King’s College London Student Clinical Ethics Committee case discussion: A family requests that their grandmother,who does not speak English,is not informed of her terminal diagnosis

The role of cultural norms

What was initially striking to the SCEC was the way in which the patient appeared to be marginalised in the decision-making process – decisions were made for her and about her in stark contrast to the aims of patient-centred care and respect for patient autonomy. Most of the SCEC members found this behaviour challenging, even if the family genuinely considered that it was best if the patient was not harmed by knowledge of her terminal diagnosis in light of their cultural norms.

SCEC members had a rather animated discussion about the role of culture in healthcare decision making. Which cultural norms should be respected – those of the country in which the healthcare is provided or those of the patient, and indeed is the issue of culture even relevant? Some dismissed the idea of culture completely and brandished it as an arbitrary label that allows transfer of responsibility from the doctor to the family. Doctors, like many people, are not experts in cultural differences, what they are, what they mean and how to deal with them. As such they can appear as a frightening presence, fraught with complications and dangers should they be ignored (intentionally or not). Cultural norms may thus seem impenetrable where they are simply offered and accepted as fact, without any further exploration. One student suggested that perhaps culture is relevant to a point where it is not harmful to the patient. ¹ A final subset of students noted that we cannot assume that the patient’s views were even linked to culture at all. This prompted concern that the doctor may have misinterpreted the situation as a cultural issue, when it may not have been. The idea of culture and language being tied together in the same context was also questionable. Students remarked that doctors can presume too much about patients and that this can affect the way patients are treated. It seemed to some in the SCEC that healthcare professionals may hide behind cultural sensitivity because of uncertainty rather than truly considering the relevance of culture in particular contexts.

The issue of culture was questioned on two levels. Firstly, the assumption that the patient would want her care and treatment to follow the cultural norms articulated by her family; that she would want them to take decisions for her and that she would not want to know of her terminal diagnosis. Should these norms be accepted by the treating doctor without further questioning and knowledge, just because those of that community assert that is how things are done? Even if the cultural norms are objectively ascertained, this patient may not wish to adhere to those norms, and only by probing, and thus potentially revealing sensitive information, would that be apparent. Secondly, respect for culture gives rise to a lack of consistency in the treatment of this patient in comparison with other cases. Involvement of patients in healthcare decision making and respect for their informed competent decisions is a cornerstone of medical practice. In their guidance Consent: patients and doctors making decisions together (2008), the General Medical Council reiterates the importance of working in partnership with patients, listening to patients and respecting their views about their health and discussing with them their diagnosis, prognosis and treatment. It also notes that doctors must share with patients the information they want or need in order to make decisions. The difficulty in this case is that the patient’s family says she would not want to know this information. This may go beyond any specific cultural context – many families would consider that distressing information should not be revealed to their loved one towards the end of her life because it would do more harm than good. Nevertheless if competent, a patient will need to know about treatment options and their implications in order to give informed consent.

How far to accede to the views of this family about what is best for the patient

Although it did not seem that a capacity assessment was carried out, the case referrer reported that, given the patient’s state of health and the communication barrier, the power of decision making had shifted to her extended family. Students wondered whether the family came into the hospital with the expectation that they were the key decision makers. ²

The third principle of the Mental Capacity Act 2005 (MCA) provides that ‘a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success’. Members of the SCEC were clear that the doctor’s duty is to both promote patient autonomy and be an advocate for their patient, and that she should be the first priority for all the medical professionals involved in her care. In this case, they wondered whether this had in fact been achieved. Nevertheless, the SCEC members recognised the difficulty of achieving these aims in the context of the forceful views expressed by the family and the disruptive family dynamic. It seemed that the patient was completely excluded from the decision-making process without any attempts to find out what she understood of her condition and her views and preferences and that the doctor prioritised the decisions of the family without consideration of the separate interests of the patient. The unambiguous view of the SCEC was that the doctor should have made arrangements for a translator to speak to the patient, regardless of the family’s wishes. As the patient spoke a dialect of Cantonese for which translation services may not have been readily available, this would present a practical difficulty. However, it was unclear whether the treating team had taken any steps to find a translator. The SCEC noted that the use of a translator may have promoted the patient’s autonomy in respect of her care and treatment and the case would then have proceeded down an entirely different course. The virtues of honesty and integrity were undermined by expediency and the wish to avoid conflict.

However, this is a family in distress and excluding their involvement and views could cause a schism in the last days of the patient’s life. The MCA provides that where a patient lacks capacity and decisions are made in her best interests the patient’s past and present wishes and feelings, values and beliefs must be considered, and the decision maker (here, the doctor) must consult with anyone engaged in caring for the person or interested in her welfare, as to what would be in the person’s best interests (s4). If the doctor felt that direct access to the patient’s wishes was not possible, then it would be to the family that he would turn. This was understood by the SCEC but questions remained regarding the impossibility of direct contact with the patient and whether the family, or at least the main spokespeople of the family, properly represented the patient’s views/wishes, the wider family view about what was in her best interests or indeed the relevant cultural norms. ³ We also recognised the complex family dynamics and that not all family members may agree with the route of non-disclosure.

The patient died after a short period of time without pain relief or the initiation of treatment. The SCEC wondered what would have happened if the patient had survived for a longer period. If this situation had continued for weeks or months the lack of treatment/pain relief would then have become a relevant factor in further care decisions. SCEC members felt there would be a deception if the woman was treated without any knowledge of the reasons for, or involvement in, choices made.

‘To deceive a patient or even evade a real fact of certain death is to torture the intelligence of those who will know, even if it be at the very last, that they could trust no-one.’ ⁴

Of course she may have exercised her autonomous choice not to know the full details, but without any significant attempt to determine this one basic fact, this cannot be presumed. In any event, despite the language barrier, the SCEC felt that it was likely that the patient would have some understanding of what was happening through non-verbal clues and the behaviour of those around her.

Should the patient have been informed of her diagnosis?

All SCEC members agreed that in such circumstances a doctor should explore with the patient the extent of her knowledge and what she would want to know. Perhaps the doctor attempted to provide the patient with information but was unsuccessful. On a practical level, it may have been difficult for the doctor to discuss such a complex and sensitive issue with the patient and her family in a hospital due to its lack of privacy and the doctor’s time constraints. Even so, it appears that the doctor did not seriously pursue the idea of finding a suitable interpreter once any attempts to communicate directly with the patient failed. The SCEC recognised the harm of providing information about the diagnosis to a frail and bewildered patient. The doctor may have explored the reasons why the family wished to withhold information from the patient, perhaps because they thought this would cause her to be overwhelmed and depressed at the end of her life, but their concerns could have been addressed and a compromise reached, so that patient care would not have been affected. We also wondered if the doctor’s response would have been different if the patient was younger, say 45 years, of a generation that gave greater weight to respect for autonomy, or if she was from a Western culture, and, most pertinently perhaps, English-speaking.