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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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.

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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.
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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
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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

 

End-of-Life Care, Health & Wellness, Hospice, Long-Term Care, Palliative Care

Iconic British Rock Star David Bowie Creates a Good Death, a Hero’s Death

Iconic British rock star (singer, writer/poet, actor, dancer, and musician) David Bowie passed away at the tender age of 69 this week, two days after his birthday and the release of a new album.

Who knew he had cancer for 18 months? 

Below is an excerpt from an article I wish I had written based on subjects I like to speak of often – advance planning, creating a way for your end-of-life wishes to be honored, living your last days (if you have terminal illness) in a way you so choose.

Bowie seemed to have experienced a “good death” with the support of family, colleagues, physicians, and undoubtedly a splendid palliative care team. In the next months I trust we will learn more about the kind of care he had. What I like most is that he seemed to have been honored by those around him, that he manifested a way to live to see his birthday and the release of his album.  Rest in peace dear soul.

Here below is the excerpt from http://www.chtonicboom.com by Diana S-V. It is worth going to the web site to read the rest of the report…

How to Die Like Bowie, or, We Can Be Heroes

Posted in Music on January 12, 2016 by Diana S-V

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A picture from David Bowie’s final photoshoot, shot by Jimmy King.

By now, everyone has heard the news of David Bowie’s death of cancer at sixty-nine years of age. Bowie’s death came two days after his birthday and the simultaneous release of his newest album, Blackstar, and so many fans and Bowie aficionados likely received this news after a few days of appreciating the new album, revisiting old favourites, and generally appreciating the oeuvre of a man whose work, words, and aesthetic profoundly changed them in some way.

When I first read the news of his death, the first thing I felt was shock. The second thing that I felt was appreciation that what I was feeling was shock. Let me explain: Bowie is one of the most famous and widely known musical artists to have ever lived, and if he was living with cancer for eighteen months without it being public knowledge, it was very deliberate. This means that he, his family, and his colleagues had to make several complicated arrangements to ensure their privacy, and it also means that the folks who were a part of Bowie’s inner circle had to respect that desire for privacy. In other words, a number of factors had to be in place—human, bureaucratic, legal, and more—in order for Bowie to confront his death in the way that we wanted.\
The more I learn about things like his final photoshoot, the deliberate timing of the release of the video for “Lazarus,” and the tone of ★ (Blackstar) the more I appreciate what a good death looked like for David Bowie, especially given how much labour, organizing, and effort had to be expended in order to make this good death happened. In the weeks to follow, we will likely learn even more about Bowie’s final months and his approach to dying of a terminal illness, but in the meantime, what can we learn about how to die from Bowie? What can we learn about how to make a good death happen for ourselves? Here’s another way to think about it: how can we emulate, in a meaningful way, the worldview and courage of a man that was so widely admired and loved? I’ll be going into more detail in subsequent blog posts about my encounters with the following topics, but it seems to be that David Bowie’s good death consisted of several basic components or actions that we can all practice ourselves. (web site cited above has rest of Diane’s worthy story).

Here is a link to the Lazarus video referred to above…

http://www.ebaumsworld.com/video/watch/84892627/

End-of-Life Care, Hospice, Mexico, Palliative Care

World Palliative Care and Hospice Day – A Note from Guadalajara, Mexico

Juntos Contral El Dolor team
Juntos Contral El Dolor team

I have the honor of serving as an observer at Juntos Contra El Dolor (United Against Pain), a palliative care hospital and hospice in Guadalajara, Mexico.

Its founder, Dr. Susana Lua Nava, is a graduate of the medical school at UAG (Universidad Autonoma de Guadalajara).  She did further training in the Canary Islands with Dr. Marcos Gomez Sancho, considered a highly-regarded thought leader in palliative care.

Dr. Lua, also a nun, is dedicated to creating an integrative model for Mexico which addresses the needs of not only the patient, but of the family as well.

Her non-profit produces educational seminars on palliative care for both professionals and the public.  On October 29, 30, and 31 Juntos Contra El Dolor is sponsoring a 20-hour continuing education international conference at Expo Guadalajara entitled “Crisis en Salud: Amenaza o Crecimiento?” (Health Crisis: A Threat? Or an Opportunity for Growth?).

Pain management pioneer Dr. Marcos Gomez Sancho of Spain will focus on the “Culture of Death in the Latin World”, and “Dying in Peace.” Other themes include morphine vs. marijuana, the psychological struggle in patients with terminal diseases, how the family handles a crisis and makes decisions, interventions when pain is difficult to control, nutrition, and more.

Juntos Contra El Dolor is located in the parish of San Bernardo (Mezquitan Country), known for its dedication to social justice. There is a day center for Down’s Syndrome children, a drug and alcohol live-in re-hab, a senior home, and the hospital.

Juntos Contra El Dolor serves all regardless of socio-economic standing, religious preference, age, or race.  See http://www.JuntosContraElDolor.com.

Above is a photo of the Juntos team.  Dr. Lua is in the center.

 

Ecuador, End-of-Life Care, Hospice, Palliative Care

Hospice Nuns Offer Love and Palliative Care in Cuenca, Ecuador

Cuenca High Life just posted an article I wrote about the precious hospice nuns of Cuenca, Ecuador.  They offer the energy of love and light, plus comfort and serenity to those who are gravely ill and making their transitions.

Here below is a link to the article…

http://cuencahighlife.com/one-of-cuencas-best-kept-secrets-the-siervas-de-maria-servants-of-mary-hospice-nuns-provide-the-support-of-a-loving-family/

I shall miss these remarkable ladies (eight total) but am looking forward to meeting up with others of their order in Guadalajara and suburban Los Angeles.

Precious Servants of Mary - Sister Marina, Sister Magdalena, Madre Teresa
Precious Servants of Mary – Sister Marina, Sister Magdalena, Madre Teresa