What's funny to me - not funny "ha ha" but funny "peculiar" - is that when I am asked to give a presentation on hospice and palliative medicine, the program coordinators almost always ask me to "focus on the positive" or "keep it upbeat" or, even better, "try not to focus on death and dying". One time I even had someone tell me, "This group really likes to laugh" and then scheduled a magician to go on after me. I mean, really? How in the heck am I going to talk about hospice and palliative medicine without talking about dying? And, while I am always upbeat and positive about death and dying, this in an of itself is peculiar to people. What can I say? I have an affinity for end-of-life care. In fact, I think it is by far the most exciting topic on the planet.
Today, however, I signed up for a challenging task. I am to give an hour and a half interactive lecture to a group of cancer survivors about hospice and palliative medicine and I'm asked to title it something that would actually draw in a crowd. It's a daunting task to say the least and a potential buzz kill for a cancer survivor. BUT I know I can do this and I WILL do it. I've never been one to back down from a challenge.
So, I came up with:
"Knowledge is Power - Understanding Your Options"
Speaker:
Lisa Marie DiLuigi, RN BSN CHPN
Director of Hospice
Legacy Hospice of the Piedmont
A Danville Regional Medical Center Affiliate
The bottom line is no one wants to talk about death and dying despite the fact that there is a 100% chance that one day we all will die. How do you plan for death without talking about it? Therein lies the challenge. I mean, if you don't put some planning and forethought into it you can be guaranteed it's not going to be a momentous occasion - at least not in the positive sense.
I commonly ask people to describe to me the best party they ever attended. They go on and on about the food, the decorations, the music, the toasts, the company, the outfits, etc., etc., etc. Then I ask them how much planning they think went into making that party such a huge success? I follow that by posing the question: "If you knew that you only had 6 months left to leave and that aggressive treatment could not extend your prognosis without greatly affecting your quality of life, how would you want to spend that time?"
Most answer that they would want to be surrounded by family and friends. They would want to be at home. They would want to be comfortable. They may want to take a trip to their favorite vacation spot, go fishing, visit their grandchildren, or have meals with their favorite people. Perhaps there were relationships that needed mending, spiritual struggles that needed to be resolved, or financial matters to address. ALL of these things take preparation and planning.
When we come to that time in our lives when cure is no longer an option we have to have a plan. Well executed plans lead to satisfactory outcomes. I want everyone to have a good death. I want every family and caregiver to have the opportunity to embrace the dying process and to experience the joy of celebrating the lives of those we love.
One of the most beautiful deaths I have ever encountered was the death of my grandmother, Dorothy DiLuigi. She was diagnosed with cancer around age 85 and chose not to pursue curative treatment because she knew that she was too advanced in age to withstand chemotherapy and radiation therapies. She, instead, opted for the palliative care route. In the month of April she was admitted to home hospice services. She spoke to all of us about her wishes, she had an advanced directive, and she was very clear that she did not want anything aggressive done to prolong her life. She wanted to live the remainder of her life with the highest possible quality for as long as she had left to live. For her, that meant visiting with her children, grandchildren and great-grandchildren. It meant eating chocolate and watching movies, visiting with long time friends, and crocheting for the "elderly". She wanted to give away her things to the people she loved and see the looks on their faces when they received family heirlooms that would keep her memory alive for years to come. She wrote us letters and told us daily how much she loved us and to "talk to me when I'm gone, I'll be listening". She received the Anointing of the Sick when she became bedbound and unable to eat or drink. She had family gathered all around her. We prayed, we laughed, we cried, and we said goodbye with our words, our tears, and our touches. Some of her last words were, " 'Love', it's the biggest word there is." She died in September at home, surrounded by those who loved her, in peace and comfort. It was sad and I miss her every day, but it was the most beautiful death I have ever experienced.
I can't help but want the beauty of that experience to be had by others. So, even if I was not placed here on this earth to talk about a topic that is socially acceptable, I pray that I will be fortunate enough to have my words influence and positively affect the lives of others.
