If there is one certainty, it is that sooner or later – fortunately, increasingly later, thanks to scientific and social advances –, we will all leave this world. An average of two or three people every day, a thousand a year, do so at the Clínic hospital in Barcelona, ??which has incorporated care in the final stage of life into its strategic plan, with physical, emotional, social and spiritual support for patients and families.
“For many years, and especially in tertiary hospitals, medicine and healthcare have focused on defeating disease, but in the last 40 years the concept of chronic diseases due to longevity has emerged, with the common characteristic that all patients end up dying. That forces us to change the chip a little and, without forgetting the disease, we have to care for patients from the beginning to the end. This is where the idea of ??incorporating end-of-life care into our strategic plan comes from.” The reasoning is from Ferran Masanés, an internist at the Clínic, a center that is training a good part of its staff in this matter.
According to oncologist Albert Tuca, one of the keys is to identify the patient who is in the last chapters of his biography to coordinate social and medical resources in care. The number of advanced chronic patients is highly prevalent in this hospital. Professionals quantified that 25% of those admitted have limited life expectancies. It could be a few months, maybe a year… A large part of the people who die in the center do so from identified chronic causes and have registered an average of two admissions in the previous year.
Many hospitals have resources to care for the end of life. “The difference about our project is that it is transversal to the entire hospital. Whatever service cares for a patient, we have to identify it and treat it. This is the fundamental difficulty and the newest thing: ensuring that all services have professionals interested in it,” says Tuca. For example, the ophthalmology group does not usually see patients with these characteristics, but is attentive to ocular health in the final stretch to try to improve quality of life.
With a good plan it is possible to reduce the stress of the patient, but also of the family, who receives information about the uncertainties of the biomedical evolution, emotional support or advice on aspects such as social assistance when death occurs. “A strong family generates better patient care,” doctors say. It is important that decisions are made in the terminal phase, which if they are in writing will be clearer for the family and the care teams.
At the Clínic, where end-of-life functioning is periodically evaluated, marriages have been officiated before a notary for the well-being of the patient and their family. These are times to focus on the patient more than on the illness, unbeatable. “The end of life does not end when the patient dies. How is the family? Depending on how a disaster can occur: a single mother with a 2-year-old child, an older woman who does not have the couple’s papers arranged… Death is accompanied so that there is life in the caregiver,” says the coordinator. of social work at the Clínic, Ester Valls.
The center is updating all end-of-life protocols to standardize them in accordance with clinical practice. Work is being done, for example, on the humanization of the UCIs. “Death in the emergency room is inevitable in many cases and they are unfriendly environments to facilitate last wishes. We have had the experience of a woman who wanted to see her pet in the ICU and we facilitate that wish, or there are families from other populations connected with tablets to the ICU to be able to communicate with the patient,” explains Mónica Gómez, head of interaction. with the hospital’s satellite centers. “What differentiates us – he continues – is not that we treat the end of life, which everyone in the healthcare sector does, but rather that we have placed it in the strategic plan, given it a project structure and made it a priority for the entire hospital” .
This dedication has allowed us to establish distinctions between the diversity of epilogues. “We realized that the process of Alzheimer’s is not the same as that of cancer or that of a chronic kidney patient who decides to stop hemodialysis. Thus, the training is very transversal, with a very specific approach to specific diseases, with different times,” says Tuca.
Thus, through a study with 607 patients, a scale of complexity of palliative needs has been created that has three levels. A person with advanced cancer, with an estimated lifespan of six months, but with well-controlled symptoms, a mind in an adequate functional situation, and a family environment in a position to help them make decisions, would be of low complexity.
And then there is the grief. A few days after the death, the hospital contacts the families in case they wish to express themselves. About half respond and keep the appointment. “Fundamentally they need to share and feel accompanied,” says Valls. They speak, in many cases, of elderly, lonely people who find comfort in talking about how they feel and the emotional, affective, and even socioeconomic difficulties they have.
No matter how much it is announced, “the moment of death has a brutal impact,” according to Tuca. “It is a storm and you are left with half of the things that have happened. Many times they are very grateful to be able to review what happened in the last few days. Being able to talk about it with the care team is worth it, because many wonder if the deceased suffered, and a question like this cannot go unanswered.”
The Clínic professionals boast of the relevance that attention to the last chapters has acquired, an entirely human aspect, in a highly technical environment. They have managed to introduce these contents in various compulsory subjects of the UB Medicine degree and, since last year, in the third year there is an optional subject on advanced chronic disease and palliative care, with great success in requests from the students. According to Masanés, the ideal would be “for all professionals to provide the level of excellence in end-of-life care that they provide in their specialties.”
