Part of my job right now in preparing to do more of this work involves extensive reading and research on related topics. Some days I wonder if there’s any hope as I work through this process of learning. I sit down at my computer to look up a topic, I enter a phrase in the search engine and off I go. Oh! But there are so many glorious topics and things to read. I search for DNR information and wander through green funeral options, I read an article on POLSTS, meander around to the site of another doula, and then find a game to play to raise awareness of end of life issues. I follow so many squirrels that I sometimes think I am becoming one….I need to eat less nuts. There is so much however, so much to learn, to love, to be excited about!
I know, I’m talking about death and I’m excited, weird right? Except that death, death doesn’t hold any power other than what we as a society have given it. I don’t mean that it doesn’t hurt to lose someone, or it isn’t frightening to face your mortality, but the fact of the matter is, we live in an amazing age where death doesn’t have to involve suffering, where medical technology and human interaction are so very possible that there is no reason that an individual cannot die in the same manner, with the same values they lived their lives.
The only way to change the culture is to open up, to talk, like I do here, like is done every week in death cafe’s around the country. We need to talk. And let me tell you, I can talk. I could talk all day long about how exciting this climate of potential change is, about amazing programs for palliative and hospice care, about amazing people dedicated to this same work. I can talk to you about my passion for educating everyone to plan early for death, not in an expectation of an early demise, but in preparation for the fact that death is a certainty at some point, and preserving what you cherish in life is very truly possible, if only you communicate and share and discuss it so that others might make your wishes come true.
I find myself often in conversation saying I’m sorry to people, my endless rambling on about these topics, sometimes I worry that people are just tired of hearing it, or they don’t find it interesting or they just plain hate talking about end of life. I don’t want to say I’m sorry. I want every one of you to have this conversation with me, to plan, to learn, to grow and to give yourself the best possible opportunity to have what you value as quality of life until your last breath.
Can you see my vision? Do you want to help it come true?
Then talk to your families, share my name and let me help people, call me to help you plan or just get online and learn and grow and plan yourself. The point is not if people employ me to assist them in their end of life or its planning, the point is that people do it. You can nod your head all day long and agree with the theory of what I talk about and what I do, but until you’re doing it, until you’re talking and writing and communicating and helping those you love do the same, I am failing, we are failing.
If we do not change what has become the status quo, if we do not depart from only having discussions on the news of “right to die” as the end all be all to change the culture of death in this country, if we do not learn to advocate for ourselves and those we care for…..then I would imagine we should all remain fearful of illness and death.
Don’t get me wrong, I’m a strong advocate for the right to die legislation that’s being fought for around the country. I firmly believe that we need this legislation – but it does come with dangers. The biggest danger is thinking that somehow entirely solves our problem of how to improve the death experience. I firmly believe that the power of this legislation comes in it’s ability to free people with terminal illness from the worry about a way to end suffering, they will have a legal choice, a reduction of the stigma around ending your own life, a way out if the suffering ever becomes too much. The rest of that equation tho, the more powerful part? Is creating a system where we talk about death, where we assist people in their dying process to get resources, make difficult choices that preserve their own perception of quality of life and, use hospice and palliative care programs to their full potential and make dying a better experience. It is imperative these two things work together, they are not mutually exclusive nor were they ever meant to be. It however, becomes a societal responsibility to call for appropriate intervention not just legal right to die.
The statistics and numbers are there to support this, palliative and hospice care have a shown record of creating longer, happier end of life experiences over traditional hospital treatment and prolonged medical intervention. The cost is less too, not that I choose most the time to focus on the economic benefits, but its true.
So maybe I can talk you all into getting excited? Maybe if you keep hearing my passion and my exuberance for this work, it’ll catch on? Maybe, I hope so, I don’t intend to stop, and I’m going to stop apologizing for talking about something that I am so incredibly passionate about….It’s time to change the face of dying. One conversation at a time!