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.
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 Lifecandlelight vigil held at the San LuisObispo 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.
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
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.
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.
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.
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.
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:
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.
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).
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.
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.
Can you have control over your end-of-life care? Is it possible to avoid aggressive medical treatment if you do not want it?
According to a Dartmouth Atlas study, 80% of terminally ill patients in the U.S. say they don’t want intensive treatments.
My interpretation: Patients, whether terminally ill or not, are asking for comfort, quality of life for their last days, and relief from pain (palliative care).
The photo and statement above are from an article by Jessica Zitter, MD, for the Houston Chronicle. She says, “my patients need to understand their options and make their own decisions.”
In order to make one’s own decisions in the U.S., such as avoiding hospitalization and invasive treatment, one must create an Advance Healthcare Directive or Five Wishes (an alternative advance directive recognized in 42 states and the District of Columbia). You must declare your specific medical wishes BEFORE such events might occur.
Your wishes must be notarized. Then they are legal. Be aware they may not always be honored by ambulance services or doctors in hospitals. Ideally, you will have an advocate who is your healthcare proxy or surrogate for healthcare decisions – usually a loved one with a copy of your wishes in hand.
It is also wise to prepare a POLST Physician’s Order for Life Sustaining Treatment (California) or MOLST Medical Order for Life Sustaining Treatment(New York). This way your wishes will be registered on an electronic record should you land in a hospital.
What is usually included in a healthcare directive?
It is common to include a DNR (Do Not Resuscitate), DNI (Do Not Intubate), or DND (Do Not Donate) organs or your body. These are personal choices – saving and prolonging life at all costs or not, tubes or not, donating or not. It is also common to designate a healthcare proxy or surrogate for healthcare decisions as mentioned above, someone you trust to make decisions in the event you cannot.
A recent article on Huffington Post reported on a request some folks are now including, a DNH (Do Not Hospitalize). See link below for entire article.
I am currently in Mexico exploring senior care, palliative care, and end-of-life issues. The Do Not Hospitalize order got me thinking, even though I am in good health. So last week I updated my Mexican healthcare wishes because American and Canadian Advance Healthcare Directives are not recognized or honored if something happens in Mexico (or most of Latin America where Napoleonic code prevails, and not common law). I have a similar document for Ecuador. When anywhere outside the U.S. I carry a copy of my Five Wishes anyway.
Note: I am grateful to hospitals, one saved my life as I was not expected to survive my birth. In certain cases, such as extreme bleeding or falls, there may be no other option than a hospital. It would be wise to specify exceptions for hospitalization in your document if you decide to mention the preference. In my experience, most people in frail health want to be kept comfortable with palliative care at home, especially for their last days. In this circumstance, caregivers must know not to take you to a hospital.
Additional note: If you are traveling in Latin America, do not have health insurance with worldwide coverage, and are able to state your wishes cogently, and need hospital care, go to a public hospital. If you are accepted at a private hospital you will not be able to walk out the door unless every peso is paid.
An estimated 62% of Americans do not have an Advance Healthcare Directive.
I urge you to create your healthcare wishes if you haven’t already. I advise carrying a copy when traveling by air, train, or sea. Keep a copy handy in the glove compartment of your car … in case of emergency and for peace of mind.
http://capolst.org/ California Physician’s Order for Life Sustaining Treatment. You can download the pink form, fill it out, submit to your physician, who will in turn enter it into a statewide electronic system
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.
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.
PBS News Hour features a short talk by Tracy Grant, Washington Post editor, about how caring for her terminally ill husband offered an understanding of quality of life and made her own life worth living. (See link at end of blog for video).
As a caregiver, palliative care worker and hospice volunteer, I agree with what Grant communicates. We all become our better selves while caring for others. The ill teach us so much. Their gifts to us last a lifetime. The experiences can be remarkable.
Tracy Grant, Deputy Managing Editor, Washington Post
Mexican non-profits have a hard time surviving. One can say many non-profits, no matter the country, find it challenging to be sustainable.
In the state of Jalisco, there are over 800 registered A.C.’s, Asociaciónes Civiles, or non-profits. In all of Mexico, there are about 4,000 registered non-profits. That’s a lot of competition in a land where philanthropy, though existent, is not part of the culture.
Juntos Contra el Dolor of Guadalajara is a remarkable entity. It is a Mexican model for palliative care and hospice. Its resourceful, enthusiastic founder and palliative care educator Dra Susana Lua Nava is an ecumenical nun. Her team serves anyone of any belief system or economic background. All are dedicated to offering holistic pain relief for life-limiting conditions or at end-of-life.
In 2014 Dra Susana Lua Nava and Juntos Contra el Dolor received the prestigious state of Jalisco IJAS award for outstanding contributions by a non-profit.
Juntos Contra el Dolor’s 24/7 humanitarian effort includes not only medical attention at its 8-bed hospital but outreach and education to 65 or more patients and their families at home. For a Mexican non-profit dependent on donations, this is an achievement. Faith in the need, faith in all possibilities, and a lot of love are components of the Juntos ability to continue despite obstacles.
Every member of the team is a volunteer except the nurses. The team consists of palliative care doctors, psychologists, social workers, chaplains, and trained volunteers.
Juntos Contra el Dolor held its annual fundraiser, a Fiesta Mexicana gala, on Saturday, September 24.
The nuns and volunteers led by Dra Susana Lua Nava proved to be creative and super organized.
Every detail was attended to – philodendron plants, potted geraniums, Viva Mexico banners, red/green/white flags hanging from the ceilings, red/green/white bow ties over white blouses or shirts so people would know who the volunteers were, donated chocolate cake from one of the best bakeries in town, clean white table cloths and chair covers, a tequila bar, a hand-made hot organic corn tortilla corner, and a place for photos where guests could dress like a revolutionary from the Mexican independence. Fresh quality food included 10 guisados (entrees) prepared with love and served in Mexican pottery, a rarity at charity events in Jalisco. And, there was a romantic singing group Los Bohemios, plus an all-girl mariachi band dressed in hot pink and silver!! A lively event and fun for all.
Juntos Contra el Dolor provides weekly consultations in a donated space in San Augustin, a suburb to the west of Guadalajara. By January 2017 there will be consultations for those suffering from pain at Lake Chapala, an hour from Guadalajara. The offices will be in the Church of San Juan Batista in San Juan Cosala.
As mentioned, the non-profit stays afloat by donations – usually in-kind support such as diapers, linen, paper supplies, fresh organic food, and new medicines.At the following link you can read what is needed and where one can make donations. http://juntoscontraeldolor.com/Donaciones/don.html
Dr. Lua received three years of specialized palliative care training in the Canary Islands with Dr. Marcos Gomez Sancho, considered the leading palliative care physician and professor of the Latin world. Dr. Lua is a thought leader for Mexico, and author of El Enfermo: Terreno Sagrado (The Ill: Sacred Terrain).
Juntos Contra el Dolor, A.C., the only 24-7 palliative care/hospice in Jalisco, Mexico, held a kermes to raise funds for its humanitarian medical effort which aides patients with chronic pain, and, at end of life. The Juntos team also provides psychological and spiritual support to families of patients.
The kermes was held on a Sunday from 8 a.m.to 2 p.m. outside the Templo of San Bernardo on Plan San Luis in northwestern Guadalajara, a church with 3,000 parishioners.
A Mexican kermes is an outdoor party for a special cause. To support the cause, people buy food and drink. The Juntos kermes served tacos with birria, quesadillas, homemade jamaica (a hibiscus drink) and horchata (a rice drink). Juntos brochures were on each table.
The nurses, who are the only paid staff (except for volunteer retired nurse Rocio), were taking care of patients at the hospital around the block..
The Spanish word kermes is derived from the Turkish word kermes which originally meant a handicraft bazaar to raise money for charity. It is also derived from the Dutch word kermesse, (kerk = church, mis = mass), a festival after mass.
Dra Susana Lua Nava, a palliative care physician based in Guadalajara, Mexico, spoke to over 200 North Americans and locals at Open Circle on the Lake Chapala Society grounds in Ajijic, Mexico about pain relief for chronic conditions and end-of-life.
Her passionate presentation about the unmet needs in Jalisco state and throughout the country triggered many questions from the audience, plus more interest in bringing such services to the lake. Lake Chapala is about an hour’s drive from Mexico’s second largest city Guadalajara. An estimated 20,000 North Americans reside there during high season.
It is a goal of Dra Lua’s non-profit Juntos Contra el Dolor, A.C., (United Against Pain), http://www.juntoscontraeldolor.com, to educate communities throughout Mexico about what palliative care is, and show how to offer comfort care to those with life-limiting diseases. Ideally, there would be models for this care in each state. Currently, palliative care is primarily found in three large cities at regional hospitals – Guadalajara, Mexico City, and Monterrey.
In 2009 the Ministry of Public Health of Mexico established guidelines for palliative care entitling all residents of the nation to relief from pain. The challenge has been that most people do not know exactly what palliative care is, nor where to find it. Palliative medicine is often confused with pain clinics which may offer medications but do not necessarily include a holistic support team for the patient and family members during such trying times.
As of yet, there is no dedicated palliative care/hospice team – physicians, nurses, psychologists, social workers, clergy, and volunteers working together at Lake Chapala. There have been previous efforts to establish a hospice. (The main cities at the lake are Ajijic, Chapala, San Juan Cosala, and Jocotopec. It takes around 40 minutes to drive from Chapala on the east end to Jocotopec on the western end).
There are a number of highly talented retired palliative care and hospice administrators, physicians, nurses, clergy, social workers, and others from Canada, the U.S., South Africa, and other countries at the lake. Several groups have formed to discuss how to establish a service that can serve all populations and will endure.