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8.primary Palliative Care in Southern Brazil The Legacy of Cicely Saunders
8.primary Palliative Care in Southern Brazil The Legacy of Cicely Saunders
8.primary Palliative Care in Southern Brazil The Legacy of Cicely Saunders
editorial2019
PCR0010.1177/1178224219825874Palliative Care: Research and TreatmentSR Corrêa, C Mazuko
DOI: 10.1177/
https://doi.org/10.1177/1178224219825874
1178224219825874
https://doi.org/10.1177/1178224219825874
As her undergraduate medical studies drew to a needs of local people, often over longer periods Correspondence to:
Santiago R. Corrêa
close, Cicely Saunders, whose centenary is being than the terminal care focus of earlier years. School of Interdisciplinary
celebrated in 2018, was moved to write her first Studies, University of
Glasgow, Dumfries, UK.
article and to submit it for consideration to the St Our examples here were compiled in the period Secretaria de Município
Thomas’s Hospital Gazette. Published in 1958, it January 2015 to February 2017. The patients da Saúde de Rio Grande,
Coordenação da Estratégia
proved to be a remarkably complete statement described and their families gave us permission to Saúde da Família. Street:
about the issue of terminal care in Britain at that share their stories with a wider audience. Each Marechal Floriano Peixoto
5, Rio Grande, Rio Grande
time, and a manifesto for what might be done in patient was cared for within the project known as do Sul, Brasil 96200-010
the future.1 Estar ao Seu Lado – Cuidados Paliativos na Atenção santiagorcorrea@yahoo.
com.br
Primária (We Are by Your Side – Primary Palliative
Santiago R. Corrêa
The article outlines the circumstances of four Care).3 Each was identified using the Supportive School of Interdisciplinary
cancer patients with advanced disease. We are and Palliative Care Indicators Tool (SPICT),4 to Studies, University of
Glasgow, Dumfries, UK
drawn into the worlds of two men and two select people who might benefit from palliative
Carla Mazuko
women, each dying prematurely from cancer, care interventions. Once identified, each patient Projeto Estar ao Seu
each seeking relief from symptoms and each in was offered a programme involving weekly pallia- Lado- Cuidados Paliativos
na Atenção Primária.
need of reassurance, help for their families and tive care outpatient clinics, support for carers and Estratégia Saúde da
strength in the face of death. Not only does it home visits, sometimes in emergencies. Fictitious Família. Secretaria de
Município da Saúde de Rio
describe the prevailing issues and problems of the names have been used in each case and other Grande.
day, it also became a roadmap for future guid- details changed where necessary, to preserve David Clark
School of Interdisciplinary
ance. Condensed into its pages is the entire range anonymity. Studies, University of
of questions with which the subsequent field of Glasgow, Dumfries, UK
palliative care would have to grapple. It was
something that brought to attention the plight of Antonio and Maria
terminally ill people in Britain at that time, giving Antonio (84 years) and Maria (83 years) were a
voice to their suffering and serving as a stimulus couple living in a simple house, with good sani-
for change.2 tary conditions. Retired with a small pension,
they had five adult children, three of whom were
Here we pay tribute to the original Cicely significantly involved in their care. Their rela-
Saunders article that first appeared 60 years ago. tively good economic situation allowed them to
Inspired by it, we share some examples, not from employ outside caregivers.
London but from the city of Rio Grande in
Southern Brazil. We also explore the complexity Antonio had Chronic Obstructive Pulmonary
of issues and problems still occurring in the face Disease (COPD at level 3-4). Crises of anxiety,
of serious illness and impending death and how with bouts of crying and the worsening of his
they might be approached. dyspnoea, were exacerbated by family conflicts in
which two of his daughters refused to see him.
But whereas the original paper focussed on the These persisted throughout the last year of his
hospital as the site of main interest, our reflec- life. One very specific challenge resulted from the
tions relate to the primary care setting. We show pressure he came under from his paid carer who
how a community health service with a special sought to impose her own religious beliefs upon
programme of palliative care can respond to the him. He died at the end of 2015 after a year of
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Palliative Care: Research and Treatment 00(0)
progression of his respiratory disease, worsening and general aspect seemed carelessly organised
frailty and a loss of independence. and not always clean. It reflected Iracema’s view
of herself. She had four children and many family
His wife Maria went into rapid cognitive decline conflicts and social problems related to them; her
and was diagnosed with Alzheimer’s disease, daughters were in disagreement over how best she
which was probably the cause of her under-lying should be cared for and she had problems with
psychological problems when first seen by the her son, who lived with her.
team in 2015. She became totally dependent on
others for her care and was confined to bed. Maria Iracema had cancer of the cervix and initial assess-
had problems with her formal caregivers and her ments in early 2015 showed increasing levels of
family issues carried on through 2017. Her cogni- pain and the need for strong opioids. She was
tive decline did not allow a proper evaluation of receiving health insurance benefit related to her
her spiritual concerns. She continues to be sup- disease. Radiotherapy reduced her pain. But she
ported by Estar ao Seu Lado. then developed a fistula of the bladder–vagina.
Her life became one of intense suffering. Although
her pain came under control, she developed uri-
Carlos nary incontinence and recorded the highest pos-
Carlos (64 years) was diagnosed with a kidney sible score (of 10) on the Edmonton Symptom
cancer in 2015. A Uruguayan, he was living with Assessment Scale.5 She could only obtain free
a new partner after the death of his first wife, in a diapers from government sources on an intermit-
comfortable home. As a foreigner however, and tent basis. Buying them herself took away valua-
to his personal detriment, he encountered ble money which she could no longer spend on
extended problems relating to health insurance. food.
He had two sons and a difficult relationship with
one of them. Poor access to medicines and specialist appoint-
ments, and the shame occasioned by the smell of
During the first year of his illness, he under-went urine combined to heighten Iracema’s psycho-
surgery and was subsequently prescribed moder- logical suffering and as a result, she abandoned
ately strong opioids. He took his medication on her religious practices. During part of 2016, her
an irregular basis, showed a strong resistance to condition was more stable, but by the end of the
accept the disease and fought against his lost year, she presented with metastases in the abdo-
capacity to work and to be independent. Although men, damage to her kidneys and urinary obstruc-
he started to receive financial benefits in the final tion. By the end of 2017, she was awaiting surgery,
period of his illness, his other struggles continued but during that year she had an increase in her
and were present up to his death. pain, despite higher doses of stronger opioids,
and with constipation also resulting. Her multiple
His problems were a complex web of family con- problems continue, perhaps with some small
flicts, bureaucratic and financial barriers to obtain- improvement.
ing strong opioids and obstacles to accessing
appropriate medical assessment and treatment.
His increasing pain required opioid rotation, using Yara and João
morphine and methadone. Yet at the end of his Yara (58 years) and João (65 years) were siblings.
life, he showed some acceptance of his condition She had a son and a daughter and lived with the
and declared: ‘Now I finally understand what is son until he moved away to another city. At this
happening’. When Carlos had an episode of delir- point, she was under the care of the team as a
ium, the family, despite the many meetings they result of her brother, who was also being looked
had with the team and numerous attempts to plan after with Estar ao Seu Lado. Then she went to
his care in advance, asked for him to be admitted live with her daughter and was out of catchment
to hospital, which was where he died, in 2016. for the team. Until that time, Yara was very care-
ful with her approach to life and to her illness. But
she had been unable to accept the move of her
Iracema son and became depressed. Over time, she had
Iracema (54 years) lived in a house in an impover- financial problems in buying medications and
ished neighbourhood of the area covered by the obtaining assessment and treatment from the
team. With poor sanitary conditions, her home government healthcare system. Her problems
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SR Corrêa, C Mazuko et al.
were made worse by her relationship with her communities,6 with community carers working
brother and their shared difficulties in accepting alongside primary care teams. It identifies people
his illness. Her daughter also later described many who need palliative care, gives them specific care
episodes of Yara calling her son in the last days of and enrols their carers into a programme of
her life. monthly meetings called ‘Comunidade Cuidadora’
focussed on caring at end of life and providing
Yara had been diagnosed with lung cancer after a skills training. The joint working of professionals
metastasis was identified in the mastoid region in and supportive networks together is recognised
2015, and she was able to access health insurance as being transformational. Carers themselves
benefit for some time for her treatment. Her first spread this approach by recommending it to
appointment with Estar ao Seu Lado was in August others they know with life-limiting illness. This
2015. She had shock-like pain and paraesthesia forms part of a compassionate community
on the right side of her face, with local tumour programme in the Rio Grande area. The goal is
growth on the mastoid. As her illness progressed, a combination of primary care working in har-
she lost strength and movement on her right side mony with communities, providing education,
due to the brain metastasis. Despite this, and with resources and training to enhance the skill of
appropriate medications, her physical symptoms communities to care for their dying. This is a
were generally ameliorated by the team. But her potentially realistic approach in Brazil, where
disease progressed, she was increasingly confined resources and access to healthcare are limited.
to bed, and in due course died at home in 2016.
The patients and families described here are good
Her brother João was diagnosed with rectal can- illustrations of those who can benefit from pri-
cer in 2015 and experienced some improvement mary palliative care in Brazil. They received the
after treatment. But he in turn suffered episodes best care possible within existing resources, ben-
of mental health problems associated with his sis- efitting from the structure of the Estar ao Seu Lado
ter’s illness, very complex family relationship programme, the knowledge and attitudes of the
problems and challenging behaviour from his team, and use of medications matched to their
adult children that exacerbated his episodes of needs and conditions. However, they struggled to
pain. João had many children and his problems overcome obstacles exposed by the lack of a pub-
were often related to the attitudes of some of lic health approach to end-of-life care within the
them. Nevertheless, he remained in employment, National Health System.
with no immediate financial worries.
For many others, the situation is much worse.
The social and psychological problems of Yara Difficult access to opioids, the absence of pallia-
and João were closely related and spiritual suffer- tive care specialists to consult when necessary,
ing played an important role in them. João never delays in getting appointments with other special-
accepted his sister’s religious beliefs and attrib- ists and for clinical examinations, the lack of a
uted the cause of her disease to her religion, with network of electronic communication to record
many negative consequences for their relation- and share information about the clinical history of
ship. After his sister died, João’s situation wors- patients – all of these factors conspire to prevent
ened socially and medically and despite many receiving the best possible care. The scale is
attempts to maintain contact with him, his links daunting. In Brazil, it is estimated that 180,000
with the team fell away. people each year could benefit from palliative
care but this may be a low figure given the reali-
ties of healthcare in the country and the need for
Commentary palliative care among people with chronic and
Brazil has more than 208 million people, and long-term conditions.
1.2 million deaths and 600,000 new cases of can-
cer per year. Palliative Care services are patchily To address and overcome these issues and to try
distributed. The Family Health Strategy, made to improve access to best palliative care within
up from 43,000 primary care teams across Brazil, existing resources, ‘Estar ao Seu Lado – Cuidados
forms a comprehensive primary care network. Paliativos na Atenção Primária’ is working with
The Project Estar ao Seu Lado-Primary Palliative the Municipal Health Secretary and the
Care developed by working from Community Coordinator of the Family Health Strategy
Centres in a model based on compassionate programme.7 As a result, a public health agenda
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Palliative Care: Research and Treatment 00(0)
for palliative care has been incorporated into both.10 Could the Rio Grande example be repli-
the Municipal Health Plan for 2018–2021. cated and scaled up to achieve maximal coverage
This will enhance skills to primary care profes- thereby reaching the objectives of the Declaration
sionals as the main objective and address how of Astana, promoting health and well-being for
barriers to medications, clinical tests and ser- the people who need palliative care within a pri-
vices can be overcome. mary care context?
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