I have been dying for the past sixteen years. \u00a0A rare and serious heart and lung condition has led to three separate experiences with death \u2013 three times \u201cgetting my affairs in order\u201d, three times attempting to prepare my children for a life without me (my eldest was a baby when I first was diagnosed), three times struggling to navigate the vast, sometimes beautiful and sometimes treacherous landscape of death.<\/p>\n
So I think about End of Life Options a great deal. \u00a0I think about those options in terms of my own life. \u00a0I think about those options every time I sit at the bedside of a hospice patient. \u00a0I think about those options for the people I support during their own walks with death \u2013 both their physical deaths and the multitude of smaller deaths that each of us experiences on the way to our dying. \u00a0I think about those options for you, too.<\/span><\/p>\n Yesterday my home state of Colorado voted on Proposition 106, the End-of-Life Options Act. \u00a0The appearance of this proposal on our ballot inspires me greatly, because I find it imperative that we determine the legal rights of individuals with terminal illnesses to choose to end their lives. \u00a0However, that is merely one option that we should be discussing when we talk about End of Life Care. \u00a0There are a plethora of other options that should be at the center of our conversations. \u00a0\u00a0We need to explore these options with those we love as well as with those who serve us. Conversations about death around the dinner table are not separate from those in the boardrooms of insurance companies or political chambers. \u00a0<\/span><\/p>\n End-of-Life Options, Death with Dignity, and Right to Die are all phrases used within the political arena to address this single, legal aspect related to terminal illness. \u00a0I advocate that we expand the scope of these terms, that we broaden the political conversation to include the individual, familial, communal, and cultural aspects of dying as well.<\/span><\/p>\n Options<\/span><\/span><\/p>\n Two years before I began my intimate relationship with dying, my grandmother ended hers. \u00a0I watched this woman slowly die as Alzheimer\u2019s rewired her brain into that of an infant. \u00a0\u00a0Frequently during those years when her body was outliving her mind, I heard the same phrase, \u201cI would not want to live like that.\u201d \u00a0Family members imagined themselves in her situation and determined that if they had the chance, if they were diagnosed with this disease, they would choose to end their lives rather than experience the vast suffering that accompanies it. \u00a0<\/span><\/p>\n I understand. \u00a0If I had been told about the pain and anguish that I would experience through my condition, I may have had similar reactions. \u00a0If someone had described the days and nights I would spend hooked up to machinery that shackled me to my hospital bed, gasping for air, I would have said, \u201cNope, I cannot do that.\u201d \u00a0But I would have been wrong. \u00a0Had someone detailed for me the suffering involved in saying goodbye my teenagers before I was boarded onto a medical evacuation plane, not knowing if it was our final goodbye, I may have thought that that moment would be unbearable. \u00a0And I would have been wrong again. \u00a0<\/span><\/p>\n Most of us imagine how we might feel if we ever found ourselves facing a fourth or fifth round of excruciating cancer treatment that may serve only to extend our lives by weeks. \u00a0Many decide that faced with that situation we would choose to terminate our lives. \u00a0And many others of us determine that we never would even consider ending our own lives, no matter what the circumstances.<\/span><\/p>\n What I have learned through these sixteen years of dying is this: \u00a0we truly do not know what we would do in any situation other than the one we are currently experiencing; we cannot grasp how we will feel in any moment outside of the present one. \u00a0Despite sixteen years of dying, despite my three experiences with the physical dying process, despite hundreds of encounters with others who are dying, still I am not able to determine what my choices will be at the end of my final dying process. Many of us in the world of End of Life Care, think we \u201cknow\u201d about death. \u00a0And, indeed, we do know <\/span>many<\/span><\/i> things. \u00a0However, the landscape of death is immense, and we have no way of comprehending it in its entirety. \u00a0The one thing I know that challenges everything else I know about death is that it is just as fluid as life is. \u00a0<\/span><\/p>\n My first two dying experiences were almost exactly opposite one another, even though they only occurred eighteen months apart. \u00a0The first time I was dying I entered into great periods of peace, acceptance, and surrender; the second time, I found myself filled with anguish, guilt, and fear. \u00a0And much of that anguish, guilt, and fear was exacerbated by (if not caused by) my continually arguing with myself that, \u201cThis should be different.\u201d \u00a0I constantly compared this encounter with death to the previous experience and wondered what was dissimilar this time. \u00a0I thought I knew how to die; but this process of dying did not resemble the previous one in any way. \u00a0My life experiences of the intervening eighteen months had woven themselves together in ways that created an entirely new death for me.<\/span><\/p>\n And thirteen years after that, as I lay dying once more, everything had transformed yet again. \u00a0My journey through death\u2019s landscape was altogether different this time. \u00a0And I believe that each of my death walks \u2013 those I take myself and those on which I accompany others who are dying \u2013 will be unique.<\/span><\/p>\n Most of the time, I have a Do Not Resuscitate order on file. \u00a0The document states that I wish to not be revived should my heart stop beating. \u00a0And most of the time, this document reflects what is true for me. \u00a0But sometimes my life circumstances require that I withdraw that document. \u00a0On at least two separate occasions, it was absolutely necessary, given the relationships I was in and my life path at the time, for me to reconsider this decision and to determine that, should my heart stop, I wanted medical personnel to attempt to revive me. \u00a0For me, it is imperative that I keep my options open at all times.<\/span><\/p>\n This consistent grappling with the opportunities offered to me through my dying is the responsibility I embrace as I open to End of Life Options. \u00a0And this includes the vast swath of experiences not covered in Colorado\u2019s End-of-Life Options Act. \u00a0What we have not yet explored as a culture or a political body is the fullness of options presented through and required by our dying. \u00a0I want to have more options than merely to end my life or to allow it to continue. \u00a0I want options to be cared for in ways that I choose. \u00a0I want to die my own death, not someone else\u2019s idea of how my death should look. \u00a0And I want those options to remain open to and for me continually \u2013 even as my dying process changes, even as my ideas and opinions, dreams and nightmares of dying continually shift.<\/span><\/p>\n Death With Dignity<\/span><\/span><\/p>\n The most recent dying I witnessed was that of a 55-year-old man with terminal lung cancer. \u00a0I sat with him for a few hours the last evening of his life. \u00a0He died in a nursing facility with no family present. \u00a0When he entered hospice care, he chose to refrain from listing anyone as his family, to not name any close friends as his support group. \u00a0On my drive to his bedside, I experienced a rush of emotion, imagining what that experience would be like for me. \u00a0I have always been surrounded by loved ones during my dying process, and I made a commitment sixteen years ago that I would work to be present for all those who likewise would want to gaze into a familiar face at their deathbeds. \u00a0I sat in my car, crying at the vision of me not having a loved one present during my death walk. \u00a0And then I reminded myself of what is perhaps the most significant aspect of death: \u00a0we each get to have our own death. \u00a0My preference may be to die at home with my family nearby. \u00a0But this is not everyone\u2019s preference.<\/span><\/p>\n \u201cDeath with Dignity\u201d is a term frequently used in discussions about Assisted Dying, as are \u201cnoble death\u201d and \u201cgood death\u201d. \u00a0Many people decry what they consider to be a scarcity of opportunities for these \u201cgood deaths\u201d in contemporary Western culture. \u00a0And they absolutely make valid points. They describe deaths in hospitals rather than in homes, dying persons medicated to levels that keep them unconscious during their final days, people devastated to find themselves totally dependent on others for the most personal of acts.<\/span><\/p>\n As soon as I had reasonably recovered from my first dying experience, I became a Hospice Volunteer. \u00a0I began with idealized visions of what dying should look like and with judgments about the situations in which those visions were not a reality. \u00a0Through sitting at the bedside of dozens of dying patients, my view has been transformed. \u00a0I now know that it is not my job to guide anyone through this process or to help determine what form their dying should take. \u00a0I have learned that the vastness of experience offered through the dying process \u2014 from blissful state changes to agonizing encounters with physical, emotional, psychological, and spiritual pain \u2013 is not something that can be plotted onto one particular map. \u00a0We do not graduate from a specific stage and get promoted to the following one, eventually arriving at completion of our death work. \u00a0I have been transformed by the realization that it is my sole responsibility and my greatest privilege to be present to all the individuals I serve and to honor and witness each one\u2019s unique way of living and dying.<\/span><\/p>\n Death with Dignity to me means that I am offered the choices to live and die as I want to in each moment. \u00a0Death with Dignity does not involve me trying to avoid medication because that is the \u201cnoble\u201d way to die. \u00a0Death with Dignity may require that my final breaths are taken as I lie on a hospital bed rather than in the bed I share with my husband. \u00a0My dignity in death may take me on a route that leads to my accepting care from others in ways that someone in a healthy body may find demeaning. \u00a0<\/span><\/p>\n As we support one another in creating \u201cgood deaths\u201d, I find it absolutely essential to refrain from writing the stories of those deaths before they occur. \u00a0We must not saddle one another with idealized visions of dying nobly, visions that may be impossible to realize. \u00a0Dignifying death requires that we allow ourselves and one another to each die our own deaths without judgment.<\/span><\/p>\n Right to Die<\/span><\/span><\/p>\n Medieval monks used to walk up gently behind one another and whisper in each other\u2019s ears, \u201cRemember, you too will die.\u201d \u00a0And people from all cultures throughout the globe have had similar practices; they have developed rituals, holidays, and sacred objects to remind themselves that death is always nearby. \u00a0Such practices stem not from morbidity but from practicality. \u00a0By keeping death always in our consciousness, particularly when we are in healthy bodies with full lives, we learn to die before we die. \u00a0This, I believe, is not only our right; it is also our responsibility. \u00a0Our right to die involves opening our awareness to the death and dying that is always occurring around and even in each of us.<\/span><\/p>\n \u201cLive like you are dying\u201d seems almost clich\u00e9 in our world; it is a phrase often repeated in eulogies and heard in country western songs. And it reminds of us something vital: \u00a0that dying is a practice to be integrated throughout our lives, not just found at the moment of death. What those who follow a spiritual path have always known; what Jesus, the Buddha, Mohammed, and all other wisdom teachers have taught, modeled, and shared with us is the essential truth that if we live a life of surrender, death may be no surrender at all. \u00a0<\/span><\/p>\n Here\u2019s a little secret I have shared with only a few people: \u00a0I have had more difficulty dying the \u201clittle deaths\u201d than I have with my physical dying processes. \u00a0I have struggled more with the small deaths to my ego that occur when jobs, relationships, and homes are left. \u00a0And I do not think I am alone. \u00a0The most difficult aspect of dying is allowing ourselves to die, surrendering to the death that is occurring already. And in my experience it can be even more challenging in metaphysical and metaphoric deaths. Each time my body has been dying, I have been unable to hide that reality from myself and others for any period of time. My body then actually supports my dying process. \u00a0Amazingly, those of us who are dying physically actually may have an advantage over those who inhabit healthy bodies, because our physical forms themselves aid in the process of surrender.<\/span><\/p>\n Throughout my years supporting others through their dying processes, I have witnessed repeatedly that the process of surrender required throughout a death walk is exceedingly difficult for those persons who have never learned to surrender previous to this point. \u00a0On the other hand, those dying people who have allowed themselves the experience of full surrender throughout their lives are well equipped to meet this final letting go.<\/span><\/p>\n To me, having the Right to Die extends far beyond the last experience I have in this physical form. \u00a0The Right to Die includes each of the smaller deaths I encounter throughout my lifetime. \u00a0In a culture that privileges everything new and shiny, we are not given the Right to Die our metaphysical or metaphoric deaths. \u00a0We advise one another to \u201clet it go\u201d when we encounter the endings of things, to create new relationships\/careers\/homes before we have mourned sufficiently the loss of those we are replacing. \u00a0Ours is a world that celebrates accumulation \u2013 of money, of goods, of relationships, of status, of pieces of identity. \u00a0None of those things follows us through our dying process. \u00a0And if we have not learned to release our grasp on them, they ultimately may entrap us in this world as we are trying to exit it. \u00a0So I advocate for every one of us having the Right to Die (indeed, the responsibility of dying) throughout our lifetimes. \u00a0<\/span><\/p>\n Assisted Dying<\/span><\/span><\/p>\n I do not know where death will lead me next. I do know that I will want to experience Assisted Dying. \u00a0Perhaps that will entail me choosing the moment of my death. \u00a0But much more significant are the other ways in which I desire to assist my own dying \u2013 to be true to each moment of my experience, to die my own death rather than someone else\u2019s ideal of death, and to continue to practice both of these throughout my lifetime.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":" I have been dying for the past sixteen years. \u00a0A rare and serious heart and lung condition has led to three separate experiences with death \u2013 three times \u201cgetting my affairs in order\u201d, three times attempting to prepare my children for a life without me (my eldest was a baby when I first was diagnosed), three times struggling to navigate the vast, sometimes beautiful and sometimes treacherous landscape of death. So I think about End of Life Options a great deal. \u00a0I think about those options in terms of my own life. \u00a0I think about those options every time I […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"episode_type":"","audio_file":"","cover_image":"","cover_image_id":"","duration":"","filesize":"","date_recorded":"","explicit":"","block":"","filesize_raw":"","footnotes":""},"categories":[1],"tags":[],"yoast_head":"\n