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.
Healthcare Advocates work with people of all ages. While Healthcare Liaison does work with seniors, we also provide services to infants and children and their families, young adults, and middle-aged adults: everyone needs help with healthcare! It’s not just about insurance, although that is confusing enough in itself: it’s about the complex decisions that arise in medical care.
An example happened a few months ago when a parent of a six month old called me. The labor and delivery had been difficult, and the baby was born with serious birth defects. It is the most anguishing outcome for any parent: the healthy baby they expected was not the baby who was born. Instead they have a child who will need lifelong care and has an uncertain future. How can I help this family?
Working with infants and children and their families presents unique challenges. Families are grappling with guilt and fear that come with having a child with complex medical problems. Parents do not expect to have a seriously ill child. There are sometimes difficult decision to make about what is the best care and where can it be obtained–and who will pay for it.
With the family mentioned above, I identified several problems:
* the parents felt responsible for their child’s condition (“If only we’d done something different during the pregnancy, this wouldn’t have happened”)
* the medical team met frequently with the family, but was not repeating the information enough times for the parents to “get” it. (Health educators say people generally need to hear information a minimum of three times on three separate occasions to be able to incorporate it and use it in a productive way).
* the medical decisions the family needed to make were complex: did they want their baby revived if he stopped breathing? What about using a machine to help him breath?
* the parents weren’t utilizing all of their support systems to assist them with decision-making
* the other children in the family were bewildered by the events
What I did to help:
* talked with the medical team to let them know the parents confusion and encouraged individual members of the team to talk with the parents rather than the whole group at once.
* Helped the parents identify family and friends that could be supportive in helping them make medical decisions; contacted the pastor at their church so he could provide support
* Sat down with the family to explain in simple terms what the medical team was saying, translating medical language into sentences they could easily understand. Answered the other children’s questions with answers they could understand
* Walked them through the decision-making process for the medical issues they needed to reach consensus on
* Met with the parents and the medical team to assist the baby’s parents in expressing their wishes
I think one of the most important things that I did for this family was to sit and listen as they talked. I could be a sounding board and a third party to help them talk with each other and reach a decision that grew from an understanding of their choices.
As interim President of the National Association of Healthcare Advocacy Consultants (NAHAC) , I am pleased to announce the First Annual NAHAC Conference. It will be held at the University of California, Berkeley on November 14th and 15th 2009 at the Clark Kerr Campus. This two day event features talented and skilled practitioners in the field of Healthcare Advocacy. The event is open to the public as well as Association members.
To view the conference brochure and register for the Conference go here.
To receive the 25% Conference discount for members of NAHAC, please join the Association and complete your membership payment before registering and paying for the Conference event.
We look forward to seeing you in Berkeley!