This past weekend, we needed to take my toddler son to the ER. Thankfully, he was quickly diagnosed and treated, and was feeling better after several hours. This is the first time that my husband and I had to take one of our children to the ER in the three years that we’ve been parents. Considering the activity level of our children who were early walkers and climbers, that’s probably nothing short of miraculous!
Being in the ER reminded me of another time, though, a time in which I was in the ER once a week on average. When we were first married, Peter was suffering from chronic and severe pain. It was unclear what exactly was causing the pain; no one could tie the pain to the tumor on this liver with any certainty, but that was roughly where the pain was originating. As a result of the pain, he was on heavy pain killers, and if he ever got behind on taking the pain killers, the pain would overwhelm him. We often ended up going to the ER so that they could bring his pain down to a manageable level. Going to the ER was a trial, not only because of the wait, but because the doctors often treated him as being drug seeking, rather than being truly in pain. Once they heard his medical history and that he had cancer, they usually realized that he was telling the truth, but it was always a guess how long it would take to get to the point where he would receive medicine to help him. One of the wonderful side effects of the experimental cancer medication that he was on was that it took away the pain almost completely. No one could figure out exactly why the medicine worked that way, the working theory was that it was helping in some way with inflammation. Once Peter’s liver levels went up and he was no longer allowed to take the cancer meds, we both dreaded returning to the weekly trips to the ER to control the pain. In fact, one of the first things that happened after he was taken off the medication was that he was admitted to the hospital in an attempt to control his pain.
While we were there, however, Peter made the decision to stop treatment (for more information on this decision see “‘Just Take me Out and Shoot Me’ is Not An End of Life Plan”), which meant that he was eligible for hospice care. Although the qualifications for hospice care vary, usually you need to be no longer pursuing active treatment and only be looking for palliative care, at least in the case of cancer. It was very hard to make the decision to enter hospice because it seemed like we were giving up and refusing to fight the cancer. However, Peter wanted to make the most of whatever time we had left, and hospice care seemed to offer the best chance. Once he was in hospice care, he was able to receive a personal, portable IV pump for his pain meds., and the hospice nurse came to our house 2-3 times a week to check on him. We had wonderful nurses, and they took amazing care of him. Because his pain was controlled, we were able to go to mass, go away for a weekend, see family, and just spend quality time together, and we never had to worry about those dreaded trips to the ER. In fact, Peter was surprisingly active up until just a few days before his death. I know that being in hospice is what made that possible for him.
I’m sure that being a hospice worker is one of the most emotionally taxing jobs that there are for a medical professional. For anyone who has chosen to work in this field, thank you, from the bottom of my heart.