I was privileged to have spent time in a similar facility in Boston as they cared for friends, family and loved ones. Every day our loved ones spent in this caring community was a gift, to them and to us. I've since learned that the facility has closed down, for reasons similar to the ones described in the article: not enough donations and not enough scale, with only six beds. There is an attempt to replicate the model in various hospital settings but the sense of being at home is gone.
2
Zen Hospice Project is alive and well and living in San Francisco! It is not dead. It has not gone the way of so many other worthy not for profit organizations. However the shining jewel of the Guest House has been plucked from our tiara!
I had the privilege to volunteer at the ZHP Guest House for two years before its demise. I, like many, have my opinions about the causes and conditions that led to the closure and sale of what was an amazing beacon for end of life care.
A jewel like the Guest House requires a rigorous army of protectors and champions. It is astounding to me, that there wasn’t a passionate, raging wave of activity to develop and secure an endowment that would have not only stabilized the future of the Guest House, but afforded the development of a blueprint program to help communities anywhere and everywhere to create their own Guest House haven. The realities of our world make places like the Guest House unreasonable and impossible to maintain. The simplicity of scale – six beds – it is too little for such great need. And yet for a time it was a shining example of what is possible.
Moving forward as a ZHP volunteer it is my hope that we find a way to serve the larger community of family caregivers. The training that ZHP offers is profound and useful. There is much that this organization has to offer to the conversation about how to support the well-being of family caregivers; of which, there are currently approximately 45 million in the United States.
11
It seems to me that this sad and interesting article illustrates a widely experienced gap between, for want of better labels, what I would call the business mentality and the care giving mentality. In too many cases, neither understands nor fully respects the other. Business-minded people focus on more, bigger, financially better. Caregivers focus on care, feelings, and economic and personal self-preservation. I think this is a bridgeable gulf, but it requires conscious and humble attention from both sides.
8
There is only a limited amount of funding for all these organizations and the competition is fierce. And non-profit may not seek profit, but there are expenses to pay and salaries.
Unless such an organization can find a rich, long-term patron, it is hard to survive over a long period of time.
Those running non-profits need many skills; however, if they truly excelled, and no disrespect intended, they would be running profit-making endeavors. That is where the real money and power is.
I know that there are tax and other issues, but sometimes there is a logic to non-profits finding a way to make a profit and thus to secure their survival.
1
I also trained, volunteered, and was on staff at Zen Hospice Project - and I continue through teaching in its Education and Training programs. While Zen Hospice Project continues to offer programs to contemplate our shared mortality, and to those desiring support in their caregiving roles, or to those professional healthcare organizations who want to support their caregiver staff, learning how to do the work of dying is the educational experience our society so deeply craves. While many places in the world share ritual and tradition, religion or spirituality, to give death its rightful place on the human stage, our American culture has suffered from keeping death in the dark. But the shift is finally occurring, because our aging population is requiring it from us. We celebrate birth. We have classes to teach us how to become parents. Now we get to meet the anticipated equilibrium - and dare we say - celebrate all that it can teach us.
For all of the deaths - within us and beyond us - that we've witnessed at Zen Hospice Project, its merit continues to ripple in the world. The root is how to care, grieve & die mindfully - by meeting all that death brings us. Every human deserves what can be learned through these teachings. I'm so thrilled that we get to continue this work, even with the death of its beloved house.
8
As the interim executive director at Zen Hospice Project and long time member of this community, it feels important to comment … The demise of our beloved Guest House facility is a huge loss for our community. I hope the amazing work that took place there is not overlooked by its closure. I am confident that the Guest House will continue to inspire many to create a place and the circumstances where anyone from any station of life can die with dignity and love. Our organization lives on and our amazing volunteers continue to support this type of death through their service at Laguna Honda Hospital's Palliative Care floor. The ZHP program there predates the opening of the Guest House and continues uninterrupted. And, we continue to share what we have learned at the Guest House and at Laguna Honda by supporting burdened caregivers with our Mindful Caregiver Education program. The Guest House may be gone, however there is still work for us to do. Like all deaths, space has been created for something new to be born. www.zenhospice.org
22
I volunteered at the Guesthouse from 2002 to 2004, when it closed for renovations (reopening in 2010), and from 2017 until its recent closure. It was indeed a special place, unlike any other. But the Guesthouse and Zen Hospice Project are not coterminous.
To imply that ZHP is closed or failed because of the loss of the Guesthouse is to ignore that the majority of ZHP volunteers undertake their (our) volunteer commitment at Laguna Honda Hospital, in the hospice/palliative care ward, to which I transferred last year. At the Guesthouse, there were 2 volunteers per shift, 3 shifts per day, 7 days per week. At Laguna Honda, volunteer shifts can be up to 5 or 6 volunteers, so ever since ZHP began providing volunteers to Laguna Honda Hospice ward, the majority of ZHP volunteers have served there. Accordingly, ZHP is still alive and well, albeit only in one location (currently).
Laguna Honda is a miracle, and I am so proud to live in a city that cares enough to vote in favor of a bond measure to rebuild it -- the new facility opened in 2010. Think of it: a 1000-bed facility for the indigent! What a beautiful thing that is! -- and to be involved with a volunteer program that transforms the lives of those who participate and those who allow us to serve them.
The Mindfulness Caregiver Education and Open Death Conversations have an online component but are also in-person. Anyone with a heart can benefit from participating in these and anyone who is not immortal should do so.
19
As a volunteer who served at the Guest House up until the time of its closure, I would like to thank this community for their thoughtful comments and also address potential misperceptions.
First, Zen Hospice Project has been in operation for over 30 years, always as a non-profit, and remains in operation today providing volunteer caregiving at San Francisco's Laguna Honda Hospital and offering mindful caregiver education to support family and professional caregivers in providing care that improves outcomes for both caregiver and care recipient. While the Guest House has closed, Zen Hospice Project remains as committed as ever to improving the caregiving experience.
Also, Zen Hospice Project, even at 6 beds, was not focused on growth or branding, but rather, on becoming financially sustainable. The Guest House provided 24-hour nursing care, home-cooked meals, and 3 shifts of volunteer support to residents. Without medicare reimbursement, it was simply not feasible to rely on donations to maintain daily operations. No one at Zen Hospice Project was focused on profits, rather on creating a sustainable business model that would allow for continued operation so that as many people as possible could experience compassionate care.
Finally, as someone who has worked in corporate environments for the last 25 years, I can easily and honestly say that the Zen Hospice Team is LEAN. This was not a case of administrative overhead or egos winning out over the organizational purpose.
10
Intriguing and thought-provoking article.
Missing one really big piece - the phrases "nonprofits or "not for profit" are missing having the correct word on the end: "corporation". This is a key part of the enterprise, traditionally with a charter, declaration of purpose/existence and bylaws. Usually governed by a panel of board members who appoint the executive(s). A board that is responsible and answerable to shareholders if they are defined. If not, answerable to customers/clientele (vaguely) or no one.
Lots of room for falling through the cracks when organized loosely this way and with no profit as the bottom squiggly line. Add to that, as a mentor once told me - "You may love the institution, but it doesn't love you back."
2
I'm so sorry to learn of the ZHP closing. In 2016 or so I took a very interesting three-day course on mindful caregiving there, and attended a Death Cafe as well. It was a beautiful, peaceful place. Meanwhile, just a few blocks away in Hayes Valley, a for-profit facility is raking in the dough (my neighbor was paying $7K/month for his wife's room and board), and providing little to no care in a dirty and depressing environment.
3
Thank you for an insightful article. I have had a direct connection to Zen Hospice as my spouse passed away there. Volunteers were such a huge part of our family's experience. Every single nurse we met was exceptional.
What really caught my attention were the statistics on the demise of so many non-profits. Bringing attention to these statistics and possible reasons for a non-profit to decline makes this article far more wide reaching than the ending of Zen Hospice. I hope many people in the not-for-profit world have a chance to read and absorb the lessons herein.
8
As a former board member of ZHP, I appreciated Ms. Martin’s sensitive analysis. I would add an important missing piece, however. As a residential hospice program, ZHP was not eligible for hospice payment from Medicare. That’s bad public policy. Charity alone is not sustainable for the services we provided but we provided great value and comfort for our families. And ZHP should have received at least the same reimbursement that institutional providers receive. In the end, that was determinative.
72
Regular volunteer work is really, really hard.
12
The Hospice movement started as non-profit and there was a spiritual atmosphere and commitment that early Hospices brought to the dying process.
Now, unfortunately, the majority of them are for-profit. And the profit motive, along with the proliferation of hospice start-ups wanting to get in on the Medicare money, has resulted in care which is subpar compared to the original, non-profit, caring zeal of Hospice.
I have a dying husband. We’re fortunate to have a truly caring Palliative Care outpatient team and an inpatient palliative unit should he need hospitalization before or during the end.
This article is just one example of the demise of the original type of care Hospice stood for.
38
I had the honor of working at Zen Hospice Project for ten years until about four years ago, and reading this piece brought back to me all the joy and sweetness I experienced as a volunteer caregiver. Not only was I able to support the dying in a complete way, but I broadened my spiritual practice in the process. Through their remarkable training program I learned about being with all that comes our way, even the heartbreaking losses.
I left ZHP when it became clear that expansion and branding took priority over mindfulness practices and the communion we volunteers felt with our patients, staff, and with that grand old house on Page Street. I was deeply sad when I left, as the place and all it embodied had changed my life forever. I knew it was time to go because it felt there was little room for my input (and that of many others) as a volunteer. It felt the original vision had been discarded somehow. It had gone from being a true community to becoming a business.
The demise of this refuge on Page Street represented a great loss to the city and to all those who need end of life care in San Francisco. I want to express deep thanks to the writer for this deeply thoughtful and articulate essay about a remarkable institution.
76
From my up close observations of nonprofits I agree that sometimes their mission just becomes obsolete. I do think in some cases there is another reason for the typical lifespan. It does not appear to be the case with the Zen Hospice Project, but there is a phenomenom known in the nonprofit community as "founder's disease". It can have a variety of symptoms but the underlying cause is that as the organization grows the founder of the organization holds tight to many of the reins long after they simply cannot manage everything. It often manifests itself when the founder does not appreciate the necessity of addressing administrative or financial tasks and does not delegate them, not atypical of entreprenuerially oriented folks. Some founders are secretive even with their boards until the financial or HR stuff falls apart. Sometimes it is simply an issue of inadequate succession planning as the founder ages. Of course none of these issues are unique to nonprofits but if the founder keeps tight control the necessity of the nonprofit adapting to changes in their world is less likely to be acted upon.
20
The author mentions in passing that the founder of the group left and was replaced by someone else. I believe that this is what causes many successful nonprofits to fail. A single dedicated/charismatic person who has the vision and the ability to share that vision with donors can create a wonderful organization. However, once the organization is up and running, the creative visionary moves on to a new project---and then there is no one to keep the vision alive.
28
For those who may wish to emulate many of the best features of the Zen Hospice Project's approach and care methods, this book may be helpful:
https://www.amazon.com/Golden-Room-Practical-Guide-Dignity/dp/1481990373/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1551206259&sr=8-3-fkmrnull
11
"the 5 percent most seriously ill Americans cost 50 percent of health care spending"
This sort of statistic betrays flawed thinking.
We all die. Should some get help, but others be deemed just too expensive to bother with? Who is that going to be?
It is a way of writing off many of those who need care the most, as not worth it. We can be sure the elite won't get that treatment, only those who pay all the taxes and do all the actual labor.
4
@Mark Thomason, No one should be "written off" but as someone whose 62 year old spouse was clearly terminal several months before he died I'd say there may be a time when everyone should agree to stop heroic measures. At about that point he, his doctors and his family opted for palliative care rather than more drastic intervention. He came home but as the end approached he went to his native Brooklyn, to Calvary Hospital's outpost there. Admittedly it is a rare place, licensed as an acute care hospital but providing palliative care only. It was immensely less expensive than a hospital ICU would have been and fairly closely akin in cost to inpatient hospice. Earlier on he had spent time in an ICU. This end of life experience at Calvary was so much better than the ICU would have been.
31
@carol goldstein -- I agree. My Aunt passed in a hospice, and I was present. It was a good thing.
My mother died at home, after heroic efforts at great expense had gotten her another 16 months.
What I fear from these words is a trend to give up on patients like my mother. I was and am grateful for the efforts to ease the way for my Aunt.
3
I spent more than 7 years as an RN at a non-profit hospice. When I started, the executive director and assistant director were nurses. Caregiver morale was very high. Better than any I had experienced as a nurse in any setting. A couple of years after I went to work there, the director I hired in under moved on to teaching nursing at the local community college. Her replacement was not a nurse by training. Morale decline began. About a year after I retired, that director was summarily dismissed and was replaced by her assistant executive director, an accountant. I made a point of dropping by to visit the staff as often as I could. It was obvious that the trajectory of the hands-on caregiver morale had continued to decline. A little over a year after I left, The best friend I had there, also a nurse, resigned abruptly, giving no notice. She never said why.
I had always gotten along well with the new director, but the comment in the article about "culture eat[ing] strategy for breakfast" pretty much nailed the problem down in just four words. Of course non-profits must watch finances, probably even more closely than the for-profit agencies. But when bottom line becomes the culture, the strategies that the caregivers had been accustomed to using with our patients became less important than the ledger.
Hospices are a category of their own, true, and as such I firmly believe the best person to have in charge is not necessarily the one with the best business sense.
41
What a sad story.
Why didn't more people believe that running the place with integrity and compassion with only six beds was "good enough"?
I hope we hear more from Frank Ostaseski. It sounds like he has much to teach us.
14
Ostaseski’s book, The Five Invitations, is worth reading. Commended.
9
It is hard to believe that in the most "woke" geographic area in the country, with the most people committed to social justice and the struggles of those with less power, that an institution like the Zen Hospice Project could not find the funding, volunteers, and community support to persist.
15
@Observer of the Zeitgeist
Some of us in CA living near San Francisco are of the opinion that we may be the most "woke", however, we woke up on the wrong side of the bed.
1
While I spent the last month of my mother's life with her, I missed the last night...the night of her death. She spent that night cradled in a hospice workers arm who called her "Mama".
The worker's name was Charity.
50
@RonRich
Sometimes people wait to die until their loved ones are there, and sometimes they wait to die until they have left, as my mother also did.
48
Interested in a study on the effects of TED Talks. Admit I've always been suspicious of the self-congratulatory nature and tone of them as well as that they seem to receive very little scrutiny of any kind.
They tend to let one person take credit for what is in many cases collective work. Making one person the star can be corrosive to any organization but particularly small ones.
43
I’m a retired hospice social worker and trained end-of-life doula who had the privilege of attending a seminar given by Frank Ostaseski a few years ago. What he and the Zen Hospice Project offered people was the ideal, good death, and quality care that continued as long as it took for life to end. From what I’ve read, the Project wasn’t Medicare Certified which would have reimbursed for the care provided yet would require that strict, almost algorithmic, guidelines be followed to ensure compensation. However, this omission gave them the freedom to meet the needs of their patients for whatever length of time needed. Given the choice, I think most of us would rather experience our final days focused on living, loving, and preparing for a peaceful transition. The closing of the Zen Hospice Project is a huge loss.
I’ve also been a program manager in the not-for-profit realm and I can tell you that fundraising was a full-time job in and of itself. Funders focused on outcomes (not outputs) that were not always easy to prove, sustainability, and a return on their investment. It’s no wonder that many organizations now have CEOs and CFOs instead of Executive Directors at the helm.
30
For those who are interested, the Living Dying Project in the Bay Area is a "hospice without walls," solely staffed by vounteers who have participated in an initial training. The volunteers are well supported by a bi-monthly support group facilitated by the founder, Dale Borglum.
14
@John
And for those who are curious, they can check out the Living/Dying Project website...
https://www.livingdying.org/intro/
2
>>And herein lies another lesson: Don’t underestimate the psychic toll of your organization’s work on the workers.
Wise words. I'd also add, "Don't overestimate the psychic toll of your organization's work on the workers." I support a group that performs in a children's hospital, a group that spends a great deal of time (and money) on "emotional hygiene." After years of watching the group undermine its mission with internecine conflicts, I've begun to suspect that one cause is an institutional culture that focuses more on the workers than on the work.
15
your gentle wisdom and the valuable insights of this piece will be shared with many. thank you.
12
Courtney, How tender for you to write this story, weaving together the demise of the Zen Hospice Project and the struggle of non-profits. Helping others to die as mindfully as possible as well as wanting others to help me to do this is close to my heart. Blessings in your work, Joy
25
I believe that more small nonprofits, instead of trying to grow to justify their infrastructure costs, should time-share executive directors and management with other small nonprofits.
13
@common sense advocate, In my personal experience as a volunteer "CFO" with 3 smallish nonprofits after my fairly early retirement I would say this is particularly true on the financial side. Once they start having employees beyond the founder they need someone beyond a bookkeeper way more than once a quarter. In some cases that might be a board member.
Founder's disease can be an impediment to getting the right management in place.
12
Frank Ostaseski, one of the founders quoted here, wrote "The Five Invitations: Discovering What Death Can Teach Us About Living Fully," 2017. A wise, moving, down to earth guide to end-of-life issues; one of the very best in this field.
24
Thank you for the update of your piece from August 2015, which I recall reading at the time of publication. I find particularly revealing your reporting on the experience of volunteers as the organization's three decades of maintaining six beds drew to a close.
6
The vast majority of so called non-profits, while non-profit in name and on the accounting books, generate fat profits for the individuals leading them. They are just tools of enrichment or tools of political leverage.
3
@Ronald Weinstein
I would be very interested in knowing the source of the claim you are making.
Guess I worked I the wrong places . . .
12
@Ronald WeinsteinI have spent over 40 years working in and for non-profits ranging from a major museum, to child and family care programs. In all instances, the institutions just barely managed to stay afloat, the dedicated highly trained staff members worked for mediocre wages and were able to sustain themselves in communities with high living costs, if they lived in shared housing, with parents, or spouses with sufficient income. Mr. Weinstein, it would be helpful for you to mention the non-profits you allude to.
8
@Nancy Record Sure thing. Here's a small selection, from publicly available information.
Wounded Warrior
Breast Cancer Relief Foundation
153 corporations related to the Church of Scientology
National Veterans Service Fund
Americans for Prosperity
American Future Fund
If you know how to use a search engine you can find many more
2
I think this is the most important sentence in the article:
"The default assumption seems to be that if something is working well, it should grow."
Why is this the default? I have seen so many businesses, restaurants, stores, non-profits that were doing just fine and then when the decision was made "to grow," everything went down the drain. Why can't we realize that lots of different sizes are needed and bigger is not always better.
It makes me sad to know that Zen Hospice is no longer and that the "default assumption" was a big part of its demise.
61
The problem with the "default position" is not that "if something is working well, it should grow," but rather, if "something is working well", it naturally grows, or becomes something else, or withers and dies. In my own very limited understanding of Zen meditation, I believe that through meditation, one learns to watch and soon observe that nothing is static, everything changes, including, in this case, seemingly wonderful non-profit organizations.
13
Thanks, a very moving article raising insightful questions. We are always working with the questions.
15
Wonderfully humane and informative article. As a journalist, I have reported often on death and dying. For those who might be interested, here is one on spirituality and the dying process, featuring Ram Dass, among others.
http://www.audiobyadam.com/2010/spirtituality-and-the-dying-process/
17