What do YOU want?

No one wants to think about getting sick or making end of life decisions for themselves or someone they love, but getting sick happens and death will eventually happen too. Questions about how you want to live your life, what kind of care you would like to receive, and the extent of what measures are to be taken on your behalf should be addressed while you are healthy and alert, not in a moment of desperation or left to family to determine what YOU would want. Now I know you are probably thinking, "Wow, Kristen is being really morbid and depressing", but I have always been a strong believer that we should be the ones in control of our health care. I remember when I worked on the Health Plan side of KP and I would go present at health fairs and employer events. I would talk to employees about why they should choose Kaiser Permanente and how to navigate this big system of ours. I would always tell them that if they have a bad experience, they need to let us know about it by contacting member services. If they don't feel like they connect with the provider they were assigned, they can ask to switch to someone else. This is THEIR health plan and they must have a voice in the care they receive. I've also wondered why we haven't made Advance Directives part of our enrollment packet. Some may argue that it sets a tone of "you might die with us", but I think it can be approached it a way that says, "We want YOU to help us make these very important decisions. Tells us how you want us to care for you."

So now you are probably thinking, "No one just randomly starts thinking about POLST and Advance Directives, this must be because Kristen's daughter just died." My answer is yes and no. Yes... this has been on my mind a lot since my daughters passing and I'll explain why in a moment, but no... it isn't random, this is something I've thought about for years. When my late grandmother was in her 80's, she and I became pen pals. Writing letters back and forth became a weekly thing. As her health slowly deteriorated, her letters included words to me about how she wanted the end of her life to be handled. She did not want drastic measures taken on her behalf. She was quite clear that she did not want to be put on life support or have her life prolonged if the quality of life was poor. She had already arranged for a plot next to my cousin where she wanted her cremated ashes to be buried and reminded me of that in almost every letter. My grandmother lived until she was almost 98 years old. She had a high quality life and wanted to leave this world with grace and dignity. When my aunt wanted to hold on to her even longer by requesting extreme efforts by her medical team, I was able to provide the advance directive that my grandmother had given me and my nana's wishes were respected and upheld. Those letters and that advance directive gave me and my sisters the peace of mind we needed to make the right decisions for my grandmother in a time when the heart begs you to do something completely different.

So how does this relate to Amanda's passing? When Amanda was 12 years old she was very ill and spent six months of her 7th grade year in and out of the hospital. She was so sick that there were times when her father and I weren't sure she was going to survive her illness. One day I came home from work and her older sisters, who had taken a semester off from college to help take care of her, came to me in a panic because Amanda had written a Will. My heart skipped a beat to think my 12 year old daughter thought she was going to die. I went to talk to her about it and she looked at me with surprise and laughed and said, "Mom... don't you know that you are supposed to write your Will when you are healthy? The people on TV said it's called a Living Will and you should have one so people know what to do with you and your stuff." With a deep sigh, I realized my daughter, who had become a tv  infomercial addict during her illness, had the clarity and insight that most adults don't think to have. She understood the concept of "letting people know your wishes". When she passed away in July, her sisters and I sat together and pulled from our memories all that we could from her will.

• Her clothes were to go to her friends - if we could find someone who could fit in to her 00 pants - she added with a smiley face.
• She wanted her dog to go to her sister Breanna (who politely said we could keep him)
• Her make-up and nail polish collection to her sister Lauren
• Her music to her cousins
• And along with all the other things on her list... in a final note to her dad and I she wrote "Dear mom and dad... Enjoy the memories and my stuffed bunny".

This took a huge weight off my shoulders, because I knew what my daughter would want us to do. We called over a couple of her 'tiny' friends and had them do their back to school shopping in Amanda's closet. Amanda, being an extreme fashionista, had an amazing wardrobe and she was able to bless her friends who weren't financially able to go back to school shopping on their own. I was able to release her belongings with the assurance that I have truly been left with the most beautiful memories and that those are more important than any material goods.

Amanda also taught me another lesson about the importance of making your wishes known. She was sixteen years old and had one month left to go before she could get her drivers license. Her 23 year old sister took a little bit longer to get her license and didn't make that move until a couple months before Amanda's passing. Amanda went with her sister and her dad when Breanna took her drivers test. Amanda saw Breanna filling out an Organ Donor card and asked what that meant. Breanna and her dad explained that it means when you die, you are offering to give some of your organs to others so they can live or improve the quality of their life. Amanda, without any hesitation, asked if she could sign up. Once again, she made her wishes clear. So, after learning of her death and knowing there was a small window of time for organ donation, I asked my friend, Dr. Mark Eastman, who had come to our house immediately after hearing the news, if he would ask the coroner if organ donation was a possibility. He looked at me and said "Are you sure?" and I, remembering the conversation with my daughter not too long ago said, "Yes... It's what she wanted."

We received this letter a few weeks ago from One Donation who handled her organ donation.

I realize that Advanced Directives are not the same as writing a will or becoming an organ donor, but the concept is the same. It is about making your wishes clear and letting others know what YOU want to happen to YOU. I believe, it is one of the kindest things you can do for your loved ones because you take away the guilt of having to make those tough decisions. It provides peace of mind for those who may be left to act on your behalf because they know you and what you want. 

So I leave you with this thought... Are you prepared? Have you made your wishes known? What do YOU want?