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“Finally hope had really run out for him. What had started as my moral distress gave me the strength to stand with the family as they had to make the decision to stop further medical interventions and let him pass as comfortably as possible.”
“At one point, the parents confided in me that they had set up a crib at home even as things were looking very grim. When I expressed this to the team on rounds, I was met with some backlash that we are not to take away parents hope or question their coping strategies. Being a newer NICU nurse, I struggled with constantly questioning my own optimism or lack-there-of. As the bedside nurses, we do not get the privilege of following these babies post discharge and witnessing the strides they can make at home with intense therapy. So, who was I to question whether this patient could have made a truly miraculous recovery?”
While discussing end-of-life care, it is not unheard of to hear someone mention the hopes of the family. On rounds, I often mention the work done by Chris Feudtner at CHOP surrounding the hopes of parents in end-of-life situations. Dr. Feudtner's work is important because it acknowledges several concerning aspects of hope that we will address in this post.
Parental hope plays a crucial role in how parents cope with their child's illness. Parents hope for many things when their child is ill; chief among those hopes is a hope for a cure. Such hopes are solid and concrete. While this may be a mechanism of dealing with the crisis at hand for the parents, this form of solid hope can also lead to decisions that are harmful in the determined pursuit of hope.
In response to their child's illness, parents' hopes may change depending on new information or the clinical course. The transition from a solid hope for a miracle will morph into smaller, discrete hopes. In this sense, hope acts as a liquid, water per Dr. Feudtner, as it fills the shape of the objects that hold it.
In the sense that hope is liquid and can morph, it follows that hope is not static. As we've already pointed out, parents' hopes change as their child's illness progresses but, perhaps not as drastically as one might envision. Generally, parental hope falls into one of nine domains. Notably, the nine domains stem from work in the pediatric palliative care literature. We'll discuss them next.
The first domain involves the hope for a miracle or a cure to the illness itself. Self-explanatory, this hope consists of the prospect of complete recovery or disappearance of the problem. Hopes regarding the length of life are also part of the nine domains. This domain focuses on the length of life itself and not so much on the quality of said life. Not surprisingly, quality of life is another domain. The quality-of-life domain is broad and involves concerns ranging from relationships with peers to the prospect for the parental definition of everyday life. In this sense, the parent hopes the child experiences the pleasures of every day, unencumbered life.
Domains of the physical body and medical care also exist—the physical body domains of hope involve the disease process's specifics. For example, if a parent hopes their child's BPD will improve with Atrovent, they hope within the physical domain. Interestingly, they are also expressing hope within the medical care domain. Notice, the hope is not that the Atrovent will cure the BPD, hence a miracle, only to alleviate the impact. Suppose a provider presents a new therapy to the parent, and the parents hope to gain more knowledge before starting the treatment. In that case, they are expressing hope in another domain, the domain of medical knowledge.
Pain concerns are crucial for parents but ought to be segregated from concerns for comfort. Hopes by parents to alleviate pain or pain from specific parts of their child's illness fall within the pain and suffering domain of hope. Hope for life fulfilled or for learning about something from the illness appeal to the hope domain of broader meaning. Included in this domain would be the parental hope to be present for invasive procedures as a means of supporting their child. Also broad in the included hopes, the future well-being domain appeals to the general hopes about the child's future. These are not specific hopes about the future, extubate after a course of steroids, but instead concerns about the child's future health overall.
When asked and identified, parents' hopes mainly fit into the following domains: quality of life, physical body, future well-being, and medical care. As the child's illness continues, parents may begin to demonstrate hopes in the domain of broader meaning. For example, this may represent the parent expressing hope that the healthcare team has learned from their child and that their child can go on, through their ordeal, to help others. Overtime, parents' hope domains do change but not necessarily as drastic as one would expect close to death.
Knowing this information is helpful because it allows the healthcare provider to check in with the family to assess their current hopes. Of course, a longing for a miracle or a cure will exist (although not as prevalent as one would expect), but healthcare providers must ascertain what else the parents hope to achieve. It is within this context that we discuss "killing hope" or "destroying hope." In reality, this is a misnomer and a fallacy.
I say this because if hope is viewed not as a large, all-encompassing, solid object but, instead, as a small series of desires, it becomes less daunting to suggest to parents that hope is lost. Healthcare providers who view parental hope as a singular entity, hoping for a cure, for example, will understandably loathe suggesting evidence to the contrary of the parents’ hope. This thought pattern is paternalistic, however. It is better to communicate the facts at hand and allow the family time to process said facts. After sufficient time has elapsed, the healthcare provider ought to check in with the family to ascertain what hopes remain or how their hopes have changed given these new data. The video below briefly discusses hope and fear.
References:
Feudtner C. The breadth of hopes. NEJM. 2009; 361(24)
Feudtner C. Responses from Palliative Care: Hope is like water. Perspectives in Biology and Medicine. 2014; 57(4)
Hill DL, et al. Changes in parental hopes for seriously ill children. Pediatrics. 2018;141(4)
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