Palliative care as transformative practice: Happy New Year blog dedicated to my hospice/palliative care friends and colleagues around the world

Palliative care transforms everyone who participates in it — who gives and receives it — from the inside out.  It also has the power to transform systems from the inside out.  Palliative care practitioners need public recognition and funding to accomplish these transformations for the benefit of patients and families around the world.  Palliative care ethics cut against the grain of profit-oriented systems that reward individualistic, rather than socially embedded, conceptions of health and wellbeing.

Palliative care values people as human beings, as ends in themselves. Its ethical compass overrides the dominant system priorities, being pointed at the moral imperative of alleviating vulnerability and distress.

By identifying and attending to pain along multiple dimensions — to “total pain” — palliative care affirms the inherent value of the person.  Its concern with suffering amounts to a declaration that our common mortality makes us all, no matter how ill or debilitated, equal. In that sense, palliative care is profoundly democratic and non-elitist.  That in itself is transformative.

The qualities and virtues palliative care builds in practitioners at the bedside (the microcosm) have the power to shift world views in the macrocosm. It is not overstating the case to say that the development of palliative care represents the beginning of a paradigm shift. Unlike their patients, palliative care practitioners and advocates have voice and influence in the public world, and are using it to call for the discipline’s integration into national and global health systems as a matter of justice.

Palliative care advocates such as myself and my colleagues who work at the international level, remind countries of their human rights obligation to institutionalise palliative care as part of the right to the highest attainable standard of health. This requires that they develop policies and allocate funds to support it.

The strategy of presenting palliative care as a human right, rather than as an option, allows policymakers to see it as a universal need rather than a political football. Populations all over the world are rapidly ageing, the prevalence of non-communicable diseases such as cancer, diabetes, and heart conditions, is increasing. Funders and policymakers realise that they and their families will also need palliative care in the not so distant future. Universally recognisable needs rarely cause political fights.

Palliative care practice is politically subversive, although not in the conventional sense of political campaigns that cause harm by seeking power or shaming opponents. Its virtues and ethics are deeply political in the classical sense though, a sense that has been largely forgotten, but is immanent in our political DNA. These virtues are expressed in the friendship, courage, and honesty (truth-telling) that exemplify best practice palliative care.

When the ancient citizenship virtues are practiced in the modern context of the private realm, at the beside, palliative care communities are actually reconstructing the genetic material of the public sphere, much as stem cells do. They are rebuilding damaged ethical tissue from the inside out, causing the dominant system or politeia — body politic — to shed its old skins, and reorient itself toward the common, rather than the private good.

Snake_skin_coil

Palliative care and hospice practice inspires learning along spiritual, as well as clinical and psycho-social dimensions. Practitioners’  proximity to death and embrace of vulnerability, advances the emotional intelligence of society as a whole.  We have the privilege of accompanying people who are journeying between the worlds, our ‘patients.’ They and their personal caregivers have so much to teach us about what is really important during their final months and days.

Those teachings usually concern the values of surrender and open-heartedness, as well as struggle. Surrender, paradoxically, opens human consciousness to truths and realities that are not otherwise apparent when we are immersed in the more “worldly” dimensions of achievement and commerce.

Bedside practice teaches us to slow down, listen, and be respectful of both the “undignified” and the unfathomable.  What we learn there informs our family and public lives. It creates a ‘meme’ that can replicate effectively, transforming other key domains of our worlds.

May it continue to be so in 2015 and beyond, and may the vision of universal palliative care can become a reality! Happy New Year to my wonderfully subversive colleagues in palliative care around the world.

Gratitude for my daily yoga discipline! And a ticket to Antigone tonight.

 

Today my slacker self didn’t want to do my 10-15 minute yoga practice before breakfast. The lazy and disconnected Katherine wanted the upper hand. Well-rehearsed excuses trooped on stage for a hearing, begging for my attention. “You’re doing fine, you can skip today, it’s Sunday…etc.” WHY BOTHER??

And I had even started mixing up the asanas so I wouldn’t get bogged down in a stale routine, even though I try to attend to each new breath and sensation through every pose. Monkey mind was doing its utmost to trump best intentions and wallow in the emotional high/low of yesterday’s lovely meeting with, and farewell to, a very good friend I don’t want to leave when I go away on January 1 for a few months. Yoga practice forces me into the present and forbids wallowing!

Fortunately, the habit of discipline trumped the desire to weep, so I turned on the amazing Arabic Christmas Carol (Byzantine Hymn of the Nativity)

and began with some slow, attentive sun salutations. Shoulderstand, plough, and fish pose to the reading from gorgeous Colossians 3:14-17 “Clothe yourselves in compassion…which binds us all together in perfect harmony.” Deep in breath, long attentive exhale. I can do this, I can get through the next few hours as light breaks into the long fresh cut in my heart (thanks Rumi!).

I usually do my yoga practice listening to the British Jesuit’s recording of the previous day’s Pray as You Go episode (http://pray-as-you-go.org/home/). I find I can breathe the readings deeper into my cells hearing them again after praying with them the day before. Eagle pose, left leg trembling with the strain of holding my crouched body…listening to the readings from St.Stephen’s Day.

eagle-pose-lo

The narrator tells us in her annoying, breathy voice: “Jesus promises us the Spirit as a powerful ally; through the Spirit God will be able to speak through us. Is there a time coming when you feel the need of that same help?” Yes, my spirit snaps back, duh!… I need help writing my book.

My publishers gave me an extension until February for my book “Palliative care and political theory: honouring and healing the body politic”. Most of it is written, but the hard part is wrestling it into shape and writing a coherent and inspiring introduction, which is what I’m doing now. The Holy Spirit will be a class act assistant.

As I finish with Triangle on both sides (left ribs still sticking together!), I bow and give namaste to the snowy dawn, feeling stronger, more resolved, less flaky and emotional, grateful that the discipline kicked in to align me with whatever this day calls on me to contribute.

And a miracle cameth! My friend Agi called to say she had found one last ticket to the sold out dance performance of Antigone tonight at the Palace of Arts, in the very back row, half price! It’s the Carl Orff score, Yvette Bozsik Company performance, so bound to be magnificent. My Hungarian was not up to the checkout process, so she did it for me and I have the ticket for tonight. Quelle reward for discipline! How wonderful to have friends who go the extra mile for you! Now I’ll tramp out in the snow to the Yemeni printers who are actually open on Sunday off Jokai Ter.

Not home alone: Christmas eve dinner in Budapest with Agi, Emmanuel and Toby

Because I am without family and close friends this Christmas, I had invited people from my English mass community who would otherwise spend Christmas eve alone, to come over for dinner.  At first no one responded to the general email invitation sent out to the list serve, and then at tea after mass the other night, a couple of people told me they would come.  I also asked three young students from Cameroon what they were doing and gave them my email when they said they had nowhere to go. But I didn’t hear from them until the afternoon itself, when one of them wrote and said five of them would come. I replied that five was too many because we already had four confirmed including me, and I didn’t have food for nine. In retrospect, that was very ungenerous of me! We could have stretched the food, but I didn’t trust that I was up to loaves and fishes.

Since the students didn’t want to leave any of their flatmates behind, they decided to stay home and celebrate together. It turned out that they thought I meant the dinner was Christmas day, not Christmas eve. Refusing to have all of them seemed like a failure of hospitality, though, which I value as a major virtue.  It bothered me all afternoon.

But two other people  from the English mass came over — Toby who works at the US embassy, and Agi, a Hungarian woman who speaks fluent English and sings in the choir. The third guest was Emmanuel, a young Pakistani man who is a friend of Sr. Mary, one of the Franciscan Missionaries.  When I told her I was cooking for strays, she thought of him right away. Emmanuel is a computer engineer by training who now works in an Indian restaurant and speaks Hungarian. Astonishingly, he learned after he became friends with her here, that Sr. Marjeen, one of the Franciscan missionaries, knew his sister in Lahore when they nursed together at the hospital there.

I roasted two ducks, made braised red cabbage and apples the day before, and Hungarian mashed potatoes with smoked paprika. Agi brought a delicious, rich traditional desert made with butter, sugar and biscuit crumbs, Toby brought a white raspberry cheesecake, and Emmanuel brought apple juice. We said grace, chowed down, and talked about our lives, but mostly about Pakistan, and why Emmanuel had chosen to leave — “it was too hard to be a Christian there — I hate that about my country.”

After dinner, we went to the living room and  sat around the lit advent wreath singing carols. Agi, the cantor, led us through most of the old favourites. What a miracle! Because it was Emmanuel’s birthday, we lit a candle on the cheesecake Toby had brought and sang happy birthday. It was interesting to hear about how the besieged Pakistani Christian community celebrates Christmas, singing carols as they go door to door and collecting each family at their house, making their way as an ever growing group, to midnight mass. Christians are 2% of a majority Muslim country, and only continue the faith through family lines, not conversion, since anyone who converts from Islam faces death at the hands of the community.

Toby and Emmanuel

Emmanuel told us that most Pakistani Muslims blame Christianity as a whole for the US military actions against Pakistan that have killed many civilians since 9/11. They identify Christianity with militarism and the west, just as many westerners identify jihadist groups with all Arabs and Islam.

After they left, and I had cleaned up and loaded the dishwasher, I read the evening Scripture, which was the beautiful first letter of John 4:7 “anyone who loves …knows God.” It was such a lovely surprise and gift to read. I hadn’t expected it at all, after the weeks of reading the prophets, and the Christmas narrative, to get straight to the heart of it all, love.

KP Christmas

 

Nicaraguan Nativity

 

My oldest son Pablo was born in Managua, during the contra war. We had moved to Nicaragua in December 1982, when I was five months pregnant, because my ex-husband, a Salvadoran Episcopal priest, had a job with the church there. When we arrived, one of the first things I did was to find a midwife who would come to the house — I wanted a home birth — but one day in my seventh month she knocked at the door and said she couldn’t do the delivery because the new Sandinista Healthy Ministry had outlawed home births in the hope of reducing the country’s high infant mortality rates.

It was a challenge to find a new ob-gyn at that late date, especially a female doc, which was my preference. I finally found a woman I liked a lot, who agreed to deliver me at home, but when my water broke one afternoon, and I called and told her my labor had started, she said she couldn’t come because her daughter was sick. Appalled, I asked her what I was supposed to do, and she told me to go to the public hospital, where they would induce me and there were two women to a bed. So much for my plans for a home birth! What to do? I knew I didn’t want to be induced, and that afternoon my solidarity with Nicaraguan women didn’t extend to being in the public hospital with two women to a bed! Night was coming, with a city wide curfew, and I was in labor with my first child.

My husband and the church driver, who was a contra sympathiser — which meant he was very hostile to us, as fellow travellers with the liberation theology movement and the revolutionary government — brought the old and unreliable car around and decided to try some of the local hospitals. Nicaragua was under a US blockade, so we couldn’t get car parts, or medicines, or any other essential items, so if the car broke down, we were stranded. I remember going to the pharmacy and asking for aspirin once, because the baby had a fever, and being told ‘no hay’ — the commonest words in Nicaragua then — ‘there aren’t any.’

I don’t remember much of that night, except driving around for what seemed like hours, and stopping every so often to find out if a hospital would admit me, only to be told it wouldn’t. One of the few blessings of being in labor (in the back seat of a car) is that all you can focus on is breathing through the waves of pain. I figured the men in the front seat would take care of the rest. That was Joseph’s job too! I had no idea how to pray, being quite the heathen…I just focused on my breathing.

Although married to a priest, and committed to the social gospel and the preferential option for the poor, the Church itself, and what I called the ‘hocus pocus’ left me cold. But the people, the priests, sisters, and lay catechists we met and worked with in Central America, inspired me beyond anything or anyone I had ever met before. They gave up their lives, day in and day out, for their people, who lived on next to nothing, toe to toe with violent death at the hands of the military and paramilitary forces, largely funded and trained by the US. It was an extraordinary and humbling privilege to know them. That was how I understood faith then, not as organised religion. I worked with the women at the Salvadoran refugee camps, raising funds through my friends in the US for sewing machines so they could support themselves with small businesses.

Salvadoran refugee women

Photo: Donna De Cesare from “El Salvador’s Children of War” Mother Jones

I vaguely remember being told that the first hospital we pulled up at that night had no free beds, and the second had no available doctor. The third, the Baptist Hospital — to which I will always be grateful — had a free bed, but wasn’t sure if any of their doctors on call would come in to deliver me. The nurse at the front desk seriously doubted anyone would, but said she would call through her list to find out.

Apparently few Nicaraguan doctors would risk delivering an American woman at that time. The US was waging what was euphemistically called “low intensity warfare” against the Sandinista government in the early 1980’s, arming and training the ‘contra rebels,’ guerrillas who would attack villages and schools in the countryside, executing and massacring civilians. My husband used to go and do funeral services in those villages.

Managua was on war footing for a US invasion, and all civilians, including me, who had never handled a gun before! had to do guard duty, since I worked in the Council of State as a translator.  The US, as Nicaraguans would dryly remind me at every possible opportunity, was ‘el enemigo de l’humanidad‘ — the enemy of humanity. Their national anthem said it was so, and American advisors were training the soldiers who were killing them.  And as the US found out during the Iran-contra hearings, their salaries were paid by CIA run narco-trafficking.

Bowling For Columbine

I was put in a small dark room by myself while the nurse called around. Luckily, I had read a lot about birth and labor during the previous nine months, mainly the classic Spiritual Midwifery, so I knew something about how to breathe through the contractions and keep my mouth loose. Although the pain was like nothing I had ever experienced before, I knew to expect it, and was grateful for the ever-shortening lull between contractions, which allowed me to prepare for the next more intense wave. Eventually someone appeared to tell me that I could stay at the hospital, since the nurse had located a doctor who would be in soon to deliver me. Luckily! The pains were coming faster, which I knew from my reading meant that the birth was imminent.

Soon after that— I had lost track of time! — a nurse came to check how far I was dilated and since I was ready, wheeled me into the theatre for the delivery, which was duly accomplished on a steel table, under lights, with an episiotomy, and gloved masked attendants. Not the home birth I had planned or hoped for, but I was safe, clean and sheltered, and my new baby was healthy.

In retrospect, thirty some years later, that Nicaraguan nativity was a harrowing ordeal, but nothing like that being endured by so many women refugees at the moment, or throughout history. Yes, we drove around the dark, deserted, war and earthquake devastated streets of Managua under curfew, looking for a hospital where I could give birth. Yes we were turned away twice, and I was left alone for the labor, but I was safe and sheltered, as Mary was, even in the outbuilding in Bethlehem.

And the extraordinary reward, the gift of my son, overshadowed the dim memory of what could have been a nightmare. I had the miracle of a newborn. I remember when they handed him to me that first time, marvelling at each tiny, delicate fingernail, being in love in a way I had never been before. And I remember the gift of a cup of coffee — hot sweet milky Nicaraguan coffee — that the Magi nurse brought me the next day at dawn, when coffee had never tasted so good, and all of a sudden I was a mother.

Praying the second decade of the rosary yesterday, journeying from Nazareth with Joseph and a very pregnant Mary to Bethlehem through Samaria for the imperial census, transported me into the company of the tens of thousands of families fleeing ISIL in Syria and Iraq.  Heavily pregnant women who, like Mary, are finding shelter, if any, only in the humblest places, giving birth in the cold, unsanitary conditions, on the side of the road, in crowded tents, or abandoned buildings.  It also brought back the almost buried memory of that Nicaraguan nativity almost 32 years ago.  The second Joyful Mystery.

Advent Meditation: Of women, priests, and angels

Of Women, Priests, and Angels

… or why the Angel Gabriel struck the Priest Zechariah and not (the Virgin) Mary dumb, although both questioned his startling news that they would be the parents of extraordinary sons.

Zechariah doubted the announcement because his wife was “advanced in age,” Mary because she had not “known” a man.

But Gabriel robbed Zechariah of the power of speech, so he couldn’t pronounce the blessing on the people after leaving the temple, yet left Mary free pronounce the Magnificat to Elizabeth, Zechariah’s wife, soon to become the mother of John the Baptist. Why such a harsh punishment for Zechariah, a priest in the temple, father of “the forerunner,” and a free pass for an ordinary girl?

Zechariah

Gabriel told Zechariah very clearly why he was being punished: “because you did not believe me” after Z asked, “how shall I know that this is so?” This meant he was asking for a sign, for Gabriel’s divine credentials. Mary, on the other hand, who obviously knew the facts of life but was still a virgin, simply asked a question: “how can this be, since I have never known a man?” Although Gabriel’s startling announcement that she would imminently bear a son clearly didn’t fit the facts of her life, she did not question his authority as God’s messenger.

It’s one thing to be startled by the appearance of an angel (although you’d think they’d be welcome in the temple!) but Zechariah’s fear and astonishment foreshadow Jesus’ warnings always to be on call. He tells us to be awake, aware, receptive, obedient, when the message/messenger shows up. The fact that Gabriel came to Zechariah while he was lighting the incense, performing his priestly duties, and yet Z still doubted, seems to be a commentary on the staleness of the hierarchy and established religion’s receptivity to prophecy, to be always on call.

Mary, obviously not a priest, not a male “insider” with access to the temple — she would have been one of those who would have had to pray outside — although deeply troubled and pondering when Gabriel appeared, told him she would go for it. She accepted the angel’s risky proposition, with all its possibly fatal consequences. The villagers of Nazareth could have stoned her to death, Taliban style, once her pregnancy started to show. She had a lot to lose by saying yes to her appointment with the Holy Spirit.

The moral of these parallel stories seems to be we get in trouble when we ask God for proof, when we rely on rationality and ritual to see us through, rather than joyfully following the divine instructions delivered by unlikely, though authoritative angels.

Proofs of God’s existence (“signs”), of his mercy, evidence of his benevolent interventions proliferate in our everyday lives. Creation itself is an extraordinary, ongoing, relentless, miracle. The paradox of God’s power and communicative action is that we are so saturated in it we no longer identify it as such but take it for granted.

Our life itself is the “sign” Zechariah demands. The unlikely miracles of friendship, the passion of lovers, the endless sacrifice of parents for their children, the kindness of strangers, are all the divine credentials we need. What else are the galaxies, deep space, and black holes but God’s body? Incredulity, like Mary’s is fine: “how can this be?” It is to be expected that we will be startled, ponder, and be deeply troubled, as she was, but ultimately we are to say “fiat” (bring it on!) as Mary did.

Gabriel striking Zechariah mute made the point Jesus makes throughout the gospels, that the old order of insiders (the priests and scholars) just doesn’t get it and should hold their tongues, or at least learn to listen. The new order, teenagers, “sinful” women, children, the blind, foreigners, the despised, do get it. The word of God seems fall straight into their ears and their hearts and they get on with the mission they’re given, no matter how improbable, risky or risqué!

The author with mural of the Angel Gabriel at Christ in the Desert Monastery, Abiquiu, New Mexico.
The author with mural of the Angel Gabriel at Christ in the Desert Monastery, Abiquiu, New Mexico.

On spending Christmas without my family, or close friends, in Budapest this year

The one thing I like about spending the holidays alone is that there is no frenzy of Christmas shopping. Not that I shop a lot when I am in the US with my family, but I definitely think about which presents to put under the tree for whom, which usually means buying things. Then I have to drive out to the shops, although almost never the dreaded mall, and buy things. This year, I did take the tram to the Christmas fairs, mostly to browse the beautiful handmade craft items, and sent a few people the colourful bead necklaces I strung to pass the long dark evenings. I also wrote masses of Christmas cards, lovely Giotto madonnas, to friends all over the world.

Apart from that small but loving effort, envisioning each person as I wrote their name and licked the stamps to put on their envelope, since I am alone most of the time, and have a daily prayer and meditation practice, I have focused on Advent as a season of waiting, waiting for God to be born, both in Bethlehem, and in my heart. This feels like the spiritual version of the Christmas spirit that is otherwise expressed in our impersonation of the Magi, bringing gifts to one another as tokens of love and recognition, usually hoping for something special in return.

Assuming that I would be alone on Christmas eve and Christmas day, since I knew all my close friends here would be out of town for the day itself, I sent out an email to all the members of our English speaking mass community inviting anyone else who was alone, to come to my apartment for dinner on the 24th. I envisioned feasting with strangers who would answer the random invitation from someone they didn’t know, but go to mass with each week, creating communitas over some simple dishes I would have enjoyed cooking. No one answered the email, though, so God must have wanted me to be alone, for a home birth!

In anticipation of this fantasy social occasion, but also for my own enjoyment, I bought a small Christmas tree from one of the many vendors who have set up their wares in Hunyadi Ter, where I live. There are trees of every height, width and genus available, stacked up against the sidewalks and small sheds I can see from my windows. Vendors arrive in the before dawn cold and stay well past dark, standing around for twelve to fourteen hours hoping to make enough to live on for a few months. They stamp their feet to keep warm, smoke endless cigarettes, and chat to mark time. Today is the last Saturday before Christmas, and sunny, so there are plenty of buyers. At night the square is full of sleeping pines and firs, covered with tarpaulins, watched over by a tired guard until the vendors come to relieve him.
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I bought my tree from the one young woman who had actually priced each of her trees, since my Hungarian is not up to haggling, although I was able to haggle over the price of apples in the market the other day! Christmas trees are beyond my capacity right now though, so I bought a charming specimen for HUF3000, or ten euros, and a few handmade decorations from a woman who has a stand at a small Christmas fair near Kalvin Ter. Zsuzsa, who tells me she is seventy, makes her hordes of angels and nativity scenes from corn husks, walnut shells, gourds, and other natural materials, and also spends all day and much of the evening at her stall, or her “pavillion” as she grandly calls it, gesturing me to enter with a sweep of her arm.

Not to be outdone, I made some decorations of my own last night, stringing rose hips and mini-paprikas that I bought from some elderly women at the market across the square, and rescuing a small ham tin from the trash so I could paste in a nativity scene, which I decorated with pine needles. I also have two crimson poinsettias, an advent wreath, and some narcissus I had brought over from the US as bulbs to force here.

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My Christmas decorations are sufficient, simple, and beautiful, in my eyes at least. When I bought some homemade camembert from my cheese man on the square this morning, and he asked if I was ready for Christmas, I was able to say “yes!”. The best thing, of course, would be to have my family here, three sons, their partners and two grandchildren for the whole holiday! Maybe next year. There’s still four more days to go, so maybe some lonely stragglers will write and accept my invitation to the feast!
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