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2023-05-29 03:20:00
When you’re on your deathbed, you just want to be with your family and not suffer. Little more is asked for, sincerely resolves Eduardo Bruera, an oncologist and expert in palliative care. He knows what he’s talking about. The doctor (Rosario, Argentina, 68 years old) launched the department of Palliative Medicine, Rehabilitation and Integrative Medicine at MD Anderson in Houston in 1999, the largest in the United States, and has been there, at the foot of the bed, accompanying the end, too many times. “What I see is what is important to them. And they say that it means being close to their loved ones, not being a burden to them, being free from suffering and also, in most cases, reinserting their spiritual relationship”, explains the oncologist, who is visiting Barcelona to be invested as a doctor. Honorary by the International University of Catalonia (UIC).
Bruera denounces the lack of investment in palliative care and the weight of the taboo that still surrounds death. The doctor criticizes, for example, the lack of a medical specialty in Spain of his discipline and the overtreatment of some terminal patients due to the lack of a rigorous and structured approach at the end of life. “Death is going to come to all of us,” emphasizes the oncologist, who claims to stop looking the other way and reinforce end-of-life care.
Ask. Is little attention paid to palliative care?
Answer. Unfortunately, too little attention is paid to it where attention is most needed. And that’s in the big hospitals, in the medical schools, in the places where decisions are made that are going to have long-term effects on how patients are treated. The existing paradigm right now is one based on disease, not patient, and money goes to that. All hospitals have an intensive care unit and very few have a palliative care unit. And that doesn’t make much sense because in all those hospitals people die.
P. In the university they teach them to cure patients. If the patient dies, is it interpreted as a failure and therefore makes this area a taboo?
R. I totally agree. If I focus on the fact that my success is linked to curing the sick, I take the fact that they are not cured as a personal and professional failure, I run away from that battle because I lost it and I run out looking for another one. It’s ironic because 100% of us are going to die and it doesn’t make sense to look for a cure for something and forget that the cured person is also going to die. Death will come to all of us.
P. But nobody wants to talk about death.
R. They don’t want to and medicine doesn’t want to invest in making that end of life less painful. Undoubtedly, when we reach the end of our lives it will be a very difficult time, but it doesn’t have to be so. It’s more difficult because we don’t have the structures and processes to alleviate that unnecessary suffering.
P. Why don’t you want to reverse the medicine?
R. I think it is a cultural issue. Since the development of antibiotic therapy, medicine has become a little more ambitious in changing the natural history of diseases and all medicine has been oriented towards that: healing, prolonging life. And we kind of forget that, in the end, we are all going to die. This cultural change brought about by vaccines and antibiotics led us to abandon something that made us credible before, which was human treatment, the relationship we establish with the patient and the family, the way in which we could soothe and console when we had fewer means of treatment. What we try to do in palliative care is reintroduce that, not replace the curative intent.
Medicine does not want to invest in making the end of life less painful”
P. If within society there is such a rejection of death and it turns its back on it, how is it possible to make a change in the medical field?
R. The changes must be made through accepting, recognizing and integrating palliative care units, where people who are suffering a lot arrive and are relieved in their physical, personal, spiritual, family suffering and die. There is much that can be done to reduce suffering, but if we do not have a clinical model, there is nothing to show, the taboo will persist and turning our backs on death, too.
P. What can be done in this phase of life?
R. When I recognize that I have a disease that is not curable, 100% of the time I will have moral suffering, anguish, lack of certainty, sadness, sometimes anger, other times denial. And that’s part of being alive. We cannot be alive and not suffer. It makes no sense to think that one can avoid that, but if my hospital, my doctor, turns their back on me, I am excessively sad and defeated, there is no help for me, that suffering is exacerbated. It is not logical to think that this stage of my life will be free of suffering, but it is logical to think that a lot of that suffering can be alleviated for me and my loved ones.
P. As?
R. With structures and processes. I would like to tell a politician that they do not have to invest or create jobs, but I would also like to tell them that it is an extraordinary investment and I will explain why: at this time, when the patient with cancer or heart failure is going to see his doctor, he says, “Well, he’s not responding well to the treatment, let’s try another month.” And that other month of immunotherapy is tremendously expensive. Laboratory studies and radiology are tremendously expensive and, in general, they are not very useful, but it is the element that this doctor has to give him hope and it also takes 10 minutes of his time. A discussion about the disease not responding well could take an hour and a half, put the patient in a situation that the doctor doesn’t know how to handle because he’s not trained, and then what happens? Well, he ends up spending a huge amount of money that is not very useful. Imagine a situation in which that oncologist tells the patient: ‘Look, I don’t know if there is treatment, but there is Dr. Bruera, who is here next door and who is going to help me a lot: I see that patient, I spend time with him and does not receive expensive treatment, he receives me. There is a human hope, because the suffering of the patient and the family is alleviated, but there is also an economic hope.
P. Are too many useless therapies being administered at the end?
R. Yes. And they are given with good intentions, because it is what I can do. But they don’t help much. And they cost a lot and can be toxic. But it is what I have.
P. Do you push the machine all the way so you don’t assume they can’t do more?
R. Because I don’t know what I can do, I don’t know how to say it, how to handle it and I don’t have anyone, I don’t have a palliative structure next to me to help me. I am alone, as an oncologist, as a cardiologist, as an internist. I am alone in front of the patient with the knowledge that I have. And I do the best I can do. There are no good and bad in this movie. The problem is the movie itself.
P. What is the current x-ray of palliative care?
R. We know we can do more. We know much more, but we don’t reach patients as we should because we don’t have the structure. We have incontrovertible evidence that palliative care vastly improves quality of life compared to conventional treatment, but we haven’t gotten the investments made to make it happen for you. I am very optimistic that we are evolving, but it saddens me that so many patients who are going to die this year are not going to agree because we still do not have the vocation to establish the structures.
P. He said that they have learned a lot, but what do they need to know?
R. What you and I fear most when diagnosed with cancer is pain. Pain is a threat that may be worse than death. If you come with cancer today, to treat it I can give you a remedy that is probably no more than two or three years old, because there is a development, an investment, and there are many remedies. If what you have is pain yourself, I am going to give you a remedy today that is 230 years old, which is morphine, which is still the number one treatment. How can it be that the same person to whom one gives a new treatment for a tumor, when they are suffering from pain, is given a treatment that is 230 years old, that is not safe, that can cause addiction, that has side effects? …? We need to do more research on how to treat pain with more modern and evolved remedies. Nor are there sufficiently well done studies on how to talk to the patient. There are many holes in our knowledge of suffering.
We have incontrovertible evidence that palliative care vastly improves quality of life compared to conventional treatment, but we have not been able to reach patients”
P. Can suffering always be alleviated?
R. Suffering can always be alleviated. But can suffering be eliminated? I would say unfortunately no. But I can comfort the patient, the family, stay by their side and accompany them. And that has a great relieving effect. Transforming it into something that one can totally eliminate, I think it would not be humanly possible, but it can be greatly alleviated.
P. In Spain, the euthanasia law was approved in 2021 and the palliativists were critical of the norm. Can euthanasia coexist with palliative care?
R. Yes perfectly. The majority of Spaniards when they are sick do not want to die, what they want is not to suffer. There will be a minority who want to and those who may want to, and until the day they do, they will probably benefit from palliative care.
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