Question

Analyze a discussion you’ve had with a health provider it might be a doctor, nurse, dentist or anyone who attempted to explain something about a loved one’s health condition. How effective was that communication? Did you come away with a good understanding of what you were told? Or if not, what do you think the problem might have been?

Alternatively, if you are a health care provider or a training to become one, you can describe a discussion you’ve had with a patient how effective you felt you were in communicating the information you were sharing, and what part of the patient played in communicating with you in that interaction.

Answer 1

My niece was diagnosed with nephrotic syndrome at the age of 3 years . She did not respond to Prednisolone and was continuously loosing proteins. None of her parents or other family members are from medical field. After about 3 months, her body swelled too much that she was not able to open her eyes and went in acute renal injury and was admitted in emergency in one of the pioneer medical institute in India.

There she was diagnosed as Steroid Resistent Nephrotic Syndrome (SRNS) and was put on second line treatment - Cyclosporine. For 3 years, until she was on this medicine, she did well.

After discontinuation of drug again she started with proteinuria. Now she is on Rituximab injections, which also she received nearly 8 injections, and recently 1 week back on appointment consulting team of doctors told, we will stop this injection and will she". While actually her absolute counts were in the range already conveyed by them, when she should be given a dose of Rituximab injection.

During this entire experience we came across many health care providers.

In my own experience, not only do doctors tend to avoid discussions about future course of disease and its prognosis, but I too am equally silent. Whenever parents of the child ask treating doctor about her recovery, to my knowledge no one — not the doctor or any other health care provider, or me — ever mentioned that, “She is not doing well, or she may progress to end stage renal disease or there are not much of treatment options left.”

There are plenty of reasons not to enter such sensitive discussions with parents.

• We don’t want to upset them.
• We assume that they would ask for details, if they wanted them.
• We think they probably know and understand the consequence if she is not improving with medications, what does that mean. So we respectfully step back from painful conversations.
• Doctors may assume that family members are talking about these issues and family members may assume the same about doctors.

The subject is so sensitive, so uncomfortable, that everyone is happy to avoid it or assign it to someone else.