Adam is 10 years old.
He has had serious gastrointestinal and breathing issues related to cystic fibrosis that have required periods of hospitalization since he was born. This most recent admission is for pancreatitis. Adam is friendly and easygoing. He has excellent manners and he loves massage.
My “Hi, Adam. Would you like a massage today?” is always greeted by an enthusiastic, “Yes, please!” He drops what he’s doing and hurls himself, prone, onto his bed. He places the pillow over his head “for dark and calm.” When the session is over, he pops up and says, “Thank you very much! Have a good day.”
Adam is small. He looks like he is 6, not 10, but if you speak to Adam like he’s 6, things will not go well. I have been in the room when another provider entered, placed her hands on her knees and squatted next to Adam. “A-da-am,” she sing-songed, “You have to eat more yummy food. Your nurse said you’re not drinking your milkshakes.” She waggled a bottle of Ensure (not a milkshake) in his face. “I need you to drink all of this milkshake before your nurse comes back or she’ll be sad, OK?” Adam stared at her in stony silence. She gave me an exaggerated conspiratorial wink and then left the room. Adam pushed the bottle of Ensure onto the floor.
A week later I was in Adam’s room when a different provider came in. “Hey, Adam,” she said casually, “How are you doing? I don’t want to interrupt your massage, but it looks like you didn’t eat a lot of your breakfast today. I need you to drink at least half of one of those Ensures. What do you think?” Adam sighed and nodded noncommittally.
“Is there a different flavor I can get for you that’s better than the chocolate one?” the provider asked.
“No,” he said, “The chocolate is OK. Thank you.”
She left the room. Adam took a sip of the Ensure and grimaced. “Is that stuff gross?” I asked.
“Yeah, but it’s OK. She knows how to ask like I’m a person.”1
And that’s what these patients need most—to be seen and heard. According to Marcia Levetown and the Committee on Bioethics, “Communication is the most common ‘procedure’ in medicine. [It] is the foundation of the therapeutic relationship.”2 No one likes to be treated “like a child,” not even children—and especially not hospitalized children.
Like healthy kids, sick kids enjoy silliness and play. They enjoy a funny face or a fart joke as much as the next person. But “silly” and “condescending” are not the same thing. Being young does not mean you don’t know about your environment, about the people around you, about your own body. Being young doesn’t mean you don’t have opinions. It doesn’t mean you are invisible. Young people, even children, can participate in their own care.
Whose Massage Is This Anyway?
Maya is happy to see the massage therapist because she’s another source of entertainment. Maya’s mom is happy to see the massage therapist because sometimes Maya falls asleep during her massage.
Maya is 2. She has leukemia. She is a robust kid who, despite intense chemotherapy and several serious infections, is very active and alert. Maya is a grabber and what we jokingly call “a flight risk.” Maya wants out of her crib. IVs, tubes, telemetry lines, oxygen monitors, and blood pressure cuffs cannot hold her back. She wants to hold anything she sees. She wants to figure out how to snap her fingers and how to blow a raspberry. What she does not want is to rest.
Another thing she does not want is to be touched without explanation and permission. This goes for massage, as well as any other intervention. I have learned this from Maya herself and also by watching her nurses.
“Hey, Maya! S’up, girlfriend?”
Emma is one of Maya’s favorite nurses. As she approaches the crib, Emma unclips her badge and offers it to Maya. “If I let you hold this, can I check your G tube?” Maya snatches the badge and waves it happily.
“OK, I’m going to uncover your belly and look,” she says, slowly lifting Maya’s shirt. Maya considers this, then looks at me.
“Do you want me to stop rubbing your back while Emma is here?” Maya shakes her head and reaches for my glasses.
I do not let Maya have my glasses. We negotiate for a while. She decides I can continue the massage (and keep my glasses) if I make funny lip-popping sounds. There is more negotiating when Emma has finished her examination. Ultimately, Maya returns Emma’s badge in exchange for a ball with a bell inside and a quick game of peek-a-boo. I’m impressed by Emma’s easy wisdom and her willingness to take a few extra seconds to be playful. I have seen other nurses wrestle things out of Maya’s hands. The nurse always wins and sometimes it’s necessary, but it makes Maya furious—and it rarely yields faster results than talking and playing with her. And, from a selfish point of view, Emma’s approach leaves Maya calm and happy. Today is one of the days she falls asleep during her massage.
Emma and I are both clear that our goal is to provide care. The playfulness is not what brings us to Maya’s bedside. It’s just a part of our humanity that’s helpful in a difficult time.
I understand that other care also needs to be provided and I will have to “share” this patient and the workspace with Maya’s nurse. I also know that “giving a massage” to this patient is going to look different than other massages I have provided. This patient is not going to lie down or slow down so I can apply techniques or “fully address” any area of her body.
Dr. Catriona Mowbray, the research nurse coordinator for Supportive Studies in the Division of Oncology at the Children’s National Hospital in Washington, D.C., explains that this is more about the massage therapists themselves than it is about the intervention. “The Healwell massage therapists have earned the trust of the clinicians at Children’s National Medical Center. They have seamlessly integrated into the way things happen at this hospital. The massage therapists who work with Healwell have taught us what to expect from massage therapy. It is part of medical care when it’s provided in this way.”
It may seem a small thing, but Mowbray has all the massage therapists wear uniform scrubs—yellow pants, blue top. This is a subtle but clear message that they are part of the hospital team, and the specific color of those scrubs makes them easily identifiable to staff and families.
Situational Awareness
The hospital is not a quiet place. There is a lot of noise. There are kids shouting, laughing, and crying. There are alarms and announcements, beeps and boops. The walls are painted bright colors and are covered with posters, drawings, and signage. The rooms have giant windows and the doors are heavy. They whoosh when you open them and some crash loudly if you close them too quickly. Often when we enter a patient room, the light is bright and there are several people—adults and kids—talking, eating, playing games, administering medication, changing diapers. Moana is singing on the television and at least two people are using their phones. There are a lot of balloons.
Chances are you’re already practicing situational awareness as a massage therapist. Your client arrives, and you ask how they are feeling. Certainly, you are listening to their words, but you’re also watching how they move. You are attuned to their tone, to their mood. Your demeanor and your treatment plan change, depending on the information you receive from all these sources.
It’s the same in the hospital except there’s a lot more input. It’s important to take it all in. Who is in the room? What’s the mood? What’s the layout? Where is the patient? Wait … there are two kids in this bed … who is the patient? Each patient room is a completely new world. How would you walk into the apartment of a person you’ve never met?
“I have been impressed by the empathy of the massage therapists,” Mowbray says. “They are able to be with patients in a way that is therapeutic and doesn’t try to coax them into an interaction they don’t want to have.”
The Truth About Hospital-Based Pediatric Massage Therapists
When massage therapists come to Healwell’s hospital-based pediatric massage therapy course, they think we’re going to teach them techniques and jargon and protocols. They think we’ll teach them how to tell a story about how we’re “painting a picture” or playing a game with our touch. Providing massage in this way deprives kids of the opportunity for touch to be touch. It says that massage is somehow something we have to disguise. Massage is its own story in this setting. We don’t have to write one. It’s kind, compassionate touch at a time when most other touch is not.
The practice of hospital-based pediatric massage therapy is not a vocation that should be limited to people who “have a way with kids.” Liking kids and wanting to be up close and personal in the lives of very sick kids and their families are not the same thing. We know (and even employ!) plenty of massage therapists in our peds program who don’t go all squishy over kids. They don’t feel tempted to smell babies’ heads. Their voices don’t go up two registers when they speak to people who are shorter and younger than they are. It turns out you don’t have to squeal and coo when you see an infant to be a really great hospital-based pediatric massage therapist.
Massage therapy, for kids and adults, both inside and outside the hospital, is at its best when someone who already has skilled hands also brings exceptional listening skills, attention to environment, and a grounded understanding of scope to collaborative care.
I knock on the door and slowly open it. Simone’s room is dark and silent. This “pediatric” patient is 22. She was diagnosed with sickle cell anemia when she was 5 months old. She experiences severe and frequent pain crises and has been admitted to this hospital many times. Simone is lying in the bed. Her makeup is perfect. Her hair is wrapped in a colorful scarf, tied with a flawless, complicated knot. Her eyes are closed, but, after watching her for a moment, I’m pretty sure she’s awake. There is a chair near her bed. I sit down and I say, quietly, but clearly, “My name is Kerry. I’m a massage therapist. Your care team asked me to visit and see if you’d like a massage.” She nods a barely perceptible nod. When I ask where she’s experiencing the worst pain, she points to her legs. I place my hands on her right thigh and wait. She nods again.
We spend the next 20 minutes in silence. Simone never speaks. She never opens her eyes. When what I am doing is helpful, she gives me that tiny nod. When what I am doing is unhelpful, her leg tenses ever so slightly under my hand and her pencil-thin eyebrows twitch. At the end of the session, I whisper, “Thank you for letting me work with you today, Simone.” She nods. I close the door behind me as slowly and as quietly as I can.
It would be easy to spend the 20 minutes described above wrestling with your own head trash. “Is it working?” “Does she like it?” But that takes you out of the present moment.
This patient is a person who has an intimate relationship with pain. She also demonstrated, from the beginning of this interaction, that she did not feel up to proactive or engaged verbal communication. The therapist has to believe in the value of her presence there and also be quiet enough inside to see and feel the patient’s nonverbal feedback.
“Don’t Call Me Buddy!”
In the children’s hospital where I work, it is not uncommon for the nurses to put signs on the doors with special instructions for other visitors and providers. They usually say things like “Please cluster care to avoid overstimulating me,” or “Male providers, please knock, introduce yourself, and wait until mom opens the door.” My favorite sign ever said, “Don’t call me Buddy. My name is Stephen.”
Justine was born with a rare birth defect called agenesis of the corpus callosum (ACC). Justine’s mother was sitting in her daughter’s hospital room one day when a group of health-care providers doing rounds stopped at the open door of Justine’s room. The physician leading the rounds said, “This is 721, ACC, female …” Justine’s mother sat in disbelief. She said that she wanted to ask, “This is 721 ACC female? Did someone change my daughter’s name? Because this is Justine.”
When you first meet a young person, it might feel like calling them “kiddo” or “pal” or “champ” is a comforting, friendly way to greet them. It isn’t. It’s a way of showing them that their name is not that important to you. Using a patient’s name when you speak to—or about—them is a way of telling the patient and their family you see them. Using a person’s name is a way of acknowledging they are an individual. It reminds them (and it reminds you too) there is a whole life outside of—and around—this moment in the hospital. When you use a person’s name you are saying, “I know you are a whole person. You are not just another diagnosis or room number on my list.”
The choice to use an invented nickname or to slip into diagnosis-as-name is essentially about discomfort with an unknown person or situation. There are many ways we use language to distance ourselves from difficult situations, things that frighten us, and things that make us feel unprepared. In reality, these euphemisms, nicknames, and aphorisms have the opposite effect. They don’t distance us from the reality of what’s happening. They distance us from the people who are living that reality, like the patients and families we serve.
Use More Than Words
Marley was born two weeks ago with congenital issues that have still not been fully diagnosed. He has a head of thick, curly hair and striking blue eyes. His skin is very hot, and his breathing is very rapid. Marley’s life will be measured in weeks, not months or years, and he will not leave this hospital during his short life. He cannot hear, and it is unclear what he can see. If you place your finger in his tiny palm, he does not grip it.
The first time I visit him in the neonatal intensive care unit, I massage his mother first. When I ask if I can work with Marley, she looks at me like I’m crazy. I place my hand softly, with no weight at all, on her forearm. “Like this,” I said. She goes soft under my hand and her eyes fill with tears. She nods and I move slowly to Marley in his crib. I touch him so, so softly. I move with his movements. I whisper to him, “You are doing a great job! Look at you, moving those legs. You’re a pretty cute kid, but I bet you know that.”
I smile at Marley and Marley’s mom smiles at me. Eventually Marley falls asleep. As I’m leaving the room, his mother grabs my hand. She stares at her son. She squeezes my hand. I squeeze back. She lets go. When I visit again, there is no hesitation. Marley’s mom beams at me, “He really likes massage.”
Mowbray says one of the many ways the Healwell massage therapists have surprised her is in their ability to get a “yes” from kids and from parents who have expressed fear or reluctance about massage therapy for themselves or for their child. “They listen and teach, and invite families and patients to try something new in a nonthreatening way.”
One of the most important skills of communication in a hospital setting is what we often call “decoding the no.” There are so many unknowns in the hospital, and the general public’s understanding of massage does not lend itself to enthusiastic support for its use with tiny, seriously ill babies. When this mother’s face said she did not want massage for her baby, she didn’t fully understand what was being offered. I provided, in a very experiential way, an opportunity for this mother to see that kind, calming touch is what was being offered. I also knew this demonstration still might not sway this mother. It was about educating, rather than convincing.
Successful Communication Includes Other People
“Hospitals rely so much on teams working together,” Mowbray says. “Good, efficient communication is the secret to that, as well as always assuming the other person is having the worst day ever. Kids are always listening, even if they don’t answer you!”
Charlotte turned 15 yesterday. She’s been in the hospital for 143 days. That’s just this admission. Charlotte’s parents joke that they are “hospital frequent fliers.” When Charlotte was 13 months old, she had a series of strokes that resulted in serious neurological impairment. Her parents are almost always at the bedside. They constantly talk to her. When you say Charlotte’s name, she smiles, so they sing her name over and over. They are warm, funny people who offer candy and chips from their vast stock in the corner to every provider who enters the room … unless that provider speaks to them before they speak to Charlotte. The providers and visitors who talk over Charlotte, who don’t tell Charlotte what they are about to do, who don’t look at her while they provide care are met with polite, tight-lipped, single-syllable answers.
It is easy to imagine that Charlotte can’t understand words that are not her own name. It is easy to confuse nonverbal with noncommunicative. Even after working with Charlotte many times, it is hard for me to know what Charlotte enjoys and what she doesn’t. She has a great deal of muscle spasticity. Her limbs are rigid, and she moves suddenly and jerkily. Sometimes her movement is voluntary, sometimes it’s not. I’m not always sure if her movement is in response to my touch. Sometimes Charlotte moans with joy. Sometimes she moans with pain. It’s not always clear to me which is which. Her parents are keenly attuned to Charlotte’s language. I watch Charlotte carefully, but I also ask her parents. “Do you think she’s enjoying the foot massage? Or am I tickling her?” Is she tensing because her shoulder hurts or because on the TV, above my head, Poppy and her troll friends are in danger of being eaten? With the help of her parents, I can adapt my pressure, change my approach, keep doing what I’m doing, or just know we’re done for today.
Success in communicating with patients is deeply connected to the commitment to communicate with all the people around them. This obviously includes their parents and family, but it also includes all the other members of their care team. Written and verbal communication with family and providers is as essential to providing good care as anything that happens during direct patient contact. Nonverbal communication is an integral part of the picture too. You are communicating all the time in ways you need to become more keenly aware of.
The nurses and other providers in any hospital are extremely busy and extremely protective of their patients. This dynamic demands a bit of a communication balancing act. The massage therapist doesn’t want to bother the medical staff, and, as a result, walks into a patient’s room, passing the nurse, without speaking to them. If this happens, that nurse is likely to stop the therapist or chase them into the patient’s room asking, “Who are you? Why are you here? Who said you could touch this patient?” Even if the therapist can answer all these questions reasonably and correctly, they have already made this nurse suspicious. The massage therapist is not trustworthy in the nurse’s eyes. This nurse does not think of this therapist as part of the team.
On the other hand, if the massage therapist tracks down a patient’s nurse and asks a billion questions, the therapist is also showing that they don’t belong. This nurse is busy. They aren’t here to brief the massage therapist on the entire medical and social history of this patient and family. Why are you wasting my time?
An effective massage therapist hones their communication. We train massage therapists to introduce themselves in a way that makes it clear they are a member of the care team. We know that we need to ask just one or two short questions that will show the nurse that we respect their time, we understand that the nurse knows things about this patient that we don’t, and that we are asking only for the information that is needed to provide the best possible care to the patient.
As professionals, we know how to construct these questions in a way that leaves space for information we may not expect, but that might be invaluable. For example, “Hi. I’m Kerry. I’m a massage therapist with the Palliative Care team. I was asked to see Jessica in 237.” Then, we pause, and let that information go in.
Wait for the nurse to make eye contact. Maybe this nurse doesn’t know there is a massage therapist on the Palliative Care team. Maybe they didn’t catch the massage therapist’s name. Maybe they are writing an angry text message to their boss. Give them a second.
Depending on the nurse’s response, there are lots of possible questions a massage therapist could ask, but here are a few that can elicit useful answers and clinical trust:
• My census was printed early this morning. Is there anything that might have changed for this patient since then?
• Does this patient have any skin breakdown/wounds/devices I should be aware of and that might be covered or not immediately apparent?
• Is anyone else at the bedside?
• We frequently see a decrease in heart rate or respiratory rate during massage. Is there any reason that would be inadvisable for this patient?
After a session, our massage therapists check back in with the nurse. We let them know if anything happened that might support or change the care they are providing. We thank them.
Once communication with the nurse is complete, we close the encounter with another important piece of communication: the therapist’s note in the Electronic Medical Record. Your note is intended to share the most important details of the time you spent with the patient.
Most of the other members of the care team are not massage therapists, so typically we indicate the basics of what we did during the session, including the level of pressure we employed, how our work was received, and anything we observed about changes in patient vital signs or family interactions that other care providers should know about. It’s essential to be factual, brief, and clear. We do not exaggerate, guess, or share our personal opinions.
When massage therapists communicate with other providers, we must use the language they use. We need to ask them to clarify when we don’t understand. We cannot pretend to know if we don’t know. We must cultivate genuine curiosity about what the other providers know and see and experience as a result of their training, their position, and their interactions with the patients we share.
At Healwell, we are passionate about using the Walton Pressure Scale in our Electronic Medical Record entries and in conversations with other massage therapists and providers. The Walton Pressure Scale provides a more objective measure and language about an otherwise subjective intervention. It also allows us to share common terms and understanding about how massage therapy was/is applied. You can find more information about the Walton Pressure Scale in Massage Therapy and Medical Conditions: A Decision Tree Approach by Tracy Walton (2011).
When we follow these guidelines, other care providers at the hospital remember us. They seek us out. They ask our opinion. They give us more detailed information that helps us provide better care. They trust us.
“Trust takes time and patience,” Mowbray says. “The Healwell therapists are constantly available to demonstrate, train, educate, and advocate with the institutional decision makers and bedside staff. I can’t remember a moment when it was clear that the massage therapists were accepted as part of the team. It came on gradually.”
Be Patient and Know When to Quit
David is 4. When I arrive, he and his mom are on the couch. David is pushing a small dump truck with one hand and shoving Cheerios between the couch cushions with the other. I introduce myself to both of them. He doesn’t look at me. He behaves like I am not there. His mother tells me, “David never lets anyone touch him except me. He freaks out every time anyone even just examines him.”
“Can I give you a massage?”
“Really?” his mom says. “Yes! I would love that. My shoulders are killing me!”
David’s mom turns a little on the couch and I massage her neck and shoulders. She closes her eyes. She sighs, “This feels so good.”
David watches us for a moment, then returns to his trucks. While I rub his mother’s shoulders, David slides a little closer to me. His mother sighs happily again. David stares at her, then slides a little closer. When he looks at me, I look at his mother or I look out the window. After 10 minutes, he has maneuvered himself and his trucks so that he is very close—with his back turned toward me. I sit next to him.
“David, can I massage your back too?”
“Vroom!” he says. He doesn’t look at me, but he scooches an inch closer. I place my hand on his back. He is still for a moment. Then, he leans gently into my hand. He uses his truck to push more Cheerios into the couch, and I make slow circles on his back.
David’s truck drives over his mother’s knees, and I gently squeeze his shoulders. His truck moves more slowly, and I do too. His truck speeds up. I speed up a little too. The truck stops. I stop too. Better to end on a high note than to push your luck.
“Thank you for letting me work with you today, David.”
His mother is staring at me like I’ve performed a minor miracle. “I can’t believe it. He doesn’t let anyone touch him.”
“There’s a first time for everything. Right, David?”
He looks directly at me and grins.
“David, high five?”
I hold up my hand and he doesn’t miss a beat. He slaps my palm. He goes back to his truck. “Vroom!”
What is Healwell?
Healwell is a growing team of massage therapists who work with children at Children’s National Hospital and also with adults at numerous other hospitals and clinical facilities. Healwell trains massage therapists across the country. It was founded in 2010 by Lauren Cates and Brenda Teal.
Healwell offers continuing education for massage therapists and other health professionals to support meaningful integration of massage therapy, as well as interprofessional collaboration and self-awareness in effective and sustainable caregiving. Its team of specially trained massage therapists collaborate in care and partner with hospitals to create and conduct research about the feasibility and effect of massage therapy on people living with illness.
Healwell is a nonprofit organization based in Arlington, Virginia. You can learn more about its programs at www.healwell.org.
Learn more about working with pediatric and adult hospital patients in the authors’ video-based online course, available in the ABMP Education Center at www.abmp.com/ce.
Notes
1. All names of patients and family in this article have been changed to protect patient privacy.
2. Marcia Levetown and the Committee on Bioethics, “Communicating with Children and Families: From Everyday Interactions to Skill in Conveying Distressing Information,” Pediatrics 121, no. 5 (2008): 1,441–60, https://doi.org/10.1542/peds.2008-0565.
3. Chart adapted from Jodi E. Mullen et al., “Caring for Pediatric Patients’ Families at the Child’s End of Life,” Critical Care Nurse 35, no. 6 (December 2015): 46–56, https://doi.org/10.4037/ccn2015614.
4. Chart adapted from Jodi E. Mullen et al., “Caring for Pediatric Patients’ Families at the Child’s End of Life,” Critical Care Nurse 35, no. 6 (December 2015): 46–56, https://doi.org/10.4037/ccn2015614.