Communicating with Health Care Providers
My grandmother has cancer and refuses to discuss the fact that she hasn’t responded to treatment. She tells her physician she’s doing fine and refuses to deal with her situation. How can I deal with that? Should I contact her physician?

It’s common that people with progressive illnesses want to avoid certain facts. It’s especially common if they’re not responding to treatment or if their health is declining. In your grandmother’s case she may be ignoring her situation because she can’t cope, or she may be saying what she thinks her health care providers want to hear.

It can be difficult and frustrating to support a loved one who isn’t facing reality. It’s common to feel helpless; you don’t want to take away hope, but you do want to deal with the issues that come up when someone is terminally ill. It’s best to be upfront with your grandmother. This is a good approach generally, but in this case there are additional reasons.

A physician has an obligation to be open with a patient about all aspects of care. It’s essential to establishing trust between the physician and patient, which is the basis for care. Physicians feel uncomfortable having conversations with family or friends behind a patient’s back. The physician is in an awkward spot if there’s new information from a source that can’t be revealed. If your grandmother senses this has happened, it could erode the trust she needs to have in her physician. Of course, if she faces a physical risk somehow, then this needs to be considered.

Trust is important also between a person who’s ill and family and friends. A person with a terminal illness is vulnerable and needs to feel safe. Like others who are ill, your grandmother needs independence, dignity, and a role in the family as much as possible. If your grandmother senses that people are talking to her physician without telling her, it can diminish her dignity, her respect for others, and decrease her sense of control over her own life. Such conversations are meant to be confidential, but one way or another they usually end up getting back to the person who’s ill. Lost trust is not easily regained.

You may be worried that by not being upfront with her physician your grandmother is missing out on important treatment options. Be assured that if your grandmother has significant health issues they will be evident anyway. Such issues are hard to hide or ignore. Her physician likely will be aware of them, and aware also of the common desire to put up a good front. Your grandmother’s physician may not want to address this explicitly, and may be trying to find a way to gently let your grandmother know that her health is deteriorating in the midst of few treatment options.

It’s important to be open with your grandmother. Tell her you’re concerned that she’s not telling her physician what’s really happening. Consider asking her permission to come along when she visits her physician, so that you can ask questions. Alternatively, you can ask permission to phone the physician yourself. The physician would then check back with your grandmother.

Your grandmother has to approach her situation in her own way, and that may change with time. Still, it can be hard on you and others around her. Consider telling her how you’re feeling. If you’re open, it may help her open up also.