2023-10-27 15:20:00
Anne Carrari was diagnosed with ovarian cancer Diego Padgurschi/Agência Einstein In 2015, student Anne Carrari was 40 years old and was told by a doctor that she only had a 20% chance of being alive within five years. It had been about a year since she had been diagnosed with stage 4 ovarian cancer — that is, her condition was extremely serious, the disease was already quite advanced. “When this is the diagnosis, palliative chemotherapy is used,” says Carrari, who came across the term “palliative” during his treatment just three years after the discovery of the cancer. • Click here and receive news from R7 on your WhatsApp • Share this news via WhatsApp • Share this news via Telegram “I was getting into the hospital elevator to start a new chemotherapy protocol, I was going to receive the application that day, when I hit the I looked at the sheet signed by the doctor and it said ‘palliative treatment’”, recalls the student. At first, she was surprised. “Nobody had talked about it with me until then.” In common sense, palliative care is still closely associated with the end of life, but in practice, it serves to offer quality of life. “When I sit in front of residents at the hospital where I receive treatment, they are in shock,” says Carrari, who has been a palliative patient for nine years. “I’ve been sentenced several times, I’ve heard it won’t last more than four months, and it’s been five years!” See also Health Compound present in fruits and vegetables can help fight tumors Health Young man discovers cancer after feeling extreme tiredness: ‘I had a 5% chance of surviving’ Health Technique uses the same molecule to diagnose and treat cancer Palliative care, according to experts in area, is for anyone who has a life-threatening disease – that is, one that puts their life at risk – and at any stage of treatment. “The recommendation is that care teams come together from the moment of diagnosis”, says Regina Liberato, a psychologist specializing in palliative care and coordinator of the emotional health committee at the NGO Oncoguia. “There is still a lot of prejudice, but palliative care is for anyone of any age and at any time of a life-threatening illness, not just for the end of it”, points out Liberato. Chronic diseases, such as diabetes and cardiovascular problems, in addition to cancer, are examples of diagnoses that can receive palliative care. The term “palliative”, according to researchers, originates from the word “pallium”, which was a type of covering, a blanket used to protect oneself. With the evolution of the language, it became “palliar” and received the meaning of “to remedy”. Health professionals and palliative care patients, however, prefer to use the word in a more positive sense: covering the patient with care. “It is a structured approach by several professionals who look at the patient from a biological, psychological, social and spiritual perspective”, explains Liberato. The WHO (World Health Organization) defines palliative care as an approach that promotes the quality of life of patients and their families, who face illnesses that threaten the continuity of life, through prevention and relief of suffering. According to the organization, the practice requires early identification, assessment and treatment of pain, in addition to other problems of a physical, psychological, social and spiritual nature. To raise awareness about the importance of palliative care, the agency promotes World Palliative Care Day, annually celebrated on the second Saturday of October. There is no law that regulates palliative care in Brazil, but there is a PL (Bill) to create a National Palliative Care Program. In 2022, PL 2460/22 was approved by the Social Security and Family Committee of the Chamber of Deputies. The CFM (Federal Council of Medicine) has a resolution that establishes guidelines to assist in the care and treatment of patients facing the final stage of life and indicates the provision of palliative care. The Ministry of Health also has a 2018 resolution that defines the standards for offering palliative care in the SUS (Unified Health System). Normally, health units have multidisciplinary palliative care teams. Treatment of this type, like the chemotherapy that Anne Carrari underwent in 2018, is just one aspect of palliative care. “It’s like an umbrella”, explains Farah Christina, palliative care doctor at Hospital Israelita Albert Einstein. “It’s thinking about quality of life”, she adds. Benefits of palliative care There are case reports and scientific studies that point out important benefits of palliative care for both patients and healthcare teams and hospital facilities. “Health care costs are reduced, patients have better symptom control, hospital stays are reduced, families deal better with grief, and, among professionals, there is a reduction in cases of burnout”, says the doctor palliative care at Einstein. Carrying out research to provide scientific evidence on palliative care is still a challenge, says Christina, as the approach is individualized and varies from case to case. “It is difficult to carry out controlled and randomized studies, as each person experiences an illness differently, so it is difficult to measure the effects of palliative care”, reflects the doctor. “Clinical research seeks to measure the reduction in mortality, for example, which is complicated in this case because our objective is not to reduce mortality.” Since she effectively entered palliative care, Carrari says her quality of life has improved. “For me, it is important to take a foot bath, do gymnastics, things that chemotherapy prevents me from doing, so for me it is not worth it”, says the patient. It was with the help of the palliative care team that she was able to opt for treatments that allow her to lead a normal life. Her routine includes physical activities (weight training twice a week and daily walks), meditation, periodic consultations with an oncologist, psychologist and nutritionist, as well as other activities not related to health, but which are fundamental to her well-being. Every day, Carrari does volunteer work at Oncoguia offering support to other women diagnosed with cancer and sending wigs to patients who lost their hair during treatment. She also has a degree in Public Health at USP (University of São Paulo), takes care of the house, children and pets. “I have a normal life, but I’m living very intensely, I consider myself healthier than many people who don’t have cancer, sometimes I forget that I’m a patient”, says the student. Read also After all, should floss be used before or after brushing? Practicing hot yoga reduces symptoms of depression, says study Medicine for impotence can reduce risk of Alzheimer’s by up to 60% “I say that my life has an AC/DC, Anne before cancer and Anne after cancer. Before, I wanted to please everyone and lived on autopilot, I didn’t prioritize myself, but then it was a rebirth, I found a purpose in life, no matter how much time I have”, says Carrari. Her current dream is for all public hospitals to have palliative teams. To achieve this, whenever she can she participates in many events, such as congresses and lectures and maintains an Instagram page (@sobrevivi_ao_cancer_de_ovario) to talk about her illness and tell details of her life. Like actress Angelina Jolie, Carrari has a genetic mutation called BRCA 1, which means she has an increased risk of developing cancer. “I have active disease and control its progression, so I undergo exams every three months,” she says. “I’m famous at the hospital,” she jokes. Quality of life and death In addition to quality of life, palliative care also seeks to offer quality of death. “It is not a process to prolong death, but to allow it to happen in the most natural way possible, during the time of the disease and controlling the patient’s symptoms”, explains Christina, from Einstein. “Death is ugly, even when it happens without suffering, so we need to prepare people for it”, argues the expert. Therefore, palliative care is extended to those who need to face the loss, family members, friends and caregivers. “It doesn’t end when the person dies, we accompany the family in their grief”, says the specialist. For Carrari, living with the idea of death allows her to face finitude and value the present. “I’ve been more afraid of death, I’m afraid of feeling pain,” she says, and she also fears the suffering that her death will cause for her family. Carrari has three children and has been married for 30 years. With guidance from the palliative care team, she has already documented how she wants to die. “I want to have the comfort to die in peace, I don’t want to die alone in an ICU,” she says. For her, palliative care is only provided at the end of life because there are not enough teams to offer it earlier. Before being diagnosed, the student saw her mother-in-law receive palliative care due to the progress of Alzheimer’s. “She died at age 99 at home, without pain, without being in an ICU,” she recalls. Even without recognizing anyone around her, Carrari’s mother-in-law had a team and family by her side in her last hours. “That’s dignity to die for,” she reflects. Elderly people are still the main age group of people receiving palliative care. The most common profile is still cancer patients, according to health professionals, as well as people with neurological diseases, such as dementia, Parkinson’s and Alzheimer’s. “When there is no possibility of cure, the patient remains exclusively in palliative care”, says Liberato, from the NGO. She reinforces that, even though it is associated with death, palliative care is for anyone who receives a diagnosis of a life-threatening illness, but which will not necessarily kill the patient. “We prepare for the worst, but hope for the best”, comments Christina. “But many people are discharged from palliative care,” she says. In 2006, Liberato was both expert and patient. At age 49, she was diagnosed with breast cancer. “My prognosis, at that moment, was one year to live,” says the psychologist. “I lived as if it was always the last day of my life. I went to dance classes, met a group of friends who often went out to socialize and dance, I worked every day with pleasure, it was the life I had and I insisted on living it intensely”, says Liberato, who has worked in palliative care since 1994 Even free of the disease, she still sees herself as a person receiving palliative care for cancer: “I make a point of taking very good care of myself, my appearance, my physical, mental and spiritual health. I am my priority.”
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