Aging, Death and Dying, End-of-Life Care, Health & Wellness, Hospice, Palliative Care

Add Do Not Hospitalize to Your Advance Healthcare Directive or Five Wishes?

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 "End-of-Life Conveyor Belt": Dying patients are kept alive by machines, alone in a cold and sterile environment, their arms strapped down to the bed so that their catheters aren't dislodged. Photo: Getty Images, Jan Halaska / This content is subject to copyright.

Photo: Getty Images, Jan Halaska

“The ‘End-of-Life Conveyor Belt’ where dying patients are kept alive by machines, alone in a cold and sterile environment, their arms strapped down to the bed so that their catheters aren’t dislodged.”

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.

http://www.huffingtonpost.com.mx/entry/do-not-hospitalize-orders_us_59666c35e4b0a0c6f1e54ed9

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.

References:

https://www.agingwithdignity.org/   where you can order a Five Wishes form in English or several other languages

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

http://www.dartmouthatlas.org/data/topic/topic.aspx?cat=18

http://www.houstonchronicle.com/local/gray-matters/article/What-Ted-Cruz-doesn-t-get-about-dying-with-dignity-10985879.php?cmpid=fb-premium

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

http://www.npr.org/2017/08/09/542390784/a-physician-explores-a-better-path-to-the-end-of-life   NPR/Terri Gross interview with Jessica Zitter, MD, a palliative care specialist

https://www.iadvanceseniorcare.com/article/memory-care/advance-directive-struggle-alzheimers-resident?utm_campaign=Vertical%20-%20Memory%20Care&utm_source=hs_email&utm_medium=email&utm_content=55520297&_hsenc=p2ANqtz-_ZuLjuUATBQhAi_dTeVehajW7RuvMRO7pZriRKLrolsP_2zJWe7N3QKGPp2sAzxtLBK5GEqz075MHAwzmHqrY33xvXzQ&_hsmi=55520297    an article which speaks to the complexity of advance healthcare directives

 

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Death and Dying, End-of-Life Care, Health & Wellness, 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

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).

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).”

https://mapcarta.com/19948092 map of the Sierra Mazateca
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

Health & Wellness, Hospice, Pain, Palliative Care, Palliative Care Mexico

Palliative Care & Hospice in Jalisco, Mexico; Health Talk at Lake Chapala March 25

A church at Lake Chapala, Mexico has kindly asked me to speak at one of their health seminars.
I will share what I have learned after 1 1/2 years observing the only 24/7 palliative care and hospice model in Jalisco, Mexico, Juntos Contra el Dolor.  See http://www.juntoscontraeldolor.com
Details:
March 25, 2017   Saturday, 10:30 a.m.  St. Andrew’s Anglican Church
Calle San Lucas 19, Riberas el Pilar, Chapala
Palliative Care and Hospice in Jalisco, Mexico  presented by Wendy Jane Carrel, M.A.
Palliative care and hospice options in Jalisco will be reviewed. There will be a discussion of what might one expect compared to the U.S. or Canada.
The talk is open to the public.
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

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.

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 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.

Rest in peace dear Rogelio.

Caregivers, Death and Dying, End-of-Life Care, Health & Wellness, Hospice, Palliative Care

How Caregiving A Dying Husband Taught a Journalist Appreciation for Living

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

Tracy Grant, Deputy Managing Editor, Washington Post

http://www.pbs.org/newshour/tag/tracy-grant/

End-of-Life Care, Health & Wellness, Hospice, Pain, Palliative Care, Palliative Care Mexico

Mexico Palliative Care Non-Profit Holds Festive Fundraiser in Super-Competitive Environment

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.

dscn0330
Administration volunteer Michele Carrillo, Madre Martina Zumaya Head of Nursing, Dra Susana Lua Nava founder, Dra Karla Rebollar of Juntos Contra el Dolor A.C.

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.

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Four social workers, two MD’s (far right), all Juntos Contra el Dolor 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.
dscn0243
Sweet volunteers Lola, Maria, and Nena
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Volunteer Juan with his lovely, sensitive mother – his father, her husband, passed away at Juntos Contra el Dolor in June 2016
beautiful Mexican ladies of the San Bernardo parish
beautiful Mexican ladies of the San Bernardo parish
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junior guests
dscn0319
All-girl mariachi band from Guadalajara

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).

End-of-Life Care, Health & Wellness, Hospice, Mexico, Palliative Care, Palliative Care Mexico

Palliative Care/Hospice Juntos Contra el Dolor of Mexico Holds Kermes (Fundraiser)

Juntos Contra el Dolor - we are helping diminish pain
Juntos Contra el Dolor – “we are helping diminish pain”

 

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.

setting tables for the kermes
setting tables for the kermes
founder Dra Susana Lua Nava with volunteer nurse Rocio
Founder Dra Susana Lua Nava with volunteer nurse Rocio

 

 

 

 

 

 

 

volunteer nurse Rocio and volunteer coordinator Nena
volunteer nurse Rocio and volunteer coordinator Nena
social workers Silvia and Lupita
volunteer social workers Silvia and Lupita

 

sister volunteers, administrator Sara on the right
sister volunteers – Marta and administrator Sara on the right