I want to die with the salt air of the ocean filling my lungs, amongst laughter, in sheets with a ridiculously high thread count and a mattress that feels like a puffy cloud and yet doesn’t make my sciatica angry. I want to pass with a smile on my face, holding the hands of people I love, smelling warm salt air and flowers blooming. I should probably plan not to do this in Maine, someone remind me to move back to Hawaii before it’s my time please.
I don’t want feeding tubes or breathing machines in my last days, if there’s no reasonable expectation of them being a temporary measure, don’t even start. On the other hand, if my death process is complicated by something like pneumonia, please feel free to treat it, I’m not really keen on choking on my own secretions as a way to go. Make me comfortable but if my quality is gone, don’t give me quantity just because you can, please. Whatever it is that may someday bring me to the spot of my own death journey – I can tell you with a great deal of confidence what I do not want.
I don’t want to die in the hospital, I’ve spent far too much of my life here, please, not those last days. I don’t want flat pillows and squeaky beds and some nervous nurse who puts me on a bed alarm just because she doesn’t think it’s funny when I get out of bed, lower myself carefully to the floor and yell “help, I’ve fallen and I can’t get up”. Don’t draw endless labs for the point of making me a pincushion – it may interest you to know my ammonia levels, but if I’m past the point of correcting them, just let me float off into that confused bliss. Don’t make me suffer, I’ve rarely had a difficult time getting my point across when I really desire to, I doubt a few milligrams of morphine to reduce my pain and anxiety will prevent me from saying what I need to say in those final days. Don’t leave me alone – I may be terrified of being a burden or making those I love suffer through watching my end, but please, hear the words I may not be able to say…. hold my hand, talk to me, laugh with me, hell laugh at me, but don’t go…..not until I’ve found peace.
This is the conversation we don’t like to have, these are words society continues to avoid, and we do it at our own peril. It may seem odd to you that at 37 I can tell you so clearly some of these things, but that is a function of conscious choice to consider it, as well as years of experience watching it go some other way.
I want to facilitate this discussion, I want you to ask these questions to yourself – do you want quantity or quality? Where is the line for you? Do you want drastic measures – only under certain circumstances or always? There is no right answer, as long as there is an answer, as long as you have shared that answer with people that have a possibility of holding it to truth if that moment should come. Talk about the hard things, because in talking we start to remove the fear, in talking we start to plan for a better tomorrow and a peaceful ending. Talk because you never know when it might be too late to speak for yourself.
Day after day I watch patients and families struggle with the reality of never having had the conversation. The family either doesn’t know a patient’s wishes or tries to over-ride them. The patient feels pressured by the family to fight beyond where their quality is gone, they suffer, because they never had the conversation earlier, which could have helped someone understand, you never wanted to be here. Have the conversation because it is inevitable, you are not immortal, someday, and somehow it will come, your own death story. Would you rather fear it, or embrace it and shape its path?
I want to be on the side of taking beautiful journeys with people through their last days. I want to smile and laugh and make it peaceful, I want to hold your hand or make it possible for your family to hold your hand. I want people to stop dying in hospitals, alone, suffering. I want to help change the face of death in this world. We changed the face of life – most of us won’t die quickly like so many before us. We will spend days and months dying thanks to the amazing advances of medical science; spend those days living even in the process of dying. Share the answers that will let you and those in your life take you to that peaceful place in a beautiful way.
Please, let’s have the conversation