This personal story is a reminder of the importance of advanced directives.
Annie died on a beautiful autumn day in 2021. After a year and a half of living alone with limited socialization due to Covid, she was thrilled to leave the city in August for a long-anticipated artists’ mountain retreat. While away, she became violently ill, which warranted a trip to the emergency room. A scan revealed a tear in her esophagus. The local hospital was not equipped to repair it, so Annie was airlifted to a trauma intensive care unit in a suburb less than 25 miles from her city home. When she arrived at the hospital, she had a ruptured esophagus, sepsis, failing kidneys, and had suffered a heart attack. Annie was to be doctored by strangers instead of being cared for by her own physicians in top-ranked hospitals.
Annie's sister, Laura, was her healthcare proxy. She lived across the country and was unable to be physically present for most of Annie’s stay. Laura and other family members (also out of the area) relied wholly on Dr. Smith, the lead physician on Annie’s case, for sound guidance. They trusted and relied on her and her team of experts to help them make the best decisions for their sister.
Annie texted me to see if I could come. It was days before yet another unforeseen Covid protocol severely restricted visitors. When I arrived at the hospital I found that my friend was so weak that she could not stand (even with help) or clench her fist. But, at that time, Annie could still talk. She reached for my hand and locked her clear blue eyes into mine. “Sue,” she said, “I need an advocate.” She lowered her gaze and paused over her thoughtful words, “I feel bad saying this, but I don’t want to live like this.” Again, she looked at me with conviction, “I’ve had a good, long life. I want to go home to my apartment, my kitties. I want to die there. I’m ready.” My advice at that time aligned with what the doctors were telling us. We were hoping for what seemed impossible and felt it would be a betrayal to believe otherwise. We were not ready to let her go. “Annie, hang in there,” I said. “Worst case, you will have six months of rehab, and then you will be okay!” Annie deflated before my eyes. “I don’t want that!” She cried.
Annie was one of 80% of Americans who would like to die at home and one of the 80% who won’t. These issues will touch almost everyone, either personally or through the experiences of a loved one.
During the five weeks she spent in the intensive care unit, Annie endured more than a dozen surgeries. The surgeries happened despite her telling the doctors, nurses, family, and friends that she did not want them and that she was ready to die. Her loving sister took the doctor's advice and approved the surgeries that would give her sister the "best chance to live" while enduring the conflict of knowing it was not what Annie wanted.
The many surgeries/invasive procedures performed on Annie over this period included: multiple intubations, multiple repairs for the torn esophagus, surgery to repair internal bleeding (possibly from the feeding tube insertion), surgery to remove a significant portion of her large intestine, a surgery to correct the wound from the intestinal surgery that was not healing, a procedure to empty her lungs for suspected pneumonia, at least two kidney surgeries, surgeries to suction out her stomach, and one or two “final” surgeries in the days before she died whose sole purpose was to “underscore that there was nothing further to be done,” even though her kidneys were bleeding and all of her organs were failing, including her liver.
Annie was four months shy of her 80th birthday and was not on any medication until her hospitalization. She was an intelligent woman who was ready and willing to die on her terms. Her clarity on this topic never wavered. When she could talk, she voiced her opinions to anyone who would listen. The staff on the ICU floor knew her wishes. She did her best to be clear even when she could not speak. In mid-September, during one of her friend Sheryl’s visits (one of the two allotted visitors), Annie was conscious but could not speak because she was on a mechanical ventilator to assist with her breathing. As Sheryl walked into her ICU room, Annie began to shake her head, “no.” She continued with agitation and determination until Sheryl assured her that “everyone knows and understands you don’t want this. We are doing all we can to get you some comfort as soon as possible.” It was only after hearing Sheryl’s words that Annie calmed.
Dr. Smith’s opinion was that Annie was not in any condition to make a medical decision for herself, including refusing further procedures. Sadly, before her admission to the hospital, Annie did not have a Living Will or an Advance Directive (a legal document that enables people to state their wishes for end-of-life care). Advance Directives were available at the hospital, but Annie was not given the opportunity to complete one. Nor did Annie receive palliative care, even though palliative care services have been available at the hospital since 2015. When I asked if we could call in palliative care, the ICU nurse responded that Annie was not sick enough for hospice. At the time, I didn't know enough to push.
To be clear: palliative care is not synonymous with hospice. Palliative care is for patients at any stage of a life-threatening or chronic illness to help them be comfortable and improve their quality of life while simultaneously providing emotional, social, and spiritual support. Additionally, it is a valuable resource to help the patient and family plan for the future.
Annie was a prime candidate for palliative care. She was in a trauma intensive care unit for five weeks; she suffered extensive injuries to her body and organ failures from the onset, and she was elderly and obese. Annie was ready to die. She was not interested in extending her life if she would not have what she considered a good life. She had goals far more important than merely living more days.
Like too many, Annie did not have a good death. When she died, none of her organs worked without medications or machines, including being hooked up to kidney dialysis. Still, she endured surgeries while in this critical state at the recommendation of Dr. Smith and her team. By the time Dr. Smith advised Annie’s family that it was time to say goodbye, it was an easy decision for them to disconnect life support. Annie was not Annie anymore.
This story is an important reminder that we are responsible not only for how we live the days of our life but also for planning our exit strategy. All adults should complete advance medical directives, including a living will and a health care proxy (often a loved one), to ensure their health wishes are honored. Although difficult, these essential conversations should take place in advance of a critical health situation. Often in emergencies, a loved one thinks they are doing the best thing to “try everything” to save the patient, despite the consequences. Loved ones, physicians, and your attorney should have copies of your advance directives. Some people even travel with their advance directives in the event of an emergency.
Intensive care physicians are focused on saving lives, yet approximately one out of five patients die while under their care. Despite this staggering statistic, many physicians are not versed in palliative care, perhaps because it is not a required rotation in most medical schools. Although palliative care departments exist in many hospitals, physicians are not required to incorporate them into their patient care plans. Since this resource was not in Dr. Smith’s toolbox, Annie did not receive care from the underutilized palliative care department at her hospital.
Change begins with education. Some suggestions to move to a more patient-centered environment include the following:
Change begins with education. Some suggestions include the following:
Medical schools to implement palliative care requirements and rotations in medical school. Medical centers should require continuing education courses in palliative care.
Red flags trigger palliative care for a patient at a certain point in their hospital stay (i.e., ICU for longer than two weeks).
“Incoming” packets for distribution to patients and their families to let them know what services are available (Advance Directives, palliative care services, etc.)
Required Communication with Compassion and Active Listening courses provided in medical schools and hospitals. Studies show that more than 80% of recently hospitalized patients believe that compassionate medical care can make a life-or-death difference.
While it is too late for Annie, it is not too late for our loved ones and us. Heartbreaking patient experiences can be minimized by disrupting existing practices one hospital at a time.
Free Advance Directive forms from each state are available online.
