Five Weeks

I see my death as a soft, quiet affair. I lie in the grasslands by the house I grew up in. I slip away quickly and silently, and I leave my body to the ground. 

I want to die with dignity— that I know. Deciding what constitutes dignity, however, has become more and more challenging. There is so much that modern medicine can do for us, fighting against our demise until the very last moment. Not everyone, though, wants to die amidst the chaos of battle, and most of us have a point when we would say, “that’s enough.” This is how things have been and will always be; at some point, we must give in.

The call came this summer. She had fallen. My grandpa found my grandma in the bathroom, curled up on the floor, unresponsive. The doctors said that she had suffered a stroke. She may not recover use of her left side — she may not speak again. My grandpa paced the length of the room at the foot of her hospital bed, a sad, uneven gait with his artificial hips and knee, watching his wife of sixty years disappear in a matter of hours. She was in and out, generally unaware of the surrounding world, and unable to move much of her body. There wasn’t even enough time to process it all before the doctors were asking my grandfather what she would want, ultimately. How would she want to die? How do you want to die?
The concept of advance directives has been around since 1967, when attorney Luis Kutner created the first living will to give patients a way to document their medical care wishes. It aimed to increase the rights and autonomy of patients, like my grandma, who could no longer speak for themselves, entrusting their care to a loved one or a previously composed list of preferences. Advance directives are often, but certainly not always, a part of end-of-life care. They give you the opportunity to designate someone whom you trust to speak for you, and they give you the means by which to have important conversations with those closest to you about your wishes. It resolves the questions surrounding dying with dignity —  you decide what dignity means to you.

We are notoriously bad, however, at facing our own mortality. While formalized advance care planning has existed for almost fifty years, the percentage of people who die with an explicit record of their wishes is still shockingly low. Only about 30% of Americans have any sort of advance directive. There is a lot that holds people back when it comes to planning for their own death. Perhaps it is too difficult to think about, perhaps someone is too young and dismisses the personal relevance of end-of-life care planning, or perhaps healthcare providers never make available information about how the process occurs. These obstacles are substantial, but not insurmountable. Somehow, we need to overcome the stigma around talking about death.

Some places in the United States are ahead of the curve. Last month, NPR ran a story about “The Town Where Everyone Talks About Death.” A deeper look into La Crosse, Wisconsin reveals why it has become the model for the rest of the country. In the bustling city of about 50,000 people, 96% of people who have died have completed advance directives. That is over triple that of the national average. La Crosse “does death differently,” according to the story; it is a place where people do not only talk about death, but do so comfortably.  

Bud Hammes is the man behind the success of La Crosse. A physician and ethicist at a local medical center, he has been on the front lines of the move toward normalizing end-of-life care planning. He noticed that patients often waited until it was too late to have the difficult conversations about death, and he decided to be proactive. He began training healthcare professionals to have conversations with patients that not only put the choices about end-of-life care in relatable language that patients could understand, but also helped them confront their own mortality in a hypothetical manner. 

Using scenarios, facilitators push people to find their limits, to decide when care would be too much. The purpose of the advance directive is to remove the ambiguity and make clear distinctions about what medical procedures and measures a person wants to allow. Most importantly, residents of La Crosse do this long before they face a medical emergency. The beauty of the advance directive is that it is not final. As you grow older, as you have a family, as your priorities change, so can your plans. You have the power to, at any point, alter your wishes. In keeping your advance directive current, you have the comfort of knowing that, should something happen to you at any time, your wishes will be fulfilled. It is in your hands.

It was five weeks from the call to the day that my grandma finally let go. Five weeks of trips from her three sons and daughter, their families and other relatives. Five weeks of confusion and miscommunication and pain. Five weeks of surgery, stopgaps, and renewed hope, only to be right back where we started. She was long past eighty. It was time. For us to make that decision for ourselves, though, was tough. Who were we to decide that it was her time? It should have been her choice.

A New York Times op-ed in February by Jessica Nutik Zitter, titled  “When ‘Doing Everything’ is Way Too Much,” detailed the final days of a man whom they call Vincent, a man who stapled a note to his advance directive asking doctors to do anything and everything within their power to keep him alive. Through the suffering and struggle against each new infection or failed organ, doctors persisted, fulfilling his wishes when he lost his ability to speak and all awareness of his surroundings. Zitter describes his death as one of anguish and humiliation. Some want everything to be done to save them, no matter the costs. Those people, however, are likely the minority. La Crosse, Wisconsin, according to the NPR story, spends less on healthcare than anywhere else in the country. When given the choice, people often want less than they would otherwise receive. But without an advance directive, without someone to speak for you or some record of your wishes, we will all be treated the same. A team of medical professionals who have never met us before will make our decisions, usually leaning toward Vincent’s case: “doing everything.” This suggests that many people each year are receiving care that they may not have wanted. While I deeply hope that my grandma was not among those people, I know somewhere within me that she was.

Death is gritty, primal. The means by which modern medicine can keep us alive in the very end, when all of our systems ingloriously fall out of step, are not romantic or beautiful or dignified — think respirators, tubes running every which way, morphine drips. At some point, the number of days that medicine can extend your life begins to pale in the face of the pain and trauma. What is the tipping point? How do you want to die?

We now face the challenge of confronting the discomfort inherent in talking about death. 
I have fallen into this unexpected niche, suddenly entrenched in the fight for greater advance directive education. At twenty-one, I am not your average advocate for end-of-life care planning, and many people in the field whom I have interacted with are shocked to hear how passionate I am about it. To get young people to think about advance care planning is notoriously challenging, albeit still necessary. In a town where nearly half of the population is composed of students in their teens or twenties, it isn’t an easy thing to get people to understand. Ultimately, I don’t want other people to have to go through what my family did. So, I’m driven to do something.

Through a group called Art In Decision-making (AID) that consists of undergraduates and MPH candidates, I have become a part of the attempt to normalize the culture around advance directives. AID has initiated several art projects at DHMC, many of which try to elicit creativity and reflection from patients as a way of easing the pain of confronting death. If you walk in through the back doors of Dartmouth Hitchcock Medical Center and wander down the hallway, you’ll see it: a star-shaped sculpture of twisted copper pipe with a hundred smaller stars hanging off of it with fishing wire, the whole thing suspended from the ceiling in an alcove just off of one of the main passageways. Each little star is a piece of cellophane-like material that has been written on. The project was started a few years ago by a group of medical students to encourage conversations about advance directives – it is covered in thoughts that patients have had as they go through the process of facing their own mortality and making their wishes known. The goal is for the art to be therapeutic, to allow people to share, to show them that they are not alone as their star hovers next to a hundred others. Some people write a lot, some people write a single word, and some people write nothing, just folding their piece into its star shape and leaving it in the basket to be hung. For them, it is just the act of adding their piece to the sculpture that makes the difference. Words do not help.

Another member of AID has spent the last few months painting Baker Library onto a canvas that will bring together healthcare providers and patients to express their commitment to advance care planning. Patients, doctors, and nurses put their handprints onto the canvas to form the trees that flank the library in an expression of solidarity. Only as a team can we ensure that everyone has a voice in his or her care, until the very end. It will hang in DHMC as a reminder of the pledge we all have made to do just that.

A professor once pointed out to me that we are the only creatures on earth that have both the luxury and the burden of being able to envision our own death. I believe it is our obligation to do so.

No one really knew what my grandma wanted. The end brought us all to our knees. No one wanted to be the one to call it, to say that this was not what she would have wanted, because no one knew if that were really the case. What I do know is that the suffering of those five weeks is not something she would have wanted for any of us. That I can be sure of.

An advance directive is not a Do-Not-Resuscitate order. But it can be. It can give you the chance to stand up for yourself, to say when enough is enough. It can also be your order to fight until the very last day; to each his own. I choose the former — easy enough to do when the end is hopefully so far away. But to choose is something that we all owe to our families, our loved ones, and ourselves.

What is most challenging is that this requires an acknowledgement of the fact that we will, indeed, die. To choose is to face mortality. It does not, however, make death come more swiftly or more angrily. It does not change how you will move through your life until that day. But it does change how you will end.