Ep 321 – Palliative Touch with Cindy Spence

0:00:00.2 Kristin Coverly: Thanks to the support of generous sponsors and all the folks who paid it forward, Healwell is excited to announce its offering its online symposium Within Reach: The Quest for Information and Research for 50% off. That's $160 for two incredible days of education and engagement that will transform the way you relate to not only research, but all information. Join us February 25th and 26th for this highly interactive virtual symposium. Learn more at healwell.org.

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0:01:32.3 KC: Welcome to The ABMP podcast. I'm Kristin Coverly, my co-host, Darren Buford is enjoying some well-deserved time off, so I'm solo-podding with you today, and I'm very happy to have the opportunity to have a conversation with Cindy Spence. Cindy has been a massage therapist, specializing in oncology and hospice care since 1999. Co-creator of Final Touch Training, Cindy is a member of the Society for Oncology Massage, the Hospice and Palliative Nurses Association, and the National Hospice and Palliative Care Organization. She is the author Palliative Touch: Massage for People at the End of Life, and, Comfort Massage Basics: A Training Program for Nurses and CNAs in the Hospice Care Setting. Learn more at finaltouchtraining.com and singingdragon.com. Welcome to The ABMP podcast, Cindy.

0:02:24.2 Cindy Spence: Thank you so much, Kristin, it's a pleasure to be here with you today.

0:02:28.1 KC: And I really did mean what I said at the beginning, I am really looking forward to our conversation today. Your book, Palliative Touch is beautifully written and really talks about a topic that is so important and yet can be so fragile and there's so much wrapped into it, so I'm really looking to having this conversation today with you, not only just for me personally, but I really am excited for our listeners to learn more about palliative care and palliative touch in that field. So let's get started, you have a powerful story about why you became a massage therapist. Please share that with us.

0:03:03.5 CS: So in 1998, my father-in-law was dying of cancer, and the only thought that seemed to give him any pleasure at all was the idea of a massage therapist coming to his hospital room to provide a massage, and I wanting to be helpful in even a small way offered to call around and find a therapist for him, and I was quite dismayed, phone call after phone call to be told, no, that he was too sick, the therapist didn't specialize in that type of massage, that massage was contraindicated for a person with cancer, and I did not know very much about massage therapy at the time, but this just didn't make sense to me, and so I decided to go to massage school, I thought that I'm going to learn how to do this even if it's only for my friends and family, so I think this would have been a very lonely time for me if I had not run across Gayle McDonald's first edition of Medicine Hands, and that book became my Bible and my defense with people who told me that I couldn't do what I was dreaming of doing, I had some clients early on who trusted me before I really knew what I was doing, and they, of course, became my best teachers, and eventually the field of oncology massage was born, and suddenly there were trainings and there were books, and so there has been, over the years, I think, more and more support for this kind of approach, but the work has always felt very personal to me because it started in such a personal way.

0:04:46.7 CS: Absolutely.

0:04:47.3 KC: And I'm so sorry that you and your father-in-law had that experience, I'm hoping and please confirm or deny, but from where the field of oncology massage is now, that someone would not have that same experience looking for a practitioner. What do you think?

0:05:01.8 CS: I think that's correct. I think the Society for Oncology Massage has done a fabulous job, and I think that there are enough mainstream institutions, Mayo Clinic, Sloan Kettering, and MD Anderson who actually now have massage therapists on staff, so it's been a beautiful evolution to watch.

0:05:22.1 KC: Yeah, and thank you for your part in it. So let's talk about sort the big picture and then we'll get a little bit more fine-tuned. What does the term palliative care mean? And how does massage therapy fit into that world?

0:05:34.5 CS: Well, it's a great question and I think there's a lot of confusion about that term palliative, and I want to clarify that I talk a lot about death and dying because hospice is the world where I live, but palliative care is not hospice. Palliative care is comfort care that can be provided at any point in an illness and ideally at the time of diagnosis, it can be provided alongside treatment to address the side effects of treatment and support the difficult decisions that patients and their families have to make along the way, it's a team approach modeled after hospice, so there's a doctor, there's a nurse, there are aids, there's social workers, there's a chaplain, sometimes there are complementary therapists, but really it's like pre-hospice, palliative care can occur before hospice is needed. Massage fits beautifully into this paradigm. Patients report reduced pain, reduced anxiety, and an increased sense of peacefulness, and so massage can support along that arch of palliative care whether the patient goes on to recover and become well again or whether that person declines and eventually dies.

0:06:54.3 KC: So Cindy, you mentioned massage therapy fitting into that world of palliative care, let's talk a little bit about what do we mean when we use the term massage therapy, in this instance, let's talk about the hands-on work, what type of techniques are used and what kind of pressure, pace, and frequency do practitioners typically use with palliative care clients?

0:07:15.2 CS: So almost any technique in a massage therapist toolbox can be adapted for this work. In our classes, my teaching partner, Susan D and I talk about using a shorter, slower, softer approach. So shorter means the length of the session, which in the industry is typically a 60-minute massage, that's frequently a much longer session than someone in palliative care or hospice care would tolerate, and so we adapt the session to the patient's energy level and their stage of wellness or decline. It might be a 20-minute massage, it might, at the very end of life be a 15 or even a 10-minute massage. So shorter is one component of the adaptations we make. Slower means that everything we do is slower, the way that we enter the room, the speed of our strokes, the way that we move around the bed, the patients in palliative care typically have highly activated nervous systems, as do their families. And if we can slow down everything we do, it's calming to everyone in the room, including the therapist. Softer means a reduction in massage pressure, the field of oncology massage has developed a beautiful five-point scale to describe levels of massage pressure, and with permission, we've adapted that pressure scale to end-of-life massage and palliative care, we make very liberal use of level two, but we also use level one pressure and we use a selected amount of level three pressure, so it's not one-size-fits-all, but pressure is probably the most important adaptation we make.

0:09:06.9 CS: And then we use lots of pillows, we use rolled towels, we use wash cloths, we fill in space between the client's body and the surface below just to give that sense of nesting and support, and we signal to the nervous system that it's okay to let go and really relax, so not much use of a massage table with bolsters.

0:09:29.3 KC: Okay, Cindy, I'm gonna jump into talking a little bit more about what are the qualities of a practitioner who would do well with this work? I'm sure of, so many of us have the heart, we have the desire to help people in this way, but we may not be suited to the work. Tell us a little bit more about what does someone... What qualities does someone have that will really be able to do this work well?

0:09:53.1 CS: Well, my personal opinion is just about anybody can learn to do this work, I think there are certain qualities that make the work come more easily or mean that perhaps we have a shorter journey in our learning, but, oh my goodness, we're all learning. I'm still, I'm still developing the qualities that I need for this work, but I think you named two very important ones, I would say the three things that come to mind for me are an open mind, an open heart, and a strong desire. And by open mind I mean someone who's willing to think outside the box and question everything we learned in massage school. I think an open mind means letting go of agendas to fix another person, and I think it involves a willingness to not know and to be a beginner, every single time you arrive at the door. In terms of an open heart, I think that we have to have an appreciation and even a sense of celebration of the diversity of human experience, disease and dying are universal, but the way that every person on the planet approaches those experiences is gonna be very different. And so I think we have to have a lack of judgement about that or be willing to confront our own biases, and we just have to be willing to have an openness. I also think that a sense of humor is very helpful, a willingness to be surprised.

0:11:26.1 KC: And that leads me into something I've been thinking about too, when you say a sense of humor, because this work, I'm guessing, can very tough. Can be emotional, can feel heavy. So what type of self-care do you recommend for practitioners who are working in the palliative care field?

0:11:42.2 CS: Well, that's a really great question, and I just wanna be honest here and confess that self-care is a real struggle for me, and I think it is for a lot of therapists, I think it is for a lot of people in palliative and hospice care. I knew that this was a weakness for me, and so I reached out actually to someone to help me to co-write the chapter in the book on this topic, which is Chapter Two, and the co-writer that I had on board was Ronna Moore, from Australia. She's a lovely, lovely therapist, lovely human being. And so I go back and I read and I re-read chapter two to remind myself about mindfulness techniques and boundaries and all the things, but I think what I'd like to share two insights that have been most helpful to me, and the first one is to learn how to contain this work is only one part of our lives, and that can be really difficult because this work is so, so remarkable and so all-consuming, but it's still only one part of life, and it sits alongside family and friends and pets and travel and good food and good wine and silly movies, and really anything else that brings us joy, and so I think we have to constantly look for that balanced, that lightness of being in what can feel like the heaviness of this work, we need to look for fun and awe and wonder, and there's a lot of really great material out on these topics right now.

0:13:18.7 CS: So that's the first thing. The second is, I think that we have to learn to dwell in the space of not having to fix things, and I think that that's very challenging for a massage therapist, I think that our training really programs as to think that we have to have some kind of tool to fix whatever problem the client is presenting with, and the truth is that we can't... We can't always do that, maybe we can't usually do that, and I think that it brings great pain to a practitioner who tries, and I say that because I have been there and because I flip sometimes, and I have to remind myself that really our call is to be a calm, caring presence, and allow whatever is unfolding to unfold without needing to change it.

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0:15:31.8 KC: Let's get back to our conversation.

0:15:34.3 KC: I'm curious, does doing this work make you think about your own mortality and is that something you also have to sort of let bubble up and then also let go away, so it's not so front and center all the time, or how is that experience for you?

0:15:47.5 CS: Oh, I absolutely think about my own mortality, but I will say that I do that now with much less fear, what I see on a daily basis is very reassuring to me, that there is so much help now and so much support that really none of us needs to die in pain or fear. And I think where I see pain and fear happen is where there's resistance or there's denial, and people are clinging to a reality that is not the reality that is unfolding in the moment, and I've just had some great teachers, I've now provided more than 6000 massages, I've gotten to watch this process over and over, and I'm a slow learner, but after 6000 times I start to catch on, and I think what I am realizing is that there's something mysterious beyond, and I can't tell you what that is or what it looks like, but I know that at the moment people finally arrive at that threshold, even if they've gone through a very challenging time to get there, there is almost universally a sense of peace and relief, even.

0:17:02.0 KC: That's so beautiful, and let's switch gears a little bit because, when we're talking about palliative touch and palliative care, it's not just the client or the patient that's receiving the work, but there's a lot of other people that might be in the room too. So another important part of the work you do involves family members at the bedside who wanna touch their loved ones but can be frightened that they might hurt them, that's a lot, that's... That, I'm sure they have so much going on already, and then to have the desire to touch and be afraid, that's a real challenge and what a beautiful opportunity for you to intervene and help them. Tell us a little bit more about that process.

0:17:39.2 CS: Well, that's actually my favorite part of this work, perhaps, some of my most powerful experiences have involved family members at the bedside who are standing tentatively, kind of looking at what I'm doing, and I can tell that they're curious, but they're reluctant, and I've learned every time to at least issue the invitation, they may say, no, but at least to open the invitation for them to be involved, and the cream that we use, we warm up, we use an electric lunch kit to warm up our lotion, and so the first lovely experiences is to see the caregiver's face as they put their hand in that warm lotion, and then to have them stand on one side of the bed and myself on the other, one or more family members, and to watch them kind of mirror what I'm doing, and then to go off script and to see them once they build that confidence to move to another part of the body on their own, and then before I know it, they're asking for extra lotion samples, and I might go back the next day and open the door and they're already providing a massage, and then I know that I'm not needed, and what I'm creating for them is a lasting memory of a beautiful encounter that may have happened once their person can no longer speak, maybe there's not another kind of communication to have at that point.

0:19:08.9 CS: Family is defined by the person in the bed or in the wheelchair, the recliner, so family can look like all kinds of things, it's not necessarily a spouse or a child or a parent or a sibling but it can be all of those things, but it also can be a colleague, it can be a childhood friend, so to watch all of these people get into this space of tenderness with someone else, it's really quite extraordinary to get to be privy to that.

0:19:38.9 KC: Okay, Cindy, you mentioned you've given over 6000 palliative touch, palliative care sessions. So for me to ask you to share just one client story, I know it's gonna be really hard, but I would really love to hear and have you share with our listeners one of your really impactful client stories from your journey through this work.

0:19:58.2 CS: Well, it is really hard to choose one, but what I'd like to do, if it's okay, is to read a story from the book, the book contains stories in every chapter, and I know that this one is brief and I won't go off on a tangent, so what I'd like to do is just read this. This is a touching story from chapter four, called The Unresponsive Patient. I had been told the patient was totally unresponsive, yet the family had requested a massage for the man, so I entered his room, the patient was lying supine with his eyes closed, his hands were curled, he was not moving, he did not respond to the sound of my voice, a family member sat at the bedside, she did not speak English, so I pointed to my name tag which said massage therapist, pantomiming my intentions. She nodded her head to indicate consent on the patient's behalf. I wish I had a video of what happened next. After I warmed the lotion between my hands, I began to apply it to the patient's arm, moving slowly from his fingertips, up the forearm, around the curve of his thin shoulder, to the neck, the patient's eyebrows moved up and down, and he exhaled deeply, his curled fingers opened slightly, allowing me to place one of my hands inside his hand, I continued holding his hand while my other hand gently massaged his upper extremity, the patient's eyebrows kept moving at the same speed as my hand it seemed.

0:21:34.8 KC: The man's mouth fell gently open as I moved to his other arm, his breathing was very slow and relaxed by now, the family member had moved closer to the bed quietly observing. The patient occasionally sighed with a soft sound of release. The massage was like a dance, each stroke inviting a small response, which then helped me know what to do next. When his breathing stopped for a moment, I stopped too, and simply rested my hands on the patient's body, feeling deeply connected with the rise and fall of his chest. Occasionally, I caressed his forehead, though it felt as if this choreography went on for a while, the session lasted all of 15 minutes. At the end of the visit, I rested one hand on the man's heart and the other on the crown of his head, we breathed slowly together, the man, his visitor and me, we all had our eyes closed by this time, as I slowly stepped away from the bed, the visitor stood and bowed to me, I bowed to her, and to the patient, in deep gratitude and quiet joy and hardly any words at all.

0:22:52.8 KC: Cindy, that's incredible. And I know you mentioned earlier that you say you're lucky to do this work, but let me reflect back to you, that your clients, your patients, are so lucky to have you, as are all of the support members in that room as well. That is a beautiful story. And one of 6000, I'm sure.

0:23:10.2 CS: Thank you. I wanna remind everyone, there are lots of people out there doing this work, in quiet bedrooms all over the world, and really, that's been true since the beginning of time.

0:23:22.0 KC: Yeah, it's our instinct, isn't it? To touch...

0:23:24.0 CS: It is.

0:23:24.0 KC: When people need it. Cindy, I am 100% sure you are inspiring all of our listeners to learn a little bit more and think about whether the palliative touch field is for them. What advice do you have for a practitioner who is interested in learning more and maybe going into palliative touch?

0:23:43.7 CS: Well, I think we should all be preparing. I think that we all have clients in our caseloads who will eventually become sick and die, they all will. We will. And so I think we all need to be prepared to respond to that so that we don't have to turn people away as my father-in-law was. I think, we need to seek training. Palliative massage training is ideal, but oncology massage training is more widely available and it's excellent preparation. There are hospice and palliative care conferences that are open to massage therapists, and I think that's a way for us to learn and to network with our clinical colleagues, in this field, I think there's a lot of education that needs to go on and it needs to be a two-way street, I'm often shocked at how little palliative care physicians and nurses know about our work, and I think that our clinical counterparts are open to hearing about it, so we just, we need to be looking for ways to connect with that community, and I think we need to look for ways to become less fearful about dying.

0:24:53.3 CS: I think there are excellent books out on this topic, I think there are trainings on this topic, Healwell has a lovely class titled, I think, it's Leaning into the Mystery, and I think that we need to remember that there's really no substitute for being at the bedside, so I would encourage everyone to keep those clients in your caseload, who become sick, and who maybe are going on this journey. Don't shy away from that work. If a person like that allows you to keep touching them, they will become your best teacher.

0:25:31.0 KC: With deep gratitude, I wanna thank my guest, Cindy Spence. Learn more about Cindy's courses at finaltouchtraining.com, and her book, Palliative Touch: Massage for People at the End of Life at singingdragon.com. ABMP members, you receive 20% off all regularly priced books at Singing Dragon Publishing. So learn more at abmp.com/discounts. Cindy, thank you again for this beautiful conversation, your passion, your heart, your love for the work comes through in the book. And twice as much in the way that you talk about the work that you do, so thank you so, so much.

0:26:13.1 CS: Thank you, it's been such a pleasure.

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