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.

Contigo

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.

IMG_8083

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.

IMG_8105.jpg

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!

fullsizeoutput_b3a.jpeg

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.

fullsizeoutput_b27

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!

 

 

Palliative care travelogue: Public health and good faith caring for low income seniors in Uruguay and Buenos Aires

Uruguay is a tiny country, population of just over 3.4 million, where seniors with limited means who suffer from chronic conditions can receive palliative care at home or in the public hospital. It has universal health coverage instituted by a left-leaning, human rights centered government that took office after the dictatorship was deposed. Interestingly, Dr. Gabriela Piriz’s multi-disciplinary team at Hospital Maciel (formerly Hospital de San José y La Caridad)  in the old section of Montevideo, is young, militantly secular, and non-denominational. In contrast to Uruguay’s universal coverage, only about 4% of those who need it receive palliative care under Argentina’s public health system, leaving an enormous eldercare and hospice gap barely touched by the faith based organisations I visited in Buenos Aires. According to ACLP President Dr. Tania Pastrana, 96% of people in Argentina die in pain, with treatable symptoms.  Argentina ranks 37th of all LAM countries in quality of death. Interestingly, Argentina is chairing the Open Ended Working Group on Ageing at the UN, and supports development of a convention to protect the rights of older persons.  I have insisted, during preliminary, exploratory meetings to discuss the need for such a binding instrument, that palliative care is an essential element of any such convention. 

The day after I arrived in Montevideo, I went out on housecalls with Dr. Piriz’ service, which supplies free medicines, medical devices, and clinical services to older persons living at home. The only element lacking was spiritual care, in which teams are not yet trained. Impressively, the service has managed to cut the palliative sedation rate of Uruguay to 6.1%, less than half the regional rate. Doctors can give palliative sedation only with patient and family consent in order to mitigate refractory symptoms that are causing unbearable suffering. The majority of terminal sedations in Uruguay are performed at home with family members present. Doctors don’t administer palliative sedation with the intention of causing death, but to relieve terminal agony when no other remedy is available. It is the mark of a well trained palliative care service that they can keep this intervention at bay for as long as possible.

New challenges for homecare teams serving poor neighbourhoods around Montevideo are the extreme weather that occasionally tears roofs off patients’ homes or makes muddy (unpaved) roads impassible.  Police actions related to drug market violence can also make it too dangerous for teams to enter the barrios and see patients in their homes. Sometimes they can only enter with armed escorts. Patients with limited family support and the means to pay, can access a system of private, assisted living residences. The Maciel is a last resort when there are no family caregivers and no money. 

In Buenos Aires, I visited two organisations serving seniors and the seriously ill with limited means. Both are faith based — one Jewish assisted living and one Catholic hospice — and both are funded by private donations, which are dropping precipitously in the ongoing economic crisis.  

Casa de Bondad is a hospice in the Manos Abiertos network, a charity that serves the poorest of the urban poor. This hospice’s work was inspired by the dying words of St. Alberto Hurtado, SJ., the Chilean saint cannonised in 2005, who prayed to imitate Jesus’ injunction to “do for the least of them,” as you do it for me (Mt. 25,40). Below is a photo of an old painting that hangs in Casa de Bondad depicting a band of Jesuits sheltering under the cloak of the Blessed Mother. IMG_6958The hospices, which operate on a shoestring in four Argentine cities today, are the fruit of a dream conceived over ten years ago by one Jesuit priest with a dedicated team that includes volunteer Executive Director, Ana Pannunzio, and Medical Director Dr. Sofia Bunge.

IMG_6957

“Serve everyone as Christ himself.”

Only six of the eight beds at Casa de Bondad were occupied, not because there is no demand for all of them (there is a long waiting list) but because the current level of donations won’t sustain the salary of the other nurses who would be needed to fill the extra shifts. 150 trained volunteers, two salaried physicians, and six shift nurses serve the fortunate few who make it through the door at any one time.  I met several volunteers and all six patients, five of whom were young adults, aged beyond their years by poverty, and preventable disease, but far from elderly.  All were terminal, beautifully cared for at the last, in a relatively non-institutional setting whose mission is to provide them with companionship and skilled nursing at their time of greatest vulnerability.  For more information about the hospice and to make a donation, see this link.

The other volunteer palliative care team I met in Buenos Aires worked at the Jewish assisted living home, LeDorVaDor (Hebrew: from generation to generation). LeDorVaDor was founded to serve low income Jewish seniors in Argentina, those whose adult children can no longer care for them, or who have nowhere else to go. Donors and wealthy patients, who are the minority, subsidise the care of those with no means to pay, ensuring that residents lack for nothing in this very high end facility.  A lifecourse approach, including Montessori for dementia patients, keeps residents active and engaged for as long as possible. The library was well stocked, the  cafe open, the kinesiology program busy, and the high staff patient ratio evident. The palliative care team, employed by the hospital in their different clinical capacities, all serve as volunteers, providing an extra layer of care for patients whose condition offers no further hope of treatment.  

IMG_3721 (1)

The author with a patient and palliative care team at LeDorVaDor

Dr. Wanda Gisbert, who trained in palliative care at the Hospital Tornú, originally Argentina’s only public TB hospital, founded the team, recruited and trained interested colleagues, and introduced the discipline to an uninterested administration at Hogar LeDorVaDor. Her team is gaining recognition as colleagues see how palliative care not only improves their patient outcomes, but complements, rather than competes with, their own clinical specialties. LeDorVaDor and Casa de Bondad both provide great models of leadership and service for low income seniors in the city of Buenos Aires. 

I met some wonderful palliative care clinicians and geriatric specialists who were attending the teaching and advocacy workshops co-sponsored by IAHPC and the ALCP in Argentina and Uruguay. All were committed clinicians caring for fragile elderly populations under very challenging circumstances, and were frustrated by the bureaucracy that interferes with their ability to do their job as well as possible.  The need for expert elder care is growing fast, and trained staff and volunteers so few, but so valiant and big hearted, both in the public and private sectors of both countries.

IMG_3720

The volunteer palliative care team at LaDorVaDor, Dr. Gisbert far right

The ITES (Iniciativa Transformando El Sistema) workshop, spearheaded by Dr. Roberto Wenk of FEMEBA, and attended by physicians from almost all regions of the country, represented an excellent step towards the further propagation of person centered palliative care in Argentina.  Learning how to teach palliative care to medical students, as these professionals were doing, is key to expanding professional capacity to bring older persons expert care at the end of life.

Fingering in the wounds

I went on home visits to very poor neighborhoods in Montevideo last week with the excellent publicly funded palliative care teams at Hospital Maciel, originally a charity hospital founded by an order of sisters in the eighteenth century.

Interestingly, the otherwise state of the art palliative care teams did not do spiritual care, or do spiritual assessments when doing patient intake.  The professionals I asked about that responded that they provide psychological care, if necessary.  Courses in psycho-spiritual elements of palliative care are taught by psychologists.

Uruguay is a very secular country, an anomoly in Latin America, with a only minority of citizens identifying as Catholic or regular churchgoers.  Yet the country is well off, and very progressive in many ways, also an anomoly in that its national health service includes home based palliative care services.  The people are extremely friendly, and greet one another, even strangers like myself, with a kiss, much like the early Christians! It made me think, as I often do when I reflect on my secular friends and family members who wouldn’t be caught dead in a church, of theologian Dietrich Bonhoeffer’s “religionless Christianity,” a concept he did not have a chance to develop before he was executed by the Nazis in the last days of the Third Reich.

Although he was a Lutheran pastor, Bonhoeffer was very critical of the church and understood why people were drifting away from an institution that offered largely “cheap grace…grace without discipleship, grace without the Cross.” (Cost of Discipleship)  As Bonhoeffer said, “We are moving towards a completely religionless time; people as they are now simply cannot be religious anymore.” (Letters and Papers from Prison) The concept of “religionless Christianity,” on the other hand, demands costly grace of disciples, and obedience to Jesus’ call to radically follow him. 

This morning’s mass readings for the Second Sunday of Easter include Jesus’ famous words to the disciple Thomas, the one who said he would not believe until he put his fingers in the wounds made by the nails of the Crucifixion.  Jesus tells him straight up to put his hands in the wounds, and feel for himself.  Although John’s Gospel does not specify that Thomas actually did that, it’s Jesus’ instruction in an era of religionless Christianity that interests me, because that is exactly what today’s doubters, today’s Thomases should do.  Feel for themselves the wounded body of Christ.

That wounded body is the forgotten ones — the people who are hungry, humiliated, diminished, marginalised, mentally ill, and dying. The doubters should put their hands in that body, literally get their hands dirty with the work of serving, like Dorothy Day, like the countless anonymous Christians and non-Christians who serve their helpless fellow human beings all over the world. Whether or not they interpret it that way, they are tending to the wounded body of God.  I think that is what Bonhoeffer was getting it.

I particularly love how John tells us that when Jesus appeared in his resurrected body in the middle of the huddled and frightened post-Crucifixion disciples, “Jesus breathed on them and said “receive the Holy Spirit.”  Classical Greek renders that breath as πνεῦμα or pneuma. The Holy Spirit came through his breath.  I remembered to do the Tibetan Buddhist practice of tonglen at a patient’s house the other day in response to the dense suffering that surrounded this teenager’s dying, and what a great practice tonglen is in such circumstances, when the pain brought on by the despair of losing a child is unbearable.  Being present to that despair allows us to breathe in the suffering as we inhale, and send out the holy spirit in our outbreath, our pneuma, to serve as a container for the pain, when the one who is suffering cannot.

Providing spiritual care as an integral component of palliative care can respect the secularity of the patient and family. It does not have to be religious or even “spiritual,” but can simply be compassionate, intentional presence  — being with the patient and family in their distress. According to one consensus definition, “Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.” Attending to that need for meaning and purpose fills a vacuum that is otherwise filled with great suffering, suffering that cannot be assuaged by any amount of excellent clinical care.

I have been praying daily for the young man who is dying of an aggressive brain tumor, who is bedridden and whose friends don’t visit any more, and for his mother, whose grief we we were able to accompany for a brief time last week. Thank God for the palliative care teams — the religionless Christians — who could visit their humble home at no cost to the family, who could at least alleviate the young man’s physical pain and by their very attendance on him, let his family know they are not abandoned in their hour of greatest need.

IMG_6814

Palliative care as transformative practice: dedicated to my hospice/palliative care friends and colleagues around the world

Palliative care transforms everyone who participates in it — who gives and receives it — from the inside out.  It also has the power to transform systems from the inside out.  Palliative care practitioners need public recognition and funding to accomplish these transformations for the benefit of patients, families, and health systems around the world.  Palliative care ethics cut against the grain of profit-oriented systems that reward individualistic, rather than socially embedded, conceptions of health and wellbeing.

Palliative care values people as human beings, as ends in themselves. Its ethical compass overrides the dominant system priorities, being pointed at the moral imperative of alleviating vulnerability and distress.

By identifying and attending to pain along multiple dimensions — to “total pain” — palliative care affirms the inherent value of the person.  Its concern with suffering amounts to a declaration that our common mortality makes us all, no matter how ill or debilitated, equal. In that sense, palliative care is profoundly democratic and non-elitist.  That in itself is transformative.

The qualities and virtues palliative care builds in practitioners at the bedside (the microcosm) have the power to shift world views in the macrocosm. It is not overstating the case to say that the development of palliative care represents the beginning of a paradigm shift. Unlike their patients, palliative care practitioners and advocates have voice and influence in the public world, and are using it to call for the discipline’s integration into national and global health systems as a matter of justice.

Palliative care advocates such as myself and my colleagues who work at the international level, remind countries of their human rights obligation to institutionalise palliative care as part of the right to the highest attainable standard of health. This requires that they develop policies and allocate funds to support it.

The strategy of presenting palliative care as a human right, rather than as an option, allows policymakers to see it as a universal need rather than a political football. Populations all over the world are rapidly ageing, the prevalence of non-communicable diseases such as cancer, diabetes, and heart conditions, is increasing. Funders and policymakers realise that they and their families will also need palliative care in the not so distant future. Universally recognisable needs rarely cause political fights.

Palliative care practice is politically subversive, although not in the conventional sense of political campaigns that cause harm by seeking power or shaming opponents. Its virtues and ethics are deeply political in the classical sense though, a sense that has been largely forgotten, but is immanent in our political DNA. These virtues are expressed in the friendship, courage, and honesty (truth-telling) that exemplify best practice palliative care.

When the ancient citizenship virtues are practiced in the modern context of the private realm, at the beside, palliative care communities are actually reconstructing the genetic material of the public sphere, much as stem cells do. They are rebuilding damaged ethical tissue from the inside out, causing the dominant system or politeia — body politic — to shed its old skins, and reorient itself toward the common, rather than the private good.

Snake_skin_coil

Palliative care and hospice practice inspires learning along spiritual, as well as clinical and psycho-social dimensions. Practitioners’  proximity to death and embrace of vulnerability, advances the emotional intelligence of society as a whole.  We have the privilege of accompanying people who are journeying between the worlds, our ‘patients.’ They and their personal caregivers have so much to teach us about what is really important during their final months and days.

Those teachings usually concern the values of surrender and open-heartedness, as well as struggle. Surrender, paradoxically, opens human consciousness to truths and realities that are not otherwise apparent when we are immersed in the more “worldly” dimensions of achievement and commerce.

Bedside practice teaches us to slow down, listen, and be respectful of both the “undignified” and the unfathomable.  What we learn there informs our family and public lives. It creates a ‘meme’ that can replicate effectively, transforming other key domains of our worlds.

May the vision of universal palliative care can become a reality!