Last spring, Banner Health took action against an Arizona nurse who counseled, even encouraged, a prospective transplant patient about hospice care. With 6 years of nursing under her belt, the nurse (whom I’ve declined to name), identifies herself as a nurse specializing in cardiology, geriatrics, and end of life/palliative care. In the wake of her dismissal from the hospital, and loss of her nursing license [edit: as of 2/3/2012 the Arizona State Nursing Board has listed the nurse’s license as active; under investigation], thanks to blogs and online communities throwing her support, she’s now been dubbed a patient advocate. As of January 2012, at the request of the Arizona State Board of Nursing, she’s scheduled to undergo a psychiatric evaluation.
In the nurse’s own words: “I had discovered (patient) had no clue about what they were about to participate in when they agreed to get a major invasive surgery. When I properly educated the patient using the allowed materials by my employer they became upset that the physician never explained details of the surgery or what had to be done after the surgery (complex lifetime daily self care).”
In a typical medical practice, or hospital – it would be the doctor or surgeon, the one with the medical degree, who would be responsible for educating the patient about surgery. Nurses are trained, and hopefully well trained. They are not, however doctors, or surgeons. While nurses, good ones anyway, forge relationships with patients, it is not the place of a nurse, with 6 years of experience, or 60 years of experience, to counsel a patient into hospice care, especially when the patient is scared or is lacking information about surgery. The surgeon is qualified to, and prepared to, explain thoroughly, as many times as necessary, any medical procedure a patient is undergoing. A surgeon will typically explain the surgery, and after care needs to the patient as well as the patient’s family.
Also worth noting is that there is procedure in place for initiating Hospice care. I am not affiliated with Banner Health, however, as is standard in most hospitals across the country, hospice care is not initiated by a nurse, and certainly not without the knowledge of the attending physician. I’ve been disillusioned by the huge outpouring of support the nurse has received. Not only do I have personal experience (that I share below) that’s shaped my opinion on this matter, I take offense to the supporters who have adopted the attitude that this nurse was fired because she upset the attending physician, and threatened the dollars attached to a transplant procedure.
Several years ago a friend of mine, Rod, was dying. His liver was failing him. I remember seeing him the day before his transplant. At first I didn’t recognize him – he was stooped over, wearing baggy clothes, and only when he looked up and spoke to me did I recognize him.
In the years I knew Rod, he had gone from being a patient, to the handyman who worked on my house, to a friend. But now I looked at this man, and my clinical instinct told me he didn’t have but days left to live.
Rod’s words to his wife that day were, “I think I’m done.” In his early 40’s, the man with a smile who would do anything for you, couldn’t face life anymore. His jaundice skin was so itchy that he would jump in the swimming pool in the middle of the night (winter, no heater) – just to get some relief. His ankles were four times their normal size from the edema. His abdomen, normally flat, was puffed out because of all the ascites (water from a failing liver) in his belly. He had no energy, and could only work a few hours a week.
The next day Rod’s pager went off. Mayo Clinic had a liver.
Four years later, Rod is working full time. No jaundice, no swelling, no itching, legs and belly are back to normal. He has some issues with the medicines he takes for rejection – but he has now seen one son finish high school, and the other one is as tall as he is.
When I think of people who have end-stage liver disease, I always think about Rod. I asked him what would have happened if someone had pushed him to hospice the day before the pager went off, or even a few months before that—he said he would have had it not been for the excellent education he received from Mayo, although at his low times he would have taken hospice.
HOSPICE OVER TRANSPLANT HOW A NURSE CAN STEER YOU
This brings us to the case of a registered nurse, who on her shift this last year “educated” a patient about end of life care when they were waiting for a transplant. Some hail the nurse as one who stands up and informs people about end of life care. She said “I was caring for a dying patient whom I had discovered had no clue about what they were about to participate in when they agreed to get a major invasive surgery.”
Pre-transplant liver patients are some of the most ill patients you can see. They tend to go from one crisis to the next, be it from bleeding, or infection, or jaundice, or liver failure. Because of the scarce supply of livers, these patients are literally brought from the precipice of death. Often prior to the transplant operation they need other operations, or procedures, just to bridge the gap. Imagine your worst illness, where you first thought you were going to die, then wished you would—imagine living like that for months. It takes grit, determination, and a supportive family, and a transplant team to help rally you.
So when this transplant patient would come into the hospital, in a crisis, but not yet ready for a transplant – and feeling horrible here comes this nurse – telling her that this was just the start, and giving pamphlets while telling her there is another way—death with dignity in a hospice.
The nurse isn’t a transplant educator, because she would know that you don’t take a patient who is critically ill and educate them about transplant. You wait until they are healthy, and have better mentation. This was a “temp” nurse, filling in on this floor- self described as “specializing in cardiology, geriatrics, and end of live/palliative care.”
The next day when the surgeon came to see the patient, the surgeon became upset, and asked that the nurse be relieved.
Here is what this nurse did wrong:
(a) She isn’t a transplant educator, and therefore does not know about this procedure
(b) The materials she used which she describes as “When I properly educated the patient using the allowed materials by my employer they became upset that the physician never explained details of the surgery or what had to be done after surgery (complex lifetime daily self care).”un The educational materials she referred to are summary materials, an adjunct. A small piece of what the patient will learn in the process of receiving a transplant.
(c) She says “I was doing my job and protecting the patient’s rights to full disclosure about the surgery and their right to choose their course of care.” This was not the motive of this nurse, in my opinion. There is a right time to educate a patient, and a wrong time to. When the patient is very ill, but there is a procedure that will bridge them until they can obtain a transplant, is not the time. There is a whole group of classes transplant patients are REQUIRED to take, in the evaluation process for the new liver. It is not up to this nurse, at this time to do this. Her job was to watch over the patient that shift, not to steer this patient to hospice.
(d) This nurse also says nothing about going up the chain of command in the nursing structure. She didn’t talk to her charge nurse, she didn’t talk to the supervising nurse on duty, nor did she talk to the nurse administrator on duty. This nurse took it upon herself to do this task. This is rogue behavior. Had she gone up the chain of command she might have been educated – if she were to allow to be educated – about the educational process with transplant patients.
(e) There is always a role for end-of-life teaching and counseling. The best time to have those discussions is with a person who is feeling as well as they can, given a bad situation. The worst time to have those discussions is when the patient is feeling so ill that the thought of death is a fine release. She justifies her actions by her anecdotes of patients who “lying in hospital beds for weeks on end, suffering debilitating pain, air hunger, bed sores, muscle wasting, and their dignity is not respected – as their family members stood by horrified.”
(f) This nurse then brought this to the public view – for sympathy, for political support, and does not admit to any wrong. She will get sympathy, and she frames the argument in that manner – but this points out that she believes she has nothing to learn, and the sole reason she was dismissed was because of greed, not because she can learn something from this.
(g) What this is NOT: this is not the case of a surgeon planning to do a transplant on a patient who is completely unaware of the circumstances. As much as this nurse publicly attempts to frame the discussion in that manner, that simply does not happen with transplant patients. Nor is this the case of a nurse providing a patient with informed consent about a procedure. I’m a surgeon- while I nurse may obtain “consent” a piece of paper we ask patients to sign – if the patient has any questions, in over 20 years of surgery, the nurse always calls the surgeon to answer them. A nurse cannot give informed consent – the surgeon can. It is not uncommon for patients, the day of or before to have more questions – we, as surgeons are obligated and willing to answer them.
In surgery, we have four pillars of ethics: Autonomy, Nonmaleficience, beneficence, and justice.
Autonomy is that as a physician we have ethical obligations, and expectations to our patients. People are truly free to choose their treatment but must have the information that is required to make that choice. Because of innovation and research, it is the surgeon’s obligation. In the case of transplants there are protocols, classes, a whole range of education that has been proven, over many years, to work well for education. The educational process has been tested, to the point where some public school systems have adopted the methods of this education. One cannot get educated from a busy nurse on a floor who has a self-described bias to hospice, and provides some cursory reading material.
Autonomy is not a nurse, without a background in the field, steering a patient to hospice.
Nonmaleficience is that we do not use our skill and knowledge to harm a patient. There is risk associated with every surgical procedure, but that risk isn’t “doing harm” unless that procedure has NO HOPE of benefit. Transplants have a well-proven track record – over 85% at one year versus certain death without it. Hospice has 0% one-year survival.
Beneficence is our duty to act in the best interests of the patient. We must always intervene for the comfort and well being of the patient. Here is the hitch – it is not up to the surgeon to determine this. It is judged by the patient. It is our goal to ease pain and suffering, it is not our goal to cause it. While this nurse publicly frames it so she can lay claim to beneficence – she cannot.
Justice is the final pillar of ethics. This is how we decide how organs are dispensed. This is how we go to fight for the rights of our patients and not our self-interests. This is why I’m blogging about this act of what I consider a rogue nurse.
The Arizona State Nursing board has asked that this nurse undergo a psychiatric evaluation. The state has an obligation to know if this is the act of an illiterate nurse, or someone who will tend to rogue behavior beyond the bounds of the profession. The board is rightfully concerned that she brought this into public, and instead of this nurse learning how transplant education works, this nurse vows to change the system so any nurse can steer a patient from transplant to hospice. Where is the line between steering a patient to hospice and taking it into your own hands – there is one, and does this nurse know that line?
There is some misplaced sympathy for this nurse. She states her license was revoked – it wasn’t she was simply referred to the board of nursing- an appropriate reaction. She thinks it is that referral that doesn’t get her a position – it isn’t, it was her action that proves it. She thinks she was in the right- when she was so wrong.
Some sympathy comes from those who think it was the surgeon and the hospital who maintained the goal of more dollars from procedures. Funny thing about Banner Hospitals, they are considered, by many of my peer physicians, the most doctor-unfriendly and nurse-friendly hospital systems. For the record, I am not on staff at any Banner Hospital. And to be more clear, many of my friends are surgeons, and I know of no surgeon who wants to operate on someone who is terminally ill and without hope.
The perception that we surgeons are simply in it to “cut” and for “greed” is a sad perception that we need to correct. Until then, of my many colleagues, never have I met one who would do such a thing.
On a Happier Note:
Today I am happy that my friend Rod is four years out with his new liver. I am happy that Rod didn’t have that nurse talking him into hospice care. Rod was as sick as any of them, had been hospitalized a dozen or more times before his transplant, and had many surgeries prior to the transplant. Rod didn’t have an easy transplant, but he survived. I am happy that Rod saw me become a father, and that he has become the uncle of my son. I know that Rod’s wife, his parents, his sons, and other friend are happy that Rod got his liver I’m glad Rod is here and is not someone we say “boy, Rod would have loved to see my son,” – as we put flowers on his grave. Because you know what- if Rod had met that nurse, at the right time- he would have probably gone for hospice. It would not have been death with dignity that would have been an unnecessary execution.
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Dr. Terry Simpson
Dr. Terry Simpson received his undergraduate and graduate degrees from the University of Chicago where he spent several years in the Kovler Viral Oncology laboratories doing genetic engineering. He found he liked people more than petri dishes, and went to medical school. Dr. Simpson, a weight loss surgeon is an advocate of culinary medicine. The first surgeon to become certified in Culinary Medicine, he believes teaching people to improve their health through their food and in their kitchen. On the other side of the world, he has been a leading advocate of changing health care to make it more "relationship based," and his efforts awarded his team the Malcolm Baldrige award for healthcare in 2011 for the NUKA system of care in Alaska and in 2013 Dr Simpson won the National Indian Health Board Area Impact Award. A frequent contributor to media outlets discussing health related topics and advances in medicine, he is also a proud dad, husband, author, cook, and surgeon “in that order.” For media inquiries, please visit www.terrysimpson.com.