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!

Palliative Care: An Evolutionary Turn in Dark Times

The English word “palliative” derives from the Latin palliare, or “cloak”. Palliative care teams, manage the bio-psycho-social and spiritual suffering of patients and their families facing serious illness and end of life by “cloaking,” or alleviating it with evidence based care. The severe pain experienced by such patients is often a complex synergy of physical, emotional, spiritual, and social issues that few modern medical students who do not study palliative care are trained to address or treat.
Where palliative care is taught as part of the professional curriculum, it graduates palliative care teams that include specially trained doctors, nurses, pharmacists, social workers, and spiritual care advisors. They are trained to address these dimensions of severe pain, providing care beyond cure, as necessary. They take up the slack when doctors’ trained to treat  the disease rather than the patient, concede “there is no more we can do.” Palliative care is always the “more” that is available to patients and families.

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!