end of life

Attending Your Loved One’s Final Moments

Reddit is a great platform for asking important questions, I use it regularly and often come across posts that are thought-provoking. I cross-posted one recent question from the platform to our community on Facebook,

“Should I be in the room when they take my loved one off of life support?”

It’s a difficult question with no easy answers. I was curious to hear about the experiences of our followers and ultimately received varied yet quite insightful responses. Below is a sampling of the comments,

The question isn’t should I, but can I. If you can, then be there, and if you cannot … don’t. No wrong or right answer here and no one gets to judge you one way or the other!

Someone said to me it is an honor to be there when someone enters the world, it is also an honor to be there as they exit the world. And suddenly I got it, and felt so much better.

The most important question is…What do they want? What’s important to them? If they wish to be there then WE as a team should support them. We have no right to decide if they can “handle it” or not. We should allow them to decide what’s best for both their family and themselves. 

Retired Hospice Chaplain here:
If you feel you can and have good support.
It can be a mystical, beautiful moment to be there at the time of passing, but if you aren’t sure, have someone (maybe a Hospice person) with you. I’ll hold you in prayer.

I recently experienced this with a dear friend who had suffered a massive heart attack and was taken off life support four days later. I knew that she was already gone, but I still did not want her to be alone. It wasn’t gruesome or disturbing; was difficult emotionally and profoundly sad. It helped me know that I was there for her until the very end.

It’s certainly a difficult question. What are your thoughts? You can comment under the original Facebook post if you’d like to leave a response.

Open Death Conversation: Online Forum

December 11, 2019 (6:30 - 8:30pm PDT/San Francisco)
Zoom Live Webinar
$25

A guided journey into our own dying process to help us view the full arc of our lives in a realistic way and promote greater compassion towards others who are going through the end of life experience.

Instructor: Cassandra Palmer

Read more »

Exploring Death and Dying

End Well

A non-profit media platform and annual conference with the aim of normalizing conversations about our mortality throughout life. The website shares videos from leaders in all sectors who approach the topic of death and loss from many diverse angles.

The Five Invitations: Discovering What Death Can Teach Us About Living

A book by Frank Ostaseski, the cofounder of the Zen Hospice Project and Metta Institute, who has sat on the precipice of death with more than a thousand people. He has trained countless clinicians and caregivers in the art of mindful and compassionate care. In The Five Invitations, he distills the lessons gleaned over decades of selfless service offering an evocative and stirring guide that points to a radical path to transformation.

ReImagine

ReImagine is a citywide exploration of death and the celebration of life through creativity and conversation. ReImagine will operate in San Francisco and New York over the coming year.

End Game

A short documentary following the stories of three visionary medical providers, one of which is Zen Hospice Project, caring for and supporting those approaching the end of their lives.

What does it feel like to die?

A book by long-time hospice volunteer, Jennie Dear, who uses the latest medical findings and sensitive human insights to offer answers to questions that affect us all like Does dying hurt? and Is there a better way to cope with dying?

Death Cafes

At a Death Cafe, people drink tea, eat cake, and discuss death. You can search for the next cafe anywhere in the world. They also offer numerous resources on death and dying.

Death Over Dinner

An interactive toolkit to help you set-up and host a dinner to discuss death with friends and family. The website provides videos, articles, and thought-provoking questions. Even if you don’t end up hosting a dinner party, it will get you thinking.

Five Useful Resources to Learn About and Explore Palliative and End-of-Life Care

A Beginners Guide to the End: Practical Advice for Living Life and Facing Death

Written by BJ Miller (a previous Zen Hospice Project Executive Director) and Shoshana Berger, Director at IDEO, this book is a practical guide to approaching the end of life. It includes instructions on everything from navigating the health care system, to talking to your children about your will, to writing a great eulogy.

Get Palliative Care

This website provides clear and comprehensive information on palliative care for people living with a serious illness, or those caring for them. It includes detailed descriptions of what palliative care does and how to access it, videos and podcasts on the topic, and a directory of Palliative Care providers across the US. 

National Hospice and Palliative Care Organization (NHPCO)

Part of the NHPCO’s website, the Patient and Caregiver pages provide free resources on a range of topics, including deciding palliative care, hospice care, advance care planning, caregiving, and loss. Their resources are practical, clear, and easy to read.  

Compassion and Choices

This interactive site provides templates, resources, and toolkits to help you with planning for your future care. Spanish versions of all site documents are also available.

HospiceDirectory.org

Sponsored by the Hospice Foundation of America, HospiceDirectory.org provides a national database to locate hospices by location and/or name, as well as links to additional information for both caregivers and patients.