Palliative care: comprehensive care when wellness is importantDr. Centeno: "Palliative medicine improves well-being and alleviates suffering".Dying in peace: palliative care, a true progressive optionEvery year in Spain more than 110,000 people die from cancer, almost a thousand from neurodegenerative diseases such as ALS, and more than 150,000 from organ failure. In total, there are more than 250,000 people.
Studies have shown that a high percentage of these patients lack relevant information in the last phase of their disease. Knowing this information would allow them to make important decisions. And not only about treatment, but also about things they want to do while they have life, or arrangements about their family, for example.
Because what is important is not only the final moment of life. What we do while we live, even in the moments of greatest fragility, until that final moment arrives, is of utmost importance.
My experience as a palliative care nurse for nearly two decades, and also as a doctor of bioethics and university lecturer, is that human beings are capable of constant adaptation and growth, from youth to senescence. Even in the last moments of their existence, patients ask themselves questions that they had never considered before. They value details they previously thought insignificant, and at that moment, they are of utmost importance to them.
At the Laguna Care Hospital, where I have been working for 19 years, I see couples who, after 20 years together, and at the end of their illness, have decided to get married. Families who, after many years separated and divided, have decided that there will be no other time for reunion. Children who forgive their parents, parents who forgive their children, and sick people who fulfill lifelong dreams, from meeting their favorite soccer player, to holding a painting exhibition or enjoying a last meal with their family.
There are no small dreams at the climax of life.
Communication with the patient
When we talk about palliative care and final moments, many people imagine a scenario far removed from reality, a practically unconscious patient. But the reality is that there is much life at the end of life, if patients receive the appropriate clinical care and treatment to control their symptoms. These are moments that, if properly treated, can be moments of happiness.
Communication with the patient is based on empathy, genuine concern for each person, and is based on mutual trust.
Encarnación Pérez Bret
But in order to be able to carry out this life project, it is very important to take into account that the patient must be informed. Sometimes, the patient may prefer to delegate this decision making to a trusted loved one, and not receive this information on prognosis and evolution. It is a personal decision, and the healthcare professional must respect this wish of the patient, exploring from time to time whether it is maintained, and answering every question he or she raises. It is a dance in which the patient sets the pace.
For this reason, information must be adapted to the capacity for understanding, sensitivity, values and way of seeing the world of each sick person. For this reason, communication is an art that should be part of health and medical practice, and should be integrated into the cross-cutting training of all students of Health Sciences. Communication with the patient is based on empathy, genuine concern for each person, and is based on mutual trust.
Knowledge of diagnosis and prognosis has been shown to improve the quality of life of advanced stage patients. According to the latest studies, patients who have this information on diagnosis and prognosis have a lower rate of anxiety and nervousness (only 12.5 % reflect anxiety, compared to 62 % of patients who do not have this information).
Knowing the evolution of the disease, therefore, is key. But it must be done at the key moment. We do not make the same decisions about treatment when we are at the height of our age and health as we do when we are already ill. Nor do we have the same maturity at 30 years of age as we do at 75.
Differences with the living will
This is what the Advance Care Planning. It is a care model implemented in many hospitals and health centers that allows addressing these and other aspects of information and the disease with the patient and his family, and accompanying them in the decision-making process, precisely at the moment when the decision is relevant for the patient. Not before, not after.
It is a model based on doctor-patient trust, which adapts to the reality of that moment and to the person in question, also taking into account his immediate environment and family circumstances. It is a tailor-made glove, but it follows a care and scientific model.
From the Training Center of the Hospital de Cuidados Laguna we have also proposed a working model that we have provided to some hospitals, and that we can also provide to professionals who wish to do so, based on a gradual scale.
Advance Care Planning makes it possible to discuss aspects of information and the disease with the patient and his or her family, and to accompany them in the decision-making process.
Encarnación Pérez Bret
This does not prevent the Living Will from also being a relevant tool. Especially, in relation to the decision about some treatments, when an accident or an unforeseen circumstance occurs that invalidates us for making decisions.
But it is important to bear in mind that the Living Will, First and foremost, it is a legal document, not a clinical one. It usually proposes decision making as a hypothetical because it is usually done long before suffering a pathology. Although it can also be done at the time of disease diagnosis, it is less common.
Advance Care Planning, In contrast, it is a care and health model that addresses the situation and problems associated with that particular ailment after diagnosis. It addresses the circumstances that will occur in that context.
Palliative care
In the face of the Euthanasia Law, there may be people who decide that in certain circumstances they do not wish to continue living, and leave that reflected in their Living Will. However, my clinical and human experience shows me that many of these people, who considered some aspects of the disease to be unbearable, when the time comes, have the capacity to face it in a peaceful way, because treatment with Palliative Care makes their symptoms tolerable and bearable. In these circumstances, and in my experience, patients want to live.
It is important to decide with the patient and not for the patient.
Encarnación Pérez Bret
Often, their scale of values changes. They adapt, and discover many things that they perceive as important and that had been hidden until then. Like an obstacle course that, in the last meters, leads to a sprint to win the race.
That is why it is so important to decide with the patient, and not for the patient. This is the basis of Advance Planning. It means being by the patient's side at the moment when he needs to be advised, so that he can make the decisions he wants to make at the moment he is ready for them: where he would like to be at the final moment, with which people, in what way, the intensity of treatment, all this with the clinical situation he has at that moment, and the real or foreseeable potential problems that are foreseen.
D. in Nursing and Social Anthropology, Palliative Care Nurse. Laguna Care Center Hospital, Vianorte-Laguna Foundation.
