Can I decide my illness?

This is the 4108th article of Da Yi Xiao Hu

I saw a blog post on Weibo titled "The patient is not anxious, but the doctor is": A patient took the test results to the hospital and was diagnosed with chronic renal failure, uremia, metabolic acidosis, hyperkalemia, etc. Hyperkalemia can cause cardiac arrest at any time. The doctor asked him to be hospitalized, but he disagreed, saying that he was not feeling well. The doctor insisted on not letting him go, and he said he would think about it. After thinking about it for a while, he said he would stay the day after tomorrow. The doctor asked him to call his family, and explained the interests to his wife on the phone. At his wife's insistence, he agreed to be hospitalized. Patients often decide whether to receive treatment based on symptoms, but for some diseases, it is too late when symptoms appear. It was precisely because of persistence that a tragedy was avoided. Netizens commented, "Please fully trust the advice of your attending physician and cooperate with the treatment. Don't spend too much time hesitating. No matter how long you hesitate, you can't make a better professional judgment than the doctor."

I think if you ask a random passerby who decides your health, most people will probably answer without hesitation: Of course, myself. Anyway, that's what my first reaction was. But I have been working in the hospital since I graduated from college, and I have come into contact with many patients and families. I found that in some situations, patients sometimes really have no say. If a patient health decision-making model is established, the stakeholders generally include three parties: patients, family members, and doctors. With the changes in society and the awakening of self-awareness, each family has a different understanding of the rights and obligations of the three parties, and the weights played by the three parties in their respective decisions are also different.

In one case I experienced, the daughter of a leukemia patient described her mother's treatment process in detail and included her thoughts on the treatment decision.

First, in terms of the role of patients and their families, she believes that fighting the disease should be viewed as a family project, with different core decision makers at different stages, but it is always a team effort. The patient is the subject, but not necessarily the core decision maker. The core decision maker must be able to bear the responsibility and consequences of all decisions, clearly communicate the "vision of patient recovery" to the team, and mobilize resources based on this vision.

Secondly, under the condition of being consistent with the interests of the patient, the core decision maker can be a consistent authoritative person in the family. If there is no one at home who is authoritative enough, choose someone who has strong information acquisition ability, high emotional intelligence, and can always take care of the patient to make the decision. If no one meets all the conditions, let someone with high comprehensive information acquisition and emotional intelligence make the decision, and then assign tasks with the family and cooperate as a team.

Of course, the core decision-makers should fully respect the opinions of the patients themselves, but they do not have to obey the patients completely. They need to fully communicate with the patients. Especially when the patients are old and very weak and ask to give up treatment, the family members should consider whether they choose not to give up because of their inner persistence or because the patients can really be saved and the treatment is not that painful.

In addition to comprehensive abilities such as daily authority, the ability to obtain information, and emotional intelligence, the financial and social resources possessed may all become weights in the struggle for decision-making power, but the most important weight is rational love, which is consistent with the interests of patients.

In another case, an elderly female patient with a serious illness trusted her husband very much. She believed that treatment decisions were family matters and did not want doctors to be overly involved. She was in favor of having family members act as intermediaries to pass information between doctors and patients.

When asked whether the decision should be made by one person, she believes that in many cases this choice involves more than one interested party, and the attitude of the family members is also very important. Because there are many parties involved, it is inevitable that there will be conflicts in the opinions of all parties, which need to be resolved through negotiation. Regarding whether patients should participate in decision-making, she believes that if the patient wants to participate and has sufficient psychological tolerance, he should participate. She believes that economic ability and family relationships will affect whether a consensus can be reached on the decision. For example, one of her patients needs his brother to provide bone marrow for transplantation. Although there is no problem with the economy, her brother and she do not have a harmonious relationship, so the transplant cannot be carried out and can only choose the second best option.

Based on the above, I believe that the role of doctors in decision-making is mainly to provide advice, but when the patient's life is threatened, the doctor has the responsibility and obligation to safeguard the interests of the patient. In the process of disease treatment, the patient is the main body, but not necessarily the core decision maker. The decision should be made by a family together. Conditions for becoming a core decision maker: In addition to the authority, information acquisition ability, emotional intelligence and other comprehensive abilities formed daily, the funds and social resources possessed may become the weights in the struggle for decision-making power, but the most important weight is rational love and consistency with the interests of patients.

Author: Hematology Hospital, Chinese Academy of Medical Sciences

Wang Hailong Attending Physician