How Weird, hospice (the purpose), ports of call (Asia)

How Weird, 2016

How Weird is a street party in San Francisco – about 20,000 people, fragrant air, 10 stages, trance around every corner – BIG THUMP THUMP THUMP! 2016 was a good one! How Weird site

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I found this from days gone past (in the 1995 book): “The underlying purpose or mission of hospice/ palliative/terminal care is to facilitate an internal and external physical, psychosocial, and spiritual environment in which the patient and his or her loved ones have the opportunity for reconciliation with God, others, and self… to realize the purpose of life.” 

We took on pain, suffering, despair, emptiness… with knowledge, skill, commitment, presence…

In the Still of the Night, Hong Kong 5am

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Traveling in Asia… All those places…

(Links are to some - not all - posts from Asia travels)

Hong Kong – Home base, where we always spent at least a few days going to and coming from SE Asia. My first time there was in 1967; Leslie and I started going in 1978; our last time was in 2013. I love Hong Kong. “Urban compression!” 2012, 2005, 2008

(Ridicerous!), some photos, and 2013 (our last HK post)

Leslie's favorite banh cuon lady in Hanoi

Hanoi – Walking in the “medieval streets” of the Old Quarter, Leslie said, “I love Vietnam. It’s fun. It’s clean. The people are nice and seem to be honest. And the food is unbelievable.” Nobody in the history of the world ever said all that together about Vietnam. Vietnam! Leslie! 2010, with David and 2008 (first time)

Sapa – A town in the clouds, literally; in the cool northern Vietnam highlands; kind of like Nepal. Sapa, 2013 

A lake in the middle of an island in Halong Bay

Tam Coc – In a two-person boat on the river running through rice fields, along limestone cliffs, through caves… Hanoi and Tam Coc

Halong – Incredible islands of vertical limestone rising mysteriously from the mist and a placid sea on a boat with about 20 passengers. One of them said, “I have, what do you call it – the sickness of the ocean. I want to womit.” Halong - a ship of (some) fools 

Hue – Beautiful Hue, my favorite city in the world (along with San Francisco and Berkeley). My first time here was in 1967. It’s raining, misty, tropical, mysterious, this city of ghosts. Hue (it's raining) and Beautiful Hue

David and Leslie in the rain near Hue.
I love this photograph.

Hoi An – Narrow streets, few cars, old shop fronts, tailors, and tourists. Hoi An and Hill 55 (2005)

Danang – I spent 3-4 days/month there for six months in 1967. Leslie and I just passed through a few times. A place with a lot of memories, many of them good.

Near Battambang

Saigon – Oh hell, yes! Packed streets and markets (it’s a commercial rave scene), millions of motos, brilliant street food, countless narrow lanes, a place of many good memories since my first time there in 2005, 2012, 2006

Mekong Delta – The greenest place I’ve ever been, water, water everywhere, a beautiful place. 2006

Phnom Penh – The first time there it seemed ominous, but over time, opened up. David was there for a year working at the Hope Medical Center. Mony, Sophear, their family, Samnang – welcome! 2006 (includes Phnom Penh and Hope Hospital),  2005 (I never imagined visiting mass graves or torture rooms)

In Chiang Mai

Battambang – The heartland of Cambodia, slow-moving, deep into the countryside 5 minutes out of town. 2010, 2005

Siem Reap (Angkor) – Ancient temples, deserted for centuries, and we’re slow-walking into the empty forest around Angkor. 2005, 2006

Kampot – Sleepy riverside town where the river empties into the Gulf of Siam. Phnom Penh and Kampot

Poipet – (Cambodian border town) It used to be the dirtiest imaginable town with dusty, ghostly, ragged people trudging around; now, it’s full of casinos and brothels.

Curry - two with rice for a dollar or two

Aranyaprathet – Several times, actually. Once we were staying in a house way out in the countryside a mile or so from where artillery was hitting. We talked about where we would meet if the arty hit us and we were separated and Leslie was like, “Okay.” A very cool person. Khao-I-Dang – the refugee camp near Aran. Photos, words about K-I-D

Leslie in Burma, 2007 and Kathmandu, 1978

Bangkok – Southeast Asia’s main travel hub. To put it into context, the population is almost 3x bigger than Houston, but with waaay less urban planning. Leslie loved Bangkok and we had many good times there – The Miami, where as a gesture of solidarity with the prostitutes who weren’t allowed to use the elevator, Leslie always took the stairs. The Century Motel, Nansok’s, Boon’s, Drop Inn, Suk 11, Merry V Guesthouse, Stephan’s, Jean-Francoise’s, Harry’s... 2008, 2009 (rediscovering Bangkok) (also see You call it liver... below)

Kho Samui – In those days, just an overloaded ferry-ish boat. Little grass hut on the beach for about $1.50. Photo below.

Ayyutahya – Ancient ruins north of Bangkok.

Worship at Shwe Dagon in Rangoon

Chiang Mai – City of many temples, markets, festivals, good food, cheaper guesthouses and hotels, cooler temperatures, and happy memories. Our first time in Chiang Mai was 1978 and our last time was December 2013. "You call it liver; I call it karma" (2013), 2011, 2007 with David

From left: Paul, Charles, Leslie, Vera - in Mandalay

Luang Prabang – A UNESCO World Heritage city, which means that old buildings are preserved vs. new one built, small signs, many travelers (more travelers than tourists). Great times for Leslie, David, me – and a great connection to Ben and Magera. 2007 with David

Rangoon – We were here in the old days, when visas were for 7 days only, and in modern times when the city is (now) called Yangon and visas are for longer stays. There was one magical night in a government guesthouse. And magical days at Shewdagon – the great golden temple/paya. Photos from 1970s, Shwe Dagon 

A transgender trance dancer (pink top) in a nat
ceremony down a side street in Mandalay, 1980s

Moulmein! – “By the old Moulmein Pagoda, lookin’ lazy at the sea, there’s a Burma girl a-setting, and I know she thinks o’ me...” And I sat right where Kipling's Burma girl sat, and I looked out to the sea and thought of her… Following written on the train from Moulmein to Rangoon:

Mountains above,
Padi below,
In mystic light.

Through a village in a forest,
A beautiful, graceful girl,
With thanaka on her cheeks,
And a basket on her head,
Walks out of a dark path among the trees.
Then another one!

Down in a small valley between green, green hills women bathing by a stream, sarongs up over their breasts. Children playing. How I wish, how I wish you were here. 
Mountains close by the road, clouds touching to tops and sunlight touching the sides with golden stupas glittering in the sunlight - like a hallucination. Smell of growth and wood smoke. Child with short hair and thanaka on her cheeks and nose. Some houses, but mostly hooches, some nice, some poor. It's not too hot, but it is hot.

Somewhere along the way I lose almost all my commitments, except for Leslie and David and the mission. Moulmein and other places in Burma, 2007

At Shwe Dagon

Pegu – Home of the world’s most beautiful reclining Buddha and not much else – just an incredible small Burmese town. See photos and 2007 links above

Mandalay – More magic in this sprawling dusty village-like city. Leslie and Charles: they’d have fun anywhere! More photos from 1970s

Sagaing – a mystic town of temples and monasteries across the hills, in the mist. See photos and 2007 links above

Maymyo – A former British hill station, where there are miniature stagecoaches instead of taxis. See photos and 2007 links above

Outside of Kathmandu

Calcutta – Every block of every street had many, many people sleeping on the sidewalks, even in the street. There was a corpse right outside the gate to our hotel. Leslie’s dysentery got worse here.

Kathmandu – A hippie paradise framed by the Himalayas. On the plane out of Kathmandu, flying over the snowy mountains, Leslie said, “If this plane goes down (and that seemed like a possibility), what a place to die!"

Ko Samui - Leslie and our little hut

Food in Asia post

Food in Asia photos

All the Travelpod entries

Google Pages travel site/links

Picassa Web photos

I wrote this for YOU - I think you'll benefit from reading it

Introduction

I’m writing this because I still hear people talking about a family member suffering terribly at the end of life. In most cases, terrible physical suffering through the process of dying is an indication that quality of care is lacking. My focus is on cancer, but concepts apply to other conditions.

With current standards of care about 90% of patients with cancer pain can have their pain managed (i.e., acceptably pain-free and alert) with conventional means such as oral morphine and adjuvant medications (1). Most of the other 10% can be managed with alternative measures, such as surgery, nerve blocks, and so on. This has been the case since the 1980s (2). In any care situation there may be periods when there are problems – such as in the last few days of life – but these can nearly always be anticipated and successfully treated.

Ways that people do (the kinds of things that begin to happen when pain and other problems are under control): There was a water sprinkler set to hit the window of the patient’s room. Her son-in-law explained that she loved the rain.

Pain and suffering are not necessarily the same. Without going into a lot of detail, physical pain usually results from physical insult and can be enormously influenced by psychological, social, and/or spiritual issues. Suffering can be physical, but may also be psychological, social, and/or spiritual in nature. Most often, suffering is multidimensional. Quality care at the end-of-life addresses all these spheres of being.

I’m not saying it is easy to manage pain, depression, and other problems common at the end of life. I’m saying it can be done and should be done so that deep communication and true healing can occur.

My credentials for writing this are at the end of the post.

Living well within the process of dying

First, understand that you have to be in charge of your illness or your loved one’s illness. Knowledge is power. In addition to Google leading you to legitimate sites such as the American Cancer Society, NIH, Johns Hopkins, etc., you should search Pubmed. Pubmed is the NIH site that lists research articles (enable the abstract feature) on everything imaginable. Pubmed searches are often not quickly rewarding, but persistence is rewarded with breath-taking depth (this stuff really does turn me on). Search tumor type (prostate cancer, etc.), treatment, symptoms, and so on. One caution: not all journals are of equal veracity, so stay with known publications like Cancer, Journal of Pain and Symptom Management, Cochran Review, JAMA, etc. Here is a relevant abstract from Pubmed: http://www.ncbi.nlm.nih.gov/pubmed/23881654

Ways that people do: A few days after he died, a dozen red roses were delivered to her. With them was a note from him, thanking her for their life together.

But can’t you just trust your doctor to do the best thing for you? Hopefully your doctor and the institutions s/he is associated with will do what is best for you, but there can be differing agendas among patients, families, doctors, institutions, payors, etc. Vast sums of money are involved, providers/institutions are always in a CYA (cover your ass) mode, communications vary in accuracy, and so on. If you think about it, without a lot of work, it is highly unlikely that everyone will be on the same page.

Communication

Assertive communications supported by knowledge are essential to receiving the treatment you want in terms of quality of life and managing symptoms. Do you want to be treated with chemo, radiation, and surgery right into critical care to die alone and in pain? The longer aggressive treatment continues, the greater the pain and other symptoms are at the end of life (3). That sorry story has been acted out millions of times. Knowing when to shift the focus from cure to care is a complex and challenging issue.

Is dignity important to you? At what point do you want curative treatment discontinued? How much do you want to know about the diagnosis and prognosis? Do you want to die at home or in hospital? And much more. To do well, you have to know about your disease and treatment – and also insurance benefits, community resources, and more.

Some questions (more specific than is there any hope): What is purpose of the proposed treatment? The usual outcome of (1) chemotherapy at this stage and (2) surgery at this stage. Best outcome? Worst outcome? What will treatment be like in terms of quality of life during and after treatment?

Communication is obviously central to dealing with psycho-social-spiritual issues. Communication with loved ones can be painful – which often is an indication that the communication is important.

Ways that people do: One of my students told me that when she was young her sister had advanced leukemia. They slept in twin beds in the same room. One night, when the lights were out her sister said, “I’m afraid.” My student answered, “Me too” and got into bed with her sister. They slept together that night and all the rest of the nights her sister lived. Despite the fact that everything changed for the better, my student still wondered if she said the right thing.

Why would she wonder if she said the right thing? Because in her (white middle-class) culture, people are supposed to be brave (or pretend like it). They are supposed to be positive. They are supposed to have faith. What a load. How about being brave enough to be honest. How about respecting the person who is dying enough to treat that person as an adult deserving of open, honest and loving communications. How about having about as much faith and positivity as Jesus Christ. “My soul is sorrowful even unto death (don’t leave me).”

When everyone is brave and positive in a false front, the result is often emotional isolation for everyone concerned. What a tragic waste of energy and precious time.

Ways that people do: It was about two weeks before Jan died. Her mother was painting Jan’s toenails. “I guess you’re wondering why we’re doing this at a time like this.” “No, not really.”

When should hospice be involved?

Hospice services should be started early in the process of terminal disease, before symptoms are severe or psychosocial or spiritual problems develop.

It is a fundamental and grievous mistake to wait until things are bad to get into hospice care. Hospice is not an admission that nothing else can be done. Hospice (a good one anyway) is an affirmation of the fullness of life – physical, psychological, social, and spiritual. All these aspects of being are addressed in hospice care. As a result, quality of life is improved in most cases, especially when hospice is involved earlier than later.

Are people who are dying usually distressed to have hospice care introduced? No; they are often relieved.   

Managing pain

Here are some of the keys to successfully managing pain. These are applicable to other symptoms of advanced disease as well.

Oral medications are the first choice except when the pain is first being brought under control - when intravenous or intramuscular medications are used. Controlled release morphine is the first drug of choice for patients with chronic cancer pain. Intermittent patient controlled analgesia (PCA) via pump is fine for pain after surgery, but is inappropriate for severe and chronic cancer pain.

Issues of addiction and tolerance are addressed at the link below. Suffice it to say here, in terminal illness, addiction is not a problem (for several reasons) and tolerance is easily treated.

Medications should be taken on a schedule so that a relatively constant effect is maintained and pain does not recur. It is better to wake the patient for medicine on schedule than to let him or her sleep and then wake in pain. In other words, do not wait until pain is felt (much less, is severe) to take medications.

Primary side effects of morphine and other opioid (narcotic) medications include nausea and constipation. Nausea resulting from morphine or other opioid is what is known as an initiating side effect, i.e., it occurs when therapy is begun and usually ceases or at least decreases after a few days. When a person experiences nausea from morphine or other opioid medication, the antiemetic is then given on schedule so that nausea is prevented. Often the antiemetic can be discontinued in days or weeks.  Constipation is ongoing and treatable.

Other principles are discussed at the link below.

You can see the basic idea is (once under control) to prevent pain, nausea, etc. Basically in a pain situation it is nothing other than gratuitous cruelty to demand that a person suffer before receiving relief.

Ways that people do: The hospital bed was in the living room so that he could look out into the neighborhood where they had lived all these years. He could see a rose bush he’d planted long ago.

Did you ever have a painful procedure or treatment done and were given pain medication after the treatment? That’s not quality care; it’s poor care that demonstrates a lack of concern about you. It is not rocket science. MEDICINE SHOULD BE GIVEN/TAKEN BEFORE THE PAIN EVENT AND/OR BEFORE PAIN RECURS.

“The link below” No longer operational

This links to a website I created – Terminal Illness: A Practical Guide for Patients, Families, and Providers (hosted by Baylor University). There are straightforward discussions of what to do about pain, difficulty breathing, depression, anger, etc., etc.; how to tell when someone is dying; organizing family and friends; and many other problems and issues of dying. There is also a good low-cost coffin resource on the site. 

I invite you to use this website, as well as Pubmed and other suggested resources to do the work that will ease your loved one’s passing as well as your own passing. Link does not work 

https://bearspace.baylor.edu/Charles_Kemp/www/terminal_illness/Terminal_Illness.htm

Ways that people do: “Finally, we’re being honest with one another.”

References

(1) Oral morphine for cancer pain. http://www.ncbi.nlm.nih.gov/pubmed/23881654

(2)  Coyle, N., Adelhardt, J., Foley, K.M., & Portenoy, R.K. (1990). Character of terminal illness in the advanced cancer patient: pain and other symptoms during the last four weeks of life. Journal of Pain and Symptom Management. 5,2.

(3) Predictors of Symptoms and Site of Death in Pediatric Palliative Patients with Cancer at End of Life.

http://www.ncbi.nlm.nih.gov/pubmed/23901145

Credentials

My credentials for writing this: I have provided care (as an RN, later as a nurse practitioner, and also as a volunteer) for many people at the end of life. I founded the first hospice in Texas, which, when I left was serving more patients than any other hospice in the US. I have taught palliative and hospice care in undergraduate and graduate schools and have written a book and about 30 articles and chapters in professional journals/books on end-of-life care.

Hospice visions, the way our house smells, an extraordinary woman

In the early days of hospice we knew we were in uncharted waters.

We were doing something new, something beautiful.

It was visionary.

We were in the valley of the shadow of death.

Every day, all day.

It was all a vision - something like hospice as we did it doesn't emerge from ordinary consciousness.

One of our patients. Photo by Debora Hunter (featured at the Smithsonian
Museum of Fine Arts, Hirschorn Museum). Spend some time with this
photo. Make it big. You'll be glad you did 

There are songs and there are songs and this song (below) is deep in the foundation and structure of my life and love. First, it is a tribute to Leslie and how she was with me in the darkest hours. It also tells exactly why we were there in hospice, choosing to go into the valley.

In the attics of my life, full of cloudy dreams unreal.

Full of tastes no tongue can know, and lights no eyes can see.
When there was no ear to hear, you sang to me.

I have spent my life seeking all that’s still unsung.
Bent my ear to hear the tune, and closed my eyes to see.
When there was no strings to play, you played to me.

In the book of loves own dream, where all the print is blood.
Where all the pages are my days, and all the lights grow old.
When I had no wings to fly, you flew to me, you flew to me.

In the secret space of dreams, where I dreaming lay amazed.
When the secrets all are told, and the petals all unfold.
When there was no dream of mine, you dreamed of me.

(Attics of My Life, Grateful Dead)

We set out consciously to be and sometimes we were the singer, the player, the flier, the dreamer… healing.

We believed, we were committed to the idea that people should not be alone in their time of dying. We always started with the pain, dyspnea, nausea, etc. Then the psychological-emotional-social-spiritual work and the unfolding could begin. Sometimes the purpose of life realized in those last days: Reconciliation with self, with others, with God.

A dream manifested in hard, hard work in the face of suffering and death in the deep heart of the night.

http://www.texasmonthly.com/story/passing Dick Reavis captured the spirit of hospice in this article (though he misrepresented me). 

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Country sourdough cheese bread. Whoa!

Today the front rooms of our home smell of the lavender from the big plant that hangs into the street in front of our home. Yesterday I accidently broke a 2 foot branch of rosemary from one the plants by our sidewalk, so that branch is perfuming the back of the house.

This home often smells of bread baking (even the rising of the sourdough has a wonderful fragrance). It smells of pies or cookies in the oven, of coffee being ground, of pecans or walnuts roasting, of almonds being ground. The kitchen smells of chillis, onion, garlic, cilantro, citrus, basil, lemon grass, mint, curries.

The prayer wheel in the front room turns with the breeze from the fan…

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Leslie (see my Facebook homepage for more recent photo)

I was lying beside Leslie, thinking that I know many nice people, many good people, many competent people, many beautiful people, but I know very few people who have been as merciful with so many people for as long a time with as much competence and complete selflessness as Leslie. She gave it away like it was water.

All that and our life together, making love with Leslie!!!

My soul.

These are the days.