Not All Dying Patients Are the Same
Sunday, November 20, 2022 at 8:00AM A recent publication in the SWJPCCS by Jones-Adamczyk and Mayer (1) points out how Arizona’s Jesse’s law prevents the appropriate discontinuation of unwanted interventions in dying hospice patients. The road to hell is paved with good intentions and Jesse’s Law is an excellent example. As pointed out by Jones-Adamczyk and Mayer, Jesse’s law should have addressed unreasonable surrogates instead of preventing all surrogates from taking an action that is often in the best interest of a loved one. Jesse’s law is named for Jesse Ramirez who suffered traumatic brain injury in a rollover accident. Traumatic brain injury patients are different from many end-of life patients such as those dying from terminal cancer. Prognosis from traumatic brain injury can be difficult to predict especially early in its course (2). In contrast, prognosis of patients with widely metastatic cancer late in its course generally is not. Identifying futile care requires a great deal of knowledge of medicine and the culture, spirituality and personal preferences of the patient, best determined by a good-faith discussion between the patient’s surrogate and the care givers. The authors of Jesse's law failed to make exceptions for patients who do not want futile interventions such as feeding tubes when it is inappropriate. They are the real culprits in creating chaos in the care of terminal patients near death.
The example of a patient cited by Ms. Jones-Adamczyk and Mayer illustrates the need to modify Jesse’s law. But what should be done in the meantime by patients, surrogate decision makers and ICU teams since they cannot remove a feeding tube without a court order under current Arizona law? Patients should prepare their advanced directives with specific mention of feeding tubes and artificial nutrition. Unfortunately, there seems little alternative for surrogates and ICU teams. Until the law is changed, they will need to spend time trying to convince a court to allow feeding tube removal unless they are willing to act outside the law risking their career, livelihood and even jail time.
The real problem with Jesse’s law is that it removes the most knowledgeable and best decision makers and substitutes the courts. This is part of the trend of those unknowledgeable in healthcare stepping into clinical decision-making (3). This erodes trust in physicians and nurses, may lead to criminalizing appropriate end-of-life care, or worse, prolong the suffering of the dying patient. Arizona patients and care givers deserve better.
Richard A. Robbins MD
Editor, SWJPCCS
References
- Jones-Adamczyk AL, Mayer PA. Unintended Consequence of Jesse’s Law in Arizona Critical Care Medicine. Southwest J Pulm Crit Care Sleep. 2022;25(5):83-87. [CrossRef]
- Steyerberg EW, Mushkudiani N, Perel P, et al. Predicting outcome after traumatic brain injury: development and international validation of prognostic scores based on admission characteristics. PLoS Med. 2008 Aug 5;5(8):e165; discussion e165. [CrossRef] [PubMed]
- Robeznieks A. How the AMA fights to keep politics out of the exam room. AMA ASSN News. July 19, 2022. Available at: https://www.ama-assn.org/news-leadership-viewpoints/authors-news-leadership-viewpoints/andis-robeznieks (accessed 11/18/22).