patients, which reveal important lessons about overcoming the fear of death, letting go of regret, and what’s most important in life. He discusses the major design flaws of a “death phobic” healthcare system. Furthermore, he makes the case that seeing death as a part of life allows us to live well, as opposed to living to evade death itself. He concludes with a discussion around physician-assisted death as well as his hopes around the use of psychedelics to reduce suffering in end-of-life care.

https://peterattiamd.com/bjmiller/

Burial Funds & Programs That Help With Funeral Costs

https://www.debt.org/family/help-with-funeral-costs/

Social Security Administration: Death Benefit A one-time lump-sum death payment of $255 can be paid to the surviving spouse if they were living with the deceased. If living apart and they were receiving certain Social Security benefits on the deceased’s record, they may be eligible for the lump-sum death payment. If there is no surviving spouse, the payment is made to a child who is eligible for benefits on the deceased’s record in the month of death.

https://www.ssa.gov/benefits/survivors/ifyou.html

Funeral Consumers Alliance is a national consumer organization that monitors the funeral industry, keeping a close eye on industry trends and advocating for fair practices on the behalf of consumers. Our network of volunteers not only work directly with consumers, but also alongside those fighting for legal and regulatory reform on the local, state, and national levels. Funeral Consumers Alliance does not provide financial assistance for funerals or burials. We do offer advice on how to obtain a dignified, affordable funeral.

https://funerals.org/

10 Tips for Saving Funeral Dollars (Funerals.org)

https://funerals.org/get-help/how-to-save-money/ten-tips-for-saving-funeral-dollars/

Green Burial & Other Environmentally Friendly Choices (Funerals.org) "Because green burials do not involve embalming, fancy caskets, or concrete vaults, they can be a very cost-effective alternative to conventional burials, lowering the cost by thousands of dollars. If the family supplies their own shroud or coffin, the cost can be further reduced."

https://funerals.org/get-help/green-options/

Pre-Planning & Pre-Paying (Funerals.org) "Making funeral arrangements at the last minute can be stressful, expensive, and disappointing in terms of services received. Planning ahead can provide the following benefits: Significant cost savings, quite possibly cutting funeral costs by half; Funeral service items you really value and want; Peace of mind because when funeral services are needed, survivors will have far fewer complex decisions to make quickly."

https://funerals.org/get-help/pre-planning-advance-directives/

How Memorial Societies Can Help with Funeral Planning (Empathy.com) "A memorial society is a local nonprofit organization designed to help advise you and your family as you plan a funeral or other memorial service. Typically, these groups are connected to the Funeral Consumers Alliance, a group dedicated to protecting the rights of consumers in the funeral industry. In general, a person will have signed up for their local memorial society sometime before their passing in order to provide their loved ones with the help they need during this tough time. While these societies charge a membership fee (which varies depending on your area), it’s typically nominal compared with the hassle they can save the family when it comes to planning."

https://www.empathy.com/funeral/how-memorial-societies-can-help-with-funeral-planning

The Complete A-to-Z Guide to Getting State Government Assistance for a Funeral (Funeralocity.com) State directory of government assistance programs for funeral and burial expenses. 

https://www.funeralocity.com/blog/the-complete-a-to-z-guide-to-getting-state-government-assistance-for-a-funeral/

2-1-1 is the most comprehensive source of information about local resources and services in the country. We are the boots on the ground, the local experts who make finding help easier. There are more than 200 211 agencies across the United States, each with a team of compassionate, highly trained community specialists who are available to help you access the best local resources and services to address any need. The 211 network in the United States responds to more than 21 million requests for help every year. Most calls, web chats, and text messages are from people looking for help meeting basic needs like housing, food, transportation, and health care. The Federal Communications Commission (FCC) designated 211 as the 3-digit number for information and referrals to social services and other assistance in 2000. The 211 service is provided by more than 200 local organizations that are committed to serving their communities. Many different kinds of organizations operate the 211 service, including United Ways, Goodwill, Community Action Partnerships, and local crisis centers.

https://www.211.org/

United Tissue Network A cost-free alternative to traditional funeral and cremation services

We understand that making end-of-life decisions can be overwhelming. Donating your body, or your loved one’s body, to medical education is one of the most meaningful decisions you can make to help the lives of others now and into the future. Since 2009, we have helped nearly 12,000 families mitigate or eliminate final expenses and contribute to medical education. Individual whole body donation contributes to thousands of people’s successful medical procedures. UTN is a Non-profit 501(c)(3) and Accredited Organization. We handle the entire process and cover all the costs of the transport from the place of passing, the cremation, and returning ashes to you, if you wish.

https://unitedtissue.org/

MedCure Donating Your Body to Science. Advancing the Science of Medicine with a Priceless, No Cost Option. Whole body donation is essential to our understanding of the human body and the development of new medical treatments. At MedCure, we help donors and their families connect with the physicians, surgeons, and researchers who are continuing this vital work. Thanks to their generosity and selflessness, we are able to live longer, healthier lives. MedCure honors our donors by covering all expenses related to the donation process, including transportation, cremation, and a certified copy of the death certificate. We can accommodate the family’s wishes for the disposition of cremated remains, whether returned to them or placed in an ossuary. By request, we can also provide a family letter that shares information on how the donor contributed to medical science. Donation Coordinators are available 24 hours a day to answer your questions and assist you with the donation process. Whether you are registering your future intent to be a body donor, you are currently receiving hospice care, or if your loved one has already passed, we can guide you through every step.

https://medcure.org/

Research for Life makes every effort possible to educate and help families through this deeply personal decision.  The most common misconception we encounter is people believing that they would not be accepted as a donor. Who can donate? Almost everyone is eligible for whole body donation, even at the time of passing. There is no upper age limit restriction, and we accept donors who have or have had cancer or other diseases that would disqualify them from certain types of transplant donations. There are many myths about whole body donation; read our article on Understanding Whole Body Donation. We believe it is important to know your options and be able to accurately compare whole body donation to other forms of final arrangements. Research For Life complies with the highest standards available throughout the donation process to honor the donor’s selfless gift.  Our donation program is provided at no cost to the donor or the donor’s family. As a part of our whole body donation program, Research For Life provides transportation from the location of the passing and cremation at no cost. When you donate your body to science, we make the process simple and helpful for your family members. Saving your family money is important, but saving them peace of mind is priceless. What happens to the cremated remains is up to you. We provide several options to all our donors: Spread Ashes at Sea (a.k.a. Burial at Sea) or the “No Return” Option.

https://researchforlife.org/

Advanced Funeral and Cremation No-Cost Cremation Package with Body Donation When donating your body to science, you have the satisfaction of knowing that you’re making a positive difference in finding treatments for medical conditions, such as Alzheimer’s disease, heart disease, cancer, diabetes, and many more. Finding treatments for these conditions wouldn’t be possible without your selfless donation, so you can be a part of something bigger even after your passing. In order to qualify for body donation, please give us a call. With your gift of body donation, we offer a no-cost cremation package including a cost-free cremation, transportation of the body, and an urn.

https://www.advancedfuneralandcremation.com/services/no-cost-cremation

CancerCare: Grief and Loss Support/Resources (counseling, in-person and virtual support groups, podcasts, publications, Q&A, Workshops, Programs)

Grief and Loss, Bereavement, Cancer, Information, Resources (cancercare.org) 

Good Grief: provides direct services for children and adults coping with loss due to death.

www.good-grief.org 

Cancer Support Community: Bereavement

Bereavement | Cancer Support Community 

Sue Ryder Online Bereavement Support is here to make sure everyone approaching the end of their life or living with grief can access the support they need. There is no one size fits all when it comes to how we cope and the help we need, but with our support, no one has to face dying or grief alone. We are there when it matters.

https://www.sueryder.org/how-we-can-help/online-bereavement-support

The Compassionate Friends: Non-Profit Organization for Grief

The Compassionate Friends Non-Profit Organization for Grief 

National Cancer Institute: Grief, bereavement, and Loss (includes helping children cope)

Grief, Bereavement, and Loss - NCI (cancer.gov) 

griefHaven: Here you will find a vast array of proven and unique grief tools, education, support, and lots of love, with new tools being added regularly. All of this equals a life with hope, and it is with hope that we eventually learn to embrace life again. Because everyone deals with grief differently, we have created something for everyone: watch, listen, read, share, learn, and feel embraced by the love put into this true haven of hope. 

griefHaven - Support For The Grieving | Grief Support 

American Cancer Society: Coping with the Loss of a Loved One

Coping with the Loss of a Loved One | Grief and Loss | American Cancer Society 

American Cancer Society: Seeking Help and Support for Grief and Loss

Seeking Help and Support for Grief and Loss | American Cancer Society 

Open to Hope

Open To Hope, Support for Dealing with Death, Grief, Loss, Bereavement 

National Widowers Organization

Welcome Widowers – National Widowers' Organization 

Grief Resources (Hospice Foundation of America)

https://hospicefoundation.org/Grief-(1)

Imerman Angels Grief Toolkit (PDF) This toolkit is a resource created by and for our community to utilize when assisting others in managing their grief process.

ia-grief-toolkit.pdf (imermanangels.org) 

Resources for Grief and Loss for Children (Bright Spot) Reading books to kids is a great way to help them understand difficult emotions like grief and loss.  Books can be a way to open dialogue and conversation about the complicated feelings that might come with the death of a parent and help to normalize some of those big and, perhaps unfamiliar, feelings that they might be having. Reading together helps a child know that they are not alone. 

Resources for Grief and Loss — Bright Spot Network 

TAPS Tragedy Assistance Program for Survivors TAPS is the national nonprofit organization providing compassionate care and comprehensive resources for all those grieving the death of a military or veteran loved one. Since 1994, TAPS has provided comfort and hope 24/7 through a national peer support network and connection to grief resources, all at no cost to surviving families and loved ones. TAPS provides a variety of programs to survivors nationally and worldwide. Our National Military Survivor Seminar and Good Grief Camp has been held annually in Washington, D.C., over Memorial Day weekend since 1994. TAPS also conducts regional survivor seminars for adults and youth programs at locations across the country, as well as retreats and expeditions around the world. Staff can get you connected to counseling in your community and help navigate benefits and resources. If you are grieving the loss of a fallen service member, or if you know someone who can use our support, the TAPS 24/7 National Military Survivor Helpline is always available toll-free with loving support and resources at 800-959-TAPS (8277).

https://www.taps.org/