What to do When a Loved One is Dying, Stacey Canfield Ep. 28

Stacey Canfield created Soul Sitters, an organization dedicated to supporting the spiritual journey of patients and families during the end of life process. Hear the steps to help loved ones through the dying process.

Transcript

Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print.

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Soul Sitters website

Dr. Bob: How do you teach love to medical professionals? How do you help them learn how to express love and compassion to patients and families who are struggling with the challenges at the end of life? This is the work my dear friend, Stacey Canfield is committed to. Stacey created Soul Sitters, an organization that’s dedicated to supporting the spiritual journey of patients and families during the end of life process, as well as providing tools and training to medical professionals, especially those who are working in palliative care and hospice, and anyone else who is supporting those who are dying. Stacey’s work is so inspired and so needed, and it’s having a great impact on those she touches and beyond.

Be sure to listen for some of Stacey’s practical tips on how to support loved ones who are nearing the end of their life. Let’s get started. Stacey, thank you so much for taking time today in joining me for this podcast. I’ve been excited. We scheduled it at a while back, and I’ve been looking forward to today because I know that you have some really helpful, valuable information to share, and people are going to really benefit from hearing this, so thank you.

Stacey Canfield: Thank you for inviting me.

Dr. Bob: Absolutely.Stacey Canfield: Happy to be here.

Dr. Bob: Yeah. We’ve known each other for what, about seven years?

Stacey Canfield: Eight years.

Dr. Bob: Eight years now?

Stacey Canfield: Yeah.

Dr. Bob: Right.

Stacey Canfield: Yeah.

Dr. Bob: Then, we met before I even moved down to San Diego before I even started in this work. We’ve been birds of a feather, looking for how we can support people who are at the final stages of life, coming at it from different angles, and now both here we are with our feet firmly planted and our flags firmly planted, and this is what we do. This is my calling and my commitment, and this is your calling and your commitment as well, isn’t it?

Stacey Canfield: Absolutely. Yes. It feels so good to finally create tools. I mean, I’ve had the tools for years since 2010, but it feels really good to organize them in a fashion where I can actually go in and teach other palliative care professionals the tools, the right tools to use at the right time for the families who are saying goodbye to their loved ones, so yeah, I’m really excited to launch the Soul Sitter Certification in September of this year. Very excited.

Dr. Bob: Awesome. Yeah. It’s been a long time in the making, and so I’m excited. I’m excited for you.Stacey Canfield: Thank you.

Dr. Bob: What is a Soul Sitter? What does that term mean?

Stacey Canfield: Sure. Soul Sitter has basically two definitions, and the first definition is someone who is present for the final breath of their dying loved one, so they’re actively there for the last moment that the soul leaves the body. The second definition is someone who is part of the journey of someone’s terminal illness. If you’re just going in to visit your loved one who is dying, and you’re not there for the final breath, you’re still a Soul Sitter because you show up and you presence being with them in the moment, in that precious time, that precious visit, knowing that it may be the last time that you see them.

Dr. Bob: The term ‘Soul Sitter,’ how did that come to you?Stacey Canfield: That’s a long story, but it actually came to me back in 2010 where I really got the calling to provide this type of work and get it out into the world, specifically how to help the families who are saying goodbye to their dying loved one. When I was kind of workshopping this whole process, we were trying to come up with the term of what we could call someone who’s there, who’s present, and a lot of different names were floated out there, but I really had to just get quiet with myself in a moment of meditation and think, “What do you really do in that last moment?”, and simply, it’s just sit there, show up, be present, and just sit with the dying, and so the term ‘Soul Sitter’ originated from that place.

Dr. Bob: Okay, so the sitting and obviously being connected and coming at it from a soul space?

Stacey Canfield: Exactly. Honoring and having the dignity for the place that they’re at in that moment, in the space of letting go. There’s just an honoring and a presencing in that moment, and all we can do as a loved one is really just hold space for them in that moment through sitting their soul.

Dr. Bob: Got It. It’s interesting. I’m with a lot of people now who are dying. I’m with people who are days, weeks or months away from dying, and I’m with people who are actually dying in my presence, and I know that there are so many family members who struggle with knowing what to do, how to be, what to say. They’re dealing with their own fears and their own internal struggles, and then they’re trying to be as comforting and supportive as possible, so having tools that people can take into these encounters and in these moments could be so incredibly valuable.

Stacey Canfield: Yeah, and that’s where I feel like there’s this little gap out there in the medical field where we do focus on the patient, and it should be patient-focused, right? What I’m excited about going into with hospices and hospitals is giving them tools to really support the family members. On so many levels, this is helpful. Many times, when you’re in the hospital, you just see people just waiting in the hallways, so emotionally distraught and they don’t know what to do. A busy nurse, a busy doctor, a busy social worker may not have the time to fully devote to supporting those family members, so what are tools that we can give them that could quickly connect with them and provide a more calming situation?

What I’m excited about is that I can powerfully walk in and help these medical professionals empower them the opportunity to assign the role of Soul Sitter, and tell them the importance of what that means to be with their loved one, show them hands-on tools, give them … I have six tools that I can … They’re like portable tools that I can easily assign to doctors that they can use in the moment, so they get to assign the right tool at the right time for the situation of that family member. It’s just really a need to help calm the whole energy of the situation. Imagine a world where there is more of a calm, there is more of an engagement, there is more of a presence for those loved ones in that moment, and eventually, the ripple effect is going to really help them in their own dying situation when their time comes, so it’s a huge ripple.

Like I said, I’m so blessed and happy to have this calling that I can go in and help teach these professionals really quick and easy methods to connect really deeply with these family members.

Dr. Bob: Yeah. That’s so wonderful. I mean, I have such a visual of what that could look like because I also have the visual of families who are totally freaked out, who are anxious in every moment because they don’t want to say the wrong thing. They don’t-

Stacey Canfield: Right.

Dr. Bob: They’re nervous. They’re in unfamiliar territory, and they want to be helpful and supportive, but they’re also afraid that they’re going to say something that will be misunderstood or add to the discomfort, and so being able to give them these resources will reduce that, the fear and that sense of discomfort. Go ahead.

Stacey Canfield: It’s interesting. This all boils down to love. How do you teach love in a medical profession, right? It’s a little soft, right? My big goal is to bring this compassion, bring this extra layer of compassion to the palliative care professionals who are, first of all, angels who are called to this work.

Bob, you know how much I feel about you. You are an angel on this Earth, and you wouldn’t be doing this unless you had immense compassion, but giving them hands-on tools that they can use at a moment’s notice and they know exactly how to fit it into the situation. Just a full abundance of love permeates on both sides from the healthcare professional to the person receiving it, to the patient.

Dr. Bob: Yeah. I love-

Stacey Canfield: It just resets the energy.

Dr. Bob: Yep. I love that it really does all boil down to love, to sharing, to expressing love, to receiving love, but love without a certain amount of direction isn’t going to be nearly as effective, right?

Stacey Canfield: Right. Right.

Dr. Bob: That’s where that you’re coming from a place of love, you’re coming from this place of wanting to connect and relieve the fear and distress, but as we know, you need tools. You need to have clear directives to be really effective at it. There are times when you just sort of figure it out in the moment, but most people who aren’t exposed to these scenarios are, it’s not normal for them to be in a hospital with all of the antiseptic stuff and the buzzing and the alarms. It’s not familiar for them to be next to somebody who’s in pain or who’s having trouble breathing, so it’s hard to just figure out how to be present.

Stacey Canfield: Right. It is. It is, and-

Dr. Bob: To me, as often as I’ve been doing this now, there are times when I’m just at a loss of what to say and how to be really the most clear and supportive, and so sometimes, I need to go back and remember some of these tools and steps, and sometimes I just sit, and I just hold a hand and meet somebody’s gaze, and don’t try to figure out what’s the right thing to say in the moment.

Stacey Canfield: That is exactly part of one of my most popular tools that I use, which is the STEPS process. It’s an acronym, and I’ll just share it with you quickly because it’s such a … It’s almost embarrassingly easy how this tool works, but I’m so happy to share it with anybody because you can use it in any situation. The STEPS method can be used if someone just lost their job, or newly separated, or just profoundly heartbroken. The STEPS is really effective for that, so if you have a moment, I can share it with you.

Dr. Bob: Of course.

Stacey Canfield: Great. Yeah. The STEPS is an acronym, S-T-E-P-S, and the first step is smile. If you are about to go visit a loved one who’s in the hospital, you haven’t seen them in a while. The last time you saw them, they were standing at the grill. Imagine this is Uncle Bob.

He was standing at the grill, flipping burgers with a funny chef hat and apron, and just the life of the party at the family picnic. Now, fast-forward eight months later, and he’s fighting pancreatic cancer, and you know that you’re about to walk into this room, and he’s not going to look like his jovial old self. He probably will have lost about 50 pounds and lying in a hospital bed, so wow. How do you prepare for that? If you can, just maybe stand outside the door and presence yourself a little bit. Take a deep breath and reflect back to that most beautiful memory that you had of that person.

Get present in that moment and just reflect and recall the happy times that you had spent together, and let that bring a smile to your face, right? You walk in with that soft smile, and that beautiful memory, and that love in your eyes, and you walk forward, and you apply the second step, which is T for touch, and you find a safe place to touch them and acknowledge them. Maybe it could be the foot at the end of the bed, or maybe as you get a little closer, you’re touching the back of the hand or the forearm, or if they’re in pain, you might want to ask permission if it’s okay to touch as well, but then, the third step is E for eye contact. Like you said before, Bob so beautifully, you meet their gaze softly, and you acknowledge their humanity, because they don’t feel like the last time they saw you most likely, and by acknowledging their humanity and collecting their gaze, you say, “I see you for who you are right now.” Then, P is so gracefully as you said earlier, you sometimes just sit there, and P stands for patience and presence.

Sometimes, you just sit there and let tears roll down your cheek, and that’s okay. Don’t feel like you have to force anything. This is a precious moment in time for both of you in this moment. Then, S stands for serving. I can’t tell you an abundance of love comes through with one question, and this one question is, “How can I serve you?” You might be shocked at some of the answers because, in that moment, the only thing they want to be done this time is somehow be served, because they don’t want the car, they don’t want the fancy things anymore.

They want to know that maybe, “Hey, can you go walk my dog? Can you take them to dog beach? Can you make sure that my tomato plants are being watered? Can you help me write a letter to somebody?” When I asked this question to my godmother Mary, she shocked me. She asked me to burn 25 years of journals that she had kept, and she didn’t want anybody to read them.

For some reason, she trusted me in that moment, and I just looked at her. I can’t even imagine the look on my face that I reflected at her, but I just was so excited for her. I said, “Yes, absolutely. I promise you; I will burn them in a beautiful ceremony in your honor after you’re gone.” The serve question is the one question you can lean on in the end, and just be open and prepared for what that answer is because you may be surprised.

Dr. Bob: Yeah. Yeah, and I think that’s the key is being open and reserving judgment and just coming from that place of love and service.Stacey Canfield: Right.

Dr. Bob: That’s awesome, and so that’s really one of the things I wanted out of this interview with you, was to be able to give something practical to people who are in this position. Can you summarize them just real quickly again? [crosstalk 00:16:46], and I encourage people to go back and listen so that you can get [crosstalk 00:16:50]-

Stacey Canfield: Sure. I’ll send you a PDF too if that’s helpful, so you have that to download.

Dr. Bob: Okay. Yeah.

Stacey Canfield: I’ll send you a little PDF, but the STEPS stands for smile, touch, eye contact, patience, and service.

Dr. Bob: Beautiful. Awesome. This is one of the tools, right? This is one of the tools, so you’re teaching the professionals these tools so that they can go, and then spread them.

Stacey Canfield: Empower the family members of these patients with skills for dealing with the situation.

Dr. Bob: Right. Can you just, without giving up too much of your program, what are some of the other tools? I’m curious. What are the other directives?

Stacey Canfield: Sure. Yeah. I have the Positive Grief Method, which is a really beautiful, self-reflection, guided visualization process, which helps you find a beautiful symbol that represents your loved one. Not only is it just about the symbol, the physical symbol itself, but it’s part of their legacy of their character, and helping find meaning underneath that symbol that represents your loved one. That is probably one of my most favorite, my most requested teachings when I go speak to hospitals and hospices.

They want to dig into the Positive Grief Method because it’s fun. It’s really a fun discovery, and I’ve led so many classes on the Positive Grief Method, and that I’ve seen people that have been in that class several times. Every time they do it, they get a different symbol, so it’s fun for them, and it’s really fun to do with anybody that you love in your life, so I love walking people through the Positive Grief Method. Another one of the tools that I have, it’s a really comprehensive tool. It’s very robust.

It’s actually a 60-page document that I make available to people. It’s called the ‘Passage Plan.’ The Passage Plan is really for people who are newly diagnosed, and they probably have a prognosis of several months, but it really helps families go through and cover the bases of what they need emotionally, physically, and spiritually, how to equip those families to take care of their loved ones, asking questions that you wouldn’t even think were important. What’s nice about the Passage Plan too is that it’s very self-reflective as well, and there’s a portion in there where there’s templates where they can even use writing, so if they want to write letters to loved ones, they want to write down some pieces of their own history. There’s a part where they even write like if they were going to write their own eulogy. There’s that in there as well.

It’s a really beautiful document that you can pick and choose which pieces are most important to you, but anybody who fills out their own Passage Plan really just learns how to even live their own life more robustly. I filled out my own Passage Plan, and the way that I was able to enroll my mother because I was like, “Gosh, I want my mom to fill this out. How am I going to get my mom to fill this out?”, I completed my Passage Plan, and I went over to her home, and I said, “Hey mom, I just want you to know that if anything ever happened to me, everything’s written down here for my wishes. If I get sick, if I get a terminal disease, everything that I need that you can take care of me that’s important to me is in this document”, and I just slid it across the table and handed it to her. Of course, she was very, very curious and wanted to read it, and got her to fill out her own Passage Plan because she realized the power of, “Oh wow, everything you have is right here.”

Unfortunately, if you’re ever in a position where you can’t speak for yourself, your wishes are right there. That, just giving them access to the Passage Plan and showing them what’s in it so they can prescribe it to families is a really helpful tool as well.

Dr. Bob: Awesome. Those are great, and so these aren’t just real quick, little … I’m not even sure what the word is. There’s effort that goes into these. There’s work, but it’s-Stacey Canfield: Some. Yeah, there is. The Passage Plan is the most, I would say work, but even if you grabbed one page because there’s one page that really is, people find the most helpful, that’s great too. It just helps you organize a tribe behind you to get you through the most difficult part of transitioning into this, taking the whole healthcare piece of it, like what you do, Bob. You have your team in place that goes in and takes care of people, but there’s a team underneath the team, so sometimes, you have to rally your family as a team to take care of people underneath the medical. I have a really great resource in the Passage Planet that helps people walk through that piece.

Dr. Bob: Yeah.

Stacey Canfield: The portable tools like the STEPS process, the Positive Grief Method … I also lean on the Ho’oponopono. They have four really important questions that are really great to introduce people at the end of life, so yeah. They’re all organized in a beautiful way to help teach professionals how to teach Soul Sitters what to do.

Dr. Bob: Have you had a chance to go back and communicate with the professionals that you’re doing these trainings with to get feedback on how it’s being received and what it’s like for them to have this?Stacey Canfield: Oh, yeah. Yes. It’s really great. I work a lot with Kaiser in San Diego, and they had me back several times a year, so it’s really great to see the team.

Now, they’re really excited about the Dialogue Deck that I’ve had for, ever since day one. The Dialogue Deck is a free gift that I give away on my website, and it’s a series of questions that you could just use as a starter. Last time I was there, they discovered the Dialogue Deck, and they were so excited about it and how they were able to use that with their patients as well, so yeah. I get really beautiful feedback, and I’m doing a little bit more qualitative data collecting as well. It’s kind of in the working stages right now, so I’ll have a lot more stats probably by the end of the year. Yeah, it’s really fun to go back and get that in-person feedback from the professionals and the volunteers that are boots on the ground in the field.

Dr. Bob: Yeah. No, I would imagine, because so much of what we do … I mean, it’s hard to really put much structure to it. It’s the people who are working in this field and taking care of people who are seriously ill and dying. So much of what we do happens in the moment.

There are protocols for symptom management and for developing plans of care, but the real work that makes the hugest difference for the patient who’s going through this experience and to help the family have the best positive outcome for themselves, this is where the art comes in, and not everybody who’s doing it is a great artist.Stacey Canfield: Right. Right.

Dr. Bob: They have the right heart. I think a lot of times, they have the heart and the right intention, but they don’t necessarily have the tools or the right techniques to be able to apply, so giving them that will absolutely enhance their ability to serve.

Stacey Canfield: Yeah. That’s a really good point because what I found that’s interesting is that I keep getting pulled in to teach volunteer corps. These are people that aren’t the medical professionals, but they support the organizations. Every successful organization relies on a big volunteer corp, so I get called oftentimes in to train those volunteers with these tools because they don’t have to be focused so much on the medical process of care. They get to focus on these tools, and they’re bond differently with the family too because the family understands, “Okay. This is either my respite care, or this is someone for companionship, or however they show up in that space.”

They have a different kind of conversation. It’s not all medical, so they now have the tools to go in and share these resources, and that’s where I get a lot of feedback as well too is from those volunteers.

Dr. Bob: Yeah. You’re expanding the team. We’re building a very capable army of supporters, and that’s what we need, but unfortunately, people are still relying on the physicians to have all the answers, and A, there’s not enough physicians, and B, there’s not enough physicians who are really skilled or comfortable being that support, so we really need to be able to give those tools to everybody. The nurse, granted social workers are, that’s their bailiwick. That’s what they’re designed for. That’s in their DNA, but there also aren’t enough of them, so being able to build the capacity of more of the people who are interacting and being there to support is wonderful.

Stacey Canfield: So true.

Dr. Bob: I wanted to … One of the things that you were talking about in the STEPS program really struck me, and it was talking about acknowledging their humanity, and that you’re describing, thinking about Uncle Bob who’s at the grill, and he’s who he is, and what he’s been, and now, contrasting that with what he appears to be, that he’s dealing with this aggressive cancer that’s basically eroding his life force and ending his life soon. The acknowledging his humanity, it’s the same thing that I try to stay aware of and share with everybody who I can, is that humanity, that’s the spirit, right? It’s the soul.Stacey Canfield: The soul.

Dr. Bob: It’s the essence of each of us, and that essence, that soul spirit is no different when we’re in our last days or hours of life than it was when we were first born, when we took our first steps, when we had our first kiss, when we had our major triumphs in our career. That is the part of each of us that is pure, untouched by the physical … In some cases, it’s enhanced, or it may be sort of blocked out a bit because of those things, but that’s the opportunity for each of us when we’re in the presence of anybody, but especially people who are elderly, who are suffering from an illness, who are dealing with dementia. It’s our opportunity to try to connect with that part, with that essence, and that’s where the magic happens.

Stacey Canfield: Absolutely. Absolutely.

Dr. Bob: That’s where the magic happens, and it happens for them, and it happens for us in return, and recognizing that, looking for that opportunity has been such a gift for me, and I think that’s a big part of why I’m able to comfort people and why people trust, I know that that’s where you come from as well. That’s the space that you hold, and I get that that’s what you’re trying to teach.

Stacey Canfield: It’s the foundation of Soul Sitters, and in the first module of the Certification, we dig deep and realize you need to acknowledge the soul as a separate entity, that it is exactly as you’re explaining it, it’s an important thing to recognize in the end that by really elevating the experience and understanding that the soul is there, underneath all of that, exactly the word you used, but you didn’t use the word ‘Decay’, but something like that, underneath the-

Dr. Bob: It’s part of it. Right.

Stacey Canfield: Yeah. Yeah.

Dr. Bob: Yeah. All the IV tubes, and the bandages, and the skin and bones that now is your physical reality.Stacey Canfield: Yeah. Right. The soul is there, and you beautifully expressed it, and that is like the first part that we teach, is how important we can walk in and acknowledge that that soul is there, and it really allows clinicians, and even family members. If they can acknowledge that right off the bat, they’re going to see things differently. They’re going to see them with a new set of eyes, and then we can help them find out how they define what the soul is for them because everybody has their own personal definition of the soul.

Once they can tap into what that is, then they can even tap into their own definition of love, because even for a doctor, even for a daughter saying goodbye to her mother, they have their own definition of love, and maybe that definition is its compassion, or it’s contentment or having them define that will help them have their own experience because everybody’s experience is different.

Dr. Bob: Yes. That’s for sure.

Stacey Canfield: Yes. Yes.

Dr. Bob: Yeah. In giving them these tools, it’s exciting to me because we’re all about just stamping out fear. There’s so much fear that is rampant, and it’s the fear of what’s happening with the illness of, “How can I be of support?”, The financial issues, the struggles with getting the right care and getting the right responsiveness from the healthcare system. There’s so many layers.

Stacey Canfield: It’s finding peace in the process for sure.

Dr. Bob: Yeah, and this is one step. There’s other components, but this sort of comes to the heart of it, and making those connections, being able to be in that moment of support, and to stand confidently in that place is a huge gift.

Stacey Canfield: The beautiful byproduct of all this is that Soul Sitting will amplify your entire life experience long after your loved one is gone.

Dr. Bob: I get that.

Stacey Canfield: It will improve your death experience down the line.

Dr. Bob: It’ll improve your life experience, right?

Stacey Canfield: Yes. Yes. Absolutely. Absolutely, the life and death, and it’s, especially like the feedback I get when people fill out their own Passage Plan. They’re like, “Wow, I felt like I just wrote the book of my life.”

Dr. Bob: Stacey, well done. Congratulations on being so clear about your calling and what your place in the universe is. I’m excited for you. I think you’re going to touch many lives through this, the lives of the professionals that you’re working with, the lives of the people that they will then spread this real, beautiful, comforting awareness too, and we will have opportunities for follow-up. Are you open to coming on and sharing again at some point with some of the other-Stacey Canfield: Absolutely.

Dr. Bob: Yeah.

Stacey Canfield: Yes. Absolutely.

Dr. Bob: Wonderful.

Stacey Canfield: Awesome. Fantastic. You’ve come a long way, baby.Dr. Bob: Thank you. Thank you so much.

Stacey Canfield: Talk to you soon, Stacey, and thanks for tuning in, everybody. Have a great day.

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