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TRUSTED FOR FOUR DECADES.
(Fred was dying of cancer secondary to AIDS and was partially paralyzed. As I entered his room, he looked up at me from his bed with desperation on his face. I saw that he was clutching his groin. I reached for the plastic urinal, slowly pulled back the covers, helped him position himself, and held the urinal in place. As I bent over the bed holding that slowly filling urinal, his eyes searched my face for a sign that I understood how hard this was for him, how helpless and dependent he felt, and how much he needed me to know what this was like for him. For a few moments, there was just our eyes talking as his face and whole body relaxed. Then he said, "Thank you" in a way and with a tone of voice that was like pure defenseless courage. In that instant, we were both completely awake.
— Brad Byrum, executive director, Zen Hospice Project, San Francisco)
Western culture still suffers under the weight of death taboos. Most people don’t want to see death or even talk about it. This includes a high percentage of people with terminal illnesses who wait, sometimes until it is too late, to discuss their impending deaths with loved ones and even with medical professionals.
Yet there is a medical subculture that welcomes the dying, embraces them, and finds every minute a means of making them more comfortable as the inevitable end approaches, whether they choose to die at home, in a hospice, or in a hospital setting.
And increasingly, those who care for the dying find that complementary therapies bring physical, emotional, and spiritual comfort to their patients. In fact, complementary therapies are quickly becoming standard care in many hospice, hospital, and home care settings.
Depending on the patient’s capabilities, art therapy, music therapy, massage, healing touch, guided imagery, aromatherapy, and hypnosis all are helpful ways of helping patients approach death with dignity, grace, and as much ease as can be humanly given.
"In the last 50 years, the forces propelling the advancement of health care have been science and technology. In some ways, these wonderful advances have overshadowed the importance of caring in health care," says Michael Girard, director of Circle of Life Hospice, a home-based service in Reno, NV.
"The cynical have insinuated that treating disease has become more important than the person with the disease. To a degree, there is some truth in this. However, health care continues to attract many caring and compassionate people to its ranks. And some, in recognizing the need to improve the caring’ part of health care, have found that complementary therapies provide just such an opportunity," he adds.
Death is a process of birthing the spirit, says Deb Girard, Michael Girard’s wife and partner in Circle of Life, and a registered nurse with 30 years of nursing experience. "At Circle of Life, we don’t view death as an physical process, but as a spiritual event where growth and healing can occur — and where more growth can take place as death approaches perhaps than at any other time of life."
Complementary therapies help create a comforting and soothing atmosphere that gives an opportunity for deep and meaningful communication between patient and practitioner.
"I’ve been stunned when people tell me how much art therapy meant to them. One woman’s family told me that she hung one of her drawings over the door and looked at it with great pride until she died," says Barbara Lange, MFA, an art therapy instructor at Pathways in Asheville, NC.
Painting, drawing, collage, and sculpture provide a new medium of expression for many patients, she says. Many people believe they cannot draw and are reluctant to participate in these programs, but in art therapy, there is no right or wrong. The art therapist provides artistic options that will offer stimulation, success, and meaning. For example, a patient who is unable to paint or draw may be offered a sand table or materials for a collage.
Lange leads weekend body-tracing workshops that have "led to extraordinary revelations — laughing, crying, and bonding with each other more than people without illness ever do."
The workshop begins with a long meditation emphasizing peace, well-being, and trust. Participants choose someone to trace their body outline on a huge sheet of paper. "When the tracing is being done, they feel very vulnerable, so it’s important they are able to choose who they would like to do this for them."
When the tracings are complete, each participant fills in the lines — or colors outside the lines — at will.
"One woman with breast cancer actually painted her own breasts and pressed them against the paper," says Lange. Others commonly leave blank their disease sites, while filling in the remainder of their tracings with vibrant, lively colors and images.
A key component of art therapy is to create a safe, noncritical, nonjudgmental environment in which patients can express themselves.
"The art product presents a person’s perceptions through size, shape, color, line, proximity, and presence of people and objects, and the patient is not recording what is seen in front of him, but his inner landscape reflecting his inner vision," states the Alexandria, VA-based National Hospice and Palliative Care Organization (NHPCO) handbook, Complementary Therapies in End-of-Life Care.
Art therapists typically encourage patients to feel free to create whatever they like, and the therapist not only searches the work of art for clues to the patient’s state of mind, but watches the patient’s mood, facial expression, body posture, and emotional and verbal expressions.
Art therapists also help patients and their families get in touch with deep feelings and issues revealed in their images.
"What they’re going through is so devastating that many don’t have words for their feelings, or they may not even know what they are feeling. Art gives them a way of expression that transcends words," Lange adds.
And analyzing the images a patient makes, when appropriate, may help the patient and family members gain insight and understanding that have the potential to lower the anxiety and fear surrounding death, says the NHPCO.
Art therapy can be particularly helpful for children with terminal illnesses because it helps them communicate ideas, thoughts, and feelings far beyond what they are able to describe or communicate in words alone.
Music therapy often is used for similar purposes. (See Complementary Therapies in Chronic Care, September 2001.)
Among the music therapy modalities tailored to terminal patients:
• Life review with music. Using this technique, the patient listens to or participates in music that represents his or her life history. With proper guidance, the patient can talk about a life well lived, elicit memories and emotions, and validate life experiences. Music also can be used as a tool for taking a personal inventory of grief and loss or unresolved personal issues.
• Music listening. Simple listening can elicit physical responses, such as relaxation or stimulation; emotional responses through personal associations and history with particular music; and spiritual responses through aesthetic experience or connection to particular religious or cultural music.
• Topical songs with discussion. This technique is used to support exploration of personal issues or topics through selection of songs related to a specific topic or theme.
• Participation in musical experiences. Playing instruments, singing, and improvising can produce feelings of well-being, reduction of isolation, increased energy, and maintenance of quality of life.
• Song writing. Writing songs can stimulate or record personal thoughts, insights, and emotions. Song writing can be used as a tool for leaving a legacy for family and friends.
• Music with imagery or relaxation exercises. Using either recorded or live music, the music therapist talks the patient through an experience of progressive muscle relaxation or a guided journey through which the patient’s attention is directed away from pain or discomfort and toward pleasurable or insightful experiences. These techniques can be taught to patients for pain management and anxiety reduction.
Music therapists can work with an entire health care team in a variety of ways:
• with the chaplain: for bedside communion, baptism, or other religious services or spiritual work;
• with the social worker: for individual or family counseling sessions supported or intensified with music;
• with the nurse: as a distractive device during painful procedures, for pain management;
• with the home health aide: as a distractive device during care, as a relaxation tool;
• with the massage therapist: music coordinated with massage for effective relaxation;
• with the art therapist: sessions that incorporate both music and art modalities to complement each other;
• with the bereavement coordinator: helping incorporate music into memorial services for families, survivors, and staff;
• with the volunteer coordinator: to provide music experiences without the need for a trained therapist.
Massage may help many patients find relaxation and even pain relief, but for many patients, there comes a time when deep-tissue and traditional massage cannot be tolerated, so an eclectic combination of techniques called "healing touch" may be helpful. A gentle, noninvasive technique that uses methods from many modalities, healing touch has been shown to be useful in reducing pain, anxiety, and depression, as well as producing physical, emotional, and spiritual effects.
"In health care, we often forget the power of touch. It is so fundamental to caring for a baby, and it is no less so for the dying," says Michael Girard. "Massage and healing touch have proven to be relaxing, calming, soothing and reduce anxiety and pain. Any time anxiety can be reduced, pain is reduced."
Ironically, despite the name, healing touch does not require physical touch: The techniques can be used within a few inches of the body in the patient’s energy field. The tools are the therapist’s hands and intent, and the techniques can be applied through meditation or prayer. Under conditions of severe pain or when a patient experiences anxiety or fear about being physically touched, the techniques can still be applied effectively, he says.
The hand-generated energy work often stimulates the seven chakras, or energy centers, arrayed along the spinal column, helps ease the disease condition, and helps the patient’s energy come into balance, according to Michael Girard. The most common and almost universal response to healing touch is relaxation, which opens a pathway for patients to experience pain relief, decreased need for pain medications, easier and more restful sleep, reduced anxiety, a quickened response to medications, and fewer side effects from medications, he explains.
Researchers at Yale University in New Haven, CT, are taking a scientific approach to traditional healing modalities used at the end of life. They’ve received a $200,000 National Institutes of Health grant to investigate the benefits of meditation and massage intervention for AIDS patients approaching death.
Metta-mediation, translated literally as "loving kindness meditation," is a specific outgrowth of Buddhist forms of meditation. It often is taught through guided imagery, based on projected feeling of compassion and love toward others and healing rifts in one’s life. (See box, below.)
Anna-leila Williams, director of complementary and alternative medicine trials at Yale’s Griffin Prevention Research Center, says she thinks this type of meditation is uniquely suited to patients as they approach death.
"We felt that the peacefulness that comes with this form of mediation can bring a patient to a better quality of life and perhaps a better quality of death," says Williams.
However, AIDS patients often feel particularly physically isolated, so Williams and her colleagues designed the trial to include meditation only, meditation and massage, and massage only for some participants.
Williams notes that Sogyal Rinpoche, the Buddhist master who wrote The Tibetan Book of Living and Dying (San Francisco: Harper; 1994), drawing from thousands of years of experience, speaks of caring for the dying with love and compassion. Rinpoche has this piece of advice for those caring for patients at the end of their lives: "People who are very sick long to be touched, long to be treated as living people and not diseases."
A major part of end-of-life care is the actual death process itself and the nurture of family and loved ones after death occurs.
Circle of Life Hospice places a great deal of confidence in a process of individualized rituals and guided imagery meditations to help the patient find peace as death approaches and to give comfort to the family at death and afterward.
"We draw heavily on Native American and Eastern traditions about death as a transition to new life," says Deb Girard. "For those who are open to it, we often help people with past-life regressions before death. We also help them and their families devise individualized rituals honoring their lives as appropriate to each situation."
For a patient who is fearful of impending death, the Girards might give patients books on death and dying and the afterlife. "There has been so much documentation of near-death experiences, and we have so much experience ourselves that we can give them comfort," says Deb Girard.
She also might take the patient on a guided imagery journey toward death as being alone in a boat, gliding across a body of water, and coming to a far shore in a beautiful land.
As an aromatherapist, Deb Girard might anoint the person with an individually devised oil blend as death approaches — and then give the bottle of oil to the family to use in its own rituals after death, "as a remembrance and as a link to their memories," she says.
Another ritual often performed by Circle of Life staff is the lighting of a seven-day candle at the moment of death: a candle, which will burn for seven days, to light the spirit on its path and to keep the flame of hope alive in the hearts of loved ones.