As we’ve settled into our new location in southern Utah, we’ve been able to check out several branches of the library system in the area. Libraries can be a bit dicey because of all the toxins that books hang on to in their pages (for example, one of the books I picked up recently was heavily scented of the perfume of the most recent patron who had read it). I look forward to someday when these things won’t bother me again, but for now we have to be careful. I check out new reads for myself (not entirely a bad thing), and any books that we get for our son go in a plastic bin that we bring to the library and carry home, where they stay when they’re not being read.
One visit at the library I picked up a new book that piqued my interest on end-of-life care. My short stint in healthcare was with older people, and although I never had to administer any life-saving measures, I was aware of who in my care wanted intervention – if needed – to extend their life, and who didn’t.
Dr. Jessica Zitter, MD, describes herself as an “accidental activist” who didn’t set out in her career to change the culture of medicine, but her career led her in a direction she never imagined. She recounts her experience in her book, Extreme Measures.
As someone who “always wanted to save lives”, Dr. Zitter’s medical career in over 20 hospitals reached a crisis of ethics one day as she prepared to perform a procedure on a woman who was essentially dying. As a new attending physician at University Hospital in Newark, NJ, a woman was brought to her ICU with failing kidneys and her liver shutting down. If Dr. Zitter was going to attempt to extend this woman’s life, dialysis was a must, and stat. Without really considering how much she was really helping the patient, Dr. Zitter quickly got the husband’s consent and prepared to insert a catheter into the woman’s jungular vein.
As she leaned in to the woman’s neck with needle in-hand, a member of the Family Support Team in the ICU appeared in the doorway. Lifting an imaginary phone to her ear, this advanced practice registered nurse (APRN), Pat, glared at Dr. Zitter and said, “Nine-one-one, get me the police. They’re torturing a patient in the ICU at University Hospital.”
Dr. Zitter was stunned at the accusation of torture and instantly felt shame and self-doubt. She realized that the procedure she was about to perform, in her zeal to just to do something to help, may actually have been just causing trauma and harm to the woman’s body in her final hours of life. Realizing that there was no turning back if she wanted to save face in front of the attending resident and the woman’s husband, she proceeded to complete the procedure.
But it didn’t extend the patient’s life.
However, Dr. Zitter says, it changed hers.
As Dr. Zitter’s career changed throughout the years, she found herself in a place where she thought it important to become certified in the field of hospice and palliative care medicine. Palliative care is a relatively new specialty, with the American Board of Internal Medicine recognizing it for the first time in 2008.
Palliative care is an interdisciplinary approach to managing suffering in the context of medical illness, whether physical, emotional, familial, or spiritual. Social workers, chaplains, nurses, and physicians work collaboratively to attend to the needs of the whole patient rather than just her failing organs. Communication is a central tent of the specialty. Palliative care isn’t only for the dying: any patient with serious symptoms or communication needs can benefit. ¹
The specialty of palliative care eventually became Dr. Zitter’s passion, and 3/4 of Extreme Measures is case after case of a dying individual that Dr. Zitter worked with personally. Perhaps it sounds like a morbid read, but I found her experiences fascinating.
In our current medical culture, the old and the ill are put on what Dr. Zitter calls “the end-of-life conveyor belt”. They are intubated, catheterized, and even shelved away in care facilities to live out their final days alone, confused, and often in pain. In her work Dr. Zitter has learned to understand that what patients fear more than death itself is the prospect of dying badly.²
Initially, understandably, most patients and their families fear death. However, it is interesting to know that often patients fear the suffering that death with interventions may bring more than the actual process of dying. When/if life is prolonged by machines or other measures family members sometimes fear being the ones to make crucial decisions, leaving them feeling like the one responsible for that death.
Extreme Measures also highlights some of the doctor’s fears when they are faced with decisions that would lead to this “end-of-life conveyor belt”. They fear if they don’t go to extreme measures, it’s like giving up and letting patients down. A hesitation that doctors often have is communicating to patients and their families that they or their loved one is likely dying. Avoiding this difficult conversation may help eliminate awkwardness that a cardiologist or other specialist might feel by admitting their helplessness in saving a person’s life. But it can also lead to family members’ shock when death occurs seemingly suddenly. Doctors also may fear liability issues, especially from angered family members who feel that the situation should have been handled differently.
Extreme Measures helped me think more critically about ICU procedures and end-of-life care. Dr. Zitter highlights the importance of talking to family about end-of-life choices and how important it is for family to know a person’s specific desires. But, she admits her own hesitation with filling out her advanced directive (which she still hadn’t finished at time of publication) outlining her own desires should she be unable to express them herself.
Its encouraging message that death can be a peaceful experience is reassuring — that even in death, we can have resilience.
¹ Zitter, Jessica Nutik. “The End-of-Life Conveyor Belt.” Extreme Measures: Finding a Better Path to the End of Life, Avery, an Imprint of Penguin Random House, 2017, p. 47.
²Zitter, Jessica Nutik. “Extreme Measures: Finding a Better Path to the End of Life.” Extreme Measures: Finding a Better Path to the End of Life, Avery, an Imprint of Penguin Random House, 2017. Front Flyleaf