Massage Therapists Ease Pain of Hospice Patients — But Are Hard to Find

By Kate Ruder, KFF Health News

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 Streim, a 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 favorite 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,” said Streim.

Massage therapists like Streim, who specializes in working with people who are dying or have an advanced form of cancer or other illness, are rare. Fewer than 1% of therapists specialize 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 and her clients pay her out-of-pocket, as 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 organizations to use volunteer therapists for treatments, though 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 VJ Periyakoil, a professor of medicine at Stanford University and the founding director of its palliative care education and training program.

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 Les Sweeney, president of Associated Bodywork & Massage Professionals.

“It’s still hard for us to hire and recruit therapists,” said Kerry Jordan, operations director at Healwell, a nonprofit that trains and employs massage therapists to work in hospitals in the Washington, D.C., area.

‘We Need to Get More Therapists’

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, Spence said.

“The pandemic was not kind to massage therapists,” Spence 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 to find a therapist to refer them to, Spence said.

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, said Webster, 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 nonprofit 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,” Hunter Groninger, a professor of medicine at Georgetown University who directs palliative care at MedStar Washington Hospital Center in Washington, D.C., 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.

Benefits of Massage

More studies on the impact of specialized massage could enact changes in the field, said Cal Cates, founder and executive director of Healwell, which, since 2009, has trained 500 therapists in hospital-based and oncology massage, as well as in how to work collaboratively with doctors and nurses.

In a recent clinical trial of 387 patients in palliative care at MedStar, including some nearing the end of their lives, 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 specialized 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 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 traveled 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 organization, 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 1 to 10 before and after a massage. Most fall asleep during the massage, which she takes as an indication 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, 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 is a national newsroom that produces in-depth journalism about health issues.

Hospice Patients Getting Fewer Opioids for Pain Relief

By Pat Anson, PNN Editor

Overzealous enforcement of opioid guidelines has led to a significant decrease in opioid prescribing to terminally ill patients being admitted to hospice care, according to a new study that found some dying patients may have had their pain undertreated.

The study, led by researchers at the Oregon State University College of Pharmacy, looked at prescription records for over 2,600 patients discharged from hospitals to hospice care from 2010 to 2018. Nearly 60% of the patients had a cancer diagnosis.  

In 2010, researchers say about 91% of the patients were receiving opioids for pain at discharge to hospice. But by 2018, only 79% were getting opioid medication.

The goal in hospice care is to minimize the suffering of dying patients and to maximize their comfort and quality of life. Patients in hospice or palliative care are generally exempt from federal and state opioid prescribing guidelines.

"Indiscriminate adoption or misapplication of these initiatives may be having unintended consequences," said lead author Jon Furuno, PhD, an associate professor and interim chair of the Oregon State Department of Pharmacy Practice. "The CDC Prescribing Guideline and the other initiatives weren't meant to negatively affect patients at the end of their lives, but few studies have really looked at whether that's happening. Our results quantify a decrease in opioids among patients who are often in pain and for whom the main goal is comfort and quality of life."

The CDC’s opioid guideline specifically says it is not intended for patients undergoing active cancer treatment, palliative care, or end-of-life care.” But in practice, many of those patients are being forced to follow the CDC’s recommended daily dose limit of 90 morphine milligram equivalent (MME). Some get even less.  

“I'm a cancer patient on palliative care and being forced tapered off to 20 mg when I was on 100 mg for 20 years and working, taking care of my family and myself. Now I'm in bed all day in severe pain,” said one patient who responded to PNN’s recent survey on the CDC guideline.

“My daughter is in palliative care and been on 330 MME daily for 8 years. Now her palliative care doctor wants to force taper her to 50 MME a day because he says the state is changing rules,” a mother told us. “She’s terrified of being forced to taper. I’m going to lose my daughter because she can’t be in intractable severe pain. It’s inhumane and cruel to do to a patient who is never going to get better and has a degenerative condition.” 

“I have stage IV metastatic lung cancer, it is terminal.  I have gone months without pain medication after being jerked off medication completely. I have struggled to find a doctor to treat my pain,” another patient told us. “I am in total shock that cancer patients have to suffer like this. These guidelines have terrified doctors. If they’re too scared to treat cancer pain, what pain will they treat?”

According to Furuno, more than 60% of terminally ill cancer patients have "very distressing pain.” He and his colleagues found that while opioid prescribing declined for patients heading into hospice, there was more prescribing of less potent, non-opioid analgesics.

"Sometimes non-opioids alone are the best choice, or non-opioids in combination with opioids," Furuno said. "But it's important to remember that non-opioids alone are also not without risk and that delaying the start of opioid therapy may be delaying relief from pain.”

The study findings were published in the Journal of Pain and Symptom Management.

Painkillers Stolen from Dying Patients

By Melissa Bailey, Kaiser Health News

Nothing seemed to help the patient — and hospice staff didn’t know why.

They sent home more painkillers for weeks. But the elderly woman, who had severe dementia and incurable breast cancer, kept calling out in pain.

The answer came when the woman’s daughter, who was taking care of her at home, showed up in the emergency room with a life-threatening overdose of morphine and oxycodone. It turned out she was high on her mother’s medications, stolen from the hospice-issued stash.

Dr. Leslie Blackhall handled that case and two others at the University of Virginia’s palliative care clinic, and uncovered a wider problem: As more people die at home on hospice, some of the powerful, addictive drugs they are prescribed are ending up in the wrong hands.

Hospices have largely been exempt from the national crackdown on opioid prescriptions because dying people may need high doses of opioids. But as the nation’s opioid epidemic continues, some experts say hospices aren’t doing enough to identify families and staff who might be stealing pills.

And now, amid urgent cries for action over rising overdose deaths, several states have passed laws giving hospice staff the power to destroy leftover pills after patients die.

Blackhall first sounded the alarm about drug diversion in 2013, when she found that most Virginia hospices she surveyed didn’t have mandatory training and policies on the misuse and theft of drugs. Her study spurred the Virginia Association for Hospices and Palliative Care to create new guidelines, and prompted national discussion.

Most hospice patients receive care in the place they call home. These settings can be hard to monitor, but a Kaiser Health News review of government inspection records sheds light on what can go wrong. According to these reports:

  • In Mobile, Ala., a hospice nurse found a man at home in tears, holding his abdomen, complaining of pain at the top of a 10-point scale. The patient was dying of cancer, and his neighbors were stealing his opioid painkillers, day after day.
  • In Monroe, Mich., parents kept “losing” medications for a child dying at home of brain cancer, including a bottle of the painkiller methadone.
  • In Clinton, Mo., a woman at home on hospice began vomiting from anxiety from a tense family conflict: Her son had to physically fight off her daughter, who was stealing her medications. Her son implored the hospice to move his mom to a nursing home to escape the situation.

In other cases, paid caregivers or hospice workers, who work largely unsupervised in the home, steal patients’ pills. In June, a former hospice nurse in Albuquerque, N.M., pleaded guilty to diverting oxycodone pills first by recommending prescriptions for hospice patients who didn’t need them and then intercepting the packages with the intention of selling the drugs herself.

Hospice, available to patients who are expected to die within six months, is seeing a dramatic rise in enrollment as more patients choose to focus on comfort, instead of a cure, at the end of life.

The fast-growing industry serves more than 1.6 million people a year. Most of hospice care is covered by Medicare, which pays for hospices to send nurses, aides, social workers and chaplains, as well as hospital beds, oxygen machines and medications to the home.

There’s no national data on how frequently these medications go missing. But “problems related to abuse of, diversion of or addiction to prescription medications are very common in the hospice population, as they are in other populations,” said Dr. Joe Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine, a professional association for hospice workers.

“It’s an everyday problem that hospice teams address,” Rotella said. In many cases, opioid painkillers or other controlled substances are the best treatment for these patients, he said. Hospice patients, about half of whom sign up within two weeks of death, often face significant pain, shortness of breath, broken bones, or aching joints from lying in bed, he said. “These are the sickest of the sick.”

Earlier this year in Missouri, government investigators installed a hidden camera in a 95-year-old hospice patient’s kitchen to investigate suspected theft. A personal care aide was charged with stealing the patient’s hydrocodone pills, opiate painkillers, and replacing them with acetaminophen, the active ingredient in Tylenol. Hospice nurses in Louisiana and Massachusetts also have been charged in recent years with stealing medication from patients’ homes.

But many suspected thefts don’t get caught on hidden cameras, or even reported.

In Oxnard, Calif., in 2015, a person claiming to be a hospice employee entered the homes of five patients and tried to steal their morphine, succeeding twice. The state cited the hospice for failing to report the incidents.

In Norwich, Vt., in 2013, a family looked for morphine to ease a dying patient’s shortness of breath. But the bottle was missing from the hospice-issued comfort care kit. The family suspected that an aide, who no longer worked in the home, had stolen the drug, but they had no proof. State inspectors cited the hospice, Bayada Home Health Care, for failing to investigate.

David Totaro, spokesman for Bayada Home Health Care, told KHN that situations like that are “very rare” at the hospice, which takes precautions, such as limiting medication supply, to prevent misuse.

There is no publicly available national data on the volume of opioids hospices prescribe.  But OnePoint Patient Care, a national hospice-focused pharmacy, estimates that 25 to 30 percent of the medications it delivers to hospice patients are controlled substances, according to Erik Jung, a vice president of pharmacy operations.

Jung said company drivers deliver medications in unmarked cars to prevent attempted robberies, which have happened on occasion.

Little Oversight of Hospice Medication

Two recent studies suggest hospice doctors and social workers across the country are not prepared to screen patients and families for drug misuse, nor to address the theft of pain medication.

For family members struggling with addiction, bottles of pills lying around the house can be hard to resist. Sarah B., a 43-year-old construction worker in Vancouver, Wash., said when her father entered hospice care at his home in Oregon, she was addicted to opioids, stemming from a hydrocodone prescription for sciatica.

After he died, hundreds of pills were left on his bedside table. She took them all, enough Norco, oxycodone and morphine to last a month.

“I have some shame about it,” said Sarah, who declined to give her full last name because of the nature of her actions.

Sarah, who was one of her father’s primary caretakers, said the hospice “didn’t talk about addiction or ask if any one of us were addicts or any of that.”

“No one gave us instructions on how to dispose of all the medications that were left,” she added.

Medicare requires hospices to establish a safe way to administer drugs to each patient — by identifying a reliable caregiver, staff member or volunteer to manage the drugs or, if need be, relocating the patient. And it requires hospices to set policies, and talk to families, about how to safely manage and dispose of medications.

But there’s little oversight: Unlike nursing homes, hospices may go years without inspection, and even when they are cited for noncompliance, they rarely face any consequence except coming up with a plan to improve.

And in most states, hospices have little control over the pills after a patient dies. The U.S. Drug Enforcement Administration encourages hospice staff to help families destroy leftover medications, but forbids staff from destroying the meds themselves unless allowed by state law. Leftover pills belong to the family, which has no legal obligation to destroy them or give them up.

However, some states are taking action. In the past three years, Ohio, Delaware, New Jersey and South Carolina have passed laws giving hospice staff authority to destroy unused drugs after patients die. Similar bills moved forward in Illinois, Wisconsin and Georgia this year.

In Massachusetts, one of the states hit hardest by drug overdose deaths, VNA Care Hospice and Palliative Care advises families to empty leftover pills into kitty litter or coffee grounds before disposal — a common practice to prevent reuse, since flushing them down the toilet is now considered environmentally hazardous.

But families “don’t have to comply,” said VNA Care medical director Dr. Joel Bauman. “Our experience is maybe only half do. We don’t know what happens to these medications. And we have no right, really, to further inquire.”

Hospices across the country told KHN they take precautions, including counting pills when nurses visit the homes, limiting the volume of each drug delivery, giving families locked boxes for medication and giving patients random urine tests. They also said they prescribe medications that are harder to misuse, such as methadone.

Some, like VNA Care, have also started screening families of patients for history of drug addiction, and writing up agreements with families outlining the consequences if drugs go missing.

But “there’s so much moral distress” about punishing dying patients for family members’ actions, said Bauman. He said he tries to avoid doing that: “Why should we fire a patient for having inappropriate pill counts, when it may not be their fault in the first place?”

Though Blackhall helped spark a national discussion about hospice drug diversion, she said she’s also worried about restricting access to painkillers. Hospices must strike a balance, she said.

“It’s important to treat the horrible suffering that people have from cancer,” said Blackhall. But substance abuse is another form of suffering which is “horrible for anyone in the family or community that might end up getting those medications.”

Kaiser Health News (KHN), a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.