Humanizing the end of life in hospice

If there is any certainty, it is that sooner or later – fortunately, sooner rather than later, due to scientific and social progress – we will all leave this world. An average of two or three people a day, up from a thousand a year, do so at the Clínic Hospital of Barcelona, ​​which has included care at the last stage of life with physical, emotional, social and spiritual support in its strategic plan. For patients and families. This initiative is supported by La Caixa Foundation’s program for comprehensive care of people with advanced diseases.

“For many years, and particularly in tertiary hospitals, medicine and health care have focused on defeating disease, but in the last 40 years the concept of chronic diseases due to longer life spans has emerged, the common feature of which is that all Patients die. This forces us to change the chip a bit and we have to take care of patients from beginning to end, without forgetting the disease. This is where the idea of ​​incorporating end-of-life care into our strategic planning comes from. This is the argument of Ferran Massanes, a trainee at the Clinic, a center that is training a large part of its staff in this matter.

One of the keys is to identify the patient who is in the last chapter of his biography.

According to oncologist Albert Tuca, one of the keys to coordinating social and medical resources in care is to identify the patient who is in the last chapter of his biography. This hospital has a high number of advanced chronic patients. Professionals estimated that 25% of those admitted had limited life expectancy. It could be a few months, maybe a year… A large proportion of people dying at the center are from recognized chronic causes and an average of two admissions were recorded in the previous year.

Many hospitals have resources for end-of-life care. “The difference with our project is that it is transversal throughout the hospital. Whatever service takes care of a patient, we have to identify and treat him. This is the fundamental difficulty and the latest thing: making sure that professionals are interested in all services,” says Tuka. For example, the ophthalmology group does not typically see patients with these characteristics, but focuses on eye health in the end stages to try to improve quality of life.

With a good plan, it is possible to reduce stress for the patient as well as the family.

With a good plan it is possible to reduce not only the patient’s stress, but also the stress of the family, who receive advice on aspects such as the uncertainties of biomedical development, emotional support or social assistance when death occurs. Doctors say, “A stronger family generates better patient care.” It is important that decisions are made at the final stage, which if written down will be clearer to the family and care teams.

In the clinic, where end-of-life practices are periodically evaluated, marriages are solemnized before a notary for the well-being of the patient and their family. It is time to focus on the patient more than the unbeatable disease. “Life does not end with the death of the patient. How is your family? It depends on how the disaster can occur: a single mother with a 2-year-old child, an elderly woman who does not have marital documents in order… death comes along so that life remains in the caregiver ,” says the coordinator of social work at the center, Ester Walls.

Work is being done on humanization of UCI

The center is updating all end-of-life protocols to standardize them as per clinical practice. For example, work is being done on humanizing the UCI. “Death in emergency rooms is in many cases inevitable and they are hostile environments for carrying out final wishes. We have the experience of a woman who wanted to see her pet in the ICU and we fulfilled that wish, or there are families from other populations who connected to the ICU with a tablet to be able to communicate with the patient. There have been,” explains Monica Gomez, head of interactions with the hospital’s satellite centers. “The thing that differentiates us – he continues – is that we don’t consider end of life the same as the healthcare sector. What everybody does is we put it into a strategic plan, gave it a project structure and made it a priority for the entire hospital.”

This dedication has allowed us to distinguish between the diversity of epigrams. “We realized that the Alzheimer’s process is not the same as cancer or a chronic kidney patient who decides to stop hemodialysis. Thus, the training is very transversal, with a very specific approach with different timings for specific diseases,” says Tuka.

A scale of complexity of palliative needs has been created

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, who has an estimated survival of six months but well-controlled symptoms, a brain in adequate functional state and a family environment in a position to support decision making, will have low complications.

And then there is sadness. A few days after the death, the hospital contacts families if they wish to express their views. About half respond and keep an appointment. “Basically they need to share and feel together,” says Walls. “They are, in many cases, elderly, lonely people who need to talk about how they feel and share their emotional, And even find comfort in talking about socio-economic difficulties.

A few days after the death, the hospital contacts families if they wish to express their views.

According to Tuka, no matter how announced, “the moment of death has a brutal impact.” “It’s a storm and half of what’s happened is still on you. Many times they are very grateful to be able to review what happened in the past few days. It is worth it to be able to talk about it with the care team, as many people wonder whether the deceased suffered, and such a question cannot go unanswered.

Clinic professionals claim the relevance of this is that in a highly technological environment, the focus in the final chapters has become entirely on the human aspect. They have managed to introduce these materials into various compulsory subjects of the UB Medicine degree and since last year, there is an optional subject on advanced chronic disease and palliative care in the third year, which has met with great success in requests from students. According to Massanes, the ideal would be to provide “a level of excellence in the end-of-life care for all professionals that they provide in their specialties.”

According to a study promoted by the La Caixa Foundation, psychosocial and spiritual care improves the well-being and mood of people with advanced diseases. 78% felt average or worse, a percentage that was halved after the intervention of psychosocial care teams (EAPS).

After receiving psychological, social and spiritual care, 66% believe that their beliefs and values ​​help them cope with the situation, as they reinforce the strengths and resources that people have in end-of-life situations. Are. Feelings of sadness also improve after psychosocial intervention: At the first visit, about 50% of people felt quite or very sad; After receiving care the percentage drops to 17%.

These results are in line with an evaluation carried out by the Chair of Palliative Care at the University of Vic in collaboration with the German Trias i Pujol Research Institute (IGTP), which included a sample of 6,471 patients with advanced disease with a mean age of 73 years.

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