In early November, New York Times best-selling author (Knocking on Heaven’s Door) Katy Butler gave a talk focused on themes from her new 2019 book The Art of Dying Well at Sutter Health CPMC in San Francisco. Approximately 100 healthcare workers participated.
I was fortunate enough to attend and briefly meet Katy and her husband Brian, also active in humanitarian and senior care issues.
The event gave Butler a chance to share compelling, medically complicated personal stories relating to the passing of her parents and friends. She also spoke about her commitment to compassionate care and the human right to die with dignity and grace when possible.
I found what she had to say authentic, heartfelt, and practical… especially her reminders that a good many of us working in senior care and palliative care find imperative to share with others – make a plan for end-of-life if you haven’t already, find your tribe (who will be there for you, presuming your demise is not sudden), stay in charge (ask for what you want and need), and “bring in the sacred.”
Katy hosts a Facebook group entitled Slow Medicine, based on principles in the book of the same name by her Bay Area colleague and friend Dr. Victoria Sweet, calling for change in medical practices. Quality of life over invasive and perhaps unnecessary procedures, especially at end-of-life.
Notable aside: Butler, a Buddhist, was lay-ordained by Thich Nhat Hanh, Vietnamese monk and peace activist. She lived seven months at his Plum Village retreat in France, among other significant life experiences.
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:
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
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 renowned specialist 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).
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.
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.
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.
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.
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 email@example.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).”
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 try and 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 the 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 might 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 a lot of 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. And 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