Of the countless painful decisions surrounding a loved one’s end-of-life care, among the trickiest is how to provide physical comfort in a way that also provides a dignified ending.
“For end of life, the opioids are very important for pain management, but they do leave people very sedated,” said researcher and physician Josephine Briggs, who heads the National Institutes of Health’s National Center for Complementary and Alternative Medicine. “Some people are looking for adjuncts to help with that.”
Increasingly, those adjuncts include acupuncture, massage and other complementary therapies.
“We’re seeing increased interest in complementary approaches in hospice settings,” Briggs says, “and recognition by patients and caregivers that some of these approaches may be helpful in this stage of life.”
A comprehensive survey by the Centers for Disease Control and Prevention in 2007 found that 41 percent of hospice care centers offered complementary and alternative therapies (CAT), had a CAT provider on staff or under contract, or both.
Those numbers have likely gone up, experts say.
“It’s certainly been gaining momentum in the past four of five years,” says Dr. Porter Storey, executive vice president of the American Academy of Hospice and Palliative Medicine.
“There are patients who are not getting adequate relief from usual medications,” Storey said. “Sometimes it’s people who don’t tolerate medicine well or get bad side effects and still have the pain or nausea. And sometimes it’s people who value mental clarity so much they would rather have the symptoms than any kind of drowsiness.
“We try really hard to make sure whatever we’re doing matches the patient’s goals and desires and is most likely to provide the most relief with the fewest side effects.”
Acupuncture and appetite
Acupuncture proves particularly helpful with nausea, Briggs says.
“The affects of acupuncture on nausea are quite well-documented,” she said. “If you’ve experienced something that made you sick to your stomach and you have smells or a place that reminds you of that experience, the nausea feeling can come back. Nausea of expectation is a real phenomenon, so some people are left with nausea or vomiting from chemotherapy or even (anticipating) chemotherapy, and there is very strong, very rigorous data showing that acupuncture tends to break that cycle.”
Acupuncture may also help with proper digestion, a process with which morphine and other pain medications can interfere.
Grainne McKeown, a licensed acupuncture therapist, worked in a Nepalese clinic before opening her own practice in Chicago. She says she used acupuncture to help patients relieve constipation and vomiting.
“I treated a woman who was in the late stages of HIV who had so much vomiting and nausea and kept getting skinnier and skinnier,” McKeown said. “They would give her morphine for her pain, which made her constipated. I was able to give her acupuncture, and she was able to have regular bowel movements and help her digestion, which makes a huge difference at that stage of life where the whole goal is just to keep someone comfortable.”
With a little training, some alternative therapies can be administered by a patient’s family members,
“Something that’s very helpful in many families is to incorporate some massage therapies,” Briggs said. “A massage therapist can help the family members learn some skills that involve touch that can help achieve relaxation and make the dying patient more comfortable.”
She emphasizes the need for narcotics, particularly for pain management. (“I would be very worried about suggesting people should avoid proper pain management — the opioids, morphine, fentanyl.”) But she encourages families to ask their physicians about incorporating alternative therapies to work alongside conventional approaches.
“I think turning to your hospice and asking for information about massage, music therapy and guided imagery is important and can really help caregivers as well as patients,” Briggs said.
Guided imagery is a system of directing your thoughts and imagination toward a state of relaxation or focus. WebMD cites a common example: “Imagine an orange or a lemon in great detail — the smell, the color, the texture of the peel. Continue to imagine the smell of the lemon, and then see yourself taking a bite of the lemon and feel the juice squirting into your mouth. Many people salivate when they do this. This exercise demonstrates how your body can respond to what you are imagining.”
“One of the good things about many of the complementary approaches is they’re generally so benign that people can use them at any time, and they’re one of the few things we can recommend to family members who are not under our care,” Storey said. “Oftentimes the wife of a patient who is anxious or distressed can download some guided imagery files or listen to some meditative music and actually feel a lot better.”
The availability of complementary and alternative approaches varies widely from facility to facility and region to region, and hospices are more likely to offer the therapies than hospitals.
A 2011 survey conducted by the American Hospital Association found that 42 percent of U.S. hospitals offer one or more CAT services, including acupuncture, homeopathy, massage therapy and herbal medicine. That statistic is up from 37 percent of hospitals in 2007.
But if you’re caring for a patient at a hospital without CAT staffing on site, your options are likely slim.
“Hospitals tightly control who practices there with very restrictive credentialing requirements,” Storey said. “This may limit their liability for mishaps, but it severely restricts access to complementary and alternative medicine therapies. Even if you wanted to pay privately for a complementary or alternative therapy you would likely not be able to get it in a (restrictive) hospital.”
Families should be proactive in broaching the topic though, regardless of the setting, Storey says.
“Hospitals can get narrowly focused on surgery and intensive care, as they should,” he said. “But it’s good for families to know what’s available and ask for additional help, particularly in areas where we know alternative therapies are most effective.”
And if families don’t get anywhere in the hospital, they can consult with their dying loved one’s doctor about a possible transition to hospice.
The mind-body connection, after all, is a critical one to honor at the end of life.
“There’s so much anxiety, fear of what’s coming next, possibly regrets about your life,” McKeown said. “Anything that helps your body, not just for one hour, but to keep your mind and body in the present and accept what’s to come can really help people face those final days with more strength and peace and calm.”
Videos illuminate realities of end-stage procedures
End-of-life choices and treatment decisions are rarely discussed in the medical community, despite expert advice meant to encourage communication, studies suggest. As a result, many patients spend their final days receiving invasive treatments that they might not have chosen if they had known more about them.
However, there is a unique series of videos designed to shed light on the reality of aggressive end-of-life treatments, which are often portrayed on television as being more successful than they are.
Studies using these simple but realistic videos have shown that patients with life-limiting illnesses are likely to change their preferences from invasive treatment to comfort-based approaches after watching the videos, which range from 3 to 10 minutes.
The 25 videos demonstrate common end-of-life hospital procedures, including CPR, breathing machines, blood transfusions and bronchoscopies.
Dr. Angelo Volandes, an internist and researcher at Harvard Medical School and Massachusetts General Hospital and co-founder of the nonprofit foundation Advance Care Planning Decisions (acpdecisions.org,) explains why the educational videos can supplement —but not supplant — patient-doctor relationships.
The videos are only available to medical professionals, and patients view them first with a doctor in a clinical setting. Later, the patient can also watch them with their families. Eventually, Volandes hopes the videos will be available to people outside the medical profession. “The whole point is to change the culture about how we have these conversations in our society,” he said.
Below is an edited transcript of our talk with him.
Q: Why are the videos effective?
A: Pictures speak a thousand words. The videos speak hundreds of thousands of words. We’re a visually literate society, but we are still talking to patients as Hippocrates did 2,000 years ago. I always make it clear the videos are not meant to replace the patient-doctor relationship; it’s to reinforce it. It’s about empowering, giving patients the means to understand. Doctors aren’t always trained to have these conversations.
Q: Do the videos coerce patients?
A: We ask patients whether they were comfortable watching the videos. In a study published in the Journal of Clinical Oncology, 97 percent said they were. What’s really remarkable though is the finding in our studies that more than 95 percent of patients said they would recommend the video to other patients. That’s the gold standard. If they’re comfortable, find it helpful and would recommend it to others, that suggests it’s fair and impartial.
Q: How can watching the video help change a patient’s mind?
A: It gives the patients greater understanding that when they have a life-limiting illness, many interventions (such as CPR) don’t have a great likelihood of success. They think, “Why put my family through that when my chance of surviving is so low?” We don’t do a good job of explaining interventions and what happens when you have something like cancer. Most patients believe they will be back to normal. The videos help them understand what the procedures look like. They standardize the conversation and make sure you have the information you need to make decisions.
— Julie Deardorff, Chicago Tribune