Luís Gustavo Mariotti

Palliative Care: a reality in the comprehensive treatment to the patient

"Palliative Care is not an alternative treatment, but a complementary
and vital part of the full monitoring of the patient.”
(Dame Cicely Saunders)

For some years now, it is common to read or hear about Palliative Care, but little is known about it. We often find people, who have questions about its functionality, or want to know which professional is able to provide such care.

To enlighten the public, the Medical-Spiritist Association of Brazil (AME), through its Department of Palliative Care, prepared a booklet under the title Palliative Care – know and multiply, in order to provide more information to those interested in this matter.

Here you can read a brief interview with the coordinator of that department, the geriatrician Luis Gustavo Mariotti, who is also a member of the AME-Sao Paulo. 

Why is the demand for Palliative Care increasing? 

Luis Mariotti - According to the World Health Organization (WHO), the Palliative Care is a multi-professional approach, directed to any person affected by a disease that threatens the continuity of life, progressive and incurable, with the aim of improving the quality of life, preventing and alleviating suffering so that there is an early identification and perfect control of the symptoms of the various dimensions of the being (physical, social, psychological and spiritual). In this type of assistance, family members and caregivers also receive all necessary care to better cope with the disease presented by the patient. This is an approach that acknowledges a person within a bio-psychic-socio-spiritual dimension.

Many factors have promoted the expansion of Palliative Care. One is the great demand. It is estimated that about 40 million people worldwide is in need of Palliative Care, including children, adults and seniors. These people have diseases that can disable and/or cause the loss of their functional independence, resulting in various physical and emotional symptoms, affecting relationships, their work, within their families,  that can bring suffering to the family and caregivers, and that, most of the times, can lead them to the context of dying and to physical death.

Palliative Care offers many benefits to the patients with threatening diseases. Studies show that these people can live longer, stay less time hospitalized, and have a better control of physical and emotional symptoms, a greater spiritual well-being and a higher quality of life. They have the opportunity to better discuss with their physicians about the indications, risks, benefits and if they should undergo or not the proposed treatments, and their choice of where they prefer to die, and die with more comfort and dignity. Other studies also show the benefits to family members and caregivers, such as stress reduction.

The profile of Palliative Care, as a specialization, is another factor that helps in its disclosure and growth. In some countries (like the United States and Britain), Palliative Care is a medical specialty. In Brazil, since 2011, Palliative Medicine is recognized as a medical practice area, allowing the training of a growing number of professionals to offer Palliative Care.

Currently, Palliative Care is required by various international organizations as a human right, based on the right to the highest attainable standard of physical and mental health. This will, more and more, lead governments and health institutions to become aware of it and multiply it. 

Who can use such care? 

Mariotti - People of all ages need Palliative Care. The estimated number of people in need of care at the end of life is about 20 million. The greater proportion corresponds to adults (94%), of which 69% are over 60 years old and 25% are in the range of 15 to 59 years old. Only 6% of all people, who require Palliative Care, are children.

Bearers of cardiovascular disease (as in cases of Heart Failure), cancer, dementia (as in the case of Alzheimer's disease and other forms of dementia) and other progressive neurological diseases (such as Amyotrophic Lateral Sclerosis, Multiple Sclerosis, and Parkinson’s disease), chronic lung disease, chronic kidney disease, liver cirrhosis, HIV/AIDS are some examples of people, who have indication for Palliative Care.

Is there also an approach focused on children and youths?

Mariotti - Yes, children and young people can also be affected by diseases that threaten the continuity of life. In Brazil, there are already some services led by Palliative Care. I highlight a few: the Children's Institute at HC-FMUSP/SP, AC Camargo Cancer Center, Hospital Infantil Albert Sabin (Fortaleza/Ceara), Boldrini Hospital (Campinas/SP), TUCCA Hospice Francisco Leonardo (SP), Children's Hospital of Barretos (SP), and Cancer Institute (RJ).

We recently had the opportunity to follow along with other members of the Palliative Care team of the Hospital do Servidor Publico Estadual (SP) a case of a baby, who, from the fifth month of pregnancy, was diagnosed with a severe neurological abnormality. He remained in the pediatric ICU for about 30 days and then was transferred to the ward, still very weak and unable to survive without the aid of breathing apparatus. He died on the 36th day of life as a result of the disease evolution.

Therefore, it is important to note that Palliative Care should be provided preferably from the diagnosis of a disease that can lead the individual to death or to be characterized as progressive and incurable, regardless of age. 

How much can Spirituality and the Doctrine help the patients, families and health professionals during this period?

Mariotti - The beliefs and spiritual, religious, and cultural practices play a significant role in the lives of the patients, who are in Palliative Care, because most of them are religious and they provide a theoretical basis and ethics for clinical decision making. They establish a conceptual framework for the understanding of the human experience about death and dying, about the meaning of illness and suffering. 

Many doctors have difficulty in addressing spirituality/religiosity with their patients. Many believe that this approach is not their responsibility, because patients may feel embarrassed, afraid to impose a religious faith, or may feel insecure to address spiritual matters. However, most patients would like to discuss these issues with their doctors.

The role of a health team is to recognize and embrace the spiritual needs. Some points are fundamental to this:

• To listen attentively, with empathy, compassion, and with fraternal understanding is very important. One should be prepared to address spiritual matters if that is the patient’s will;

• Understand the patient and his relatives’ reaction to losses or limitations (physical, social, financial, emotional).

• Be prepared to deal with situations and feelings of the patients and their relatives, such as, for example, anger, denial, sadness, despair, fear, hopelessness.

• Designing and maintaining a network of spiritual support (with spiritual counselors or chaplains) according to the religion and to the patient and his family’s will.

• The health professional or volunteer must never impose or discuss their own religious views with the patient or family. Sometimes, for them to talk about the significance and meaning of their lives is more pertinent than to address religious aspects. 

As for the role of the Doctrine, I believe this can help the patient, family and care providers, because it is a source of faith, hope, patience, resignation and it explains the reason of our sufferings, it helps the Being in acquiring a greater understanding of human nature, its destination and the process of learning and development that permeates our existence. In addition, there is a link of convergence between the philosophy of Palliative Care and the Doctrine in relation to offering multidimensional care to alleviate the suffering of the Being and understanding death as a natural process. 

What are people going to find in the booklet produced by the professionals connected to the AME-Brazil?

Mariotti - The booklet aims to bring basic information and in a resumed manner about the Palliative Care’s principles, its indications and to whom they should be offered to, on how to approach the spirituality and how to offer spiritual care to patients and families according to the Palliative Care guidelines. It is an opportunity for the starting knowledge on the subject and an invitation for those who wish to join the Department of Palliative Care of AME-BRAZIL.

Authoress’ Note: 

The booklet, Palliative Care - know and multiply, is available in www.amebrasil.org.br page (in the item Department of Palliative Care) or facebook AME Brazil - https://www.facebook.com/ame.brasil/