Massage as a bridge in interdisciplinary hospice work

Recently I had the good fortune to attend a workshop called “Circle of Life: Hospice and Palliative Massage,” taught by Valerie Hartman. Valerie is both a nurse and a massage therapist, and she runs a complementary therapy program at a hospice in Philadelphia.

Although we covered many issues relating to hospice massage, I left the workshop with a deeper understanding of the role massage therapy can play within the interdisciplinary framework of hospice care.

Hospice practice, coupled with government regulations, require that patient care be provided by an interdisciplinary team of health care professionals. This team is comprised of physicians, nurses, health aides, social workers, and chaplains. The idea is to care for the patient (and family) on not just a medical level, but a psychological and spiritual level as well.

Introducing massage therapy into this context provides an opportunity to weave all three of these objectives together into one form of clinical practice. When we enter a patient’s room, we are working to relieve the fear-based component of his/her symptoms and create a sense of peace and well-being. We treat our patients on the medical, psychological, and spiritual levels at the same time.

Maintaining boundaries in hospice work

Watching people die, day after day, makes for a challenging job. When patients die of age-related conditions and I am able to use massage therapy to help make them comfortable, the job does not seem as hard. But working with young patients who have devastating illnesses can be overwhelming.

Most people who work in this field share a basic personality characteristic, in that we are all, at heart, caregivers. Working alongside others who are driven by the need to care for people inspires me on a daily basis. Sometimes that need can become unhealthy. This is when boundary maintenance counts the most.

Joe was a patient in his mid-30s with an aggressive cancer. His wife was pregnant with their second child. When I met him he was still conscious, but very weak, and spent his time in the hospital surrounded by family and friends. He was clearly going to die soon.

I entered the room and introduced myself, explaining that I was offering massages for family members. At first, no one wanted to take me up on it. Finally Matt, Joe’s brother-in-law, agreed. I brought him out of the room to a semi-private area and invited him to get into the massage chair. During the session he shared a little bit about his heartbreak at seeing Joe so sick. I felt my heart breaking along with his.

Matt helped me convince Joe’s mom and sister to come and get massages. His mom was stoic but his sister sobbed the entire time. As someone who has one, precious younger brother, I found myself identifying with her. I felt a deep terror creeping into me at the idea of facing the loss of my brother. At that point my boundaries began to strain and crack.

I went back into the room to offer Joe his own massage. At first he said he wasn’t up to it, because he thought it meant having to reposition himself and he was too tired to move. I explained that he could stay right where he was and I offered to just massage his feet. He agreed, and I got to work.

Throughout the session, Joe was watching TV and playing with his PDA. I’ve experienced this before with young patients who are dying: the need to stay plugged in and connected seems to be a way to cling to life. His mother came in and I showed her what I was doing. She told me that she also massaged Joe’s legs, and I encouraged her to do so whenever she could.

When I finished, I thanked Joe and his mom, and went about seeing a few other patients. I was getting ready to leave for the day when Joe’s wife arrived. I heard the nurse ask her if she wanted a massage, and she said she really needed it, but had to eat something first. I realized that I might end up having to stay late, and wrestled with my boundaries once more.

How, I wondered, could I take care of this woman and also take care of myself? I had an important meeting that afternoon and I couldn’t be late. I gave her 15 minutes, then went to check in. Although my instincts were calling me to put my own needs aside, I forced myself to let her know that I wanted to work with her but I had to leave soon. I was able to work with her and still leave with enough time to get to my meeting.

Most of the time I visit this inpatient hospice unit once a week, on Wednesdays. That week, however, I had scheduled time there on Friday to train one of my volunteer massage therapists. Because I had been so emotionally involved with his case the last time I was there, the first person I went to see was Joe.

Once again, he only wanted his legs and feet massaged. He told me that his mom and wife had also been massaging his feet and legs. He was still weak, and seemed more tired and anxious. His mother later told me that she had been up with him all night as he processed the information that his death was imminent. He was scared, she said, and she had tried to comfort him. I tried to imagine what that must have been like, and again my boundaries began to give way.

When I got home from work that night, I broke down in tears over a petty disagreement with my husband. I needed to show him, and to show myself, that this case had gotten to me, that the cumulative effect of so much death and dying sometimes overwhelmed me. It was the first time in nearly a year on the job that I had ever cried about it.

During the weekend I found myself thinking of Joe and his family from time to time, as much as I tried to let it go. When Monday came along I thought I might end up stopping by the inpatient unit to see them after spending the morning in the office. As the day went on, I tried to get clarity about the situation. Joe was being cared for by nurses, doctors, social workers, family, and friends. His mother and wife were massaging him. Did this family really need me, or did I need them? Was I planning to make a special trip because I needed to feel important, to prove my dedication to my work?

I confessed my ambivalence about the plan to my husband and told him I thought I might be setting bad boundaries. He said he agreed, and reminded me that I should try to treat all patients the same. In the end, I chose to stay at the office and finish the important program development work that I had set out to do that day.

I know that some cases will affect me more than others. I can’t control that. I can only observe my emotions, find a way to let them out, and try not to lose myself in the process.

A new study on “biofield therapies”

The International Journal of Behavioral Medicine recently published a study by Shamini Jain and Paul J. Mills that reviewed 88 clinical studies of energetic healing techniques such as Reiki, Therapeutic Touch, and laying on of hands. “Biofield therapies” is the preferred terminology used by the National Center for Complementary and Alternative Medicine, a branch of the National Institutes of Health.

As a massage therapist who values scientific inquiry, I found this article helpful. I have not studied any biofield therapy modalities and I am somewhat skeptical of them. I am also aware, in my clinical practice, of subtle forces that cannot be quantified in simple physiological terms. This means I have felt something that might be called “energy” in the course of performing massage therapy.

Jain and Mills have found strong evidence that biofield therapies can reduce pain for certain patients, and moderate evidence for reducing pain in others. They found moderate evidence for decreasing negative behaviors in dementia patients and moderate evidence for decreasing anxiety for people who are hospitalized. In other areas, the evidence was less clear, but the main conclusion of the article is that this is an area that merits further study.

I’ve come to the same basic conclusion myself: that it would probably benefit me to study at least one of these modalities so that I can make a more informed judgment about their usefulness.

The Stressed-Out Massage Therapist

When I take a yoga class, I tend to project a fantasy about the perfectly balanced life of my teacher, assuming that the serenity she projects during that 90 minutes extends to all aspects of her life. When I think about my clients projecting that kind of fantasy on me, I have to laugh. One of the more challenging aspects of giving massages to people with health issues involves performing the job under the stressful conditions of everyday life.

Last night I got back late from a three-day road trip. I was scheduled to see my first client at 9 a.m. this morning. I set the alarm (or so I thought) for 7. My husband abruptly woke me up at 8:20, both of us having overslept. I managed to jump into some clothes and get out the door in 10 minutes. Grabbing a corn muffin and a coffee on the way to the subway, I tried to gather the strength for my upcoming session.

When I arrived nearly 1/2 hour late, my client was irritated. She’s the busiest 82-year-old in NYC and she had a full schedule ahead. I managed to get her on the table so I could get to work. I was obsessing about my day ahead and I could tell that she was suffering from a similar obsession. After about 15 minutes, she had begun to relax, and so had I.

A similar dynamic continued throughout the day as I saw more clients. The third, a cancer patient, is always late for her session and today was no exception. Because I only had a short time to work, I hurriedly began the massage with her legs, which always ache from the chemo. I was distracted and thinking about my schedule for the rest of the week when I heard her sigh. I thought she was reacting to the sirens outside so I chuckled. Then she said, “I’m having a hard time letting go of my thoughts.”

I wanted to say “So am I!” but that would be inappropriate. Instead I began offering her some guided breath meditations. I encouraged her to follow her breath, to feel her abdomen expand and release, to pay attention to the feeling of the breath entering her nostrils. As I instructed her, I found myself focusing on the work I was doing at that moment rather than imagining the work I would be doing the next day. I ended the session feeling grounded and, dare I say it, serene.

The great paradox of giving massages is that sometimes the work itself is relaxing. The stresses of my own life can fall away if I am able to make myself fully present for my clients. It doesn’t always happen, but I can’t think of another job that has the potential to help me relax just by doing the work and doing it well.

Sometimes when we touch

A geriatric care manager once referred a 90-year-old man to me for massage. He was a retired surgeon, recently widowed, who was experiencing age-related physical problems but whose mind was still perfectly sharp. His care manager told me that he was rather depressed, and she thought that massage might help with his psychological issues. She warned me that he’d never had any kind of massage therapy or other body work, and that, as a surgeon, he is skeptical of “alternative medicine.”

When I met Dr. P., it was not for a massage, but for an interview. Along with his care manager, we met to discuss his condition and how massage might help. He agreed to give it three sessions, which we were to start the next week.

During the first session he had a difficult time positioning himself comfortably on the table. He was very nervous about falling off the table when it was time to turn over, so I made a point to stand so that my body would block any chance of him falling, reassuring him that he was safe.  He asked me a great deal of questions about what I was doing and why. By the end of the session, though, he seemed to have let go a little bit and he admitted to enjoying the massage.

The next two sessions proceeded similarly; he would ask me questions about massage, asking me at one point: “under what diagnosis are you treating me?” During these sessions he had shared a bit more about his mental state, and I realized that, in his case, the primary benefit of the massage would likely be psychological.

I explained to him that the massage would help with his circulation and stiffness. In addition, I responded, “You’ve reported to me that you have been feeling depressed. Massage is known to help relieve depression and anxiety. Fundamentally, I am here to help you feel better.” I felt I was being honest and forthright with this man, who was showing a kind of vulnerability that must have been very difficult. At that, he stopped asking questions and seemed ready to receive what I had to offer.

At the end of the third session I asked him how he would like to proceed. He responded, “I’d like to try three more.” In the six years I’d been in practice, this was the first time I had encountered this kind of extended trial period. On the one hand, it felt good to have “won him over” in part. On the other hand, I felt like I wasn’t sure what more I needed to prove. Clearly he had some issues with committing to this course of treatment, but I wasn’t getting all the information from him.

The second set of sessions went much more smoothly. Dr. P. still seemed anxious about falling but I was getting the sense that he was beginning to trust that I would not let that happen. He also showed a marked change in affect at the end of his sessions: he came off the table looking relaxed and content, instead of tired and anxious as he had seemed when I arrived. While session six was taking place, his son, J, came into the apartment. At the end of the session J told me how glad he was that his dad was having these massages, and that he would lobby Dr. P. to continue them.

When it was time to discuss the future of his massage treatments, Dr. P. asked J to leave the room. He then told me that he had decided to suspend his massages. “I don’t think it’s good for me psychologically to continue.” I paused and tried to digest that information. After all, the main purpose of the massages, from a treatment standpoint, had been to relieve his psychological symptoms. At the end of each session he seemed like he was feeling better. What was going on?

Dr. P. reassured me that I’d done a great job, but he reiterated that he didn’t feel like it was good for him, psychologically, to continue. He admitted that he had some issues that were getting in the way, but he declined to elaborate. He promised to keep in touch should his circumstances change. I thanked him for giving massage a thorough trial, shook his hand, and said goodbye.

As I left the building it occurred to me that massage therapy might have been too intimate an experience for an elderly widower who had never received touch from any woman other than his wife. The nurturing touch I provided might have triggered his grief on a deeper level. Or he may have become sexually attracted to me, and that may have been uncomfortable for him. Without a detailed explanation I can only guess, but his care manager seemed to agree with my interpretation.

Until meeting Dr. P. I’d always thought that I would want to have massages at the later stages of my life. Even though massage is familiar and comfortable for me, I wonder how it would feel to be grieving the loss of my spouse and to have someone else touching me. I can honestly say now I don’t know the answer, but that maybe, when one is faced with such a profound loss, massage might become a trigger for grief rather than a comfort.

How hospice changed my feelings about patients dying

Working in the hospice field, death becomes a part of everyday life. When I started my hospice job ten months ago I wasn’t sure how it would change me, but yesterday I realized that my perspective had in fact changed significantly.

I arrived at work and the head nurse told me, “Mrs. P. passed away.” Without even thinking about it, I answered, “Oh, good.”

One of the main objectives of hospice care is to allow our patients to die comfortably at home. They only come into the inpatient unit when they have an acute medical issue, such as symptoms that cannot be managed in the home setting.

During the prior month and a half I had seen Mrs. P, a woman in her 80s. come into our inpatient unit three times. I met each of her four sons, who kept a 24-hour vigil at her bedside in rotating pairs. It was devastating for them each time she was hospitalized.

Two of her sons allowed me to give them massages. One was quiet, and the other told me how anxious he was, unable to sleep. As I massaged each of them I could feel the way the stress of their mother’s illness manifested itself physically: tightness through the shoulders, neck, and lower back; shallow breathing; pain.

Her death was the only way that she and her sons could obtain relief from their suffering. So when I heard about it I was glad, because I knew that she was no longer in pain, and that these kind, loving men would be able to grieve, sleep, and eventually start to breathe again.

“Get Well Soon”

What do you send someone who is sick? The default is something that says “get well.”

But what do you send someone who will never get better, who has a progressive, incurable illness? In some cases, it seems, people will still send a “get well” greeting.

Norma Jean, a patient with advanced Alzheimer’s, recently turned 82 years old. Her son and his family sent flowers for her birthday, with a balloon that said “Get Well Soon.” I wonder what they were thinking when they chose that balloon.

Was it her grandchildren who picked it out, who were too young to understand that Grandma was never going to get better? Her son, or his wife, trying to be brave in the face of a terrible, progressive disease?

I was initially so glad to see that they had sent her flowers, then saddened by the sight of the balloon. The patient would never know about her family’s wish that she get well soon and, oddly enough, that seemed like a blessing. She would not have to look at that balloon and say to herself “that’s not going to happen.”

If the balloon said “Happy Birthday” instead, would that be any better, considering that she has no capacity to comprehend her birthday, or even any knowledge of how old she is? She also received a card for her 82nd birthday from a friend of hers that reads, “When we’re 88, we’ll still be friends.” Somehow, even though she can’t understand it now, it seems fitting that her friend chose to honor the sense of humor that I know Norma Jean used to posses.

I hope one of my friends gives me a card like that when I’m in my 80s, and I hope I’ll be able to get the joke.

Selling a free service

More often than I would like, I offer a hospice patient a free massage and they say no thanks.

Sometimes they really mean it. People who are dying experience many intense physical and emotional sensations and sometimes they do not want to be touched. I respect that.

Other times, though, I will try to find another way to sell it.

I asked one end-stage cancer patient if she’d ever had a massage before. She replied “yes, and it was very painful.” I explained that the massage I would give her would be quite different, that it wouldn’t hurt at all because I would use very light pressure.

“Why don’t I just give you a 5-minute foot rub and you can see if you like it?” I asked. She agreed to let me try and then she was sold. I ended up giving her a full body massage. When I thought I was finished with the massage, I asked her if there was anything else she would like. “My chest,” she said.

This is an area I don’t usually massage on very sick people. It is often very sensitive, and massage on the chest feels intimate. Perhaps she’d been sick as a child and was remembering a parent rubbing her chest with menthol ointment. Regardless, this woman who had not wanted a massage was now asking me for comfort and for that I was grateful.

Another patient informed me “massage has never been my thing.” He then explained how he used to like giving his wife (who was in the room) foot massages but that he really didn’t like to be touched.

He started scratching his arms. “It looks like you have some pretty dry skin,” I said. “Maybe you should put some lotion on it.” “I’m too tired,” he replied. I made him an offer: “I could do it for you.” I started by applying lotion to his back. He said, “That feels really good. I guess I like massage after all.” Once again, the not-really-a-massage turned into a full-body massage.

Hospice patients bring with them a lifetime of experience that sometimes includes negative ideas about massage. By acknowledging this experience and then reframing the offer, I can give patients one more chance to receive a few moments of pleasure when they need it the most. Although I understand why some patients would refuse a massage, I like to take the time to understand the reasons behind the refusal to make sure it is the real thing.

Massage and psychiatric disorders

Just before my first session with Liz, Teresa, her home health aide, warned me that she could be a bit “moody.” I wasn’t sure what that meant exactly but I had known my share of moody patients. One day they might swear at me, another day tell me that they loved me. I was trying to be ready for anything Liz might throw at me.

We entered her room and she was in bed, with her eyes closed. “Liz,” said Teresa, “This is Eva. She’s here to give you a massage.”

Liz opened her eyes slightly, glanced at me, and closed them again. “Do whatever you want with me.” Not exactly an enthusiastic endorsement of the therapy she was about to receive, but I took it as consent nonetheless.

She spent the next 20 minutes pretending to be asleep while I massaged her legs and feet. Finally, as I was massaging her shoulder, I decided to try to end her game of possum. “Liz, how does this feel?”

She opened her eyes and stared into mine. “You’re so pretty,” she exclaimed. She closed her eyes again and kept them closed for the rest of the session, but I understood that, by complimenting me, she was trying to say that she was enjoying her massage.

The next week, when I went to see her again, I got some more context for her behavior. It turns out Liz is not merely “moody,” but she suffers from bipolar disorder. Although she is being treated with medication, her moods still vary widely.

During our session she started out resentful, then she began to trust me and relax. When her massage was over, I asked her if I could come back the next week. “Definitely,” she said. My challenge will be to arrive at the next session free of any expectations and prepared to have to earn her trust again.

The Zen of Alzheimer’s

Mrs. C., who is ninety-something and is in the mid-stages of Alzheimer’s, spends the greater part of her days sitting on a sofa, reclining on a chaise lounge, or lying in bed, drifting in and out of sleep. I’ve seen her leafing through her mail, though she appears to have forgotten how to read. Sometimes she will get up and wander around her apartment, a common behavior manifested by people with Alzheimer’s. A professor I once had described it as “looking for herself.”

On the whole, Mrs. C. does not talk much. When she does, she is unfailingly polite, and she uses old-fashioned phrases like “I should think so!” and “I beg your pardon?” and adjectives like “marvelous!” and “lovely!”

During our massage sessions, Mrs. C. is very attuned to her senses of hearing and sight, as well as touch. Often we will hear a cacophony of horns coming from the street, 17 stories down, or a siren approaching from five or six blocks away, and she’ll ask me “what on earth is that all about?” Or she will listen quietly to the music I play for her (she seems to like Brahms and Beethoven best) and then react when there is a dramatic moment, or when the music ends, by exclaiming, laughing, or even clapping her hands. At some point during every massage she will say “that feels so good!” as if it’s the first massage she’s ever had.

Her bedroom is on a southwest corner, and gets direct, unobstructed afternoon light. One lovely fall day, with scattered cumulus clouds drifting across the sky, provided a study in the play of light and shadow.

For the first 10 minutes of her massage, the sun was hiding behind one of those clouds. Suddenly the light in the room brightened dramatically and Mrs. C. said, with surprise, “wow! when it’s sunny, it’s really sunny.” I met her there, sharing her wonder at the brightness of the light, and then just as suddenly it was gone. We laughed, and waited for the light to come back.

Each time the sun returned we reacted together, laughing and exclaiming with joy at the beauty of the light. I asked her if she knew why the sun was doing that. She said, “no, I have no idea.” I pointed out some clouds in the sky and explained how they move in front of the sun, making it dark, and then when they move away, it gets bright again. “I didn’t know that,” she replied, delighted.

Although this disease has taken so much from Mrs. C., she has the capacity to experience wonder at the sensory information that her brain is still able to process. She’s reached a place that so many people strive for through meditation practice, a place where the thinking stops and what is left is awareness. For Mrs. C., there is no such thing as past, or future, there’s only now.