Peace of Mind for Pet Parents Episode 033: The Missing Word: Why “Terminal” Matters in Talking with Your Vet

Episode Transcript: 

Karen Wylie: Hello and welcome to Peace of Mind for Pet Parents. I'm Karen Wylie here as always with my dear friend and co-host Gail Pope from BrightHaven. Today we are going to be talking about something that's rarely said out loud and that is the missing word in many conversations between veterinarians and pet parents. That missing word is "terminal."

So often a family hears that their pet may have cancer or some other diagnosis, maybe kidney failure or heart disease, but they're not told very clearly that this illness their pet has is not curable. So instead, the focus seems to shift to treatment options like chemo or special diets or possible surgeries, supplements that could be given. The hope is that at least one of those will bring about a cure.

Meanwhile, death becomes this shadow in the background that no one really wants to look at. 

So Gail, as you think about this situation where the word "terminal" is not really mentioned in conversations between veterinarians and pet parents, what does that time mean for a pet parent when there is knowledge that their pet is ill but they're not being told it's terminal? What can happen? What can that mean for a pet parent after that point?

Gail Pope: I think the answer is a little mixed for that question. As a pet parent, if you know that you are dealing with a terminal illness, that can be a mixed response because you are focused on the fact you know your animal is going to die. You don't necessarily know how long they've got and you have that innate fear of death sitting with you. 

On the other hand, if you do know and you've absorbed that information— it gives you precious time to actually focus on living at this point. Rather than having a mindset of dying, you have a mindset of living each day and that makes a huge difference in each and every day.

Karen Wylie: Yes, because it allows the pet parent to infuse every day with meaning or to find or discover meaning along the way -  rather than struggling with it afterwards. 

Why do you think veterinarians seem reluctant to talk about an illness being terminal?

It would seem that part of it is fear. Part of it is probably they know the family is going to be heartbroken by the news. So softening the message, at least in the first sentence or two, I can see where that could make sense. 

As they would begin to elaborate more specifically on exactly what's going on, perhaps some of them want to help the family hold onto hope. That may be a nice thing to do, and yet if the illness or diagnosis is truly terminal, then you got to be careful with that "holding onto hope" stuff.

Gail Pope: You just brought up an important point there. Sorry, I don't mean to be flippant, but let's face it, life is terminal. Everything is terminal.

So it is a difficult word to play with and I think the word, in particular, cancer…There are certain illnesses that we know will generally be terminal. We also know that there is sometimes a cure that happens for no apparent reason. 

People and animals do recover and I think sometimes veterinarians have the goal of cure in their own minds. That's why they're a little reluctant to suggest that death may be on the horizon because they're going to really work at this and we are going to see good things happen.

Karen Wylie: So you're suggesting, for at least for some of the vets, they haven't given up on hope themselves yet either.

Gail Pope: Exactly. We all have trust in the medicines that we use in different ways, different shapes and sizes. I'm just thinking from personal experience, I wouldn't call it a terminal diagnosis, necessarily heralding death, but I guess I've done it so many times that my brain knows that it's a distinct possibility. Then I shift to the world of hospice that I've grown in and it's "Yes, life itself is terminal."

So we'll keep that thought over there and now we'll do our best to make each day be a great one. 

When you can turn the conversation around to being in the moment, to acceptance, doing your best with love— all the things that we talk about, then you can actually bring that word "terminal" in there and face it. We don't want to face the word ‘death,’ but we know that death is around the corner for all of us.

Karen Wylie: Knowing and then accepting it - or even allowing it in to begin accepting it - is a whole other process and it's difficult. Just like you're saying, you've been around the block enough with animals in the sanctuary and your own pets. 

When you begin hearing what the disease is that's been identified and what their condition is or other comments, in a lot of ways, you don't have to hear the word "terminal." Your experience gives you context. But as you're saying, who knows how long? Let’s  just see and make every day the best that we can.

I'll just add, I've never had a veterinarian in all these years tell me that one of my pets is terminal. So it's also been something I have to figure out. We know that we've heard this from other pet parents and clients who have been blindsided really because they...

Gail Pope: They had no idea.

Karen Wylie: They had no idea. It's for vets who are showing compassion by trying to be very gentle in how they phrase everything, the language they choose or don't choose, changes everything. 

If the truth is softened too much, then families are left unprepared.

Gail Pope: Exactly. They don't have the gift of time to become accustomed. I don't know if you can ever become accustomed to approaching death. When you watch your animal getting a little slimmer, aging even will take you along into that conversation but it can seem to be around the corner.

That's when education steps in because if you understand these signs are starting the wind down process, that's when you start appreciating each day better because you know that time may be limited. Maybe limited for all of us.

We should all try to enjoy today because it always may be our last. We just don't know. But that's not a mindset that most of us could live with.

Karen Wylie: True. And so often, when someone hears the diagnosis of their pet— when I say diagnosis, I don't mean terminal diagnosis. The diagnosis of hypertrophic cardiomyopathy or the stage three kidney disease, or some kind of disease name. It's not even written down anywhere. Most of the time we check out at the front desk of a clinic and the only thing that's written are the services that were performed and how much we're being charged for. 

The actual diagnosis is nowhere to be found.

What I have seen happen is that the pet parents just come home and maybe they have dinner and they're in shock. Then the first thing they're doing is heading over to Dr. Google to try to learn what they can do to fight the disease, to fight the diagnosis. That becomes their preoccupation, it becomes their focus. That leads back to what you were saying, how it then deprives people of making the most of the time they have because they're so in the middle of that struggle.

Gail Pope: Yes.

Karen Wylie: Of course one of the things I've noticed as have others is that hospice is generally not mentioned as an option.

Gail Pope: True.

Karen Wylie: So, I always have to wonder if hospice was more discussed as a possibility, would it be easier to talk about the fact that a diagnosis is terminal?

Because if you talk about something being terminal, it means there are no more treatments left. Generally in the veterinary world, that means that the only remaining treatment or procedure that can be offered is euthanasia. 

So then that really steps into terminal diagnosis means death. Whereas if hospice could be offered as a true option, then a pet parent could take in the fact that the diagnosis isn't good. It's likely to mean they're going to die from that diagnosis, from that disease.

There would still be things they could do, not fixing, but comfort care and making every day what it can be. 

These days we see that there's a lot of mention of hospice as an option on veterinary websites where the services are being described. Yet, if you call to find out exactly what their definition of hospice service means, it very often is that they will conduct a quality of life assessment on your pet, that’s really about determining if it's time to euthanize as opposed to monitoring quality of life care over a period of time to make sure that the pet is still enjoying their life, even if their physical condition is declining. Looking at it, what can we do on a week to week basis?

A lot of times if hospice is mentioned, it's not really true hospice, in my opinion. And I know some of our students in the Animal Hospice Group have talked about going through training in animal hospice and obviously believe it's a wonderful option for everyone to have.

So they're looking for it when they have a pet that's received a difficult diagnosis and they start calling around to find out what clinic is offering hospice services. 

They'll be talking about how they call six clinics and the only hospice service that's being offered is a quality of life assessment prior to euthanasia then on the seventh or eighth call— it's actual "Hospice." However that clinic defines it, which of course varies everywhere.

Gail Pope: Of course your conversation about the word hospice has brought me right back into my own recent memories of when my husband died and back into the human sector. Because in the years that Richard was basically heading towards dying, his personal focus was, "I’ve got to kill it. I’ve got to kill it. I'm going to make this go away”. He was not in any way remembering our daily work in hospice at all, which was very sad and yet it was, it was his way. 

We have to honor what other people believe is right for them. He went from doctor to hospital to more doctors, to all the various ailments that were presenting to him. Not one until the very last one that I was with at an appointment, and he didn't even use the word hospice but he started describing maybe a better way that we weren't taking so many medicines.

And I was able to smile and say, "Oh, it sounds like you're talking about hospice.

He went, "Oh." And he said, " I can't really talk about this different approach with almost all of my clients because they don't want to hear it."

And Richard disappeared down into his chair. 

He didn't want to hear it but once it was out, then it opened a door. It was a very important door as well because although we didn't have much time, it changed the understanding. And I think that's what we're talking about today, is education, understanding, where we are in this moment with this illness, with our loved one.

So that we can be there to love and to help but if we don't know, we just need to be able to share and know and find the way forward. Those who learn about hospice— I love reading human hospice books. They're generally stories of clients, of patients and their journeys. They're beautiful.

And you see this kind of thing over and over again. So many people deny the knowledge of death approaching and others embrace it. I guess we're all different. But I do think as professionals in the field of veterinary medicine or other medicine, it's a difficult conversation to have with someone, but I think being honest in a gentle manner is— there's always a way to just gradually step into the understanding.

Karen Wylie: Yes. It's interesting when you bring up the last few weeks of Richard's life because I remember that time and some of the stories that you were sharing because I'd get maybe a midday email from you and then an end of day email from you.

I remember one time that you saw two women out in the hallway looking in at you. I don't think this was ICU, I think Richard might have been out of ICU and in a regular room for a few days or something.

But you were wearing your Animal Hospice Group T-shirt and you described how these two women were like, "Oh my God, this is amazing. You know what hospice is."

And they felt so freed up and were describing to you how unusual it was because usually they're walking on eggshells, not sure what to say, how to say it, and so forth. And you wearing that shirt gave them that entree that "okay, she knows something about this. We've got a starting point."

Gail Pope: Yes, that was a wonderful experience for all of us. It really was because for me, it was meeting somebody— they weren't actually called, they hadn't been employed to come and see Richard. So they weren't looking to come to this particular room or anything but just seeing them and talking to them, it made me feel so much better because they understood, whereas the staff in the hospital didn't. 

They didn't really have a concept of hospice. They were doing what their job was, which is focused on the medical aspect and what are we going to do to help these symptoms go away, but we're not going to talk about death and dying.

Karen Wylie: Right. Because whether it's human or animal, the word hospice means the loved one is close to death. You don't want that word used because then people are going to be very upset. What is so sad of course, is that when hospice is equated with death, then the whole meaning of what hospice can be gets lost.

Gail Pope: Yes, it does.

Karen Wylie: With hospice being in the human area about living fully until the last breath, and generally speaking, that's the same approach we take in animal hospice.

Gail Pope: Of course, 100%.

Karen Wylie: So how would you describe what true Animal Hospice is? Because that's something you were always striving to do in the BrightHaven Sanctuary with all your animals.

Gail Pope: I was doing hospice care for probably 15 to 20 years before I even understood what hospice was and that was a huge revelation to me because, again, the word hospice meant death to me. 

So it was one that I'd stayed completely away from because our focus was on living well all the way through life. It was all about living. It wasn't about dying although dying was a part of the work we did because we specialized with senior special needs and medically challenged animals.

So yes, they died and that was part of what we did, but our focus wasn't on that. It was on how to make each day be the best it could be. So when I discovered the work of hospice and again, started reading books and talking to the experts, it just opened up this whole chasm of interest for me.

I love it but I still find it difficult, because many people just still equate the word hospice with death, rather than having the education to understand the beauty of hospice. In human hospice and in animal hospice, a lot of people don't even start to explore the idea until the being has a few days or a few weeks left to live only.

The ideal thing is to begin that process once you are starting the journey towards the end of life. 

You see the being winding down or you get a difficult diagnosis and then you start to kick in. It's all about comfort, care, and love, living in the moment, acceptance, making every day the best it can be and that, to me, hospice is really a gift.

Karen Wylie: Oh I completely agree with you on that. The opportunity to go through the end of life with a human or a pet that we love, and knowing that time is limited just makes every moment a little bit sweeter, more meaningful and having that knowledge is so helpful. 

Like you, as I would be providing caregiving at home to my pets that were declining, I had no idea I was providing hospice care. No one ever phrased it that way. I never thought of it that way.

Quite frankly, I was two or three certifications into human end of life about hospice when it dawned on me, "Oh my God, this is what I'm doing. This is what I've always been doing."

And so yes, I think we can just get detached just because no one brings it up. And if no one brings it up, we may not think about it. 

In the human world, there's this whole problem called “late to care” which we have talked about on previous podcasts and that is that for whatever variety of reasons, the medical professionals are uncomfortable mentioning what's happening is getting closer to death and hospice might be an appropriate thing to consider. Maybe it's family members who don't want to even think about it. Maybe it's the person who's dying who is in denial, right? Any or all.

But as you're saying, sometimes it's just a few days when someone is admitted to hospice and they die without really having any benefit of all the wonderful services that are available under the hospice umbrella. 

So let's talk a little bit about the real impact day to day for a pet parent when this truth about what's actually happening with their pet is softened.

So by delaying the truth or not phrasing it clearly, the pet parent is not as prepared as they could be for what's about to come. 

So one of the things I was thinking about as we were preparing to have this conversation today, was someone we were speaking with over the last couple months who had a dog with cancer and they spent like $20,000 on all sorts of specialists fighting the disease. Even the day before the dog was euthanized, they were told that they'd beaten the cancer. Then whatever happened suddenly overnight and the next afternoon, the dog was euthanized. 

That family had never been prepared for this possibility. The focus had been on fixing and beating disease and curing, as opposed to this other possibility that could also happen, that could have been one of the possible outcomes. 

So they were also not talked with about aftercare options. 

And in their shock, when they were very briefly told about cremation options, they chose communal cremation rather than private. So they never got the ashes back from their dog which then affects how people grieve and how much they regret or feel guilty later on and how long lasting that can be. 

Whereas when we're focused on the physical body of the living pet, maybe the thinking is when the physical body dies, there's an end to it but we all know that is not the case.

Gail Pope: You also brought in the grief word, and I think that's an important part of this discussion too. Because when you know that life may not be as long as you'd hoped for, for a loved one, that's when you can start to grieve or most people do start grieving. Grieving with the person, the animal who's dying, is very special.

Anticipatory grief is very special because it's a together time. 

You both are facing the same things on a daily basis, and so it's a way of talking and working through some of these things so that the grief doesn't hit you so hard as obviously the person that you were just describing that grief. Oh my gosh. I can't even begin to think what it would be like. One day here and the next day gone and that, that's awful, isn't it?

Karen Wylie: It is. Because as difficult as it can be to speak directly to a client about what's going on with their pet and of course, even in our capacity, we're not veterinarians, but we provide emotional and caregiving support to pet parents. 

So sometimes that does involve reflecting back to them what they're saying but perhaps helping them hear it in a different way. So it's not the same as a veterinarian giving a terminal diagnosis and being very clear about it.

Being told the truth about what's happening to your pet gives you a gift and the gift is preparation. 

Being able to prepare and think through some of the decisions that you will have to make and begin getting a sense of what feels right to you, according to your values, according to what the rest of your family members want, what you believe your pet would want. 

And all that preparation also then allows you to feel peaceful about the process. So I think this concept of being very truthful and clear about what's going on has so many ramifications for the pet parent. It's just really essential that more of this happens more frequently - and with more clarity.

Gail Pope: Definitely.

Karen Wylie: And as you've spoken about earlier the medicalization of the dying process, which is what Richard was choosing as his focus was on fighting and curing and that struggle. 

I know that medicalization is something that you encourage us all to avoid, and it's certainly something you avoided in how you approached diagnoses and the likelihood of death sometime down the road with your own pets.

Gail Pope: I think, and partly that's because BrightHaven, since very early on, took a holistic approach towards living and dying. 

Consequently, I guess because our focus was on healing for the highest good. That alone, actually as I'm saying it now, I'm realizing that really opens up what we're talking about— healing, the remedy, whatever that may be, is given for the highest good of the patient and we don't know what that is…..is for the highest good for them to get healthy and strong and well and live on? It may well be. Or on the other hand, it may be to help them have a peaceful and easy or easier transition to whatever else is coming next.

So I think it's just a slightly different way of looking at things. Rather than seeing that brick wall at the end that is full of fear and a solid block to life, is to just concentrate on living. Living as well as possible until there may come a time where a decision may have to be made. Again, whether you're a human or animal.

Karen Wylie: The idea of approaching all this from the perspective of healing for the highest good, it's not just about what's happening with your pet's physical body, but it also can be about you and the relationship you have. 

I guess that's part of the shift we're talking about is being able to make that shift from focusing on curing your pet to caring for your pet. On one hand, people think that's giving up but you're getting something different when you're able to make that shift.

Gail Pope: Absolutely. Gosh, I don't even quite know how to express it. But when I think of the number of times that we've employed that mission "Healing for the highest good" and let go of what the outcome should be, that's how we've had cats and dogs living into their middle or late twenties, cats into the thirties. 

Because as we've let go of the medicalization and concentrated on just whatever the healing type was or different types and just allowed that energy to flow, we've often seen what we might call a miracle. Yet, we just let it go, let it be, and sometimes it goes to transition and sometimes it goes to transition for better living.

It's just a different approach. We're all human and we can only follow our own way and the understanding each of us has. I think we can each learn as we go, and very gradually maybe do things a little differently.

Karen Wylie: I do want to mention that we have talked at length about healing for the highest good here on a previous podcast. As well as, the kinds of things to think through when you're ending treatment, when you are making a decision to stop that focus on fixing and curing, and shift to caring and comfort. 

So we'll make a point of linking those previous two podcast episodes in the show notes here because they may be of help for anyone who's listening to this conversation and wanting a little more information.

I guess we're certainly covering a lot of ground today with this conversation, Gail. 

We started talking about this with veterinarians and our observation is that they seem hesitant to use the word "terminal" in a lot of conversations about diagnoses that are in fact terminal ones. 

I guess I'd like us to end talking about this a little bit more too, because our goal here is not to criticize the veterinarians. I think they're under incredible pressure emotionally, financially trying to fix what's broken. The veterinary care process has its own challenges, just like the human healthcare system does.

Both are under a lot of change and people are struggling to figure out the best steps forward. 

But it does seem that with the kinds of things that we're identifying and saying are important and are missing - this missing word of "terminal" - that maybe it's time for everyone to have a different kind of conversation.

Perhaps even asking each pet parent who may find themselves in a difficult conversation with their veterinarian. 

They can hear and understand that things aren't great about their pet but they're not hearing the word "terminal." 

Maybe it's time that each pet parent begins to take responsibility for bringing it up and saying, "Doctor, is this something my pet can recover from? Or are we now focused on comfort care?"

That could open a door for your veterinarian to perhaps be more clear, especially because if you're asking that kind of question, you're not clear.

Gail Pope: Yes, exactly. I think you've hit a nail on the head there because I think if doctors or veterinarians, doctors of any sort are asked that kind of a question, they will be honest and truthful. 

It's helpful and from the heart, because the client has asked the question. 

So it may be a little difficult for them to tread into giving the answer when they haven't been asked the question. So the more we as caregivers get used to asking pertinent questions because we really need to actually know the depth of this illness.

What does it mean for the future? We don't have to talk about death but we do need to have some kind of idea of what we know about it. 

Otherwise, everybody ends up going to Dr. Google and learning that way. As you say, that takes them away from daily life. It generally brings a lot more questions and thoughts and, "Oh my God, what if he's got that as well?" "I haven't seen that symptom." "Oh, better watch for that."

It can bring up an awful lot of other things in the mix, which you don't necessarily need.

Karen Wylie: Absolutely. And if you bring it up for your veterinarian, that really does free them up. 

Because instead of walking into the exam room, maybe they've gotten to know you well over a period of time with multiple pets coming in at various times, or maybe they've just gotten to know you for one or two appointments. 

They can be walking into a room and not have any clue of who you are emotionally, or how you cope with bad news. So you can understand how they would be reticent and how they would be cautious about how to phrase things. 

But if you ask these questions in that way, you're opening the door, you're giving them permission. You're basically saying, "I'm somebody you can talk to about this and I do want the truth."

Now it'd be different if you're saying, "How much time does my pet have?"

Because they don't know. 

Unless you're in an emergency room and they're dealing with what they're seeing at that moment, and it's really critical. 

If it's a long-term disease that will ultimately be terminal, they can't answer how much time you have. But asking, "Is this something my pet can recover from?" Or "Are we really looking at comfort care?"

That's a softer way for you to phrase it too, which I think is a middle ground to begin to have these conversations. Because as we're saying, if an illness isn't curable, there is still usually so much that can be done to make your pet comfortable and to bring meaning to all the days, weeks, or months you may have left.

With that, I guess we will bring this conversation to a close because this missing piece that we're describing in the pet care process and end of life process is the word "terminal". 

But it's not just the word, it's the perspective that comes along with it— that living well while dying is still living as you would say, Gail.

So our wish is that someday every veterinary conversation includes not just treatment options but also time to talk about what living well looks like when cure may not be possible.

So with that, I guess we will say thank you as always for being with us, and we look forward to seeing you next time. Bye-bye now.

Gail Pope: Goodbye. Thank you.