Working on the Treatment Team
Your role as a caregiver
VHUP’s written materials and information on several other teaching hospitals’ web sites discuss the idea that the owner is part of the treatment team. What does this mean for you?
Most importantly, you need to bring your dog for visits as scheduled and administer medications as required. Your other tasks? To determine how to get what you need from the treatment setting you have selected; to observe your dog and inform the professional caregivers; to follow the instructions for home care; and always, always to question until you understand and are satisfied with the answers you receive.
Observing and Informing
As discussed in Chapter 5, your role as the recorder and reporter of data is a critical one. You must give your dog’s treatment team all the help you can. Your vet, canine cancer specialist, or hospital oncology department sees many patients each day and won’t remember the details of your dog’s treatment status from week to week. They can evaluate how your dog looks at the time of each appointment and can check his blood, lymph nodes, spleen and other organs. But they don’t see your dog at home, and your dog can’t talk to them. The most important time in your dog’s life is the 6 days and 23 hours each week that your dog is at home with you, not the hour or so your dog is at the oncology appointment. The professional caregivers need to know how your dog spent that time, and you are the person who has to provide these data.
In the first months of Berry’s treatment, we kept a home diary of medications given, drug reactions and side effects, eating and elimination behavior, and general demeanor. This way we gathered good data for Berry’s professional caregivers and documented that, little by little, his health and quality of life were improving. For each visit to VHUP, we also prepared the summary form described in Chapter 3 that discussed our dog’s general health since his last visit, the expected drug treatment for that week, and any questions we had. The form helped ensure that all the relevant information was available to everyone who saw Berry each week. It also helped us formulate our questions in advance, remember to ask them, and be sure to get a clear answer to each one.
If you believe you are seeing behavior changes – lethargy, less appetite or diminished interest in life in general – if your dog seems "off" to you at home -- stand your ground if the vet tells you your dog seemed fine, or even energized, during the appointment. It was our experience that Berry always put out extra energy while he was at VHUP. Whether this was the result of the stimulating waiting area packed with unfamiliar dogs (and cats!), or his excitement over seeing his friends upstairs in Oncology, what Oncology saw was sometimes not the "real" dog. A specific and compelling example: in the last two months of his life, Berry always seemed more lively – and therefore in better overall health -- to the VHUP Oncology staff than he did to us at home. We believed he was failing because we were observing Berry’s diminished activity and interest in everyday life. In fact, our observations were correct – Berry was in a slow but steady decline even though the tests performed at VHUP did not conclusively "measure" this change until the last two weeks of Berry’s life.
You also need to ask lots and lots and lots of questions. First, you must be sure you really understand what the professionals on the treatment team are telling you about your dog’s overall diagnosis and condition at each treatment visit. This is essential for you to make informed decisions about whether or not to perform tests or continue specific treatment. Second, you must be sure you understand all of the drug-related information – what kind of reactions or side effects may occur and when; what medications you are to administer and when; and under what circumstances you should seek emergency care. Finally, at crisis points in your dog’s treatment, you need to be sure you understand the full array of treatment choices and the implications of each. If you don’t understand an answer you are given, ask to have it repeated or rephrased until you do understand. A good way to test your understanding: repeat back to the doctors what you think they have just told you.
Your failure to grasp all this new information immediately isn’t a shortcoming on your part. You are in a learning process, and you are being educated in part by doctors who are so adept with the subject matter that it may be hard for them to bring it to the new client’s level. For us, as Berry’s treatment progressed, it became easier to add new information to our knowledge base, and to question. VHUP was incredibly patient with us, and there were frequently weeks when I had developed a new list of questions by the time I got home.
At the most practical level, you need to be sure you thoroughly understand the information you are given at the end of each visit. Do not leave until you understand:
VHUP provided most of this information in written discharges that were extremely informative. But occasionally important information was omitted or the summary was incomplete.
Especially during crisis points in your dog’s treatment, you will to have good communication with the treatment team, to test your understanding of what is happening, to discuss possible treatment alternatives, and to feel that you know enough to make an informed decision about what to do. Asking "does this mean?" and "what if?"can expand your understanding. One way that we continually learned more from VHUP during Berry’s treatment was to ask for that next level of information.
Under stress, we sometimes don’t process information properly – we don’t hear important pieces of information, or get stuck on one idea and miss the rest of the message. When this happens, wrong ideas can become imbedded in our minds, and if we make decisions based on those ideas, we can lose out. An example of this sort of mixed-up thinking from our dog’s treatment:
Berry’s life expectancy with treatment was initially estimated by VHUP to be 6-8 months. Each month that Berry survived and seemed to improve, I rejoiced. But my husband, DC, grew sadder. Every month that Berry lived, DC thought, was bringing us closer to Berry’s death – he had heard 8 months as a maximum. I wasn’t so sure. Finally, at 7 months, I asked Dr. Barber: "How much longer do you think we might have?" Her answer astonished us and gave us great hope: "The longer your dog lives in good health, the longer your dog is likely to live." In Berry’s case, the initial diagnosis had been difficult to make. Was his lymphoma aggressive or indolent? The mere fact that he was still in remission 6 months after diagnosis had answered the question for the Dr. Barber and suggested a chance for longer survival – but until we specifically asked, we didn’t know. DC’s pessimism proved unfounded.
Getting What Your Dog Needs
As with many other situations in life, the reality is that you are as some level competing for scarce resources – the time and critical thinking of the professional caregivers.
The concept here is that you become the lay expert on your dog’s case. Obviously, you are not an oncologist, a vet, or an oncology nurse, but after your dog has been in treatment a few months, you will probably know more about what is planned for your dog on any given day than the Oncology staff will. This is not because you are smarter than the doctors, nurses, or students. It is because they are juggling dozens of patients, while your only assignment is obsessing about the health of your dog, and your dog alone, and hanging on the nuances of every word spoken by the rest of the treatment team. When the chemotherapy protocol is not keeping your dog’s lymphoma under control, or your dog experiences a drug reaction or side effect, the oncologists must evaluate what’s best and make recommendations. But if chemotherapy is proceeding without problems, you should know what’s next.
You should know the treatment protocol, where your dog is in the drug cycle, and what the oncologist told you at the end of the last visit was planned for the next visit. Once toward the end of Berry’s weekly treatment cycle, there was confusion about which drug Berry was scheduled to receive that day. The student had a piece of paper indicating he was scheduled to receive Elspar, but we were expecting vincristine, and we were right. This was a reminder for us that we had to be certain we knew what was planned for each appointment, and then to insist that the oncologist speak with us directly if it seemed like there had been a change in plans.
In addition, you should know your dog’s weight, whether your dog has experienced blood changes as a result of the chemo, what to watch for between treatments.
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