Amanda Trujillo and Informed Choices in Advance Illness

Amanda Trujillo, RN

Would you want Amanda Trujillo to be your nurse?

Amanda Trujillo is a master’s-prepared nurse who was working the night shift at Banner Del E. Webb Medical Center in Arizona in early 2011. One of her patients was a critically ill 60 year old woman who had been scheduled for evaluation for a transplant.

According to Amanda, she assessed the woman’s knowledge of her illness and says that the patient didn’t understand her disease, the lab tests, medications, or the self-care that would be needed to recover from a liver transplant for which she was being evaluated. By Amanda’s assessment, no one had ever discussed hospice care with her, even though a consulting physician had noted in the chart that the only two options for the patient were transplant or hospice. Amanda believed that the attending physician’s failure to discuss this option with the patient was an ethical breach of the concept of informed consent.

Amanda had worked on a transplant unit for five years at another hospital and was used to having conversations with patients about preparing for the evaluation and post-transplant self-management.  Amanda says that, after talking with the night charge nurse, she accessed the current hospital’s educational materials and prepared a binder of information that she reviewed with the patient. When the patient said that she wanted to go home to be with her father and think about what she wanted, Amanda made a referral for a hospice case management consultation as she had done before without any objections from physicians or the hospital administration. She documented everything in the patient’s record and reported her ethical concerns to the charge nurse.

According to Amanda, she was fired by the hospital for her advocacy on behalf of the patient after the transplant service’s physician expressed his fury at the change in the patient’s decision. Amanda was told that had interfered with the patient’s surgery and that it was not in her scope of practice to make a referral to hospice case management for a consultation without the approval or order of the physician in charge of the patient’s case. The hospital filed a complaint with the Arizona State Board for Nursing.  Amanda, as a single mother, found herself unemployed and an “untouchable” in the eyes of other employers.

This story is told only through Amanda’s eyes. I spoke with her several weeks ago after receiving a viral email she sent to publicize her plight before the state board told her lawyer that Amanda should stop speaking publicly about her case. Initially, the board was to make a decision about her case around January 24^th, but it instead required Amanda to undergo a psychiatric evaluation, which she told me she was happy to do. The board’s decision is still pending.

The Institute of Medicine’s report on The Future of Nursing: Leading Change, Advancing Health, recommends that all health professionals practice to the full extent of their education and training. While most of the attention to implement this recommendation has been focused on advanced practice nurses, Amanda’s case illustrates the challenges for staff nurses to do so. No where is this more important than when working with patients with advanced illness.

We know that patients who are faced with a terminal illness are woefully uninformed about their options. In fact, payers are more likely to pay for costly, aggressive care in intensive care units than for supportive hospice care. [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1282187/].

Research has documented that terminally ill patients are seldom fully informed of their options for care [http://www.ahrq.gov/research/endliferia/endria.htm].  It’s not something that many physicians want to discuss with patients. The patient may not know that the “new treatment” has been shown to extend a patient’s life only by 8 weeks but is accompanied by horrendous adverse effects that will seriously compromise his quality of life. So what is the nurse’s role in advocating for fully informed consent?

While some might argue that Amanda Trujillo’s responsibility was to share her assessment with the lead physician on the case rather than taking it upon herself to remedy the situation, she firmly believed it was within her scope of practice and a fundamental responsibility of the nurse as patient advocate.  I do, too. But it won’t be easy for physicians, hospital administrators, state boards for nursing, and even our fellow nurses to break out of traditional roles for nurses and patients. Nonetheless, we must make fully informed consent about treatment and care options a standard for all practicing health professionals.

If I have an advanced illness, I want nurses like Amanda Trujillo taking care of me. She understands that it is the patient’s right to be fully informed and the nurse’s role to speak up when that right is violated.