It’s dizzying to think about how much our attitudes on death have changed over the last century. While the moral, social, and metaphysical implications of and questions about death have remained largely unchanged throughout all of human history, it is only recently that it stopped being this always-stalking, fast-approaching, carnivorous force. That’s due to modern medicine.
Vast and remarkable improvements in science and medicine have prolonged lifespans and made invariably fatal diseases and ailments mere inconveniences. That has changed the way we feel about dying. Life can be prolonged, even for those with chronic illnesses. And while many times that can be a blessing, we haven’t quite reconciled our ability to save a life with the morality of doing so in every situation. Can, after all, doesn’t always mean should.
That’s where Dr. Jessica Zitter comes in. With 20 years experience as a critical and palliative care specialist, Dr. Zitter is uniquely positioned to observe the world’s (especially the Western world’s) new ideas about dying and to question whether they are right. She was featured in a documentary on the subject, Extremis, which was nominated for an Academy Award. It raised issues that few want to touch.
But there are those who want to have this needed conversation. Dr. Zitter recently spoke here at Institute on Aging (IOA), challenging us to “find a better path to the end of life.” We were honored to have her, and our discussion led us to question what has become, in America, axiomatic: the notion that it is better in all cases to preserve life instead of talk about what a good life and a good death actually mean.
What We Talk About When We Talk About Dying
In her talk, Dr. Zitter cited some remarkable statistics. Over half of chronically ill ICU patients say that being hooked up to a breathing machine is “worse than death.” We use that phrase a lot hyperbolically (“I hate being stuck in traffic; it’s worse than death”), but in this case, it is literally true. People say they would rather die than breathe artificially, and that goes for all sorts of life-saving measures.
Indeed, 80% of chronically ill ICU patients say that they would rather “die at home” than at the hospital, which generally means without tubes and needles and being surrounded by beeping machines taking nonstop electronic measurements of the mystery of individual existence. But only 33% of these patients actually do go home. The rest pass away in a way that they didn’t want.
Dr. Zitter’s talk and her work ask why this is. The primary reason is that we are now able to take “extreme measures” to save the lives of the chronically ill. And that’s the whole focus: extending life, without always asking about the quality of it. And that just puts the patients on what she calls “the end-of-life conveyor belt,” where “they are intubated, catheterized, and die attached to machines, frequently without even knowing they are dying.”
This came to light for Dr. Zitter when a nurse once threatened to call the police on her for “torturing” an old and frail patient. Dr. ZItter was trying to save the patient’s life; but, to the nurse, this was inflicting stress and pain on the old woman. She was on the conveyor belt, a problem to be solved, even if only temporarily. She wasn’t a person with actual agency.
To Dr. Zitter, that nurse was a new kind of hero. The kind of hero we need.
IOA and Understanding the End
The talk, held at our San Francisco campus, was a packed event, with more than 100 people attending. Those included medical professionals, administrators, civic leaders, and interested citizens. When we talk about death, of course, we are all interested.
At IOA, we believe that a person should have agency over their decisions as much as possible. Like Dr. Zitter, we believe that all decisions about life and how to live should be patient-focused and patient-centered. The job of a doctor isn’t just to prolong life but to make life better.
Sometimes, that means providing the means to die comfortably even when the life could technically be saved by technology. To Dr. ZItter, this means having honest and realistic conversations about options, including death. It seems stark, but death always has to be an option. If not, then life is only about staving off dying and not embracing all of life’s possibilities.
We believe that life should be full of options for older adults. Our mission is for older adults to age at home, with dignity, adventure, and joy, as much as possible. It’s about giving people the chance to create the life they want, without expectations. Sometimes those expectations are placed on us by society. Other times, they are placed on us by well-meaning doctors.
The choice of how to die is one that people should talk about with their loved ones, doctors, psychologists, and spiritual guides, in whatever combination they best see fit. As Dr. Zitter points out, we aren’t talking about encouraging people to die, and we aren’t talking about physician-assisted death.
We’re talking about having the options explained to all parties in clear and compassionate ways. Being put on life support, or the end-of-life conveyor belt, isn’t always the best option. But people deserve to have a choice. It might be the last, and most important, choice to make. We need to treat the decision with respect and with honesty. We need to expand what “should” means.
We’ve changed how we approach death. But we should never change how we approach people.
At Institute on Aging, we believe that older adults should be at the center of decisions on their lives, and we work with caregivers and families to ensure that all voices are heard. Our programs and services help older adults live with dignity, comfort, and adventure. Connect with us today to learn more.
Photo credit: Vatsal Dholabhai