Is it ever too early to starting talking about and making plans for what is important to you at the end of life? This questionmoved front and center afterIread a storyabout a little girl named Julianna Snow.
Julianna has a rare but terminal neuromuscular disease. Julianna’s mother is a neurologist and has had very serious and life altering discussions about end-of-life care with Julianna.These talks have allowed their family to establish priorities that are right for Julianna and herfamily.
Is four years old too early? Julianna’s parents don’t think so. While they are the grown ups and the situation and are taking responsibility for making the best quality of care decisions for Julianna, theyare allowing their little girl to have great influence onthe decision. Julianna has decided that she doesn’t want to go back to the hospital. In the hospital her treatments are both frequent and painful and won’t serve to cure Julianna but only to postpone and prolong. She is choosing heaven instead.
Julianna’s webpage shares some of the joys she has in her life. Little wins that she might not be able to experience if she was going back and forth to the hospital. Wins like being held by her mom (a rare moment), playing with her brother or just getting in a little bit of trouble with markers. Julianna’s decision not to go back to the hospital allows her to experiencethese small wonders, otherwise known as quality of life.
Julianna’s case is special and I’m definitelynot suggestingthat every child needs to have an end-of-life conversation.I do believe that every adult needs to talk about and documenthis or herwishesand make sure his orfamily knows what is important if a tragedy or illness strikes. Julianna’s story underscores the point that understanding your options and facing heavy choices head on can improve the quality of your life at the end of life.
Like I have said before, these are hard conversations and hard choices but let’s take heart from a forward-thinking 4 year old. Be brave and make the plan that is right for you.