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How Hospice and Palliative Care Improved Our Daughter's Quality of Life

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When Casey was a baby, still in the first NICU, the hospital brought in a palliative doctor. They explained him as a pediatrician that worked with complex children and made us think he would come in and connect us with other families (something we had been begging for) and give us hope and be this great advocate for us. The day he came in I was looking so forward to meeting him and hearing all the many ways he could help Casey and us. Sadly, that is not how the meeting went. He and his staff, along with about a dozen of the hospital staff (they asked if they could join and use this as a teaching moment since they did not see many children as complex as Casey) brought me, by myself, (this was supposed to be a good thing so Tim went back to work) into a conference room. The chairs were all circled around with me in the middle and each person took turns telling me to “give up,” “walk away,” that my child “would never be more than a vegetable,” etc. To this day, I am not sure how I got through that intervention, which is really what they made it. Somehow, I let everyone say their peace and then I calmly stood, told them all they were wrong and then fired them all from Casey’s care.  Still keeping my composure, somehow I made my way out to the sidewalk where I called Tim to come back and help me get Casey transferred to another hospital. I did soon after completely break down, but I was able to hold it together long enough to let them know they were no longer allowed to treat my daughter.

That was a rough introduction to palliative care. Anytime I heard the word I immediately pictured the grim reaper, cloak, staff and all. For me, early on, palliative was a “death doctor” and nothing more. That was a specialty that was called in when there was no more hope.

I was wrong!

Around Casey’s 3rd birthday we wanted a modified do not resuscitate order (DNR), or an advanced directive, drawn up to insure that some life saving measures we knew would be too much for Casey were not ever going to be done. It was at this time our nursing agency told me in order to do this the right way, I really needed to work with palliative care. No way, I initially thought. I was not interested at all in that again. Our agency kept telling me that it is different now, and the urged me to give it another shot. After lots of reluctance, I finally agreed to give it a shot. I had very low expectations.

We had an appointment for the following Tuesday and on Thursday Casey was admitted to the hospital. We knew any admittance for her was at least two weeks, usually closer to a month. I called the palliative office to see about rescheduling the appointment for when we were sent home, but instead they offered to come by our room that day. It was about 4 p.m. when the doctor and nurse practitioner knocked on our door. The following two to three hours forever changed our lives. They came in, sat down and wanted to know all about Casey. Not only medically, but as a person. What did she like, what made her happy, what did we like to do as a family? It was the first time any medical professional ever asked, or seemed interested in us as people — as a family. They never once told me to give up on Casey. Instead they saw her as this amazing little girl with a full life and limitless potential, just like we saw her.

Palliative care was a part of Casey’s life from that moment on. They helped us to coordinate her care so that everyone of her many specialists (she had up to 16) were all on the same page. They helped us to get the equipment and medications we needed at home to avoid the lengthy hospital stays. They helped us get nursing hours covered so we had the skilled support at home to help with Casey’s complex needs. When we needed non-typical things for Casey, they helped write scripts and orders so that Casey’s care team could help us give her the support she needed without putting anyone’s future at risk. When Casey was having pain issues that we could not seem to manage, it was palliative that stepped in and helped us find a solution that worked for her. The last seven years of Casey’s life would probably have been much shorter, and definitely would have been much harder (especially for her) without all the help that palliative provided.

It wasn’t until the final days that we reached out to hospice. Some palliative doctors do both, but the services are actually quite different. Palliative is not about death and dying at all. They are there to help complex patients make the most out of their lives (however long or short that may be). Hospice, which again, there is some overlap, is about providing support and comfort to those near the end. Some people are in and out of hospice, and some people are in hospice long term. We were in palliative long term, and we called palliative when Casey took a turn for the worse. Our palliative team got us into hospice after that call.

In Texas, once you are in a hospice program, a few things change. All of our equipment and supplies were sent to us monthly and our insurance would deal with each of those claims. We had a handful of doctors that wrote the orders for supplies we needed, and we coordinated getting those delivered each month. Hospice took over all of our equipment, supplies and even medications. As soon as we were officially on their list they would be the ones to provide anything we needed. The idea is that a family can focus on their loved one and not have to worry about the headache of dealing with everything else. Hospice was there to reduce stress and give us time as a family to just be together. They also would come into the home a few times a week and could provide not only our existing medical supplies, drugs, etc, but if Casey needed something stronger they could get it at any time of the day or night. They were there to make sure that she did not suffer for a second, and that we all felt comfortable and understood what was happening.

We made the call to our palliative doctor on a Monday afternoon. Our nurse was out that day and as I was taking care of Casey I could tell things were not good. When Tim came in and saw me completely broken, he knew it was time to make the call. At first we thought we had plenty of time, so we did not rush the process.  The original plan was for them to come out early-mid the following week. The next day was rough and Tuesday night things seemed to be getting worse. We started to give Casey morphine Tuesday night, and had not had to do this in many months. When we got the bottle out, we had enough for the night, but not the next day. Tim called the on-call palliative doctor, which also happened to be the head of hospice, to ask for a new script for morphine that he could pick up first thing in the morning. The doctor asked him a few questions and realized we could not wait until the following week. We needed to get hospice started right away.

Wednesday morning I needed time with Casey and I needed to process a few things. I called our nurse and asked her to stay home. I then sat with Casey while Tim ran out for drugs. My heart was breaking and I knew time was running out. I thought I still had weeks though. I told Casey how proud I was of her, and how lucky I was to be her mom. I then told her when she was ready and needed to go, that she could go. I would be OK, and she should not stay here for me. That was one of the hardest conversations I have ever had.

A little later, the hospice nurse arrived to do all the intake paperwork. She left shortly after Tim got back home and told us she would call in a few hours or if there were any questions. Around 5 p.m. she let us know we were officially on hospice and gave us a number if we needed anything 24/7.

Thursday morning we let our family and close friends know things were not going well. Our day nurse came in and she helped Tim and I keep Casey as comfortable as possible. Tim called the on-call that morning to let them know Casey was getting worse and that we thought maybe some IV fluids or pain patches may help. They said the nurse would be out soon and she could help us figure out what was best to do.  Shortly before she arrived, everything changed. Casey let us know she was done, and so we turned off the machines that were basically breathing for her. I picked her up and she, Tim and I sat on the sofa together. Our favorite place. We loved snuggle time. The hospice nurse arrived and helped keep Casey comfortable. We continued to sit together and Tim and I took turns telling Casey how much she was loved and how proud we were of her.

We had about two hours to say everything that needed to be said. These two hours were a huge gift to us. We were able to say goodbye. Everything on her last day was done her way. That means more to me than anything else. It was all on her terms.

Since we were on hospice, after Casey passed our nurse was able to take care of everything. There were no sirens, no police, no EMS. It was just us and peace. When we were ready, she called the funeral home that came for Casey. We were then able to lay her and her things onto the bed ourselves. Everyone treated her and us with respect. It was an awful day, but it was also very beautiful and peaceful. Without hospice there, it would have been very different.

Our experience was unique to our needs, but I think our experience is a good way to see the different roles that palliative and hospice play. Most people are on hospice for more than 24 hours, but hospice played a huge role in our final hours while palliative’s role played out over seven years.

Follow this journey on Casey Barnes.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 22, 2016
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