Mrs. Kwok has been healthy her whole life. At the age of 88, she takes regular walks in her neighborhood and does some cooking and light housework in the home. She lives with her husband and her eldest son’s family. She also has a younger son and a daughter and enjoys visits from her many grandchildren. About a week ago, she developed abdominal pain, nausea and vomited a few times. Her oldest son, Chung Man, brought her to the hospital and she was admitted to the medical ward.
A CT scan of her abdomen showed evidence of bowel obstruction from a mass in her colon. A nasogastric tube was placed for decompression and dark green bilious fluid immediately drained into the collecting container. A colonoscopy with biopsy was subsequently performed which confirmed the diagnosis of colorectal cancer. Upon seeing the biopsy report, the medical officer, Dr. Leung, went to speak with the patient. He found the patient asleep in her bed while Chung Man sat beside her.
The doctor informed Chung Man of the diagnosis. Looking concerned, he asked, “What can be done, doctor? How can we let her eat? She can’t keep anything down now.” Dr. Leung replied, “We’ll need to ask our surgery consultant to see your mother first before we know what treatment options would be best for her.”
Chung Man replied, “Ok. Doctor, please don’t tell my mother about the diagnosis. I don’t want to upset her and cause her to be overly anxious.”
Dr. Leung nodded. He had wondered whether the patient has any cognitive impairment as she seemed to have some trouble with her memory and wasn’t sure about her decision-making capacity anyway. He asked a geriatrics consultant to assess her cognitive status.
After a thorough evaluation, the geriatrics consultant thought Mrs. Kwok has mild cognitive impairment but felt that she has capacity to make medical decisions about treatments for the cancer. The geriatrician then asked the patient whether she would like to find out from the doctors about her condition. Mrs. Kwok shook her head. “No, I don’t need to know. You should just tell everything to my son.”
Then the geriatrician pressed on, “If you don’t know about your condition, then you wouldn’t be able to make good decisions about your care.” To that, Mrs. Kwok replied, “I want Chung Man to make all decisions for me. I’m too old. I don’t know very much and these medical things are too complicated for me. I trust my son would know what to do.”
The next day, the surgeon saw Mrs. Kwok and recommended surgical resection of the mass to the team. However, when Dr. Leung informed the surgeon that the patient does not know about her condition and prefers not to find out and defers all decision-making to her son, the surgeon was unwilling to comply. He responded, “How can we keep the truth from a competent individual, especially one who we may be doing surgery on? I do not feel comfortable cutting into the body of someone who did not agree to the surgery herself. What will happen when the patient wakes up and finds a big incision in the middle of her abdomen? We cannot lie to her!”
Dr. Leung is unsure whether or not to tell the patient the truth.
– Dr. Tse Chun Yan, Chairman, HA Clinical Ethics Committee (2005 to 2017)
The role of the family in decision-making in Chinese society
The case illustrated the importance of cultural factors in ethical dilemmas related to breaking bad news. Here, there was discordance between the view of the patient’s son and the surgeon. Mrs. Kwok’s son did not want the patient to know, in order to protect the patient from psychological harm. Such an attitude has been common in Chinese families, and ethicists have raised the concepts of protective truthfulness and family determination to justify deceiving a patient who wants to know the truth.
It is true that, in traditional Chinese culture, major decisions are often made by the whole family together. But this does not necessarily mean excluding the patient, and some have questioned whether the principle of non-maleficence can really override the principle of autonomy in such a situation. However, in this particular case, the view of Mrs. Kwok herself was in line with her son. She did not want to know, and wanted her son to make treatment decisions for her. In this case, can we simply follow the wish of the patient and her son?
Psychological harm to the patient
Firstly, let us look at psychological harm to a patient from truth disclosure in general. To balance the principles of non-maleficence and autonomy, we have to answer two questions:
- Can non-disclosure actually avoid psychological harm?
There is little evidence that terminally ill patients who are not told the truth die happily in blissful ignorance. When the patients guess the diagnosis and prognosis themselves, psychological harm will still occur. There could be extra harm to patients who guessed the diagnosis themselves. A conspiracy of silence usually results in a heightened state of fear, anxiety and confusion. It undermines trust towards the clinical team, and breaks down communication with family members. Patients are unable to obtain information they want to know, express emotions after guessing the diagnosis, obtain appropriate psychological and spiritual support, nor make suitable plans for their limited future with the family. Worse still, patients may pretend that they do not know in order to please family members.
- Are there ways to reduce the harms of truth disclosure?
Experience especially in palliative care has shown that sensitive, skilled communication coupled with good psychological, social and spiritual support can reduce the harm from breaking bad news.
This would mean that if the patient wants to know, the doctor should disclose the truth in the aforementioned manner rather than deceive the patient and let the patient guess the diagnosis himself/herself.
Nonetheless, we still need to address the culture issue. We should respect the desire for family involvement in the communication and decision-making process. The approach must also be individualized. Although recent studies have shown that most Chinese patients want to know the diagnosis, there could be a small number of patients who do not want to know. We need to sensitively explore what the patient already knows and how much he/she wants to know. Those who do not want to know may have denial or avoidance as a defense mechanism, and we should not break the defense mechanism without appropriate support. To respect the patient, we may withhold information, but we should not lie. We also need to reassess the situation as the disease progresses.
Legal reasons for disclosure
Secondly, we need to know whether there are legal reasons why disclosure has to be made. For a mentally competent patient, it is a legal requirement that a doctor must obtain consent from the patient before providing medical treatment. According to the Hong Kong Medical Council Code of Professional Conduct, consent is valid only if (a) it is given voluntarily, (b) the doctor has provided proper explanation, and (c) the patient properly understands. This implies that, in order to proceed with the operation, the patient has to be properly informed and to consent to the treatment herself. The decision cannot be delegated to the family. Then, does it mean that we should simply disregard the view of the patient and her son and disclose the bad news?
A pragmatic approach
In this particular situation, we can overcome the apparent dilemma by taking a step-by-step pragmatic approach.
- Step 1:
We start off by discussing with the son about whether surgery should be done for the patient. There should not be a confidentiality problem because this was the request from the competent patient herself. If the son agrees to surgery, we then move onto step 2.
- Step 2:
We then explain to the son sensitively that, legally, the patient has to be properly informed and consent to surgery before surgery can be done. We also explain that it is actually better to disclose the diagnosis and explain the operation to the patient sensitively, than to have the patient find out herself what is wrong and what has been done. If the son agrees, we then move onto step 3.
- Step 3:
We then explain to the patient sensitively that the doctor has followed her request to discuss with her son and her son has decided that surgery should be done for her condition. However, she needs to consent to the operation herself, and thus the doctor has to discuss with her directly. If the patient agrees, we then move onto step 4.
- Step 4:
We then break the bad news to the patient sensitively and discuss the treatment plan to obtain a proper consent. Appropriate support to the patient should be given along the way.
Going through these steps and with agreement from the son and the patient, the disclosure does not violate any ethical principles. If the son does not agree, or if the patient still does not want to discuss the illness, further discussions should involve a senior clinician with good knowledge and skills in breaking bad news. One should try to explore the concerns of the son and the patient, to assess any misconceptions, denial and anxiety, and to provide clarification and support. At the end, one should be able to succeed.