Writing on Good Friday from lockdown in Spain, I am reflecting on what I am grateful for in these very challenging times. My family of course, my faith, and also my job. One of the main reasons I work as a global advocate for palliative care is because I admire and love my colleagues all over the world so much! That love and admiration gets me up every morning to support their work at the bedside by advocating through the UN system for supportive standards, policies, and budgets in all countries, in conformity with international law.
Palliative care is a unique bio-psycho-social-spiritual approach to serious illness whose practitioners, unlike most clinicians, see attention to “spirituality” as an essential element of delivering services, including being with dying. Not being with “the dying” necessarily, but being with dying as a process to which, all life is subject. Spiritual care includes both providers and patients, and creates provisional communities, or ecclesias of care. Spiritual care is not necessarily religious, and can be described in secular terms as a form of friendship, or being for the other, as Aristotle described it.
Ecclesia means “those who are called out or summoned.” Palliative care practitioners are “summoned” to accompany those who are seriously ill, and to alleviate their suffering, physical, emotional, and spiritual. Palliative care teams that escort the dying and their loved ones to the frontiers of the unknown, exemplify what ancient and medieval philosophers called the virtue of friendship. Aristotle described friendship as a relationship that wants only the good of the other, for the friend [not for oneself]. In the Christian context, the virtue of friendship, or spiritual friendship, prefigures the friendship with, and of God. Indeed, in the Sufi spiritual tradition, Rumi calls God “the Friend.”
Both secular friendship and friendship with God demand commitment and practice. As the ancients saw it, the virtues had to be practiced in order to take hold in an individual or a community. When I was taking my RCIA (Roman Catholic Initiation for Adults) courses before my baptism several years ago, my teachers told me that friendship with God was like any friendship, requiring dedicated time, maintenance, attentive conversation, etc. And just as human friendships die when those things are neglected rather than nourished, so does friendship with God. Or it just never gets off the ground. The bottom line for those of us who profess a faith is that unless our work embodies service and love of neighbor, we can’t think of ourselves as God’s friends.
It seems to me that we can practice for or rehearse this friendship with God by hanging out and speaking our truth with friends in this world. Our friends are people who challenge us spiritually, emotionally, and intellectually. They challenge us while loving us for who we are. And by loving them for who they are, we imitate what scripture tells us is God’s love for us. This sort of friendship in the world gives us, or at least gives me, the fortitude to be out in the world and to toil, as Jesus describes it, in the vineyard, one of the metaphors for the kingdom.
Palliative care volunteers, clinical providers, spiritual counselors, and social workers accompany, or escort, patients and families to the frontiers of the kingdom, whatever any of their individual conceptions of that unknown space happen to be. The gospels describe the kingdom as an energetic space where there is no fear. “Fear not” are the two words spoken most authoritatively throughout the New Testament, often by angels, God’s ambassadors.
The kingdom of Jesus’ praxis — he doesn’t just talk about it, he enacts it — is a space where the outsider, the weak, the vulnerable, and the dependent, are accepted and welcomed. It actually invites the seriously ill, weak, paralyzed, and actively dying, to enter this space configured and prefigured by the frequencies of committed friendship. Palliative care is a practice, or praxis, of committed friendship, based on truth-telling, courage, and generosity, the other cardinal virtues.
Of course, the more secularly minded can take God and the kingdom out of the equation altogether, and make the practice of escorting the dying and their families, both spiritually and clinically, a practice of friendship tout cort. Many palliative care providers I know do that. That would be enough. It is more than enough, given that so much energy is needed for palliative care to take root in the world, and for its potential as an agent of social change to grow and flourish. Palliative care prefigures the kingdom whether or not its practitioners think of themselves as “spiritual” or religious. It simply emerges from their work.
One of the hardest aspects of friendship is allowing it to go, either when the friend dies, or when the friendship itself dies a natural death. This is the “black river of loss” Mary Oliver talks about and the need to do three things:
to love what is mortal; to hold it
against your bones knowing your own life depends on it; and, when the time comes to let it go, to let it go.
But what about loving the immortal? Practicing friendship, the loving and the letting go, both among ourselves and with our patients and families, brings what Jesus called “the kingdom” to life, and teaches practitioners, through many fits and starts, to be friends of God’s. That is a status I covet, meaning I have a lot of spiritual work still to do!!
“For nothing is hidden that will not become evident, nor anything secret that will not be known and come to light.” Luke 8:17
One of the most challenging aspects of being a global advocate for patients and families needing palliative care is that the vast majority of those with unmet needs are hidden away from view. They are invisible to the public, health systems, and policymakers. The patients I have seen with the palliative care teams I have gone out with in Addis Ababa, Bogota, Nairobi, and Kerala are as hidden as those who are locked up and dying alone in prison.
Improving access to palliative care for prisoners involves gradually bringing that stigmatized invisible population back into focus for policymakers. I cannot give firsthand evidence. I am not allowed see the conditions under which prisoners die, because the prison is a closed world. I’m not allowed into the cells at San Quentin, only into the visiting area, and into the chapel for a graduation ceremony for men trained to care for dying cellmates. I only can hear what it is like from those who have been released or can talk about it inside to someone else able to get the word out, sometimes through film.
Invisible patients in countries with weak health systems are not concentrated behind walls though. Once they have gone home to their village, barrio, or suburb to die as instructed, they disperse, and the public health service usually loses track of them. They pass through the veil into invisibility. The result, as the Lancet Commission on Pain and Palliative Care pointed out, is that researchers never measure their suffering. And since what is not measured is not done, the suffering continues unabated. It can only abate once advocates make these patients, their caregivers, and their unmet needs more visible to policymakers and funders, retrieving them from negative space by giving them voice. Palliative care teams can only identify and visit the patients who have been sent home to die if hospitals and clinics refer them, extending the net of care, rendering them visible to palliative care providers, and through advocacy, to policymakers.
National and local palliative care associations can advocate for patients and families. They can monitor the referral systems and ensure the ongoing development of a trained workforce and adequate supply of controlled medications meets patient needs. This requires close collaboration with government agencies in charge of health, education, ‘drugs’ and social care. The process of education and advocacy for sufficient procurement of essential palliative care medicines for the relief of severe pain and symptoms such as breathlessness, is ongoing.
Another challenge of this work is accepting the slow pace at which the system change we so urgently need, takes place. It is tempting to get frustrated! Integrating palliative care into health care systems and ensuring adequate access to controlled medicines in the context of drug control systems by definition entails systems change, which is slow. Elites tend to resist it, fearing loss of power. I find it hard to accept that the change must take place in God’s time not mine, when so many patients are suffering so acutely all over the world for lack of adequate care. Van Gogh’s image of the sower helps me to remember we are sowers, not reapers; early adopters who have been fortunate enough to see the value of palliative care, often for our own family members. The challenge is to make the invisible visible so those those with eyes that can see bring about the change. We do that through evidence based advocacy and partnership building.
To go for the brass ring (def) “to try to succeed in an area where there is a lot of competition” (Collins English Dictionary) The term comes from the practice of giving a free ride to the person who succeeded in picking a ring out of a box while riding a merry-go-round. [Slang; late 1800s]
Why grab the brass ring?
Universal Health Coverage, or UHC, has to do with money, both public and private, and what health services that money covers. Ideally, these services are to be universal, meaning all inhabitants of a country are entitled to them. It is debatable whether publicly funded palliative care is universally available in any country. What palliative care provision there is around the world is randomly and precariously funded by charities, faith based organisations, and private individuals, and is far from being universally available. This unsustainable “coverage” situation cannot meet the growing public health needs of aging populations suffering from both communicable and non-communicable diseases, including chronic conditions such as dementia. Palliative care is now a rapidly developing clinical discipline. It is unethical for governments to delegate its provision to the charitable or private sector.
The vision inscribed in the WHO definition of UHC is that “all people and communities can use the promotive, preventive, curative, rehabilitative and palliative health services they need, of sufficient quality to be effective, while also ensuring that the use of these services does not expose the user to financial hardship.” An opportunity to develop and promote this vision is coming in September, when the United Nations will convene a “High Level Meeting” on Universal Health Coverage in New York. Heads of State who attend, or their official representatives, will adopt a consensus political declaration that reflects their policy commitments regarding coverage plans. Negotiations on the text may be ongoing until September.
The latest draft text of the political declaration (at the time of writing) includes two references to palliative care, one of which flags the need to develop services for older persons with chronic conditions. Although this double inclusion represents rhetorical progress at the multilateral (UN) level, the challenge is to join up the dots at the regional and national levels. National palliative care associations will be key players here once the political declaration is adopted with this consensus language. This will provide an opportunity (the “brass ring”) for governments and WHO country offices to familiarise themselves with service providers on the ground, and to enlist their collaboration in the drafting and implementation of comprehensive national plans. The stakes of grabbing that brass ring are very high — for palliative care patients, their families, providers, and healthcare systems themselves. Without UHC, and without integrated palliative care, the “curative” services patients currently “use” at their own expense in most countries, expose them and their families to serious financial hardship. What preventive and promotive services do exist fail to protect households from the financial hardship associated with futile “curative” treatments when these come “too late.” Palliative care can avert some of that hardship that by convening honest conversations about goals of care, from the beside to the health system. Without it, medical professionals are railroaded into “doing everything” and households are driven deeper into the “health poverty trap.” This is why achieving UHC is included in Target 3.8 of the 2030 Agenda for Sustainable Development.
One problem with the wording of WHO’s definition of UHC is that it addresses only health system users. The vast majority of the world’s people with serious health problems are not health system “users” and have no access to preventive or curative services, let alone palliative care. The UHC political declaration under negotiation must include a commitment to provide accessible basic services to the currently invisible populations experiencing serious health related suffering in unserved locations. Palliative care advocates can identify these invisible populations and consult with governments to establish appropriate, publicly funded services.
The recent Chatham House (CH) briefing “Closing the global access abyss in palliative care and pain relief – A top priority in achieving Universal Health Coverage” was convened to analyse the abyss and discuss how to promote palliative care as an essential service of UHC. Participants agreed on the indivisibility of the spectrum, which ideally should prevent and treat much of the suffering palliative care practitioners now address and accompany when “nothing more can be done.” This is an ethically unacceptable state of affairs from a systems perspective.
Again, ideally, palliative care should fill the key health needs of populations whose mortality is no longer preventable or treatable in a public health system that meets basic needs. Appropriately addressing the needs of this population will liberate sections of the healthcare system that are currently jammed up with futile procedures, rescue medicine, and communications that sell false hopes for a cure. According to one researcher at the Chatham House meeting, doctors and administrators need to understand how palliative care can help them do their jobs as cardiologists, GPs, etc. Those who see palliative care as a rival for scarce professional recognition and resources act as a barrier to palliative care development.
Indeed, one senior palliative care physician at the CH meeting identified the medical profession itself as both a cause and accomplice to suffering: “We need to start discussing the fact that doctors don’t feel it is their job to relieve suffering.” The profession is an accomplice to serious financial and existential suffering when it engages in therapeutic obstinacy. Palliative care providers often get patients and families who have been battered by the healthcare system already and have lost their only source of income and stability. Serious illness doesn’t subtract only one family member from the economy, it also subtracts at least one caregiver, who is either a wage earner, grandparent or a student who has to drop out of school. Establishing community level palliative care supports households and local economies, the basis of sustainable development.
Meeting process: the meeting was legitimated by inclusion of service users (“affected populations”) from the UK and Uganda, patients whose lives have been improved and extended by palliative care, including appropriate use of opioid analgesics. All had received palliative care for serious health related suffering, including for HIV/AIDS, cancer, and rare genetic conditions. They demanded patient involvement in all stages of the advocacy, policy development and implementation processes. All who spoke at the meeting, both live and through video link, emphasized the fact that, without palliative care they either would be dead, or better off dead. They discussed how palliative care’s support for their participation in family and public life has converted them into policy evangelists. See here and here for outstanding examples of service user advocacy.
Palliative care service providers from resource challenged settings in India, Kenya, and a Rohingya refugee camp in Bangladesh testified after the service users. The refugee camp workers contrasted the generosity of private donors and tenacity of frontline providers with the support vacuum of governmental and inter-governmental agencies. This unsustainable situation is a microcosm of the challenges facing all societies experiencing ever greater burdens of chronic and non-communicable, as well as communicable diseases. Grabbing the brass ring entails persuading governments to provide public funding, require palliative care education, ensure adequate access to controlled medicines, and partner with providers already working in the field.
The global palliative care community can show member states the way forward through our own internal collaborations, practice, and ethos. We can model the way by including affected communities – patients, families, volunteers, and caregivers — as equal partners alongside clinical and policy professionals. The challenge is to give authentic “voice” ad-voc to those who receive and provide services. The Chatham House meeting was a terrific example of this inclusionary ethos. Patients and practitioners had the floor first, upending the usual protocols. The WHO DDG was called on to respond to them, rather than vice-versa.
On the CH briefing table were the topics of funding, leadership, and the ongoing challenge of addressing inequitable global access to opioid analgesics, especially in the fraught context of the WHO withdrawal of two key guidelines on balanced policy and prescribing. Speakers expressed frustration that the opioid crisis in the north was overshadowing and negatively affecting the opioid access crisis in the global south. Leading providers of palliative care in both India and Uganda, who have successfully fought for improved availability of oral morphine in their facilities, have testified to the fact that the oral morphine they have provided to tens of thousands of patients over the years is not diverted and abused in their institutions. In qualified hands, generic oral morphine has life-giving, and life-saving value. This provider testimony to non-diversion confirms the finding of the 2019 World Drug Report, which states that the vast majority of morphine seized by law enforcement authorities was illicitly manufactured, not diverted from the pharmaceutical supply chain. Once again, it is key to include the voices of patients and providers discussing their experience of safe morphine use for severe pain and breathlessness.
Funding Without philanthropic funding, hospices around the world are going under and reducing their capacity to serve patients. As the Chair of the Lancet Commission on the Value of Death, referring to the charity shops that underwrite most British hospices, said “No one would dream of funding cardiology and osteopathy by selling old clothes, so why are doing it with hospice and palliative care?” Dr. Anne Merriman, founder of Hospice Africa Uganda (HAU) the beacon of palliative care and morphine availability in Africa, was on late night BBC TV recently begging for a billionaire because HAU’s charitable funding has dried up, and the government has not stepped forward to pay the tab. Since Uganda, like many “developing” countries, sends its elites abroad for treatment at public expense, few policymakers are viscerally aware of the situation in government clinics and hospitals. Universal Health Coverage, properly initiated and established, and including the voices of both providers and patients, should fill the identified palliative care service gaps in all countries. This requires governments to engage with national palliative care associations whose members are already doing the work. Representatives of those associations will have to make the first move and grab the brass ring!
The absence of any participants from either the UK government, specifically DFID, or the UK Hospice movement troubled participants at the CH meeting, who identified the UK as the “birthplace” of the global hospice/palliative care movement and a potentially global leader for publicly funded palliative care. The philanthropically funded aid pot is shrinking and the responsibility for sustainability lies fair and square with national governments to design, fund, and implement UHC policies for populations that use, and do not yet use services. It’s up to palliative care patients, professional associations and policy advocates to help their governments grab the brass ring of UHC by convincing them a) that it’s doable, and b) that the social and financial returns on investment will far outweigh the initial costs of health system strengthening and workforce training.
Casa Mausi is a place of grace in Panama City, a large airy guesthouse surrounded by trees away from the fumes and bustle of downtown. Its temporary residents are cancer patients who lack social security coverage but who make the long trek to the capital for treatment. Once they get there though, they have nowhere to stay, to eat, or to receive basic support. Long bus rides back to their villages or towns between treatments are simply not feasible for those who are seriously ill and living on the edge, so until the advent of Casa Mausi, they made do sleeping on the streets or stairwells around the public Cancer Center.
Witnessing this reality, a young privileged Panamanian mother undergoing treatment for leukemia at a private hospital envisioned the guesthouse I was invited to visit after a regional meeting to launch the Lancet Report on Pain and Palliative Care. Carol, or “Mausi,” who was a devout Catholic, would ask the Lord “why me? Why are you putting me and my daughter through this agony?” The answer was revealed when her oncologists showed her the harsh reality of their patients who had nowhere to go between treatments. According to Karinthia, the director of Casa Mausi, “Mausi reflected on the fact that no matter how challenging her experience as a cancer patient was, she had resources and family support, whereas her fellow Panamanians from the countryside had absolutely nothing when they came to the city.”
The Foundation created after Mausi’s death is supported by wealthy individuals, corporate donors, hundreds of volunteers, and regular fundraising events such as the bingo marathon held every April. Although average age is 35-50, patients range in age from 18-93. There are 28 regular beds for men and women in separate dorms, and six ‘extra’ cots to accommodate overflow, often patients returning for checkups once their course of treatment is over.
With an annual budget of around 250K American dollars, the staff and volunteers do a lot of fundraising to keep the place open and the staff paid! Although all the board members are Roman Catholic, Casa Mausi serves patients of all faiths or no faiths. The only criteria are need, which assessed by a social worker, and the presence of a caregiver. As the population ages and confronts growing rates of cancer, there are plans to expand the house and staff.
I had the pleasure of meeting two residents, who we shall call Artemisia and Juan, in the pleasant garden gazebo. Both were returning for checkups and biding their time until later that day when the Casa Mausi van returned their fellow guests from treatment. When I asked Artemisia, from Chiriquí (in the far north of the country) where she would be staying if Casa Mausi didn’t exist, she shook her head in wonder and said “probably in the street.” Casa de Mausi is truly a corporal work of mercy in action!
Yesterday I was privileged to accompany Dr. Nisla Camaño Reyes, (Coordinadora Nacional de Cuidados Paliativos de la Caja de Seguro Social, and President of the Panama Palliative Care Association) and the “Equipo de Cuidados Paliativos del Hospital Rafael Estevez,” on four home visits in the region of Aguadulce, a three hour drive from Panama city. Nisla and I set out at 5am in an official car, as the palliative care program in Panama is supported by the Caja de Seguro Social (Social Security Administration).
The first visit was to Melquisedek, a six-year old child with Down’s Syndrome suffering from a rare leukemia. Dr. Roxabel Barcelo, and Rita Ortiz RN checked his symptoms and medications, while social worker Odilia Delgado chatted with Melquisedek’s mother, who is his primary caregiver. M doesn’t speak, but is clearly receptive to touch and energy of our presence. The house was in a humble rural neighborhood with potable water but no sewage disposal system. Blackwater runs in ditches around all the houses.
Our second patient was Rodrigo a 73 year old gentleman suffering from prostate cancer, cared for by his sister, Adela, an upbeat and joyful woman who brought us plates of sweet watermelon while the team examined her brother and chatted about his care and medications. Rodrigo’s pain was managed with Oxycodone and morphine, supplied by the CSS pharmacy. Adela explained that she gets terrific social support from her evangelical church, which comes and prays with her, plays music, and ensures her basic needs are met.
Our next patient was Armenia, an 83 year old lady with COPD and debilitating weakness, who had been overusing the emergency room at the local hospital in order to manage her frightening breathlessness. The team reviewed her oxygen and counseled her about pain and appetite. Her husband is her primary caregiver, but her son came appeared at one point during the visit to bring some his parents some food from his restaurant.
Our last patient was Graciela, a 67 year old lady suffering from advanced stomach cancer, whose primary caregiver was her daughter. Dr. Barcelo sees a lot of patients with advanced stomach cancer, which she attributes to modern Panamanian diets, which no consist of locally produced foods, but of imports that are often genetically modified and laden with sugar and salt.
The team assessed Graciela’s pain and symptoms, advised her to eat smaller amounts more often in order to avoid vomiting, and to stay hydrated. Her daughter, a supermarket manager, came home at lunchtime to learn how to insert a saline drip and keep her mother hydrated as necessary. It is extraordinary to witness the burden that falls on family caregivers of palliative patients, in terms of their energy, commitment, and skills. Essentially they become nurses’ aides, and indeed trainee nurses, administering meds, injections, and learning to how to move, change, and feed their loved ones, many of whom are completely dependent. They do this under difficult economic circumstances, often holding down full time jobs and looking after other family members, including small children. Without these caregivers, trained by palliative care teams such as the one I was privileged to accompany, they would be entirely abandoned, or left to die alone in hospital wards.
I am humbled by, and bow to, each member of extraordinary palliative care teams such as these. They go to work every day, for very little pay, to care for patients and their families dealing with serious illness and health related suffering. After seeing the morning’s patients, we repaired to a local restaurant, got to know each other a bit on a personal level, and enjoyed a delicious lunch with our drivers before Nisla and I headed back to Panama City to prepare for the Central American Launch of the Lancet Report on Pain, Palliative Care, and Universal Healthcare.