Ericka Clinton: Good day, everyone. Welcome to another episode of Collaborative Connections, a space for sharing and learning sponsored by the Society for For oncology massage, my name is Erica Clinton, and I will be your host for this episode. And on today’s podcast, we are here with a wonderful Cindy Spence. Cindy is a massage therapist who specializes in oncology and hospice care.

Ericka Clinton: She is the co creator of Final Touch Training. is a member of the society for oncology massage, the hospice and palliative nurses association and the national hospice and palliative care organization.

Ericka Clinton: She is also an author. Because of her amazing spirit and commitment to her work, Cindy was also honored in 2003 by S4LM with the Irene [00:01:00] Smith Palliative Care Award. Thank you, Cindy, so much for taking the time to join us today. I would Really love our listeners to get a better understanding of the work that you do and how beneficial massage can be at end of life.

Ericka Clinton: So I’m going to start you off with a question that I think you probably have been asked a number of times but why do you love and appreciate hospice work?

Cindy Spence: Oh, first, Erica, thank you for having me. It’s really delightful to be here with you today. So I’ve left hospice for a long time since my 20s when I volunteered to be a companion for hospice patients in rural North Carolina and like any long relationship, I’m very aware that my beloved is not perfect.

Cindy Spence: I’ve seen hospice service failures. I know there are gaps in the system and [00:02:00] there are limitations in all of us as humans caring for other humans. But what I love is that hospice is available to people who would not be able to pay for it. The buy in from Medicare, Medicaid, and private insurance companies assures that most hospice care is paid for.

Cindy Spence: And I’ve seen hospices extend their services to people without any insurance at all, including people who are unhoused. I love that we address the whole person, body, mind, and spirit. I love belonging to an interdisciplinary team where each member brings expertise that the rest of us don’t have. I’ve been honored to work with phenomenal doctors, nurses, nurse aides, chaplains, and social workers, but I think what I love most is that hospice brings a sense of [00:03:00] community to the experience of dying.

Cindy Spence: Well, don’t have to be alone or frightened of a process that they don’t understand they surrounded by a team of individuals who support them and help them navigate the end of their lives according to their preferences and. There are these profoundly intimate connections that occur when we focus not on our differences, but on this shared fundamental aspect of being human, that we will all die someday.

Ericka Clinton: Wow. That’s amazing. I guess I didn’t realize that working in hospice you would be part of that integrated team, but I imagine it is a vital part of providing the level of support that you just remarked about that people get in [00:04:00] hospice is to have all of those people involved.

Cindy Spence: Absolutely.

Ericka Clinton: So, When a massage therapist is working in hospice or palliative care, what do they need to be aware of in terms of skills, but also I guess some of the more, psychosocial aspects of working with this kind of patient population.

Cindy Spence: My teaching partner, Susan Gee, and I can teach the skill set that therapists need in three days. The skill set’s pretty easy. It’s the mindset that’s harder. I think, especially for massage therapists, we have to shift our attentions from one of fixing problems to one of providing safe haven for rest on a difficult journey.

Cindy Spence: And we have to remember that hospice and palliative care comfort oriented, not results [00:05:00] oriented. What the work asks of us is that we let go of our agendas and our techniques. You’re invited instead to settle into a space of deep caring and mindful connection, attention, and compassionate curiosity.

Cindy Spence: And this, frankly, is a space of not knowing and being okay with not knowing. In a way, it’s very freeing, and it can be a great template for all of our interactions, but I tell you, it’s a lot easier to develop this mindset at work than it is to develop it at home.

Ericka Clinton: I can totally, totally see that. So that, that’s a really interesting, I think, concept for me and hopefully also for our listeners, that the skills are very, The technique, I guess, is very [00:06:00] straightforward, but it is that emotional space that we have to enter to understand our role in hospice or palliative care and how that’s different.

Ericka Clinton: than most of what we were trained to do in school. Yeah. So let’s give our listeners a little bit of context. Can you explain what the difference is between hospice and palliative care? I know oftentimes people use those terms synonymously but I do, I do know there are some significant differences.

Cindy Spence: Well, you’re right, and I do think there is still a lot of confusion around this. Hospice care is care that’s introduced at the end of life when treatment has ended, either because treatment becomes futile or because the burdens of treatment become so great that the dying [00:07:00] person decides they’re ready to prioritize comfort.

Cindy Spence: Palliative care is based on the hospice model, so it’s the same team approach to managing symptoms, but it can exist alongside treatment, ideally very early in a life limiting disease process. So, the palliative care team works alongside oncologists, radiologists, surgeons, and other specialties to address symptoms of disease and side effects of treatment.

Cindy Spence: And they can also help patients and families have conversations about the care plan and when it might be time to consider the alternative of stopping treatment.

Ericka Clinton: Thank you for that. That, that adds a, definitely a low level of clarity. I think but obviously massage would be appropriate in, in either space.

Ericka Clinton: how do you adapt massage for a [00:08:00] hospice patient? Are there goals still?

Cindy Spence: I think that goal again, the, the goal that we keep solid is the caring presence and adapting. The interaction to the patient’s needs in any given moment, any given day, those needs are going to change over the trajectory of a disease process. One of the main things we do is that we work on people wherever they’re most comfortable.

Cindy Spence: So, in a, a home setting, that might be a favorite reclining chair. It might be a power wheelchair, the We rarely use a massage table in hospice care. People often fall asleep during their massage and we can leave them right where they are. We use a lot of pillows and other soft materials to support the natural curves of the body and this is a way to signal to the nervous system [00:09:00] there’s enough support for a person to, to let go and to truly surrender and relax into the experience.

Cindy Spence: We often see pain scores dramatically reduced just with positioning before we even start the massage. We reach as much accessible intact skin as we can. We may work up under a sleeve, up under a gown. We may work up under a pants leg. We remove socks. But we also learn to provide a lot of our work over clothing.

Cindy Spence: If the removal of clothing is burdensome, if the patient is cold and needs to be covered. We accept that massage in a hospice setting is rarely a symmetrical experience. You know how we’re taught in massage school that first you do this to this side of the body, and then you do the exact same thing to the other side of the body.

Cindy Spence: But in hospice massage, there may be parts of the body that we can’t touch. There may be parts of the body that we can’t reach. [00:10:00] And so we get creative about our cadence and our sequencing. With things like holds or repetition, a certain number of repetitions of strokes that can give a sense of beginning, middle, and end because that’s very soothing to the nervous system.

Cindy Spence: I think I’ll just throw out that Susan and I use the terms shorter, slower, softer to describe the adjustments that we make shorter referring to a shorter duration of massage. Session all of our movements, both on and off the body are slow. That’s very calming to a nervous system. That’s been through some trauma and then softer refers to the lighter pressure that.

Cindy Spence: Describe and we use the same 5 point scale that, mcDonald and Tracy Walton have developed for us.

Ericka Clinton: So someone trained in oncology massage then is almost, [00:11:00] I guess, already has a lot of the technical skills to work in hospice care. It really is about just, working on some of the non technical aspects that could help them prepare. And as we know, sometime oncology leads to hospice care. So I think it makes sense for us, of us who do both.

Cindy Spence: Yes, many of us got our start in oncology care and then realized that it was really that, that end piece that most spoke to us when a patient made the transition to non curative care. But we love getting massage therapists in our classes who have had training in oncology massage because They really have all of the adjustments that need to be made and, and that provides a great template for working with other diseases.

Cindy Spence: You know, you have other diseases, maybe that don’t create lymphedema, but that create edema, which [00:12:00] is addressed the exact same way. There are conditions across all diseases that share similar features with an oncology diagnosis.

Cindy Spence: Risk for DVT, risk for bleeding swelling, brittle bones. So the adjustments that massage therapists learn to make in oncology massage are absolutely translatable to this work. Okay.

Ericka Clinton: I often say to my students, once you’ve been trained in oncology massage, the assumption is that you can do anything. So you are like now the MacGyver of massage, right?

Cindy Spence: Well, and I think there’s, there’s some things that I just do differently, even when I provide a massage for a healthy person in my family, let’s say that slower speed, I’ve just learned both to enjoy that as a recipient of massage and just how lovely it is for, for anyone really.

Ericka Clinton: Yeah. I think the skill set has a, [00:13:00] Ripple effect and all of a sudden it impacts all of your work, not just with this special and unique population.

Cindy Spence: I would say maybe one difference is that in oncology massage, I know Gail McDonald sometimes uses the term inching forward. Someone in treatment who is making progress toward wellness, perhaps, is someone for whom our sessions can gradually over time be adapted as treatment stops and people move more fully into their recovery that we can inch forward with some of our work.

Cindy Spence: And, of course, in this work, at the end of life. You’re doing the opposite. People are, people are in some kind of decline, whether that’s a sudden decline or a gradual decline. So you’re never inching forward, you’re, you’re, inching backwards

Ericka Clinton: Yes, or just holding space [00:14:00] kind of right being present at all times. So let’s talk about the impact to you as the massage therapist in this work. How do you maintain emotionally when you work in such a challenging environment?

Cindy Spence: Oh, boy, that’s the hardest question, and I’ll let you know when I have a better answer for you. This is, you know, this is still a challenge for me. I, I think what we have to acknowledge in this work is that, This work is a front row seat to a lot of suffering. And in the moment, our job is to stay in that seat and to be a calm, caring presence to the suffering person and to their suffering loved ones.

Cindy Spence: But you cannot do this job if you don’t find some kind of ballast, whatever that looks like to you. For you, I can only say that for me, it [00:15:00] requires some silliness and some lightness of being, I have a very silly dog. I’m taking French classes and my French is terrible. There’s a lot of laughing there.

Cindy Spence: I connect with good friends. I, Laugh with them and I laugh with patients too, you know, that part of the work surprised me a little bit. I had an experience just this morning providing a massage for a young male patient. And I was being very careful with his draping and very protective of his dignity.

Cindy Spence: And he finally looked at me and he said, You know, I’m going to tell you the story of the first bath that I got from the home health aide. She came to his home and she said, now Mr. So and so, I’m going to, first I’m going to wash your feet, and then I’m going to wash your legs, and then I’m going to wash your private parts.

Cindy Spence: And he said, honey, those parts haven’t been private for a long time. [00:16:00] So I think our patients often cope with, you know, this devastating situation by Finding some, some absurdity in it, you know, that can, can make for moments of, of tender laughter together. I didn’t expect that. And I’ll say one other thing about that, Erica.

Cindy Spence: I, I find that I can’t take on a lot of other suffering. I find that, you know, sometimes I feel guilty that I’m not more involved in global news or global issues or global causes. But at the end of the workday, I just don’t have the capacity for a lot of that, and I feel I can only hold the suffering that I’m able to carry at any given time, and so I try to forgive myself for that.

Cindy Spence: I don’t know how other people do it. I wish we talked about it more.

Ericka Clinton: yes. I always. [00:17:00] I just believe that in the work in doing this kind of work, we need more supervision and support networks for each other. you spend so much time bearing witness, which is such a fundamental need. But to be able to put it down with other people who understand, I think is something that we’re missing.

Ericka Clinton: And maybe that’s a, that’s a stick. That you and I need to take up,

Cindy Spence: Well, I’m not, I’m not, yeah, I’m not sure I would be your person to be any kind of expert on that. You know, the one chapter in the book that I, I had to have a co writer for this chapter two on self care. I knew, I knew that that chapter did not belong in the back of the book. I knew it belonged in the front of the book.

Cindy Spence: And I knew that I needed help to write about that chapter. And [00:18:00] so I Calcates introduced me to a lovely Australian. Therapist Rona Moore, and I’ve never met Rona in person, but she and I wrote chapter two together, and could not have written that chapter alone. I learned a lot from it.

Ericka Clinton: Maybe that’s also the self care lesson. Is that reaching out to get the support is important.

Cindy Spence: Yes.

Ericka Clinton: but that’s amazing. what is the title of the book that you were mentioning?

Cindy Spence: The title of the book is Palliative Touch Massage for People at the End of Life.

Ericka Clinton: Wonderful, wonderful. And this is not just one book you’ve written,

Cindy Spence: Oh, a few books. Oh, no, only one, only one. I, I wrote chapter 14 in Carolyn Tague and Gail McDonald’s hospital book, the recent edition,

Ericka Clinton: okay. Okay.

Cindy Spence: and [00:19:00] a few articles, but no, I, I think one book is enough for me. I’m still recovering.

Ericka Clinton: It’s a lot. It’s a big endeavor. It’s a, it’s a lot of creative work that goes into something like that. And obviously sharing your love of this work, as well as understanding what it means to educate. So important. And so I’m sure it took a lot of, a lot of brain cells to put all that

Cindy Spence: to write, so it actually was a lot of fun, but, I remember Gail McDonald once looking at my calendar and saying, you’ll never write a book with a calendar that looks like that. And I remember thinking, well, then I guess I’ll never write a book because I couldn’t imagine how I would clear my calendar and then COVID happened. So, that’s how the book got written. I wasn’t doing anything else. I was working, but home and [00:20:00] then writing.

Ericka Clinton: Wow. Another very interesting COVID opportunity.

Cindy Spence: Yes,

Ericka Clinton: Time to do something you’ve been meaning to do for a long time.

Cindy Spence: right.

Ericka Clinton: Cindy, thank you so much. It’s been really wonderful to hear you talk about the work that you do. Clearly, you love what you do and it is so special and so necessary. As we walk through our days on this earth and I am very, very grateful that you gave us this time and you’re very busy schedule to share with our S4M community about your work.

So thank you. Thank you. Thank you.

Cindy Spence: Thank you. It’s been my pleasure.

Ericka Clinton: All right, collaborators have a great day and I hope you enjoyed today’s podcast.