Spence massages one of her hospice patients in this undated photo. Almost all her patients become more relaxed or report their pain has lessened after a massage, she says. — TNS
Ilyse Streim views massage for people in hospice care as “whispering to the body through touch”.
“It’s much lighter work. It’s nurturing. It’s slow,” said the licensed massage therapist.
Massage therapy for someone near the end of life looks and feels different from a spa treatment.
Some people stay clothed or lie in bed. Others sit up in their wheelchairs.
Streim avoids touching bedsores and fresh surgery wounds, and describes her work as “meditating and moving at the same time”.
She recalled massaging the shoulders, hands and feet of one client as he sat in his favourite recliner and watched baseball on TV in the final weeks of his life.
“When you’re dying and somebody touches you without expectation of anything in return, you just get to be,” she said.
Rare specialists
Massage therapists like Streim, who specialises in working with people who are dying or have an advanced form of cancer or other illness, are rare.
Fewer than 1% of therapists specialise in hospice or palliative care massage, according to research by the American Massage Therapy Association, although many more may periodically offer massage for hospice patients.
Streim has a private practice in Lafayette, Colorado, United States, and her clients pay her out-of-pocket, as US national health insurance Medicare and private insurance typically don’t cover massage therapy.
She also volunteers as a hospice massage therapist four hours a month.
It’s common for hospice organisations to use volunteer therapists for treatments, although some massage therapists – with physicians backing them – are pushing for paid positions as part of medical teams working alongside nurses and social workers.
In the hospice unit at Palo Alto VA Medical Center, in Palo Alto, California, for example, massage therapists have been integral members of the multidisciplinary team for decades, said Stanford University’s palliative care education and training programme founding director and professor of medicine Dr VJ Periyakoil.
Shrinking numbers
The Covid-19 pandemic made the recruitment of specialists for this intimate work – both paid and volunteer – more difficult, as the pool of massage therapists shrank amid school closures and exits from the profession.
There are up to 10% fewer massage therapists today than before the pandemic, according to the US organisation Associated Bodywork & Massage Professionals president Les Sweeney.
“It’s still hard for us to hire and recruit therapists,” said Kerry Jordan, operations director at Healwell, a non-profit organisation that trains and employs massage therapists to work in hospitals in the Washington, DC, area.
For three weeks in April 2020, licensed massage therapist Cindy Spence, who works at Faith Presbyterian Hospice in Dallas, could not massage patients due to the state’s lockdown orders.
Then, the state granted an allowance for massage therapists like her, working in medical settings under supervision, to resume giving massages.
But it took several months for many therapists to return to work, and some didn’t return at all, she said.
“The pandemic was not kind to massage therapists,” she said.
“And so we have lost a lot of people like me who are of an age and experience level that would really be called to and suitable” for oncology, hospice and palliative massage.
“We need to get more therapists trained,” she said.
She described receiving several calls each month from people who have found her name online.
It has become harder since Covid-19 to find a therapist to refer them to, she said.
Depending on volunteers
At TRU Community Care, which operates in several locations in Colorado, volunteer services supervisor Wendy Webster said massages are a top request from patients and their families, but they’re limited in how many sessions they can offer, with only two volunteer massage therapists.
(A third volunteer did not return after the pandemic.)
Finding new massage therapist volunteers is challenging, she said, in part because they can earn money in other settings and “they’re coming to us for free”.
Thirty years ago, TRU Community Care’s non-profit status was the norm, but now the majority of hospices are for-profit, with growing investment from private equity.
Despite that shift, hospices still rely heavily on volunteers.
Medicare pays for at least six months of hospice for a patient on the condition that providers use volunteers for at least 5% of the patient-care hours worked by paid staff and contractors.
Sometimes, those volunteer hours are filled by massage therapists.
“All hospices, not-for-profit or for profit alike, should aim to include medically-trained massage therapists as part of best holistic care,” Dr Hunter Groninger, a professor of medicine at Georgetown University who directs palliative care at MedStar Washington Hospital Center in Washington, DC, wrote in an email.
Employing these specialists is beneficial and does not diminish the important service of volunteers, particularly in end-of-life care, he added.
More studies on the impact of specialised massage could enact changes in the field, said Healwell founder and executive director Cal Cates.
A wanted role
In a recent clinical trial of 387 patients in palliative care at MedStar, including some nearing the end of their lives, Prof Groninger, Cates, Jordan and other co-authors found that massage therapy improved quality of life.
Despite new research on the benefits of massage, Cates said, many hospices bring on volunteers who don’t have advanced training, because hospices may not know that specialised training – such as the kind Healwell offers – exists.
Streim, who paid for her own classes in oncology and lymphatic massage, said that investment in education qualified her for a six-year career as an oncology massage therapist at Good Samaritan Medical Center’s Center for Integrative Medicine in Lafayette, and later, her own private practice.
She teaches classes in adapting massage for the elderly and those with illnesses at Boulder Massage Therapy Institute.
In her 39 years as a therapist, Streim has done it all: volunteer, staff, entrepreneur, teacher.
Like Streim, Spence has continually redefined her role.
She began in private practice before becoming an employee of a large hospice agency in which she travelled across nine counties in Texas, giving thousands of massages to people dying in their homes, assisted living communities and skilled nursing homes.
Today, at Faith Presbyterian Hospice, she is one of three licensed massage therapists on staff and fully integrated as an employee of the organisation, which has more than 100 patients.
“Those of us who do this work have made big investments in our profession and I’m glad to see that we can be paid for it,” she said.
Spence collects data on how patients rate their pain on a scale of one to 10 before and after a massage.
Most fall asleep during the massage, which she takes as an indication that their pain has lessened or they became more relaxed.
Of those who stay awake, almost all say their pain subsided significantly or went away completely.
That kind of positive engagement with providers is more urgent than ever since the pandemic, Prof Groninger said.
Spence agreed: “The pandemic taught us all, in a very painful way, what it’s like to be deprived of human touch and human connections.”
Sometimes the nursing staff at Faith Presbyterian will roll a bed out onto the patio so a patient can hear the sounds of nature and the fountain gurgling during Spence’s massage.
There is more teasing and laughter than she would have imagined.
For patients unable to speak, Spence watches their reactions carefully: a deep exhalation or the face and body softening.
Sometimes it’s tears running down their cheeks.
“It’s profound, helping someone find safe breaths along this very difficult dying journey,” she said. – KFF Health News/Tribune News Service
KFF Health News, formerly known as Kaiser Health News (KHN), is a US national newsroom that produces in-depth journalism about health issues and is one of the core operating programmes of KFF – an independent source for US health policy research, polling and journalism.
