One of the ethical issues I get consulted about most frequently is when family members of a patient request that certain information be withheld from the patient, and in my experience it most often centers around cancer diagnoses. A typical scenario involves an elderly patient admitted to hospital for something like a GI bleed and tests reveal a malignancy.
Sometimes the cancer is found to be the cause of the symptoms for which the patient was admitted while other times it is an incidental finding – an unexpected discovery made while exploring unrelated symptoms. At some point the family intercepts the physician and requests that he or she not tell the patient about the diagnosis. The only way this request can be honoured is if the entire health care team honours it, which makes them all complicit in the deception. This can be a very uncomfortable position for health care providers but there is a strategy that can be employed to resolve the issue.
What makes this situation uncomfortable for health care providers? On one hand, the patient’s right to self-determination (grounded in the ethical principle of respect for autonomy) has become so strongly entrenched in our health care system that health care providers immediately recognize that they are being asked to do something that is in direct violation of a clear ethical principle. Their initial reaction will often be something like, “But the patient has a right to know!” At the same time, maintaining a therapeutic alliance with the patient’s family is important because an unhealthy relationship with the patient’s family can impede quality of care for the patient and it also makes for a very stressful working environment for providers.
Moreover, family members (as substitute decision makers) do have the right to make many health care decisions on behalf of patients, so health care providers often feel pressured to honour the request out of respect for the substitute decision maker’s authority. Add to this the fact that the family’s pleas may be very emotional in nature, making it harder for health care providers to go against their wishes.
All that said, this is one issue where one ethical principle does take clear priority over the others. All health care providers are primarily obligated to promote the interests of their patients over the interests of others. That means your obligations to your patient take priority over your obligations to the patient’s family members.
The bottom line is the patient does have a right to know his or her diagnosis, for two main ethical reasons: 1) it is the patient’s information, not anyone else’s, so the patient is entitled to that information; and 2) there will always be additional decisions to make, even if the diagnosis is terminal, so the patient needs to be informed of his or her diagnosis and prognosis if he or she is going to make those decisions (e.g., consent for further tests or procedures or consent for palliative care). Additionally, there are a number of other reasons that support disclosure: 1) it prevents the members of the health care team from having to lie to or deceive the patient; 2) research shows that most patients want to be informed about their diagnosis and prognosis; and 3) research also shows that most patients already suspect their diagnosis, or will find out at some point anyway, so open disclosure helps to maintain a trusting therapeutic relationship.
Does this mean that health care providers should just ignore the family’s pleas and disclose the diagnosis to the patient? No, and not just for the reasons mentioned above. First, the patient’s family members will know the patient better than their health care providers do and may have a legitimate concern about how harmful the information might be to the patient. Second, there are often cultural factors at play in these situations: some cultural groups do not subscribe to the individualistic concept of patient autonomy that dominates Western health care and in those cultures it is often standard practice for family members to take over all decision making for a sick patient. Third, although most patients do want to know about their diagnosis some of them will not.
A reliable strategy that can be used to resolve these issues by finding a compromise between the competing values is what the late Benjamin Freedman called “offering truth.” The strategy can be summed up in a few steps:
1) Validate the family’s concerns but explain to them that the patient has a right to know if he or she wants to know. Explain that the conversation will be handled sensitively and compassionately. Reassure them that the diagnosis will not be forced upon the patient.
2) Ask the patient if she wants you to explain the test results to her or would she prefer you speak with her family. If she says she wants to know, ask how much detail she wants. Ensure the patient’s family members are present for support (unless the patient doesn’t want them present) but avoid using family as translators.
3) If the patient wants to know, explain the diagnosis slowly and clearly. If there is concern specifically about the use of the word “cancer”, use words like “growth” or “tumor” instead. Ensure you give the patient ample opportunity to ask questions.
4) Wherever possible explain the options and next steps. Never leave the patient with the impression that there is nothing else to do.
One final thought: this particular issue can often be prevented by discussing decision making preferences with the patient early in the hospitalization. We should always be taking our cues from the patient whenever possible. The best way to avoid this uncomfortable situation is to avoid the tendency to automatically communicate with the family instead of the patient.