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,
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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.

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Palliative Care in Peru, El Salvador, and Guatemala — The Medicine of the Poor

I just returned to the US from an all too brief work trip to Peru, El Salvador, and Guatemala. I had the tremendous privilege of accompanying palliative care physicians, nurses, and volunteers who provide services to the poorest of the poor in their countries, patients would otherwise die terribly, in squalid conditions with no pain relief and little family support. See the recent Lancet Commission on Palliative Care Report for the unmet global need and policy recommendations for an Essential Palliative Care Package.
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My visits to the public hospitals and faith based hospices triggered memories of the Latin American liberation theology that had so influenced me three decades ago. It dawned on me that palliative care, like the gospels, is the medicine of the poor. Providing palliative care in resource challenged countries, demonstrates a “preferential option for the poor.” It serves those who are both poor in material wealth, and those who are poor in spirit. It is all that’s left to people who are suffering and in severe physical, social, existential and spiritual pain when curative options have run out, or were never an option. It is sabbath healing that defies the biomedical law of cure at any cost.

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“It is the poor who tell us what the “polis,” what the city is”,
Speech, Monsignor Romero, Louvain, 1980.

The polis (Etym Greek) is the city, or the political community. The poor tell us that the polis must include palliative care as an essential public service, a service that should be integrated into government funded Universal Health Coverage. Providing it publicly, rather than privately through charity to a tiny minority, will save many who are already poor from falling deeper into the medical poverty trap from out-of-pocket expenses for costly, futile treatments. Publicly subsidised, low cost, community based palliative care could save governments millions of dollars in medicines, medical devices, and hospital costs.

Hospital Divina Providencia — San Salvador
“The Church exists to act in solidarity with the hopes and with the joys, with the anxieties and with the sorrows, of men and women,” said Monsignor Romero. The words “Palliative care could be substituted for “The Church” in this sentence. Monsignor Romero is resurrected in the work of the Hospital la Divina Providencia, in whose chapel he was assassinated by paramilitary forces in 1981 while celebrating mass. Divina Providencia as it is known, was founded by Carmelite nuns, and now runs under the leadership of Hermana Maria Julia.IMG_9399

Divina Providencia is the only hospice in San Salvador that provides palliative care at no charge to indigent patients and families from all over the country. One of the things that touched me deeply was the patience (etym — suffering) and endurance of family members who wait day in day out by the bedsides of their loved ones, sleeping beside them in the curtained cubicles. The caregivers have come by bus or taxi at great expense from far away villages, to accompany their loved ones in San Salvador. Mothers leave younger children behind in the care of an older sibling, often in rural zones subject to ongoing violence, to care for a hospitalised brother or husband. Already destitute, the lucky ones are supported financially by local evangelical churches, charities, or the municipalities of their towns of origin.

“Palliative care allows us to provide our patients with quality of life to the end. We support the family members who suffer alongside the patient. We suffer and weep with them. We know that it is not an easy task, but God gives us the grace and strength to continue.”
Madre Maria Julio, Director General Divina Providencia

Hospicio Fondación Ammar Ayudando
The other hospice I visited in El Salvador was Fondación Ammar Ayudando, for children with life-limiting illnesses. It offers high quality clinical services, medications, food, and a comfortable room to indigent patients and families free of charge, in order to provide them with the most dignified death possible. Ammar Ayudando’s founder, architect Myriam Ramos, aims to provide loving, compassionate, effective, and professional care for the patients she finds at the public hospitals who otherwise would be sent home, told the staff could do nothing more. Given the lack of preventive and curative care in the public system, which according to colleagues who work on the ground, is “collapsing,” palliative care is indeed the only option for patients with no access to prevention, cure, or rehabilitation. Myriam’s work is entirely voluntary and based on donations. She gets more from her patients than she gives though, saying,
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“God created humans so miraculously that the spiritual core, which normally does not show up until adolescence, emerges prematurely in dying children, to compensate for the loss of physical capacity. Dying children are old, wise souls. They are much wiser than healthy, over-protected children.”

When I asked Myriam how she gets the funds to run the hospice, she raises her eyes to indicate constant (and productive) “knocking on Heaven’s Door.” Government funds come only indirectly, such as a check she received recently from a businessman who owed back taxes. The judge directed he pay Ammar Ayudando the (hefty!) penalty.

Hospital de Niños Benjamin Bloom is the only pediatric referral hospital in El Salvador that provides free palliative care to indigent children and families, in a hospital, rather than social model, setting. Founded in 2010 by Dr. Rolando Arturo Larín, the palliative care service is also blessed with hundreds of passionate volunteers of all ages and education levels. Children whose palliative care needs are met often live much longer than adults. Their lives, and those of their families, benefit immeasurably from palliative care services,
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The ideology of biomedicine
The ideology of modern biomedicine, which influences global health ideology, focuses on prevention, treatment, and cure of disease in order to ensure maximum healthy participation in the market. Commercialised biomedicine supports ever growing markets for medical devices and pharmaceutical products, all of which are available at a cost, either to the individual consumer of healthcare, or to governments that cover treatment of chronic and communicable diseases. If they do not, only patients with access to funds can purchase healthcare; those without cannot. Public funds are rarely available for palliative care patients, since they have little to offer either the market or the government (through taxes).

Transactional market logic undercuts arguments to support patients whose productivity is low or non-existent, with public funds. Faith logic, however, which is based on the principles of gift and mercy, supports patients suffering from life-limiting illness through the donation of resources. These services are a drop in the bucket of need, though, resulting in a “suffering gap” in countries where the poor have no access to private healthcare markets and public health systems are weak or collapsing. Faith-based and charity funded organisations have taken it upon themselves to provide hospice and palliative care services to patients outside, or on the margins of healthcare systems. Their non-marketability fits the rationality of the Kingdom, which invites all, particularly the poor, the halt, and the lame — those who cannot reciprocate with a party invitation of their own — to enter and receive care.

Palliative care is the medicine of the poor because those with few material resources have little or no access to functioning healthcare systems that allow them to prevent, diagnose, or treat the illnesses that end up taking their lives, at much younger ages than their counterparts in the wealthy countries. Charity funded palliative care is the medicine of the poor that offers a relatively pain free and dignified death, one that brings peace to patients, families, and providers. In resource rich countries, where the palliative care’s team approach offers relief for psycho-social and spiritual, as well as physical pain, it is the medicine of the poor in spirit. As the costs of medicines and treatments for life limiting illnesses cripple both individual households, and public health systems, it will be key, as the Lancet Commission Report emphasises, to ensure the inclusion of palliative care services under Universal Health Coverage.The target population includes palliative patients and their caregivers.

Universal Health Coverage takes a person-centered public health perspective. The optic is also to maximise productivity, but from the perspective of the public, rather than the private, good — the wellbeing of the population, rather than the wellbeing of individuals or elites. Integrating basic palliative care services into the public health system reduces costs (of hospitalisations and purchase of futile medical device and pharmaceutical consumption), and reduces stress-based co-morbidities (such as heart disease and depression) in caregivers. Governments that have an interest in reducing red ink and increasing investment for the public good, will fund palliative care, demonstrating financial prudence, civic virtue, leadership, courage, and transparency. These governments will respond to advocacy that serves the needs of their populations who are beyond the reach of cure. The faith based organisations, which have been doing the work for decades, embodying the classical political virtues of courage, friendship, honesty and magnanimity, can show them the way. IMG_9389

Publicly provided long term and palliative care for older persons in Montevideo

It is spring in Uruguay, and the air at Hospital Luis Piñeyro Del Campo, the only publicly funded home for older persons in Montevideo, is heavy with the scent of jacaranda trees planted throughout the spacious campus. Luis Piñeyro del Campo (1853-1909), for whom the home was named, was a constitutional lawyer, soldier, and founding father of the Uruguayan state. Educated by Jesuits, he was a key leader of the la Comisión Nacional de Caridad y Beneficencia Pública (National Charity and Public Welfare Commission). The Hospital for older persons we visited the other day is testimony to his prioritisation of the most vulnerable and the poor in Uruguayan society. 

I was in Uruguay for the World Health Organisation Global Conference on Non-Communicable Diseases, to advocate for the inclusion of palliative care in oral interventions and policy documents where appropriate, and to support our national partners in the Ministry of Health and the Uruguay Palliative Care Association. The President, Dr. Laura Ramos, a psychiatrist whose mission is to develop spiritual care for Uruguayans facing life-limiting illness,  arranged a visit for us to what Montevideans fondly call “Piñyero de Campo.”

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Left to right — Dra. Laura Ramos, the author, Dra Sara Levy, and Dra Alejanda Ferarri

Laura’s colleague, geriatrician and palliative care Dr. Sara Levi, showed us around the campus, which used to be an asylum that was home to more than 1000 souls. It now has 216 beds, organised into five pavilions, depending on level of disability (including severe dementia) and care needs. Residents are mostly sixty-five and older, must be low-income, and with a diagnosis requiring residential care. The majority are “elder orphans,” with no family members to care for them at home. The exception are those who come for the daycare program while their family members work. 

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We arrived just as lunch was ending and saw 45 residents in the “high dependence” ward, all in wheelchairs, some tied so they wouldn’t fall out, many with a sugary drinks and a banana in front of them. Some responded to greetings, but most were isolated in their own worlds.  Although it was as grim as the “memory care” wards in even the highest end “retirement homes” I have visited, the facility was airy and clean, and the staff seemed attentive and kind. Palliative patients are scattered throughout the pavilions until a dedicated ward is finished, hopefully early next year. 

IMG_8988We stopped by to check on Sarah, a103 year old patient in her last days, who was sleeping in the corner of one of the salas, or wards reserved for residents with mild disabilities. Doctor Sara told us how patients used to die here in terrible suffering until she was able to introduce palliative care in 2001. She recounts how when she first brought an ampoule of morphine in to the wards, she was greeted with horrified stares. Now the staff are trained to use morphine for patients with severe pain, and have overcome their initial opioidphobia.

IMG_8982Because the government of Uruguay recognises the right to healthcare, it provides its citizens with a basic package, which includes palliative care and controlled medicines, free of charge. A parallel system of private insurance offers a more comprehensive menu for those who can pay.  I have been privileged to go on home visits with doctors who provide both, and to visit the inpatient wards at the private hospitals, which provide excellent care to patients who cannot be managed at home.

IMG_8985Uruguay was one of the first countries to ratify the Inter-American Convention on Protecting the Rights of Older Persons, which recognises the government’s obligation to respect, protect and fulfill all the basic social, cultural, economic, and political rights of older persons, including the right to palliative care.  UN member states, through the Open Ended Working Group on Aging, have been debating whether or not to begin drafting a binding convention, similar to that protecting the rights of children, persons with disabilities, women, and indigenous groups, and will consider palliative and long term care in July 2018.  I hope Sara Levi will come from Montevideo to speak about those in her care at Piñyero del Campo.

Luis Piñyero del Campo would no doubt have approved of palliative care, a medical specialty that developed during the century after his death. His life and the hospital named for him, resonates with Pope Francis’ description of palliative care “an expression of the truly human attitude of taking care of one another, especially of those who suffer. It is a testimony that the human person is always precious, even if marked by illness and old age.”

Nursing Homes Provide Palliative Care for Older Persons in Bogotá

Although the dominant culture in Colombia traditionally values familial care for dependent elders, that culture is being eroded by the modern imperative of small families where both parents work and also care for small children. Care is becoming increasingly professionalised, subsidized through an agglomeration of public and private entities, from insurance companies to faith based organisations.

I was privileged to visit a couple of these nursing homes when I was in Bogotá for a palliative care advocacy workshop hosted by the International Association for Hospice and Palliative Care and the two Colombian national palliative care organisations, ASOCUPAC and ACCP,  Asociación Cuidados Paliativos de Colombia.

Dra Maria Lucia Samudio, a palliative care physician who specialises in geriatrics, was my expert guide around the two nursing homes.

Both Dra. Maria Lucia, and Dra Mercedes Franco, a psychologist located in Cáli, who founded a palliative care foundation that works with the most marginalised populations, are involved with the Colombia Compassionate Communities, Todos Contigo. Declaración de Medellín.

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Representatives of these Compassionate Communities can participate in the Agenda 2030 High Level Political Forum in 2018, which will consider Goal #11, among others, concerning sustainable cities. Since the “Todos Contigo” project includes the provision of community based palliative care, which will be a novelty for the High Level Political Forum, it will be great to hear the Colombian colleagues present at the UN next year.

At the two nursing homes we visited — one of which was state subsidised, the other run by a lay Catholic organisation and funded by donations, the staff were welcoming, the patients appeared to receive meticulous attention, and everything was clean. Both facilities, like most nursing homes, are struggling to make ends meet, sometimes staff don’t get paid on time, and there is strong competition for scarce resources. They still maintained an atmosphere of loving, patient centered care, though. Families were visibly welcome, providing care and attention to relatives and friends.

According to my companion, Colombia is considering a law similar to Costa Rica’s Ley de Cuidadoras, which pays caregivers a basic income. Of course, this is key to achieving several of the Agenda 2030 Goals, including #4 Quality Education, and #5, gender empowerment.

Since the chronic care facility is located in a beautiful historic part of Bogotá, none of its essential features can be remodeled.

IMG_8078.jpgWhile it can be a tedious and expensive proposition to maintain an old building, there are some benefits, such as the sunroom, where patients and families can come and enjoy some daylight and socialisation.

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The gorgeous old chapel is the only part of the interior that has not been remodelled. It contains C17 paintings of the Annunciation and St.Catherine of Sienna (patron saint of the sick), which hang under the original latilla and plaster ceiling.

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The second facility we visited was only for older adults with palliative care needs.  Of 26 patients, 23 had dementia diagnoses. When operating at full strength a few years ago, they had around double the number of older adults, and also had children, so it was a multi-generational care home.  The children and abuelos together painted the mural at the top of this posts, on the occasion of the first World Hospice and Palliative Care Day in 2005.

The bedrooms are beautifully kept, and as homelike as possible with keepsakes in every one for a family like atmosphere.

IMG_8096I met Señor L. in the dining room, after all the “abuelos” as the staff called them, had lunched. Not a dementia patient himself, he had lost his wife to cancer and dementia a few months previously.  Their family photo, hung with a rosary, is on the wall of his room, which used to be theirs.

The topic of palliative care for older persons will be on the agenda of the Open Ended Working Group on Ageing next year at the United Nations, and IAHPC welcomes all palliative care team providers to submit their stories, photos, and videos (with permission of the elders of course) for a special series of articles on Ehospice focusing on palliative care for older persons.  We are beginning to gather a body of evidence from all our partners in many countries regarding the state of palliative and long term care for older persons. We are planning a campaign to promote this very exciting and timely topic at the Open Ended Working Group in July 2018, including with side events, expert panels, and testimony of civil society providers of palliative care for older persons. We invite you to join us and submit your stories!

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Pediatric palliative care in Bogotá — Madonna & Angel

Today I met an angel. His name was Ignacio (name changed for privacy). He lives in a poor barrio in Bogotá with his very young mother (Madonna) and father, whose work pays for the insurance coverage that allowed our palliative care team to visit Ignacio and offer him and his family the best care possible.

(All photos used with permission.)IMG_8117Madonna sits with Ignacio, who will die within the month, on her lap. He was born with a congenital heart problem, and without the morphine he is receiving daily, would have died sooner, in respiratory distress. Many babies do not survive gestation.

Our homecare team consisted of Dr. J, Nurse H, and Dr. E, the Psychologist, who also has a diploma in palliative care.

After taking Ignacio’s vital signs and letting him play with her entrancing stethoscope, Dr. J asked Madonna about his symptoms, and learned his quality of life had improved since the last visit. She also fielded a hopeful question about a heart transplant, saying she would put Madonna in touch with the pediatric cardiologist. (She privately told later me that a heart transplant was impossible, for clinical, ethical reasons she could not go into during the visit.) Their medical duties in the house done, Dr. J and Nurse H stepped out and left Dr. E to give her counseling session, asking if I wanted to stay, which I did.  I also asked Madonna’s permission to stay.

Dr. E gently probed her state of mind, giving Madonna the space to say what she needed to say about how it feels to have a baby she knew could die at any moment, yet who seems to be doing better. The rational words failed her, and the tears came. She explained them saying she can’t stop wondering why God should punish her like this. Going over and over what she had done wrong. Dr. E heard her out and then gently told her that God was not punishing her, that he loved her, and was with her in this suffering. (Her theology was excellent!) 

She then practically paraphrased the Buddha’s story about Kisa Guatami the woman who had lost her son, saying that as mothers we never know when we will lose our children — it could be sooner, rather than later, but it may happen at some point. If it happens, tragically in our lifetimes, the death of a child is never the action of a punishing God. Gradually Dr. E calmed Madonna down, as Ignacio played on her lap with the handles of a tiny toy purse, seeming for all the world like a normal six-month old, drooping and eventually dropping off as he felt his mom relax. I told her he was an angel who was visiting her for a while, and was rewarded with a radiant smile.  Dr. E completed the image by saying he was an angel who would always be with her, whenever she thought about him, and even when she wasn’t thinking about him!

Palliative care and access to controlled medicines is excellent in Bogotá, and in some (mainly) urban areas of Colombia. For more information, see the Latin American Palliative Care Atlas. The discipline is developing slowly, and more new cohorts of medical students are receiving palliative care training as part of their education.

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Being Fully Alive at the End of Life

 

Today is the Feast Day of St. Ireneus, whose most famous statement was, ‘the Glory of God is the human being fully alive.”  How does this relate to End of Life (EOL) Care? Is a fully alive human being one who stays alive for as long as possible, extending bodily life indefinitely with chemicals, and machines, tubes hooked up to every orifice? I think not. Fully alive means attending to the life of the spirit as well as the body, and as St. Augustine said in sermon 127, “If so much care and labor then is spent on gaining a little additional length of life, how ought we to strive after life eternal?” 

As populations age all over the world, and people live longer with more chronic conditions such as heart disease, cancer, diabetes, stroke, etc. churches face the wonderful challenge of reminding parishioners that the life of the spirit can be cultivated when a person is diagnosed with a life limiting illness, and that palliative care must always include spiritual care, or it is not truly palliative care. The root word of “palliative” is “pallium”, which denotes the wool cloak the Pope places on the shoulders of a bishop to remind him to care for his sheep. The Pallium Niche in the vault of St. Peter’s Basilica in Rome contains the wool woven by nuns from the sheep raised at Vatican farms.Conf-Pallium-cm 

Spiritual distress toward the end of life is often profound, both for believers and non-believers, and clinicians need to learn to recognise it so that they can bring in a spiritual care professional or member of the clergy, if requested, to counsel patients and caregivers when the end is near.

A newly published study in the Journal of Palliative Medicine showed that clergy had “poor knowledge of EOL care, and that 75% desired more EOL training…Clergy described ambivalence about, and a passive approach to, counseling congregants about decision making despite having defined beliefs regarding EOL care.”  The study concluded that “poor knowledge of EOL care,” and I would add of the teachings of the church re palliative care, “may lead clergy to passively enable congregants with serious illness to pursue potentially nonbeneficial treatments that are associated with increased suffering.”

The good news is that focused education by trained practitioners can overcome ambivalence, passivity, and poor knowledge of EOL care. The bad news is that pursuing non-beneficial treatments exacerbates the physical, socio-economic, and spiritual distress of patients and families. Instructing doctors and nurses to “do everything possible” to keep a patient alive runs counter to the Catechism of the Catholic Church, which teaches that “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of “over-zealous” treatment.”  (2278)

The key words are “non-beneficial, burdensome, and disproportionate to the expected outcome.” The family, patient, and palliative care team, including the spiritual care provider, need to know how to unpack what those terms mean for that particular patient and family, preferably before a crisis, not during one, when people are in the rough waves and chaos of active dying.  

Human beings nearing death can also, paradoxically, be fully alive, and as many hospice doctors, nurses, volunteers, and caregivers who have attended the dying can attest, they are often at their most luminous and alive when supported by good palliative care, which includes pain relief as well as confident spiritual counseling.  Happy Feast Day!