Companionship in Cancer Care
May 29, 2009
Companionship in Cancer Care
May 29, 2009
An oncology nurse once told me that in order to get up each morning and go to work at the bone marrow transplant unit at her hospital, a certain amount of inner preparation was needed. She needed to be able to look her patients in the eye and say, "I will walk with you" through the treatment process.
Her words have stayed with me and referred me back to that inner preparation time and time again. It's no wonder so many nurses are drawn to massage therapy, as there seem to be several parallels in massage therapy and nursing. Touch is one of them. Alleviating suffering is another. And companionship is a third.
In my own work with people with cancer, I've encountered a range of individual experiences and subpopulations: cancer survivors, people in treatment, people at end of life, patients in the middle of the diagnostic process and caregivers. Within each subpopulation of my practice, individual experiences also differ widely. I've worked with people in many emotional states - those who are fearful, driven, hopeful, outraged, accepting, cheerful, terrified, resigned, perplexed, grieving, despairing and at peace. No matter what the journey looks like, all can use companionship.
To be that companion, I too have to ask myself each morning whether I am prepared to truly walk with my clients. Walking with a client means listening deeply, opening my heart, accompanying them without judgment, accepting that wherever they are is wherever they need to be. It means breathing through my own fears and letting my care come through my hands without hesitation. It means touching my client with full-hand contact: palms, fingers and fingertips. It means looking for ways to my client's way, without trying to fix it, without needing either my client or my client's path to be different. To truly walk with my client, I need to prepare myself. I wrote recently for Massage Today about "Meeting the Emotional Challenges of Oncology Massage" in the June 2007 issue and offered some self-care measures to help prepare for each day. For the most part, I follow them regularly.
End of Life
Another step in my own preparation is to read. Recently, I came across an interesting small study from Yale University on massage therapy and meditation at end of life.1 The study sample was made up of people with HIV, not people with cancer. But the study was instructive for me, not just for end-of-life care, but for middle-of-life care, life-crisis care and beginning-of-life care - any kind of care. In fact, whenever I read an end-of-life study, I try to replace "end of life" with "life," "birth," "health," "illness" and so on, replacing one point in the life cycle with another to see if the principles still apply. They often do.
These researchers, led by a physician's assistant and physician, pointed out what many end-of-life caregivers have noted: Little attention is given to the quality of life, especially spiritual quality of life, at this important transition point. They set out to study it, using massage, meditation and both in tandem.
The result was powerful. I have read many massage studies but none have moved me to tears as this one did. The researchers wrote plainly and clearly about their study population and its unmet needs. Years of listening carefully to their patients were evident in their words and in their study plan. They described a sample of 58 patients with late-stage AIDS, all in residential hospice care. They examined overall quality-of-life (QOL) measurements and QOL subscores in well-being, physical function and others. They were particularly interested in their subjects' experience of spiritual, or transcendent, quality of life.
The researchers randomized patients to one of four groups. For comparison, a control group received only "usual care;" care usually provided to people in late-stage disease. The other three groups also received usual care, plus one or more interventions. One group received daily massage, another instruction in meditation. The fourth group received both massage and meditation.
Swedish massage was provided in 30-minute sessions, five days per week, for the four-week study period. The meditation instructor offered a cassette, a tape player, and instruction to do the exercise at least once daily, and she made herself available for questions and assistance throughout the study period. "Metta," loving-kindness meditations guided the listener to feelings of love for the self and others and feelings of well-being. Forgiveness meditation guided the listener to forgiveness of self and others. Looking over this study, I had my first experience of reading statements such as "Just as I wish to be free from danger, may you be free from danger. Just as I wish to be well, may you be well. Just as I wish to be peaceful, may you be peaceful," in a medical journal. It was a sweet moment, if initially disconcerting.
The investigators found interesting results. Alone, massage or meditation affected QOL slightly, but results were not significantly different than the control group. However, when massage and meditation were combined, the QOL outcomes were statistically significant. Moreover, the combined effect of massage and meditation was greater than the sum of its parts. That is, the two interventions combined were more powerful than the additive effects of the two single interventions. In other words, a synergy seemed to be at work. These patients' improved scores persisted even four weeks after the last intervention and may even have persisted at the 68-week mark.
Initially, the researchers had set up the study because of their concern about the experience of AIDS - that it was inherently isolating. Their concern with using meditation was that it can feel isolating as well. By adding in the massage component, they hoped to see whether the companionship of massage made people more receptive to the meditation. From their results, it seemed so. Moreover, they speculated that the meditation could have made people more receptive to the massage. It seemed to me that the "felt sense" of meditation and the "felt sense" massage were potent interactions in the study.
The study is small, and the investigators made no sweeping statements about their results. Instead, they presented it as justification for further study. They suggested future studies be rigorously designed to explore any links between massage and meditation in late-stage disease.
As many studies do, this one offered more questions and speculation than firm answers. However, in it was a hint of the companionship we all need during our most important transitions. Considering all of the hands we need to hold firmly throughout our lives as we start kindergarten, give birth, leave home, get married, say goodbye, hear a cancer diagnosis or make any major change in life, this would seem obvious. Sometimes we forget this, too, leaving one or more of us isolated for a time. This isolation is especially poignant during a health crisis such as cancer or AIDS.
The journeys people take through cancer and AIDS aren't limited to the end of life and the majority of experiences happen smack in the middle of it. While AIDS carries its own particular stigma and isolation, cancer also can be a lonely experience. During any health crisis, Metta meditations on loving kindness and nondenominational prayers of forgiveness may help, as may the skilled touch of massage. Loving kindness comes in many forms and massage might provide one clear, unmistakable, flesh-and-blood sense of it.
May we reach then with firm, certain and open hands.
- Williams A, Selwyn PA, Liberti L, et al. A randomized controlled trial of meditation and massage effects on quality of life in people with late-stage disease: a pilot study. J Palliat Med, 2005;8(5):939-52.