By Shirley Vanderbilt
Originally published in Massage & Bodywork magazine, February/March 2007.
Massage therapist Tina Allen was making one of her routine hospital visits when the father of a hospitalized child approached her with a question. Allen is director of the Children’s Program for The Heart Touch Project in Los Angeles, California, a nonprofit group providing compassionate touch to local homebound and hospitalized men, women, and children. The father’s little girl was only six years old, severely injured in an auto accident, and now quadriplegic. “He recognized my Heart Touch shirt and asked if I had given his daughter a massage,” Allen says. “We talked for a moment in the hall, while the ice he was getting for his daughter was melting away. He was so thankful that Heart Touch had provided massage for his daughter. Over the six weeks she had been in the hospital, she hadn’t been able to sleep. Every part of her body ached, and she couldn’t get comfortable. After her first massage she finally slept. He said when he came to visit her the evening after her massage, she told him, ‘Daddy, I got a massage. It felt so good and I was so relaxed, I took a nap after.’ Dad had a tear in his eye and said, ‘Thank you for giving my daughter the medicine she needs to heal.’ It was amazing to know that beyond just providing a massage session for a young girl, we touched the entire family.”
Across the country, massage therapists and bodyworkers are bringing softness and light into the lives of hospitalized children whose days are filled with continual rounds of pokes, prods, and painful procedures in which they have no say. Allen uses Heart Touch to work her magic. At Children’s Mercy Hospital in Kansas City, Missouri, Janet Rose applies her “comfort holds.” Janet Taylor at Children’s Medical Center in Dallas, Texas, relies on lymph drainage and what she calls “positive touch.” Whatever the approach, these therapists are providing a saving grace—the caring touch of a therapist’s hands—to ease pain and anxiety for children on the difficult path of illness and hopefully, toward recovery. The patients range from newborns to teens, the conditions from surgical cases to chronic illness, but the results of the work have a common thread. The child becomes relaxed, often drifting off to sleep, and the bustling, highly-charged atmosphere of the hospital room is transformed to one of serenity and quiet for the whole family.
Rose recounts her work with a teenager born with gastroschisis (a congenital abnormality in the abdominal wall) whose repeated hospital stays since birth were often punctuated by sleepless days and nights. Sleep finally came, the parents reported, after Rose had administered a basic Swedish massage to the girl’s neck, back, feet, and legs. Another of Rose’s patients, an eighteen-month-old with a life-threatening disease, was reported by the staff to be irritable and uncomfortable. Most of the child’s body was inaccessible because of medical interventions, but Rose was able to apply comfort holds to the feet, resulting in the child calming down.
“Parents and staff are very appreciative of the calming effects of massage and comfort touch for these children,” Rose says. “I do not know specifically what happens in these encounters. I believe when I enter, patients understand that I have arrived to offer comfort. I am not there to take blood, do a medical procedure, or engage them in rehabilitative activities. I am there to simply be present with them and somehow that intention aids their sense of peace and well-being.”
A Sensible Approach
Several years before the official creation of the massage program at Children’s Medical Center in Dallas, Janet Taylor was putting in volunteer hours at the center, donating her services about four hours a week. In 2002, as a result of a fortuitous chain of events, she was offered a paid position under the supervision of the hospital’s pain management department.
“When we started the massage program, it was something that just made sense,” says Renee Manworren, RN and clinical nurse specialist in the department. One evening when a patient was having difficulty managing his pain, Manworren asked him, “Do you think anything else will help, like massage?” The young man gave his resounding approval. “Before that, Janet had been there as a volunteer,” Manworren says, “and I had known about that.” She tracked down Taylor to help with that one patient and the seed was planted. Manworren and other staff eventually succeeded in creating a position funded by donations to provide massage for their patients on a regular basis. Taylor’s few hours a week at the project’s inception has grown to twenty hours. Now she is joined in the program by massage therapist Wendy Smith, who also fills a twenty-hour position.
“Physicians have been very interested in massage from the beginning,” Manworren says. For certain admissions, such as bone marrow patients, there are standing orders for massage. Neurosurgeons consistently write orders for the treatment as well.
As for the growth of hospital massage programs nationwide, Manworren reiterates, “From a pain management standpoint, it just makes sense. People are incredibly accepting of massage and parents love it.”
Steve Copenhaver, MD, a pediatric pulmonologist at Dallas Children’s is one of the program’s staunchest advocates. “We’re always looking for new things,” he says. “I think it’s an excellent measure to use without any side effects.” Copenhaver points out that the transition from intensive care to the inpatient floor is sometimes difficult for his patients, whether they are preemies or older children with chronic lung problems. “Massage therapy is a great way for them to receive a comforting experience without using medication.” For those parents who are willing to learn massage, he says, “It allows the parents to be helpful and to help the child calm down.” It’s something they can carry home with them and creates a stronger family bond. But even if the parents are not present, he says, the massage in itself is therapeutic.
Although their massage referrals cover a spectrum of conditions, Taylor and Smith each seem to have found their niche. Taylor’s background in lymph drainage and craniosacral therapy has served her well in working with children diagnosed with Chiari’s deformity, a cerebellar herniation that sometimes requires surgical intervention. Post-surgery, the patients are unable to lie flat, but rather are placed on an incline. Often they are afraid to move their head because the incision area is painful and stiff. “I utilize lymph drainage on surgical patients mainly due to the sensitivity and swelling that occurs from the incision and the sutures,” Taylor says. One teenage girl referred to her had been in considerable pain for six days following surgery. The patient agreed to Taylor’s treatment, with mom supportively standing by and hopeful of the results. “The parents see their child’s pain and feel very helpless, but they also see the response to the therapy when looking at the monitor and see their child becoming less tense, breathing easier, and for most, drifting to sleep. This patient did all three.”
Taylor asks her patients to rate their pain from zero to five—zero meaning no pain and five as the worst they’ve ever had. Before treatment, the girl rated her pain at five and, Taylor says, it clearly showed on her face. After therapy she rated the pain as one. When Taylor returned the next day, her patient reported the pain at zero and she was soon discharged home. Taylor has had similar results with her cardiac patients, including those receiving transplants, using lymph drainage to decrease edema and speed recovery.
Smith, who says she works with sick kids by day and rock stars by night, actually had her therapy beginnings providing massage to rock musicians, something she continues as part of her private practice. But it’s the kids who have won her heart. Bone marrow and sickle cell patients top her list of referrals. “When a bone marrow patient comes in, there’s a standing order for Child Life Services because it’s going to be a long stay. Massage has been seen to be such a positive adjunct that it is now a standing order.” With sickle cell patients, she says, “We see how well they can tolerate touch. If they can tolerate it to the area that’s affected, we do a light massage and gradually make it a little bit firmer. We’re moving circulation. When we work with these patients, the affected area is very warm; it indicates there’s an inflammatory process going on, and we can use our hands to redirect that accumulation of blood.”
In 2003, Janet Rose joined a staff of pediatric specialists in the Integrative Pain Management (IPM) department at Kansas City’s Children’s Mercy Hospital. As a new member of the team, she was involved in drawing up the massage protocol for the part-time position. Since then, demand for her work has resulted in growth of the position to thirty-two hours a week, full time. With her eight- to ten-hour days at the hospital and clinic, she’s had to let go of her volunteer hospice work and is considering closing the door on her private practice. “It’s very different work with adults and I will miss that,” she says, “but my devotion is really here.”
Rose says that overall, the intent of the massage she provides is for comfort and relaxation. “The actual treatment is a combination of Swedish massage, myofascial release, and trigger point therapy. Massage for children, especially hospitalized children, is very different than healthy adult massage protocol. The work is rarely deep and always comfort focused. Pediatric massage is very patient centered, with their age, physical, and mental condition in mind.” Through her years of experience in working with the ill and frail, both children and adults, she’s developed a technique she calls “comfort holds,” which she also sometimes teaches to parents.
“It is very much about intention and presence,” Rose says. “A comfort hold is simply encompassing a specific area of the body and holding. The hold does not involve pressure, but is firm, directed, and intentional. The holds are useful for calming the healthy, as well as the stressed individual. An example is to hold the forehead with one hand and C–7 with the other. The palm encompasses the greatest area; fingers are closed but soft. The solar plexus area of the hands or feet is also an excellent location for a comfort hold. These holds calm the central nervous system, which is demonstrated by the patient’s breathing.”
Although referrals cover a variety of conditions, the majority of Rose’s patients come from orthopedics for spinal fusion cases, and from pulmonary services for cystic fibrosis. Before spinal fusion surgery, patients receive a preoperative consult, which includes a massage experience, breathing and relaxation instruction, and an introduction to the patient-controlled analgesia (PCA) for managing pain in the first days after surgery.
“When massage has been ordered for cystic fibrosis patients, I concentrate on releasing the neck, chest, back, and rib cage,” Rose says. “Patients with an exacerbation of their disease usually have aggressive respiratory therapy during their hospital stay. The patients work hard, day and night, coughing to clear their airways. The need to cough disrupts their sleep. Massage contributes to their comfort, rest, and relaxation when they are not involved in other therapies and they are often better able to sleep at night.”
Parents are often in the patient room when the child receives massage, Rose says. “Parents will sometimes attempt conversation during the massage and I will accommodate them briefly, but I make it clear by my attention that I am focusing on their child. I believe the massage experience is a sacred agreement between the person receiving the massage and the person giving the massage. My intention is to meet that perfect place inside each patient, no matter what the condition of the body may be. So, I see beyond the body and its disease. It is in that meeting that patients are able to feel peace and attain a greater sense of well-being. Across the board, there’s a real calmness that comes over the room ... voices drop, the TV volume is lowered or silenced, parents sometimes leave the room, and staff will often delay procedures.”
From the Heart
Nine years ago and fresh out of massage school, Tina Allen began her volunteer work with Heart Touch. Now, as the Children’s Program director, she provides education and inspiration for therapists committed to addressing the needs of medically-challenged infants and children who are hospitalized or in hospice care. “Some of our clients may only want you to hold their hand and talk to them,” Allen says. “Some want more of a massage session. Heart Touch is really about being compassionate and present for what your client needs in the moment. Each session is different and each client unique. The only common element is opening our hearts and providing comfort through our hands.”
The volunteer-based Heart Touch Project was founded by massage therapist Shawnee Isaac Smith more than a decade ago. Smith’s personal experience providing massage to a friend dying of AIDS inspired her to create an opportunity for others with terminal illness to receive the same comfort and relaxation of touch. The program has blossomed over the years—to date, approximately sixteen hundred volunteers have participated in the project, their ranks including massage therapists and bodyworkers, physicians, physical therapists, and nurses.
To qualify for the free Heart Touch training, a volunteer must first already be certified to touch. The two and one-half days of training requires a commitment to provide a one-hour weekly session for adult clients, for a minimum of one year. Those interested in working with children must initially complete the one-year commitment serving adults before signing up for another two-day training in the Children’s Program, which requires yet another one-year commitment of volunteer work.
“During the children’s massage training we provide information specific to working with children of varying developmental levels and medical diagnosis, how to approach children on their level, and how to promote respect and empower children to make decisions on whether or not they would like to receive Heart Touch,” Allen says. Guest speakers from participating medical institutions are also brought in to share their expertise with the volunteers. Further training for international certification as a Certified Infant Massage Instructor (CIMI) is available to those interested in teaching families or working with infants, although volunteers are responsible for the cost of CIMI training.
The administrative and training costs of the Children’s Program are supported through a grant from First 5 LA, which serves newborns to five-year-olds in the Los Angeles area. These funds are crucial to the program’s recent expansion beyond Children’s Hospital Los Angeles to several other medical centers. “As we develop a program at each new facility, our curriculum has to be updated to be facility-specific,” Allen says, thus matching the training to protocols for each hospital and each new population being served.
From Tots to Teens
In a world where adults are in charge and their imposed procedures mandatory, the massage therapist presents the hospitalized child with a rare opportunity—a choice. Allen says the Heart Touch therapists explain their service in age-appropriate language to help the child understand what is going to happen. “Every time our therapists go in to see a child, they ask permission of the child whether they would like to receive massage or not,” she says. “They ask, is it okay to start with your hand or your foot? And the child decides. These children are empowered by accepting or refusing this service. They decide how much massage they would like to receive. This is one of the few services a hospitalized child has the right to choose or refuse.”
The importance and benefits of that choice is clearly evident in a story told by Allen of a young Heart Touch client who had never received massage. When the volunteer therapist explained the service and asked permission to give him massage, he would only allow her to massage his feet, and only with his tennis shoes on. This went on for several visits. On the fourth visit, he told the therapist, “I think it would feel better if I didn’t have my shoes on.”
Working with the hospitalized child is a burgeoning specialty, but one that has little history to offer as a framework for practice. As programs grow, therapists are learning the “how to.” Surrounded by medical experts within the hospital environment, they can seek out staff to educate and inform regarding the child’s condition and status, but blending this integrative approach into hospital protocol is a relatively new concept for all concerned as they move forward.
Although Taylor’s background includes Upledger training, infant massage, and working with a pediatric clinic, what she encountered in the hospital environment was a challenge. “This was completely different because these children are hooked up to IVs and respirators,” she says. “They have tubes hanging out all over, especially in ICU. You realize your experience and keep it at hand, but you have to set it aside and know you’re just reaching in there for reference. Working with children—babies and sick ones—you have to be totally aware and sensitive to them. Everything is modified and listened to. That’s one of the biggest and most important things we do—as we are going through the door we are listening with our eyes, our ears, and our hands.”
Smith says when she joined the Dallas program it was relatively new. “Everything we’ve developed has been through exploration and modification. We base our approach on the developmental level of the patient. Each massage is unique to that patient’s situation and disease.” Smith says she relies on her clinical knowledge, but also has access to the hospital’s team of experts when it comes to understanding the medical aspects of the case.
Aside from therapeutic considerations, there are the rules and regulations of the institution itself. Allen says Heart Touch volunteers go through the same privileging process as other hospital staff—tuberculosis testing, health clearance, background check, fingerprinting—because they have the same access to children. In each hospital department a lead medical staff person is designated to assign children for Heart Touch services. “These people are known as our champions,” Allen says. After consent is granted from the physician and parents, and also from children who are of a certain age to consent, the lead contacts Allen who then matches the child to an appropriate volunteer. “Sometimes the social worker needs to give consent as well,” she says. “It depends on the diagnosis and the patient’s condition.”
Those programs operating under pain management departments have a specified protocol as well. At Children’s Mercy Hospital, Rose’s assignments originate with formal consults sent directly to the IPM medical director from the patient’s attending physician. “After receiving the consult, our medical director, RNs, and anesthesiologists identify and assign massage patients,” she says. “If I have questions or concerns about a patient’s condition, I seek the advice of any of the pediatric specialists in IPM and/or the nurse practitioners on each unit.”
Heart Tugs and Hugs
Being witness to human suffering, especially that of a young helpless child, can take an emotional toll on even the strongest of hearts. It’s an up and down ride, from the elation of recovery to the sadness of loss. Self-care in the midst of giving so much to others has always been an important aspect of massage practice—even more so in this specialized field of hospital work. To process her experiences, Taylor talks to her peers and seeks out bodywork. “I get my own medicine,“ she says. At Children’s Mercy, Rose’s support system includes her medical director, supervisor, and the nurses. “We also have a palliative care team and I am in touch with them. And, on a personal basis, I have massage therapy friends I can certainly confide in about difficult situations.”
Heart Touch offers volunteers a monthly support group facilitated by a licensed social worker. “Volunteers have the opportunity to check in and let us know how everything is going with their client,” Allen says. “They can talk about it with someone who can give them honest feedback, as well as learn from volunteers who have had similar experiences.” In addition, the Children’s Program hosts a special support group every two months. “This is a second opportunity for volunteers working with infants and children, who are hospitalized or in hospice care, to meet and share their stories, as well as offer support to each other in this often difficult work. That’s one more special thing that makes our program unique, and also strengthens it.”
While support groups and personal bodywork are essential aspects of maintaining balance and self-care in this challenging field, sometimes all it takes is a hug to lift the spirits and make it all worthwhile. “I had a child who had her third birthday while going through a bone marrow transplant,” Taylor says. “This can be seemingly long and challenging for the patient and parents—the patients get very sick and it takes weeks. They usually get so sick that they don’t want anyone looking at them or talking to them, and the right kind of touch can help them relax and sleep.” For these patients, Taylor uses positive touch—gentle, nurturing, noninvasive. “It is being very present for the patient and aware of their slightest gesture that speaks volumes of how they feel.”
With the three-year-old’s condition improving, she looked forward to Taylor’s visits. “She would spy me at the door gowning up and she would smile and motion for me to come in. She had been getting better but sometimes little complications come up. Her tummy had gotten very large and she was having bouts of diarrhea. I had shown her mom how I do lymph drainage by doing it on her and she felt a difference herself. When I did it on the patient I could feel it beginning to open and clear and nodded to the mom. Mom then said to her child, ‘Do you feel it?’ and the child said, ‘I feel it, I feel it,’ and we all laughed. A couple of days later when I came to her room she came running across the floor to me with her arms open wide. I picked her up in my arms and she hugged me with the biggest and best hug I have ever felt. And she was free—no wires or tubes anywhere. It was great and she wouldn’t let me go. These little ones can make you feel like a million bucks.”