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Massage Therapy at the End of Life

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Massage Therapy at the End of Life

Today's hospices are adding new therapies to bring their patients comfort and relief in their final days. One of these therapies is massage. We talked to Tami Legler-Roberts, a hospice massage therapist, about how she discovered a passion for helping patients at the end of their lives.

Tami has been a massage therapist with Heartland Hospice for more than five years, coming to the position with eight years of experience in deep tissue and sports massage, including a stint as the massage therapist for the Quad City Steamwheelers, a professional arena football team. She sees six to 10 hospice patients each week.

Read our interview to find out why Tami says of hospice massage, "I didn't know that I could, and now I'd rather not do anything else."

When you first started doing hospice massage, did you have to think about, "Do I want to do this? Am I nervous about this?" Were you nervous when you got started?

Extremely. Yes. I was very hesitant, but I knew I was willing to try.

So you didn't really give it a whole lot of second thought before deciding to do it?

No, I didn't. I knew I was going to try. More than anything, because I needed that income. But I was also very nervous about how I would react to being in the hospice environment. I knew I didn't deal well with people who had died in my own past, so it was very nerve-wracking to start.

How has that changed? How quickly did it change?

My nerves went away pretty quickly after my first staff meeting. There was a story told during my first staff meeting, and when they told that story, I was like, "OK, I'm good." Basically, what it came down to was that at each staff meeting every month, at the end of the meeting, there's a bereavement time, where we go through each patient who has passed away since the previous staff meeting, individually, and we share memories about those patients. It was during that time when I realized: "I can do this." And I love the bereavement time. It's probably one of my favorite things.

What about when you started working with your first patients? Was there still some nervousness there, or were you feeling ready?

There was some nervousness, I guess. It was like, "OK, when's my first patient going to pass away, and how is it going to affect me once I know that person personally?" But I was prepared for it – "OK, I know what's going to happen, and I'll have to figure it out."

What I wasn't prepared for was that the first patient I lost was within a week of Christmas. And then within that same week, I lost two more. I kind of freaked out a little bit because I didn't get to ease into it at all. But it did get better quick – it's not easier, but I've learned how to cope with it. I know it's coming, and I know how I'm going to react, for the most part, with most patients. So it definitely has gotten easier. I bet it took a good six months before it was something I was used to.

It sounds to me like your nervousness was so much more about the emotional side of it than the process.

Yes.

Does the process feel to you like, "I'm a massage therapist, and this is what I do?" Is it just like massaging any other patient?

For the most part, yeah. The process is what it is. I had some reservations about things because, as a massage therapist, we're trained that there are certain times when you don't massage someone – cancer being one of them. There are specific techniques and specific things you do or don't do for cancer patients. I had to get over that and get to the point of realizing, these patients are terminal. They're not going to get better, and I'm not going to make them worse. It's more about comfort, pain relief, just comforting them and being with them as opposed to long-term effects.

How is it different from other massage therapy that you've done?

For the most part, it's a much lighter touch. Me being me, I specialize, outside of hospice, in deep tissue and sports massage, and I work in chiropractors' offices, and this is very light touch for the most part – not always. I'm working in a different environment; I don't have people lying on a table or sitting in a massage chair to work on them. Sometimes they're in their hospital bed, or in a recliner, or in their wheelchair. So it's different in those aspects – I don't have the quiet room and the quiet music and the low lights and all that. There's always a lot of stuff going on around, people coming and going and watching TV. It is quite different, but at the same time, the techniques are basically the same. They just want to feel better.

What do you think the benefits are to the patients and their families? Do you think the family figures into it as well?

Oh, absolutely. A patient asked me just a couple weeks ago why we have it. That particular patient happens to have a lot of pain all the time. And I asked her, "Do you feel better after I've massaged you?" And she said, "Well, yeah!" I said, "Well, there you go; that's why I do it." Some people don't have pain, but maybe it just feels good to get a massage, and you deserve to feel good just as much as anybody else does.

It helps the families a lot because, for one, it might give them a break for a half an hour or an hour; they can go take a shower. Sometimes it's having somebody else there to talk to while their loved one is getting massaged. When it's something where it comes to pain or edema, things that I can help physically with, it gives the family peace of mind that there's something that might be helping relieve that pain or those other symptoms that their loved one might be having.

Do you think that there's something therapeutic, not even necessarily about the deep tissue, but just about touch?

Absolutely. Even on our paperwork, one of our options that we have to check is: What kind of massage did you do? One of the options is comfort touch. I've had sessions where, literally, the patient just wanted me to hold their hand. We didn't talk; they didn't want me to do any massage; they just wanted touch. Especially if they happen to be the last one in a family, and they don't get a lot of visitors, it's just nice to have somebody there and be willing to have that physical contact with them. There are studies forever about how, even infants who don't get that human touch, they don't thrive. It's a very important thing. I think just touch is a big thing, skin to skin contact.

What other kinds of feedback do you get?

Even outside of patients and their families, people are almost always shocked to find out that we offer massage. I've been doing it for over five years, and Michelle had already been there for a year or so before I started, and still in the last month, I'll run into people at nursing homes who are shocked: "You offer massage? We didn't know that!" And I'm like, "Well, you've been using us forever, you know." A doctor once, while I was filling out my paperwork, and he came in to see the patient I had been working on, and he was like, "Massage? You guys offer massage?" And they always say that is so great! People are always shocked to find out that we offer it and that it's a thing. "Really? You do that?" Yeah! I do that!

We talked about the emotions that affect you when a patient dies. Is the process emotional at all, or is it just work?

It can be – I would say in most cases, it is emotional. There are some patients that I might only see once, and that can be less emotional, depending on the situation in which I go into their environment. What stage they're at. But there are some people that I know for a couple years, and I see them all the time. We have a very personal relationship, doing what I do. They might be fine, and you wouldn't even know they're sick, but you know it's coming. And then when they start that decline towards the end of their life, it can get really hard.

It's not just work. I love doing it. It's a passion, and I think most people who work in hospice, regardless of what area they work in hospice, would say the same thing. A lot of people I've seen in my time at the agency I work at who have left our agency for one reason or another, almost always, they still work in hospice, just for a different agency.

Were you surprised to discover that passion?

Yes.

You didn't see it coming?

Not at all. When I started, it was a job. But you fall in love with it fast.

And you had been doing sports massage, which is –

Yeah, completely different. The other end of the spectrum. And I have a passion for that, too. I love that environment, too. But it's a privilege to get to develop a relationship with somebody at the end of their life. Everybody deserves to die with dignity and respect and comfort, and getting to be a part of that is something I never would have expected to … I wouldn't say enjoy, but welcome. I love it. Not that I ever wish there were more people in hospice, but if the numbers were more steady. … There was a time, a couple years ago, when I was seeing 25 patients every week, and I had another job. If I had 25 patients that I was seeing every week at this point, I probably wouldn't have another job. If it were steady enough income-wise, I wouldn't do anything else. It's so rewarding.

Massage, in general, is rewarding, and it's got its times when you feel like you can't do it anymore, but by the time you go to your next patient, it's like, "OK. I'm back to normal now." Because patients have bad days, just like anybody else, and a lot of times in different ways from how someone who's not dying has a bad day. You know, they might have so much pain that it hurts for me to even breathe on them, let alone touch them. As a massage therapist, your goal and what you strive for is to make people feel better. When you can't do that, it's an awful feeling. And then you get multiple of those in one day, and it's just like, "Nope, I think the rest of the day is just going to be in my bed with the lights off. No more today."

I know that as a massage therapist in other areas, you're going to have some patients who want to talk while they're getting a massage and others who just want to lie there quietly and enjoy. I would assume that's probably the same in hospice?

Absolutely. I would say, for the most part, my hospice patients do talk while they're getting their massage. A higher percentage than in other massage. The ones who don't talk, can't.

Is it typically more just talking about stuff? Or do you get heavy sometimes?

It can get heavy. It can. Not all the time. Usually, it's about their life, and what they used to do, or about their family, especially if I don't get to meet their family. They will talk forever when you ask them the right question. The last thing I want to do is bring them down and have them talking about their situation, so I'll ask, you know, "What's your favorite food?" And, "Oh, well, let's get into that!" Or they'll state something that might bring up – "Oh, so did you travel a lot?" Or, "What did you do for work before you retired?"

But it can. It can get heavy because they can have their bad days, not only with pain, but (also) pondering what's coming, and worrying about what they're leaving behind and who they're leaving behind. Fears. It can get heavy, and certain people you know it's going to be heavy every time you see them. Because that's who they are. But it's not all the time, thank goodness.

But probably, providing that listening ear is a big part of the service for them, too. It's part of the comfort.

Absolutely.

What would you say to other massage therapists who might be considering this or might be waffling over it? Would you tell anybody to get involved with it, or does it require more of a specific temperament?

Yeah, I would say it's probably not for everybody. But you also don't know if it's for you until you've done it. Just as easily as I fell in love with it, I could have decided, "I can't do this." There are people who have tried working in hospice, and they know pretty early on that it's not for them. It takes a lot of compassion – we talk about that in our training and hospice meetings a lot – compassion, not just for our patients, but for their families and their caregivers, and for the facility staff if they live in a nursing home, and for each other, because we need each other as much as our patients need us. We're going through a lot of emotional stuff. So I don't think it's for everybody, but if somebody is interested in it, it doesn't hurt to give it a try. I didn't know that I could, and now I'd rather not do anything else.

We thought the interview was all done, but then I was talking about some other types of hospice services I'm interested in writing about, and Tami had a great anecdote to share about working together with the music therapist.

So at my agency, we also have music therapy, and on occasion, we are with the same patient at the same time, which works out really well. In one case, there was a patient who I had been seeing for a while, whose massages lasted 5-7 minutes typically – on a good day.

And that was just because it didn't feel good to her to go longer?

Yeah, I would be working on her, and she'd say, "OK, that's enough, I want you to stop." But the day the music therapist and I got there at the same time, she was getting her massage and her music, and she got a full half-an-hour massage and didn't complain once. And actually, I think at the end, she said, "Oh, are we done already?" 


Read More from This is Terminal:

Love and Letting Go at Zen Hospice Project

A Hospice Social Worker on Grief and Empathy