 Tonight's program is very special to me because I wanted to dedicate it to a friend named Magery Anderson. Magery was a theologian and she ran a non-profit called the Sacred Dying Foundation. I met her at a San Francisco End of Life network meeting. There are co-sponsors up on the top of the flyer. And I said, what do you do? She said, well, I teach people how to sit with a dying. And I said, wow. And she also has a book, Sacred Dying, in her library. Magery had a stroke a month after I met her in December and she passed away in January. So if she were here, she'd be here. And I wanted to thank her for the inspiration. Tonight we have five excellent speakers and I'm going to tell you what their names are first and I'll introduce each one as they come up. Our speakers tonight are Judith Redwing-Casar and the second one is Irene Smith, Marshall White, Elizabeth Wong, and Lori Goldwin. So here we go. I'll introduce Judith first. Judith Redwing-Casar has traversed an amazing 30-plus year journey during the infancy and evolution of palliative care. Redwing is currently the Director of Patient and Caregiver Education at the UCSF Center for Education in Palliative Care. She served as Director of the Palliative Care Program at Jewish Family and Children's Services from 2007 to 2018, where she trained hundreds of community members to be palliative care volunteers for people with serious illnesses. This year in March, she received the Humanities Award given by the American Academy of Hospice and Palliative Medicine for her creative work using poetry as a healing modality with patients and clinicians. Her book, Last Acts of Kindness, Lessons for the Living from the Bedside of the Dying, will be on sale tonight after the program and she'll sign for you. Please welcome Redwing-Casar. Thank you, Janet. This is amazing to see this many people here. When I started doing this work close to 30 years ago, when you put up a sign somewhere that said, Death and Dying Presentation, two of your friends might come because they wanted to support you to do this work, but there was never a big room full of people. So things have changed in a positive way, so that's a good thing. As Janet said, when she developed this series, she thought that Megery was going to be part of it. And Megery Anderson was an amazing person who I also met in the mid-1990s because we were both starting nonprofits doing spiritual care of the dying work. Over the last few years, I worked closely with Megery and the San Francisco Palliative Care Work Group, which is a collaboration that's part of the Department of Aging and Adult Services, to ideally make palliative care accessible to all San Franciscans. So I forgot my little battery operated candle that I planned to bring in Megery's honor, but so imagine there's a candle lit. And one of the things that Megery and I had in common was our love of poetry, in particular our love of Mary Oliver. So to dedicate this evening to Mary, to Megery in Blackwater Woods by Mary Oliver. Look, the trees are turning their own bodies into pillars of light, are giving off the rich fragrance of cinnamon and fulfillment. The long tapers of cat tails are bursting and floating away over the blue shoulders of the ponds. And every pond, no matter what its name, is nameless now. Every year, everything I have ever learned in my lifetime leads back to this, the fires and the black river of loss whose other side is salvation, whose meaning none of us will ever know. To live in this world, you must be able to do three things. To love what is mortal. To hold it close to your bones as if your own life depends on it. And when the time comes to let it go, to live in this world, you must be able to do three things. To love what is mortal. To hold it close to your bones knowing your own life depends on it. And when the time comes to let it go, let go. The title of tonight is about rituals and resources for being with the dying. I wonder how many people here have had experiences of sitting at the bedside of a loved one who is dying. How many of you have had positive experiences doing that? How many of you have never been around someone who's dying? We live in a culture where so often we are separated from serious illness, from end of life. We live in a culture that still is incredibly death-phobic. We can talk about sex, we can talk about gender, we can talk about all kinds of things, especially here in San Francisco. But the D word of death is still difficult. When I started doing this work in 1988, it was at the bedside of my best friend, who was 30 years old. I was 35. And we didn't expect 30-year-olds to die back then. We expected, like most people in America expect, that you're going to get to live to be a ripe old age, maybe in your 80s or 90s. And then everybody wants to just pass away in their sleep. But my friend was in a motorcycle accident on Highway 101. The good news was she was near Marin General Hospital. They had a great neurosurgeon. The bad news was she was not wearing a helmet. And her head was about this big. And I spent three weeks at her bedside in the intensive care unit at Marin General Hospital. And this was before I had an RN degree. And so I would go in there every evening when things would quiet down in the ICU. And I would lay crystals on her body. And I would sit and sing or chant or read poems to her. And the numbers on the machines, her heart rate and her blood pressure and the pressure in her brain would all start to come down. And the nurses would run in and go, what are you doing? Oh, nothing. Just sitting here with my friend. That was when I really learned the importance of ritual and the ceremony at the bedside. And it was also when I learned, because every day when I would walk into that ICU room, I would sort of hear a voice. Now, I don't always hear voices, but the voice was very much like my grandmother's voice, because a birth midwife in Russia in 1880 something. Basically saying to me, your work in the world is to be a midwife to the dying. Because just as spirits need someone as they're coming into this world, into a body, spirits need some kind of witnessing or assistance as they're leaving the body. And most families need someone to hold that space with them and for them, especially if they've never sat with someone who's dying before. So it was very clear to me that the gift of my friend Kim's death was that she showed me the path to the work that I was supposed to be doing in my life this time around. I'd been a pre-med dropout in the early 1970s, deciding that Western medicine was crazy, but at that point I realized that if I was going to have a legitimate way to get to the bedside of people who are dying in the system, I needed some kind of license to do that. So that was when I became a nurse. I went through the ranks of oncology and critical care, where I really learned how people should not have to die. And then on to hospice and palliative care, which is what I've been doing for the last many, many years. In the midst of it all, working with a non-profit, teaching workshops on being with dying, and understanding more and more from the medical perspective, how little we offer people when their loved ones are dying in the world of Western medicine, especially in hospitals, that just like we divorce ourselves as a culture from our own mortality, our healthcare system even further divorces us from looking at the person in the bed as the lung cancer in room one, the diabetic in room three, the liver in room four. And yet to those people's loved ones, that is their loved ones. So when I worked, I ran a little intensive care unit in a small rural hospital for a number of years, and I would really encourage families to do whatever ceremony and ritual they needed to at the bedside, even though it was in the hospital, because that was where their person was dying. And we teach clinicians by doing these things, by being assertive and saying, wait a minute, there is this one person and most of these, a lot of stories, my book is really stories of people who I midwife in the dying process for many, many years, some in hospitals, some in facilities, and some at home. And I partly wrote it that way so people could understand that there are qualitative differences that happen at the death of someone in those different places. Now if we don't think about how we want that time of our life to be, and if we don't talk to people about it, then it's not really likely it's going to happen the way we want it. So there was this one instance in the ICU where this man came in having had a really horrible heart attack, and this was in a small rural town, so everybody knew each other, and he was kind of, he had been a restaurant owner and kind of a character in the town. And when he came into the ICU, it was like, oh my gosh, what are we going to, you know, of course he was hooked up to every machine and tube possible that we have to keep people alive, and we can keep people alive for a very long time. And his son showed up, his son lived a few hours away and said, oh my god, my dad would not have wanted any of this. So we sat down, we talked like, okay, what would he have wanted? And he said, my dad would have wanted some kind of ceremony. Even though my dad wasn't religious, he was culturally very Jewish, he would want his talit, his sacred prayer shawl around him at the time of his death. So we said, okay, let's do that, let's create a ritual here in the ICU. And so the son's wife went to his house to get his prayer shawl, and as she was leaving the ICU, she said, now you know what, he would really want a champagne toast at this ritual too. Can I bring back some champagne? Like sure, you know, we're talking to four bed ICU in a small hospital where I was in charge. So it's like, of course you could do this. So they came back and I sort of describe in the story in the book that there's this dance that nurses and respiratory therapists have to do together when you extubate a person, which means you take the tube that's down their throat into their lungs, assisting them to breathe or allowing them to breathe, and you take it out. And you know, there are a lot of studies in this country about the main way that Americans understand life support is from what they've seen on television. So I will tell you as an ICU nurse that how it looks on television is not how it looks in reality. You know, George Clooney or Dr. Kildare or whoever it is is not standing at your bedside. The people who are in the bed, their hair is not done and their makeup is not on. And when you pull out that tube, they really do not look good. So there's this dance that the respiratory therapist does and the nurse and the suction and the pulling of the tube and the untapping of everything. And when you pull it out, you never know if that person is going to live for 10 seconds or 10 minutes or 10 more days. And so we had his family prepared for whatever would happen. The respiratory therapist graciously took out the tube. We had this beautiful prayer shawl wrapped around him over the ugly hospital gown. And I was holding his feet because I always believe it's important to ground a being who's dying. And as we ex-debated him, we sang the Jewish prayer. And the tube was out and he took his last breath. And it was a beautiful ceremony in a very strange environment with all the bells and whistles that we had finally turned off. Partly this is to say that so many people say they want to die at home. Partly because we know we can create the kind of ceremony at home that we want. We can create more of an environment that we feel would be a really peaceful and healing space. As we do our last dance on this earth. But not everyone can be at home. For some people their pain is not able to be managed at home even though most of the time we're able to manage pain at home. When I teach advanced care planning, I always talk about the fact that if you say in your advanced directive, which I hope everyone here has one, if you say you want to die at home and have certain kind of ceremony, you also have to make sure that you have the resources to do that. Because dying at home is not always easy. You need either friend and family resources of a circle of people who are going to be able to attend you 24-7 or else you need financial resources to pay for help to do that. And without either of those things, usually people die in hospitals or in facilities. Which is often fine and for some people they feel safer in those places because they can press a button and a nurse will come, hopefully in a timely manner with the medication that they need. But it's really important as the loved ones of that person to know that if they were the kind of person who had values that reflected whatever kind of rituals and ceremony whether it's religious or some other kind of spirituality, that we can't be afraid to tell the facility or the healthcare system that we need to stop for a minute. We need to recognize that this is not the liver patient in bed 2. This is Sam. This is Sally. This is my family. This is my loved one. And it's okay to tell the nurses and the doctors and everybody we need things to stop. When I was the clinical director at Zen Hospice Project for a couple years back in 2004 we taught people there about what it means to just sit and be present at the bedside. Which I've continued to do in my teaching career for over the years. People say, well, what should I do? You know, again, we live in a culture where we're all doing all the time. Usually send things at once. It's not about doing. It's about being. It's about just showing up and being present. You don't have to say the right thing. You don't have to do the right thing. It's helpful if you know what the right and wrong thing might have been for that person. I had a patient some years ago who took forever to write her advanced directive even though she had metastatic cancer that we thought she was going to die of for a couple years. And finally when she wrote a whole essay about how she wanted to be treated at the end of life. One of the things she said was, I do not want to be touched by anybody. I don't want anybody holding my hand. I don't want anybody touching me. I don't want Reiki. I don't want any of this boo boo stuff. I don't want prayers. I don't want music. I don't want anything. If I have to have music, she was like it has to be Bach or this certain Mozart or this certain this. It was pages and pages of this amazing essay. But with things that I would never have known about her if she hadn't put it in writing. You know my tendency as a nurse when I approach a bedside is of course to touch a person. Thinking that's going to be a comforting thing. And suddenly to find out this was totally not a comforting thing to her. And I had probably done it to her at least a dozen times. So we get to tell people what we want and don't want for our personal ritual as we're dying. And we get to ask or we get to just show up for the people that we love. I learned a year or so ago at the bedside of a dear dear dear friend who was dying in the hospital that I had to add into my advance directive that I did not want anyone at my bedside with their cell phone on. Because this was a woman who absolutely wanted sacred space at the end of her life around her. And her friends which she had many many many friends who loved her dearly. And they all knew that. But there were some people in her blood family who came from far away from a very different world and reality and did not know that. And to have people talking on cell phones and arguing about mundane and crazy things at the bedside of someone was just it was awful. And it made me realize oh if that's really important I have to make sure that my agents on my advance directive really know what kind of space they want around me and feel empowered enough to be the gatekeepers to create that space. So I'm aware that I could go on all night and then we have a whole panel of people to talk here. I have a sign in sheet on the table. This new program I work with is called the Mary Center for Education and Palliative Care at UCSF. Mary is M-E-R-I named after the person I just talked about. She was a person who had metastatic cancer for 26 years and was someone who insisted that every clinician that she met with bring their whole self and their whole humanity to every encounter. And that is really what we are basing the Mary Center for Education and Palliative Care on. We're doing education of clinicians at UCSF. Every month I do a two-part advanced care planning workshop that is free for anyone who needs to revise or do a new advance directive to make it meaningful and there are flyers on the table about that. And we're going to be doing all sorts of interesting music and poetry and palliative care related events over these next few years. So please sign up on the sheet if you are interested in being on our mailing list. And I'm going to end quickly with one more poem. This was written by Mary Jane Block, the woman with 26 years of metastatic illness who was also a poet. And this is about the kind of showing up with ritual that we do at the bedside. It's called We Are Sustained, We Are Transformed. By the love of friends. By the daily arrival of mail delivered by our neighbors. By the dusk sky turning Maxfield Parish blue. By the handmade rolls anonymously left at our front door still warm from the secret donor's oven. By the email of the ones who got away 20 years ago. By the immediate yeses to requests for help so nervously sent. By the soothing blanket of the opiate painkiller. By the doctor with the gold hoop in his left ear who listens. That would be the doctor who I work with in the Mary Center. By the medical assistant who says you're always so nice to me. By the friend who brings cabbage borscht and pierogi for lunch. By Vietnamese coffee ice cream and ginger lemon sorbet. By the warmth of the sun unaccompanied by wind. By writing together. By laughter. Thank you, Red Wing. Our second speaker is Irene Smith. Irene began her journey as a massage therapist in 1974. In 2001, she founded and currently directs Everflowing, an educational outreach program dedicated to teaching mindful touching as an integral component to end-of-life care. As director of the internationally acclaimed nonprofit, Service Through Touch, Irene established massage projects for persons with HIV AIDS worldwide. Irene teaches healthcare providers and body workers tactile support skills for caring for ill and dying persons. She has been honored with several awards for her work, including For Those Who Care by KRON TV. She was the West Coast Assistant for over 10 years to Elizabeth Kula Ross, a pioneer in the death and dying field and author of the groundbreaking book on death and dying. Irene will have copies of her DVD and book, Touch Awareness in Caregiving, on sale after the program. Everyone, please welcome Irene Smith. Pressing the wrong button. There it is. There we are. Supposed to press the red button. We're pressing the silver button. Touch is an action conceived in the heart given birth by the hand. And in the words of one of my favorite American poets, Galway Kinnell, in one of my very favorite poems, St. Francis in the South, the sentences are, sometimes it is necessary to reteach a thing, its loveliness, to lay a hand on its brow and to retell it in words and in touch. It is lovely. So is the touch component to working with the dying. Touch at the bedside of the dying isn't about fixing, changing, healing or correcting anything. It's about honoring, validating and respecting the sacredness of the experience that we find ourselves in. And it's really amazing to me after 36 years at the bedside of the dying providing touch and massage. It's amazing to me how sophisticated the hospice dynamic of care has become in honoring the emotional aspects of the dying process and of the person who's dying, honoring the psychosocial aspects and the spiritual aspects of dying. And 36 years later, there really hasn't been a change in the training for the nursing assistants or the attendants that actually handle the body. With the evening being rituals and resources, I really ask you to look at the primary ritual that's happening at the bedside when your loved one is dying and the primary ritual that is happening is the providing of the care, the feeding, the dressing, the changing, the bathing of the sacred vessel, the physical body. Someone asked me not too long ago, who do you want at the bedside when you're dying, Irene? And I said, I want someone at my bedside who understands that every single cell in my body has pure consciousness. I want someone who understands that that consciousness never disappears and that whether I can tell you that I can feel your hands on me or not, my body feels you and I want that care provider to understand that. I want a care provider that understands that my physical body is the sacred vessel that houses the spirit and I want it treated as such. Whether I can speak or not, I want my body handled in the sacredness that is presented in the consciousness that never disappears. So for me, rituals at the bedside is the providing of the care. What more sacred of a ritual can we present than bathing the body? There's a dear woman in the Tenderloin named Marianne Finch and Marianne teaches... She teaches people from the church, from all over the world how to work with the homeless using massage but she calls it anointing the body and she calls putting the lotion on the body, anointing the body and she teaches massage, she teaches touch as a sacred offering and so healing touch at the bedside of the dying. What is that? First of all, what's touch? Touch is our most encompassing sense. Our sense of touch actually encompasses all of the other senses and at no stage of life do I feel it's more important than when someone is dying that we realize that touch is on a dual pathway of stimulation. We're very familiar with the tactile stimulation of touch. But touch is also non-tactile. We are touched by what we see. We are touched by what we hear. We are touched by what we smell and we often touch our hearts in relationship to being emotionally touched deeply. Very important to understand that we are making contact when we speak. We are making contact with the eyes. We are making contact with our body movement, our breath. These are all the personal rituals of our own presence. We are a ritual. Every step that we take is a ceremony and being alive. And every movement that we present demands a response from the nervous system of the other people. We are the ceremony and we have the opportunity just through and I think Red Wing talked about at the Zen Hospice Project just being present when we really become aware of the ceremony of our presence, of our beingness and we bring that awareness to the bedside and the awareness that that beingness is touching the dying, touching our loved one. This is a very sacred ceremony to become aware of. Touch is our original language. It's not something that we learn. Touch is the way we develop relationship with the world when we're born. It's the way we develop relationship with our own bodies until we are trained in a verbal dialect and we are conditioned at the same time not to touch and in almost every single phase of our lives we are taught more conditions of why we should not touch. Not too long ago I was doing a touch awareness and caregiving workshop and it was a young woman who was a nursing student and she said Irene this is a wonderful presentation and I'm really enjoying your stories but our nursing professor has told us several times not to touch our patients and I said I understand I hear you and I understand what you just said to me but I'd like to ask you a question do you ever bathe your patient and she said yes I do and I said would you please demonstrate to the class how you bathe your patient without touching them and then I asked her if she ever turned her patients in the bed or if she ever transferred her patients from a bed to a chair and she just kept saying yes and I kept saying can you demonstrate that without touching your patient we have become so separated from the fact that touch is most encompassing sense about us and that we are touching in almost every single action that we move through I see people writing what's allowing you to hold that pin it's because you can feel it and what's allowing you to actually sit in this chair it's because you can feel it how did we walk into the room our sense of touch let us know when we were touching the floor so touch is not something that's separate from what we are already doing touch is who we are in this moment it allows us to move through the world there have been I love the music very zen very zen there have been people that have lost their sense of touch and they have learned how to function in the world with vision but not everyone so when I say I've been providing touch at the bedside of the dime for 36 years that can be that can be when someone's actively dying can be dabbing the perspiration off the forehead in just that very conscious gentle way with awareness it can be swabbing the mouth of someone with eye contact being very grounded and centered in my own body being sure to breathe and recognizing that that swabbing of the mouth is a sacred ritual and it is not to be discounted or hurried because the massage therapist is on her way if people ask me what I have done most of the time in my 36 years of providing massage at the bedside I would say that 70% of the time was to ease the unskilled and uncomfortable touch that it happened before I got there why? because so often the care providers don't understand that they are the healers the care providers are the healers and the feeding and dressing and changing and bathing and transferring of the rituals in honoring the sacredness of the body so there's actually three models that I see for implementing touch into care for the dime and the first one I actually introduced I'm considered the grandmother of the hospice massage movement I introduced hospice massage in 1982 and this is a model that's very well utilized all over the United States we're going to hear from Michael Marshall I just gave you a new name we're going to hear from Marshall from Hospice by the Bay next and Hospice by the Bay has been utilizing massage practitioners for 25 years all over the Bay area they've been absolutely phenomenal in providing that service and so a massage practitioner can be contracted to come in and this is a good thing but there are two more models that I'd like to speak to I've had a lot of daughters over the years contract me to see their mothers I can just see actually I can see many faces going in front of me right now one particular person by the name of Gayle asked me if I could please come and see her mother two times a week and I said absolutely and she explained to me that her mother had not spoken in a couple of years and that her mother's eyes had been closed for that long of a period as well and that there was very little movement but that her mother always liked to be touched and she wondered if I could come and provide some foot massage and I said sure I can do that she said I'd also like to be in the room do you mind and I said not at all I really love to have family in the room so please the first couple of times that I went maybe it was more than a couple of times the first several times Gayle came and she sat across the room against the wall very quiet I provided some very gentle foot massage for her mother and somewhere down the line I don't remember how long it was Gayle said do you mind if I sit a little closer at the bed I said no please sit at the bed and she sat at the bed for a few visits I don't remember how many and then one day she said do you mind if I sit right at the bedside and I said no please sit right at the bedside she came up and sat at the bedside and during the foot massage I looked over at Gayle and I said would you like to join in and she said oh yes I'd love to join in and I said would you like to put some lotion on your mom's hands while I'm sitting down here at her feet oh yes I'd love to put some lotion on her hands and the next few visits that I had with her mom were actually me and Gayle and Gayle would do a little bit of gentle stroking on her mom's hands I'd do a little bit on her feet and then one day I arrived and the lights in the room were turned way down and Gayle was already there and she had the bed rail down at the bedside and she was sitting very close to her mom and she was just stroking her arm stroking her hand and she looked up and she said oh come on in I went in we had a session the next time that I went I went into the room the lights were down Gayle was already there she was brushing her mom's hair just as slowly and consciously and tenderly as she had witnessed the stroking of the feet and she said oh I hope you don't mind I came very early and I put some lotion on mom's arms and hands and then I thought I'd just brush her hair and I went over and I gave Gayle a hug and I said see you later you don't need me anymore this is one of my favorite models for introducing the ritual of touch at the bedside of the dying is to model simple stroking structures that the family can reenact when I'm gone because they do exactly what I do when I'm not looking that's just the greatest form of teaching and we all want to remember that that whatever we do at that bedside is reenacted and the other model is to as much as possible empower, validate and support our nursing assistants home care attendants, nurses letting them know that they're healers and validating that feeding, dressing, changing and bathing are extraordinarily sacred rituals of providing care and that with three components can be integrated into their shifts number one, being aware of where you are in the present moment I'm going to ask everyone in here to feel your feet on the floor if your legs are crossed just put them down just become aware of your feet on the floor just feel them and now I'm going to ask you to breathe just breathe and when you breathe I'm going to ask you to feel your belly feet on the floor breath in the belly I'm going to ask you to feel your back in the chair feet on the floor back in the chair breath in the belly and now not only inhale I'm going to ask everyone in here to exhale too let the breath out there you go let the breath out and when you do become very aware of your feet and whatever part of your body is touching your lap it might be your elbows it might be your forearms it might be your hands I want you to become aware of the part of the body that's touching your lap don't need to change it just become aware of it and if you have your eyes closed I'm going to ask you to open them for a minute we can just encourage our care providers to be in their bodies to become aware of where they are in the moment and I'm going to ask everybody to shake your hands out and I'm going to ask you to just do a little exercise with your hands excellent and then I'm going to ask you to just place your hand on your forehead and I'm going to ask you to just leave it there for a moment and I want you to become aware of the temperature of your hand the texture of your hand this is your hand this is your touch this is how your touch feels now you're feeling the floor you're feeling the chair hopefully you're still breathing and you're feeling your touch on your forehead and what I'd like for you to do is to simply stroke across your forehead as you bring your hand back down to your lap we can just encourage our care providers to be in the current moment grounded exhale and become aware of their hands simply becoming aware of the tactile contact within the care providing ritual that they are performing whatever we can do to bring those simple little aspects of providing care into the ritual of care providing training let's do it thank you so much thank you, thank you Amy Marshall White began his journey with death and dying as a child in his grandparents' home at the bedside of his great aunt Lee before hospice services were widely available he served at Navy Hospital in San Diego and witnessed firsthand many people dying he graduated Naropa University with a Masters of Divinity and a Certificate in Gerontology and began practicing as a professional hospice chaplain he has worked for over a decade at Hospice by the Bay his chaplaincy is informed by over three decades of Buddhist meditation and the practice of martial arts, Aikido ladies and gentlemen, please welcome Marshall White hi everyone, my name is Marshall and it's really an honor to be here it's an honor to do this work and it's really an honor to be here tonight with all of you it was so wonderful to see so many hands of people who have been at the bedside of your family members and friends I want to thank Red Wing for those beautiful stories and the historical context and those really hard, practical things we have to keep in mind and Irene, you are a treasure and I just feel like I'm so in my body right now it's wonderful I'm really honored to represent hospice I think I'm the only actual hospice employee up here and I actually want to I'm so grateful that I can represent hospice and the hospice team and also I'm grateful that I'm the only one and that we have not over medicalized this panel and I'm very grateful for that I serve as the spiritual care manager at Hospice by the Bay and I think the first thing I want to talk about is talking as a professional care provider the difference between being in the room with someone who's dying as a family member someone who's really close, a parent, a spouse a sibling, kids or a very, very close friend and being a witness either a more distant friend or a healthcare provider because they're very different and they have very different dynamics and it's really important we don't get them mixed up one of the things for some of our employees at Hospice by the Bay if their own family member gets sick if they're going to the bedside of their own parent and something I hear very often is I do this all the time, shouldn't it be easier? No, you don't do this all the time and you can't get those two mixed up I learned this when I was going to Naropa and Colorado was working at an Alzheimer's facility and I was the activities director and I realized that there could be a man sitting here and I'll sit with him and he's waiting at a train station and this is an dementia facility and so, hey, I'm going to Detroit, where are you going? We can have this great conversation and I can learn so much and he's benefiting from this conversation I am and then his daughter walks in and she's going to have a completely different experience of this because this is her father this is one of the people who looked into her eyes and said her name and it's going to be a completely different experience so my, it's the same situation but we have a different relationship to it I, as an outside person, more of as a witness I get to hold the space I get to really look at this person for who they are right now and appreciate them, listen deeply and bring some of these characteristics that you might associate with meditation and those like clarity and alertness and really being responsive and being open-hearted on the other hand, when you're coming as a family member you have a completely different role there so if you think of as the witness as professionals or volunteers or distant friends as more of a spiritual it is a spiritual practice when you come in as a family member it's a soul practice you're going down your life is going to change and you're going to be inundated with these memories these feelings and you realize your life is going to change because your family is going to change and what I tell my fellow hospice employees at this time take off the name badge and jump in the pool with everybody else because this is going to be a journey of grief I experienced this myself last calendar year I had two deaths in my family I had an uncle, a very close uncle die and also a step-brother and I was present for my uncle down in Pasadena and I was not able to be present with my brother but my sister was and I was on the phone with her but I wanted to talk a little bit about being with my uncle and trying to let go of this idea that I knew anything my uncle had been blind most of his life and he was very fiercely independent he owned his own house in Pasadena had his own caregivers he was able to get by independently and just by being so incredibly stubborn his name is Frank and he loved tall ships, wooden ships and he would go out on these wood ships with the Los Angeles Maritime Museum and he would be able to describe everything as going on even though he couldn't see because he could hear it and he knew so much about these old wooden ships and he was so proud of his house and so I went down he was in the ICU and I went down I put him on hospice and I want to talk something that Irene said a few moments ago about believing that every cell of your body is awake and aware and one thing that I like to do when I walk into a situation and what she also said was you're not going to control anything and realizing that there's no control you know I'm just a player in this and I'm just going to walk in and actually it's almost like permaculture if you know what permaculture is you walk into this area of land and you ask what wants to be here not how am I going to put my garden my idea of what the garden but what does this land really want you walk into a situation and you ask what wants to be voiced here what wants to happen and got my uncle Frank out of the ICU onto a regular bed and went and talked to him and I said you know we have hospice set up at your house I know Frank that you love your house and I got the bed all set up and we have caregivers we have your caregivers there at the house I thought it would be really fantastic especially for the caregivers to be able to take care of him for these last days or hours and so we had this all set up and I got down at the bed and I said Frank that's what you want the ambulance is coming at 6 o'clock tonight and we're going to go back to your house but it's also okay if you want to stay here and die here that will be just fine too so I'm just going to trust that whatever you want is going to happen and then the next part I wouldn't believe it if I heard someone telling me but I was there it happened he opened his eyes it was the only time during this whole time that he opened his eyes there was no movement in his eyes or any awareness in his eyes but he opened his eyes for a few minutes and he closed them and then he just started to decline and long before 6 o'clock I was there at his bedside reading his favorite story Mr. Toad and Toad Hall and those stories and singing to him and the ambulance driver came at 6 o'clock and I said it's not going to happen just look at him look at his breathing and he passed five minutes before he passed his priest showed up his favorite caregiver came and I couldn't have orchestrated any of that and I felt like it was because I walked in I just told him what's going to happen what do you want how can you help me to help orchestrate what's going to happen here and it all happened beautifully and one more thing I'd like to suggest this whole thing about not taking the medical the medical thing out of it we can also call it colonization of our body take the heartbeat monitors off and one thing I really like to do is to let everybody know we're not going to wait for the last breath we're actually going to wait for a couple minutes afterward this is actually anatomically correct because often when the breath stops the heart is still going and I believe there is still this transition going and so it actually takes the expectancy of that last moment try to deflate the intensity of that last moment we're going to wait up to the last breath through the last breath and then we're going to wait for a couple minutes more and then we can start talking and singing and telling stories and all the things that happen afterwards that feeling of relief that happens afterwards let that transition happen very very very smoothly so thank you everyone I'll just take my 10 minutes and truly an honor to be here thank you Marshall our next speaker is Elizabeth Wong Elizabeth is a registered nurse supporting women in childbirth three years ago as she was caring for her aging mom she wondered why support was not available for people accompanying those who are struggling with end of life issues she realized she wanted to support adult children who will be or already are confronted with their own aging parents Elizabeth completed the doula givers training and now partners with doula givers to share this training by offering free community end of life doula training in the Bay Area today she'll talk about her work Elizabeth, please welcome Hi, I'm Elizabeth and it is such a privilege and honor to be here with the panel here as Janet said I am a labor and delivery nurse and have been for most of my career and I still continue to work with high risk pregnant patients and what I'm hearing from Red Wing and Irene is just having me get present to what it means to be a nurse and a healer I didn't even realize this but as a labor and delivery nurse I have been doing this work of creating rituals touching my patients providing touch and helping them transition through the laboring process for birth what I'm here to talk about is actually end of life doula or death doula and I'm just curious to see a show of hands how many people have heard of that term death doula, death guide, soul midwife how many have not D-O-U-L-A and more commonly people are aware of doulas in the birth setting like labor birth doulas and they play a role where they provide they're a non-medical professional role so they're just regular people family members, friends who show up for people who are at birth they provide physical, emotional and spiritual support for those who are going through birth and as Janet said when my mom got sick it was her first time being in a hospital setting since she gave birth to my sister and I she doesn't speak English really well and when I brought her to the emergency room not expecting her to be admitted and here I am, I'm the nurse but like Marshall said I'm actually a family member now hung up my hat like what do I do, I don't know what to do but as a nurse it's instilled in me that I'm still a patient advocate whether it's for my mom for my patients and so in that moment when my mom was asked the question what's her code status she of course said why is she asking me this right now and I said mom it's okay we've had this conversation before and I was translating for her I said you have to say it, I'll translate it for you and she goes oh no I don't want any of that and so she was a do not resuscitate and the reason that only took a minute was because we've had these conversations ongoingly way before she arrived to the emergency room and while she was admitted for two weeks she was really ill the doctors know her to be the feisty patient she wouldn't let you come toward her unless you explain to her what you were going to do to her so this whole idea of touch is as a nurse I would always ask permission may I touch you, with my mom you couldn't touch her without even telling her what you're going to do and so through it all seeing my mom what I really got was she was just scared she didn't know what was going on the hospital is very sterile is very foreign to somebody but who I got to be in that moment was what I actually later on realized was an end of life doula I was a non-medical person in this space providing physical, spiritual and emotional support for my mom and because I was a nurse I was able to understand what nurses do as well I know they have other patients to tend to so I would tell them it's okay I can help my mom to the bathroom and when the doctors came in they would say the procedure that they were going to do for my mom and then they have to leave because they have to visit the next patient I got to stay at the bedside and translate and explain to my mom in more detail in layman's term what that procedure looked like just for an example she doesn't have diabetes she's a little bit in denial but she had a severe infection that caused her blood sugar to go up which required her to get some insulin while in the hospital she was so upset she wouldn't let the nurse administer the insulin and I was able to be there at the bedside to explain to her the physiologic processes and I really literally had to break it down that you have an infection the bugs love your blood because it's very sweet and you may only need this insulin just for now you don't need it when you go home but we really need to control your sugar so that the bugs can leave your body and she understood and she accepted the medication so being that person at the bedside that has the time to explain in detail what we are wanting to do will make a difference whether or not the patient will accept the treatment or not and it's not our place to make them do anything but we owe it to them to be able to give them informed consent to really be able to explain that now as death doulas we're not there in the medical we're a part of the medical team and I like to, I've worked with labor doulas on the labor floor and there's mutual respect for everybody after I my mom got discharged and she's doing well I started to look into how do I do this more like I didn't even know how to do this I didn't even know what this was all about and I really wanted to look to see if there was such a role and then that's when I came upon doula givers and so just wanting to let you know that with death doulas and end of life doula there are training programs out there doula givers being one of them and also the international end of life doula association which Lori also did her training for anybody that's interested or looking to either learn how to be an end of life to learn the skill you can come up and talk to me I'll be happy to share about it and then also the other thing about doula givers is that we do provide end of life doula training to the community as a service because we believe that if you teach the skill you can change the world it's a skill that used to be passed on from generation to generation and because we don't see it now we don't even know how to be that and so for us it's not so much if you want to choose it as a profession because now there is this movement of death doulas wanting to do this as a career but going back to who I was from my mom is really to have everyone take this education so that they get to learn the skill so that they can be present for their mother or their daughter or their father or their friend that's all I have to say thanks Elizabeth our next speaker is Laurie Goldwin Laurie has been a palliative and hospice volunteer since 2013 she became an end of life doula after training with Inelda Inelda means international end of life doula alliance in 2016 she is also a birth doula she is one of the founding members of the east bay end of life doula network and tonight she'll talk about her work please welcome Laurie Goldwin and you wait for the numbers to come up when numbers come up it's on and the numbers coming up oh well hold it down hold it down until they stay you don't want this oh does that work? does this work? well I think everybody said most everything so I'll wing it here I started my journey to become an end of life doula when I had a home birth with my daughter 32 years ago I mean pretty much I was so impressed with myself that I was able to accomplish that even I I mean it took 51 hours from start to finish but nonetheless I did that and I felt like I wanted to help other women achieve a natural birth especially in the hospital it's pretty impossible to have a natural birth in the hospital not that I'm biased but not many people knew back then about birth doulas they weren't very common but now they're very common place almost every pregnant woman you ask has a doula and I really believe that the same thing is happening now with end of life doulas that pretty soon doulas are going to be an integral part of end of life care and I discovered the similarities between birthing and dying when I was with my mother nine years ago when she died I was stunned by the similarities and one of the nurses at the inpatient hospice was had been a midwife and so we had a very interesting conversation about it and I waited a while you have to wait at least a year after the death of someone close to start working in the field and I decided to take training through Jewish family children's services with Red Wing as one of my teachers and it was an amazing program so I did hospice and palliative care volunteer for a while and then I felt like something was missing I thought there just isn't I'm not going deep enough should I become a chaplain what should I do and then I heard there was such a thing as end of life doulas and I was like that's it having known what birth doulas do it's the same service model it just made perfect sense so I took the training and in 2016 and I've been doing it ever since many of the same skills that apply in working with laboring women apply to working with dying people that people have expressed such as you know just being present and patients and not you can't change what's happening you can't fix this you can't do anything about the inevitability of birth and you can't do anything about the inevitability of dying it's an intense ultimate experiences both ends of the spectrum that we all go through these life it's life and death right it's a matter of life and death dying and birthing