I consider it a privilege when we are asked to care for someone at the end of their life; to have them trust us to come into their home, offering whatever advice and support we can to help them navigate the end of a life. Something else that I feel is a true honor, is when we are asked to be present when the End Of Life Option Act (EOLOA) medications are desired, and this human gets to choose when they take their last breaths, removing the equation of continued suffering.
This is a subject that has been met with quite a bit of controversy. I respect those who do not support it. I do not question their feelings because I believe they have every right to feel however they choose. I have never kept it a secret that I am a very big supporter of this law and I am thankful that our patients are given a choice to shorten the amount of suffering they might have.
I have been present for many of these and what I have come to find the most comfort from is the support and understanding of the people who love them and will be left behind. The person who decides to take these life-ending medications is brave in my eyes. This is not an easy decision to make, but it is also not easy to receive news that you have an illness that will end your life. If that isn’t bad enough news, you might also hear that you could be riddled with pain, or breathing difficulties, or anxiety/agitation and sometimes all of the above. And while you are usually given a time frame, what exactly does that mean moving forward? Six months to a year (sometimes longer-sometimes shorter) is hard enough to navigate, but to anticipate continued or future suffering, just plain sucks. To be given an option to shorten the suffering, to die with some sense of dignity, to be able to say goodbye on your terms... that seems like the only foreseeable light in your future. I would choose that light.
I ask each of you a favor. Try to put yourselves in their shoes, accept that their decision is not an easy one to make but it is their choice and to be able to end the pain and discomfort, to not have to lose all independence, to not have to know that their family is (in their minds) burdened with their care. In some ways they make this choice to end the discomforts of the dying process but most often, to lesson the struggle their loved ones experience. This seems incredibly unselfish to me... and again very brave. And while I know those caring for them do not consider it a burden, and would prefer to have more time with them and want to provide the care... it is really hard for the person lying in the bed to have you do this for them. Most people in this situation want the last moments with you to be while they can still say "I love you", they can still hug you, and they can say "thank you" and "goodbye" with dignity. They want that to be your last memory.
I recently had the honor of being present when an incredibly kind man decided to exercise his right to take the End of Life Option Act medications. He was the kind of man you are immediately drawn to, he has an impact on everyone who meets him, myself included. Prior to him taking the medications, he took time to say goodbye to his friends and family. One person in particular was his grand-niece Dawn, who after what would be their very last conversation wrote an incredibly poignant goodbye. Her words are honest and raw, beautiful, compassionate and come from a place of ache from having to say goodbye to someone she loves very much. She respected his choice, and supported him completely, despite how hard it was for her.
I asked her if I could share her words, which she kindly allowed me and her family supported. My hope is that perhaps for those of you who struggle with this choice, you might be able to see it from a different perspective and while it may never be something you would do or ever support, you can try to accept that this is their choice and simply respect it as that.
Dawn … to have ache this deep, you have had to have known great love and I think it is quite clear you had so much love for this wonderful man. I want you to know… the feeling was very mutual. Thank you for sharing your heart and your love for him, with us.
From Dawn Hartwell…
There are moments in life where the words will fail you. Where an entire planet rummages around in your mind and you can’t sift through enough to stream together something meaningful. But that is okay. What strange moments people can have when facing certain life facts. It’s like “here comes a big fucking train and it’s going to run you over.” So we talk. I hear you, and you hear me. And tomorrow? Gone perhaps. I tell you dirty jokes, and we talk of beaten down imitation pieces of meat. You don’t know what to say, and I say that’s okay of course. In these moments we speak of puzzles, shitty dinners, frozen kneecaps in 48-degree weather and laugh at wearing shorts in the strong night breeze. What a unique thing it is to express love. To be able to love. To hold someone so firmly in your heart and know that is the real home no one can take away from you.
I go dark, and my humor goes dark. I think in the finale you should suck back as many cigarettes as you can if that is what you want to do. I think life is a weird and funny thing and it is going to break me sometimes. But you can be sure as shit I’m going to treasure it too. It’s so fantastic to know that there are no right things to say, but in that, there are no wrong things either. Instead, we will just say things. So dive deeply into the feelings when needed. But have people to bring you back up for air. Know that there will be waves, and it’s okay to tip your head under, and even let your lungs hurt and strain. But let people be your air. Talk about stupid shit. Talk about meaningful shit too. Talk about whatever you want. Or don’t talk. And know that the silence is allowed. It is okay, even if it is uncomfortable.
I want to give you words that are better than me crying on the other end of the line.
Something to chew on as we go into tomorrow. And the distance is killing me. But I know that I’ve settled myself, firmly, tacking myself next to that ridiculous wallpaper I’ve created in the home in your heart (you’re welcome). And just like so many others who are housed in me, you’re on my mantle. Smiling, debonair you. And I will watch over others as you have me. And I will tease out and encourage blossoming as you have for me. And I will learn in retrospection. And I will write and write and write. And though new responses won’t come for me, I will imagine them fondly and remember the old ones. I have memorized your voice. And though I’m but a puddle on the end of a line at times, you have helped foster a force in me. The words have not fallen short. So, I will accumulate all the historical texts and conversations from you and put them in my mind files. You can know that while the words you seek now aren’t easily forthcoming, it is probably because you’ve already said them all and they have in fact, been heard. You’ve already said it all. Everything. (And yes, I love you too).
This blog is a collaboration between myself, a hospice nurse, and Dawn Hartwell the grand-niece of a man she said goodbye to prior to him exercising his right to end his suffering on his terms.
“California End of Life Option Act is a law enacted in June 2016 which allows terminally ill adults resident in the state of California to access medical aid in dying by self-administering lethal drugs, provided specific circumstances are met.”
“The End of Life Option Act closely follows the model of the Oregon Death with Dignity Act with some modifications, most of which are required to comply with the California statute.”
Photo Credit: Frances Freyberg Blakburn
I invite you to visit her site: www.francesfreyberg.com Her photographs grace the walls of our hospice house, and our main office. I love the way Frances takes you along on her adventures.