The devastating case of Alfie Evans, has brought renewed fervor to debates surrounding end-of-life care and what happens when parents' wishes are at odds with those of the child's medical team. The case struck a chord with me: on the one hand, I have close friends who shared tweets and photos that plucked at my heartstrings and made me wonder why Alfie's parents' wishes seemed so utterly ignored. On the other, I am married to a surgical resident whose responsibilities include caring for the sickest patients who may live but may have no life. I knew there had to be more to the story than what most news outlets and certainly most politicians and celebrities were wiling or able to share. In an effort to wade through the increasingly vitriolic and sensationalized rhetoric of this specific case, I read dozens of articles, blog posts, research papers, and even case studies to understand everything more fully. In addition to learning about Alfie Evans, I explored:
Not being a parent myself, I cannot possibly offer a meaningful opinion on the decisions that were made throughout Alfie Evans' life and medical care. I will not even try. Furthermore, I am not sufficiently well-versed in British medical law and the NHS to speak about the machinations that allowed his case to gain so much traction. Instead, what I'd like to offer is a glimpse into why physicians may suggest palliative care before a family is ready, using Alfie Evans' experience as a framework for the discussion. The miracle that is modern medical technology has made it possible to treat and cure ailments that were once fatal. Between diagnostic technology, pharmaceuticals, increasingly precise surgical tools and techniques, non-invasive treatments, and advanced therapies, people are living longer and often better lives. But these technologies are not wholly benign. Medical advancements can, indeed, prolong a life much better and longer than in the past, but it is not without cost to the patient. When a patient's illness begins to surpass the available technology or care, medical care can step into the realm of medical futility. Though the definitions for "medical futility" vary and the ethical ramifications make it hard to find consensus, medical scholar Griffin Trotter argues that medical futility occurs when:
In Alfie Evans' case, one of the many goals was to end or alleviate the seizures that were a major element of his degenerative illness. But medical specialists, including those who traveled from Italy, recognized the "complete futility" in those efforts, especially considering he had already lost an estimated 70% of his brain nerve fiber. To prolong life may mean the use of breathing and feeding tubes, IVs, and catheters that might never be removed. Through these measures, combined with numerous medications, the human body has the potential to be sustained for years. Life support can certainly be medically advantageous, especially when the body simply needs time to heal and recovery is a realistic possibility. But when recovery is unlikely while the body is kept alive, the patient may have little to no brain activity, responsiveness to stimuli, independent organ function, or autonomy. In fact, the Royal College of Paediatrics and Child Heath's Practical guidance for the management of palliative care on neonatal units is careful to mention that "life support technology is not in itself a curative treatment." Indeed, for Alfie Evans, even long-term ventilatory support was deemed unwise by both the physicians and Justice Hayden, whose judgement states: "It was entirely right that every reasonable option should be explored for Alfie. I am now confident that this has occurred. The continued provision of ventilation, in circumstances which I am persuaded is futile, now compromises Alfie’s future dignity and fails to respect his autonomy. I am satisfied that continued ventilatory support is no longer in Alfie’s best interest. This decision I appreciate will be devastating news to Alfie’s parents and family. I hope they will take the time to read this judgment and to reflect upon my analysis." Meanwhile, palliative care strives to identify a realistic future for the patient that puts their needs and desires at the forefront of the discussion. One of the major goals of palliative care is to help the family come to terms with what is best for the patient, even if it is at odds with what is best for the family. Despite common perceptions of palliative care, it is a wholistic approach that should incorporate "pain and symptom management [6,7], spiritual support [8], honoring cultural practices [5], understanding grief [9], and employing a breadth of bereavement activities and services [10,11]." In the best cases, the patient is able to make this decision for themselves, but often the burden lands on the family's shoulders. When it comes to very young patients, the decision can be even harder because there are simply so many unknowns about what potential medical breakthroughs the future might hold just over the horizon. But Dominic Wilkinson, a neonatologist and medical ethicist believes it is important to distinguish between end-of-life care and life-ending care: "Providing palliative care is not euthanasia. It is about providing “intensive caring” rather than intensive medical care. It does not end the child’s life. Rather, it supports the child, and the child’s family, for as long or as short as they remain with us." In the conclusion of an article from the academic journal Children entitled "Pediatric Palliative Care in Infants and Neonates," Brian S. Carter provides a succinct summary of the relationship between these two care approaches: The history of neonatology includes periods in which clinicians did not believe infants felt pain—now, pain assessment and management are part of standard care. Likewise, the provision of assisted ventilation, surgical interventions, and other technology at the neonatologist’s disposal have all increased neonatal survival, and improved patients’ quality of life through the NICU’s practicing developmentally supportive care. However, when technology becomes more burdensome than beneficial, when a newborn’s relational potential seems lost due to severe neurologic injury, or when being too premature and too small—or fraught with too many anomalies—confronts families and clinicians with the limits of medicine, [palliative care] should be at the ready (or already have been incorporated into a concurrent care model) to assist all stakeholders When I spoke with J about palliative care versus life support, I asked him what his biggest takeaway was from his experiences with patients, their families, life support, palliative care, and death. He said:
"If people really knew the costs - both emotional and financial - to keeping the body alive without the possibility of meaningful recovery, they generally won't choose the same path." He gave the example of a family who chooses life support for their dying grandfather and watches him slowly suffer on the machines. But, years later when faced with the same options for their grandmother, they recognize palliative care not just as a viable option but as what their family member would have really wanted. It seems to me that the crux of the debate over Alfie Evans' life and over life support vs. palliative care in general has to do with the definition of "life." Is it a physical state of being? Is it as simple as a beating heart? Must the brain be active? Or is it less quantitative than that; does it speak of potential? Of future ability, the capacity to achieve, the possibility of independent thought, speech, movement? Is it about merely surviving, or is it about thriving? From what I've learned from J and what my personal code of ethics tells me, a life confined to a bed, attached permanently to extracorporeal tubes and machines with no promise of waking or ever contributing meaningfully to the world is not a life worth living. To delay death is not the same as maintaining life, and we as interconnected, compassionate human beings must be considerate of this distinction. When we choose not to let someone go when every part of their body tells us it is time, are we truly practicing compassion? As J said throughout our discussions, "Are they being compassionate to the patient or to their own grieving hearts?" Nothing in medicine is quite as straightforward as we would like, especially for those of us who do not work in healthcare. And when medicine promises us so much, it is hard to admit when it has reached its limits. Life-saving measures can be messy, dangerous, and painful, but death is still the thing many fear the most. We must remember, though: there may be some fates worse than death, and our doctors are in the best place to know when medical care does more harm than good.
2 Comments
Michael
4/30/2018 12:18:23 am
Thank you for posting your and J’s thoughts/ experiences on this subject. I remember years back when the Terri Schiavo case ate up the media for weeks even months. I remember discussing the case at youth group, and everyone seemed to understand that palliative care was the best scenario in the situation, except I had a hard time wrapping my head around it. How could you give up hope? Why wouldn’t you wait for a miracle? What limits does love have?
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Michael, thank you so much for sharing your thoughts on the subject! I completely agree that the issue of right and wrong when life hangs in the balance is far more complicated than we'd ever like to believe, and that no one answer or approach will ever suffice for every case. What's more, I don't think we as a society will ever really come to a consensus on "what constitutes life" because of the myriad ways in which various religions, cultures, families, and individuals interpret it. To that end, my greatest hope is that we can encourage all decision-makers and stakeholders to be well-informed, compassionate, and open to dialogue. Thankfully, cases like Alfie Evans' are relatively rare because most medical teams, especially palliative care teams, are able to successfully find solutions with families without getting courts involved, solutions that appropriately combine the medical and personal needs of the patient with the values of the family.
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AuthorNashira is a music teacher and proud Small-Town Jew who, after surthriving six years in Brooklyn for her husband's surgical residency, is finally back in Wisconsin where she belongs! At least until the end of the two-year surgical fellowship, that is. It's a wild ride, and she's ready to tell you all about it! Archives
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