When Ann Catlin, founder of the Center for Compassionate Touch and an expert in the field of massage therapy in eldercare and hospice, asked attendees at AMTA National Convention to name three things they needed in order to be prepared to work with hospice patients, several hands immediately went up.
Compassion was said by a lot of massage therapists in the room, as well as understanding and sympathy. According to Catlin, these are all good answers. “Hospice is not a place,” Catlin explains. “Hospice is a concept of care.” From this perspective, massage therapy has a great deal to offer these patients. Following, you’ll learn about how massage is used with patients during end-of-life care.
Catlin is clear that hospice isn’t all about dying. “Hospice is about providing comfort and dignity at the end of life,” she says, quickly clarifying: “You are there to help people live until they die. Quality of life is the goal.”
And that’s an important distinction for most people who have difficulty thinking about hospice care outside the context of death.
According to Catlin, almost 50 to 80 percent of those admitted to hospice are in pain, so pain and symptom management are central to working with these clients. “There’s also an emotional and social component to the work,” explains Catlin. “You need to be aware of the impact the disease is having on the patient and their family.”
Remember, Catlin explains, that pain is multidimensional—not just a physical sensation, but instead a combination of the actual sensation of pain and a variety of other factors. “When you ask a hospice patient whose pain is being managed if they are in pain, they’ll more often than not answer no,” she says. “But, if you ask them if they’re suffering, the answer is often yes.”
What You Need to Succeed in Hospice Care
“Knowledge gives us a foundation from which to act,” Catlin says. “We need to be informed not only about our clients, but also about the organizations we work with.”
According to Catlin, hospice started as a service primarily for cancer patients. Today, cancer is less than half of hospice admissions. “Some patients are admitted for respiratory problems, while others are admitted with no specified debility, meaning there’s no known reason for their decline,” Catlin explains. “Heart disease is also a fairly prevalent diagnosis seen in hospice.”
The dying process
To be effective in the hospice environment, massage therapists need an understanding of the dying process and what they can expect. Otherwise, Catlin explains, some of what happens might seem frightening or overwhelming.
According to Catlin, early changes in the dying process might not be noticeable. “Somebody might be admitted to hospice while they’re still in relatively good shape, to put it plainly,” she explains. “They may still be mobile and able to dress themselves.”
Next is the pre-active stage, which lasts two weeks, on average. Here, you might begin to notice some restlessness. For example, the patient might not be comfortable in a chair or in bed. They may also have some confusion and an increased need for sleep. Often, patients will begin to withdraw during this stage, though they may begin asking for family. “Becoming more inwardly focused is a very natural part of the process,” Catlin says.
In the active stage, there will be changes in the patient’s breathing, and you may notice congestion in the back of the throat. “Generally, the active stage lasts approximately three days,” Catlin says. “During this time, the body is shutting down.” For example, blood pressure will decrease, as will the patient’s movement. Often, too, their extremities are cold to the touch, and there may be some blotchiness in their hands and feet. “They may no longer have the ability to swallow,” Catlin adds.
Part of a whole
As with much of massage therapy that happens in health care settings, working with hospice patients is more of a team effort than an individual endeavor. “No decision you make do you make in a vacuum,” advises Catlin. “It’s a team decision, and as part of the team, you’re required to document services and attend team meetings.”
Sometimes, too, you’re going to need to educate other health care professionals in the environment about what you are doing. Catlin encourages massage therapists to use the term focused touch when describing what they do. “You can tell medical staff ‘There may be times when it looks like I’m just sitting there holding someone’s hand,’” explains Catlin. “Then, you might describe where you’ve used focused touch.”
Document your work
Putting your work in writing is a good practice, for the client and their family, the other professionals you work alongside, and yourself. You might find, for example, that you can use your notes to further educate other health care professionals about what you do, putting into context the special skill set you have to offer. Typically, you’ll document the following:
- Client’s condition: Here, be specific and focused. You might say: “Client was lying in bed, daughter at bedside.” Be objective about what you observe, being careful not to insert any personal impressions. You’ll also want to note any changes in the client’s condition you notice since you last worked with them.
- Actions: Describe how you’ve worked with the client. If you’ve instructed family members on how to work with the patient, include that information, as well.
- Reaction of client and caregiver: These sessions have the potential to be very emotional, so if that’s the case, record that information in your notes. Also, document how your work impacted the client. You might say, for example: Patient was very relaxed and comfortable.
- Follow up: If you have future plans to see the patient, or have a regular schedule you keep, mention that in your notes. Many times, especially during the later stages, your visits will be at the request of family members of the patient.
Massage in the Hospice Environment
Where you practice
You might assume that hospice is connected with hospitals specifically, but that’s not true in most cases. “Eighty percent of hospice service is community based,” explains Catlin. “That means going into private homes or wherever the person resides.”
That said, however, hospice care is also performed in the hospital setting, too. “Hospice provides palliative care in hospitals,” explains Catlin.
"Massage as we know it is no longer indicated or wanted,” Catlin says of working with hospice patients. “In these later stages, it’s no longer about massage.”
During the pre-active stage of the dying process, Catlin recommends sensitive massage of the arms, legs, feet and hands, as well as slow stroke back massage. According to Catlin, back massage should be done with the patient in side-lying position applying long, alternating strokes to the large muscle groups along either side of the spine. Massage therapists should stroke down the body from the upper to lower back. This technique promotes deep relaxation and can help patients who are having trouble falling asleep.
For the active stage of the dying process, massage therapists need to adjust their expectations—both of themselves and the patient. “It’s reassuring for the patient to have someone bedside with just a little focused touch,” explains Catlin.
For these patients, attentive touch or holding is good, particularly if the person is frail and can’t tolerate touch. Massage therapists might also move a part of the patient’s body for positional change and to ease pressure. “You can change the adjustment of the bed or add support of pillows under the arms or legs,” Catlin adds. “You may incorporate gentle stretching if tolerated.”
Along with adjusting your expectation of massage, you’ll also need to think a little differently about your role in the hospice environment. “We’re not about fixing anything,” Catlin says. “We need to let go of our desire to fix something because how we approach a session makes a difference.”
First, says Catlin, massage therapists need to focus on the individual within the patient. “You need to look beyond disease and beyond the condition,” she explains. Imagine the whole individual you’re working with despite their condition. When you do, you remind them that they’re still who they are, they’re worthwhile and still living.” You may fi nd this idea diffi cult, but being able to see the patient as more than their disease is an integral part of working in hospice.
With hospice patients, massage therapists are also going to have to give up some control of the work and environment, instead being open to the moment as it unfolds. “There are going to be a lot of things that we can’t do anything about,” Catlin says.
The Importance of Self-Care
No matter the environment, self-care is a top priority of massage therapists. Although the work you do with hospice patients may not be as physically demanding as in other working environments, massage therapists still need to keep self-care at the forefront if for no other reason than the work is potentially emotionally taxing.
“You will lose every client you have,” Catlin says plainly. “Finding acceptance of that is key to self-care and the work you do with the patient.” Part of this acceptance, according to Catlin, is being softer with yourself. “Massage therapists need to be able to accept when they feel angry or sad,” she explains. “They need to be able to forgive themselves when they don’t do something.”
Some massage therapists may find that having a ritual that’s connected to closure is helpful for their self-care regimen. “It can be something very simple, but can be powerful in terms of self-care” encourages Catlin. “You might choose to pick up stones or plant fl owers, or light a candle. The key is doing something that brings closure and allows you to acknowledge your own feelings.”
Dimensions of Pain
Of course there is a physiological aspect to pain, including the actual physical sensation and the person’s accompanying response.
People often have an emotional response to pain, as well, including changes in mood.
Cognitive responses include patients who might anticipate pain based on memories of when they had pain in the past.
There are often social implications for patients dealing with pain, too. “People who are in pain chronically or acutely tend to withdraw from people,” Catlin says.