World reference in palliative care, Xavier Gómez-Batiste is the scientific director of the ‘Comprehensive Care Program for People with Advanced Illnesses’ of the ‘la Caixa’ Foundation. The program, which since its launch in 2008 has implemented 65 psychosocial care teams, with nearly 300 professionals, and has attended to more than 600,000 people, including patients and family members, has brought together the entire team this week at CaixaForum Valencia psychosocial to continue deepening the systemic look at the Comprehensive care for people at the end of life.
Is palliative care at the end of life a right?
It must be. It is a fundamental human right. But we find that many times psychosocial and spiritual care is not included in the portfolio of services. That is why we emphasize multidimensional and multidisciplinary care that addresses both the physical and emotional, social, spiritual and ethical needs of patients and their families.
A dignified death?
There are several words that we must rescue. One is dignity at the end of life, which has sometimes been associated with euthanasia, but in reality it is an end lived with dignity and respected by others.
What other words should we rescue?
Compassion and spirituality. Compassion is a humanistic feeling, not strictly religious. It is the individual human response to accompany suffering. Spirituality also transcends religion, it has to do with one’s life having meaning and beliefs. People with beliefs and convictions live better with advanced disease than those who do not. What we have done in the program is to professionalize it and make the patient find meaning in her life.
What are the objectives of the program?
Improve unmet social needs, fill that hole. The mission of the program is to care for and support people who have advanced illnesses and whose psychosocial, spiritual and ethical needs are not being met because, as I said, this topic is little or not addressed at all. The aim is to improve the quality of life and the acceptance and adaptation to the advanced illness of the person who suffers from it and their relatives, to encourage the end-of-life process to be experienced in peace, but also to be seen as a right. For this, it was very important that we generate evidence and experiences, with an innovative care and organization model. And we have. Now is the time to knock on the door of the Public Administration and explain that what is not covered, we know how to solve it. We have evidence of how organized compassion gives affectivity and is efficient. If we want to go towards a society that is caring and compassionate, this is the path.
How can you die in peace?
Good question! We are doing a research project and we have defined a few parameters that allow us to live in peace the process of dying: the meaning of life in its beliefs and values; the effective support of the family and the most direct environment and relationships; symptom control; the legacy that is left; autonomy, being able to decide; personal characteristics, if you are optimistic, for example; and, finally, the guarantee of good care. The ideal result of our program would be for people, at least as far as the environment depends, to be able to live the process of dying in peace.
Who requires more attention, the patient or the families?
We do not serve patients, we serve families who have a patient. Sometimes there are families who suffer more than the patient himself. For example, the acceptance phases are not only valid for the patient, but also for the family or the most direct environment, especially if there are much more vulnerable people. The family needs emotional support, education and help to know how to respond, how to care, and it is essential because the patient needs his family to know how to do it. Support is also needed to identify bereavement risk and prevent complicated bereavement. It is a systemic view, which is the most advanced and community view of palliative care. If both the family and the patient’s relational environment are aware of how they can help in a situation of advanced illness, the possibility of receiving support is multiplied.
When should we start preparing for death?
As the English say…, it’s too soon until it’s too late. Since this thing of dying is a fairly frequent thing, let’s talk about it, let’s do pedagogy, and let’s involve the whole society.
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Xavier Gómez-Batiste: “Living in peace in the final process of life is a human right”