Why A Terminally Ill Patient’s Death Decisions Are All About Love & Living

I realize that death and dying is a very hard and heavy subject to talk about for most people. Thanks to Brittany Maynard however, it is being talk about a lot on the news and social media. Her decision to take control over when she dies has caused people on both sides of the right to die issue to take to every social media channel to express their opinion. I think the real issue for others not that she is choosing when and how she will die but the fact that she is so young. She is only 29. That age instantly brings a sense of angst when associated with death because the average life span is between 76 and 81. You can’t help to think that there is still so much life left to live. While this may be true for a healthy person, for Brittany who has terminally brain cancer that isn’t the case. It wasn’t the case for my sister Angel either. People may judge the choices about dying that both Brittany and my sister made were cowardly, selfish, or that they have given up on life but I am hear to tell you that when a terminally ill patient makes those death and dying choices it is about the Love they have for their  family, and about Living.

Growing up for me was not your typical all american experience. From as far back as I can remember in my childhood, I remember my sister being seriously ill. When she was between 7 & 8 she was diagnosed with Severe Aplastic Anemia. Mind you this was in 1979-1980. Not much was really known about this disease back then and the life expectancy was in the teenage years. I can recall countless weekly, sometimes 2 times a week, trips to John Hopkins Hospital in Baltimore, Maryland. We lived in Salisbury, MD which was about a 2 1/2 – 3 hour trip depending on traffic.

Her medical team at Johns Hopkins was just amazing. In the hopes of curing Angel it was decided that she would have a bone marrow transplant. After testing the family for a donor it was found that I was the perfect match. My mom says that even at 4 years old I was asked if doing the transplant was something I wanted to do. My reply was “Yes”. My parents as well as the Doctors, were so hopeful that this would be a complete success. Sadly that wasn’t the case.

Throughout my sister’s short life she spend much of it in and out of the hospital. She was very susceptible to every germ or illness that was floating around. There were 2 or 3 occasions that I remember being told that she was going to die. It was those times when she was very sick in the hospital and the doctors had done all they could. The entire family would go to the hospital, sit with her and pray for a miracle. God gave us a miracle each of those times.

Along with those close calls with death, she endured many other medical procedure, medical trials, and daily dosages of several medications.Through it all she showed so much strength, courage, and love. Some of my fondest memories of her include her always being their to help others. When she was your friend she would do anything for you. Her 3 closest friend were Beth, Jackie, and Mia. They always knew that if they needed anything no matter what time of day or night she would be there.

I don’t want to paint my sister as a saint or anything because she was very human. As sisters we fought like you wouldn’t imagine. During times when she was home and healthy we were typical sisters fighting over chores and toys. Looking back now I realize that most of those fights were because I was feeling animosity and jealousy towards her getting all of our parents attention. These feelings developed because I was left out of the loop when it came to her medical situation. My parents didn’t really know what or how to talk to me about everything that she was going through. They were both dealing with their own stress & grief of my sister’s illness as young parents. It wasn’t easy for them to deal with the day to day medical issues on top of all the regular issues that parents deal with.

My mother was the one that was there with my sister almost every minute she was in the hospital. She along with my father had to make life and death medical decisions that I can’t imagine having to make. As if that wasn’t hard enough she also had to be my sister’s advocate when it came to her education as well. She fought the school board to make sure my sister got the education she deserved when she was too sick to go to school. Through all of it my dad had to work full-time and take care of my brother and I when my mother wasn’t there. If there was only one thing I could say about my parents it would be that my mother will fight to the ends of the earth for the people she loves and the my father is stronger emotionally than anyone else on the planet.

While it took many years after my sister’s death for me to fully understand what happened, the fact of the matter is my parents did the best they could at the time. They didn’t have support groups and family support therapist for chronically ill patients back then. What we did have was a wonderful extended family that stepped in to help take care of my brother and I. My Grandma and Pop Pop Jim for instance were always there for us. I stayed with them quite a lot growing up. It was because of that love and support that we were able to make it through my sisters passing.

When Angel turned 18 and was legally now in charge of her medical care she made a very important decision. She chose to sign a Do Not Resuscitate (DNR) order. She also decided that she was done with all the medical procedures and being a pin cushion. This decision was so hard for my parents to understand and come to terms with. They had fought for 18 years to keep her alive and have a happy life. Angel knew that this wasn’t going to be easy for them to understand but it was a decision she had come to out of love. She saw how hard it was for my parents to deal with everything through the years. She knew that they would never stop fighting no matter what. She knew that if the time ever came when they would have to make a decision to end life support that it would be almost too much for them.

This decision wasn’t about her wanting to die. She was still full of life and the desire to live it. The decision was about enjoying the rest of her life and removing the stress from my parents that they had carried for so so long. She loved and appreciated everything that my parents had done for her and this was her gift to them. Like I mentioned before it wasn’t news that my parents wanted to hear or accepted easily but with time and long talks with Angel they began to understand and comes to terms with the decision she had made.

My sister passed away on September 6, 1990. She was 20 years old.

While a DNR is different then choosing to end your life through the death with dignity law, it is still choosing to take control over your own death. These decisions are not ones that are made lightly nor should they ever be judged. Until you have walked in the shoes of a terminally ill person you could never truly understand how selfless this decision really is and how at the root of it all is Love!

Comments

  1. Those definitely are tough decisions and all the more important that people make these decisions while they’re healthy, no matter the age. You never know what will happen and you don’t want to end up in a situation where your family is torn and can’t decide what to do. Some life prolonging measures can cause more pain and suffering.

  2. Great post, her story brought up a lot of convo on the topic. Talking about DNR options should be done by all!

  3. Thank you so much for sharing your sister’s story. I have a similar story but my sister was 28 when she did and was life support for a week before the decision was made to let her go peacefully. She had cancer.

  4. Beautifully said. Thank you for sharing your personal story; definitely gives some insight into the heaviness of the decision making process.

    xo,
    Stephanie
    Diary of a Debutante
    http://www.thediaryofadebutante.com</a

  5. So well written and touching. I haven’t experienced this personally, but I do believe that it is a choice made out of love. Thank you for this article. I have a feeling your sister is seeing this and smiling.

  6. Thank you for sharing. After having a family member pass away recently from Cancer, I feel similarly to you. She didn’t want the invasive treatments or life-prolonging procedures. She chose to die with dignity. Though it was not a doctor assisted suicide, which is available here in OR, it was eye opening for the hard choices that must be made and accepting a person’s wishes. She suffered at the end and I can’t say I would want to put my family through that. I think Brittany was a brave girl and choices about death are very personal.

  7. Wow, Teresa. I’m in awe of your strength and courage in sharing your sister’s story. My heart goes out to you and your family, after al this time. I’m sure there are still moments in which you feel grief and sorrow, but I hope your memories of your sister comfort you and that stories like Brittany’s give you hope that your sister’s legacy is still very much alive. 🙂

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