Latest / Daily Influence / 844. End-of-Life Planning: Protecting Dignity, Autonomy and the People You Love
Transcript
- 0:10[SPEAKER_00]: Welcome to Daily Influence, your daily dose of positive influence.
- 0:14[SPEAKER_00]: I'm Brian Smith founder of IA Business Advisors and co-author of the Iain team series.
- 0:19[SPEAKER_00]: Each day we share stories and insights to help you find be and build your influence in a positive and responsible way.
- 0:27[SPEAKER_01]: And I'm Greg Clino, partner at IE Business Advisors, and co-host of Daily Influence.
- 0:32[SPEAKER_01]: Be sure to follow, subscribe, and share Daily Influence with someone who could use a little extra positivity today.
- 0:38[SPEAKER_01]: And make us part of your Daily routine, whether it's during your commute, on a walk, or an quiet momentous for you, because you're influenced matters.
- 0:48[SPEAKER_01]: Welcome to Daily Influence.
- 0:49[SPEAKER_01]: Today, I'm joined by Sandy Bianchi, an end of life, Dula.
- 0:54[SPEAKER_01]: Founder of Shepherd, U-Home, and co-founder of the Chicago Death Dula Collective.
- 1:01[SPEAKER_01]: Sandy provides non-medical support, education, advocacy, and compassion to individuals approaching the end of life, and to the people who'd love and care for them.
- 1:12[SPEAKER_01]: Her work is deeply influenced by her Mexican heritage,
- 1:16[SPEAKER_01]: and the communal traditions surrounding death that she witnessed as a child.
- 1:21[SPEAKER_01]: Devils something many of us avoid discussing until a crisis forces the conversation.
- 1:26[SPEAKER_01]: But that avoidance can leave individuals without a voice, and families trying to make significant decisions without knowing what their loved ones truly wanted.
- 1:36[SPEAKER_01]: Sandy's work reminds us that influence is especially important during vulnerable moments.
- 1:42[SPEAKER_01]: Responsible influence means listening without imposing, expecting others personal values, and helping people preserve dignity and autonomy, even when circumstances feel beyond their control.
- 1:56[SPEAKER_01]: Today, we'll discuss what that do is actually do while conversations about mortality matter long before the end of life, and how preparing for death can help us make more intentional choices about how we live.
- 2:10[SPEAKER_01]: Sandy, welcome to Daily Influence.
- 2:12[SPEAKER_02]: Thank you.
- 2:13[SPEAKER_02]: Thank you, Greg.
- 2:14[SPEAKER_02]: Happy to be here and to share.
- 2:17[SPEAKER_01]: Sandy, many people have heard the term Death Dula, but may not understand the role.
- 2:22[SPEAKER_01]: What does a Death Dula provide?
- 2:25[SPEAKER_01]: And what are the boundaries between your work and responsibilities of medical, legal, hospice, and funeral professionals?
- 2:33[SPEAKER_02]: Great question.
- 2:34[SPEAKER_02]: So, a good Death Dula is a great listener.
- 2:43[SPEAKER_02]: and respectful.
- 2:45[SPEAKER_02]: So with that, in order for us to fill in the gaps within these other sectors, hospitals, hospices, funeral homes, we need to respect the fact that there's safe boundaries for these institutions that are set in place.
- 3:02[SPEAKER_02]: That's why there's rules, limitation of what
- 3:12[SPEAKER_02]: because they have to abide by these subtle rules.
- 3:15[SPEAKER_02]: And a death duo will go in and see the gaps, we are very resourceful, creative individuals.
- 3:24[SPEAKER_02]: So we'll see the gaps and how we can fill those gaps without overstepping our own boundaries.
- 3:31[SPEAKER_02]: Again, we're non-medical support.
- 3:33[SPEAKER_02]: I did not invest time or money into,
- 3:38[SPEAKER_02]: education to teach me about specific biology.
- 3:42[SPEAKER_02]: At the end of life.
- 3:45[SPEAKER_02]: I'm through my experience to in this work for 10 years and I'm seeing my maternal grandmother and how she, she was the good on that, the healer of her village in Mexico and so as an early age, watching people come to
- 4:01[SPEAKER_02]: and using herbal remedies and the resources she had available within her own land and culture assisting others.
- 4:10[SPEAKER_02]: So I know what I don't know.
- 4:12[SPEAKER_02]: I know in order to protect myself and be liable because I overstep my boundaries.
- 4:25[SPEAKER_02]: I respect those other sectors.
- 4:29[SPEAKER_02]: I also, when I started doing this work and you, okay, this is what I want to do.
- 4:33[SPEAKER_02]: I want to serve as people at the end of the life, make it less scary and provide autonomy and dignity, because we all come here with free will.
- 4:44[SPEAKER_02]: How can I do that without going back to school,
- 4:54[SPEAKER_02]: do it in a way that's going to not only serve others best, but myself as well.
- 5:00[SPEAKER_02]: I started volunteering at Swedish hospital first, and then from there I started volunteering at hospice.
- 5:08[SPEAKER_02]: And I quickly realized that nurses and staff members did not have not only the authority or time to invest special care and attention, emotional support,
- 5:24[SPEAKER_02]: um lack of emotional and spiritual support to the individuals that need that support.
- 5:33[SPEAKER_02]: As a death duila, I have found myself brushing hair, even getting into bed with individuals who
- 5:46[SPEAKER_02]: I have built a rapport with and I'm not intimidating also as a death deluxe.
- 5:51[SPEAKER_02]: I'm not wearing the uniform, I'm not talking speaking this dialogue with words you can understand a death deluxe humanizes that whole world, especially when you're scared.
- 6:04[SPEAKER_02]: You don't know what's going on, you don't want to be there, you want to be at home.
- 6:16[SPEAKER_02]: adhere to this institution, right?
- 6:19[SPEAKER_02]: And every death dula brings in their own life experience, every death dula has their own niche.
- 6:26[SPEAKER_02]: Some death dula's like to be at bedside, holding visual.
- 6:31[SPEAKER_02]: Others don't, and they prefer to help people put their things in order, paperwork,
- 6:42[SPEAKER_02]: something to do within death care.
- 6:45[SPEAKER_02]: Some are musicians.
- 6:47[SPEAKER_02]: Their joy is providing a play in the guitar at bedside or singing vocalists.
- 6:53[SPEAKER_02]: You know, so we all have something to contribute to society, right, to give us purpose and meaning.
- 7:01[SPEAKER_02]: And that helps us have a fulfilling life.
- 7:04[SPEAKER_02]: In my journey,
- 7:11[SPEAKER_02]: and after three years, I realized, whoa, okay, I can't do everything, I can't spread myself then.
- 7:20[SPEAKER_02]: And I'm not good, these certain things are triggering me and,
- 7:29[SPEAKER_02]: I can't, I can't lift people and be this caregiver because I'm so petite, right?
- 7:35[SPEAKER_02]: So I learned through triumphant trial and error that, okay, I'm going to need to let go of some of these things and drop some things off with my list of services.
- 7:46[SPEAKER_02]: But we're resourceful, so I found people that could fill in those gaps for me.
- 7:51[SPEAKER_02]: So I have a spreadsheet of
- 7:54[SPEAKER_02]: caregivers and musicians and the stuff that I'm choosing not to spend my time in because it's not serving my higher purpose either.
- 8:04[SPEAKER_02]: So I've managed to be resourceful with that and letting go admitting to myself, okay, I'm not a superhero.
- 8:13[SPEAKER_02]: I need help too.
- 8:14[SPEAKER_02]: And hospice is great help.
- 8:18[SPEAKER_02]: When we get called hospice hasn't been in place
- 8:22[SPEAKER_02]: most of the time because people are afraid of hospice.
- 8:25[SPEAKER_02]: That word is so triggering.
- 8:27[SPEAKER_02]: They feel that hospice.
- 8:28[SPEAKER_02]: You call hospice when you've got two weeks or days.
- 8:33[SPEAKER_02]: But I will highly encourage families.
- 8:36[SPEAKER_02]: We're like, okay, I can help you, but I too need help.
- 8:39[SPEAKER_02]: And what's your budget?
- 8:41[SPEAKER_02]: By the time we get call, they've already exhausted a lot of their income
- 8:51[SPEAKER_02]: So we're very aware of boundaries.
- 8:53[SPEAKER_02]: We were a good debt dealer.
- 8:55[SPEAKER_02]: We'll respect other boundaries and know what they can take on and what they need to like old.
- 9:00[SPEAKER_01]: Your approach is influenced by the communal death traditions you witness growing up in Mexico.
- 9:06[SPEAKER_01]: What do those experiences teach you about dignity, family, and the importance of not allowing someone to face death alone?
- 9:13[SPEAKER_02]: Well, you know, there is such great benefit that I've learned by having the privilege to experience Mexican culture and comparing it to American culture.
- 9:26[SPEAKER_02]: In the summers, my parents would send my brother and I during the summer to go be with my mom's family.
- 9:34[SPEAKER_02]: There, you know, they were factory workers, blue collar workers, they couldn't afford camps, nannies.
- 9:39[SPEAKER_02]: So we would go, and that's where I first witnessed, you know, at the age of four, my grandmother, taking me to other households when someone would die.
- 9:50[SPEAKER_02]: But to this day, there is an affuneral home in that town.
- 9:53[SPEAKER_02]: It's no longer a village, it has grown, but a lot of rural Mexico, they don't have uniforms.
- 10:00[SPEAKER_02]: People die at home.
- 10:04[SPEAKER_02]: space, you see the community.
- 10:06[SPEAKER_02]: come together.
- 10:07[SPEAKER_02]: Everyone knows what they're good at.
- 10:10[SPEAKER_02]: You have the person who's the carpenter who builds, you know, makes the caskets.
- 10:14[SPEAKER_02]: You have the person who has a bakery, they gather the pastries, right?
- 10:20[SPEAKER_02]: The person who goes and gets the coffee or collects the rosaries.
- 10:24[SPEAKER_02]: And with an hours, you see the community come together while my grandmother would help the family prepare, wash, prepare the
- 10:34[SPEAKER_02]: get it dressed and then bring the body to a communal space within the home, whether it was the courtyard or the living room.
- 10:42[SPEAKER_02]: And then with an hours, everyone neighbors, everyone that knew this person or this family come for support.
- 10:50[SPEAKER_02]: All ages, children, elders, and in community start breathing together, start celebrating the life through grief, through ceremony, ceremony
- 11:04[SPEAKER_02]: help people journey this the the unknown to bring a practice where you're all there within the same spirit but also helping this soul journey into the afterlife.
- 11:20[SPEAKER_02]: right through prayer, through candles and vigils.
- 11:23[SPEAKER_02]: And then the next day, you go and have a formal ceremony at the church.
- 11:28[SPEAKER_02]: And then from there, you follow the carriage that carries the body outside of the village to the cemetery that's at the bottom of the hillside.
- 11:37[SPEAKER_02]: And then there's this burial.
- 11:39[SPEAKER_02]: But it doesn't end there.
- 11:41[SPEAKER_02]: In Mexico, they have a practice called no binario, no bed, no deal that's Latin for nine.
- 11:48[SPEAKER_02]: nine days consecutive days after burial, those same individual still gather after work in that person's home.
- 11:58[SPEAKER_02]: And it's a potluck.
- 11:59[SPEAKER_02]: And before you start eating, again, they go through the rosary or they go through prayer
- 12:07[SPEAKER_02]: knowing that they within them, that spiritual connection is guiding that loved one into the afterlife, into the light, whatever their belief system is.
- 12:19[SPEAKER_02]: And then you start eating together, you feed each other, you know, you're grieving, but you're sharing stories, you're laughing, you're crying, all those feelings, but it's an outlet and you're not doing it alone.
- 12:36[SPEAKER_02]: You come here, but that's nine consecutive days.
- 12:38[SPEAKER_02]: You come here, you're not at someone's home.
- 12:43[SPEAKER_02]: You're in a building maybe you've never been to a funeral home.
- 12:46[SPEAKER_02]: Florescent lights, you have a limited set time.
- 12:51[SPEAKER_02]: It's for two or three days, and then everyone go back to work, go back to school, carry on, go on with life.
- 12:58[SPEAKER_02]: But,
- 12:58[SPEAKER_02]: For those immediately affected, those who are grieving, those close to that loved one that passed, timestamp still, it's like you're in this limbo phase where the world's still going on, but you can't move on.
- 13:14[SPEAKER_02]: And you still need that outlet.
- 13:17[SPEAKER_02]: So community seeing that also seeing that the benefits
- 13:26[SPEAKER_02]: multi-generational household and cohesive community.
- 13:33[SPEAKER_02]: Really helps answer the, why am I here?
- 13:36[SPEAKER_02]: What's my purpose?
- 13:38[SPEAKER_02]: Everyone has something beneficial to contribute to the human experience, whether you're young or you're old.
- 13:46[SPEAKER_02]: Here, when I'm helping elders,
- 13:48[SPEAKER_02]: And everyone's dispersed and it's so isolating and people are like, oh, well, I'm sorry.
- 13:54[SPEAKER_02]: You know, this is happening.
- 13:56[SPEAKER_02]: Call me if you need anything.
- 13:57[SPEAKER_02]: The worst thing you can say.
- 13:58[SPEAKER_02]: And I should speak louder than words, but elders here, there's just our culture makes elders feel like you're expired.
- 14:08[SPEAKER_02]: You have nothing more to contribute.
- 14:11[SPEAKER_02]: You're on your way out.
- 14:14[SPEAKER_02]: And that adds that's.
- 14:17[SPEAKER_02]: I feel that when you're in a community, a household that supports you, that gives you purpose and meaning you live a longer life and you live a more fulfilling life.
- 14:31[SPEAKER_02]: It's not isolated.
- 14:32[SPEAKER_02]: There's so much research that shows those who die alone, die a lot sooner, they don't live long enough.
- 14:40[SPEAKER_02]: my own experience from helping people die at home versus a hospital or hospice.
- 14:47[SPEAKER_02]: Those people live a little bit longer and happier because they're in their own home with their own food that they grew up with and visits and company.
- 15:00[SPEAKER_02]: It's a better death.
- 15:02[SPEAKER_01]: Yeah, thank you for sharing that's beautiful.
- 15:04[SPEAKER_01]: You know, family members may disagree with one another or with the wishes of the person who's dying.
- 15:11[SPEAKER_01]: How do you help people slow down, listen, and keep the individuals voice of the center of the decisions being made?
- 15:18[SPEAKER_02]: Um, I do run into that a lot.
- 15:20[SPEAKER_02]: I recently, I'm with an individual right now, who's mother is very triggering or was it's a little bit better now, but as she as she was venting to me, um, about how frustrated as much as she wants her mom there and she loves her mom, um, all her bombardment of questions and drilling.
- 15:42[SPEAKER_02]: Well, have you looked into this?
- 15:43[SPEAKER_02]: Have you tried that, did you call it has been so triggering because it's not only, she feels it's not supporting her and giving her permission to leave on her own terms.
- 15:54[SPEAKER_02]: But now she has to worry about this person's comfort with their death, right?
- 16:01[SPEAKER_02]: So those experiences, if I can, I prefer to meet with that person along.
- 16:10[SPEAKER_02]: And speak with them alone, which I did have the opportunity.
- 16:13[SPEAKER_02]: I went and visited her mother.
- 16:15[SPEAKER_02]: It spent two hours.
- 16:16[SPEAKER_02]: My name is at her at home.
- 16:18[SPEAKER_02]: So she wouldn't be so afraid of me.
- 16:21[SPEAKER_02]: She saw death duels as, well, this person is just going to influence you to go ahead and give up and die.
- 16:29[SPEAKER_02]: So I went there and we, you know, hi, this is me.
- 16:35[SPEAKER_02]: This is how I came to do this work.
- 16:39[SPEAKER_02]: ask to what are you afraid of?
- 16:42[SPEAKER_02]: So all of that, what looks like concern, what is concern, it triggers the person who's dying, it just comes from fear.
- 16:52[SPEAKER_02]: when someone is not agreeing with another person, that's fear, whether it's through death, marriage relationships, it's just fear.
- 17:00[SPEAKER_02]: So my intention is, okay, let me address the fear for that person to get them on a level plane that they can be open to other possibilities.
- 17:11[SPEAKER_02]: And that's what I did.
- 17:12[SPEAKER_02]: And so once I addressed her fear, then I saw where the miscommunication and misunderstanding was.
- 17:22[SPEAKER_02]: You know, instead of choosing these words, maybe next time when you have these questions, first, call me, call me, I'm happy to answer, but maybe approach it this way or say it in this way, so also acknowledging their fear, acknowledging their concern, but mainly what is their fear, because that's what's driving it on.
- 17:45[SPEAKER_01]: Yeah, that makes sense and people often avoid end of life conversations because they believe talking about that is frightening negative or somehow giving up what does that assumption cost individuals and their families want to crisis arrives?
- 18:02[SPEAKER_01]: It causes trauma really.
- 18:04[SPEAKER_02]: So when I feel that I'm not that I'm trying to get to someone's fear.
- 18:11[SPEAKER_02]: And they don't want to.
- 18:14[SPEAKER_02]: um address their own mortality or their making excuses or using other things to justify that fear but i can tell deep down okay this is really their own mortality they're having issues with then i switch the conversation from after they've addressed their fears but i feel that they haven't really been truthful and honest of their true fears then i ask them you know when it's your time
- 18:44[SPEAKER_02]: How would you, what are your wishes?
- 18:46[SPEAKER_02]: I start asking, well, what are your wishes when your time comes and many haven't even thought about it and don't want to think about it?
- 18:55[SPEAKER_02]: Well, let's just imagine you're at the end of your human experience, your life journey.
- 19:02[SPEAKER_02]: What do you want to die at home?
- 19:03[SPEAKER_02]: You know, what does that look like for you?
- 19:05[SPEAKER_02]: And then once they do express some wishes or all their wishes, then I ask, what?
- 19:13[SPEAKER_02]: is someone took those away from you.
- 19:16[SPEAKER_02]: What if you didn't have a right to choose that?
- 19:21[SPEAKER_02]: What if someone took away your autonomy?
- 19:24[SPEAKER_02]: That does away with your dignity, no one's respecting your voice, your wishes.
- 19:31[SPEAKER_02]: So, there you create empathy.
- 19:34[SPEAKER_02]: You help someone bring empathy into their way of thinking.
- 19:41[SPEAKER_02]: And that seems to 99% of the time I have an epiphany and be like, okay, I see what I'm doing.
- 19:51[SPEAKER_02]: And I see how this is, I need to, yeah, they, they see the light, right?
- 19:57[SPEAKER_02]: And it helps.
- 19:59[SPEAKER_02]: It helps because then they're not creating trauma for the person who's dying because when,
- 20:05[SPEAKER_02]: There's so much fear or they don't realize how their fear is creating not only trauma for their loved one but for themselves they're just feeding into this fear and fear is trauma.
- 20:20[SPEAKER_02]: So when they don't disagree and there's a lot of disagreement, this is causing trauma.
- 20:25[SPEAKER_01]: Yeah, that makes sense.
- 20:27[SPEAKER_01]: For someone who's listening, who is healthy, and not currently facing a crisis, what is one specific conversation or planning step?
- 20:36[SPEAKER_01]: They can take now to protect their autonomy, reduce uncertainty for their loved ones and live more intentionally.
- 20:44[SPEAKER_02]: So many times, Greg, when I've been called to help put things in order and they're not near
- 20:54[SPEAKER_02]: many times it's because they experienced trauma from a recent funeral or death, where there wasn't agreement and they're like, oh, I don't want to go through that really.
- 21:10[SPEAKER_02]: Yeah, that was traumatizing and it broke the family of part or now there's distance.
- 21:18[SPEAKER_02]: So that's when they do call.
- 21:25[SPEAKER_02]: And in that packet, one of the most powerful forms is one that I downloaded from the compassion and choices website, they have a whole packet and that work sheet, which is last wishes.
- 21:40[SPEAKER_02]: Well, I don't have it in front of me, but I'll provide you the link.
- 21:46[SPEAKER_02]: And it asks all those questions that's not overwhelming.
- 21:50[SPEAKER_02]: It's a two page front and back.
- 21:53[SPEAKER_02]: Basic questions, how do you want to be treated at the end of life?
- 21:56[SPEAKER_02]: Who do you want there?
- 21:58[SPEAKER_02]: Who do you not want there?
- 22:00[SPEAKER_02]: What foods do you want?
- 22:02[SPEAKER_02]: What kind of environment do you want to be in?
- 22:07[SPEAKER_02]: And it gets specific.
- 22:08[SPEAKER_02]: You want to be bathed every day.
- 22:10[SPEAKER_02]: You want to have, you know, your hair combed every day.
- 22:13[SPEAKER_02]: I mean, just basic questions and they're good sets of questions.
- 22:17[SPEAKER_02]: And I always tell individuals, you don't have to drill through this questionnaire right now.
- 22:24[SPEAKER_02]: Two questions a month or, you know, just once in a while, revisit it and
- 22:29[SPEAKER_02]: If you have a long time till it's your time, revisit that questionnaire every year, two years because those feelings will change, you know.
- 22:40[SPEAKER_01]: That's a wonderful Sandy.
- 22:42[SPEAKER_01]: Thank you.
- 22:43[SPEAKER_01]: Before we close, what is the best way for listeners to learn more about you and connect with you?
- 22:49[SPEAKER_02]: You can visit, first I would encourage you to start with the
- 22:55[SPEAKER_02]: we have a directory with other ductulas and the areas that they surface and also that they surface and also what their niche is.
- 23:05[SPEAKER_02]: Some do a list just assist with the peck even pet loss.
- 23:13[SPEAKER_02]: Others will focus more on miscarriages or still birds in that sector.
- 23:21[SPEAKER_02]: Others just putting things in order.
- 23:22[SPEAKER_02]: Others just
- 23:24[SPEAKER_02]: organizing punerals and memorials.
- 23:27[SPEAKER_02]: So there's a directory that everyone's profile and then there's also a resource page and other events within Chicago land area.
- 23:37[SPEAKER_02]: that we hold and other death dwellers hold around the Chicago land areas such as death cafes, death picnics, spaces where we are trying to did mystify death and take the fear out of talking about it.
- 23:53[SPEAKER_02]: So people can address so
- 23:59[SPEAKER_02]: And then on the directory page, you'll find me and then a link to my website, sheparduhome.com.
- 24:06[SPEAKER_02]: Um, so that would be a great starting point.
- 24:09[SPEAKER_01]: Great.
- 24:10[SPEAKER_01]: Thank you.
- 24:10[SPEAKER_01]: And for a listeners that are outside of the Chicago area, is there a national place that they can look or do here?
- 24:16[SPEAKER_02]: There are yes.
- 24:19[SPEAKER_02]: So there are many and these organizations also offer training programs for anyone who wants to
- 24:27[SPEAKER_02]: be a death dualist.
- 24:28[SPEAKER_02]: There's that international association.
- 24:30[SPEAKER_02]: Um, uh, a, uh, anelda.
- 24:34[SPEAKER_02]: There's also need a, is another.
- 24:37[SPEAKER_02]: And then the University of Vermont offers a great death dual program as well.
- 24:43[SPEAKER_02]: And they have a directory.
- 24:44[SPEAKER_02]: So these organizations, there's many.
- 24:47[SPEAKER_02]: Once you start Googling, those top three will come up or top two.
- 24:52[SPEAKER_02]: and then others within your own state will come up and they all pretty much have a directory of that do as that service that state.
- 25:00[SPEAKER_01]: Great.
- 25:01[SPEAKER_01]: Thank you, Sandy.
- 25:02[SPEAKER_01]: We'll include that information in the show notes.
- 25:05[SPEAKER_01]: Sandy, thank you for helping us approach a subject that many people would prefer to avoid.
- 25:10[SPEAKER_01]: Your work reminds us that linseaning carefully,
- 25:14[SPEAKER_01]: honoring another person's choices and having difficult conversations before a crisis are meaningful forms of positive and responsible influence.
- 25:25[SPEAKER_01]: It also shows us the contemplating the end of life can bring greater clarity to how we choose to live today.
- 25:31[SPEAKER_01]: Thank you for joining us on daily influence.
- 25:35[SPEAKER_01]: Thank you, Greg.
- 25:36[SPEAKER_01]: Thank you for having me.
- 25:37[SPEAKER_01]: Thank you for listening to Daily Influence.
- 25:39[SPEAKER_01]: Take one key insight from today's conversation and intentionally put it into practice in your life so you can have a positive responsible influence on those around you.
- 25:48[SPEAKER_01]: Remember, every interaction is an opportunity to influence and the influence you create is always your choice.
- 25:56[SPEAKER_01]: Until next time, have a great day.