Do we need pet care advocates?

In the depth of my despair when Apollo was dying, the medical resident at the specialty hospital made a comment I will never forget.

He was dying of a blood clot, a sequelae of hyperthyroidism and heart disease. I was in shambles, having come home from the gym to find him immobile on the couch, and rushed in straightaway, sweaty and spandex-y. I scribbled his medical history as quickly as I could, which the resident pored over with her intern as I sat in the room planning to say goodbye. I knew at that point it was coming, I was just waiting for confirmation of the diagnosis.

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I had checked ‘yes’ to allergies, in the interest of being thorough.

“What allergies?” the resident asked.

“Food allergies,” I said. “Chicken.”

She paused, and shared a knowing glance with the intern. “And how do you know this?”

I blinked. “I’m sorry?”

“How do you know he has food allergies? Did you just assume, or did you actually test him?”

“I….I did an elimination diet, 10 weeks…not the full 12…. but it was obvious by that point,” I stammered, though what I really wanted to say is “WHAT THE HECK (ok maybe another word) DOES THAT HAVE TO DO WITH THE PROBLEM AT HAND?? WHO CARES HOW HE WAS DIAGNOSED WITH AN UNRELATED MANAGED CHRONIC CONDITION A DECADE AGO??”

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But you know, I just sat there because what are you going to do.

OK sure, let's talk more about Hills z/d and then can you please get this cat some morphine?

OK sure, let’s talk more about Hills z/d and then can you please get this cat some morphine?

Now, I understand that a teaching hospital is going to teach, but from the patient perspective I suppose I would appreciate the teaching being limited to the issue at hand instead of using an emergency cardiac event to make a point on dermatology. I don’t know if it was that, or the way she asked the question as if she were sure I was going to give the wrong answer, that rubbed me the wrong way. I also had to tell her not once but twice that I didn’t want to hospitalize him on the off chance his clot might dissolve enough to give us another month at home. We didn’t hit it off.

Fortunately I didn’t see her after that and was turned over to the lovely cardiologist who looked and talked like Oberyn Martell and understood when I said, “Please confirm my suspicion so I can give him a peaceful goodbye at home”, but it really reminded me, from the other side of the table, how hard it is to be a patient advocate for our pets. I knew what I was doing and I still had to push a little. It was a lonely experience.

It’s even worse in human medicine, as this ER physician who was hit by a car will attest to. Without someone who knows what’s going on to oversee the process and keep the focus on the overall wellbeing of the patient, things fall through the cracks. Flustered and underinformed family members get confused. Specialists focus on this problem or that problem and not the patient. How can we do better?

Um, no, actually.

Um, no, actually.

In human medicine, many hospitals now have designated patient advocates who serve as an invaluable liaison between a family and a healthcare provider. In veterinary medicine, it’s not something I’ve ever heard of, so we’re stuck with ourselves, the vet clinic, or the internet to help us make sense of complicated issues, to understand why the vet wants to do this or that and to empower clients to make informed decisions, including “No.” It’s not the ideal system, clearly.

I wonder if people would benefit from a neutral third party patient advocate group in veterinary medicine. I think things are only going to get more complicated from here on out, and as both a patient and a vet I think that sort of thing could only help. Food for thought.

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Have you ever felt confused and not sure how to proceed with your pet? Would it have been helpful to have a pet care advocate to serve as a liaison?

 

Filed: Blog, Daily Life, Euthanasia/Hospice, Health, Musings, Picks of the Litter Tagged: ,
  • http://www.catster.com/ JaneA Kelley

    I think this could be a fantastic idea! In my work, I hear from people every day who are overwhelmed and terrified by their pet’s diagnosis and have no idea what to do or which way to go to manage their pet’s care. Sometimes they have a bad feeling about the advice their vet gave them or the manner in which the vet approached their pet’s illness. Sometimes they hear a word like diabetes or Cushing’s Disease, or even cancer, and all they can think of is horror stories and endless suffering, a life changed forever for the worse — both theirs and their pet’s. When you’re in an overwhelmed and incredibly vulnerable state, you need someone who can work with you to help you understand your pet’s illness and treatment options (and sometimes just to provide emotional support).

    When you’re a vet and maybe you’re not used to dealing with people who are overwhelmed by their pet’s diagnosis, maybe you need someone who can explain to your client in “plain English” what that means. And just from my own experience with veterinarians and my own pets, I know that vets can be emotionally overwhelmed sometimes, too, and sometimes they just have to get into a “strictly business” state and at times like this they can appear to lack empathy for their client or their patient.

    Any time there’s someone who can act as a go-between and make sure that both human parties understand the situation and that all parties (including the pets, of course) get the best possible care, including pain management or palliative care/end-of-life care, that person can ensure the best and most humane option and provide the emotional support needed by a panicked or bereaved client.

    In short: I’m all for pet care advocates!

    • http://www.pawcurious.com Dr. V

      I was just trying to mull over where this would be applicable, like who would want to have someone like this in their employ. A large specialty hospital, yes, and/or maybe a pet insurance company. Tons of truth in all you said above!

      • http://www.catster.com/ JaneA Kelley

        An emergency clinic might be a good place to have a pet care advocate, too.

        I actually do work for a pet insurance company, currently in customer service, and a good part of my day’s calls can be just about providing emotional support for overwhelmed pet “owners” (I hate using the word “owner” for a person who views their pet as part of their family) and letting them talk about their mixed feelings and experiences with vets and their feelings about their pet’s illness. I like to think the people I talk to benefit from the fact that I have experienced some of these overwhelming situations and I can understand what they’re going through.

        • Nubia Rojas-Blas

          In the ER is a great place for something like this. I recently had a scare with my epileptic kitty that had my husband and I rushing over last week. She’s doing better now (yay) but that night none of us was sure she was going to get up in the morning. The options I was presented with ran between $500 to $1500, and they were super understanding and sweet, but I did have to make a choice, which was hard to do under that “if I make the wrong choice she’ll die” cloud. I’ve worked in animal care, shelters and clinics, so I had some background to work with, but having my husband there to steady me and talk with me to sort through my experiences to make an informed choice together was invaluable. That visit would have been a million times harder without him, and if I had had to go there alone, it would’ve been amazing to have someone to process the options and just sit with.

  • http://www.championofmyheart.com ChampionofmyHeart

    Interesting idea. Once for Lilly, I was trying to make a big / expensive treatment decision about how long to try a new chemo med. I was having a hard time getting a straight answer from the specialist because the answers was pretty much, “I don’t know.” Later when I got fussy about it, one of the technicians told me that it “wasn’t the specialists ‘style’ to coddle patients.” I don’t remember what I actually said in reply, but I was thinking, “I’m not asking for a HUG. I’m asking for help making a clinical decision.” Maybe it would have helped to have someone in the middle to clarify my needs and at least get some some info upon which to make a good decision.

    • http://www.pawcurious.com Dr. V

      I feel like a lot of people mistake “explaining things in a concise way a patient can understand”, ie effective client communication, with “coddling” and that is a shame.

  • Summer

    I think it’s a brilliant idea. There are many times as a tech, that I see owners’ eyes glaze over once they have been given a serious diagnosis. Not even necessarily a terminal one… it’s just that they are in their own head, trying to assimilate the scary information. I always offer them a pad of paper and pen, so they can write down what they are hearing, because I know later on they will get home and not remember half of what was said!

    There have been many articles written about when we go to doctors appointments, to take someone else as an advocate. The advocate can listen, take notes and have the list of questions, because the patient often forgets or is too nervous to follow through.
    I have offered to be the advocate for human friends, and for when they take their pets to specialist appointments. It’s easier when you are a step away from the emotional nature of the situation to stay focused and pay attention.

    • http://www.pawcurious.com Dr. V

      I think having someone *there* is definitely key, and challenging these days, but I bet having an advocate Skyped in could work as well. Just thinking out loud…

      • Summer

        The Skype idea is intriguing…

  • Megan Taliaferro

    Great idea! I also think all of us vets need to take a moment sometimes and realize that even though it’s the 5th time that week we’ve diagnosed cancer or diabetes, it’s the FIRST time for that particular pet and that particular family. What is a ‘routine’ diagnosis for us is never a ‘routine’ thing for our clients. Every so often I’ll be rolling along with my standard ‘cushings’ speech and I’ll look, really look, into my client’s eyes and see that they’re overwhelmed and shutting down. After a bad diagnosis I often tell my clients to go home, take a moment to recoup, then call me back the next day to discuss it further. (obviously this wouldn’t work in an er situation)

    • http://www.pawcurious.com Dr. V

      That’s a great idea. So often people feel like they can’t call back to talk about things more once they’ve had a chance to digest the information.

    • VetChangesWorld

      Completely agree. There’s some science behind why this happens to people and why giving them time works. I wrote a bit about it for a guest blog recently. I try and find reliable resources to refer them too as well, so they can see that what I’m saying is what is generally recommended.

  • jana rade

    Very interesting issue to bring up. I almost always consult with more than one veterinarian when dealing with a serious issue.

    • VetChangesWorld

      As a vet when we’re dealing with a difficult or complicate case I always reach out to other veterinarians as well to make sure we’re on the right track (doctors at the Mayo Clinic do this too). My clients seem to appreciate getting more minds in on the process too.

  • VetChangesWorld

    As a veterinary assistant I definitely acted as such when they saw the doctor who gave them total information overload. Now as a vet I feel like I act as that person when my patients receive care at a specialist’s office. I think informally a lot of people do that by trying to double check with someone they know in the profession (if they’re fortunate enough to know someone).

    I think clients would appreciate someone in that role. One might ask who would pay for that person’s services, but if they help increase people’s comfort with the recommendations they’re being given, maybe it would pay for itself in terms of better patient care and compliance.

    • http://www.pawcurious.com Dr. V

      It seems that as an emerging field in human medicine, who pays for it is up in the air. Some hospitals retain one on staff, which makes sense on that scale; other times it’s insurance who pays, or less commonly the individual patient (though that is probably the least likely scenario in vet med where cost is already an issue.)

  • http://prconnections.net/ mihaela_v

    This reminds me of a recent experience with a friend who hired a doula when she gave birth. In situations when you are scared and in pain (physical and/or emotional) it helps a lot to have someone who can not only keep calm, but “knows the ropes” and can negotiate the system for you.

    In my uninformed idealistic opinion I think doctors should be patient advocates, and I have been lucky to work with doctors (both for humans and cats) who were, but I do believe that, especially in emergency situations, a dedicated patient advocate would be very helpful.

    • http://www.pawcurious.com Dr. V

      Absolutely one would hope the medical staff would be the advocate; but being realistic and reading the comments here, it doesn’t always happen. I think there’s an element of mistrust there too sometimes.

  • Ingrid King

    I’ve served as patient advocate for some of my clients and readers, and the feedback I’m getting has been that the service has been invaluable. From interpreting “veterinary speak” to helping them sort through treatment options, advocating for a second opinion when something just doesn’t “seem right” with what they’ve been told, finding alternative options for treatment, and even assisting with finding ways to pay for veterinary treatments, I’ve been able to help them navigate through the challenges of dealing with a very sick pet. I believe that as veterinary medicine becomes more advanced every day, there will be more of a need for this type of service.

    As for who’s paying for this service, in my case, it’s the client, but I could also see a future where veterinary hospitals employ patient advocates. I could especially see this for large specialty practices and emergency clinics.

    • http://www.pawcurious.com Dr. V

      Ingrid, that is so wonderful. I would love to hear more about how you fell into offering this kind of service and how it works for you.

      • Ingrid King

        I offer the service as part of my other consulting services. I knew I was on to something when I would do this for friends who had sick pets, and they kept telling me I should do it as a business. I think in my years of working in veterinary clinics, I gained a thorough understanding of pets’ and owners’ needs in what, as you well know, can often be a stressful and emotionally challenging environment.

        I always felt that those of us who work(ed) in the veterinary profession sometimes assume that clients know more than they really do. I remember frequently being surprised that even physicians needed a lot of explanation and “hand holding” when it came to their sick pets.

  • Dar

    This is greatly needed in some way, but how to get there? My husband is a physician and I was a director of Interventional Radiology for 20 yrs so we understand medicine. What my personal experience with Veterinarians has been is that they have a protocol for each illness and that’s it. They do not acknowledge that my cat was born feral, is a high stress cat and has other health issues. Your cat has “fill-in-the-blank” and this is what we do. I had one vet slam his pen down and roll his eyes when I told him I was trying to get my cystitis cat on more canned food rather than dry to increase his fluid intake! He wanted to give me a bag of dry RX food and that’s it, no other solutions. My problem is that I do understand the medical side/terminology of the issue, but it’s difficult to ask the vet “What are my treatment options”. I have a wonderful Alternative Veterinarian that was a regular vet for 18 yrs prior. She has been my pets advocate in helping me know what treatments are available and what is RIGHT FOR MY INDIVIDUAL PET. It’s not a one size fits all in any type of medicine. Thank you for bringing up issues that need to be shared.

    • http://www.pawcurious.com Dr. V

      I’m so sorry you have had poor experiences! Sounds like part of it was a flat out philosophy/personality mismatch in addition to the communication issues, so I’m so glad to hear you found a veterinarian who is a better fit for your family!

  • Jeanne MacEwen King

    Funny, I’m not great at advocating for myself, but my pets I will push for. My Terv was just about a year old and I came home at lunch to a couple puddles of bile-like vomit on the kitchen floor and the dog nowhere to be found. He was upstairs in the bedroom, wouldn’t come when called, didn’t get up to greet me and I got no response when I asked if he wanted to go for a ride (I didn’t mention it was to the vet). When I checked, his gums were gray. When I explained to the vet what was going on, she went through the usual questions and asked if there was anything he could have gotten into, etc. When I said no, there was no sign of that, she just looked at me and said “sometimes dogs throw up”. No sh*t lady, I’ve been around dogs all my life. Throwing up doesn’t bother me, but the rest of the symptoms scared me. She off-handedly mentioned that they could do bloodwork, but that it was expensive and would take a little time and made it sound like it would be a waste. I told her to do it and she kind of rolled her eyes at me, but took him in the back. She came back a little bit later, said his liver enzymes were way out of whack and that he seemed to be dehydrated. Yeah, I said there was something wrong. They kept him over night, gave him fluids, put him on a special diet for a month and tested him again. He’s been fine ever since. But what if I had just accepted “sometimes dogs throw up”?