A Question of Ethics: Hmong Bioethics for the Pediatric Clinician

Dr. Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts, where the complex is our every day. Each episode, we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge, and perhaps change, how you care for kids.

Welcome to Talking Pediatrics. I’m your host Dr. Kade Goepferd. Today’s segment, A Question of Ethics, recognizes that pediatric clinicians do ethics every day. And our guest host, Dr. Ian Wolfe, director of ethics, offers helpful guidance for pediatric clinicians navigating those everyday ethical issues.

Dr. Ian Wolfe: Welcome to A Question of Ethics. I’m your host, Dr. Ian Wolfe, director of ethics here at Children’s Minnesota. We think of interactions between parents and clinicians as value neutral, but each person comes to the relationship guided by their own way of applying value to facts in the world, and understanding how different people come to these determinations of values is important and ethically relevant to decision-making that goes on in the medical space. Today, on a question of Ethics, we’re talking to Billy Lor who is a cultural consultant and expert Hmong shaman. Thanks for being here, Billy.

Billy Lor: Yes, thanks for having me here. It’s an honor.

Dr. Ian Wolfe: So I really wanted to talk to someone from the Hmong community to learn more about what things from Hmong culture or spirituality play into how parents and even adolescents might view medical decisions.

Billy Lor: First off, let’s talk about the cultural aspect. Hmong families are very family woven and many households are multi-generational. So let’s say in pediatrics, when parents are making medical decisions for their children, most times they’re going to consult with whether that be family elders, the grandparents of the household, the many grandparents that we may have, great aunts, great uncles, we just say grandparents, and they’ll even consult with other cousins, siblings as well before making a decision. Other things when it comes to spiritual, now know that Hmong spiritual practices is very holistic-driven, whereas we may look at western medicine as more of physical pain or symptoms. Well for us we look at it spiritually and creating balance, and knowing that the soul is very closely connected with the body. And so a lot of decisions that are made talking about benefits and burdens, a lot of decisions that are made, we want to make sure that it’s not going to cause us spiritual burden or spiritual illness in the long run. And so everything is very connected, and so because spiritually the body and the soul is so connected, many parents will consult with elders who may have spiritual knowledge or experience with it before making any decisions.

Dr. Ian Wolfe: That’s really interesting. I don’t think that much western medicine really plays into the spiritual aspect. Of course we have our spiritual care chaplains, but it seems like, at least from the western medical view, we certainly wouldn’t consider the impacts that medical intervention would have on spirituality where it sounds like in Hmong spirituality it’s significant importance. And going to the cultural thing that you mentioned, I’m thinking back to the conferences and the meetings I’ve had with Hmong families over the years, and it’s very rarely less than four peoples.

There is definitely that dynamic of it’s a family decision. So when you’re thinking of medical interventions and often on this podcast and in my practice, we talk about the value of medical interventions, and I think we often apply value to them based on what we think from the medical perspective. And I try to remind clinicians that medical interventions have really no value on their own. Rather the value comes from the potential benefits that you can obtain from those interventions balanced with the burdens.

And it sounds like in Hmong culture or spirituality, there’s even another angle which is, how does that impact the soul? So when thinking about a parent faced with a medical decision, how can a clinician engage in a conversation with a parent about that?

Billy Lor: One thing that is going to be important about this is cultural humility is very important, in any practice we do and knowing that when you’re working with patients who may have a different cultural understanding, so for example, I encourage practitioners to talk to parents using more open-ended questions instead of just yes or no questions. It’s because a lot of times parents are going to have to take that information back and process that and consult with their family members. But not only that, in the Hmong culture saying yes or nodding is a form of being polite. And so let’s say I may not necessarily agree with what’s happening or I may not necessarily even understand what the practitioner is talking about or what is this procedure or intervention going to be, but I’m probably going to nod and say yes anyways. And so it’s good to have more open-ended questions because we have clogged channels of communication because when it comes to different cultures, I may be saying yes or even nodding, but that doesn’t mean I necessarily agree.

So I think that’s also important as well. I think one thing that is very important is, this takes time, but explaining what the medical intervention is going to be and what’s going to happen because for example, let’s use amputation. And so in Hmong beliefs, we believe that every part of the body has a different soul, whether that’s I have an arm soul, a leg soul, a liver soul, a heart soul, et cetera. Using amputation as example, when we, let’s say we amputate an arm, this can be viewed as actually not just amputating a part of the body but cutting a part of their soul for them. And so now this leaves them unbalanced and we may even see this as future illness coming down the road because how we view illness is that, illness isn’t just biological for us, illness can be part spiritual and spiritual.

Maybe it’s a spiritual issue that is we could say manifesting biologically. And so we like to look at all of that and we believe that. And so because we believe that not all illness is just biological, then even though we may not necessarily hesitate… We may not necessarily deny the medical intervention, but we want to also work alongside of it. Here’s an example. It was a couple of years ago, I was working with this one family and their child had an infection on their leg and I was asked to come in and do some blessings with that. And so there was a second procedure that needed to be done because the infection had come back and the family was hesitant because they didn’t know how was this going to affect the soul of that child, and knowing that, okay, for example, if this procedure happens and they’re getting into the flesh, is that damaging the soul, and if that does damage the soul, in the long run, we’re going to have to perform ceremonies or we’re going to have to perform blessings, however you want to define it, for that child, and that’s going to be costly.

These ceremonies are not cheap, so these are even more things they’re adding on. And so because of that we like to know what is happening in this intervention, so we understand that and can have a spiritual healer that is also working alongside, and a spiritual healer may not be in the hospital, they could be performing at home, but then we’re in a way balancing or complementing the intervention that’s going on. So once it complements, it saves us, one, time in the future so we don’t have to perform ceremonies. And so we’re addressing the issue right away. In my experience, families can be hesitant, but they won’t necessarily say, “No, we’re not going to do this.” But it’s more of, “I want to understand this so I can make sure that spiritually I’m also supporting that and it’s end.” And so everything is holistic and balanced.

Dr. Ian Wolfe: It’s so interesting. I think that really shows a good takeaway to ask about that in order to get ahead of not only wanting to treat them physically but then ensuring that you’re also providing that space for their spiritual treatment. It makes me think back on all the meetings I’ve had with Hmong families and I wish I had asked if they would like one of their spiritual advisors to come in just so we could hear that perspective. Oh, that’s really interesting.

Billy Lor: That part is always really important just because going back to just mind, body and soul, many times… I’ll even say maybe this is placebo sometimes, but my experience with working with Hmong patients in hospitals, especially with children, maybe medical intervention is done, maybe it’s surgery or some type of procedure. Having practically, and even just having their spiritual advisor, their spiritual healer, or someone who plays a culturally significant role in their community, just being present, whether that’s in the decision-making or post-intervention, it really does help the patient, one, see that intervention as beneficial, but also helps them heal faster too in their recovery.

My experience, so many times I’ve worked with children in the past where their recovery was just not as fast or it was slower and was difficult on the family. And sometimes me coming in and doing, whether we say it’s a cultural prayer or a blessing in the community, we like to say kukom, which is spiritual healing. And even just performing that, and at times in my experience just being present allows the patient to be more open-minded because they see us working as a team, they don’t see us come and work as a team, and complementing each other. And then even the belief of knowing, my soul is secure. Maybe this thought helps them even heal. And so I think that it comes to play not just spiritually, but I think being mindful and knowing that their mental health and how they perceive healing also comes into play.

Dr. Ian Wolfe: Early on in my career, I was fortunate to actually have a young Hmong patient where we were doing dressing changes and the shaman would come in and do his stuff at the same time we were doing our stuff, and it was really wonderful experience and interesting and obviously the benefits from the spiritual healing for him were there too.

But as you say, I think that the benefit from just showing us as a united team, we are here to help support this was a huge impact. Some things that come up in thinking about trying to have cultural humility here. We learn certain things about cultures and of course not every culture is a monolith and people have difference of beliefs, especially reading books like The Spirit Catches Me and those books that have taught some of us in ethics courses and health courses, a little glimpse of Hmong culture and spirituality, it’s always good to check some of those with every patient, right? Because we always want to ask the patient what their beliefs are. One thing is about implanted devices, is there the same type of issue or concern around spirit and soul when we put devices in the body?

Billy Lor: Yeah. That can have some impact. Now first off, I think in the Hmong community, everyone’s level of belief can be different. And so I’ll say maybe folks in my grandparents’ generation, implants is something they may frown upon or outright refuse, whereas a younger generation, like me or my parents’ generation will be more understanding or open-minded to it. Every patient comes in with a different level of belief, but to just define it, not that it causes issue, but it goes back to the topic of balance. And so if we’re adding something back into the body, whether it’s an implant, we want to make sure that it’s not disrupting other parts of the soul, because the soul is so woven with the body that if it does disrupt or causes a soul to move, or we like to say [inaudible 00:12:30], which means to fall, to fall out of your body or to exit your body, this can cause issues throughout the rest of the body. And so we want to make sure that that implant has balance.

Let’s say that getting an implant is going to be a procedure we’re going to do, many Hmong patients may need time to either perform a ceremony before, do a spiritual blessing or healing to strengthen the body or even to let the soul know that this is going to be an implant that’s coming in the body so the soul can actually be ready to accept that or the soul can adapt to that. And so that’s going to be important as well. I think one thing that I want to add in here is, when it comes to topic of death, in Hmong belief it is, we don’t want anything that’s not a part of the body in the body of death. So metal, plastics, even during burials, right? We don’t bury anything in the casket, like clothing, if there’s buttons, we’ll cut all the buttons off. We want to make sure it’s only cloth or cotton and no plastic, no metals in the casket because we believe that anything that is metal or plastic that may go with the body, we believe in reincarnation, so it’ll cause illness in the next life for that individual.

And so maybe someone who is getting an implant but they’re vulnerable or in a way they could be close to death, we may be more hesitant because we don’t know how that’s going to play out and we don’t want it to affect the soul. And it doesn’t just affect the soul of the individual. We believe that if that person maybe has metal in their body or plastic or some sort of implant, this can actually come back and affect the family. Let’s say they pass away, that the soul because it’s carrying something that it didn’t bring into this world, it can come back and cause illness to the family. So sometimes implants can be scary for individuals, and in the end you don’t want that person to leave with the implant. And so going back to the level of belief, some folks will, they don’t think that this is any issue, they’re going to be okay with it.

But for example, I’ll use my own life experience. My grandfather, at his end of life, he had implants in, and we knew that he was close to the end of life and he had expressed that he wanted those implants to be taken out. I believe it was, I’m not sure about the terminology, but it was like a metal brace in his arm because he had broken his arm, there was something in there, and eventually it was going to be taken out or something, and he had an infection. So then this caused his end of life, but he kind of knew it was kind of close. He was like, “Make sure that this is taken out because I don’t want to bring this in my next life, or I want to make sure I can reincarnate.” And so it’s a lot of those factors of, how long is the implant going to be in?

Is this a light thing, is there an option to take this out? Let’s say they have this implant for the rest of their life, 50 years down the road, are we going to take this out? So those are all really important questions and it’s important that when we are going to have implants, that we have a timeline, we have where is it going to be? Because depending where it’s at, it may affect that part of the soul, like I said, heart soul, liver soul, arms soul, legs. So it’s all very different. And so having very open conversations and being very descriptive and detailed is going to help ease the family into having the implant, or allows the family to have time to have spiritual healing before they have to implant or even during and post.

Dr. Ian Wolfe: I really like this ethic of balance. That’s a really interesting concept to me and something that, as somebody who loves balance, and it’s not uncommon in pediatrics because we’re constantly balancing benefits and burdens, meaning all interventions have some sort of burden that we try to balance out with the benefit. And it brings up that really interesting idea of looking then for these Hmong patients who follow that ethic of balance for the clinician to really consider that not just for themselves, but to then help their patients understand that better, to get healthier, better, not only physically but spiritually. And then thinking about this idea of balance also within the treatments, does that apply with medications too? Not just moving away from implanted devices or temporary, or what have you, I assume, but don’t want to, that taking medications also brings up this sort of consideration of balance?

Billy Lor: When it comes to medication, in just my experience, community members are much more open to it, but then the law of balance or the theory of it still comes into play.

So medications that may affect someone mentally or make someone more woozy, this can maybe impact the connection of spirit and body. Let’s say I’m a shaman, so let’s say I’m coming into the situation, I’m going to perform a ceremony at home for a patient, but if they’re not mentally sound, maybe due to a medication or it’s a little bit more drowsy or it’s harder for them to get around, this can also cause negative impacts on the mind and body and soul. And so medications, we don’t frown upon that as much, but then balance still comes into play of how is this affecting the body? Is this medication helping the body heal? And if it does help the body heal, what’s the side effects of it, right? For example, this may come into mental health more, but let’s say someone who’s on anti-depressants, right? And this makes them feel gray or more gray, because they’re gray and they’re not feeling their emotions as much. This could be a disconnection from the soul causing the soul to disconnect from the body. And then because the soul disconnects from the body, the body may manifest biological health issues, needing a shaman to come in, retrieving the soul, bringing balance. And so some medications can cause that imbalance. I think Hmong people are really open to it again, and we know how that works. Explaining symptoms or explaining side effects is going to be very important because emotions is a strong indicator of spiritual well-being.

Dr. Ian Wolfe: You mentioned spirits a lot and I think I can surmise from what you’re saying that there’s a lot of considerations into spirit. And I’ve come across a few, not so much the patients, but the patient’s parents having that worry about spirit, not just in end of life, but spirits within the hospital rooms. And I don’t think it’s just Hmong families that I’ve heard this from. If you’ve talked to some night nurses in ICUs, they often also bring some of those up. But it brings to mind this, we try to provide care for the patient and for the family, and those two are interconnected of course. Is there anything we can do for parents who might be in a room and losing sleep or what have you because they tell us that there’s spirits in here who are, I don’t know what the right word is, trapped or are there?

Billy Lor: The bulk of my work coming into hospitals is actually addressing this issue or helping the family become comfortable, or the patient themselves. So some families, and I think one thing that we think or assume is that our medical providers don’t see our practice as medicine. And so many parents will try to bring, whether it’s charms, they may do cleansings and cleansings doesn’t necessarily incorporate burning materials. Cleansings may just be coming into a room, taking a branch and just sweeping the air, sweeping out energy, negative energy or spirits.

This is the bulk of the work that I do when I come to hospitals. I get requested a lot, because parents may feel intimidated to maybe do cleansings themselves or they may feel as though the hospital may perceive what they’re doing as something bad. And this comes to more of social issues that the demonization of our cultural practices and looking that as barbaric, you could say. And so when I come in, I think one thing that really helps is knowing that, for practitioners, knowing that patients, whenever they’re ill, we could say they’re also spiritually vulnerable, which may make them more susceptible to spirits, whether it’s good or bad, spirits in the room, it may attract spirits because they’re susceptible and being ill, it can make someone much more spiritually in tuned or sensitive.

And so we believe that this may bring spirits around and in healing spaces or facilities like hospitals, there could be a lot of passing. Not only that, many spirits could be attracted, and so to make the space or the environment much more comfortable for parents to the patient is even just offering or allowing, “Hey, if you want to have a spiritual practitioner to come in, just know that we’re open to it, or if you need to do anything to make yourself comfortable, whether it’s bringing in a charm or…” I have charms for example, or strings and just letting them know that we’re okay with you bringing that in.

We’re okay with you coming in and tying the string, or you need a spiritual healer to come in and do a blessing, we’re open to that. Obviously they’re going to invite the spiritual healer, they’ll know which one they want, but just leaving the door open and so they don’t have to feel like, “Oh, I’m so uncomfortable, but I don’t know if the hospital will allow it.” Just demolishing that fear right away makes them feel comfortable they can bring something in. And know that many of these patients or the parents of the child, many of them actually already know how to do cleansing.

They’ve been taught by elders what to do in a situation where they may be interacting with spirit. And so just saying, “Hey, we’re okay with you doing that. If you need to do a prayer, if you need to do a blessing or bring someone in, that’s completely okay with us.” I think that already alleviates that and helps parents already establish that system, and they can already [inaudible 00:22:20].

Dr. Ian Wolfe: That’s really good advice. I really like how you phrase it too, because it doesn’t necessarily assume that because they’re Hmong or we’ve identified them as Hmong, that they have it, but it’s just letting them know that it is okay if it’s something you want to do. And then as you say, it sort of brings that level of potential discomfort because they don’t want to be seen the way that we might view them or they might think we view them, gives enough of that permission, that “Hey, we want to make this space and we want to care for you too, because caring for you improves a healthier child.”

Billy Lor: …discrimination and knowing that there’s a history of discrimination in these, it still comes into play. And so again, breaking that barrier and just communicating with them, do what you need to do, I’m bringing in shaman or do whatever healing practices you do to feel comfortable, I already have trust with you knowing you don’t discriminate and makes me more comfortable also, and it just allows me to share more with you. I’m feeling this, I’m feeling that, and I think it builds trust at the end of the day.

Dr. Ian Wolfe: A lot of times, non-Hmong people, western folks, Christian or whatever other religions, they don’t think because we live in a sort of largely western culture, we don’t think about the ways that the beliefs of our ancestors really impact the way that we think, which is so interesting for me because over the years, I think I’ve seen newer generations of people who have integrated here who have the same sort of thing, where I’ve asked some younger Hmong folks and folks of other backgrounds, is there a spiritual impact to your decisions? And they often say no, but I see some of the same influences reflected in their behavior. So just to say that it can be good to just know where these come from, even if they’re not seen by the individual as coming from this spiritual place.

I think that understanding is really impactful. And I think just to reflect on our own sense of things, that we have many beliefs and things that are impacted by spiritual beliefs that go back quite a ways, that we maybe don’t even recognize as spiritual beliefs. I think of the saying, “Bless you,” when somebody sneezes. I talk to many people who aren’t religious and that continue to say that word that aren’t Christian or things like that.

Billy Lor: Even like goodbye, God be with you. And so much of it, although I’m a shaman, I would say I’m not as religious. But I will admit though that for a lot of Hmong folks who may not be as religious or spiritual, a lot of how we perceive the world or perceive reality, or even how we make actions and decisions have been influenced by generations of spiritual practices. And so going back to what you’re saying, it’s so important about even decisions we make, even if we’re not spiritual or religious, it’s unconscious because it’s a part of us already.

Dr. Ian Wolfe: And it also speaks to, if you ask that to a person and they say no, it may be the case that that isn’t, but it also may be the case that we always want to make sure that are they saying no because they’re fearful of some sort of discrimination or bias? I think that’s really the key of empathy and making those spaces feel safe enough for them to be allowed to share practices. And that’s not just with Hmong culture. I’ve talked to other faith backgrounds who don’t disclose it up front because of fear of discrimination, and clearly has impacted care, and that’s one big thing, is to build that trust to show that.

Well, Billy, this has been really fascinating and I think this is really important information to provide to clinicians working with Hmong patients. What are some takeaways, maybe review of what we talked about, to leave our audience with as they go forward and work with patients from your community?

Billy Lor: First off, let’s go back to just the law of balance for us, knowing that mind, body and soul, holistic perspective is balanced. Hmong people, we view the body along with the soul as an environment. And so if there’s any pollutants or for example, you take out a predator in an environment, the prey will overrun that. And so that’s how we look at the body. So just always making sure that there is balance, and that leads into how do we ensure that it’s having conversations instead of yes and no questions, right? Let’s say it’s medical intervention or any procedure, explaining what’s going to be done, where is it going to be done, maybe recovery, and all of that. Is it going to affect the bone or just tendons or wherever that is, right? Explaining that blood transfusions, it’s all very important, but what’s coming into the body, what’s affecting the body.

So view the body as an ecosystem and everything will play on each other. And so instead of just yes or no questions, explain that. I think another thing that is going to be really important is knowing whether it’s gestures, social cues, and how Hmong community is really family-driven, and so we have to make a big decision right away. A lot of times we may be saying yes out of respect because we do really respect our medical providers and we say yes or we nod, but it may not necessarily mean that we agree, and this may not be possible all the time, but giving time for families to consult with their own family, many families before a procedure even happens, this is probably very common, is they’ll perform a ceremony or some form of spiritual healing to brace the soul and the body going into the procedure. And so giving people time and knowing that if we have to make a decision on the spot, families compared to maybe other communities, we may need a little bit more time. So that’s going to be also really important. Third takeaway is creating a space for the family to have their spiritual practices be involved at the same time. Creating a space that is open, mindful, and allows them to incorporate what they may view as medicine in that environment.

So like what we talked about, if they’re feeling uncomfortable in the hospital, even just saying right away when you know their parents are staying, saying, “Hey, if you feel uncomfortable, if you need to bring anyone in, feel free to, if you need to bring anything in that makes the room feel much more cleansed or blessed, feel free to.” And then even creating an environment where they can invite family, cultural healers, and even just anyone who has a cultural significance to be in that space, it’ll help not just the parents but also the patient as well.

Dr. Ian Wolfe: That’s really great advice, and this has been just really fascinating and you can see the wheels in my head already moving on different ethical principles based in Hmong spirituality and culture, and thank you so much for spending your valuable time here with us today. I think this will really have significant impacts for both the community of patients that we serve, but also our clinicians in better serving our patients.

Billy Lor: Thanks for having me here.

Dr. Kade Goepferd: Thank you for listening to Talking Pediatrics. Come back next time for a new episode with our caregivers and experts in pediatric health. Our showrunner is Cora Nelson. Episodes are produced, engineered and edited by Jake Beaver. Our marketing representatives are Amie Juba and Krithika Devanathan. For information and additional episodes, check us out on your favorite podcast platform or go to childrensmn.org/talkingpediatrics.