Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

Our Experience with Palliative Care

07/05/2017 | Published by: Marty Barnes

When Casey was a baby, still in the NICU, the hospital brought in a palliative care doctor to work with us. They explained that this was a pediatrician who worked with complex children. They said that he would connect us with other families (something we had been begging for), give us hope, and be a great advocate for us. 

The day he came in, I was looking forward to meeting him and hearing all the many ways he could help Casey and our family. My husband, Tim, returned to work because this was going to be more help for us. 

Sadly, that is not how the meeting went. 

They took me into a conference room with the doctor, his assistants, and about a dozen of the hospital staff. The chairs were all circled around with me in the middle and each person took turns telling me to “give up,” “walk away,” and 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. 

I let everyone say their peace, and then I calmly stood, told them they were wrong, and fired them all from Casey’s care. Keeping my composure, I made my way out to the sidewalk where I called Tim to come back and help me get Casey transferred to another hospital. 

Then, I completely broke down.  

That was a rough introduction to palliative care. Any time after that 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. I was wrong!

Around Casey’s 3rd birthday, we wanted a modified DNR—i.e., Do Not Resuscitate, or Advanced Directive—drawn up to ensure that certain life-saving measures that we knew would be too much for Casey would never be performed. 

Our nursing agency told me that, in order to do this the right way, I really needed to work with a palliative care team. No way! I was not interested in doing that again. 

Our agency kept telling me that it would be different this time. I finally agreed to give it a shot. I had very low expectations.

We had an appointment scheduled, but then Casey ended up being admitted to the hospital. Whenever Casey was admitted, it was usually for at least two weeks, often closer to a month. I called the palliative care office to see about rescheduling the appointment, but instead they offered to come by our room that day. 

It was late afternoon when the doctor and nurse practitioner knocked on our door. The following 2-3 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 person ever asked those questions—or even 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 as we saw her.

The palliative care team was a part of Casey’s life from that moment on. They helped us coordinate her care so that every one of her many (up to 16) specialists were all on the same page. 

They helped us 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 Casey was having pain issues that we could not seem to manage, it was the palliative care team that stepped in and helped us find a solution that worked for her. The last 7 years of Casey’s life would probably have been much shorter, and would have been much harder (especially for her), without all the help that they provided. With their help, she was able to be a girl scout, be in dance, have friends, and a full life.

Palliative care is not about death and dying; it's about making the most of life. The team is there to support medically complex patients and their families. They help achieve the best quality of life for their patients, regardless if that life has days, weeks, or years left to live. 

I am so thankful for all that palliative care team did for Casey and for us.

Learn more about palliative care on this website.

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