Providing care for a complex patient with unique health issues in the community can be a challenge. My name is Kelly and I work at St. Boniface Hospital on medicine/oncology. My sister Jaime was born with an undiagnosed neurological condition which presented itself as status seizures, hydrocephalus and spastic quadraplegic. She had always been treated symptomatically due to this reason.
She was on a ventilator, had a trach, and gastrostomy tube. Delivering this care was a team effort: we had approximately ten nurses who worked for us in the home daily. I want to share with you an overview of Jaime’s care in her last months of life. It will focus on the decisions made during Jaime’s last days, when she was clearly struggling to enjoy life.
During the period of six years in which she was seizure free, she was able to attend school, loved to go shopping, went to church, and on trips with family. After attending the Palliative Care Conference last September I felt comforted knowing there was a peaceful way to care for patients who were near death. The personal loss I felt was that as sisters we were no longer able to effectively communicate on a daily basis, emotionally and physically due to her increased medication and seizures.
By Christmas, 2006, things were going downhill and we realized that Jaime was tired of struggling through each day. As a family we sat down with Mike and Simone and discussed what our next step would be. Jaime’s quality of life had clearly diminished as far as she couldn’t communicate effectively with us anymore and she was crying because of the uncontrolled seizures which were making it very hard for her body to function. Her body had stopped digesting food therefore we had to slow and lessen the amount we were giving her yet we continued to maintain hydration. She had very little urine output so we inserted a foley catheter as comfort measures. My mom knew it was time to take her off the ventilator and let her go. It took my dad and I a bit longer to realize that this is what we needed to do but we eventually we all agreed. We were concerned about the ethical part of this decision however Dr. Harlos explained everything into great detail and we discussed it with her life long neurologist and respirologist as well as the ethics board of directors Pat Murphy, everyone agreed that this decision was ethically justifiable and in Jaime’s best interest.
The decision was made. I had taken off school to spend all the time I had left with her. My parents and I were there the whole time. The hardest part was that we knew she could not go on like this but because we picked a day it was like we had issued her death wish. I don’t even know how to describe it. We cried all week, I felt like it was a countdown. All I could do was think to myself “okay I have three more days left to spend with my sister, now only 72 hours left” and it was a dreading feeling. I did not want to sleep so I was up during the nights with her, just hoping she would bounce back as she had many times before.
By Wednesday January 17, 2007 we had been up all night sitting with her. She was sleeping a lot off and on, but just knowing what was going to happen was making me sick inside. Now having gone through Palliative Care theory and clinical I can better appreciate what palliative care and palliative sedation have to offer the layman going through the experience.
I could see the meds kept Jaime quite drowsy but comfortable. Dr. Harlos and Dr. Crawford then decided to wean her off of the ventilator over a fifteen minute period believing she would not last longer than an hour but my sister who has never done things normal in her life, thought “why start now”. We had put on some quiet soothing music. Even though it was such a hard decision we knew we had to follow through on it.
Shortly after the IV and meds were started Jaime woke up and you could clearly see that she was panicking, it was at this point we had started giving her breakthrough meds as I called Dr. Harlos right away and they came back immediately. Following the incident, time went by slowly. It was during this time that family supported us by bringing us food and anything we needed so that we could remain by her side as promised.
By early evening her O2 sats stayed at 35% and her heart rate balanced between 100-120bpm. Due to the neurological breakdown she had intermittent fevers and seizure activity. Everyone was amazed how she kept going. As we sat with her through the night I was disturbed by the rattling of the secretions as she struggled to take each breath. Each breath was so loud it sounded like she was drowning in the secretions even with the scopolamine and suctioning. However learning after the fact, it is harder for the family to hear this than it is for the patient experiencing it.
By 1100 that morning her sats were at 30% and at 1204, her sats dropped and her heart rate dropped as she took her final few breaths. She opened her eyes, looked at us and stopped breathing. My sister died January 18, 2007 at 1204pm. It was the worst moment of my life. I lost her, my baby sister. My heart broke at that instant. Her body was there but her spirit was gone. We stayed with her for about an hour or two until the funeral home came to the house to pick her up. That was the next struggle, saying goodbye and allowing them to take her.
The next few days were such a blur, I couldn’t sleep, I had no desire to eat and we were so busy making funeral arrangements. We had a viewing, an interment and then a memorial service, Jaime loved her Disney characters especially Minnie. We had Jaime wearing her Minnie t-shirt and we kept her holding her stuffed animal Minnie which she never let go. The funeral was emotionally and phsyically exhausting although we had a lot of support from friends and family. It was amazing how one little girl was able to touch so many hearts without ever saying a word.
There are good moments and bad moments. Such things as when we started cleaning out her room, it was painful; we had to take all the supplies back to the hospitals and companies. Some places gave us a hard time but that is life, it was going through her books and deciding which ones we wanted to keep or give away that hit me. It wasn’t until I saw in the garbage a Christmas card I had made for her two years ago that I pulled out to keep and I just sobbed. I miss her everyday and think about her always. I have her other stuffed Minnie on my shelf and it reminds me of her all the time. I know she is in an even better Disneyworld than what we could give her here.
I have gained much insight about myself and the issues of death, and grief. I never thought this would be the way I would have reacted. I thought I would have been the exact opposite and gone into a depression, turned away from my faith and quit nursing but instead I relied on my faith to help me through. I guess our family knew this day would arrive we just never knew when and how soon, we tried to prepare ourselves but I do not think you are ever fully prepared. You read books, watch movies, learn about grief in class however trying to categorize yourself into the five stages of grief is next to impossible. I feel as though I am a part of all the stages. Some days I am in denial, and some days I have accepted what has happened. I do not think I will ever complete my grieving, I will always feel that emptiness inside and I know eventually life will get a bit easier to handle again. There is a book by Katafiasz (1993) that states, “When you find yourself doubting your capacity to recover, be patient and realize that the grief process, though lengthy, ultimately does bring healing”.
The palliative care team was awesome. We always wanted Jaime to eventually die at home and they made that option possible. I was dreading my palliative rotation as a student because it was only a month and a half after Jaime passed away however I found it to be comforting being there, and I think it even helped me heal. I was able to tell my story to the nurses there and they supported me and it really was a good experience. My mom asked me the other day how I felt about palliative care and if we had to make the same decision again would I go through with it. I did not even blink, I said now having been through palliative care on the ward I am even more supportive than I was before. I understand a lot more about what goes on in palliative care than I did before and I don’t think it would have been so difficult to make the decision then knowing what I know now. The entire palliative care team is amazing and it takes a special person to do what they do.