Palliative care is not talking about death

Loneliness Valley. Madrid | Photography: Luis Camacho

Bernardino Lozano González is the coordinator of the EAPS of San Camilo. He has been attentive to Maryorli’s words and has intervened in the conversation to clarify that “here, in the San Camilo palliative unit, nothing is imposed on patients or family members.” Nino is how everyone knows him and that’s what he wants to be called.

The EAPS of the La Caixa Foundation in San Camilo was one of the pioneers, of those that started in 2008, with Nino already in the project. The San Camilo palliative care unit is privileged. It has 33 individual rooms and 30 of them are arranged with the Madrid Health Service (Sermas).. The occupation is almost one hundred percent all year round, according to him. Each room is different, decorated with motifs according to the space in which it is: whether it is dedicated to time, literature, painting, sculpture or music.

Nino knows well the work of the EAPS, how the number of teams has been growing and he is full of explanations as we go along through the halls and halls of the residence, where patients appear from their rooms. “Each one is different,” he insists. There is no hospital feeling. The clocks at the entrance are stopped. “They only give the time twice a day.”

“Right now, the median length of stay for patients arriving at San Camilo is from 9 to 10 days and the average, between 17 and 20 days. We have been here a few years in 32 days on average”.

Bernardino Lozano, coordinator of the EAPS of San Camilo.  PHOTOGRAPHY: LUIS CAMACHO
Bernardino Lozano, coordinator of the EAPS of San Camilo. PHOTOGRAPHY: LUIS CAMACHO

Nino’s story bursts into the request for help from a lady who goes out into the corridor with the help of a walker. She wants to know when mass is and if she can go down to the chapel already. “Don’t worry, Isabel, it hasn’t started yet.”

There is a job to do before you die so you can go in peace and leave those who stay behind. The team coordinated by Nino takes care of that. “In these patients there is a need to treat the spiritual dimension of the person. To be recognized, to be loved, to thank, to be grateful, to forgive us, to forgive, to love. All of these are spiritual needs that we all have: believers and non-believers; atheists and agnostics. So we address that dimension, because it is a need of every human being regardless of his beliefs or whether he has any.”

Death is an ending that is hard to accept for everyone. Sometimes, more to the family than to the patient. Pablo Sastre, palliative care doctor at the San Camilo EAPS recognizes that “there are people who arrive here without having lost any family member in their lives and, therefore, it is the first experience of loss they have”. On this issue he recalls once that he told a family that his father was going to die “and one of his sons said quickly and very spontaneously: IMPOSSIBLE. See what denial can be.”

Taking the step from denial to acceptance is a job that takes time. “Lately, we have received patients who, from the time they are diagnosed, until they die, a very short period of time passes. So, neither the patient nor the family changes the mental chip. So, those around him think of that healing possibility. Thus, we find family members who are very focused on caring for their patients: taking their blood pressure, asking for more tests and, perhaps, they do not need to have their blood pressure taken, nor do they do more tests and what they need is to close the cycle with that person. That is the process that must be carried out here: close the cycle of life with our loved ones”.

The bond and the time left to live

Question: How long is the minimum time the patient has to be in order to work on that dimension?

Nino’s response: “It depends on the person, but three days would be enough. Last year of the 500 who came there were a hundred and something people who were less than three days and, in that time, you can’t do anything, because no bond is generated.”

Pablo Sastre, palliative care doctor at the San Camilo EAPS.  PHOTO: LUIS CAMACHO
Pablo Sastre, palliative care doctor at the San Camilo EAPS. PHOTO: LUIS CAMACHO

Tailor’s reply: We have almost a third of patients who die in less than a week and many in less than three days. Is it worth coming here for three days? What we see, what the families tell us is that it is worth it. They explain that they feel accompanied by a team, knowing that their symptoms are under control and that they will not have any problems. When people say: I don’t want to live, what they are saying is “I don’t want to live like this”.

Yolanda López Pérez, psychologist at the Palliative Care Unit of the La Caixa program in San Camilo, also gives his point of view: “Experience here has taught me that you can work very efficiently, but in a different way, when that person’s lifetime is days. You have to identify needs almost instantly, you have to try to get the patient into prognosis as quickly as possible. And putting them into prognosis means you have to explain to them what their lifespan is. You have to explain to them that this is over. And that’s a big deal.”

How are the patients they serve?

The three professionals agree on the change in the profile of patients that arrive now. Nino explains that “he is more of an oncology patient. In the beginning he was a patient who arrived with multi-organ diseases, from a chronic situation. The stays were longer, linked to geriatric diseases. A 95-year-old person is more integrated into his life than he is going to die shortly. Now the patient’s profile has changed significantly, they are younger and with more recent diagnoses.”

López Pérez also insists on that idea: “The situation has become much more complex, because younger people come. That means they usually have young children. The issue of the pandemic has caused many diagnoses to be delayed, even by the person himself who does not want to go to the hospital so as not to getting infected or the tests themselves that have been delayed over time and that is already a brutal complexity. But, apart from that, they come very ill. A very high percentage come in a situation of the last days”.

Yolanda López Pérez, psychologist at the Palliative Care Unit of the La Caixa program in San Camilo.  PHOTO: LUIS CAMACHO
Yolanda López Pérez, psychologist at the Palliative Care Unit of the La Caixa program in San Camilo. PHOTO: LUIS CAMACHO

A very important part of the program of the La Caixa Foundation It is the training given to the teams that make up health professionals, because caring for patients in the final stage of life requires expert knowledge. Sastre explains the physician’s duty to create “true relationships with patients and their families.” For this, the patient must understand that “at that moment he is the only important thing in that relationship and in that situation”.

How do you do that? “All of this has its strategies and its forms, but to enter a room you have to have previously breathed, mentally review or with your colleagues something of the patient’s history: something as simple as their name, that of the relatives, the medication they is taking. Perhaps the analytical figures are not so important, but there is a lot of information that makes that relationship true. And in this there are not only communication skills, but also silence, for example. ” And, he adds, as an essential element, humor.

From the work of psychology, the professional points out that the integrating dimension of palliative care includes looking at the future of those who remain. “I mean, how are they going to stay?the relatives and there is the duel and that is why it is essential that we professionals know about grief, because we have to work with a preventive approach, not only here and now, but also what is going to happen next”.

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