(Editor’s note: This story is part of a special report forThe John A. Hartford Foundation. In 1998, Cindy Spence watched in horror as her hospitalized, cancer-stricken father-in-law was denied the massage he desperately requested. Then and there, the Texas woman’s career path became clear.
“He entered a pain-filled and despondent state in which the only thought that gave him any pleasure at all was to have a hospice therapist come to his hospital room,” Spence recalls. But in 1998, massage therapy was contraindicated for cancer patients. The thinking was that massage would spread cancer cells or might break a tumor.
“That just felt wrong to me,” Spence says.
Now Spence is one of hundreds of hospice massage therapists nationwide, working at the T. Boone Pickens Center at Faith Presbyterian Hospice in Dallas. MK Brennan, president of the Society for Oncology Massage, estimates that at least 250 U.S. hospitals provide hospice massage, and the number is growing.
“Ever since the 1940s and ’50s, we’ve been working to establish ourselves as health care providers rather than adult entertainers,” Brennan says.
This perception had changed little when massage therapist Irene Smith basically launched the hospice massage field in 1982. Nor had the other part of the equation — hospice care — caught on.
“You had two topics within the field that have been very scary to the general public,” Smith says. “Massage was not a mainstream modality of care for many, many years, and death has never been a dinner-table conversation until the past decade.”
It didn’t help that, at least literally, we were not a “touchy-feely” society.
“Touch has been very misunderstood,” Smith says. “Touch is in the forefront of neuroscience, with more information coming to the mainstream public in relation to the positive outcomes of being touched. More and more people are becoming aware of its benefits from birth to death.”
That’s why Smith founded the influential California-based Ever-flowing program, whose mission is “to teach mindful touching and the practice of therapeutic presence as opportunities to recognize and express tenderness in caregiving.”
The Public Presses the Issue of Hospice Massage
Integration of massage at medical facilities often requires public demand. As hospice massage therapists toiled as freelancers and volunteers, patients and their families saw the benefits of the practice and increasingly have come to insist on it.
“We have seen a definite acceptance and growth for requesting massage,” says Meg Robsahm, an independent hospice massage therapist in Rochester, Minn. “We have also seen an increase in hospice companies adding it to their service menus simply because of demand.”
“I started as a volunteer. The patients were beginning to ask for this, so all the big [facilities] realized they couldn’t provide coverage with just volunteers,” Herman says. “Insurance wouldn’t cover it, so we had to come up with donations, philanthropy or pulling it out of little corners of the budget.”
Still, Brennan says, staff positions for hospice massage therapists remain relatively limited, and there are few signs that insurers will start including it in their standard coverage. On the contrary, independent massage therapists are strongly advised to buy liability coverage to work in hospice care.
Touching in Many Ways
At least for now, advocates for hospice massage have research on their side.
According to the AMTA, a 2014 study focused on integrating massage therapy into palliative care found “statistically significant changes in pain, anxiety, relaxation and inner peace of patients, decreasing both pain intensity and anxiety while increasing the patients’ sense of relaxation and inner peace.” (Palliative, or comfort, care is appropriate for people of any age at any stage of a serious illness. Hospice care is generally for those who have six or fewer months to live and who are no longer receiving active treatment.)
The study’s results are why these therapists recognize that their role is, as Smith puts it, “to comfort — not cure — to validate, to honor, to soothe and to respect.”
Other therapists often point to the wide-ranging, even holistic nature of their work.
“The dying process involves physical, spiritual, mental and emotional pain,” Spence says. “RNs can work with the physical pain, chaplains with the spiritual pain and social workers with the mental and emotional pain. I feel that massage and music therapy are the only ones that treat all of those modalities.”
Getting the Family Involved
Smith and her peers strive to have family members present during hospice massage sessions, not just to observe but to participate — to learn how to be gentle with touch.
“Families sometimes have no way to connect with their loved ones, and massage can offer that connection,” Robsahm says. “It can bring a sense of peacefulness in the end stages.”
Families are generally relieved that their loved ones are finding relief and relaxation.
“Especially as someone is close to death — say 48 hours — if I’m in the midst of that family and they’re interested, I will have them sit next to me and have them do what I do,” Robsahm says. “At a certain point, my time will be up, and they will get to be the person to hold their hand, stroke their neck, put oil or lotion on their feet.”
The patient and the family are not alone in reaping something profound out of the experience, according to Spence.
“I have made a commitment to find every ounce of joy,” Spence says. “I knew when I came in that there would be a lot of sorrow, but I didn’t know I would laugh with patients and their families as much as I have.”
Or, as Robsahm puts it: “It moves beyond physical contact. We touch people’s bodies, and in the end, we touch them in their soul.”