I have been dying for the past sixteen years. A rare and serious heart and lung condition has led to three separate experiences with death – three times “getting my affairs in order”, 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. I think about those options in terms of my own life. I think about those options every time I sit at the bedside of a hospice patient. I think about those options for the people I support during their own walks with death – both their physical deaths and the multitude of smaller deaths that each of us experiences on the way to our dying. I think about those options for you, too.
Yesterday my home state of Colorado voted on Proposition 106, the End-of-Life Options Act. The 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. However, that is merely one option that we should be discussing when we talk about End of Life Care. There are a plethora of other options that should be at the center of our conversations. We 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.
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. I 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.
Options
Two years before I began my intimate relationship with dying, my grandmother ended hers. I watched this woman slowly die as Alzheimer’s rewired her brain into that of an infant. Frequently during those years when her body was outliving her mind, I heard the same phrase, “I would not want to live like that.” Family 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.
I understand. If I had been told about the pain and anguish that I would experience through my condition, I may have had similar reactions. If 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, “Nope, I cannot do that.” But I would have been wrong. Had 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. And I would have been wrong again.
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. Many decide that faced with that situation we would choose to terminate our lives. And many others of us determine that we never would even consider ending our own lives, no matter what the circumstances.
What I have learned through these sixteen years of dying is this: we 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. Despite 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 “know” about death. And, indeed, we do know many things. However, the landscape of death is immense, and we have no way of comprehending it in its entirety. The one thing I know that challenges everything else I know about death is that it is just as fluid as life is.
My first two dying experiences were almost exactly opposite one another, even though they only occurred eighteen months apart. The 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. And much of that anguish, guilt, and fear was exacerbated by (if not caused by) my continually arguing with myself that, “This should be different.” I constantly compared this encounter with death to the previous experience and wondered what was dissimilar this time. I thought I knew how to die; but this process of dying did not resemble the previous one in any way. My life experiences of the intervening eighteen months had woven themselves together in ways that created an entirely new death for me.
And thirteen years after that, as I lay dying once more, everything had transformed yet again. My journey through death’s landscape was altogether different this time. And I believe that each of my death walks – those I take myself and those on which I accompany others who are dying – will be unique.
Most of the time, I have a Do Not Resuscitate order on file. The document states that I wish to not be revived should my heart stop beating. And most of the time, this document reflects what is true for me. But sometimes my life circumstances require that I withdraw that document. On 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. For me, it is imperative that I keep my options open at all times.
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. And this includes the vast swath of experiences not covered in Colorado’s End-of-Life Options Act. What we have not yet explored as a culture or a political body is the fullness of options presented through and required by our dying. I want to have more options than merely to end my life or to allow it to continue. I want options to be cared for in ways that I choose. I want to die my own death, not someone else’s idea of how my death should look. And I want those options to remain open to and for me continually – even as my dying process changes, even as my ideas and opinions, dreams and nightmares of dying continually shift.
Death With Dignity
The most recent dying I witnessed was that of a 55-year-old man with terminal lung cancer. I sat with him for a few hours the last evening of his life. He died in a nursing facility with no family present. When he entered hospice care, he chose to refrain from listing anyone as his family, to not name any close friends as his support group. On my drive to his bedside, I experienced a rush of emotion, imagining what that experience would be like for me. I 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. I sat in my car, crying at the vision of me not having a loved one present during my death walk. And then I reminded myself of what is perhaps the most significant aspect of death: we each get to have our own death. My preference may be to die at home with my family nearby. But this is not everyone’s preference.
“Death with Dignity” is a term frequently used in discussions about Assisted Dying, as are “noble death” and “good death”. Many people decry what they consider to be a scarcity of opportunities for these “good deaths” in contemporary Western culture. And 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.
As soon as I had reasonably recovered from my first dying experience, I became a Hospice Volunteer. I began with idealized visions of what dying should look like and with judgments about the situations in which those visions were not a reality. Through sitting at the bedside of dozens of dying patients, my view has been transformed. I now know that it is not my job to guide anyone through this process or to help determine what form their dying should take. I have learned that the vastness of experience offered through the dying process — from blissful state changes to agonizing encounters with physical, emotional, psychological, and spiritual pain – is not something that can be plotted onto one particular map. We do not graduate from a specific stage and get promoted to the following one, eventually arriving at completion of our death work. I 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’s unique way of living and dying.
Death with Dignity to me means that I am offered the choices to live and die as I want to in each moment. Death with Dignity does not involve me trying to avoid medication because that is the “noble” way to die. Death 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. My 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.
As we support one another in creating “good deaths”, I find it absolutely essential to refrain from writing the stories of those deaths before they occur. We must not saddle one another with idealized visions of dying nobly, visions that may be impossible to realize. Dignifying death requires that we allow ourselves and one another to each die our own deaths without judgment.
Right to Die
Medieval monks used to walk up gently behind one another and whisper in each other’s ears, “Remember, you too will die.” And 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. Such practices stem not from morbidity but from practicality. By keeping death always in our consciousness, particularly when we are in healthy bodies with full lives, we learn to die before we die. This, I believe, is not only our right; it is also our responsibility. Our right to die involves opening our awareness to the death and dying that is always occurring around and even in each of us.
“Live like you are dying” seems almost cliché in our world; it is a phrase often repeated in eulogies and heard in country western songs. And it reminds of us something vital: that 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.
Here’s a little secret I have shared with only a few people: I have had more difficulty dying the “little deaths” than I have with my physical dying processes. I have struggled more with the small deaths to my ego that occur when jobs, relationships, and homes are left. And I do not think I am alone. The 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. Amazingly, 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.
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. On 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.
To me, having the Right to Die extends far beyond the last experience I have in this physical form. The Right to Die includes each of the smaller deaths I encounter throughout my lifetime. In a culture that privileges everything new and shiny, we are not given the Right to Die our metaphysical or metaphoric deaths. We advise one another to “let it go” 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. Ours is a world that celebrates accumulation – of money, of goods, of relationships, of status, of pieces of identity. None of those things follows us through our dying process. And 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. So I advocate for every one of us having the Right to Die (indeed, the responsibility of dying) throughout our lifetimes.
Assisted Dying
I do not know where death will lead me next. I do know that I will want to experience Assisted Dying. Perhaps that will entail me choosing the moment of my death. But much more significant are the other ways in which I desire to assist my own dying – to be true to each moment of my experience, to die my own death rather than someone else’s ideal of death, and to continue to practice both of these throughout my lifetime.