end of life
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: Amanda Coggin
By Alistair Shanks
In a small room on the second floor of a Victorian house in San Francisco, eight people are gathered around a bed, autumn light pale on the faces and walls. A man, dead less than an hour, lies on the bed, head resting on the pillow, grey-white hair brushed in feathery strands, arms at his sides outside the covers, palms down. Except for the greyish pallor of his skin and unnatural stillness of his body, he could be asleep. Next to the bed is a table draped with a gold tablecloth and arranged with flowers, a bell, a candle, and a bowl containing an herbal brew. A volunteer rings the bell and the sound dissolves slowly into the silence of the room.
We are here to perform the “bathing ritual,” a ceremony that allows family, friends, volunteers, and staff to say their goodbyes to those they have loved and cared for. This scene has been repeated countless times over the years as Zen Hospice staff and volunteers have performed this ritual at the now-closed Guest House.
A middle-aged man steps forward, picks up a washcloth from a tray held by a volunteer and dips it in the bowl containing the herbal brew. It is Yerba Santa, translated as “holy herb,” also known as Penny Whistle, a fragrant herb that grows locally and is used by native American peoples for a variety of cleansing rituals. He squeezes it out and approaching the bed, picks up the dead man’s left hand and gently wipes it with the cloth, turning the hand over delicately to cleanse the palm and fingertips. His voice catches in his throat as he murmurs, “Thank you, Dad, for the way you always looked out for me… I love you…” His voice trails off into the stillness of the room.
Zen Caregiving Project volunteers care for people nearing the end of their lives, finding ways to provide companionship, kind attention, and a loving presence during whatever time they have left. As someone weakens and nears death we sit with them silently, offering a simple witnessing presence to their final hours, minutes, and breaths.
Our care does not end at death. For family and friends of a deceased loved one, as well as volunteers and staff, what happens after death, can be just as significant as the care they receive in their last weeks and days. Too often people don’t know what to do in those raw moments after their loved one has died. In many cases, we have lost the traditions and practices for honoring and marking the passing of those we love.
One by one the people in the room take their turn choosing a washcloth, dipping it in the Yerba Santa mixture, squeezing it out, and approaching the bed to cleanse the hands and face of the deceased man. Many do this in silence, some speak words of love and sadness, gratitude. When all have taken their turn we stand in silence until the volunteer rings the bell, sharp and clear in the stillness.
Since its beginning, Zen Hospice Project has offered this simple bathing ritual for deceased residents. It is a way to mutually engage family, friends, volunteers, and staff in a tangible enactment of love and grief. This tender act of cleansing may be the last opportunity family and friends have to touch their loved one.
Despite its long history at the Guest House, this ritual had never been done at Laguna Honda Hospital until October 12, 2019, when Zen Caregiving volunteers, with the support of hospital staff, performed it for 40 friends and family members of a deceased patient. Attendees ranged in age from seven to 79 years of age. Some participated actively, others observed. ZCP volunteer Audrey Meinertzhagen described it as a “force field of urgent love.”
In the institutional setting of a large, public healthcare facility that does not lend itself to intimacy, the enactment of this ritual takes on even greater significance. The true beauty of the bathing ritual lies not in creating a perfect environment, although all efforts are made to create a serene and safe space for its enactment. Its power comes from the careful and loving actions of the community of participants and the opportunity to express deep loss in a tangible way. We at Zen Caregiving Project are excited to be able to offer what the resident’s daughter described as a “loving and compassionate farewell,” to the families of residents who die in our care.
Hospice care is often misunderstood, which can lead to confusion about what hospice is and is not. We dispel six hospice myths.
Hospice isn’t a place but a type of care.
Hospice care provides the highest quality of life possible during the time your loved one has remaining. Hospice focuses on alleviating pain and other symptoms while addressing emotional and spiritual needs.
Hospice care isn’t something to be feared.
While hospice doesn’t treat the illness, it maximizes the patient’s quality of life in their final months. Hospice addresses the spiritual and emotional needs of the patient while providing comfort at the end of life.
Hospice care isn’t about giving up.
Hospice isn’t about giving up hope but redefining hope by helping patients to restore relationships, find peace, and spend time with their loved ones without aggressive medical intervention that often is painful and intrusive.
Hospice care isn’t just for cancer patients.
Hospice is a special kind of care for anyone living with any serious illness that has been diagnosed with six months or less to live by their doctor or specialist. If a loved one has suffered from a stroke, dementia, ALS, MS, liver disease, heart disease, or other serious illnesses, he or she may benefit from hospice care.
Hospice care isn’t to cure the underlying disease.
The goal of hospice care isn’t to cure the underlying disease; its focus is on symptom management, pain control, and comfort so that the patient can enjoy the highest quality of life possible during the time remaining. Hospice care also provides counseling, practical support, and respite.
Hospice care isn’t always an easy choice.
Family and friends must remember that hospice exists to provide compassionate care for loved ones at the end of their life when it has been determined that there is nothing medically that can be done to reverse or cure the underlying disease. Hospice care focuses on pain alleviation and symptom control and encourages an emphasis on emotional healing and relationships.
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.
The End of Life Collective is a community of caregivers and care seekers gathered in one place to help you and your family through life’s most important time.
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.
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.
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.
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.
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?
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.
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.
A directory of certified end-of-life doulas thoroughly trained in all three phases of end-of-life care.
A company offering interactive and collaborative remote memorial services enabling five to 500 family and friends to memorialize, eulogize, and celebrate a deceased loved one. From afar, family, friends, and community will virtually attend your loved one’s end-of-life celebration.
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.
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.
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.
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.
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.