Sep 15, 2020
A medical team empowers a family to love fully by allowing them to feed their child.
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Alonzo was a 10-year-old boy with a recurrent refractory brain tumor whose disease progressed through multiple therapies over many years. When no additional cancer-directed options remained, Alonzo was admitted to the hospital for symptom management as he approached the end of his life. Although Alonzo was unresponsive and posturing, his family continued to hope desperately for a miracle. As they kept vigil around the bedside of his frail body, praying and waiting, they gradually began to notice, and then fixate on, how the sharp angle of his bones protruded more with each passing day.
Alonzo's mother believed fervently that his body needed nutrition. She understood that Alonzo was dying, that modern medicine had failed to keep the cancer from ravaging his brain, yet, as a mother, she continued to feel a profound desire and duty to nourish her child. She couldn't bear the idea that he might be feeling hungry, while unable to ask for food. She felt that, if he were to die of starvation as opposed to cancer, she would have failed him as a mother. She also continued to pray for God to create a miracle to heal Alonzo, and she believed that a healthy, nourished body was essential to host this miracle.
Each day, our medical team spent hours debating how best to partner with Alonzo's family to align his medical management with their deeply held goals and beliefs. We worried about the provision of enteral nutrition, as Alonzo's gut was impaired in the context of his disease progression, placing him at significant risk for aspiration. We discussed the sizable risks related to the placement of a nasogastric tube to initiate enteral feeds with the low likelihood of long-term benefit. His mother expressed understanding, yet her broken heart steered her to feed him soup in secrecy later that evening. Alonzo choked, turned blue, and developed respiratory distress. It took several days to restabilize him. His mother was traumatized and racked by guilt, and yet she continued to speak of nothing but his need for nourishment.
Fearful of oral and gastric feeds, she turned her energy to the prospect of intravenous sustenance. She begged us to consider total parenteral nutrition. As the days passed, we gently explained how the acute risks of volume overload and hepatic dysfunction outweighed the negligible long-term benefits. She expressed understanding, but with tears brimming, she pleaded for us to find some way to give him something. Just a little fat, sugar, and protein. His brittle, translucent skin was breaking down at each bony protrusion, and she believed that even a small amount of nourishment might help to heal his festering wounds.
By this time, our medical team was emotionally overwhelmed. Upon admission, Alonzo's prognosis was days to a week or two. By the eighth week, the inpatient team was incredulous and exhausted. We spent multiple hours each day at the bedside with Alonzo's mother, bearing witness to her grief, validating her wish to be a good parent, affirming her spiritual belief in the possibility of a divine miracle, reiterating the limitations of medical interventions, and sharing in her wish that Alonzo not suffer.
Our medical team gathered to debrief. Oncologists, nurses, palliative care clinicians, nutritionists, chaplains. We all shared a common desire to partner with Alonzo's despairing family without causing undue harm to our frail, voiceless patient. We talked about Alonzo's mother's love, how she never left his side, her warm hands gently caressing his emaciated limbs. Our nutritionist wondered aloud, might there be a safe approach for the topical application of essential fatty acids? We called our pharmacy, and they had not previously dispensed topical oils to patients.
We then turned to the literature, and found several citations that suggested possible benefits associated with the topical application of oil, with no evidence of inherent risk. One study suggested that topical administration of essential fatty acids might lessen the progression of pressure ulcers in individuals with poor nutritional status. A few published manuscripts theorized that the absorption of essential fatty acids through topical application was feasible, predicated on case reports and theories describing the reversal of essential fatty acid deficiencies with cutaneous application of the essential fat linoleic acid in pediatric patients ranging from neonates to adolescents. A randomized controlled trial looked at transcutaneous absorption of massaged oil in 120 newborns in a tertiary care neonatal intensive care unit, demonstrating a significant increase in serum essential fatty acid profiles in the cohort that received topical safflower oil, with no appreciable adverse effects.
Yet, even more compelling than the potential to offer a gentle nutritional boost was the possibility of empowering Alonzo's family with a hands-on intervention that could manifest, both literally and figuratively, their love and desire to nourish him. In the context of his family's profound spiritual distress, we also wondered whether coupling two forms of love, nutrition and touch, might offer comfort to the caregivers suffering at his bedside. Prospective evaluation of a systematic intervention to promote physical contact between a caregiver and a seriously ill child in the pediatric intensive care unit has been shown to improve caregiver spiritual well-being. In partnering with his family, perhaps we could minister to their spiritual distress, as well.
Our team also became encouraged by reading the growing body of data cataloging the benefits of therapeutic touch for infants and children. We learned that premature infants who receive massage at the bedside gain weight faster and discharge days earlier than those who do not receive therapeutic touch. Within pediatric oncology populations, evidence suggests that the provision of simple massage techniques, either by trained health care staff or by parents who receive training from staff, is feasible and effective for improving anxiety, sleep fatigue, and overall quality of life. Of note, in addition to positively affecting caregiver distress, therapeutic touch may also mitigate patients' suffering, as evidenced by reductions in analgesic administration.
Emboldened by these data, and united by our shared mission to support this child and his family, our oncology team sprang into action. A team member drove to a local grocery store and purchased a bottle of safflower oil. A pharmacist officially answered the oil into our formulary for the bedside nurse to dispense. The inpatient team placed an order for one teaspoon of safflower oil gently massaged into the patient's skin by caregiver four times per day.
At the bedside, our oncology and palliative care teams explained to Alonzo's family that the topical absorption of oil would not cause Alonzo to gain weight. We discussed transparently that, although a small amount of essential fatty acids would be absorbed, this was extremely unlikely to replete his nutritional stores or prolong his life. Through tears, his mother expressed understanding. A team member trained in pediatric massage demonstrated and taught his mother a series of simple, safe massage techniques to provide comfort at the bedside. We encouraged her to nourish Alonzo with her bare hands, to caress his arms and legs gently with the safflower oil.
In synergy with the topical oil, we also started intravenous fluids with 5% dextrose at a few milliliters per hour, plus a tiny daily dose of 5% albumin. We shared frankly with the family that the small amounts of sugar and protein would not yield weight gain. However, the total amount of fluid was low, mitigating the risk of worsening secretions or pulmonary edema. With unified consensus, we gave Alonzo just a little fat, sugar, and protein, less so to nourish Alonzo's cachectic frame, and more to nourish the minds and hearts of those who surrounded his bedside with love.
Alonzo's family expressed deep gratitude for these offerings of sustenance. The excruciating daily conversations, which previously had fixated on feeds with circular dialogue, evolved into forward-looking discussions about end of life, grief, and resilience. Alonzo's mother assumed primary responsibility for the application of the oil, creating a formality around the process that culminated in loving caresses and gentle massage.
For a hands-on parent, this single intervention carried profound therapeutic power. It allowed his mother to fulfill her duty to feed her child, thereby affirming her desire to remain a good parent, even as she watched her child die. It empowered his family to provide tender, devoted touch as part of their loved one's care, thereby gifting a small sense of control and contribution in the respective faces of perceived powerlessness and uselessness.
It eased his mother's spiritual distress, as she felt successful in her advocacy to nurture Alonzo's corporeal host, as she prayed for a divine miracle. It created a deep therapeutic alliance between the medical team and the family that felt heard and honored, thereby smoothing the path for future difficult discussions as imminent end of life approached. And it eased the distress experienced by a clinical team that felt helpless in the face of extreme caregiver suffering, ultimately bringing us together through a unified mission to honor the family's goals while providing high-quality and holistic medical care.
24 days after we offered nourishment, Alonzo died, peacefully, surrounded by his loving family, his frail body gleaming with soft swirls of oil. His mother cried, holding his hand, her face pressed against his. When she lifted her eyes, tears falling, she reached for our hands. "Thank you for listening. Thank you for sustaining us."
Hippocrates, revered father of medicine, allegedly said, "let food be thy medicine, and medicine be thy food." Just as we administered medications to ease Alonzo's physical suffering as his disease progressed, so did we offer nourishment. And for his family, just a little fat, sugar, and protein was the medicine that yielded the most profound comfort.
As our team debriefed this difficult case, we grasped a salient truth-- to nourish is to love. By allowing his family to feed their child, we empowered them to love fully. Alonzo's story helped our team to realize that addressing nutrition at the end of life is paramount. We have a responsibility to be proactive in discussing nourishment when a patient is dying so as to better support families who feel helpless to nurture their loved ones.
We acknowledge that traditional approaches for nutritional support through enteral nasogastric feeds or total parenteral nutrition are not inherently inappropriate for patients who are at the end of life. Our team believes that it is essential to avoid drawing arbitrary lines in the sand that automatically negate the use of low-volume nasogastric feeds or total parenteral nutrition.
Rather, we advocate for the consideration of nutritional interventions on a case-by-case basis, weighing the risks and benefits for each unique patient and family. In this case, the clinical team believed that even small volumes of nasogastric feeds and total parenteral nutrition carried significant risk for incurring harm, without hope for benefit. Initiation of topical essential fatty acids, in synergy with low-volume intravenous dextrose and albumin, however, brought Alonzo's family substantial comfort, with no evidence of harm incurred.
Since the culmination of this difficult case, our team has offered the option of administration of topical essential fatty acids and massage training to multiple other families who expressed a desire to nourish their children in the context of approaching end of life. For each family, this simple, non-invasive intervention has provided comfort, without appreciable detrimental sequelae. We believe that the interdisciplinary team should explore the nutritional values and goals of every family at the bedside of a dying patient, and all caregivers who express distress or uncertainty should be given an opportunity to learn about topical essential fatty acids and nurturing touch as comforting options.
In the context of families perceived to be difficult, clinicians often worry that offering any intervention will result in a slippery slope of demands for additional escalation of care. In our experience, however, we have observed the opposite. These simple and relatively benign interventions lessen tension, facilitate trust and partnership, and create space for dialogue about other goals as death approaches.
Cost and accessibility are also important considerations. Compared with enteral or parenteral fats, the price for topical oil is negligible, and options are available at most local grocery stores. Practically, our team typically offers safflower oil, which contains 60% to 70% linoleic acid and has shown potential for topical absorptive qualities. On the basis of prior studied regimens, we recommend the administration of 5 mL topically to extremities through light, gentle massage four times per day, as desired by family. However, sunflower, sesame, soybean, and corn oil each contain linoleic acid, and might be used interchangeably, depending on which oils are most readily available.
Among our team and with our families, we acknowledge that topical essential fatty acids and a trickle of dextrose and albumin provide negligible nutritional content if one's metric for efficacy centers on weight gain or repletion of nutritive stores. However, we also recognize that, in these difficult cases, the sum, nourishment, can be so much greater than its individual parts-- a little bit of fat, sugar, and protein.
Beyond the concrete value of food, we saw the power of nourishment to support families by gifting them an invaluable sense of control within a situation that is otherwise uncontrollable. Within the quintessentially human belief that food is love, we discovered a unique opportunity to offer a family in crisis a few concrete tools with which to honor and affirm their roles and responsibilities as primary caretakers and good parents.
By listening and aligning our medical management with the values and goals most important to the family, we identified a path to build trust, ease regret, and accompany them along the painful anticipatory grief journey. Through this partnership, we found a way to alleviate stress for both the family and clinical staff. Of importance, we also discovered an intervention that bridged multiple medical disciplines, bringing unity and collaboration as sustenance for clinicians practicing each day within a poignant space.
When Alonzo's mother carefully reported the safflower oil into her hands, she did so with reverence, determination, and purpose. When she laid her palms on his broken skin, she brought together nutrition, touch, and love in a single, simple, therapeutic intervention. Empowered with the knowledge that she held in her own hands, the ability to provide comfort, she nourished her child and herself, and by doing so, she sustained us all.
Welcome to Cancer Stories: The Art of Oncology narrative series. I'm Lidia Schapira your host. And with me today is Dr. Erica Kaye, a pediatric oncologist and hospice and palliative medicine physician and researcher at St. Jude Children's Research Hospital. Welcome, Erica.
Thank you so much for having me today.
It's great to have you, and love to chat with you about this new piece that you just published in Art of Oncology, which addresses the need to provide nourishment to children who are sort of in the ultimate phases of their illness. Tell us a little bit about the inspiration for this piece.
Thank you. So this piece was inspired by a real-life patient for whom our pediatric oncology and hospice and palliative medicine team had the privilege of caring. He was hospitalized at the end of his life, and died very slowly over the course of multiple weeks in our inpatient unit. And during that process, his family struggled profoundly with their inability to feed him.
And we began to think quite a bit about what it means to nourish a child, and how nourishment takes many forms, not just corporeal, and not simply food going into the mouth and through the gut, but the many ways that parents love and support and nourish their child and themselves spiritually and emotionally, and the ways in which teams are deeply affected by parents as they struggle in that space. And so we decided to share the lessons that we learned from this complicated and very difficult case at the end of life, and how we found beautiful compromises to help promote the importance and value of nourishing a child even throughout the dying process, what that looked like and what they taught us.
In the essay and now, you just talked about the effect this has on the team. In the essay, you mentioned that you all thought this child would die, and then by the eighth week, you say the medical team was both incredulous and exhausted. And it sounds like you needed to find sort of a creative or resourceful way of sort of opening up and aligning again with the family, and that you did this by listening to what the mother was saying, was asking, and by giving her the opportunity to give the child a little fat, and then you provided the sugar and protein. Tell us a little bit about that nourishment, and that idea of sort of the gifts that were exchanged from your team to the family, and then the family back to the team.
Thank you. That's such a thoughtful question. And this family, and in particular the child's mama, struggled very deeply with her inability to feed her child as she sat minute by minute at the bedside watching the child slowly die. And I think, in the sort of paradigm of a good parents narrative, how we internalize our role as, quote unquote, "good parents," to a certain degree, the concept of food as love is quite integral to that good parent narrative.
And although she fully understood, from a medical standpoint, why giving enteral or parenteral nutrition would likely cause more harm than benefit to her child, the inability to give him fat and sugar and protein created tremendous existential, emotional, and spiritual distress for her. And as we listened and validated and affirmed her wishes and goals and fears, we, as an interdisciplinary team, began to try to think creatively about how we could honor the needs that she had to fulfill her role as a good parent, while also not introducing undue harm or suffering to the patient.
And through some research and creativity and exploration of limited existing literature, we decided to empirically trial teaching compassionate touch through gentle massage in conjunction with the application of topical essential fatty acids. And our thought process was that not only could we create a space for his family to offer a small amount of nutrition, the fat that was so important to them, but we could couple that with empowering them to be that good parent, that caregiver at the bedside, participating in the offering of not only sustenance through fat, but sustenance through touch and through love.
I think what was most profound as we partnered with the family in this process was seeing their palpable relief, and how much their trust in the team grew through this experience. And the therapeutic alliance that was engendered through these simple offerings was very meaningful and profound, and I think created a remarkable positive feedback cycle. The more they trusted us, the more they listened to our recommendations.
And I think it's really important to note that, often, we on the medical side fear a slippery slope hypothesis, that the more we offer, the more the family will ask for. And that has not been our clinical experience. I think when we listen carefully and thoughtfully, with an eye towards partnering genuinely and authentically with families, it does not create unreasonable requests for more. And I think it instead creates trust and love and support bidirectionally. And that was a very meaningful lesson, I think, that our clinical team learned.
Yes, and to the reader, Erica, it comes across as the suffering of caregivers, both the professional caregivers, the members of your team, and the family caregivers, the informal caregivers, it was reduced in sync. So what helped the family also helped the team. And there's something very beautiful on an existential level of thinking about that, sort of the power of connecting. You connected with each other, and then with the child. And then, as a reader, what is really impactful is that the child is slowly dying for these eight weeks that feel so exhausting, and then, within 24 hours of relieving this caregiver distress, it's as if everybody can let go and the child dies. Did your team have a chance to think about that?
Absolutely. So quick point to clarify, I'd say within hours of beginning the interventions, there was palpable relief at the bedside, and all the conversations evolved in an organic and very meaningful way. The child actually lived another 24 days after initiation of those interventions, which, on some level, was an ongoing difficulty for both the family and the staff because a prolonged dying process is very emotional.
But on many levels, those 24 days were such a gift to the family and the staff. There was an opportunity for intentional and thoughtful legacy-building and memory-making, and there was provision of a significant amount of psychosocial supports throughout that process. And I think because we were able to relieve the stress intrinsic to feeling powerless and unable to nurture the child, we were able to focus instead on meaning making, in all of its many, varied forms. And I think that was incredibly useful, not just for family, but for the staff to see and participate in.
So wearing your research hat now, if you're looking at this and think about ways of studying it, I have a couple of questions. One is, is your team studying it? And the other is why you chose to tell this story as a story to this readership, in order to perhaps help to start a dialogue or-- you know, what were you thinking? Why present it as a story?
Thank you. Those are both incredibly important questions and considerations. The former I think is very interesting. I have been reticent to design a research study to the gold standard that I think is deserving for answering important and unknown research questions, in the sense that I believe strongly in the meaning making inherent to this offering and am quite reluctant.
I feel like it is borderline ethically fraught to withhold the opportunity to consider this intervention. I think it's really important to talk about nutrition and nourishment on many levels with the families of all children at the end of life. And so I feel quite conflicted about the idea of offering this intervention to some and withholding it from others. And think it's a very deeply personal decision, what feels meaningful to a family and what doesn't, and would like to empower families to make the choices that most align with their goals and their belief systems.
That said, I think it would be very interesting to try to study the value added by this intervention, even if retroactively, through interviews and focus groups with families whose children have died, and ask them, you know, what conversations around nutrition, if any, were had? What was meaningful to you? What do you wish had been discussed? What are your thoughts about this type of intervention? Might it have been helpful to you, or if this or a similar intervention were offered, what was helpful and why? And so that's something that I have been thinking about, and that we will likely be moving towards in the future.
To respond to your latter question, I am quite biased as a personal believer in narrative medicine. I think that the narrative, the patient's story holds such tremendous power, not only in allowing for self-catharsis and self-reflection, but also in the transference of meaningful lessons learned and in advocacy, in helping to empower others to learn and teach and move the needle at their respective institutions. And so we were quite intentional about our decision to share the lessons that we learned through the lens of the stories that impacted us. And in this particular case, the one patient who really got us thinking deeply about this issue.
I think there's a lot of emotional valence intrinsic to the sharing of a true story, and that emotional valence allows us to connect with and remember lessons learned in ways that, often, objective didactic does not. And so I believe that this format is very meaningful for all of those reasons, and I also think that it reaches a wide and diverse target audience of readers within the field of oncology, all of whom may interpret and synthesize this information in unique and personal ways, and then, I hope, take it with them to share with their colleagues and to help inform the clinical experiences that they go on to have in the future.
Well, Erica, that has been so enlightening. I look forward to reading some of that qualitative research that you'll probably do by interviewing families. I love the idea that there's an almost sacred aspect of the experience that perhaps we should always strive to improve, but shouldn't tinker with. And one of those has to do with the expression of that incredible emotional connection between a parent and a dying child. And so we should definitely support it in any way we can.
And then how we can strengthen our own community of thoughtful oncologists to be creative, to be resourceful when they are faced with a situation that, at some level, may almost appear to be a conflict, but if you sort of peel back all the layers through narrative, through listening, you actually can find that you can align with the family around a common goal. And that makes everybody better, and certainly relieves caregiver distress, in addition to family suffering. So thank you so much for your beautiful writing, for your advocacy, and for sharing it with the readers of Art of Oncology.
Thank you so much. It is an honor to be able to share these stories and, in doing so, honor the patients and families for whom we care. Thank you.
Thank you so much.
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