I was a young man, still a teenager, when I got to see firsthand just how horrific the process of dying can be. Then last week, now in my 30s, I witnessed what can be called a “good death” with the passing of my grandmother, a profound gift given to her and our family.
On rare occasions loved ones are taken from us due to accidents, or acts of violence, or sudden catastrophic medical events. But more often than not, death is proceeded by choices and in many cases these choices determine what kind of death those we care about will experience.
Throughout my time in high school during the 1990s I was a volunteer at what was then the publicly funded Geriatric Center, known today as the privately owned Friendship Ridge. I ended my work at the facility abruptly one day after witnessing a particularly horrid death. It was the demise of a woman whose family had done too much, who had demanded too many procedures, insisted on too many medications, had pushed too hard to stave off the inevitable.
Except for the nurses who worked on her floor, I was the only other person by her side when she died. She had a look of terror on her face, yelled out in pain, gasped, winced, contorted herself. The nurses tried desperately to alleviate her suffering but I remember their efforts as being ad hoc, disorganized, and wholly ineffective. Even after death had mercifully put an end to the woman’s suffering and she was covered in a white sheet, her body continued to move sporadically for brief moments, the nurse had a hard time convincing me she was actually gone.
I had been volunteering at the Geriatric Center for years, but that incident haunted my dreams and I just could not bring myself to step foot back into the facility again. That experience stayed with me, it became a template of my worst fears for myself and for those I love. I still have that woman’s photograph in a scrapbook of my time volunteering at the facility, stuck between photos of others I had grown to know and care about, tucked away in my memory box under a Dammit Doll one of the residents had sewn for me.
While there have been many advances in medicine over the two decades since that day at the Geriatric Center, end-of-life care has remained a taboo subject.
Physicians are first and foremost warriors for life. Death has still largely been viewed as a defeat on their battlefields, even though it is the inevitable outcome for us all. Attempts by the medical profession to develop ways to educate patients and their families have also been largely ignored and sometimes even ridiculed. We can all remember former Vice Presidential candidate Sarah Palin’s absurd “death panel” myth, concocted to demonize provisions of the Affordable Care Act that provide funding for counseling on end-of-life care options; death can be scary and fear a powerful political tool.
Then just last year, a physician who is board certified in both critical-care and palliative-care medicine wrote an Op-ed for the New York Times. Dr. Jessica Nutik Zitter, an attending physician at Alameda County Medical Center in Oakland, California, said publicly what many healthcare providers have been saying privately for a long time: sometimes we do too much and we really just don’t know how to stop.
“I was trained to use highly sophisticated tools to rescue those even beyond the brink of death. But I was never trained how to unhook these tools. I never learned how to help my patients die,” wrote Dr. Zitter. “I committed the protocols of lifesaving to memory and get recertified every two years to handle a Code Blue, which alerts us to the need for immediate resuscitation. Yet a Code Blue is rarely successful […] It has become clear to me in my years on this job that we need a Code Death […] I would argue that a well-run Code Death is no less important than a Code Blue. It should become a protocol, aggressive and efficient. We need to teach it, practice it, and certify doctors every two years for it. Because helping patients die takes as much technique and expertise as saving lives.”
Although not yet an official prescript, the “Code Death” principle has begun to resonate across the country and throughout the medical community as a prescription for end-of-life care.
My grandmother may have died of natural causes last week, but her death was by no means an entirely natural one. Although science was in no way used to hasten her demise, it was heavily relied upon to manage her passing. She was the beneficiary of Dr. Zitter’s “Code Death” vision realized at the hands of a skilled critical care nurse working in I.C.U. at Heritage Valley Beaver.
The same nurse who had worked so hard the day before to help try to save my grandmother’s life had by now deliberately shifted purpose. The nurse began to not only monitor my grandmother for signs of any distress, she started to watch my grandfather and the rest of the family as well — an inconspicuous presence peering through a glass wall, brief visits to ask how we all were doing.
Even more removed from the nurse was a social worker, busy behind the scenes preparing contingency plans in case my grandmother’s death was not as swift as the medical team expected it would be once her medications were stopped. Arrangements were made with Good Samaritan Hospice, located on the 4th floor of the same building, to provide longer care should it be necessary. Some of the family were given a brief tour of Good Samaritan while others stayed with my grandmother. The floors there are carpeted, decorations and artwork adorn all of the walls; there is a kitchen for families to cook meals, places to sleep overnight to be near your loved one — the patient rooms look more like they belong in a residential home than a hospital complex. It is a serene environment designed specifically for end-of-life care.
Back down in the I.C.U. my grandmother was comfortable, occasionally waking up and talking, often dozing off, sometimes munching on ice chips. The nurse kept her stable as the rest of her grandchildren arrived to visit, to say goodbye. She got to hug each one of them, telling them that she loved them.
When the family was settled, the nurse administered medications to dull any pain my grandmother may otherwise have experienced and to prevent her from feeling shortness of breath. The other medications that were being used to artificially maintain her blood pressure were then slowly reduced, every fifteen minutes over the course of an hour or so.
Several sensors that had been hooked up to monitor her vitals were removed, the rails on her bed were lowered, additional chairs were added by her sides. The curtains were drawn to give our family privacy. Instead of wheeling in a crash cart, the nurse carried in a tray of coffee and muffins. She very discreetly placed boxes of Kleenex around the room.
My grandmother’s calm consciousness slowly began to slip into an ever deeper sleep. Her breaths became shorter while growing further apart as her blood pressure began its gradual decline as predicted.
My grandfather, who had been married to my grandmother for nearly 60 years, was able to hold his little sweet pea’s head as she took her final breaths. My uncle was holding her hand. My mother’s head was laying by her mother’s side as she passed.
I got to embrace them all as it happened.
There were no flashing lights when she died, no loud beeps or buzzes, no rushing of people. Instead the critical care nurse, who had been monitoring her vitals from outside of the room, calmly walked in and placed one hand on my mother’s shoulder and her other on my grandfather’s back, “I’m sorry, she’s gone. I’m sorry.”
As the family began to sob and hug one another, the nurse returned once again to my grandmother, fixing her pillows, straightening her up in the bed, smoothing out her sheets, “Stay here as long as you need to, you can have as much time as you want, if you need me to call anyone for you just let me know […] If other family members want to come to the hospital to see her that’s fine.”
This entire process was part of what Dr. Zitter had envisioned and described in her “Code Death,” organized and deliberate care and comfort provided not only for the patient but also the family, bringing us together one last time to say our final goodbye.
While sitting with someone you love as they die is one of the most difficult of experiences, I left the hospital that day not feeling traumatized, but instead having a sense of calm. My mother said she felt she had done her job as a daughter, her mother had experienced a good death.
There is a famous poem written by Dylan Thomas for his elderly father that exemplifies a common conception that death should be avoided at all costs at all times; furthers a cultural perception that equates death with a defeat that must never be conceded voluntarily. “Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light,” wrote Thomas. “And you, my father, there on the sad height, Curse, bless, me now with your fierce tears, I pray. Do not go gentle into that good night. Rage, rage against the dying of the light.”
Dylan Thomas may have had a way with words, but in my youth I had seen what raging against the dying of the light can look like for the elderly and there is nothing poetic about it.
I have no doubt my grandmother would still be alive today if my family had made different decisions, if we had instead forced her to rage, rage against the dying of the light; if we had insisted the medications be continued, if we had decided on intubation to strengthen her breathing, she would still be with us, or at least her body would.
We could have then held out hope, no matter how false it would have been, that she would one day come home, go back to baking cheesecakes and blueberry muffins and making peanut butter balls for us. We may have found some comfort in that dream for a while, or at least have been able to avoid the stinging grief of her absence for a little longer.
That choice would have been a selfish one, a decision made for us not for her.
I can not help but to feel that far too often families compel healthcare professionals to direct true-life horror shows of medical science. Individuals who no longer have any authority over their own bodies are at times made to suffer terrors and torment — then long after they have lost their humanity, their bodies are kept operating on machines as human test tubes — mere chemical reactions supporting life in purely biological terms.
Sometimes taking “heroic measures” is the least heroic decision a family can make.
My grandmother was spared all of that, partly because of her family who had educated themselves on the subject of end-of-life care, and partly because of that skilled critical care nurse who instead of raging for the light helped my grandmother to gradually dim it.
Death can not always be this way, but this is how death can be far more often than it is; when at all possible, this is probably how death should be. Although the decisions our family had to make were painful ones, they all felt right. The critical care nurse and the doctors who worked with her helped to give my family the gift of a good death for my grandmother. It is a gift I will cherish until the day that I die; a day I can only hope will be one similar to hers.
Healthcare gave my grandmother many quality years with her family she otherwise would not have had, end-of-life care allowed my grandmother to leave this world the way she lived her life… with dignity.
I love you grandmother and I will miss you dearly.
More information on end-of-life care is available At the Intersection of Quantity & Quality, a blog maintained by Dr. Jessica Nutik Zitter.
