In this special post to celebrate World Hospice and Palliative Care Day tomorrow, Santiago Rodríguez Corrêa, a family physician, and Carla Mazuko, a nurse, from Project Estar ao Seu Lado, Brazil, pick up the theme of this year’s event: ‘Living and dying in pain: it doesn’t have to happen’.
Santiago and Carla describe the challenges they face in providing systematic palliative care in a community centre in Brazil. The team works in a specific territory and community and offers palliative care to people who need it through weekly outpatient appointments, domiciliary visits, and an out-of-hours telephone helpline.
A patient with kidney cancer with metastasis: he has increasingly severe pain, needs opioid rotation from morphine for methadone and has social and financial problems.
A patient with cancer of the cervix: she has urinary incontinence and does not eat because she needs to buy incontinence pads.
A patient with esophageal cancer: he is a drug addict and refuses admission to hospital in the final stages of his illness because he owes money to his dealer.
Another patient with final stage chronic obstructive pulmonary disease (COPD) fears the end of life with existential and spiritual needs. His dyspnea gets worse when he remembers that some of his daughters have abandoned him.
And yet another, a psychiatric patient, discovered her rectal cancer immediately after she had been raped. She has never accepted the colostomy bag and becomes a very aggressive person.
All the patients described above have so much in common. They are living with total pain and they are typical of the patients that our team supports every day.
Total pain is a concept, originally developed by Cicely Saunders, which recognizes pain as being physical, psychological, social and spiritual. She saw beyond the physical, the objective, the palpable pain. In primary palliative care, maybe more than in other situations, it is essential to see below the surface. Social/economic, physical, psychological and spiritual needs are red flags that warn us of impending danger. From the point of diagnosis, each patient’s suffering is unique and their needs are many.
The World Health Organization (WHO) defends the idea that palliative care should be offered early on for all life-threatening illnesses in all levels of care, with special attention to policies to develop primary palliative care within community centres.
Brazil has started to talk about the need for palliative care in primary care but it ‘speaks softly’ and does not even recognise the red warning flags. The patients described above have so much in common. They are living with pain, and sometimes see death as the only way out of a situation that lacks any kind of structure and resources.
Sadly, we can’t simply follow the example of the best palliative care centres around the world and try to apply it here, for example by assuming that we can use high-cost opioids. To do that would be unrealistic and would disregard the 18 per cent of our population who live in total poverty.
In Brazil, even if morphine is prescribed, the cost is unaffordable for many people. Most of our patients live in extreme social and economic conditions and many have to choose between eating (when they do have something to eat) and taking morphine (when prescribed).
Many of the people we support are living with severe conditions and disabling pain that pierces the soul and represents total pain in all its fullness. We accept this challenge and despite some hard and sad times, we are by their side trying to alleviate their journey of suffering until the end. We urgently need a public health end-of-life care approach adapted for Brazil to alleviate the real day-to-day pain of our population.
Links and resources
- Project Estar ao Seu Lado Facebook Page
- Brazil: time for palliative care in the community! Correa SR, Mazuko C, Floss M, Mitchell G, Murray SA. European Journal of Palliative Care, 2016; 23 (2). Download a copy here.
- Check out the World Hospice & Palliative Care Day website to see the events that are happening around the world.
- World Hospice and Palliative Care Day Toolkit.
- The Primary Palliative Care Research Group (The University of Edinburgh) – resources, teaching, publications, etc.
Read more about World Hospice and Palliative Care Day on the EAPC Blog.