The Right NOT to Know

by Joanna Smith on Mar 21, 2011

I heard from a colleague the other day about a healthcare advocate who had been advised that she had a legal and ethical responsibility to tell a client information, such as a diagnosis, even if the client or the client’s family did not want that to happen.  The question was, did I feel this was an ethical and legal way to act?  It is a complex issue worth looking at more carefully.

One of the values in healthcare advocacy that is most important is client autonomy, meaning that the client has the right to know or not know medical information about themselves. In some family systems, members believe that information is, more properly “held” by a senior family member and given (or not given) to someone as is deemed appropriate by the family.

When I begin to work with a client and their family, one of the questions I ask is what they believe about information; i.e. if  there is a life-threatening diagnosis, who should know? I ask these questions because I need to know how the family system handles potentially difficult information.  Once I understand their system, then my ethical obligation is to follow it, even if it does not agree with what I might wish would happen.  Personally, I believe that a client can have more autonomy if they have information.  That statement is a reflection of my beliefs, value system and perhaps culture; that belief, however, is only mine and it may not be shared by some of my clients. Every client is different; some people want to know, and others do not.

My goal as a healthcare advocate is to discover and honor whatever system my client and family use and most closely follow the wishes of my client.  I have found, in doing this work for many years, that some clients simply do not want to know “bad news”; they may even identify a family member that medical results should be given to; they would rely on the family member to tell them–or not–believing that this system works best.  As a healthcare advocate, I am comfortable working with my clients and families this way because I believe that it is the only ethical way to act.  I know of no legal mandate anywhere in the U.S. that says clients MUST be told when they do not wish it.  I would consider it a breach of ethics to force information on them that they have been clear they do not want.  There is a right NOT to know.

There are special situations with children that may arise, simply because they are minors and medical information is given to their parents who decide what and when to tell their child.  Some children have shown an amazing capacity to grapple with complex medical diagnoses and life-threatening illnesses, however.  The world of pediatric medicine recognizes this and many clinicians encourage the child’s participation, as much as they are able, based on their age and capacity to understand and the parent(s) permission.  In this situation, the legal guardian(s) receives the information and may elect to disclose some or none or all of the information to their child.  My role as a healthcare advocate here is to assist the parents in figuring out if and when to disclose this information to their child and continue to respect their beliefs, values and culture.

The ultimate goal is to understand what my client wishes and follow those wishes:  that is the ethical path a healthcare advocate needs to follow.