Hospice Reputation Management and Prolonged Grief Disorder – a Deeper Look

[Yelena] (0:00–0:27)
Human beings live in the realm of meanings. We experience reality always through the meaning we give it, not in itself, but as something that we interpret. So if you are communicating and able to get to what is their interpretation of what occurred by taking it offline, but acknowledging it to begin with, you’re likely to get them to a place where they can really start processing this and potentially even decrease those like Google reviews.

[Tony] (0:30–2:07)
Welcome to another edition of Transcending Home Care, Transcend Strategy Group’s podcast on issues related to marketing, growth, reputation management, social media management, and it’s really in that last vein that we’ve got a great topic today for all of you. My name is Tony Kudner. I’m the chief strategy officer here at Transcend.

What we’re going to talk about today is an understanding of some of the motivators of people who maybe leave bad reviews for hospice online and what some of the reasons behind that are. We’ve got an amazing subject matter expert, an old good friend of mine from back in the day. I’m again tapping the Seasons Hospice AccentCare mafia to bring insights and perspectives.

And we’ve got someone from our team as well who has lived and breathed this herself in many ways. So, my guests today are Yelena Zatulovsky, who is the vice president of patient experience and the national internship director for AccentCare Hospice and an absolute expert on end-of-life ethics issues and the practice of bereavement care and grief and all the things that go along with that. And Jordan Dockery, who is our manager of digital strategy here at Transcend.

Yelena and Jordan, welcome to the pod. 

[Yelena] (2:05–2:06)
Thank you so much, Tony.

[Jordan] (2:07–2:12)
I’ve been here, I think, before, Tony, but I’m always excited to be on.

[Tony] (2:13–4:18)
Good, because you both are going to do most of the talking today. I’m just going to ask questions and then I want to facilitate people hearing from you. So we were planning for this podcast, Yelena, and honestly, one of the reasons was that a Transcend client came to us because they had a really complicated review situation where they had delivered great care to a patient and the medical power of attorney, the decision-maker for the patient, signed the patient up for hospice. They said, this is what the patient wants. We’re honoring their wishes. And the rest of the family was not on board.

And, ultimately, what happened was not only were they leaving one-star, very accusatory reviews on Google business, but they were so frustrated with what was happening to their loved one, that they were also updating the reviews every few days so that it was kind of rising to the top of the rankings. And there was true anger and ire here. But one of the things you taught me when we worked together and the phrase that stuck in my mind, and I think you’ll probably talk a little bit about the clinical definitions of this, because I probably play more fast and loose with it than I should.

But the phrase that kept ringing in my ears was complicated grief, was that this was not really about who was right and wrong or about what the patient legally, who the patient had decided was their decision-maker. This was a family who maybe wasn’t as aware of the journey that their loved one was on, manifesting as a bad review for the hospice. So, I guess, could you start by telling me if I’m right, that that’s a part of grief or complicated grief and what the hospice’s role is in that from a clinical perspective and maybe finally what someone in a marketing role should know about?

[Yelena] (4:20–9:22)
Yeah, I think it certainly could very well be an underlying factor, Tony, of this particular family’s experience or the multiple different family members’ experiences. So, taking just a step back to what complicated grief is, even like just the most basic, journeying through grief is really complex. It’s unpredictable, it’s nonlinear, and it never really follows a prescribed path.

Whatever relationship I have with a loved one, perhaps we both know somebody, right? It’s just at my relationship with that loved one. Your relationship with them is different.

And so, when we think about this idea of complicated grief from a clinical perspective, there’s sort of these healthier, normal patterns for grievers. And then there are these more prolonged, intense, debilitating factors. And from a clinical standpoint, complicated grief, which is actually known as prolonged grief disorder, is a diagnosis that is often made by a psychiatrist or qualified licensed mental health clinician when somebody is stuck.

And that’s like a non-clinical term. But when they get stuck, it’s progressing them from sort of moving through that whole grief experience. You know, they may be feeling like they’re disrupting their daily life.

They could be leading to these maladaptive coping strategies. This is a really good example of that. If the death was an over of a traumatic one or is anticipated to be, or in this case, the patient may still be alive, but it’s traumatic for them what’s happening.

Sometimes there’s sort of other signs. There’s this overlapping clinical depression, signs of PTSD, even though those have unique symptoms. And that kind of affects the person to really their inability to adapt to the loss or the impending loss over an extended period of time.

And they respond, right? That’s the thing they’re doing. When I think about what hospice teams can do from a clinician perspective, we often think about how do we help journey with patients and their chosen family members through the grief journey.

We tend to lean very heavily on William Worden’s Tasks of Mourning. And I actually think that his phases, which he outlines, which are not necessarily sequential, but they can be used for the communication pathway. And that does not require a clinician.

So, I’m going to tell you what those four are and then sort of see how you might be able to communicate through it. The first is just accepting the reality of the loss. This person is going to die or they have died and whatever has happened or whatever that construct is, is unchangeable now.

And you can start with even just that acknowledgement of how hard this experience is if we’re talking about a communication pathway. The second task is around allowing somebody to experience or process their pain or the emotions of the grief itself, right? And giving them a platform, in this case, it’s this Google platform, but bringing that offline and allowing them space to actually process those emotions is really important.

You’d probably want to do that with your bereavement team. Three is the idea of they’re having to adjust to this new reality where that world where in their world, this deceased is no longer going to be there. Their loved one is no longer going to be there. This parent is no longer going to be there. So even just making that statement around what that may look like as they move forward or what they might be reconciling can be important in communicating. And the last is thinking about finding an enduring connection.

It’s that legacy piece, right? It’s the memory of the deceased. It’s that they’re embarking on a meaningful life. It’s that they are really kind of thinking about how that person filled into the world. When you’re looking at it from a communication standpoint, a lot of this also lines up, right? This is really hard accepting that reality.

The emotions that they’re having, while they may be maladaptive in how they’re putting them forward, are still very real. So validating those emotions is important. And then acknowledging that this lost has other impending variables, they probably have some guilt underlying this because they probably would have controlled the situation differently if they were given that opportunity.

And then finding the way that they can connect to their loved one. So, thank you for bringing this forward to us. You can see how deeply important this loved one is to you.

I always just kind of think about this quote by Alfred Adler when I think about replicated grief or just grief in general. And he talks about like, the quote is, I’m paraphrasing, but like human beings live in the realm of meanings. We experience reality always through the meaning we give it, not in itself, but as something that we interpret.

So, if you are communicating and able to sort of get to what is their interpretation of what occurred by taking it offline, but acknowledging it to begin with, you’re likely to get them to a place where they can really start processing this and potentially even decrease those Google reviews.

[Tony] (9:24–9:57)
Well, that was a masterclass in six minutes. No, I think it was amazing. It was beautiful.

One more question, Yelena, sort of along the lines of what our amazing bereavement professionals do is, when you have a frustrated family, how do you help support them? And how do you deescalate when there is clear lack of alignment between family members or friends or anyone who’s part of the unit of care as it’s defined for that patient?

[Yelena] (9:59–12:55)
I always would say taking it offline is important. The first thing I always do is look for the commonalities between them, right? The relationships are hard. Our relationships with the patient or each person’s relationship with the patient is unique to each person, but there’s always a commonality. So, think about how do I break that tension first, right? And that’s dependent on what you say and how you show up, how you’re present.

I often start with something like, it’s really clear to me that all of you love your mom dearly. I really wish all of our patients were this lucky, right? So immediately, you’ve kind of acknowledged that everybody’s sitting in this space, no matter how they’re processing this, no matter how they’re approaching this, no matter how they’re communicating their experience, something in common to all of them right away.

And that something in common is how mom, in this case, right, how mom wants to be treated, how much mom is loved, how much we care about what the outcomes are for mom, what her good death would look like. So starting there is always a really helpful place. The second part that I then try to think about is leading from a place of humility, because it starts to feel like a partnership.

So, asking more questions than giving responses or answers, but helping them sort of untangle the complexity of the scenario. You’re likely to find many commonalities and many differences as you go down and you kind of dig deeper and deeper and deeper, but what ultimately they feel and experience is that it’s a collaborative process and it’s a conversation. Even if everybody in that room or in that space doesn’t have the right to make those decisions, you still can get to this place of, well, let’s find out what could have been important.

And sometimes it’s just other phrasing, right? If you’ve got everybody in the room, sometimes I’ll take everybody and step back for a minute. I remind them of what the role is in decision-making for mom, in that we’re her voice.

And then I sometimes will ask a question like, what do you think she would do? What do you think she would say right now if she could see her current circumstance? Right?

Again, kind of bringing them out of what they believe should happen and rather back into their role or their purpose, which is what does mom want? What would have mom chosen? What would be hard?

And you often start hearing things like, I’m afraid to do that. I’m not ready to lose her, right? That’s where the grief starts to sort of fade in, right?

I know that my sister is really trying to do what my mom wanted, but if we let her do that, it means that my mom dies sooner, or it means that she’s no longer here, or it means that whatever it is that they’re kind of holding on to disappears. It’s another loss. It’s compounded.

[Tony] (12:56–14:58)
Thank you. Incredibly helpful context, I think, for a lot of the folks who listen to this podcast who that may not be their day-to-day world. Is that part of operations at their agency?

And one other thing that I’d love to just pick your brain before we pivot a little bit over to Jordan on is the people who manage the social media accounts, who manage the online review accounts, almost at every hospice, they very likely were not part of the IDT, or a social worker, or a nurse, or someone who’s quite frankly involved in the day-to-day provision of care before they were the one who started responding to reviews. And I’ll try to be brief with this, but I remember when I was at AccentCare and Seasons, there were weekends where I was on call, for lack of a better term, for social media.

And there would be people who would just Facebook message our account and say, my mom is sundowning. And they’d say it with a lot more anger and frustration than that, quite frankly, where my mom needs to be changed. There’s no aide here. She needs cleaning. And if you don’t get somebody here in five minutes, I’m calling CBS4. And I have theater degrees, man. I can do what I can do over social media, but that was stressful for me. What are some ways that the people who are responsible for making sure that we respond to the people who are frustrated when they’re messaging us, or are leaving these bad reviews, can you give them any contextual help for self-care when they have to be the face of the organization and that may not be anywhere near their training or day-to-day life?

[Yelena] (14:59–16:58)
Yeah, in terms of practicing self-care, there’s a couple of things. I think they also start with a few acknowledgement things. First is, we all should acknowledge when we’re working in this world, in hospice, death is hard.

What they’re responding to has nothing to do with you and may be part of a long-standing dynamic in this family that’s been in existence for many, many, many years that nobody’s ever tried to change. I think the very first thing is just recognizing that they are feeling a lack of control. And sometimes you’re experiencing that as their projection of their emotion.

So pause first. The very first thing you can do for yourself and for them is to pause. When the emotions are high, bonding immediately is not always the most helpful. Take a brief step back, and I don’t necessarily mean literally, it could be figurative, but just take that moment, breathe, and then think about leading with your heart. Be compassionate, be kind, be clear, be unambiguous, and try to connect the dots. For yourself, then make sure you have places to actually process this sort of experience, especially since very few of us, no matter what role you have on the team, come to this work without having had our own experiences with grief, loss or death.

So, a lot of what you feel or hear or experience in some of these irate rants and concerns that families have are also things that you might be thinking about in relation to your own personal experiences. So making sure you have a place to actually process, talk to your team, and ask to find out what outcome of the story was. Sometimes that really helps you the next time you’re faced with going into that, because then you’ll hear, I was the anchor in this moment, I was able to pass that support on, and they actually ended in a good place, or they got to a good place, or they’re receiving support that they need.

[Tony] (16:58–17:58)
Thanks, Yelena. So, Jordan, I kind of want to pivot to you now, and to set the stage, you were the person for a long time who would be the one who would have to do these reviews, who would have to answer Facebook messages and Instagram DMs and all of that. And you advise a lot of our clients on this now about how to respond.

And I guess, you know, in light of what Yelena has said, which is such a great insight into what these families are actually going through and how that’s all playing out, can you maybe just start by talking about how you’ve advised clients on what infrastructure is important in building a high-level response plan to a negative comment on Facebook or a negative review on one of the review sites? So how do you, where do you start?

[Jordan] (17:59–20:35)
Great question. Well, I think the most important thing, and we’ve talked to a lot of our clients about this, is having that kind of playbook and framework so that when you go to read a review, you’re reading a comment, you have a plan already somewhat built in. So if that’s templated responsive, how you could reply to comments, how you could reply to reviews already in a template form that you just need to update, that’s a really good starting place.

But for any sort of reviews that are maybe less of the positive ones, they’re maybe a little bit more negative, they feel like they’re coming with some grief. Having an escalation chart within your organization of who do I call upon for help, who can I reach out to before I respond to this, maybe I want to get some feedback, we advise to respond within 24 hours. Having that responsive piece is really important. Say something. I think that gets lost a lot too when we talk about reviews that we’re thinking … this is just going to be read by the individual that left the review, but that’s not the case. It’s also being read by potential caregivers or patients themselves and how you show up and respond quickly to these kinds of concerns that could be coming in through online forums or on review sites is also really important. And then responding with empathy, thanking them for leaving the review, letting them know you’re seen. And I think a lot of times people want to leave reviews that someone can acknowledge that the care was taking place and that they need an outlet to talk to.

So bringing that conversation offline, you’re so limited in what you can say back to a family in these spaces. You never want to reveal any patient identifying information. You want to be absolutely compliant with HIPAA, but you can still be empathetic in how you respond and provide that opportunity to bring it offline, whether that’s a phone call or an email and letting them know that someone will be reaching back out to them.

And giving them that space to be honest. And sometimes you just, like you said earlier, Tony, take it on the chin a little, listen to those family members, hear their concerns, understand where they’re coming from. Even if you are limited in what you can actually say back to this individual, let them be heard.

Make sure that they have a space to leave stronger feedback that is being taken seriously by your organization. And sometimes in that feedback too, this is a really good point for organizations to understand what could have happened, how they could do better. There’s often in reviews or in online comments that are being left, growth opportunities for your organization to look at.

Are there areas you can improve? How could this have been addressed differently? It’s a really good pulse check on how your organization is providing care and sometimes looking at your reviews.

[Tony] (20:38–22:02)
Thanks, Jordan. I think you answered a couple of the questions I was going to ask all at once there. But actually it kind of spurred another one for me because you’re absolutely right that if I’m choosing where to go to dinner, if I’m traveling somewhere and I just pull up Google and type restaurants near me or whatever, I will look to see .. it influences my decision as to whether a place has responded to their reviews, but I give them some negative marks if the review is exactly the same for every review that’s negative. “We are sorry you had this experience. We would like to learn more. If you could please reach out to us.” If it’s clearly copy-pasted that way, that’s a problem.

Nothing smacks more of corporate or we are doing this to cover our butts. How do you deal with that? What are some of the ways you’ve advised clients to HIPAA sacrosanct, we’re not going to expose ourselves to that risk, even if we were completely in the right and we know that this person is just frustrated and we are bearing the brunt of that, how do we write these responses that are genuine and authentic when we are so hamstrung by patient confidentiality?

[Jordan] (22:04–24:03)
That’s a really good question. I think customization. So while you can’t reveal a lot, if there are small tidbits of information that you can go off of. For example, if it’s a really positive experience and they mentioned something very specific, you don’t have to confirm nor deny that care was provided in your response, but “Thank you for sharing such a wonderful experience that your loved one had. We’re so glad we could be there in this moment. We’re so glad we could be there” … if they’re talking about a specific situation that happened. I think with negative responses, you have to be a little bit more careful in what you say because you always want to deescalate and you don’t want to feel like you’re defending your organization in any way. You want to hear from them first. That’s the main thing is how to respond offline. I think you can still customize to some extent if they’re saying … “We want to talk to a leader” … “Our leadership team will respond as soon as possible.”

Look for the clues that you can say within the response while still remaining compliant. I think this is a really good opportunity to build out a template over time. If you are seeing certain themes continuously pop up in your reviews or you handled a situation that was super unique, save that response. Use that to guide future responses moving forward. I think sometimes we get stuck on saying the right thing all the time and sometimes you do just need to phone a friend within the organization and get some other feedback. Sometimes what you read in a review is going to differ to how someone else reads that exact same review.

And so having this team, again going back to that, do you have an escalation chart in your organization of who to contact and getting these different experiences before you even leave the review can be helpful. If you’re absolutely stuck and you know something is going to sound very template, very generic, you don’t know what to say, reach out to your bereavement team. Reach out to your patient experience team.

There are people within your organization that can help offer other alternative views on how to respond.

[Tony] (24:05–25:31)
Thank you, Jordan. That’s great. And I’ll get a little bit out over my skis and either of you slap my hand if you don’t think this is a good idea, but this could be a place where AI can help, not supplant.

For all our listeners who are just listening to this, Jordan has given me the hairy eyeball, but one of the things that AI is good at, I mean, it’s regenerative text. So if you need four different ways, you have the sentiment, you are a caring individual, you want to respond with empathy and compassion and understanding and deescalation, but you don’t want to say the same monotonous phrase, asking GPT to, in a compassionate way, give me some options that I can then customize and vet, right? The human is in charge, but I need help finding different ways to say this so that my authenticness shines through and I realize that that is a funny sentence to say, but I think it can help.

I think this is one place where technology, just like having a copy-paste bunch of responses is a technological tool we use to be more efficient in responding to these things. Maybe AI helps a little bit there, too.

[Yelena] (25:34–26:31)
I’m a clinical bioethicist and I’m a big supporter of AI as a part of sort of your team or your perspective. I think, Tony, what you’re talking about is the response, but I actually think one of the gifts of AI is similar to what Jordan was talking about, which is the idea, right?

Like Jordan, I’m rephrasing this, but you’re basically saying, read the review and listen for what they’re telling you, right? Like you’re reading for their cues, that’s listening. I think AI does that very well.

You can also run that through AI and say, “What do you see that stands out as a trend in this story,” right? That also can help you then pave the way of how to respond, which then can come to the human heart, right? Or, Tony, your point, it’s possible that AI could provide you a direction as long as the humans are checking it.

[Tony] (26:31–26:31)
Yes.

[Yelena] (26:31–26:41)
But I think it’s actually a helpful tool to tease out the trend or the story, or maybe even the root of what’s happening or what’s being said.

[Tony] (26:43–26:44)
Thanks, Yelena.

[Jordan] (26:44–27:36)
Can I add one more thing to that, Tony? One of the best things I ever did when I started to answer reviews was to go look up local providers in my area and read through their review responses.

If I really liked a certain phrase or if I thought, oh my gosh, I could never say this, I can’t believe they did, I’m making note of that and I’m writing that down and looking for, again, these themes consistently of what you could apply and even running some of those through AI or taking another organization’s responses and going, hey, is this really the right thing to say and bringing that up to your own team?

Or how would we have addressed this differently? Being a little proactive and doing some research before a crisis communication hits, that can be really helpful in phrasing and being prepared for if you do get that negative review, how you want to respond differently.

[Tony] (27:37–28:22)
Well, that’s a perfect place, I think, Jordan, to end it, is we’re not in this alone. It’s a hospice community. I don’t know of any hospice in the country who wouldn’t reach out to another if they were dealing with a complicated situation, especially something that was about clinical provision of care.

And so, I think that’s a wonderful sort of final takeaway. Yelena and Jordan, I can’t thank you enough for being here. And for long-time listeners, you know that I’ve started, again, it’s Stephanie Johnston, our CEO’s suggestion, ending these with a complaint. She wants to turn me into Andy Rooney from 60 Minutes, which I know dates me as an elder Millennial/Xennial.

[Jordan] (28:22–28:25)
60 Minutes, Tony. I love 60 Minutes.

[Tony] (28:25–29:38)
Yeah, I know. But Andy Rooney died like 20 years ago. So anyway, my complaint for the day, and this just happened today, I was on another, I was on a committee call for some work with the Alliance.

AI, as we all know, is helping with so much. But I kid you not, there were just as many AI notetakers on the bleepin’ call as there were actual people. And I was the one who had started the call. And so, I literally had to go back into the call after everyone had left and boot out, like three different AI notetaker bots. And it’s like, people, let’s practice some AI bot hygiene here, okay? Like, you don’t need to record every meeting with AI. Nobody is going back and reviewing the notes from the Hospice Council Growth and Access Subcommittee to make sure they didn’t miss anything, right? So, AI is our friend. We’ve talked about so many of the great uses, but enough is enough, people.

Okay, rant over. Yelena, Jordan, any final words?

[Yelena] (29:42–30:10)
Tony, it’s because AI has learned to clone itself and humans haven’t yet. No, thank you for the opportunity to talk about this. I think like the most important thing is respond, find support, help those families and chosen families find support. And yeah, leverage your communities. We are one community. Our intent is to take care of as many patients, chosen families and bereaved clients as are eligible for our services and need them.

[Jordan] (30:12–30:33)
I don’t know if I can top that. That was so beautifully said. I’m in the same boat, though. Respond. Respond empathetically. And whenever you can, take those conversations offline and truly agree we’re all one community. And as an industry, we need to take care of these patients and their families. And not every review is going to be a positive one, and that’s okay.

[Tony] (30:36–30:48)
All right. Well, Jordan and Yelena, thank you so much. Thank you for helping us understand this a little bit better. And thanks for all you do for the community. We’ll catch you next time on Transcending Home Care.