Jim is a 29-year-old married dad of 3-year-old twin sons. He is dying of metastatic cancer of the colon. Understandably his wife, parents and siblings cannot accept that a cure is no longer an option and they are begging the whole team to do “something, anything to save Jim.” Jim has an ostomy and a gastric fistula. A surgical consult is requested, and the surgical resident informs the family that they are going to do a fistulagram. A fistulagram is an X-ray procedure that examines the blood flow within the fistula and checks for blood clots or other blockages. Carol, a wound care nurse who has been caring for Jim, is surprised to learn that the fistulagram is scheduled and wonders what the surgical team plans to do with the information they learn about the fistula. Clearly Jim is no longer a candidate for surgery. Carol wonders if the procedure, which will consume the patient’s scarce time and energy, is being done just to make the family feel like something is being done.
Provision 1.4 of the ANA Code of Ethics for Nurses (2015) makes clear that patients have the moral and legal right to determine what will be done with and to their own person. Patients are to be given accurate, complete and understandable information in a manner that facilitates an informed decision. Moreover they are to be assisted when weighing the benefits, burdens and available options in their treatment. The Code makes clear that nurses have an obligation to be familiar with and to understand the moral and legal rights of patients. “Nurses preserve, protect, and support those rights by assessing the patient’s understanding of the information presented and explaining the implications of all potential decisions” (p. 2). Provision 1.4 also notes that family acting as surrogate decision-makers for patients who lack capacity to make decisions are to make decisions “as the patient would, based upon the patient’s previously expressed wishes and known values” (p. 3).
Carol has had many conversations with Jim who understands that he is dying and whose priority is not to suffer needlessly. Jim can no longer make his own treatment decisions and is dependent on his wife and family. Carol is concerned his family’s love may be interfering with their ability to respect his wishes.
Carol talks with another wound care nurse who knows Jim and they are both concerned about subjecting Jim to needless procedures. Both believe the standard of care at this point is to keep the wound clean and dry and to focus exclusively on palliative goals. Jim is already so uncomfortable that he has been resistant to position changes and has a pressure ulcer on his sacrum. Both wound care nurses believe that if the family truly understood what was going on, they would authorize transitioning to purely palliative goals. Carol read an article in the New York Times recently where a physician urged patients to ask four simple questions when doctors are proposing interventions.
First, what difference will it make? Will the test results change our approach to treatment? Second, how much improvement in terms of prolongation of life, reduction in the risk of a … problem is the treatment actually going to make? Third, how likely and how severe are the side effects? And fourth, is the hospital a teaching hospital? [One] study found that mortality was higher overall at nonteaching hospitals (Emanuel, 2015, 7).
Carol and her colleague are sure that not only will the fistulagram not make a difference in Jim’s ultimate outcome nor increase his quality of life and number of days, but it will actually rob him of needed energy and create burdens without any anticipated benefits. Carol decides to call for a family meeting with the oncology attending and surgery consultant present. She invites someone from the ethics department to facilitate the meeting and preps both physicians about her concerns. Carol is relieved when the family authorizes transitioning to purely palliative goals.
Carol talks with a colleague who reminds her that wound care nurses are not typically at the table when decisions like this get made. “If the family is adamant about wanting x, y or z, I usually get on board unless I believe it will greatly increase the patient’s pain and suffering. Even then, unless I’ve established good rapport with the physician my voice is unlikely to be heard.” Carol’s colleague cautions her that escalating conflict at a time when the patient is going to die anyway is unlikely to do any good. “Let Jim’s family have the peace that they did everything to save him,” her colleague said. Carol is uncomfortable with this advice because she knows that the Code demands more of her and the reason she became a nurse was to help patients just like Jim. •
Source: American Nurses Association. (2015).
Code of Ethics for Nurses with Interpretive Statements. Silver Spring, MD: Author.
Emanuel, E. (November 22, 2015). Are good doctors bad for your health?
The New York Times, p.7.