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.

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“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.  

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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.

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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.