Palliative Care and the Parable of the Unjust Judge

The widow begging the judge “who neither feared God nor respected any human being” for a just decision in her case (Luke 18:1-8), reminds me to persist in our what often seems to be fruitless global advocacy for publicly funded palliative care. Luke tells us “for a long time the judge was unwilling, but eventually he thought, ‘while it is true that I neither fear God nor respect any human being, because this widow keeps bothering me I shall deliver a just decision for her lest she finally come and strike me.” The governments are still unwilling to fund palliative care because the people they need to hear from are not bothering them enough!

This week, I am in Geneva with other palliative care advocates, mostly physicians, for a Special Session of the World Health Organisation Executive Board. We are asking the WHO to add a palliative care indicator to the new General Program of Work, to measure whether governments are providing the programs the committed to in a 2014 World Health Assembly Resolution.

Although it’s unlikely the WHO Executive Board delegates fear we’ll strike them, it’s challenging to keep pestering them, to repeat over and over again our message that seems to fall on deaf ears. Maybe their ears will be more open to their own citizens begging them to render a just decision to fund public palliative care programs for the patients and families in their own countries struggling with life limiting illness, poverty, and pain. WHO is focusing on TB right now, and anti-microbial resistance, as well as on cancer and chronic conditions such as diabetes, all conditions that call for community level palliative care.

Most people are used to thinking of palliative care in terms of cancer and end of life, but it is time to inoculate policymakers, as one colleague in El Salvador puts it, with the virus of palliative care for all serious conditions before immanent death. With palliative care people can enjoy their lives and families again; many can continue to work and contribute to society.

When I was in my early twenties, I worked on the Nuclear Freeze, which was considered pie in the sky and a long shot, given that the US and USSR had inter-continental ballistic missiles targeting one another’s major population centers during the Cold War. The Union of Concerned Scientists had set the Doomsday Clock at four minutes to midnight in 1981, meaning they expected the world to blow up at any time. It never occurred to me that I would grow old, let alone have children and grandchildren! This summer, the UN signed a nuclear freeze treaty, and while the world is still not safe from nuclear holocaust, what was once totally outsider language is now mainstream and a common goal.

We need to do the same thing with palliative care. Will it take another forty years and the suffering of millions, abandoned by a medical system bent only on cure, denying strong pain relief to the dying for fear of addiction? True, a broad based, often militant, popular movement demanded that production of nuclear weapons cease: some of my hard core religious friends were sentenced to prison for non-violently resisting the nuclear industry, while top physicians from around the world lent scientific authority to the popular movement. This is what we need now to make palliative care a household word: citizen physicians, academics, nurses, social workers, chaplains, patients and families, all clamoring for publicly funded palliative care.

Perhaps it is easier to dismantle wicked policies such as nuclear deterrence than to build new, more humane, ones such as public health palliative care. To the contemporary, market-oriented sensibility, using public funds to care for the most vulnerable, those who are “useless” — is irrational, an anathema. Yet care for the incurable has been a concern of medicine since ancient times, and is central to both the old and new Testaments. Jesus was even called The Divine Physician. The faithful of all creeds care for the widow and the orphan, the halt and the lame, the hungry and the imprisoned, and of course the sick and dying.

Faith-based and charity funded organisations still provide the lion’s share of hospice and palliative care services in the world, but are a drop in the bucket relative to need. It’s time for governments to start shouldering the load. They won’t, though, until a movement of citizen physicians and patients pesters them to give in, like that persistent widow, my very own role model for the work this week in Geneva.

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African Palliative Care and the Ethos of Hospitality

African palliative care, according to Hospice Africa Uganda (HAU) founder Dr. Anne Merriman, is based on an ethos of hospitality, which manifests as a unique blend of indigenous and Benedictine spirituality. This ethos of hospitality resonates in the universal Ugandan greeting, “You are welcome”… welcome into my home, however humble, however grand. The Benedictine strain comes from Dr. Anne, who was a member of the Medical Missionaries of Mary (MMMs), a religious order that lives by the Rule of St. Benedict, which is rooted in welcoming all guests (at the monastery or convent) “as if they were Christ.”

Faith, although not pegged to a specific denomination or spirituality, is coded into the DNA of African palliative care. Hospice Africa begins the day with 5-10 minutes of prayers for students and staff alike: hymns are sung, drums drummed, and announcements made in community before the serious business of tending to the poorest of the poor with life limiting illness begins.

According to Dr. Anne, “in palliative care, we see our relationship to God through our relationship to people. Our prayer is our work: not something we necessarily have to do in a church.” In her orientation talk to new hires, she gives the mustard seed history of Hospice and defines “integrity” as “the virtue of basing action on principles,” the principles of Hospice being to always place the patient and family at the center of our actions in all domains. Quoting Bishop Dowling of South Africa, she says that hospice ethos “reflects how you ´[staff] relate to the patient, family, and community.”

Dr. Anne lives her ethos of hospitality, welcoming the thirty odd members of the incoming class to her house for a party that features speeches, introductions, dancing, great food, and a final candle lighting ceremony, which reminded me of the Easter Saturday vigil service. This universal mass begins with the lighting of the large paschal candle, symbolising the light of the resurrection in the darkness of the world. Indeed, Dr. Anne tells the students that “when we relieve pain, there is a resurrection for that person. In our work, there are many little resurrections before the big one!” Even the cake is decorated with a palliative care prayer, “ Welcome Class of 2017: May you grow in dedication to the suffering.”

Hospice Africa Uganda is the “Mother House” that has spawned palliative care services in more than thirty, mostly sub-Saharan, African countries, growing dedication to the suffering in all the students who come through the doors of the Institute. The current first year class contains students from several remote districts of Uganda, Malawi, Zimbabwe, Kenya, and Botswana. One student, John Bosco RN, came from Adjumani, the site of the largest refugee settlement for people fleeing the conflict in South Sudan, in order to learn to provide palliative care for his patients in the camp health center. Patients diagnosed with cancer and HIV/AIDS have no palliative care except what little is available to both refugees and locals at the overstretched local hospital. His training is supported thanks to the support of Global Partners in Care and the Palliative Care Association of Uganda.

Challenges of African Palliative Care Advocacy

From my perspective as a palliative care advocate in all the UN Organisations, including the Commission on Narcotic Drugs in Vienna, it is sad that the Ugandan diplomats seem unaware of the tremendous leadership their country is taking in this area of healthcare for the most vulnerable and marginalised populations. This leadership is an example of best practice towards implementation of the UNGASS2016 on the World Drug Problem, as well as achievement of several of the Sustainable Development Goals of Agenda 2030. The Ugandan government policies and laws that allow specially trained nurses to prescribe morphine, for instance, are unique in the developing world, and should be showcased.

Uganda could legitimately exercise its bragging rights about palliative care services, citing up to date studies that show the efficacy of nurse prescribing of morphine with no diversion to illicit channels. The international community needs Uganda to serve as beacons to other countries trying to improve access to controlled medicines for palliative care. In biblical terms, the Foreign Affairs ministries of Uganda and Kenya, to name only two of the countries leading in providing access to oral morphine for palliative care and pain relief, are hiding their lights under a bushel — the bushel of their diplomats’ lack of awareness.

Few if any, diplomats serving in Vienna, New York, and Geneva know what palliative care is, and what is required for progress towards this essential service under Universal Health Coverage, a policy priority for the World Health Organization. Once the national and regional palliative care associations make them more aware, the Ugandan missions can share the ethos of African palliative care throughout the UN system, explaining how the African palliative care ethos aligns with the Sustainable Development Goals. leaving no-one behind, and prioritising patients and families in the most vulnerable households. Through its communicative and clinical ethos, palliative care can help households avoid catastrophic out of pocket expenses and avoid the health poverty trap driven by weak public health systems staggering under the burdens of HIV/AIDs and AIDS related cancers.

Dr. Jacinto Amandua, a retired Uganda MoH staffer, cites the challenges of Ugandan palliative care advocacy as the constant rotation of ministers and government officials, few of whom are palliative care literate. He recommends an individual approach “like catechism,” and tells students to “go to where the people are — in the parliament, in the churches.“ Dr. Amandua’s famous and very quotable mission is to make “palliative care as available as air.”

Fortunately, the international normative framework stipulating palliative care and access to pain relief as a human right, is now in place. This international legal framework gives palliative care providers legal cover (a pallium) for their essential work even when national governments change. The challenge of African palliative care organisations is to get governments to pass funded policies to sustain the ethos of hospitality when patient loads increase, as they inevitably will, and charitable donations fluctuate. May the ethos of hospitality migrate to the highest levels of government!

Setting our faces toward Jerusalem

Today I was in bits reading the news about our US President’s ban on individuals from specific (Muslim) countries entering the US, even if they were US citizens, or held legal immigration status. My social media feeds are outraged. The fact that the administration announced it on Holocaust Remembrance Day made the order particularly ominous.  Several federal judges have already blocked the order on grounds of unconstitutionality, and there have been large demonstrations at international airports around the country where citizens and residents are being illegally detained.

This feels like a constitutional crisis.  It feels like the period before the Third Reich consolidated power, when many thinking people could not believe what was happening, that the situation would blow over, etc.

What particularly undid me was a photo I reposted on FB, a poster that read “First they came for the Muslims…not this time motherfucker!”

I don’t know if everyone will get the reference to Brecht, or to Martin Niemöller but I grew up in post-WW2 Europe always wondering how I would react if I had been faced with the moral choices that the Holocaust presented to ordinary citizens. The “this time” in the poster I shared says that some of us at least learned the lesson, and will resist. That feeling resonated with who I am now, a christian called to give up her life for her friends, who prays for the courage to do just that. I am called to witness, we are called to witness, and turning away makes me guilty of the crimes against mercy, or at least an accessory. 

It was no accident that today’s readings (fourth Sunday in Ordinary Time) were from Psalm 146-7: “The Lord loves the just/the Lord protects strangers,” and Corinthians 1:28 “God chose the weak of the world to shame the strong, and God chose the lowly and despised of the world, those who count for nothing, to reduce to nothing those who are something,” AND the Beatitudes.  Slam dunk.    I have great role models — Fr. Maximilian Kolbe, Dietrich Bonhoeffer, Edith Stein, Alfred Delp SJ and many other christians who could not remain silent when gospel values were systematically violated by the state.

dietrich-bonhoeffer

Fortunately, inspiringly, some church leaders are speaking out: Pope Francis and Fr. Jim Martin, SJ to name only two. I trust that US religious leaders are planning an ecumenical rally at the Capitol to protest this scandal and remind the administration about the law of hospitality. I was just listening to Congressman John Lewis, veteran of the violent US civil right struggles, telling Krista Tippett that the march from Selma to Montgomery was “love in action. We do it not simply because it’s the right thing to do, but it’s love in action. That we love a country, we love a democratic society, and so we have to move our feet.”

Moving our feet can also involve dancing, as Rumi sings: “Dance, when you’re broken open. Dance, if you’ve torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you’re perfectly free.”  So we march, we dance, we write, we mourn, and are blessed in so doing, according to today’s readings. Continue reading Setting our faces toward Jerusalem

“Hidden Patients Hidden Lives” in Addis and Kampala, August 2015. Written for World Hospice and Palliative Care Day Oct. 10, 2015

One of the things I love about my job is that I am privileged to go out with homecare teams of physicians who know me in Uganda and Kerala. This last time, I was fortunate enough to be taken out by the Hospice Ethiopia [http://www.hospiceethiopia.com/] team to see two HIV positive patients younger than me, dying from cancer in their very humble homes.  [http://hospicecare.com/about-iahpc/publications/newsletter/2015/09/]  We saw two patients, both hidden away in the very poor areas of Addis, being cared for by a brother, sister, wife, or neighbour, in one case where no relatives are available.  The solidarity was beautiful to see, and it was so great that we could help, especially with pain relief.

I was curious about how Hospice Ethiopia was able to get these poorest of the poor patients, on their radar. Our Medical Officer, Dr. Ephrem, said they were referred by Black Lion Hospital, which is now in the “Pain Free Hospitals” project of the American Cancer Society [http://hospicecare.com/about-iahpc/publications/newsletter/2015/09/]. When there was “nothing more that they could do,” the oncologists sent them to Hospice Ethiopia.  Fortunately the Pain Free Hospitals project is teaching physicians about pain management and palliative care.

In both Kampala cases taken care of by Hospice Africa Uganda http://www.hospiceafrica.or.ug/, a volunteer at a local HIV support organisation, had made the referral. Mary was an HIV+ woman, lived alone in a one-room shack in what is euphemistically called an informal housing development,  A widow and an orphan, she was referred for pain control by a volunteer at the place she gets her ARV meds. Mary and JoyceSince Mary can barely walk, so it can’t be far.  A shout-out for volunteering, the heart of palliative care.  What Mary wanted as much as her oral morphine, was a bible, so we went out and bought one for her and brought it to her house. She was beyond thrilled at the gift, which we all wrote in!

The HIV medicine distribution folks, who are very well organised, have excellent coverage of the complex Kampala informal housing areas.  This particular one was faith based, and realised Mary needed the extra layer — palliare [L: cloak, to cover] palliative care provides, and referred her to HAU.

The other patient we visited, who I shall call ‘Charles’, lay on a palette overlooking the vast vacant lot where boys planed dusty, energetic football, because he did not wish to remain inside their small house. Since it was fresher outside, we had my first ever outdoor consult and then went inside so the doctor (who was visiting from Ethiopia to see how things are done in Kampala) and nurse could examine him. 

It was an extremely intimate and emotional visit.  An HIV+ man with advanced cancer, in his late 40’s perhaps, be broke down and cried at the generosity of his wife, who had taken on the role of family provider, as well as chief carer ,and young mother.  He also wept, he said later, when he could speak and the nurse could translate his native tongue into our English, because we were generous enough, and cared enough to visit him, to pay attention, and treat him in his home.  Our visit gave him unsolicited respect, dignity, pain relief, and expert care such as he had rarely received in his life.

IMG_9786

In the end we prayed together, holding hands, the leader, Nurse Joyce, speaking in Luganda, so that the man and woman being prayed for could understand her request that they be helped to face the coming days with serenity and trust  Joyce,trained at the Hospice Africa Uganda Institute, is one of the few nurses in the developing world able to prescribe morphine, she was able to leave a bottle of it for Charles’ pain, with the promise to visit the following week. http://www.lifebeforedeath.com/movie/short-films/15-nurseinthehouse.html

As we drove away, the housing project swallowed Charles’ significant suffering, into itself.  We had tried to convey that it was our privilege to visit him, thanking him for the opportunity to serve, knowing there were hundreds, perhaps thousands, like him that we could never reach, hidden in plain sight in the city and surrounding countryside.

Much more must be done to let the hidden patients and their carers know about palliative care and hospice services, however small and fledgling they are. People should not feel like throwaways, for whom “nothing more can be done” and whose dying is an eyesore to the fragile healthcare system, with its growing private sector. If they are not found by palliative care teams, they must hide their their shameful suffering and pain.  Palliative care offsets the disdain of a medical system designed to cure, with a willingness to remain with the patient and family to the end, and sometimes beyond.

Much more must be done to offer courses in palliative care to medical students, doctors, nurses, and pharmacists in the least developed countries.  I can’t tell you how many students approached me for bursaries at the Institute at HAU, thinking mistakenly that I held the keys to a scholarship fund.  Then again, tuition, compared to US medical school fees, is ridiculously low at HAU, and the need so enormous.  I wish did hold the keys to such a fund.  There is so much hunger to learn in Africa!

Palliative care organisations can find hidden patients if they have good community networks that can make referrals, and a trained volunteer corps whose basic expenses are met.  Successful networks require relationship building and partnership, something palliative care is good at.  I have faith in what Margaret Mead called “endo-symbiosis” a model of mutual support and thriving drawn from the plant world, which exemplifies the virtues of collaboration over competition to benefit its own survival. [http://www.onbeing.org/program/mary-catherine-bateson-composing-a-life/7968].  Palliative care needs to be “as available as air”  as one of my Ugandan colleagues, Dr. Jacinto Amandua, put it recently at the Palliative Care Association of Uganda conference [http://pcauganda.org/].  Then the hidden patients could all breathe it.  This requires advocacy for funding and training.  A palliative care peace corps, similar to the ‘barefoot doctors” in Nicaragua who worked for a pittance when I was there in the 70’s, could accomplish that! http://www.amazon.com/Barefoot-Doctors-Quiet-Revolution-Book-ebook/dp/B00FJQNICC

Patients should be able to die at home, with impeccably delivered palliative care, if that is what they want, which most have said they do. Happy to receive Bible The Special Rapporteur for Housing in Geneva, Leilani Farha, talked to me about how me might develop that as a right. May it be so.

“God’s Own Medicine” — morphine as food for the journey, by Dr. Katherine Irene Pettus, PhD

StyxThe Corpus Christi Sunday bulletin in Nairobi on June 7, 2015 had a short article that read in part as follows: “The very earliest Christians, when celebrating the Eucharist, would send a fragment to the sick and the dying people who were unable to be present.  Records dating back to AD 100 also tell us that a portion of the Eucharist would be carefully preserved in a safe place to be given to those in danger of death as viaticum or “food for the journey”.  […] In the twelfth century, the Church legislated that the Blessed Sacrament was to be reserved in a “skilfully constructed and safely locked tabernacle.”

VANS 60
VANS 60

I couldn’t help but think about morphine when I read the passage in the bulletin: about how appropriate doses for the sick and the dying, are also “food for the journey” across the  River Styx and must also, under civil law, be locked in a tabernacle, or small chest.

The word eucharist comes from the Greek “eukaristos,” which means “grateful” and is now usually translated as “thanksgiving.” It refers to the Christian sacrament of the Lord’s Supper, and has become synonymous with “Communion” or “Holy Communion. Morphine, like the blessed sacrament, can be the best medicine for the dying, and people in severe pain and terminal distress.  Morphine, too, must be kept in a locked container, since a dense thicket of rules springing from fear of ‘diversion and abuse” surround its manufacture, distribution, and dispensing.  Only certain people, usually doctors, are allowed to prescribe it (like only priests are allowed to consecrate the host).  The many restrictions surrounding the use of morphine, most of which derive from politically induced moral panic and subsequent lack of medical education around pain management, mean that the majority of people in the world who need it for pain relief, can’t access it. 

Morphine vault

When I was in Uganda going on home visits to hospice patients in the countryside around Kampala with a nurse who was trained to prescribe morphine (Uganda is the only country in the world that allows nurses to prescribe opioids), I asked her what it was like to bring pain relief to people who had been without any for a long time, who had been told they had to live in excruciating pain before they die.  Her whole face shone when she replied that when the morphine takes away the agony they have been enduring, often for months or weeks, they hold the bottle in both hands and say “this is my God…now I am at peace”. 

Back in 1680, the English Hippocrates, Physician Sir Thomas Sydenham  attributed the gift of the opium poppy — the biotic source of pharmaceutical morphine — to divine benevolence, stating famously that “Among the remedies which it has pleased almighty God to give to man to relieve his sufferings, none is so universal and efficacious as opium.”   And indeed the WHO calls morphine, derived from the opium poppy, “the gold standard of medication for pain management.”

Beginning in the early twentieth century, the world’s “great powers” decided, in their infinite  wisdom, advised by Episcopal Bishop Charles Brent, to designate morphine, opium, and certain other psychotropic substances as “narcotic drugs.” Decades later diplomats classified these drugs into “schedules,” each of which entail a specific degree international control.  Parties to that first UN treaty, the Single Convention on Narcotic Drugs, agreed to place morphine in Schedule I, penalising non-medical use, which they feared would cause serious harms to public health. The end result of endowing opium and morphine with this property to potentially cause such “evils” (the word used in the treaty) as addiction and premature death, has meant that few medical schools train doctors or nurses to use it, and most countries, succumbing to the moral panic, have enacted laws and regulations that harshly punish diversion, misuse, or the suspicion of either.

opium poppy

As a result, God’s own medicine, considered by the WHO as “essential,” is unavailable in most of the world, particularly in the poorest countries, which need it most, and can make it up as a liquid from inexpensive imported powder. Prevention and treatment programs available in the global north are non-existent in many low and middle income countries, and most cancer patients only present very late at rural health clinics or distant hospitals, which send them home saying “nothing more can be done” in terms of treatment.  Of course much more can always be done where palliative care services exist, but providing palliative care is challenging where morphine is inaccessible, and currently it is unavailable in less than 10% of the world http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.

The UN Economic and Social Council — the institutional “parent” of the Commission on Narcotic Drugs, has been passing resolutions on the problem of lack of access to opioid medicines in much of the world, since 1995 — for twenty years!  ECOSOC has been joined by other UN bodies, global and regional palliative care and pain associations.  USAID, DfID, and European development corporations are working on the ground to improve training and access, but progress is excruciatingly slow, change is not reflected at a systems level, and morphine remains bound in its scheduling straitjacket. 

The Catholic church, which treats millions of persons every year in its clinics and hospitals, and trains tens of thousands of students in its schools, and preaches to tens of millions of people in its churches, could help restore God’s own medicine to her people, now!  Pope Francis has already articulated his support for palliative care for older persons and children, but has stopped short of saying that Catholic medical institutions must make rational use of morphine routine for patients suffering from severe pain. He too, as his public statements about drug addiction reveal, remains spellbound by the time-worn ideological narrative that focuses on substances as inherently dangerous, rather than recognising that it is the vulnerability of persons that predisposes them to self-destructive behaviours, only one of which may be substance dependence.IMG_7775   

The author with Dr. Anne Merriman, Hospice Africa Uganda Founder, and Dr. Amandua Jacinto Uganda Ministry of Health, visiting Archbishop Michael Blume Papal Nuncio, in June 2015 (Missing Rose Kiwanuka, RN. Palliative Care Assn. of Uganda, ED)

Some colleagues and I had a very good meeting in Kampala recently with Papal Nuncio Monsignor Michael Blume, who supported the idea of encouraging the Holy See to speak out at the UN on the need to improve access to essential controlled medicines such as morphine. The Vatican could do a lot to support Uganda’s mission to train nurse prescribers and palliative care providers all over Africa. I sent Mons. Blume a fact sheet, available at  https://www.scribd.com/doc/269347667/Fast-Fact-Sheet-Global-Morphine-Availability-for-Papal-Nuncio-Kampala, which I hope will serve as food for thought, reflection, and further research on the topic. Ensuring that “God’s own medicine” is available to all God’s people who need it, no matter how far away they are from a clinic or hospital also aligns with Catholic catechism, which states “The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as an end or a means, but only foreseen and tolerated as inevitable.” (CCC, n. 2279)  It goes on to call palliative care “a special form of disinterested charity.”   Archbishop Blume quoted that line to us from memory!

Catholic medical institutions I visited in South India earlier this year, also host palliative care programs that care for terminally ill, abandoned, and mentally ill.  Rural palliative care might not exist without the church in India.  Their sisters do wonderful work, and their medical staff need to be encouraged to learn to use morphine and other opioids when indicated.  The theology is there, the infrastructure and staff are there, so it would be great to have some informed leadership from the top.  Our enlivening visit with Monsignor Michael Blume contributed to that effort in East Africa.

Palliative care as transformative practice: 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, families, and health systems 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 the vision of universal palliative care can become a reality!