eileenanddogs

Create a Custom Quality of Life Scale for Your Dog

If you create a scale for your dog, please do it in consultation with your vet. I’m providing a simple form on Google Sheets and sharing my own experience, not medical advice.

Template for custom quality of life scale or symptom tracker

You know generally what’s coming when we talk about quality of life.

In this case, the news is that Zani is terminally ill.

In early August, she started to cough. Clara and my friend’s dog had both just suffered a respiratory infection in sequence, so I assumed it was the same thing, but it didn’t go away. I talked to my vet and she prescribed Zani some antibiotics. About two weeks later Zani started having a GI problem. I talked to the vet and we discussed some options, including a minor surgical procedure. But with her ongoing respiratory problem, she didn’t want to put her under unless she had to, and the condition did seem to stabilize.

Then in the first week of September, something started changing in Zani’s right eye. She already had keratoconjunctivitis sicca (KCS) in that eye—but this was new and different, and the vet said to come right in. There was some color change on the side of her eye. She also noticed swollen mandibular lymph nodes, which I had not. She performed a chest X-ray and Zani’s lungs were full of nodules. These conditions, along with the eye and GI problem, spelled probable lymphoma or one of the deadly fungal diseases dogs can get here in Arkansas. The eye problem is likely caused by an orbital tumor (tumor behind the eye). The symptoms between the fungal infection and lymphoma are oddly similar. The fungal test came up negative.

I wanted to keep my options open in case, for some wild reason, chemotherapy would be appropriate, so they did a needle aspiration biopsy to confirm. But it came back negative for anything—cancer cells or infection. Yet this stuff was growing inside her.

So Zani has something that is very likely cancer, and probably lymphoma, but not definitively diagnosed. The other affected areas of her body would be difficult, impossible, or painful to biopsy. Behind her eye? No thanks. Rectal tissue, lots of bleeding and discomfort, and the area is already being stressed. An ultrasound-guided needle biopsy of her lungs would still be a shot in the dark, trying to hit a nodule and gather enough cells. And it would be risky to anesthetize her for any of this. But these locations: lungs, GI system, and eyes are typical places for lymphoma to develop.

We are proceeding as if it were lymphoma, which is actually the best-case scenario at this point. But it’s not a good prognosis, especially because of the eye involvement. Chemo is generally not as hard on dogs as it is on people, and there are a lot of choices for lymphoma, but it’s still not necessarily easy. I wasn’t crazy about the idea even when it was on the table, and without a definitive diagnosis, the vet and I agreed not to go that route, Zani is getting palliative care: steroids. If what she has is lymphoma, prednisone may even create a remission.

She loves being outdoors

By the way, Zani has no clue how sick she is. She has shown no evidence of pain (the vet agrees). Her appetite has never flagged; she hasn’t had diarrhea. She is doing her usual activities, only at a lower energy level than usual. And while we waited for the results of the fungal test, which seemed to take forever, she got a dexamethasone shot, which took away her coughing and made her very peppy indeed.

An Individualized Quality of Life Scale

Inspired by the two major quality of life scales available online (Pawspice HHHHHMM Scale and Journeyspet), and my friend Blanche Axton’s excellent methods of tracking symptoms and behavior in her dogs, I decided to create a custom quality of life scale for Zani using Google Sheets. Her situation is complex with a lot of factors, but I realized some of them were quantifiable.

You can do this, too, should you need to. Here is my Google sheet: it is shareable. You can make a copy and customize it, or use the idea to make a scale that suits your needs better.

One of the reasons I’m doing this is that I know how badly I have been misled when I haven’t used any recorded observations over time.

I’ve written previously about the tragic death of my cat Alex. What I didn’t mention is that as Alex wasted away with what turned out to be stomach cancer, I did not perceive how much weight he was losing. I saw that he was gaunt, but many days I convinced myself he was “better” and gaining again. (I didn’t have a scale at the time.)

I never want to do that to an animal again. I know a little more about combatting biases now, 20+ years later. I will not let an animal waste away, in pain, as he doubtless was. One ultrasound would have told us what was happening, but those machines were rarer in general practices back in those days.

So I have been thinking about the ways I can help make sure Zani doesn’t suffer, that nothing evades my gaze because of hopes. And I’ve talked to my vet about all her symptoms and what to watch for.

I am shocked and heartbroken, but this is something I can do to help Zani, and possibly some other people and animals out there.

What the standard quality of life scales I’ve seen neglect to discuss is the many ways you can actually measure changes, rather than assigning a numerical score the best you can.

Some Standard Metrics for Quality of Life

The combined issues from the two QOL scales I know are pain, appetite/hunger, thirst/hydration, hygiene, happiness, mobility, respiration, sociability, and “more good days than bad.” (I reworded these a little.) One of the scales also includes two categories scored for the human: uncertainty about the condition of the animal, and the stress of caregiving. I probably won’t include categories for those last two, though I am grateful they are included. I will also not have a row for “more good days than bad,” since I will score every day and it doesn’t need to be a separate row.

We’re still doing our exercises

Zani’s Individual Quality of Life Issues

The following are Zani’s unique issues that are variants on or additions to the basics such as breathing, eating, and not being in pain. Some of them, such as mental health, are considerations in their own right. Others, such as lymph node size, are symptoms of bigger issues. I’m going to share my thoughts on them here.

  • Mental health. Zani is sound phobic, which is well controlled with meds and counterconditioning (check out the video below where she gets on the scale—that beep used to terrify her). In the past, she had almost a year where she also had generalized anxiety and panic attacks. So I will be watching for any precursors or wobbliness in her mental health.
  • Weight. I will weigh her at least every other day. Right now she is gaining. Even before the prednisone, her appetite was excellent.
Zani stations to be weighed
  • Respiration. I have been counting Zani’s respiration since the lung problems started because her breathing was noticeably fast and labored. Here’s a tip: rather than watching your dog’s chest rise and fall while simultaneously checking a stopwatch app, or setting a time with a ding (we avoid dings around here), just take a video of your dog that is an exact length and count at your leisure as you watch the video. I usually use 15 seconds, then multiply the number of full breaths by four. (There are also dedicated apps for this purpose.)
  • Eye with the tumor: appearance. Is the appearance changing? Any abnormal discharge? Her “normal” discharge with that eye is already pretty weird because of KCS and its treatment. Is her eye more or less exophthalmic? Less turned in the socket?
  • Eye with the tumor: irritation. Is it bothering her? Is she pawing at it or trying to wipe it on the grass or upholstery? (She has not done this at all so far.) Orbital tumors are often not painful.
  • Rectal prolapse: appearance. How long after defecation before the tissue retracts?
  • Rectal prolapse: irritation. Is it bothering her? She has never tried to scoot on the ground after it happens. She turned and tried to investigate it a couple of times early on, but I haven’t seen her do that since the beginning. So far it hasn’t been tender when I’ve cleaned it up for her.
  • General GI system. Any blood when I wipe her butt? Abdominal tenderness?
  • Repeated defecation. This is probably tenesmus, the urge to defecate even when bowels are empty. I’m treating repeated straining as a bad sign because it may both be symptomatic of something bad happening internally and also exacerbate the prolapse. But she has seemed to learn when she is done, even though the prolapse must complicate the sensations.
  • Stools. Look for constipation, diarrhea, blood in stool. So far her poops have been great.
  • Vomiting. None so far.
  • Her right mandibular lymph node size. This one is tough for me, but mostly because her nodes are not all that swollen compared to many dogs with lymphoma. I think I will be able to tell if they start to swell, though.
  • Her left mandibular lymph node size.
  • All nodes. Check for anything new.
  • Likelihood of a sudden adverse event with her GI system. See next entry.
  • Likelihood of a sudden adverse event with her eye. I’m using separate categories for these sudden adverse events, separate from the individual tracking of these areas. I don’t want to forget that even if I envision a slow, measurable decline, Zani has at least two conditions that could cause a sudden medical emergency.

New Symptoms to Watch For

  • Limping. This could indicate bone marrow involvement.
  • Excessive balance problems (beyond what is normal for her, due to her spinal cord trauma), seizures, or paralysis. Changes here could indicate central nervous system involvement. That’s my biggest worry because of the orbital tumor.

But in the meantime, her balance and coordination are looking great for her!

See the “Exercise and entertainment” video below for a live demo of backing to the platform

Possible Med Side Effects

Prednisone can cause quality of life issues itself. These are some of the things I’m watching for.

  • Behavior changes such as depression or aggression
  • Restlessness
  • Panting
  • Nausea or other GI problems

Scoring

This is the “Second breakfast is late!” look

Some of the scoring will be counterintuitive any way you look at it. That’s because we naturally want to give high numerical scores to intensity, whether they are positive or negative indicators. But we can’t have an additive system where happiness is a 10 on a scale of 0 to 10 and also extreme pain is a 10 on a scale of 0 to 10. One of them is going to have to be scored in the other direction. So a certain number of categories will be scored counterintuitively. I went for high scores for intense good indicators. Which means on the pain scale, 10 means complete lack of pain.

Also, there will be factors that have actual numerical metrics, such as weight and respiration. I may write a couple formulae to convert the numbers into the 0–10 system. At the very least I’ll write a conversion table.

I’m sharing these thoughts for people who are in the sad position of doing this themselves, but I’m not going to publish my exact scoring system. I don’t think it’s a good idea for anyone to copy my sheet exactly. But above are the concerns I’ll take into account.

I have, however, created a downloadable Google sheet that has a basic setup for symptom tracking. You can view the sheet and make a copy for yourself to edit as you please, putting in the symptoms you need to track for your dog. Be sure to check with your vet about what will be best to track for your dog. I’m sure there are people out there who can make a more sophisticated numerical tracking system. My goal here is to plant the idea of tracking symptoms as objectively as we can with the purpose of noting trends. We can do this successfully even if we have to make a lot of approximations.

Tracking such as this is useful for any dog with a chronic condition. Its use is not limited to dogs who have terminal conditions. For a dog with a chronic, non-terminal condition, the score can be used to determine when a vet visit is in order to discuss a change in treatment or when it’s time for a planned intervention.

Exercise and entertainment

Epilogue

Part of my reason for writing this is therapy. It lets me feel a little bit of control of the situation. But to be honest, I don’t think I will be using my chart for long. Both the GI problem and the eye problem could take a turn for the worse very fast. Her eye has improved from the prednisone Zani is taking now. But eye involvement worsens the prognosis for dogs with lymphoma. And an eyeball that is turning in the socket because of pressure from a growing tumor is going to cause problems sooner rather than later.

Please keep my little dog in your thoughts. This post may come off as cool or detached. Concentrating on symptoms and tracking and making each day a great one for her is how I’m coping right now. But don’t think for one minute that I am not collapsing on the inside at the thought of losing my sweet friend.

Fun in the stump

Copyright 2020 Eileen Anderson

35 thoughts on “Create a Custom Quality of Life Scale for Your Dog

  1. Dear Eileen, I’m so sorry about Zani’s diagnosis. One of my dogs, Kerfuffle, has multicentric lymphoma and came out of remission last week, so I’ve been having similar conversations with myself about quality of life. I’ve enjoyed reading about your journey with Zani over the years; hope you have lots of good days left. I will definitely keep you both in my thoughts, and Kerfuffle sends lymphoma-fighting ninja superpowers to Zani.

    1. Dear Jill,
      Thank you for the kind words and especially for the lymphoma-fighting ninja superpowers! Best wishes for more good times with Kerfluffle (great name, by the way!).

      Hugs,
      Eileen

  2. I am so sorry. I too know that urge to find something, anything, that you can control when facing something devastating. And I know that you will be making every moment of the time you have left as happy and stress free for Zara as you possibly can. These twilight times are filled with sadness but also threaded with golden moments – I hope both of you have many such moments together still to come.

    And thank you for the spreadsheet. Poppy is coping well with liver failure at the moment – better than I dared to hope when she was desperately ill in January – but I know it is life limiting. The time for hard decisions is not yet, but it is looming in our future, and it hurts. Anything that helps to make the right decision at the right time will help to ease the stress of the if-onlys and the what-ifs.

    Take care of yourself as well as Zara – you are carrying all the fear and anxiety for her, and that is a heavy burden.

    1. Frances,
      Thank you for your kind and thoughtful words. Best wishes to you and Poppy and I hope she continues to do well.

      Eileen

  3. I am so sorry, Eileen. We lost both of our dogs within 2 weeks of one another about 4 weeks ago now and I’m still crying over them. Now I’m crying for you and Zani. May your time for grief be short and your time for treasured memories be long.

    1. Oh Jan, I’m so sorry for such a terrible loss. My heart goes out to you. Thank you for being generous with comments to me.

      Hugs,
      Eileen

  4. You are both in my thoughts during these times. Enjoy each day with gratitude and grace… although it’s obvious you know that already. ((HUGS)) xx ❤️❤️

  5. Hi Eileen
    I’m so sorry for you and Zani 🤞🤞🤞for the best for her 💝

    Are you sure that it is the lymph nodes that is swollen?

    2 of my Bouviers got enlarged salivary glands the submanibularis!…as big as chicken eggs and it affected the respiration the diagnosis was Sialadenosis, only described in a few cases in the world, it was treated with Phenemal …. after about 48 hours the swelling was gone no one knows why it works but it does! … . In one case it affected the one eye too.

    Has she been thoroughly checked for Hypothyroidism?

    All the best to Zani from Iben / Denmark 💝

    https://www.veterinarypracticenews.com/rare-salivary-gland-conditions/

    1. Hi Iben! I’m not confident in my own ability to distinguish lymph nodes from salivary glands, but I am confident in my vet. Thank you for this information; it is fascinating. Zani has been checked (the whole battery) for hypo-T; I’ve had two dogs who had it.

      If you interested and don’t know about it, look up histoplasmosis in dogs. It’s fairly common in this area of the US. It also has symptoms that are strikingly similar to lymphoma. It’s been a real education, just one I’d rather not have so close to home.

      I’m so glad your Bouviers were cured.

      Eileen

  6. Sorry I sent without the rest!!

    It may or may not be any use but just adding what I have used to keep quick, simple and easy to read / use assessments that allow for a general assessment and overall score.

    For Zani or any other dog you could include sections for scoring on a 1-10 basis for things like

    Mobility
    Just noting how mobile she is, whether she’s been less keen to get up and move around, any stiffness of difficulty getting up and down areas that don’t normally bother her / any sudden improvement and hopping up onto the sofa.

    Diet and Nutrition
    Note down simple score based on how well she’s eaten, what she ates, if she’s not had much appetite or been ravenous etc.

    Sleep and resting
    Self explanatory but it can be helpful to make a note of how well she sleeps, if its restful and anywhere she’s preferring to be for sleep. Often medication will affect sleep and can affect mobility so it’s handy to have a simple chart that lets you look at a fuller picture in one clean quick sweep

    Pain and any other medication
    It will be harder and not generally accurate when pain relief is being given it’s still helpful to note and keep tabs because excessive sleepiness, lack of energy and wanting to do less and just sleep more can all just be part and parcel of side effects from medication. In some cases it could be reassuring that she’s at least getting a good sleep.

    Peeing and Pooping
    Again self explanatory but meds can cause all sorts of problem and wreak havoc with bowels whether human or doggo!!

    Off the top I think that’s probably all that could be helpful to just score up and keep tabs on.

    Lastly and it is the dreaded one I know but one thing others find helpful is to give thought now what point you feel is when you need to maybe let her go For example not able to get upstairs, having problems and unable to eat / can’t or won’t go outside etc.

    If you give that horrible thought some thought now, should the time come and you realise it’s the point you had previously decided would be when it’s time to let go.

    We’re not in the right frame of mind when it’s happening but if we’ve at least had chance to really give it thought and rationally, makes any final step not easier but less traumatic.

    1. Hi Auntysocial,
      Thank you, these are great suggestions! It really does help to keep track, doesn’t it?
      With Zani, I know pretty much exactly when my point will be, since her symptoms are so overt. But then, things sometimes jump out of the woodwork, too. Thank you again for the thoughtful suggestions.

      Eileen

  7. Dear Eileen,

    I’m really sorry to read about Zani’s condition and I hope you’ll still have many days together, full of fun and love.

    Your scientific approach of using standard metrics to define Zani’s personal quality of life not only is a brilliant idea but I’m sure this could be of great help to many people. Thank you for sharing your Google sheet!

    You are very brave and I can’t find any evidence for you being detached and cool. Your engagement for Zani and her health can hardly be anything else than love.

    Thinking of you and Zani and wishing you all the best
    Heidrun

    1. Heidrun, thank you for your kind, kind words. I’m glad my feelings for Zani come through even though I don’t talk much about them directly.

      Hugs,
      Eileen

  8. She is a delightful wee dog and you are the most dedicated of caregivers. You are both in my thoughts this evening,
    Kind regards,
    Patricia

  9. This is wonderful, Eileen. I like data, too. Your chart and your list and your thoughts are excellent. Thank you for putting this together. I will bookMark it. And put it into my blog in a couple of places.

    Your experience with your cat and your dog in various ways reflect what I’ve been through with cancer that might’ve been lymphoma or not in two of my dogs. I kick myself, why didn’t I keep paying attention to the weight, for example. After I took a couple of weights because I thought he might be looking a little thin. But his weight seemed normal to what I remembered it. And he’d been into the vet a couple of times recently for other issues (that in retrospect might or might not have been related to the cancer) and I think they had Once said that his weight was a little low, but that was about it nothing to worry about.
    It is tough, because I always want to second-guess and kick myself. But, as I used to tell my dad, when he would go into a frenzy of feeling guilty about something current or in the past, you do your best with what you know at that time. That’s true for everyone.
    Thanks again for this, and best wishes for you and your little dog.

    1. You are exactly right. We do the best with what we know at the time. Thank you for those kind words, and I hope you can be kind to yourself as well.

      Eileen

  10. Thinking of you Eileen, and great that you have found a way to make objective decisions about Zani’s care. It won’t make knowing the ‘right time’ any easier. Enjoy each day that you can together. Best wishes to you both.

  11. Eileen, you are such a great guide in all things dog. Thank you for all you share.
    Sending lots of positive vibes to Zani and all your household.
    Every day with our loved ones is a ‘good’ day, even when the day holds ‘bad’ times. I know that won’t always be true, but at least for now, that’s what I tell myself and our very old dog, Tiger 🙂 Today is good.
    Very best wishes, Amanda

  12. Oh Eileen – so sorry to hear Zani’s prognosis. Love that little spunk from afar. As long as her appetite and GI tract can tolerate it, who says steak and clotted cream (or whatever her big little heart desires) cannot be for breakfast? We wish you many golden moments in the time Zani has left. And a scritch for Clara too.

  13. So sorry to hear about lovely Zani, followed you for quite awhile now and feel I know your dogs quite well, thank you for sharing this.

  14. Oh I am so sorry to read about your sweet Zani!! I feel like I know her through reading your blog for so long!!! The love you have for her definitely was coming through in this post!!!! You are the best Mom to her!! Enjoy all the moments you have!! So so sorry!!!

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