Amelia’s Rivera’s story is a tragic one and one that is sadly not that uncommon.
The medically fragile and vulnerable are all at risk when it comes to who gets a transplant and who does not. There are guidelines and ethics involved in medical decisions and sometimes it does not seem fair when decisions like the recent one at CHOP are made based on mental disability.
On the surface, this decision seems unfair and the conversation with the parents seems cold and unprofessional.
From the distraught parents’ point of view the doctors, nurses and social workers were unfeeling and certainly not the professionals that that these parents had put their faith in, to save their daughter.
As a social worker and nurse I have had some serious heart rendering discussions with families. Experience has taught me to listen very carefully to patients and families…they want to be heard and understood. I try to support them to my best ability and I am their advocate while also working within the hospital’s policies and procedures and decision making. This is sometimes extremely difficult.
In this case…if Amelia’s parents want to continue to pursue a transplant for her…it would be my responsibility to encourage them to seek out another pediatric center that performs transplants…I would then explain to them that acceptance of a donor is not automatic and a pediatric donor is more complicated than an adult donor.
Amelia’s parents needed to experience empathy from the transplant team at CHOP…they needed to feel that their feelings were respected and understood and they need to be treated like the concerned and loving parents that they are.
The transplant team at CHOP should disclose how decisions like this are made…this is certainly not the first decision of this kind at a transplant center and it will not be the last. These types of decisions are not made lightly by checking a box on a sheet of paper…they are agonized over by the medical staff and guided by medical ethics.
The truth today is that some lives are considered more valuable than others…we see this with the abortion issue and life sustaining treatments for the fragile elderly to name only two vulnerable patient populations.
My heart goes out to Amelia’s parents and family…they are trying to save her life and to them her life is valuable…she is their precious child.
Unfortunately, transplant decisions are not made on feelings and love…they are made on facts and medical ethics…
The delivery of these decisions are not easy…in this case it seems that those involved did not empathically deliver bad news to these loving parents …they did not respect the fact that Amelia’s parents were hoping for a life sustaining procedure for their little girl…which was not going to happen at CHOP.
Amelia Rivera and medical morality – Guest Voices – The Washington Post.