Death educators encourage all adult mortals to plan in advance for their healthcare and eventual death. We encourage people to think about best- and worst-case scenarios for the somewhat predictable and inevitable, as well as the sudden and catastrophic. We emphasize the benefits of considering and discussing before there is a crisis – the onset of dementia, a terminal diagnosis, an accident – and we suggest that you reflect periodically, and with every major life and health event.
While many death workers offer advance-planning guidance as part of our scope of practice, you do not need to hire a lawyer or doula to complete a healthcare directive. A large and growing body of free tools is available for creating documents and having meaningful conversations. New ones sprout up every day, including checklists for “getting your shit together,” not to mention new industries for greener ways to handle our bodies after we die.
We live in a culture that fetishizes choice and self-determination, and marketing machines generate endless privatized solutions – for those of us who can afford them. The expansion of options is great, and exploring them may deepen our connection to the life cycle. It can also distract us from accepting the limitations of individual agency over aging in our bodies and living in this world.
Many of us fixate on resuscitation orders and green burial, for example, but resist exploring the landscape of care for living with dementia, which one in three of us will live to experience, thanks to wondrous advances in public health and treatments for heart disease and cancer. Some of us who live in the luxury and naivety of able bodies, youth, adequate med- ical care, and secure housing can- not imagine valuing lives of limitation and compromise. Those of us living in less-valued, vulnerable bodies, for whom getting adequate care is not a given, might not prioritize avoiding resuscitation or hospital visits. Our wishes and fears about death reflect not just our individual preferences, but also our relationship to social and cultural forces at large – and our vastly different experiences in life.
The basic tasks of planning are designating someone to represent your preferences for medical care, in the event that you are alive and unable to speak for yourself, and providing them with guidance. If you do not do this, the task will fall on your next of kin; in Massachusetts, this means your spouse, your adult child, your parents, and then your sibling. This centering of family, as defined by law and biology, is appropriate for some – and disastrous for others. Completing legal documents that name someone will- ing and able to represent our wishes is key, and providing them with flexible, values-driven guidance is a loving, life-affirming gesture.
The best kind of guidance considers some likely scenarios, but recognizes all that we can neither predict nor control. Can any of us be certain what we might choose in the face of an illness, a disability, or a near-death experience? Remembering this can be helpful when someone we love is dying.
The dying process is a dangerous place to bring a fixation on perfection and control. Death plans are expressions of what we value most in our lives, and sometimes reveal fragments of trauma and loss from earlier experiences. If we are not careful, we may feed the fantasy of control and independence that sets more of us up to fail and increases the potential grief and trauma our loved ones will carry.
While birth plans were introduced in a landscape of overly medicalized and disempowered pregnancy, one of the unintended consequences I have witnessed is emotional distress when complications arise and attachment to a rigid vision of birth leads to a sense of failure. In both cases, the plan is not the project, but with death it is especially hard to see any result as success. This is why, while encouraging this work, I try to find ways to dismantle and worry rigid notions, however individualized, of “good” or “bad” deaths. The much less marketable reality is: We are trying to plan for experiences that almost always include mystery, mess, and lack of control.
It is easy to project our fears and despair onto our loved one’s labor- ing body, especially if we haven’t witnessed death before. It is easy to second-guess decisions, and the actions or inactions of medical providers. These experiences some- times fuel rage – misdirected at ourselves, or at others – but they might also motivate us to address systemic failures of care. I recommend including in the guidance what I call “advance forgiveness,” which goes something like this: Thank you for showing up for me. I trust that you will do the best you can.
The dying process involves more than the body. It is a gift to have opportunities, amidst our sorrow, to honor our people by following their wishes. This is not always possible. We cannot always be in the room, bring them home, soothe their emotional distress, or afford the greenest disposition. In my experience, heart-wrenching situations and mistakes cannot always be avoided or fixed. But there are also always opportunities to honor lives, stay connected, and express our love and gratitude.
Resistance to and fear of death are completely reasonable, and making time and space to dream of a sweeter scenario is a lovely way to begin to engage with death. The attachment we may feel to our vi- sions of a good death is a key to the precious life we could remember to savor right now. But it would be sad to succeed in freeing ourselves from the clutches of “losing the battle,” only to find ourselves in the equally unrealistic enterprise of pursuing a narrowly-defined “beautiful” death. I do not think this is progress. My version of progress involves making structural changes to our medical system. It involves expanding accessible infrastructures of care, and it involves giving ourselves more room to grieve, more time to connect with our beloved dead.
We can replace unreasonable expectations of endless, able-bodied, independent lives with visions of care that value the labor of caregivers and embrace our interdependence. As our tender hearts remain deeply attached to life, and to the people we love, we can find unexpected gifts as we are simply doing the best we can. In the meantime, building the capacity to show up for each other often means doing some thoughtful, flexible planning, having conversations, making adjustments, and savoring the lives we love.
