The Dunkirk Miracle and Palliative Care

I came of age in post-WW2, London, still rebuilding from the Blitz — as kids we played in the rubble of the bombed out shells of houses on our block — nourished by the legend of Dunkirk, its David and Goliath dimension, its pulling out all the stops solidarity.

Watching Christopher Nolan’s film “Dunkirk” I identified with the small boats swarming to rescue soldiers on the beaches. Working to establish a global palliative care culture feels a bit like that: engaging with a handful of colleagues in an all hands on deck effort to humanise care for people at the end of life. Setting off unarmed in our small boats in a flotilla to take as many of our fellows as we can aboard and head for home.

Palliative care and hospice units around the world are, almost without exception, nimble operations that barely survive on charity funded shoestrings: the small fry in a big institution, highly professional yet receiving the least recognition. Palliative care providers tend to be those who forgo the limelight in exchange for the privilege of accompanying patients and caregivers through the rough waters of serious illness and dying. In modern societies that stigmatize older age, dying, illness that cannot be cured through heroic healthcare efforts, palliative care practitioners run headlong into the trouble, preparing for the worst as other “healthcare” providers head in the opposite direction, sometimes even blocking their way.

The Dunkirk boat captains saw that event as a high point in their lives, a peak experience, the kind that makes life worth living. When they were in the middle of it though, as the film showed, they had no idea if they would come through; no clue they would succeed in their mission. The miracle was only evident in retrospect. Neither do those of us working to establish a palliative care culture know if we will succeed. We persist because we believe passionately in what we do, and believe that what we do matters, just as the boat captains who set sail for Dunkirk believed in their unlikely mission.

As Mark Rylance’s character said when he refused to obey a shell shocked soldier he had rescued, who ordered him to “go home” rather than continue the mission to Dunkirk, “there will be no home if we don’t do this.” Likewise there will be no home, no decent society, if governments don’t support palliative care programs wherever they are needed.

Our teachers and mentors are, of course, our patients, those who rely on our skill and commitment to have as many quality days as possible in the time left them, even when hope for a “cure” is faint. As a volunteer, I am privileged to accompany dedicated palliative care teams in Uruguay, Kampala, Kerala, Buenos Aires, Minsk, and San Diego to visit patients. I can’t help but imagine how those patients and families’ lives would be without those visits, knowing we are seeing only a handful of those in need. It’s the ones we can’t see, the invisible ones in the shadows, who keep me doing what I do, who send me out in my little boat each and every day, to advocate for global palliative care culture, trusting in the One who calms the waters when necessary.

Ocean’s Bridge

One thing “Dunkirk” does not mention, was that King George VI had called for a National Day of Prayer the day before the rescue mission began. According to columnist John Williams, “In a national broadcast he instructed the people of the UK to turn back to God in a spirit of repentance and plead for Divine help.  Millions of people across the British Isles flocked into churches praying for deliverance and this photograph shows the extraordinary scene outside Westminster Abbey as people queued for prayer.

Crowds queuing for prayer outside Westminster Abbey. 1940.

Crowds queuing for prayer outside Westminster Abbey. 1940.

Two events immediately followed. Firstly, a violent storm arose over the Dunkirk region grounding the Luftwaffe which had been killing thousands on the beaches. And then secondly, a great calm descended on the Channel, the like of which hadn’t been seen for a generation, which allowed hundreds of tiny boats to sail across and rescue 335,000 soldiers, rather than the estimated 20-30,000. From then on people referred to what happened as “the miracle of Dunkirk”.”

Palliative care doesn’t command dramatic, desperate, Days of Prayer and heroic rescue missions. Its miracle is wrought daily, in Ordinary Time, through the countless anonymous acts of compassion provided at the bedside. Their cumulative transformative power will be visible only decades into the future, when palliative culture has taken root and the service is a taken for granted by everyone who needs it anywhere on earth.

The Advent of Palliative Care for Persons with Disabilities

The first Sunday of Advent (December 3, 2017), fell on the International Day of Persons with Disabilities. The Advent of palliative care for people with disabilities was heralded in Monday’s Gospel reading of the Roman centurion mentioning to Jesus that his “servant lies at home paralyzed, and suffering terribly.” Jesus healed the servant without (a) being asked, or (b) even seeing or touching him, a technique palliative care practitioners have yet to master. The story can still inspire us to meditate, however, on how we can improve the availability of palliative care for persons with disabilities.

We must begin by asking people with disabilities what services they need to face life limiting illnesses, and how they would like to access such care. We need to ask, what does “healing” look like for you? Perhaps it begins with being seen, heard, and made visible by the rest of the world that does not yet have a disability. The vast majority of people with disabilities are not “paralysed and suffering dreadfully,” like the centurion’s servant in the Gospel, but the vast majority are invisible.

Until my sister Ruth had a stroke and was confined to a wheelchair, I didn’t give a thought to how disability un-friendly most cities are (I pushed her around the Baltimore neighborhood) or how negligent and disorganised the US health system is toward ageing women with disabilities, even when they have
plenty of resources and insurance!

Speaking of how the Convention on the Rights of Persons with Disabilities can support the right to palliative care, Maria Soledad Cisternas Reyes, now UN Special Envoy on Accessibility and Disability, said at an event at the Social Forum in 2016,

The right to palliative care is not subject to progressive realisation. Palliative care becomes a fundamental pillar for the right to life and integrity of the people who need it, and is not limited only to the exercise of their right to health.

From another perspective, palliative care is also essential for the exercise other rights such as freedom of expression and opinion, access to information (Art. 21), as well as enjoyment of the family environment (Art. 23), and inclusion in the community (Art. 19). Like the civil rights listed above, these are subject to immediate realisation and respect, and palliative care is a key factor in their enjoyment

Along these lines, the focal point and coordinating mechanisms for implementation of the Convention must develop actions specific to the promotion of palliative care, which also must be monitored by the supervisory mechanisms at the national level (Art. 33). Today, we are at a crucial moment for implementation of the Sustainable Development Goals (SDGs) and the Agenda 2030, with the motto “leave no one behind”. Therefore, also in the instruments concerning social development we can find a strong foundation of support for the promotion, development and implementation of the palliative care at the national level.

Advent cannot come too soon for persons with disabilities who need palliative care. The Palliative Care Association of Uganda is doing a wonderful job working with the deaf community in that country,
IMG_4204
and the European Association for Palliative Care is working with community groups to provide palliative care for persons with intellectual disabilities.
This Advent is just the beginning. We must do more for those paralyzed with suffering if no one is to be left behind as the Sustainable Development Goals (and the Gospels) proclaim.

“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.