What Can be Done

My article is making reference to patients that have no voice

What Can be Done

As I was receiving report, I felt this sudden sadness in my heart. I looked through the window at my patient while he lay lifeless in bed. I saw what appeared to be a toddler on the ventilator, multiple IV lines and medications infusing. W.L. was a 29 year old patient with a history of Cerebral Palsy now with pneumonia and respiratory failure. The question we need to ask is "what do we do?"

W.L.'s body was so contorted and contracted that the doctor was unable to orally intubate, so he nasally intubated. W.L.'s head was contracted to the side, so a tracheostomy was out of the question. His lung status indicated extubation was probably not something that we could accomplish safely. The problem with this case, is that the patient is a ward of the state and the POA feels she cannot make the decision to withdraw and let him pass away peacefully. Papers were filed in the courts to make him a DNR and a possible withdrawal of lifesaving measures, but in the meantime, what can be done for this patient?

The on-call team member from the ethics committee was paged previously. It took a long while to get a return call. When we finally received the call back, the team member explained that she needed an official consult placed in epic and assisted me in placing one. She advised she would review the chart carefully and take the information to the committee for review. She was unable to confirm if the committee would choose to intervene with our pressing situation. She also was unable to give me an exact time frame for when the committee would make a decision. In the meantime, as nurses, we have to take care of him the best that we can, while our patient is suffering right before our eyes for 12 hours straight.

Shift after shift, nurses and doctors continue to care for W.L. whole heartedly as we count the passing days without any reply from the ethics committee. We felt our care was futile. Morally, we knew it was not right to make W.L. suffer being in such a state while legally we could not do anything but continue care for our suffering patient. W.L.'s condition progressively decline a little more every day and evidently his little heart gave out. In most cases like this, as healthcare givers, our hands are tied. We tried our hardest to help W.L. with the little options we were given. Many times we do not believe, ethically, in how some patients are made to suffer; however, despite of our moral beliefs or how we feel, we have to continue to care for our patients to the best of our ability as nurses and doctors.

As bedside caregivers, we realize that many people simply do not have enough medical knowledge to understand how grave the patient's condition is or how severely the suffering is. The right of the patient includes the right to self-determination. As nurses we are also required to respect the ethics value of autonomy for every patient. If the patient is unable to make decisions on their own behalf, their legal guardian, or POA, is appointed to exercise that right. In the same way, a diabetic patient can select a food choice that could cause harm, a legal representative can make a choice that causes a patient harm. This is, in my experience, the most difficult dilemma in caretaking. It is difficult to know the right thing to do and be forced to do the opposite. It is also necessary for patients to maintain the right to choose for themselves.

1
Up Vote Up Vote ×
tmcintyre1234

About tmcintyre1234

RN

1 Article   1 Post

Share this post

Share on other sites

Thank You for this article! In the book, Heal Thy Nurse by Jennifer L Carr, there is a wonderful chapter on this premise entitled, The Power of Choice. She writes, "Once we embrace the power of choice-for everyone-we no longer have the need to convince everyone that we are right...puts us in direct control of our world and what we create for ourselves."

Up Vote Up Vote ×

This is a wonderful article! I found myself going back and remembering my own version of the patient you described above, with a similar history. My patient had a severe anoxic brain injury at the age of two. When I cared for him he was in his 20's, a ward of the state, trached, vent-dependent, gtube, and so severely contracted his spine was in a C shape and his tiny legs had rotated out of their hip sockets. He did not even blink. It was painful to watch his suffering and to imagine that he had lived that way for more than 20 years.

What we could do as nurses wss treat him as respectfully as possible during our shifts, bathe him, talk to him, and let him know he was safe and not alone. I am unsure if he heard or sensed us, but on some level hopefully his spirit was touched.

What finally happened is the ethics board went in front of a judge and they pleaded their case, and it was decided to make him a DNR and not pursue aggressive treatment the next time he became sick. There was a next time, and when I heard he had passed away I was happy and relieved for him, that he was finally at peace.

And then because of him, and others like him in my care in a pediatric hospital, I pursued hospice nursing instead. Because so many of my patients were variations of the one described above, and I just could not do it anymore. I love hospice nursing. I make people comfortable. I support them as their bodies go through the natural stage of dying. I work with both children and adults (mostly adults) and I have never regretted changing specialties.

Than you again for sharing the story of this patient. May he provoke thought and may we honor his journey by trying to be the best advocates for our patients even as we are caught in the middle of a system that is often not fair or humane.

Up Vote Up Vote ×
+ Add a Comment