Peace of Mind for Pet Parents Episode 075: The Late-to-Care Problem

RESOURCES MENTIONED & RELATED LISTENING

• PEACEFUL PDF - Free Download
• LIVING Quality of Life Care Assessment Tool — Free download
• BrightHaven Animals YouTube Channel — Search: BrightHaven Animals | @brighthaven_animals
• Animal Hospice Group (animalhospicegroup.com) — professional certification organization in animal hospice and palliative care

You might also find helpful:

• Episode 073: Reading What They Can’t Say: Pain, Comfort, and the End-of-Life Journal
• Episode 069: Preparing for Your Pet's Death — Physical, Emotional, and Spiritual Ways to Make Every Moment Count
• Episode 053: From Pet Parent to Caregiver: The Quiet Shift Nobody Warns You About
• Episode 069: Preparing for Your Pet’s Death: Physical, Emotional, and Spiritual Ways to Make Every Moment Count

Related reading:

• What Is Animal Hospice Care for Pets?
• Life-Changing Diagnoses in Pets: A Comprehensive Guide
• Emotional Support for Pet Owners Facing a Difficult Diagnosis: Coping with Guilt, Fear, and Grief
• Monitoring Your Pet's Health at Home: A Palliative Care Guide for Chronic and Difficult Conditions

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Episode Transcript: 

Half of all human hospice patients die within just 18 days of enrolling, and the same late-to-care pattern shows up in animal families every week. Today, Gail and I talk about why families wait too long and what hospice can actually give you if you don't.

Karen Wylie: Hello and welcome back to Peace of Mind for Pet Parents. I'm Karen Wylie. Here as always with Gail Pope, founder of BrightHaven. Today we're going to talk about human hospice and share some of the statistics, some of the uses or lack of use of human hospice. That kind of breaks our hearts a little bit when we hear about it because we think so highly of the potential for both human hospice as well as animal hospice, of course.

But let's start off with human hospice statistics, and Gail, I'm just going to read a little bit of this. Half of all human hospice patients die within just 18 days of enrolling in hospice and nearly a quarter of them enroll in their very last week of life. 

Even though hospice, of course, is available for them for up to six months. Generally speaking, a medical professional, in order to have someone accepted into hospice care, says that based on the disease and their condition, they're expected about, you know, within six months they will die. They'll live about six months. But all those people entering hospice late, it's often called the late to care problem.

Looking at why that situation exists because it's not that hospice doesn't help. It's because families wait and sometimes it's the patient, him or herself, who is delaying going into hospice care. And other times it's the family. They seem to wait because of what they believe hospice is and almost every one of those beliefs is a myth.  I guess it's the myths that you and I are going to be taking a look at.

So Gail, before we get more into the myths themselves, I wanted to share a few numbers with you and our listeners because I think they'll surprise people. So as I said just a minute ago, half of human hospice patients are enrolled in hospice for 18 days or less before they die. 

About one in four enroll in their very final week of life but hospice is designed to support up to six months of care. Almost nobody actually uses it for anywhere close to that. So Gail, in your years at BrightHaven, does that number, people waiting until there's almost no time left, match what you've seen with animal families?

Gail Pope: Ooh, I hadn't thought of it from that angle.

Karen Wylie: Yes, it's a little different.

Gail Pope: Yes, I guess it does. The numbers obviously are very different because animal hospice is much less known even than human hospice, let's face it. So yes, for me it's a mix of people who come to me after a diagnosis, which is wonderful because that's the time to really start to think about this last chapter of life. 

Then people who are getting close, and getting panicked towards the end of life, generally those people are afraid of euthanasia for various types of reasons. They're equally afraid of what might happen if they don't euthanize.

So then we've got another gap there between the how and the when should I make the decision for euthanasia. They don't realize they can step further along that road until that time comes. Again, it comes up for us week after week. The baseline here is fear, it's fear of death. You were talking about how people don't enroll in hospice for humans and it's because the caregivers themselves are afraid to admit that they're dying, or the family is afraid that the caregiver doesn't realize and they don't want to face it.

It's such a convoluted worry and it's all due to lack of education. Let's face it, at the bottom of it all is love. People aren't making difficult decisions or not for any other reason than love. So that at least is the right foundation. But then the knowledge needs to come on top of it before people can really move forward.

Karen Wylie: Yes, when you said just a minute ago about how much we love when someone comes to us right when they've gotten a diagnosis. It's just so wonderful because then there's so much that can be done to support them or to help them think through how they might need to help their pet be more mobile or blocking the stairs and finding the right sling. There's so many ways that we can help if they look at their care as hospice and animal hospice just as we do with human hospice.

I'm thinking I've not been able to find any numbers recently about animal hospice and how many clients use it or choose it or even know about it. 

Because that kind of information is not being collected by any of the veterinary clinics associated with the various veterinary medical associations. But I do remember a few years ago when I was writing a grant for us, even then it was like 8 or 10-year-old data. Clients were asked if their veterinarian had ever mentioned animal hospice as a possibility, and only 13% said they'd ever heard of it.

Gail Pope: I'm surprised it was as high as 13. If you want my honesty.

Karen Wylie: Yes. I am too and I don't know that they always heard it from their veterinarian or how they would've heard about it. Certainly, it's just really sad because then, of course, we get into a discussion of what constitutes hospice care and in human hospice, it's quite varied.

In the animal world, it seems we have veterinary or medical hospice, which is much more related to evaluating quality of life to determine if euthanasia should be on the table. Then providing the euthanasia itself and often helping in some aftercare decisions like making sure that the pet's body is brought to a crematorium and that sort.

So usually medical or veterinary hospice is a very narrow combination of services. Whereas when you and I talk about animal hospice, we literally are talking about it from the time of diagnosis all the way through.

Gail Pope: I think part of the big problem, and I've always said this, is that it's the word "Hospice". It scares people away. The word "Death", the word "Hospice", "End of Life", it's not something that people want to talk about. When it comes to their animals, I think it's an equal fear, obviously, which is why I like to think of it because this is what we do.

I think of it for myself as, "It's the last chapter of life. It doesn't mean you're dying, it means you're living." And so it's making living the best it can be until you may have to make certain choices towards the end of life.

It's so sweet and simple to look at things that way. It takes all that pressure and fear away. Again, education is so important. Otherwise, fear steps in and if euthanasia for people became as prominent as it is for animals, then heck, don't look at me. It will become very difficult. I think hopefully it's gradually going to switch to the opposite way.

I don't know. It should not be quite so easy to kill any other being to me. The word easy is wrong there. It shouldn't be the given assumption, if you like.

Karen Wylie: Then thinking of medical aid in dying or MAID (M-A-I-D), when human deaths are being reported by each of the 50 states in the US or really Canada and the UK, it's anywhere from 1-4% of human deaths are being chosen medically. 

But that means the other 96-99% of them are considered natural deaths, dying of old age, or dying from a particular disease. Then when we look at our animal end-of-life statistics generally speaking, if an animal is under regular veterinary care as they age and are in the final chapter of their life, 90% of them are being euthanized.

If natural death is fine for humans, why are the numbers so different when our bodies are so similar in terms of being mammals and having the same organs and having the same decline process? 

So we do have unique challenges when it comes to animal hospice.

Gail Pope: That takes us back to the basic problem which actually comes back to the myths, and the main one is the fear of death itself then the fear that it's going to be painful. Those are your two number ones, aren't they?

Karen Wylie: Yes and they just keep thinking if people believe that "Hospice is only for the last days of life" and their medical professional says "I think it's time we consider hospice," No, no, no, no, no. Because hospice means that they're at the end of the road, and as you were saying before, it all comes back to loving the person and not wanting their life to end. So going into hospice just becomes a symbol of life coming to an end and they're just not going to take a step down that road, sadly.

Gail Pope: You know what? It would be interesting to know the statistics for people, not so much animals as you've pointed out they're not keeping those kinds of statistics, but the number of people that are enrolled into the care of hospice and then they actually don't die. 

It's kind of based as a six-month program. But there are a lot of people that sign on to hospice, their medicines are changed, their daily life kind of changes. They don't necessarily go and live in a hospice. They stay at home with visitors. They gradually improve. Their joy for life returns. They go back to work and they do really well. Some live for another year or two, or even more. Others don't live that long but they have a good life for as long as it lasts.

Karen Wylie: Jimmy Carter's the poster child for hospice. I was so thrilled when he chose to go into hospice shortly after his last diagnosis but he was alive for at least another year. Some time between a year after he entered hospice or a year and a half is when he actually died. It's probably because of what you're saying, that he was being supported by so many people.

He was being given— we don't know exactly whether he was getting acupuncture or Reiki or sound therapy or other things. My memory is that he was a, a devout Christian, so he was probably getting some spiritual support. You just don't know what helps people continue living for a longer period of time.

Gail Pope: Exactly. I think the acceptance that we're not trying to fix things anymore. The word cure slides to the side and it's about making life better. So whatever conventional or holistic medicine is being used, there's a change there to make it just flow a little easier. We're not focused on curing anymore. Things start to ease very often, and wow! You get those changes. It can be so wonderful.

Karen Wylie: It can be wonderful. I think perhaps for some people, they never really give up on the potential for cure when their loved one is in hospice care. So when they're offered hospice care, it's like you're giving up on the potential cure even though no one may have presented that there was any cure left.

It's giving up on so many possibilities and certainly giving up on life is how they look at it. Whereas so many people can enjoy the time they have left more fully in hospice care than without. Their loved ones will get support too because there can be respite care from nurses coming in.

Gail Pope: And the same in the animal world too.

Karen Wylie: Yes. That's one of the things with some of our animal hospice group graduates who are geriatric pet sitters and can offer that respite care for geriatric or terminal pets. Because they have a better sense of what to look for, what to monitor.

Gail Pope: Definitely.

Karen Wylie: A lot of people think hospice is really only about the final moments of life, but as we've been talking about it, we're making it clear that it really is not about that. It's about quality of life care, comfort care, family support through the whole journey. It really doesn't stop. For humans, it doesn't stop when the loved one dies.

The local hospice centers here in my area of the Blue Ridge, follow up with the families at certain times: a few days after, a week after, two weeks after. They keep reaching out and they begin providing a different kind of support then in terms of emotional support and referral to for grief support and that kind of thing.

Gail Pope: Yes, I was impressed when my husband Richard died and they continued to contact me afterwards. That was really appreciated. It was really lovely. Really lovely. And of course, Richard became one of the statistics that we were talking about because he refused hospice until, until pretty much a few days before he finally left. But we're all different. We're all different.

Karen Wylie: We're all different. Anytime we bring up his last day, I just smile because he just never gave up.

Gail Pope: No.

Karen Wylie: He never gave up on anything from what you had told me about your life together but that day, you had told me that the hospice doctor had said, "Here's what we can do. Here's some of your options." And he said, "I'll think about it for the next couple weeks and let you know." Then he was gone a few hours later but he wasn't thinking of it that way.

Gail Pope: Exactly. But then, that takes me back years actually, because when you think of it Richard was my partner in BrightHaven for many years. If somebody in those early years had said to either of us, "Oh, you have a hospice," we would have said, "No way. We do not. We're all about looking after senior, special needs, medically challenged animals and making their lives beautiful. We're not about death and dying."

Had we really put it together, we would've realized, but we didn't. We never, ever really did. We were living in the moment and helping our animals be the best they could be, having a living, loving life before they reached the end of it. So we approached the whole thing from a hospice perspective but to me and to Richard, hospice meant death. So we didn't call it that.

Again, education. It was only when I actually really understood what hospice was, it changed my life because then I realized that that's what I was doing. But I don't think Richard ever quite absorbed it. He was like, "Okay, I'm keeping that word over there. I love what we do but let's not think about that."

Karen Wylie: Of course here we name the "The Quality of life Tool" that we use LIVING because that's the goal. It's to live fully as long as possible. So yes, the language matters for all of us in helpful ways - and not so helpful ways.

For a pet owner who is providing hospice care at home for their pet, many of them are doing that and are also saying that they'd like to support their pet dying naturally at home. What would you want a family to know before they commit to a home death so that they're walking in with their eyes open, instead of being confused along the way or being surprised by what the process is like?

Gail Pope: Exactly. That brings us back to the myths, doesn't it? I would want them to know that they should be prepared. They should understand what a normal death looks like because that again is another conversation. Because you could take six people, six animals, all with the same age or with the same illness, and their actual dying process may look different. 

So for me, it was learning more about what is normal in the dying process but balancing that with what is not normal because if something comes up that isn't a normal part of the dying process, then we need to be addressing it and knowing and doing something about it.

For instance, pain is the biggest myth. Pain isn't generally part of the normal dying process. However, pain is very often part of the chronic illness that may have been present. Therefore pain should be controlled. I think once people start to understand things like that, "Oh, okay, so I can be in control."

And we're human, we want to be in control. If I understand what's possible, what's not possible, what's right, what's not, what's normal, what's not, I can step through this with my animal, with my human, and be part of this and let go of some of my fear so that I can be with them. Then for the most part, I think I really don't see fear in my animals as they're approaching end of life. I see acceptance. I see them loving, accepting, being in the moment.

My lesson was to let go of my fear and go with them. So little by little, I wish I could say I was not scared of the dying process, but I don't remember experiencing it. So it's something that I don't know, and so of course there's a fear of how, when, and why, but I don't think animals really have that.

Certainly the hundreds that I've cared for accept death in a very different manner. If they have something acute going on, then obviously that has to be addressed and in some cases euthanasia may be the perfect choice for that animal. Same as for that human. But for the most part, if something happens that isn't part of the normal dying process, we can do something about it.

It's preparation, it's education, it's having someone who can walk alongside you that you can telephone or email and say, "I'm seeing this. Is there something I should do? Is it okay?"

We have our "Quality of Dying Checklist: PEACEFUL", which has been helpful for so many people. That's something to hold onto to help.

Karen Wylie: I have to agree with you that the natural deaths that my pets have had over the years, I think way before the death when they might not have as much energy— maybe a dog can't walk 10 blocks anymore so it has to sit down and after two blocks. There's a little frustration but that little bit of frustration passes when it's realizing as you get older that you can't do all the things as quickly or as long as you may have been able to do when you were 30.

That's what I've seen in my pets that have been moving along toward a natural death, is that they would be experiencing the lessening of energy. The lessening of physical strength, and that can be a little frustrating to them. You can see it in their face. You can see it in their eyes. But at the same time, that's a normal response to have for any of us. That allows them to turn the corner, don't you think? It allows them to then begin accepting what's coming next.

Gail Pope: Definitely, and why doesn't it do that for humans? Back in my 70s, for sure, my energy was starting to slide, as it has now. I don't have the energy to walk the dogs as far as I would have done. I don't have the energy to go out and spend three hours shopping. I don't do all that stuff anymore.

However, it doesn't mean I'm dying. I'm still living. It's just a slightly different, a more beautiful way to look at life and living, and death and dying. They come later. Part of us is dying all the time but part of us is living all the time. It's the same with animals, while they can wag their tails, enjoy treats, have some fun, isn't life beautiful?

Karen Wylie: It is beautiful. I guess it, the only time it isn't beautiful is when you're worrying if that's the last afternoon that you're going to see that. Some of us engage in that too but we should celebrate what we're seeing in front of us.

Gail Pope: Yes, yes.

Karen Wylie: We'll deal with that in another conversation.

Gail Pope: I was going to say we can go down all sorts of different pathways, can't we?

Karen Wylie: We can and we always do. But I guess Gail, if you would say one thing to a pet parent who might be sitting on a diagnosis now, but might be afraid to ask about hospice for their animal, what advice would you give them?

Gail Pope: Be kind to yourself probably comes first. Remember, it is all about love and what you know and applying that into your life. So if someone is facing a difficult situation, then learn what you can. Come to an organization like us and just ask some questions. Just meander through our website and learn.

Just absorb the beautiful lessons that animals teach us as they live their lives, and then they die peacefully in whatever manner. It's what we hope and expect for our humans, so let's learn more about how we can do that for our animals.

Karen Wylie: Absolutely. And we've got so much information on the BrightHaven.org website as well as the BrightPathForPets.com website. We'll list those in the show notes for this episode. We have so much information available for people to learn about it before you need it perhaps or it's there when you need it. So and in all so many episodes, this is episode 75 for us, my dear.

Gail Pope: Wow.

Karen Wylie: I know.

Gail Pope: That's scary.

Karen Wylie: It's like a whole year and a half now and we haven't run out of things to talk about.

Gail Pope: I don't think I ever will.

Karen Wylie: I don't think you ever will either. Oh, goodness. I guess we should bring this conversation to a close. I guess one thing I'd like people to take away from today's conversation is that hospice is not a countdown to the death of your loved one, whether your human loved one or your animal loved one.

So it's not something to turn to only when there's nothing left to do. I'd encourage you to turn toward it because there's a lot of help that can be provided from us, from animal hospice practitioners, from veterinarians who are specialists in the area of hospice. There's a lot of people out there if you start looking for them.

And as early as your diagnosis, it can often give you many more weeks and months of comfort and connection and peace that you didn't even know was possible. Gail, would you like to say something before we close?

Gail Pope: How about it's all about love? I think that fits, don't you?

Karen Wylie: I do. I think it definitely fits. It's our reason to choose it. It's our reason that we're afraid of it.

Gail Pope: Yes, it's all part of it. You can put the Ls in.

Karen Wylie: It's all about love.

Gail Pope: L and L, love and learning. How about that? L and L.

Karen Wylie: Absolutely. All right. Thank you for being with us for this conversation of Peace of Mind for Pet Parents, and we hope you'll be with us again next week.

Bye-bye now.

Gail Pope: I hope so too. Goodbye.