Avoiding Regret: 4 Key Steps

In the serious illness space, regret is rampant. 

Caregivers often regret what they did or didn't do when caring for their loved one with cancer, dementia, or other life-limiting illness. Physicians and other clinicians may regret the goals of care conversations that we meant to have but didn't get around to.

Regret is terrible and its negative impact can linger long after the ill person has died. One of the key tasks in serious illness care is to help everyone involved avoid regret.

This week I discuss four steps that we can all use to help us, our loved ones, and our patients to avoid regret.

Dr. Delia
Delia Chiaramonte, MD
www.integrativepalliative.com

Coping Courageously: A Heart-Centered Guide for Navigating a Loved One’s Illness Without Losing Yourself is available here: www.copingcourageously.com 

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Transcript

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Welcome to the Integrative Palliative Podcast. If you care for the ill or aging, either at work or at home, this podcast is for you. You'll get plenty of tips for how to help care for the ill person and just as many tips on how to care for yourself. I'm glad you're here. Let's get started. Welcome to the Integrative Palliative Podcast. I'm Dr. Delia Caramanti, and today I want to talk about avoiding regret. Regret causes so much suffering. And when I was in practice and caring for families, it really struck me how often families made decisions that ended up filling them with regret. And I think one of the key tasks for palliative care clinicians and also anybody caring for people with serious illness is to help the families avoid regret. Because of course, sometimes things don't work out how they want them to. And when you're making a decision, you don't know how it's going to work out. But the idea of making a decision now that no matter how it turns out in the future, you're going to feel good about the decision. So sometimes in helping families figure out what they were going to do, I would ask them to imagine the future. Imagine that they made choice A, and it unfortunately did not turn out how they hoped. How would they feel about having made that decision? So what I mean is, let's say that their loved one can't speak for themselves anymore and had said they would not want any more chemotherapy, and the family is trying to decide, well, should we do more chemotherapy or should we not? Yes, they told us they didn't want it, but gosh, the oncologist said maybe there's some small chance it might prolong her life by a little bit, but the patient can't talk for themselves right now. Using this technique, you would go forward, so imagine that you decided to do the chemotherapy. They had told you they didn't want it, but you decided to do it, and then it didn't prolong their life, and in fact, it made them so sick that they ended up in the intensive care unit and ultimately they died. How would you feel about the decision that you made? And in contrast, let's imagine that it's the future, you made the decision not to pursue chemotherapy, and the patient died, your loved one died. How would you feel about the decision then? And what I find is that it helps people clarify, oh gosh, the decision that we make, we don't know if it's going to work out for the best or not, but the worst case scenario is possible that it won't work out, and then how would we feel about the decision that we made? And in that little scenario that I just gave you, I have found that often people will say, oh gosh, you know, we went against their wishes. I'm imagining it didn't work. I would feel so badly that we had gone against their wishes. I would regret that decision. Whereas if we went with their wishes and they died, we would of course be sad, but we would, I wouldn't regret going with their wishes. I would feel like, okay, you know, I'm so sad this happened, but that was what they wanted, and that was what we chose. So sometimes for the right family member in the right situation, if they're able to have that kind of imagined conversation with you, you can ask them to go into the future, imagine the two decisions that they're trying to work with, and imagine they didn't work out and look at how they would feel about that. But in general, the idea of avoiding regret, I think is relevant, certainly for families, but is also relevant for clinicians because we have regrets too. And in thinking about what is it that can help us, either as clinicians or as family members, avoid regret in caring for someone with a serious illness, I think there are four things that are most important. The first one is to prioritize the relationship. So if you care for people with serious illness, you have certainly seen this kind of situation where a patient is declining, they're not interested in eating very much anymore, but the family is obsessed with them eating because they have to eat to stay strong, or this is how we show love. And so there's conflict now around eating, constant conflict around eating. And so in that case, in real life, is eating a few more bites of pudding going to prolong this very ill patient's life? No, it's not. But what it can do, that conflict, is it can ruin the last part of your relationship, the last amount of time that this family has together. So if we work to prioritize the relationship over the bites of pudding, it helps the family member see that they're actually better off not harping on have a few more bites and instead spending some quality time together. So prioritizing the relationship is really important. And I think it's an important thing to tell families. If you're a clinician, it's a really important thing to tell families because it's heartbreaking. And talk about regret, it's heartbreaking if the last time that you have with someone that you care about becomes filled with conflict when the time is so short, it should be filled with love and time together and connection, not with conflict over things that are not going to change the outcome. So prioritize the relationship. Prioritize the relationship. Tell families that it's really important. Prioritize the relationship. That's one. Number two, for the person who is trying to avoid regret, be it a family member or clinician, preserving their empathy by setting boundaries and filling up their own cup is really important. They have to preserve their empathy because if your empathy gets low, you're more likely to do things that you're going to regret. You're more likely to be cranky, you're more likely to have conflict with a person, you're more likely to be rigid, you're less likely to bring joy into the room if your empathy is low. And our empathy gets low when we get burned out, when we get stressed, when our cup is empty, when we don't set boundaries and we take on too many things and then feel overwhelmed, all of that stuff decreases empathy. There's good evidence that in burnout in clinicians, one of the first things to go is empathy. So preserving your empathy helps you avoid regret because you show up differently. You show up with more joy, with more connection, with more patience, and you're much less likely to do things that are going to cause you regret in the future. So that's two. Preserve your empathy. Number three is to turn down your control ometer. So we all love to control. Some people love to control more than other people, but pretty much everybody loves to control. And family members who are facing an ill-loved one grasp onto things that they can control because they can't control the most important thing, which is they wish their loved one would get better. And so that's where the control around food comes, the control around you have to get up out of bed for someone maybe who is so ill that they really can't get up out of bed. There are multitudes of ways that people try to control each other, and it almost never improves the situation or improves the relationship. So there are some things, of course, that are important to control, like you should take your pain medicines if a person wants to relieve their pain. But really what you want to look at when you're trying to think how how attached should I be to this attempt to control something is will this matter in the grand scheme of things? Sometimes we control just because it makes us feel better, but in real life, if this person opens the shades versus doesn't open the shades, if they really don't want to open the shades and you think they should, in the grand scheme of things, does it matter if the shades are open? No, it doesn't. But if you have a fight about it, that does matter because maybe there's not a lot of time left. So this harkens back to prioritizing the relationship. Being overly controlling damages relationships. So turning down the intensity of our efforts to control can really help us preserve relationships. We only want to try to control things if there are two, one of two situations, which is can we have a significant impact and is it going to matter in the grand scheme of things? So can we make a significant impact and is it going to matter in the grand scheme of things? And those things are relevant also for us as clinicians. You can always give more chemo, right? But is it going to have a meaningful impact in the grand scheme of this person's life? Is it going to have an important impact, or is it just treatment for treatment's sake, in which case maybe we have to look at our own attempt to control the uncontrollable, such as an advancing cancer? And the truth is, if we're caring for a patient, even if we have a very good treatment and they don't want to take it and we've done all the explaining and we think they understand our point of view and they have their own reasons and they explain, no, this is why I'm not going to do that, at some point we need to turn down our own controlometer and prioritize the relationship with the patient and say, okay, you know my point of view. If you change your mind, please come back. If you have any questions, please ask me. But I hear what you're saying and you get to make your own decisions and okay. As clinicians, if we try to control too much and then we damage the relationship with the patient, not only do we decrease the chance that they're going to come back later to us where we might have the impact that we're hoping to have, but we might damage the relationship with this patient permanently and no longer have them in our practice. So even as clinicians, sometimes we need to turn down our own control ometer. That's three. And number four, ways to avoid regret are to communicate, communicate, communicate. So what are the elephants in the room? What is the stickiness that's happening between you and this other person? What are things that need to be said? If this is a caregiver and a patient, a loved one of theirs, what are there old wounds that need to be healed? Are there questions to ask? Are there end-of-life wishes to discuss? Because I've certainly heard that in practice many times. Oh gosh, standing at the bedside in the ICU, we have no idea what she wanted because we never talked about it. We knew we should talk about it, but we just didn't. We were afraid, we didn't know what to do, it was uncomfortable, we never talked about it, and now here we are. I wish we had talked about it. That's regret. So what are the conversations that need to happen? And as clinicians, this counts for us too. Clinicians sometimes avoid goals of care conversations because we don't want to make the patient angry. Maybe it feels, quote, too early. It's never too early for a goals of care conversation, but it feels like maybe it is. We don't want them upset with us, and so we avoid, and then all of a sudden the patient's intubated, unable to communicate, and we might regret, gosh, I really should have had them fill out that advanced directive. And now the family is suffering having to make these decisions without an advanced directive because I put off having this conversation with the patient. That's regret. Okay, so four things to help us and the families that we take care of avoid regret. Number one, prioritize the relationship when you're dealing with somebody who is seriously ill with an illness that can't be cured. That's probably the number one thing. Prioritize the relationship. When you're not sure, should you harass this person about something or not? Should you harp on something or not? Remember to prioritize the relationship. That's one. Number two, preserve your empathy with all of the ways that you fill up your own cup. Number three, turn down your control ometer. Try to control less, try to be present more and control less, unless there is a clear impact that is meaningful in the long term. And then number four, communicate like crazy. Think about what are the conversations that should be had, and let me just be brave and have them. Because not having conversations is a big source of regret. And for all of us this week, let's think about what do we need to do so that we won't regret something. If you have a loved one who's ill or aging, what do you want to make sure that you say? What do you want to make sure that you do? Do you want to have them record their stories? Do you want to take pictures of them with all the grandkids? Do you want to put together a photo book of the important things that they've done in their life? This is holiday time at the time this is being recorded. And maybe you'll see your relatives. Think about is there something you want to say so that you won't regret if you don't get to see them again? Because you never know. So that's our homework for all of us this week is to think about what might we regret and what can we do to reduce the chance that we will have regret in the future. What do we need to say or do to avoid regret in the future? That's it for today, everybody. Thanks so much for being here. I'll see you next week. Bye-bye. This podcast is brought to you by the Integrative Palliative Institute. Visit our website, integrativepalliative.com. There you can access physician and clinician training, well being coaching, free downloads, and other cool stuff. And feel free to connect with me on LinkedIn and share your favorite episode with a friend.