Category: End-of-Life Care

Abode Contemplative Care Texas, Community Hospice, Death and Dying, End-of-Life Care, End-of-Life Doula Certification, Hospice, Social Hospice

Support for Dying via Social Hospice – A Snapshot from Abode Home, Texas

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What is social hospice?

In the U.S. a social model of hospice (SMHh as written in academic and medical journals) is described as a dedicated home with 24/7 non-medical personalized care for end-of-life when dying at home becomes unmanageable. It is a non-profit service, often at no cost, in collaboration with support from a medical hospice service (usually the Medicare hospice benefit). It is sustained by community philanthropy, usually with a large base of volunteers devoted to comfort care and the gentlest passage possible.

In other words, end-of-life support by the people for the people.

Social Hospice Model

Social models for the dying have been recorded since 3000 B.C. (ancient Egypt). Every continent has had and still has some form of community care for the dying.

In modern times, the term social hospice was part of an obscure movement following the “good death” or “death with dignity” efforts of the 1950’s and 60’s. The goal was to return the dying process and choices to the individual.

The first U.S. hospices of the 1970’s were non-profits. Their mission was to create a caring, supportive environment in a residence specifically devoted to end-of-life care. In the 1980’s, social hospice for HIV/AIDS came into existence. The model includes grief and bereavement support for families.

The current U.S. landscape is dominated more and more by for-profit hospices and conglomerates, often funded by Wall Street players and private equity focused on high profit margins.

There are not as many community-based offerings as there once were.

****This situation may reverse and evolve based on growth in preparation for dying education, the end-of-life doula movement, and more awareness about the benefits community models provide. Why? Because they provide an unmet need.

Where may you find a social model hospice in the U.S. and who is social hospice for?

The home I know best, as I have participated in their on-line educational gatherings, is Abode Contemplative Care for the Dying in San Antonio, Texas.

Abode Home is affiliated with the Omega Home Network (based in Tulsa, Oklahoma), the largest U.S. social hospice network promoting the development and expansion of community homes for the dying. There are currently 74 homes found in 27 states, others are in development. https://www.omegahomenetwork.org/

Omega Homes generally receive solo agers who do not have support for dying at home, the dying whose family no longer has personal or financial resources for 24/7 care, and the homeless.

Here is a bird’s eye view of Abode Contemplative Care Home in San Antonio. There are others just as precious. Photo below courtesy of Abode Home.

Even though I live in both California and Mexico focusing on services for senior care and end-of-life, I continue to follow how others create and sustain community care.

I wish such sustainable community care would be available in every country and to every individual.

As a solo boomer (no spouse, no children, no fallback) I have been contemplating my demise for more than 25 years – yes, I believe in planning ahead when possible.

If I lived in Texas I might choose Abode’s sacred, supportive care based on the energy of light of the Executive Director, the Board of Directors, the staff, the End of Life Navigators, and the volunteers.

With great pleasure, I have participated in Abode Home’s on-line discussions hosted by Executive Director Mary Thorsby who welcomes all open-heartedly. She and her team send out meaningful, inviting newsletters, quarterly reports, and raise funds to sustain their generous service.

When I first learned of Abode Home I was attracted by the pastoral-looking watercolor rendering, photos of the garden, the words contemplative care, but most of all Abode’s transparency and community engagement. 

The home is a sanctuary – a quiet dwelling surrounded by nature with an intimate atmosphere, light in each of the six rooms, and, an inclusive presence.

Abode Home collaborates with about 20 different medical model hospice providers who send physicians, nurses, and medications.

Comfort care is provided 24/7 at the residence by five full-time staff, four part-time navigators, and 70 volunteers (15 of whom are Board members) in eight hour shifts. “It’s a grass roots team effort different from the medical model, and, it’s a mission,” shares Executive Directory Mary.

Abode Home is celebrating its 10th year serving the public.

Here are some of Abode Home’s supportive activities for their end-of-life guests and the community-at-large:

Bedside yoga

Book Club – book study with End-of-Life titles

Caregiver guidance for supporting oneself through caregiving

Contemplative Drumming

Education via on-line Zoom meetings and gatherings at the home

Death Café second Saturdays of the month

Dementia series with speakers from the community

Dia de los Muertos celebrations each fall

EOL (end-of-life) Doula trainings and EOL Doula Certifications – teaching others how to be with dying and dispatching them to the community-at-large

Fundraisers – a yearly Spring Art Show & sale; a fall online BIG GIVE

Luminarias lit in paper bags on stone walls around the property every December

Meditation via Zoom

Pull Up A Chair Dinners – highlighting alternative therapies for End-of-Life comfort

Reading of Names on All Souls Day, November 2

Sound healings

Staff and volunteer training

Threshold choir

Yes, donations are welcomed and appreciated.

See www.abodehome.org/donate, write info@abodehome.org, or see their Facebook page at https://www.facebook.com/ABODEcontemplativecare

Note: According to the National Vital Statistics System, about 35% of Americans die in hospitals, down from 48% in the year 2000. Almost 30% die in nursing or hospice homes. (This statistic does not include dying from a sudden accident, cardiac arrest, or stroke).

Social model throughout the world:

The social model has existed for millennia in various forms following cultural preferences and traditions.

“Egyptians, Orientals, Greeks, and Romans all used churches or temples as refuge for the sick or for pilgrims. Care of the sick was the responsibility of those believed to have special talents as healers, those who felt it was a religious duty, or diploma physicians who learned their craft based on scientific knowledge at the time,” writes Cathy Siebold in The Hospice Movement: Easing Death’s Pains (Twayne Publishers, New York, 1992).

Buddhist Emperor Asoka of India, (273-233 B.C.) known for a humanitarian approach to governance, created 18 shelters for aging, disabled, ill, and poor pilgrims who came to die and be cremated on the Ganges River. As we know, such homes exist now though they are mainly used by Hindus.

According to Wikipedia, historians believe the first “hospices” originated in Malta around 1065 during the Crusades. They were run by nurse nuns.

Summary:

The social hospice mission is to enhance quality of life to the end of life with compassionate care in a sacred manner regardless of ability to pay.

Local, direct, loving acts of care during life and at end-of-life are the foundation for a flourishing community.

© Wendy Jane Carrel 2024

Wendy Jane Carrel, MA, is a Spanish-speaking senior care advocate from California. She has travelled Mexico for several years researching health systems, senior care, and end-of-life care to connect Americans, Canadians, and Europeans with healing options for loved ones. She is a compassionate companion and palliative care liaison, legacy writer, co-founder of Café Mortality Ajijic/now Death Café Ajijic and founding member/speaker of the Beautiful Dying Expo (USA). She is a trauma-informed, gentle End-of-Life Doula (National End-of-Life Doula Alliance proficient), and a speaker and published author on subjects related to senior well-being. Wendy’s web site is https://www.WellnessShepherd.com

Resources:

https://www.omegahomenetwork.org/homes/ with a map of locations in the U.S. Scroll down to see the list plus website links to each.

https://www.youtube.com/watch?v=U7tHPCjEs7c  Marty Bazelak, MD, palliative care physician hosts guests from Clare House, Tulsa, OK, founders of the Omega Home Network of social hospices.

https://journals.lww.com/jhpn/abstract/2021/10000/social_model_hospice_home__a_concept_analysis.13.aspx  Social Model Hospice Home

https://journals.lww.com/jhpn/abstract/2023/10000/experiences_of_homeless_recipients_of_social_model.10.aspx

https://theprint.in/pageturner/excerpt/king-ashokas-hospitals-to-rural-health-mission-how-the-indian-medical-system-evolved/746649

https://history.stackexchange.com/questions/61776/did-the-emperor-ashoka-really-build-hospitals-or-is-that-a-myth

https://www.businessinsider.com/photos-varanasi-india-city-of-death-tourism-2023-6#the-city-is-dotted-with-ancient-temples-there-are-an-estimated-3600-in-total-5

https://en.wikipedia.org/wiki/Hospice

https://www.propublica.org/article/hospice-healthcare-aseracare-medicare “Endgame: How the Visionary Hospice Movement Became a For-Profit Hustle”  …… plagued by exploitation.  By Eva Kaufman, November 28, 2022.

Hospices Have Become Big Business for Private Equity Firms, Raising Concerns About End-of-Life Care

https://cepr.net/report/preying-on-the-dying-private-equity-gets-rich-in-hospice-care/

https://www.cdc.gov/mmwr/volumes/69/wr/mm6919a4.htm# government report on U.S. death statistics from 2018 (not including, obviously, COVID death)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9255424

https://www.reuters.com/article/idUSKBN1YF2Q5

https://caringheartandhands.org/social-model-hospice-homes-can-change-end-of-life-care/  excerpt from book by Karen Wyatt, MD, hospice physician

https://eolupodcast.com/tag/social-model-hospice/   Karen Wyatt, MD, hospice physician host

https://en.wikipedia.org/wiki/Saint_Fabiola

Death and Dying, Death and Dying Conferences, Death and Dying Education, End-of-Life Care, End-of-Life Education, End-of-Life Planning

Beautiful Dying Expo 2020: Death and Dying Colleagues from 10+ Countries Advocate for Thoughtful Preparation and Planning for One’s Demise

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November 13-15, 2020 represented three full days of listening to and interacting with “conversations on the bench” via the new Hopin.com platform at the second annual Beautiful Dying Expo, produced by author and certified end-of-life midwife Michele Little of San Diego and San Francisco, CA.

Little, with co-host Kimberly C. Paul (filmmaker, creator Death by Design, and former hospice caregiver), guided an eclectic and worthy gathering of evolved, connected and compassionate folks dedicated to End-of-Life work. They shared best practices for advance health care planning, financial and estate planning, preparing for long-term illness or sudden illness, ancient traditions and rituals for end-of-life care, green burials, grief, and more.

Screen shot of Beautiful Dying Expo 2020 on-line with Kimberly Paul co-host and Expo Founder Michelle Litle

The expo goal according to Little?  “To help you see more clearly about what’s involved in this journey and to provide you with new perspectives, resources, and connections… All of us are devoted to this sacred space.”

Participating thought leaders were from Australia, Argentina, Brazil, Canada, Costa Rica, Mexico, New Zealand, Puerto Rico, The Netherlands, South Africa, and the U.S. According to Little, there were attendees from 35 countries from outside the U.S.

In addition to the seminars, Little created a public space for one-on-one video chats and personalized advice with physicians, nurses, ombudsmen, social workers, lawyers, scientists, psychologists, music thanatologists, end-of-life doulas, and others.

This historic period with COVID at the forefront, and great numbers of people dying not only alone, but unprepared and without their wishes known, has brought more awareness, reflection, and discussions about dying.

Several folks working with those who are ill, near end-of-life, or working through the aftermath have been collaborating with colleagues in an accelerated way. This expo is one of many gatherings and events on-line since the onset of the virus.

One common theme among presenters and care panels was love – “love in the time of COVID” to borrow from Gabriel Garcia Marquez – providing support in a compassionate, collaborative, gentle, holistic way plus approaches to accomplish this.

Because some presentations overlapped, many worthy presenters and their subjects were not covered. Here a few highlights:

Of note was palliative care physician and gerontologist Karl Steinberg (a speaker at the 2019 expo) whose valuable talk focused on the importance of a relationship with your physician to state emergency, long-term care, and end-of-life wishes ahead of time.  Steinberg is the current Vice President of the National POLST (Physician’s Order for Life Sustaining Treatment – known as a MOLST on the east coast). His expertise also extends to bioethics.

Screen shot of Dr. Karl Steinberg at Beautiful Dying Expo 2020 on-line

Another highlight was the session with Ken Ross, son of Elizabeth-Kubler Ross, the Swiss-American psychiatrist who normalized grief through many books, the most well-known of which is On Death and Dying. That particular book offers a model known as the five stages of grief. Ken Ross, a natural storyteller, was his mother’s caregiver the last 10 years of her life. He is carrying on his mother’s legacy through her worldwide foundation and foreign publication of her books. Ross regaled listeners with stories of travels to 20 countries with his mother.  He clarified that his mother thought grief happened in cycles, and continues – it is not a cut and dry five stages.

The Elizabeth Kubler-Ross Foundation of Mexico, headed up by psychologist and end-of-life doula Wilka Roig, a Puerto Rican by birth, gathered a group of colleagues from other Elizabeth Kubler-Ross chapters around the world – Rodrigo Luz, a psychologist and thanatologist from Brazil, Else Groot-Alberts originally from The Netherlands but residing in New Zealand, Dr. Laura Aresca from Argentina and Uruguay, Wendy Pineda of Guatamala, and Cynthia Frahne a German psychotherapist devoted to palliative care in Argentina.

Screen shot of slide show from Ken Ross of Elizabeth Kubler-Ross Foundation, see Ken in upper left corner under the street sign bearing his motther’s name

Verna Fisher, a social worker, gave an endearing and sensitive talk about how to discover what is unsaid with both patients and families, how to show up for others, and how to listen.

Keith Bradley of Final Exit Network gave a valuable talk about Advanced Health Care Directives for Dementia, and John Tastad, a thought leader in end-of-life ethics, shared about truth-telling in a gentle way.

The closing hour with Brad Wolfe, creator of Reimagine, was especially heart-felt. Wolfe spoke about the death of his cherished grandmother and what it means to love someone all the way to the end of their life. An especially poignant moment was when his father Jim Wolfe joined the talk about this delicate subject.  Reimagine is a platform to reimagine death. It has gathered over 65,000 attendees since its inception to discuss how to embrace life by facing death.  See https://www.letsreimagine.org/about 

Screen shot of Reimagine Founder Brad Wolfe with his father Jim Wolfe discussing delicate subject; Brad sings a song about beautiful dying

I was honored to attend and present at the first Beautiful Dying Expo last year in San Diego which you may read about here:

https://wellnessshepherd.com/2019/12/29/a-visit-to-the-beautiful-dying-expo-in-san-diego-california-2019/

Also see the expo’s Facebook page where you may listen to Michele Little’s informed interviews with some of the speakers.  Scroll down the FB page at

https://www.facebook.com/beautifuldyingexpo

For more information see https://www.beautifuldyingepxo.com, write to info@beautifuldyingexpo.com or call (760)944-7540.

Death and Dying Conferences, Death and Dying Education, End-of-Life Care, End-of-Life Education, Palliative Care

End Well, a Symposium on Redesigning the End-of-Life Experience, San Francisco, CA 2019

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The movement to bring the subject of mortality into mainstream conversation has been on-going for at least 10 years in the U.S.  As a result, the number of gatherings has increased.

The End Well Symposium, now in its third year and soon to be fourth, is a part of this movement.

The 2019 production in early December featured a star-studded kick-off with ABC-TV‘s The View co-host Meghan McCain sharing candidly and compellingly about the death of her father Senator John McCain. She feels everyone should have a discussion about this subject with loved ones, learn their wishes, and do the best one can to prepare.

Country singer Tim McGraw talked about the experience of attending his dying father. As a result, he joined the Board of Directors of Narus Health, a Nashville-based palliative care provider, “to ensure broad access to high-quality care during times of serious illness and through the end of life.”

There were 26 other speakers including author/facilitator/interviewer and social change maker Courtney Martin whose high energy and thoughtful introductions kept the day-long gathering proceed smoothly.

Shoshana Ungerleider, MD and philanthropist, whose family foundation is behind the End Well Project, graciously and discreetly hosted as well. She succeeded with her goal of introducing a cross-disciplinary line-up that shared her philosophy – death and dying is not only a medical issue but most importantly, a human issue.

Each speaker was unique and dynamic in his or her own way, contributing to the dialogue about creating quality of life for patients at any phase of illness in a variety of settings.

Public and private sector speakers were physician authors, technologists, caregivers, patients, one attorney/end-of-life doula/ordained minister Alua Arthur, spiritual leaders, artists, innovators.

Among the younger voices sharing stories this year were palliative care physician, author, USC Medical School professor Sunita Puri who gave a heartfelt talk based on her book That Good Night: Life and Medicine in the 11th Hour mentioning influences of family health, Hindu poetry, and the importance of word choice and words as tools . Yoko Sen spoke lovingly and compassionately about the importance of healing sounds at the end-of-life. Sen was a speaker last year as well. She is a musician, sound alchemist, and TEDMED speaker.

It was moving to watch Harvard-educated August de los Reyes, Chief Design Officer for Varo, roll onto the stage in his wheel chair to talk about his mission to improve the financial health of Americans through better services and mobile-centric design that include the disabled. De los Reyes was formerly at Xbox, Microsoft and Pinterest. His paralysis is a result of a hospital mistake. His positive energy despite his health condition is most inspiring.

Among the older adults were fine and funny writer Sally Tisdale, RN (Advice for Future Corpses and Those Who Love Them plus other noteworthy books and essays) whose talk was educational and supportive – tender care for dementia patients at end-of-life.

Jonathan Bartels, a UVA trauma nurse and palliative care liaison, spoke about how he created The Pause – silence in acute care settings, intensive care units, and emergency rooms to honor any person who has just died. His empathetic vision has been adopted across the globe and is now taught as a part of compassionate care education for healthcare workers.  See https://thepause.me/2015/10/01/about-the-medical-pause/

Marvin Mutch, son of a Holocaust survivor and a Baptist minister who spent 41 years in prison, spoke about inter-generational trauma and his work with end-of-life at San Quentin with the Human Prison Project.

Much admired San Francisco palliative care and hospice physician at UCSF, and former Executive Director of Zen Hospice BJ Miller (also with a compelling health history) spoke about his desire for more human-centered care for the ill and the dying. His newly released book, co-written with Shoshana Berger is A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.  See http://www.centerfordyingandliving.org for his mission statement.

Frank Ostaseski, author and revered Buddhist hospice teacher at End Well Symposium 2019

The piece de la resistance was the last part of the program, an interview with revered Buddhist teacher and hospice worker Frank Ostaseski, author of the popular book The Five Invitations: What Death Can Teach Us about Living.  After a life-time at the bedside of others, he spoke soulfully about the paradox of vulnerability – how he was being cared for following a stroke a few months ago.

For two years, the End Well Conference in San Francisco, CA required a $600 entrance fee for the day. This year founder Ungerleider and her board kindly expanded the conference to a live on-line all-day event for $25. This was a gift for those who could not attend because of commitments they have, or because leaving one’s city or country to attend requires extra resources and time.

See this link for bios to the presenters:

https://www.endwellproject.org/speakers/

See this link for videos of some of the TED-style talks:

https://www.endwellproject.org/watch/2019-symposium-videos/

Note: The Ungerleider Foundation financed the production of two fine documentaries about the end-of-life experience, End Game and Extremis, both available on Netflix.

Note no. 2:

There are many other such conferences and symposiums throughout the world, primarily in Australia and the UK, and others as far flung as India and Singapore. I intend to list some of the 2020 gatherings in another blog for those who are interested.

Also notable are small volunteer-driven gatherings of Death Cafes (55 countries), Death over Dinners, Conversation Project get-togethers, faith-based meetings, senior center events, and more on a continuing basis, usually monthly.

Wellness Shepherd  blog author Wendy Jane Carrel, with 20 years + of hands-on senior care and palliative care experience, is currently involved with a humanitarian mission in Guadalajara, Mexico, www.JuntosContraelDolor.com, the only 24/4 palliative care hospital with outreach to 100 families at home. She is also collaborating with www.HolaHospice.org , currently creating a senior home and hospice in the state of Michoacan, Mexico.

Caregivers, Death and Dying, Death in Mexico, End-of-Life Care, Senior Care Mexico

American Architect Creates Moving Medical Art Installation in El Sacrificio, Mexico

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In February 2019, El Ojo del Lago (The Eye of the Lake), an English-language publication at Lake Chapala, Mexico catering to 20,000 high season retirees from north-of-the-border, dedicated a section of its magazine to articles on End-of-Life.

Each contributor has worked in Senior Care and End-of-Life care for over 20 years. A piece I wrote was included. See the link (looks good there) or, you may read the copy below the link on this page.

https://www.chapala.com/elojo/february-2019/244-articles-2019/february-2019/4492-ode-to-love-and-care-giving-an-art-installation-at-el-sacrificio-mexico

ODE TO LOVE AND CAREGIVING AT A CHAPALA, MEXICO ART INSTALLATION

It is a notable synchronicity that “Transcendence – A Celebration of Those with Perseverance”, a medical art installation created by LK Gubelman (Leslie Katherine aka Kate), is located in El Sacrificio (the Sacrifice), Jalisco, Mexico.

Gubelman, an architect by profession, was caregiver to her retired and ill parents (mom Canadian, dad American) over the course of eight years at Lake Chapala, Mexico. Her creation is based on what she witnessed as she put her life aside to assist and honor her father and mother. The installation is also, she might share with you, how she has been meeting her irrevocable losses and sadness. The art has been her therapy.

The Transcendence exhibit in El Sacrificio is located inside “Los Conos”, cone-shaped granaries that continue to serve as art studio. Once you enter the big cone you cannot help but notice what is before you – six large scale works that required several years to complete (2015-2018) with the assistance of six men.

What will you see?

Depending on your own interpretation, the exhibit offers a way to reflect on life and death, from the point of view of the caregiver and Kate’s parents.

The largest of the pieces – THRESHOLDS – UMBRALES – is what you notice first. From the entrance, it resembles a beautiful stained glass window. Up close you see a symbolic body surrounded and connected by IV bottles filled with bright-colored water through plastic tubing. According to the artist, this piece is about time passing; each frame telling a tale of care given and the will to persevere. Every bottle was actually used at home.

Thresholds by Kate Gubelman

ENTANGLEMENT – ENREDO is a lattice work of medications, pills and pill boxes hung from the ceiling in suspended form, dazzling with crystal and beads linking one to another like Christmas decorations. Standing under it you cannot help but notice enormity of drugs consumed and what was required by caregiver Kate for medical management. All medication boxes and packets were used by Kate’s parents.

TRANSPARENCY – TRANSPARENCIA is a corridor of x-ray images, CT scans, MRIs mounted on translucent multi-colored panels described best by the publicist as “a tunnel of muted light and color…and a tale of medical machinery (cold steel) and the toll on all involved.” The names of Kate’s parents, Allison and Oscar, are on the panels.

Artist and caregiver Kate concludes, “there was no choice but to create the installation. It was a necessity, it helped my healing.”

Aside from honoring the wishes of her parents, and their lives, Gubelman bears witness to medical choices involved to keep her parents alive.  Somehow, she felt compelled during the caregiving years, to collect and keep pill packages, intravenous bottles, medical records, x-rays, and other mementos.

Little did she know at the time they would become the basis of her installation.

What might you discover or experience?

You may instantly relate to Kate Gubelman’s art pieces, or not. According to Gubelman there are a variety of responses. Many visitors, both gringo and Mexican have felt either saddened or amazed. Many find deep meaning, especially recent widows and widowers who have been caregivers themselves.

Visitors have called the installation captivating, thought-provoking, emotional, and loving.

There is a video of the art installation with visitor comments produced by Bradley Guarano of www.videoparami.com It may be found on this link… https://www.dropbox.com/s/9lh8iv861tb1lny/Transcendence.mp4?dl=0

At minimum, you may feel sacrifice and perseverance were involved not only for Gubelman, but for her parents.  An act of love? A comment on modern medicine? No matter your read, it is an immersive art experience.

Who might wish to see the exhibit Transcendence?

Caregivers, healthcare workers, perhaps those mourning the loss of loved ones, and, the general public

For more information or to schedule a private studio tour, please contact Bethany Anne Putnam 

bethany@lkgubelman.com
USA: 001.508.221.6430
MEX: +52.331.157.2300

You may discover more on the LK Gubelman Facebook page, or find photos of the exhibit on Instagram@ lkgubelman.

Caregivers, Death and Dying, Death and Dying Education, End-of-Life Care, End-of-Life Education, Hospice

All Volunteer Hospice of San Luis Obispo County Sustainable for 41 Years

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For the last few years I have had the good fortune to visit palliative care and hospice entities in California as well as in six states of Mexico with the objective of learning more about what works, what’s missing, and what might work in Mexico for years to come. There are challenges based on cultural differences, but all is possible.

I am comparing various models – hospitals and facilities (medical), in-home community outreach (medical and/or volunteer), all volunteer, government, non-profit, and for profit.

Hospice of San Luis Obispo County (HSLO) has been on my radar for some time because it is a successful, locally based non-profit volunteer hospice that has sustained itself for 41 years!! For those of you who are familiar with the operations of non-profits, this is an extraordinary achievement.

Aside from serving the public, HSLO educates and trains locals and others as end-of-life doulas (companions). They host Death Cafes and much more.

The sustainability is based on more than dedication and love – mainly inventive ways to engage the public, an especially hard task in a difficult economy.

Hospice of San Luis Obispo County, California office

I am so pleased I was finally able to visit HSLO. I am indebted to the Executive Director and the Director of Volunteers, the few paid staff, for a warm, meaningful, memorable exchange.

HSLO is one of six hospice services in a county with a population of around 284,000. It is the only volunteer in-home hospice supported by the generous energy of over 200 volunteers. They serve approximately 5,000 persons per year.

Any county resident with life-limiting illness is served through “in-home respite care, emotional, spiritual, practical and non-medical support, and grief counseling support (group and individual).”

Other services are education about dying and death for professionals, caregivers and the community, doula programs, Death Cafes, Threshold Choirs, and Pet Peace of Mind groups.

From my perspective their outreach and activities place HSLO in the vanguard of the “death care and the death positive” movement that is sweeping North America and beyond.  It is exhausting but rewarding work.

Additional treat: I was blessed to attend HSLO’s annual Light Up A Life candlelight vigil held at the San Luis Obispo Mission on a nippy, rainy evening. Names of those who have passed were read out loud during the hour service that included a choir. Later we carried candles outside for readings and prayers.

Light Up A Life Candlelight Vigirl, San Luis Obispo Mission, California

Anyone may pay a fee (fundraising) to have the name or names of loved ones read at Light Up A Life. This lovely event is repeated during one week in December in different cities of the county.

HSLO was created in 1977 and has an excellent reputation through word-of-mouth.

Services are provided without charge; no insurance company is billed. 

HSLO relies on community donations, fundraising events, grants, doula training fees, and the time of its over 200 volunteers.

Hospice of San Luis Obispo County is a remarkable operation.  So much goodwill!!  A great gift to the community.

The home which serves as office was bequeathed to HSLO by Dorothy D. Rupe; it bears her name.

1304 Pacific Street, San Luis Obispo,CA  93401  tel. (805)544-2266

http://www.hospiceslo.org/

HSLO is a member of the Better Business Bureau and is a Top Rated Non-Profit.

 

Hospice Physician Karen Wyatt
Death and Dying, Death and Dying Education, End-of-Life Care, End-of-Life Education, End-of-Life Planning, Health & Wellness Mexico, Hospice, Palliative Care

Death & Dying Education – A Chat with End-of-Life University’s Karen Wyatt, MD

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Award-winning author, podcast host, and hospice physician Karen Wyatt connects healthcare professionals and the public with information about healing options for the dying through End of Life University, which she founded in 2013.

Backstory:

For three years+ I have been dedicated to a palliative care/hospice mission for Mexico. Even though I am back and forth to California, I am continually on the look-out for how care and support for patients and families is being provided on a national and global basis.

What interests me are differences place to place as they relate to education for providers, physicians, patients, and families – what’s missing, what’s working, what options and perceptions about dying are offered. 

This is where Colorado-based hospice physician and thought leader Karen Wyatt comes in. She brings my quest to my computer in an open and engaging way through her END OF LIFE UNIVERSITY web site podcasts. Colleagues share experiences, feelings, information and wisdom about how they are advancing best practices for end-of-life.

Dr. Wyatt’s approach to death and dying is holistic, with a special emphasis on sacred and spiritual aspects of our transitions. 

The goal of her effort is a national dialogue for “creative healing… opening the heart of Western medicine.”  The podcasts, connections, and resources are a welcome gift not only for healthcare professionals but the public as well.  See www.EOLUniversity.com.

In conjunction with the university, Dr. Wyatt launched an on-line book club in January 2018, The Year of Reading Dangerously, where she introduces one book per month about an aspect of end-of-life, and, interviews the book’s authors live on-line. Participants type in questions on-line or ask via the phone line they are listening on.

 

Hospice Physician Karen Wyatt
Karen Wyatt, MD, Founder of End-of-Life University

Interview with Dr. Wyatt

Please share with us about your personal history, and, what led to your work in end-of-life care.

I trained to be a family doctor. I had no knowledge of death and dying or hospice.

Three years after my residency, my father died by suicide. His sudden death upended my world. I felt guilty. I had training in psychiatry and couldn’t save my dad. I floundered for a long, long time trying to get through the grief. Three years after his death, I still felt very lost. I was wondering if I would ever smile or feel joy again. Suddenly a voice said, “call hospice.”  It was my voice, and I have no idea where the message came from.

I didn’t even know if there was a hospice in the Utah community I lived in. I searched “hospice” and found one. I called and asked if they needed a volunteer. When they discovered I am a doctor they enthusiastically exclaimed “oh my goodness!” The Hospice Director, stunned, continued to ask “what made you call us now?” I just had an inspiration, I replied. The Director continued, “Our medical director resigned 30 minutes ago and now you’ve called us.” Just like that I became a hospice medical director. I was guided to this place, and I knew it for sure when I met the team.

What inspired the creation of End-of-Life University?  What led you to gather fellow end-of-life colleagues to share what they know with each other and the public? 

Years in hospice have brought me profound spiritual experiences. I have learned many lessons about how to live my own life. Hospice has helped me live a life of appreciation and that brought me to the decision to write a book.  Many patients had asked if I could tell their stories one day. I made a promise to do so.

 

End-of-Life Book
by Karen M. Wyatt, MD

Writing a book was a long process and is what probably inspired the eventual creation of EOL University. I began the book in 1999 and finished in 2010. I felt I must live the lessons of the book in order for it to be complete. The book was published in 2012 and it was then I realized for the first time that the population, in general, was resistant to talking about death and dying. It seemed people were not ready or open; it was the last thing they wanted to talk about. It was then I knew I wished to do something to change this, something different needed to happen.

Brainstorming led to the question, what else may I be involved with other than a blog or writing? (At the time, Wyatt was posting occasional articles on Huffington Post and in local newspapers). The year was 2013 and I began listening to on-line interviews on other subjects and realized no one was doing this on-line for death and dying. I started the research to find people to interview. It was fun, I loved it (and still do). I was learning so much and wished to keep it going. That was five years ago. I am grateful to the Internet and social media as networks for good.

What response did you receive when you first began End-of-Life University?

End-of-Life University is always a work-in-progress, unfolding. In the beginning I felt no one was listening to the interviews, and that no one cared. The interest grew slowly over time. I learned consistency is important, showing up regularly.  I followed the top web sites in Google search. I recognized ranking makes a difference. Over the years EOL University has gone from 200 to 4,000 subscribers. There is a lot of patience on my part.

I knew I was in it for the long haul, and it was the right thing to do whether I received validation for it or not. In the last couple years, whenever I’ve been at a conference, I kept meeting people who have been listening to the podcasts.  Some would say, “every week, your interviews got me through two terrible years when my mother died, or “I’m interested in working in end of life because of your podcasts.”  One of most important things I learned is that your heart tells you to continue, even if there are signs showing otherwise.  You don’t know the impact you are making, but someday you may find out. Always trust your heart. 

How did the concept of creating the book club with its engaging title, the Year of Reading Dangerously, take hold?

 I felt it would be important. There are so many books, and books are another wonderful way people can learn about death and dying. The goal is to reach people.  The concept of reading and discussing a different book each month had been with me for a while. So late one night I posted the book club on Facebook to see if there might be any interest. I was imagining maybe 20 persons might respond, and if so, that would be great. Well 150 had signed up! Now over 1,000 have signed up.  It’s never too late to join. The response has been so positive I am thinking about continuing the book club in 2019.

What I like most about the club are diverse points of view, completely different voices with unique perspectives discussing end-of-life. I owned some of the books and hadn’t read them yet. Some of the authors I had invited to talk about their books suggested others. Katy Butler, author of Knocking on Heaven’s Door: The Path to a Better Way of Death, suggested Megory Anderson’s book Sacred Dying: Creating Rituals for Embracing the End of Life. Ken Wilbur is a friend and I felt his story Grace and Grit would be compelling.

I find a lot of our listeners are going through their own personal struggles related to death and dying. It seems energetically powerful and perhaps healing if people around the world are reading the same books. There is something enormously attractive about bringing people a shared body of useful knowledge.

See https://www.eoluniversity.com/yearofreading

Dr. Wyatt has retired from her medical practice. Her focus is end-of-life education. She enjoys speaking to audiences across the U.S. and has discovered that “threads” connecting those who do this work remain strong. “Death has called us in and somehow we end up sharing our experiences with others,” she says.

The “death positive” movement has taken off in recent years. Dr. Wyatt’s End-of-Life University and her podcasts seem to be at the right place at the right time.

It was almost 20 years ago when Bill Moyers’ PBS series ON OUR OWN TERMS showed that those of us who tend to the dying wish “to assure patients they can have a ‘good death’ one that fits them, their families, and their culture.”  This is Dr. Wyatt’s mission as well. More people are now receiving the message.

 

Thought: What do you wish for your end-of-life?

Links where you can learn more or support the non-profit, all volunteer End-of-Life University:

www.karenwyattmd.com

www.eolu.com

www.patreon.com/eolu    donations to non-profit End-of-Life University

https://www.amazon.com/What-Really-Matters-Lessons-Stories/dp/0982685548/  link to Dr. Wyatt’s award-winning book

Death and Dying, End-of-Life Care, End-of-Life Planning, Green Burials, Home Funerals, Hospice, Los Angeles

Los Angeles Death & Dying Mavens Produce Educational Workshop June 2, 2018

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Death Positive in Los Angeles, California

Thank you fine women of the Order of the Good Death, Undertaking LA, Going with Grace, and Death Doula LA  for all that went into producing an educational death positive seminar for colleagues and the public at Atwater Playhouse in northeast Los Angeles, June 2.
For those of us who have been attending the ill since childhood, witnessing both sudden and prolonged deaths, and advocating in our own quiet ways for natural, holistic, spiritual energy for end-of-life care (honoring the wishes of the person whose life it is before/during/after), your fresh, energetic voices are welcome!!
It was encouraging to witness Gen X-ers moving forth with generosity, and a sense of community spirit, and a pleasure to listen to your presentations conveying authenticity and dedication.

Death & Dying Los Angeles presenters Jill Schock, Amber Carvaly, Alua Arthur

What transpired at the unusual gathering?

The engaged audience of 50 colleagues and others got to listen, meet, greet, and ask questions, based on experiences as family caregivers, hospice companions, end-of-life planners, and coordinators of arrangements for families. A few were contemplating a career devoted to end-of-life. Each person who participated has been drawn to end-of-life work through past circumstances (common among most of us).

Amber Carvaly, assisted by Susana Alba, also of UndertakingLA, demonstrates how to shroud

We met author and natural death mortician Caitlin Doughty of the Order of the Good Death and UndertakingLA; Caitlin’s associate mortician Amber Carvaly; end of life doula, end-of-life planner, and attorney Alua Arthur; and end-of-life doula Jill Schock who is also a hospice chaplain.  These ladies, age 40 or under, are passionate and powerful and demonstrate strong skills related to their work. Their goal: educate the public about green/natural alternatives and choices available at death, and, share why planning ahead can save energy, time, $$, and grief.
What pleased me most is discovering that even though the ladies make their living this way, they do not seem to be commercial.  Their focus is on giving back, and being present for the ill and their families. I also admire their ability to get the word out effectively.
They offered up-to-date information about California state laws and regulations, medical forms, home funerals, death duties, their experiences as morticians or alongside the dying, and, various options for burial, etc.

A worthwhile event and recommended for anyone interested when they host another seminar.

Wendy Jane Carrel, Senior Care and End-of-Life Planner, Mexico; Caitlin Doughty, author, founder of Order of the Good Death, and UndertakingLA

The photo above demonstrates Caitlin’s marvelous sense of fun. Her best-selling books, which I recommend, reveal her unique humor (find When Smoke Gets in Your Eyes, and, From Here to Eternity). Even though she sat in the audience during the presentation, she actively participated with the three main presenters (her colleagues), as well as the attendees.
Aging, Death and Dying, End-of-Life Care, End-of-Life Planning, Health & Wellness Mexico, Living Abroad, Mexico, Retirement

Death Café Ajijic, Mexico; Ex-Pats and Snowbirds Talk Gently about Mortality

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A group of American, Canadian, and UK ex-pats and “snowbirds” recently gathered for the first Death Café Ajijic, Mexico. There were 18 persons present at Café El Grano including an anesthesiologist, a hospice nurse, a hospice social worker, a psychiatrist, teachers, and others. There were two facilitators who work with end-of-life planning and transitions.

If the term Death Café (excuse the direct wording, I prefer Sacred Conversation) is new to you, you may hear it more and more.  Death Cafes or Café Mortels began with Swiss sociologist Bernard Crettaz who held over 100 such meetings in his native country until recently. In 2011, Jon Underwood, inspired by Crettaz, created Death Cafes in England (see history at http://deathcafe.com/what/  ).

These all-volunteer social events to discuss death and dying respectfully and informally (no agenda) are now held in 52 countries including Australia, Europe, Canada, the U.S., and parts of Latin America where death has sometimes, but not always, been a foreboding and scary subject.  Buddhist, Hindu, or Muslim countries, and places with indigenous populations tend to consider death a natural part of life and honor it as such more easily. Most café organizers work with end-of-life, and tend to focus on alternative, kinder, spiritual ways of departing. Note: There is a Death Café in Singapore.

“At a Death Café… our aim is to increase awareness of death to help people make the most of their (finite) lives,” states the Café web site. Most of all, the Café encourages an exchange of stories and perspectives as a way to embrace death.

What prompted a Death Café in Ajijic?

First, a number of retired ex-pats and visitors die in Mexico unexpectedly, and, they die without a health care directive and/or an end-of-life plan. There is a need for continued conversation and education.

Second, Loretta Downs, MA, has been speaking to locals at a popular venue, Open Circle (as well as at In the Heart of Awareness, the Buddhist center), about end-of-life for several years.  She flies in from Chicago every January to deliver her talks. About 300 + persons show up to listen as she encourages her audiences to become friendly with the idea of mortality and to prepare for it – think about it, and express to others what you want.  See http://www.endoflifeinspirations.com.

DSCN2635
Wendy Jane Carrel and Loretta Downs, End-of-Life Guides, Planners, and Educators; Co-Hosts of Death Cafe Ajijic 2018

Third, yours truly, Wendy Jane Carrel, MA, has been speaking to ex-pats around Ecuador for three years and subsequently in Mexico with the same passionate message – make friends with your demise, please make a plan.

It seemed natural for Loretta and I to team up to host a Café for Lake Chapala.

My interests had been reinforced as a result of volunteering two years at Juntos Contra el Dolor, the only 24/7 palliative care hospital and hospice in the state of Jalisco, a model for Mexico. I was given the gift of observing how painful chronic and terminal illnesses are treated, the politics of medicine, the politics of opioids, cultural difficulties related to dying, family constellations, and the difficulties of running a non-profit in a rich country (yes, rich in many resources) with little tradition of philanthropy. Most of all, I learned the concept of a “good death” requires much education and outreach in Mexico as well as at home.

Loretta’s friend Nancy Gershman, who produces Death Café NYC, gave us welcome pointers before the Ajijic meeting. We followed Nancy’s advice – small tables of 3-4 for intimate conversation, one of us (Loretta) to circulate and ensure participant exchanges were flowing, see that anyone who was recently grieving the loss of a loved one was comfortable, followed-up by an evaluation to learn what we could do better the next time.  https://www.meetup.com/Death-Cafe-New-York-City/

Cafe El Grano, nice partitions for intimate conversation
Cafe El Grano, Ajijic, Mexico – nice partitions and small tables for intimate conversation – also a most accommodating owner 😉

Because Loretta and I travel often, she is based in Chicago, and I in LA, we may not be producing other cafes until January 2019 unless another healthcare worker can pick-up in our absence.

Note: If you have not heard of Ajijic, it’s a sleepy Lake Chapala village, with a population of around 10,000, an hour south of Guadalajara. It is a popular tourist destination. Lake Chapala is home to around 20,000 full-time retirees from north-of-the border.

The DeathCafe.com web site indicates there are 9 death cafes in Mexico. I could only find one. It is located in Mexico City. See http://deathcafe.com/deathcafe/1695/ .

I have so much more to learn. I am now eager to return home to attend hospice social worker and end-of-life guide Betsy Trapasso’s Death Café LA https://www.facebook.com/deathcafelosangeles/   or Maggie Yenoki’s gathering in Pasadena https://www.facebook.com/deathcafepasadena/

References

https://www.counterpunch.org/2018/01/12/what-happens-at-a-death-cafe/   excellent overview of a Death Café gathering in Sonoma, California by Shepherd Bliss

https://www.theguardian.com/healthcare-network/2017/mar/09/death-cafe-learn-talk-dying-patients

https://www.washingtonpost.com/news/acts-of-faith/wp/2017/07/10/the-founder-of-death-cafe-has-died-but-his-movement-to-accept-the-inevitable-end-of-life-will-live-on/

https://www.facebook.com/DEATH-Cafe-Singapore-402018853254286/  a unique look at what Death Café Singapore is paying attention to

https://www.prospectmagazine.co.uk/magazine/take-me-to-the-death-cafe

Death and Dying, End-of-Life Care, Health & Wellness Mexico, Humanitarian Rescue Older Adults, Mexico, Pain, Palliative Care, Palliative Care Mexico

Mexican Palliative Care Team Juntos Contra el Dolor Conducts Medical Mission in Remote Oaxaca State

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Juntos Contra el Dolor, A.C., the only 24/7 palliative care and hospice service in the state of Jalisco, Mexico, leads a yearly (sometimes twice yearly) medical and humanitarian mission to assist the Mazateca (people of the deer) in remote mountain communities of Oaxaca state. The team is led by Juntos founder Dr. Susana Lua Nava, a thought leader in palliative care and hospice.

Palliative care in Mexico is generally provided by a team of doctors, nurses, social workers, psychologists, chaplains, and trained volunteers with the goal of relieving pain and creating a comfortable existence for patients physically, emotionally, and spiritually. An important part of the work is the educational component for families and caregivers. Hospice is an extension of palliative care for end-of-life.

This year a group of 13 Jalisco volunteers (two physicians, nurses, social workers, a nutritionist, and trained palliative care missionaries) drove from Guadalajara in a rented white van to the high Sierras of Oaxaca in southern Mexico. The trip took 14 hours. After arrival, they spent the night in a local church in Huautla de Jimenez, population approximately 32,000.  (See references and You Tube videos below for more info).

Juntos Contra el Dolor Medican Mission to Oaxaca
Juntos Contra el Dolor, A.C. palliative care team on humanitarian mission during Easter holiday to Oaxaca; man in red is Sr. Obispo Armando of Huautla di Jimenez; Dra Susana Lua Nava is in khaki vest; the woman on the far right holding palm fronds is a Huautla physician

Local Environment

Each day for nine days the team, divided into three groups, walked and climbed footpaths to families in the areas of San Andres Hidalgo, Chilchitlan, San Antonio, and Santa Carlota. Dwellings of each family are about an acre or more apart, sometimes kilometers apart.

There is no running water in the dwellings. There is no electricity except in rare instances. There is no natural gas. Wood is used inside homes and exposure to smoke can lead to respiratory illnesses. Some families do not have shoes.

The Mazateca homes, people, and clothing are clean and tidy. Personal hygiene is conducted with soap and small plastic bassinets of water.

“Although the trips are physically exhausting,” recounts missionary German Maria Becercil of Guadalajara, “they are an excellent reminder of how much I have and am grateful for – hot water, a refrigerator, a stove, and most of all my health.”

What was immediately noticeable to nutritionist Jorge Gonzalez Gonzalez of Tepatitlan, Jalisco, was the lack of food. Not enough food. This scarcity, he says, can lead to digestive illnesses – gastritis, colitis, stomach ulcers, pernicious anemia, and pyrosis (heartburn).  “Poor nutrition,” he continues, “also leads to low weight and low height, and metabolic illnesses such as diabetes and hypertension.” The mission hiked in with bags of food staples for the ill and their families.

Nutritionist Jorge Gonzalez w/Young Patient
Nutritionist Jorge Gonzalez Gonzalez with young Mazateca patient

Mazateca tradition of shamanic healing

The Mazateca culture holds unique health beliefs.

When illness strikes, they follow a tradition of shamanic healing with the use of “magic mushrooms” or salvia divinorum (a green paste made from a plant), mixed with cosmology and some Catholicism (altars, candles, and prayers). The ill person is usually laid on the ground over blanket-covered wooden slats.

The man in the photo below was thought to be dying of extreme stomach pain. His family placed the salvia (the green paste) on his head. It turned out he had a curable condition – ulcers – and the team was able to assist his healing.

Missionary German
Missionary German Becercil (in yellow) attending an elderly man whom he found with green salvia (Mazateca natural medicine) on his forehead

There is a general lack of knowledge among Mazatecas about many illnesses, especially cancer. There are no modern communications systems in rural areas. Few Mazatecas read or write. There are rarely funds to consult with a physician in Huautla, or to pay for medicine.  “The situation is hard for these appreciative and kind people. Without access they just get sicker,” comments missionary German.

The Juntos Contra el Dolor team is Catholic yet ecumenical. The team honors and works with traditions and belief systems of those they attend. Each mission has been able to address chronic pain and other needs, plus provide nutritional, emotional, and spiritual support. In addition to medical expertise and heartfelt prayers for patients and families, Dra Susana Lua Nava offers additional love and comfort by bathing the feet of those she cares for.

As many Mazatecas do not speak Spanish, local interpreters work with the mission.

A Young Girl with Cancer

This year, the team met an 18-year-old who had been diagnosed with stomach cancer in Puebla (the closest public (free) hospital).  Doctors did not tell her or her family she might die. Apparently no treatments were offered and no medicine was available. No education or instructions were given about what to expect or how to handle the pain.

It is possible there was no pain medicine available at the public hospital (often the case throughout Mexico). Perhaps the hospital did not have a palliative care team (likely), perhaps doctors were frustrated when there were no medicines to offer, or, perhaps the girl was discriminated against because she is indigenous and they wouldn’t give her medicine if they had it. There is no reliable account of what actually happened. Dra Susana Lua Nava and the team brought pain medicines and gave the family detailed instructions on how best to take care of their loved one.

Palliative Care Dr. Susan Lua Nava Reviewing Documents with Cancer Patient
Mexican Palliative Care Care Doctor Susan Lua Nava reviewing documents with precious cancer patient in the remote mountains of Oaxaca state

Despite the sad situations of illness encountered, missionary German concludes “in the 14 years I have been on humanitarian missions, I end up receiving much more than I have given.” Being with the noble Mazateca is always a gift. His sentiment was expressed by others who also felt humbled by the experience.

Mexican Palliative Care Law of 2009

The Mexican Palliative Care Law of 2009 states that anyone suffering from severe pain, especially with a terminal condition, has a right to relief from that pain. Unfortunately, the public is often unaware of this human right and where to find the help when needed.  http://www.calidad.salud.gob.mx/site/calidad/docs/dmp-paliar_00C.pdf

See also the Human Rights Watch report on palliative care in Mexico, “needless suffering at the end of life.”    https://www.hrw.org/news/2014/10/24/mexico-needless-suffering-end-life

Juntos Contra el Dolor, A.C.  (United Against Pain) is a non-profit palliative care hospital and hospice in Guadalajara, Mexico offering consultations, in-home care (65-70 patients), and in hospital palliative care and/or hospice service. The mission is supported by donations. Founder Dra Susana Lua Nava is the author of El Enfermo: Terreno Sagrado (The Ill: Sacred Terrain).  For more information write to juntoscontraeldolor@gmail.com  or call (52)(33)3617 2417 in Guadalajara. See http://www.juntoscontraeldolor.com  (currently under construction) and Facebook USA page at https://www.facebook.com/JuntosContraelDolorUSA/

Notes and references:

There are approximately 305,836 Mazatecas in Mexico. Each Mazateca community is usually less than 500 in number. The native language Mazateco is related to Nahuatl.

www.euromedinfo.edu/how-culture-influences-health-beliefs.html/   “Although Hispanics share a strong heritage that includes family and religion, each subgroup of the Hispanic population has distinct cultural beliefs and customs. Fatalistic views are shared by many Hispanic patients who view illness as God’s will or divine punishment brought about by previous or current sinful behavior. Hispanic patients may prefer to use home remedies and may consult a folk healer, known as a curandero (or shaman).”

http://www.mexico.sil.org/language_culture/popolocan/mazatec-maa
https://mapcarta.com/19948092 map of the Sierra Mazateca
https://en.wikipedia.org/wiki/Mazatec_people 
https://en.wikipedia.org/wiki/Huautla_de_Jim%C3%A9nez
https://www.youtube.com/watch?v=_xwIOrTKbxo  Huautla de Jimenez video December 2016
https://www.youtube.com/watch?v=1SXFrih04NA    dancing at the gravesite of someone in San Andres Hidalgo
https://www.vice.com/en_us/article/salvia-velada-mazatec-shaman-ceremony-portfolio-v23n8  unique video by American interested in shamanism and plants

https://www.youtube.com/watch?v=9C5ETSgHWBo  Mazateca shaman known as the Corn Reader

Researched and written by Wendy Jane Carrel

Photos by German Becercil and Jorge Gonzalez Gonzalez

Death and Dying, End-of-Life Care, Hospice, Humanitarian Rescue Older Adults, Mexico, Palliative Care, Palliative Care Mexico

Sacred, Dignified Death in a Mexican Palliative Care Hospital

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I have been sitting hospice as a volunteer since 1999.

I currently have the honor of assisting at the only 24/7 palliative care hospital and hospice in the state of Jalisco, Mexico, http://www.juntoscontraeldolor.com, (United Against Pain).

It is beyond words to describe what I see and feel as patients come and go – those who get well, those who pass in our presence, those who have family, those who are estranged from family, those who have no family.

Every day is a lesson in human behavior, details of physical illness and care, psychology of illness, and feelings that occur as we observe pain and/or quiet passing of others. Every day, despite the circumstances, there is a demonstration of love.

In early 2016 we received a call from El Refugio (The Refuge) missionaries, a non-profit that rescues people from the streets of Guadalajara. They had found a tall (by American standards), emaciated man who appeared to be dying.

The man had been taken to Hospital Civil Viejo (the Old Civil Hospital) where admittance was refused. The missionaries called in desperation. They remembered Juntos Contra el Dolor serves all regardless of economic position or faith. Everyone deserves a respectful end-of-life.

The  founder of the Juntos Contra el Dolor humanitarian model for Mexico, Dra Susana Lua Nava, urged the group to bring the man immediately. The man arrived dehydrated, malnourished, and appeared as though he would pass at any moment.

mural at entrance to Juntos Contra el Dolor
Mural at entrance to Juntos Contra el Dolor, palliative care hospital and hospice, Guadalajara, Mexico

We gently bathed him several times the first few days removing deep set black from his shoeless feet and body. We constantly changed the sheets and his gown. The odor was strong the first days and then dissipated. Around the fourth or fifth day the patient began to open his eyes. We started feeding him by mouth, little by little.

Each of us who entered his room – physicians, nurses, social workers and volunteers would have the same experience. We would talk to him, but he could only answer with sounds. At first we thought it was because he had lost almost all this teeth. We finally figured out he did not speak Spanish. He may have been a native Huichol from the mountains of Jalisco. We did not know.

But whenever we visited or fed him there would be light of appreciation in his eyes, and a slight smile on his strong, handsome face. When we stroked his forehead and hair or had our hands on his, he would bring our hands to his lips and kiss us. Tears would stream down his face. This is how he communicated. It made us wonder if he was ever attended to in his life. We too were moved. We felt deep compassion for him. We did our best to make him feel welcome and comfortable.

His name? He had no identification. One of the rescuers decided on “Rogelio”. We did not know his age. We guessed age 80. We did not learn the circumstances of his life of course. All we knew is that at this stage of his existence he was alone and abandoned. 

But we were there. One of the missionaries would come when he could to stay by Rogelio’s side all night, as family members usually do.

There were humming sounds of prayer in the room each day from those who stood by him.

In less than two weeks Rogelio passed in the early morning hours, veladoras (candles) burning. I was there alone with the night nurse. We bathed and diapered him. We wrapped his hands and head in gauze. We wrapped him in a new sheet with his face peeking out. I silently talked to him and wished him a good transition. I cannot speak for others who tended to him but his presence was an inexplicable gift.

Most of the patients who come to us (or whom we go to at home) are surrounded by innumerable family members. Rogelio was no longer without support. Hopefully, we gave him a dignified death.

Miraculously, El Refugio found a way to pay for his cremation. They found a place for his remains under a tree (we do not know where) and said prayers for him. He was cared for by everyone along his journey. See https://www.facebook.com/elrefugio.cuarto    Note: When unknown persons pass in Guadalajara their remains are placed in an unmarked communal grave in the city cemetery.

Rest in peace dear Rogelio.