For years, Zen Hospice Project has garnered praise for reimagining the end-of-life experience for both the living and the dying. Guided by compassion and a commitment to service, Zen Hospice Project has helped many San Fransisco residents die in comfort, and they continue to educate caregivers across the globe on how to provide mindful, loving end-of-life care.
Perhaps the most well-known of Zen Hospice Project initiatives has been their Guest House. This residential hospice program garnered media attention over the years and was most recently featured in the Oscar-nominated End Game. This Netflix documentary offers a glimpse at the impactful, high-touch care provided by Zen Hospice’s interdisciplinary teams to those nearing the end of life.
After closing the doors of its Guest House last June, many have wondered what’s next for the organization and how they can best support Zen Hospice Project. End Well recently had the pleasure of talking to Roy Remer, interim Executive Director of Zen Hospice Project who shares the history and mission of the organization, the ways they continue to serve caregivers and the terminally ill, and how the End Well community can contribute to their mission.
What is Zen Hospice Project?
Zen Hospice Project (ZHP) is a non-profit organization, founded in San Francisco in 1987, that is dedicated to the mission of improving the experience of palliative and end-of-life care for as many people as possible. Since its founding, the organization has been recognized as an innovative leader providing care for those facing advanced illness and for their loved ones, while also educating and supporting an ever-growing community of caregivers worldwide.
What is ZHP’s mission?
We see caregiving as a significant and deeply human service.
Our work is grounded in practical expression of the universal spiritual values of compassion and service. Zen Hospice Project approach reflects a three decades-long association with contemplative traditions and practice.
How has ZHP’s mission shifted since its inception?
Zen Hospice Project was founded through a grant from the San Francisco Zen Center in an era when San Francisco was coping with the AIDS crisis and an influx of Southeast Asians who did not have access to adequate end-of-life care. Zen Hospice Project was founded with the goal of providing compassionate care for people who were stigmatized by their identity and coping with homelessness. From these founding moments, Zen Hospice Project’s mission to bring compassionate human-centered care to as many people as possible has only grown to include more and more people.
Today, our focus is on continuing to provide training and support to caregivers and volunteers through our Mindful Caregiving Education (MCE) curriculum and our Volunteer Caregiver Program. We are focused on and committed to making a meaningful difference in how family and professional caregivers, and our volunteers, are prepared and supported to provide compassionate palliative and end-of-life care.
We were saddened to hear that the guest house closed last year. Why did this happen?
Yes, this has been a huge loss for us; a really big change. After nearly 30 years of providing residential hospice and caregiving support to the dying and their family and friends, Zen Hospice Project ended caregiving services at the Guest House in June 2018.
The residential hospice program was a one-of-a-kind environment that functioned outside the traditional healthcare reimbursement process, which made it dependent upon not only grants and donations to sustain operations, but also referral and reimbursement partnerships.
When our partnership with a local leading medical center ended, we searched for another partner. We came close to establishing a new partnership, however the process took longer than expected. Despite many generous donors in our community who helped us sustain operations until this year, ultimately, generating revenue to maintain the level of care that we were providing became unsustainable, especially in the face of rising costs.
Do you plan to re-open in the future?
We have no plans to reopen a care facility in the near future. Our focus will be on our Volunteer Caregiver Program at Laguna Honda Hospital and new sites of service, and our Mindful Caregiver Education program. This is where we believe we can make the greatest social impact.
To ensure the success and longevity of these programs, the Guest House was sold. This allowed the organization to pay off debts incurred in an effort to keep the facility operating until a new partnership was secured. The sale also provided for an operating reserve to sustain the organization into the future. If the reimbursement landscape for residential hospice were to change in the future, we would consider trying to recreate what we had at the Guest House.
The loss of our beloved Guest House has had a profound effect on our internal and extended community. The Guest House was not only a care facility, but it was our home. We are still very much in a process of reestablishing who we are without our home.
But most importantly, this transition has not changed our mission to share our model of care with as many people as possible through MCE and the volunteer program. If anyone in the community has questions about our transition through the Guest House closure or what’s next for Zen Hospice Project, I welcome emails to me directly at email@example.com.
What is the ZHP approach to providing palliative and end-of-life care?
Our approach is grounded in the contemplative practices of deepening awareness, cultivating an open heart, and accepting change and death as natural parts of life. In the context of hospice, death can be painful and sad, but it is not a problem to be solved.
We train caregivers in learning how to connect deeply with the persons whom they serve. We support healing and curing, however our focus is on cultivating a quality of presence that is not bound up in attachment to outcome. The practice of cultivating presence and acceptance of things as they are provides space for the people we serve to evolve and grow spiritually even as they approach the end of life.
What is mindful caregiving?
Mindful caregiving is the awareness that everything changes and while change can be painful, it is part of the human experience. It is a quality of presence where the caregiver notices when he or she becomes distracted and is practiced in returning attention to the recipient of care and task at hand. It is infusing the caregiving experience with prosocial emotions, which in turn invites deep human connection. It is witnessing without attachment to fixing.
How does ZHP support the caregivers/family of those nearing the end of life?
When we sit with caregivers and family members of those nearing the end of life, we hold space to express the difficult emotions that often arise when witnessing a loved one approach death. We listen without judgement or solutions. We model kindness and openness. We accept the messiness of family dynamics and do not turn away.
If requested, we will offer ways of connecting with loved ones that support the process of dying. It may as simple as adjusting a pillow, or as profound as saying something you’ve never allowed yourself to say before.
In what ways can we better support the dying and help to provide comfort?
We can help people feel less alone. Without attachment to the ways things were, we can help those we serve be present to their current circumstances. If we can be with people in the present moment, free from the complications of the past or without anticipation of what comes next, we can experience loving presence. In fact, when we are truly present, there is no room for anything else; just love.
For some, a hand to hold is comforting. For others, we simply listen. It can be extremely helpful to elicit stories from those who are moving toward death. If we can show up authentically with the intention to be with whatever suffering shows up, our presence may comfort. And we accept with no less of an open heart that when it doesn’t, it doesn’t.
What new opportunities is ZHP exploring to continue supporting the community?
Zen Hospice Project is working now to augment the offerings and availability of Mindful Caregiver Education for family, informal, and professional caregivers. Additionally, we are working hard to increase awareness of and accessibility to our curriculum through improvements such as upgrading our website, increasing scheduling flexibility for our courses, developing new curriculum, and offering online introductory courses on a donation basis. Additionally, I am personally focused on establishing custom partnerships with health-care providers to distribute mindful caregiver courses to their member family caregivers.
We are currently pursuing opportunities for our volunteers to serve at new locations in San Francisco beyond Laguna Honda Hospital in order to bring our model of care to more palliative and hospice care residents and their families.
Finally, we continue to share what we learned from our experience of operating the Guest House facility. It always served as an incubator, inspiring others to open their own residential hospice houses. We trust that this legacy will continue.
We are eager to share our 31 years of experience and to collaborate with the End Well community and beyond. I invite this community to please reach out to me with ideas for collaboration, custom courses, and ways to partner to improve caregiving and end of life experiences for everyone.
Given the organization’s longevity, what would the team like to share about what they’ve learned about the end-of-life experience?
Well, collectively we have learned a lot. We have impacted many over the years through our programs. The end of life experience presents an opportunity for profound growth and connection for both the one who is dying and family, friends, and caregivers. It can be a healing time whereby we can experience the deepest sense of connection we’ve ever had. It is true that dying can be messy and painful, yet if we can train the heart and mind to open to the experience, it can be expansive.
From my own experience, I know this to be true for the ones witnessing the death of a loved one, and I trust it is true for the one who is dying. I’ve learned that taking death on as a lifelong teacher can enhance one’s sense of well-being, it deepens the experience of the prosocial emotions of compassion, gratitude and awe. We learn directly that life is short and precious; the joyful moments and the suffering moments.
How can the community help support ZHP? And caregiving and hospice in general?
The community can support Zen Hospice Project by spreading the word about our Mindful Caregiver Education. We have learned so much about the challenges and joys of caregiving and what’s possible at the end of life; we want to share what we’ve learned and our model of compassionate human-centered care with as many people as possible.
We all have caregiving in common; we’ve been cared for, we know caregivers or are caregivers, and most likely, we’ll need caregiving at some point in our lives. People can support caregiving and hospice in many ways: by encouraging self-care or offering respite to the caregivers in their own lives; by supporting organizations through donations or volunteer service that are working against the clock to prepare future caregivers for the roles they will eventually fill; and by finding opportunities to talk about death and dying and their own values about the end of life with family and friends.
We are energized to see so much engagement, innovation, conversation, and commitment to improving caregiving and end-of-life experiences; the need is great and growing and we plan to be here and to continue to collaborate with the End Well community and organizations, clinicians, individuals, and other partners to make a meaningful impact in designing a better experience for everyone.
What activities or training opportunities exist that our community can get involved with?
Zen Hospice Project’s Volunteer Caregiver Program is thriving, and our volunteer caregivers continue to serve on the Palliative Care Ward at Laguna Honda Hospital in San Francisco. Soon, we expect to have an additional service site for volunteer caregivers.
We train volunteers to serve with a range of skills grounded in a foundation of mindfulness, compassion, and practical support for residents, families, and even other caregivers. Our volunteers find their training and service to be a source for resiliency, inspiration, and open-heartedness. As a result, the Zen Hospice Project Volunteer Caregiver Program has emerged as one of the longest continuously running hospice volunteer programs in the country. Although volunteers are required to commit to one year of service, many serve well beyond. Our average volunteer term is five years with many volunteers serving for a decade or more.
Additionally, our Mindful Caregiver Education courses are available to everyone; family, informal, and professional caregivers; friends of people who are sick or dying; those developing a mindfulness practice to support their relationships with family, friends, the public and one’s self; and those who anticipate being a caregiver in the future. Many caregivers share that they feel more confident, resilient, and patient in their caregiving roles after completing an MCE course.
Our Open Death Conversations, offered both in person and online, are intended for people who are interested in exploring and furthering their own relationship to the big topics of death and dying. Everyone is invited; we only ask that participants show up with an open heart and open mind, and allow themselves to go where they need to go. People from all backgrounds attend our conversations — young, old, many people who have not had experience with death, some people who are facing their own end of life.
We have no agenda other than to generate meaningful, energetic conversation free from judgment.
I am so grateful for the opportunity to share what’s going on at Zen Hospice Project with the End Well community, and I invite people to contact me directly at firstname.lastname@example.org ideas for partnership and collaboration, questions, or “just” for a conversation. (I know some of the best spots in the East Bay and SF for tea and a scone.)
Tom was just one of the many Residents we served at our Guest House in the past year. Because of the generosity from donors like you, we were able to serve Tom at end of life with no cost to him. Tom’s generosity to others throughout his life prevented him from being able to afford the cost of care at the Guest House. Had he not been cared for at the Guest House, Tom’s prognosis would have placed him with in-home hospice care, under the supervision of a single hospice care nurse for one hour, twice a week. Tom’s final days could have ended in an acute care setting, while connected to an array of machinery. Yet, Tom’s final days were the opposite of that, full of comfort and happiness complemented by the compassionate care of Zen Hospice Project caregivers.
One of our Guest House nurses shares her story:
Tom lived a life of service as a nurse and a chiropractor by profession, and as a valuable friend, mentor and teacher. He touched many, many lives with grace and healing. After his intense life-long devotion to the well being of other people, it was especially meaningful for him to receive the nurturing and care from us at Zen Hospice Project.
In the homey warmth of the Guest House, he was able to deeply receive the love of his friends, family and former colleagues, and of our nurses, volunteers, cooks and staff. This was a profound process of letting go of old identities and roles to embrace being loved as the beautiful, whole human he was. A radiant person, Tom glowed with gratitude at the Guest House, often tearing up with thankfulness for his lovely room and for the attentive love and care from our staff.
Tom loved us right back, adding to the joy and deep meaning of our time caring for him. He was able to truly live, love, enjoy, heal and grow, right until his last breath with us at his bedside in the Guest House. We are all grateful for our time with Tom and forever touched by him.
Tom touched us and left everyone with heart-filled gratitude to have met him and his family.
All of us at Zen Hospice Project thank you for your support and generosity with hope that you will continue to give, so that we can continue to help more people like Tom at end of life. Please support Zen Hospice Project and people like Tom. Give today! No gift is too small.
One of the Senior Instructors of Zen Hospice Project’s Mindful Caregiver Education Program discusses her path of service, lessons as a teacher and exciting new developments in the education program.
As a youth, Mary had the rare opportunity to gain awareness and respect for end of life care; her mother and stepfather founded a hospice for incarcerated men at the California Medical Facility in Vacaville. She was able to develop a sense for the importance and beauty of hospice and palliative care. However it was her later interest in Buddhism that really opened the door to her career in the field as an adult.
Seeking a structured way to explore her aspirations of using service as an expression of spiritual practice, Mary attended a Buddhist chaplaincy program. A faculty member there guided her to Zen Hospice Project to fulfill the program’s requirement of volunteer service. It was a perfect fit.
Mary completed the 43-hour volunteer caregiver training and continued as a volunteer at Laguna Honda Hospital and the Guest House facilities for about 10 years.
Early on in her hospice service, Mary experienced the moment when the Zen Hospice Project approach fully integrated into her practice.
One day at Laguna Honda Hospital, Mary was asked by a nurse to accompany her at the bedside while the nurse had to reposition and clean a man who was in an enormous amount of pain. The nurse asked Mary to come and be there to support the patient – to give him something else to focus on and to be a soothing presence. Mary realized it would also serve as support for the nurse while she was doing her necessary but pain-inflicting duty. Mary recalled something she learned in her Zen Hospice Project training: There is nothing to fix. She repeated this mini-mantra to herself while keeping herself grounded with her feet on the floor, her attention on breath, and simply being a centered presence in room. She gently stroked his hand and maintained eye contact with loving support, silently communicating “I’m right here with you, you’re doing a great job, this will be over soon…”
Mary embodied the lesson that there are places to draw from inside each of us, to keep ourselves stable in a challenging bedside situation – and to model and offer that presence out to those under care and everyone in the room.
Five years into her volunteer service, as a natural fit for the program, Mary was invited and joyfully became facilitator for volunteer caregiver training. Along the way, she also represented Zen Hospice Project in the local community at organizations and events. So when the Mindful Caregiver Education launched in 2014, Mary was on board from day one.
Mary says she is continually learning and maturing as a facilitator. Teaching these courses is a mindfulness practice in itself. She says of the Mindful Caregiver Education, “What we offer is not mechanical instruction. It is about how caring for others connects us to them and to ourselves. And draws us to universal human truths. Most everyone who enrolls in Mindful Caregiver Education finds it really nurturing. But it also brings up vulnerability and other strong emotions.”
This openness of the Zen Hospice Project approach brings up vulnerability for her as a teacher as well. So over time Mary has developed an exercise prior to teaching each course. She imagines the participants and feels gratitude and appreciation for them, consciously connecting to their humanity and offering her humanity in return, before they even get in the room together. She understands that the whole class will be co-creating something together, students and facilitators alike. And it is never the same experience twice.
The Zen Hospice Project education model is to teach in pairs whenever possible. Mary especially appreciates the opportunity to facilitate classes with a colleague. She feels that having a teaching partner produces a richer experience for everyone. Working alongside those new to teaching brings Mary a deeper level of awareness and responsibility to the work. It reinforces her sense of gratitude to be doing something that is meaningful to her personally, that she loves, and carries real value in the world.
Mary is committed to the Zen Hospice Project model of care and is excited about the opportunity to affect people’s approach to death and dying, and long term chronic illness, and in turn their approach to living. As her teaching experience expands, her personal practice continues to evolve.
Especially enthusiastic about the new Mindful Family Caregiving Education Program she has been co-creating with her fellow Zen Hospice Project faculty, Mary is passionate about reaching out to new communities and the potential broader effect on society.
“I believe so strongly in the importance of this work. I see it as a form of resistance. Not in any political way, but in a deeper human way. The work we’re doing in Mindful Caregiver Education and with Family Caregivers is a path to reclaiming our humanity. To look directly at our mortality and vulnerability can go a long way in helping us clarify and prioritize the best parts of ourselves. We see that there is so much power in simple things like kindness and tenderness, and in experiencing the mysterious beauty that is uncovered by paying attention… even when what we’re paying attention to is uncomfortable.”
Ken Hughes was the Vice President of the Paramount Flag Company here in San Francisco. In 1978 he was approached by Gilbert Baker, the original designer of the Gay Pride rainbow flag. Baker was looking for a manufacturer who could produce many flags for the 1979 Gay Freedom Day Parade. The design originally had eight stripes: pink, red, orange, yellow, green, turquoise, indigo and violet. Hughes was eager to help, yet suggested that Baker delete the pink stripe as flag fabric in that color wasn’t readily available for mass production. Turquoise was also removed, yielding the rainbow pride flag we know of today. The Paramount Flag Company is also well known for being a manufacturer of the California Grizzly Bear State Flag.
Ken began his life of service in the late 1980’s when he was a volunteer for The Shanti Project. Shanti is Sanskrit for “inner peace”. The organization pairs volunteers one-on-one with those in need: women with cancer, LGBT Seniors and those living with, and dying from HIV or HepC.
By the early 1990’s Ken was actively volunteering at Zen Hospice Project Guest House. As a practicing Buddhist he was drawn to the intimate environment where he could offer comfort and care to the Residents.
His dear friends were astounded at how quickly his disease progressed and suddenly he died.
Ken wished to acknowledge and celebrate Zen Hospice Project. He bequeathed a major gift to us, and we will be forever grateful for his service during life and his generosity as he left us.
Fly your flag proudly, Ken, you will be missed.
Joan begins her shift by greeting each Resident. She always asks how they are doing, knowing that some days are better than others. If a Resident is able, Joan accompanies him or her on a walk around the Guest House or a visit to the garden. She is ready to listen, if they would like to talk. Perhaps to hear their story; definitely to learn from their insights.
Many times a Resident doesn’t wish to speak. Joan rests her hand on their forearm. She doesn’t ask permission; rarely is her hand brushed away. Joan understands the profound power of the simple human touch. It is mutually satisfying.
Joan discovered Zen Hospice Project in 1995, at the height of the AIDS epidemic, while accompanying a dear friend seeking a place to die. In a time of enormous fear and great lack
of knowledge about the disease, the Guest House was a rare place of understanding and solace for those wanting to die with dignity. Almost immediately she felt that hospice work would be her heart work; upon learning of volunteer opportunities, she applied, was accepted into the program and began her training.
Joan has volunteered for over 20 years at Laguna Honda Hospital and at the Guest House since 2010. With her background in business and in renovating houses, she was a natural choice to help the renovation of the Guest House, overseeing contractors during the multi-year process. She speaks warmly of contractors generously donating above and beyond their bids, giving time and materials to this most worthy project.
Volunteer caregivers arrive for their shift with no agenda other than to meet each Resident where they are at the moment. The concerns of the rest of the world wash away quickly, and then they are completely present and ready to give openly and compassionately to others.
Joan says goodbye to each Resident at the end of her shift. She often thinks “but I am just getting to know you”, yet she closes the Guest House door behind her fully understanding they might not be there when she returns the next time. And that’s okay. She made the connection and they felt it.
Joan believes death is the greatest teacher. She has learned much over time, and yet knows there is yet so much to learn.
For those of you who would like to consider becoming a Volunteer Caregiver at Zen Hospice Project, please click here.
Mary Doane, Educator, muses about Zen Hospice Project’s Mindful Family Caregiver Program
“It is challenging in the best possible way!” Mary proclaims, as a senior instructor of the Mindful Family Caregiver Education Program, launched by Zen Hospice Project in late 2017.
A core faculty member of the education program, Mary first explains that designing and refining the curriculum has brought to her new levels of respect for her colleagues. Her admiration has grown even deeper for people she was in awe of to begin with.
In the Mindful Family Caregiver courses held so far, Mary’s says her primary experience is that of being moved. She has been deeply touched by what today’s family caregivers are contending with. While she’s had some personal experience, in addition to her lengthy professional background, Mary had thought she somewhat understood the full extent of the caregiver experience. “But to be in these classes now,” Mary shares, “To witness people, to see them, to hear their struggles and to feel the overwhelm that people are dealing with… it is truly humbling.”
It is clear to her that the Mindful Family Caregiver Education Program is responding to the enormous and unique need of support for family caregivers. Mary is honored to be part of a program that meets this need in an effective and conscious way.
Speaking further about the Family Caregiver experience, Mary says, “A major challenge family caregivers face is the feeling of being alone – alone in their struggle. What we are finding in our classes is that most people feel isolated in their caregiver role. They don’t feel seen, they doubt if they’re up to the task, they feel overwhelmed and exhausted.” Hesitant to reach out to others, many caregivers don’t want to burden their friends and family by “venting” all the time.
What can best help in this all-to-common situation? “Reminding people of their own inner resources,” Mary has realized. “Each one of us has these inner resources, such as compassion, self-compassion, patience, and connectedness in a broader sense. In our program we offer Family Caregivers ways to access and trust these internal resources… either again or for the first time and to be witness in community with other caregivers.”
Learn more about our Mindful Family Caregiver Education Program here.