Writing the Final Chapter

by Anita Albanese, MD

Death. A word that is not often talked about in American culture before one dies. Growing up, I was inundated by the notion that modern medicine was the answer to everything. People were now able to survive severe trauma like gunshot wounds and motor vehicle accidents. Things like cancer and infectious diseases were also something that were just a diagnosis with a cure to rid all your troubles. Whether I chalk up my notions of “anything is survivable” to naivety of being young or the perception portrayed by the culture of the United States, I still had to learn the hard way that we all do die one day. Nonetheless, you go to the store to pick up a card for your loved one, and the notion is always “Get well soon,” “I will keep you in my thoughts,” or “I will pray for you.” Then there are the cards for after they have passed saying, “I am sorry for your loss.” There is no in-between. We are always trying to do everything in our power to prolong and save life until it is indeed gone. I went into medical school with the idea I would help save lives. And although it has not been easy, I now have learned to also talk with families about writing the final chapter and confronting death with the idea that they can write the final chapter of their life with the opportunity to say their final goodbyes with a peaceful transition from life to death.

My perspective began to shift when I found out my uncle had kidney cancer. I was in college, and my dad sat us down to tell us that his brother had cancer. My dad spent countless hours at the computer looking up the treatments my uncle was undergoing to understand how they might help. I tried to reassure my dad that everything would be okay because cancer was no longer a death sentence. My uncle was young and one of the healthiest people I knew. He surely would survive this. Without warning, my uncle quickly declined and transitioned to hospice. His passing was much quicker than any of us anticipated. My family missed his passing by only a couple hours. I saw how much this impacted my dad, aunt, and my grandmother. Just mere minutes cost them the opportunity to say goodbye. Those left behind were left with varying emotions from grief to anger to confusion.

Not too long after the passing of my uncle, my grandma started to decline. She had severe debilitation from arthritis and found herself in her last year of life bouncing from skilled nursing facility to hospital every other week. She underwent many surgeries, procedures, and interventions with the notion that “she would get better” and eventually “go back home.” I was only a first-year medical student at the time. I did not have any useful medical knowledge and cannot recall if the doctors ever spoke to us about goals of care. She remained “full code” during much of this year meaning that if her heart were to stop or she needed to be resuscitated, they were to do everything in their power to save her life regardless of the intervention. Finally, a full year after her end-of-life journey began, her medical team expressed deep concerns that she was indeed going to die. That we should consider stopping all interventions and make her do not resuscitate, do no intubate, comfort care only. We then transitioned her to hospice. We still did not quite understand what this would mean. Would she pass instantly or live another 3 months? Within 2 days going to hospice, she died peacefully with some of her children at her bedside to be with her transitioning from life to death.

Modern medicine, although amazing and possibly lifesaving, also has a cost—not just financially but emotionally, physically, and mentally when measures are futile and not reaching the intended goals. In retrospect, we allowed my grandma to undergo several interventions that prolonged pain and suffering. Our understanding was that if we loved her, we needed to “do everything possible” even if that meant keeping her life sustained in a care facility with everything they could offer. This was a part of our culture. My immediate family reflected on this and realized that talking about death ahead of time is important. We never really knew if my grandma wanted all of this or if she would have wanted the least possible intervention and to pass on. We, as a family, were not known to be transparent about our wishes. This experience taught us that we needed to embrace our inevitable future and understand what we wanted when facing death. Although she did pass with family at bedside, we still feel like we did not quite get her final chapter right knowing the extent to which she lived in daily pain for a year.

As a result of these experiences, I have vowed to be as open and transparent with my patients and their families when a patient is facing death. We are all going to die. Regardless, making these decisions is incredibly difficult for everyone involved. During my time on the Family Medicine Service and Medical Intensive Care Unit, I have learned that, although it is one of the most emotionally challenging part of my role as a doctor, helping create goals of care with patients and their families is the aspect of their care I feel most honored and privileged to share with them. As a medical team, when we are discussing the plan for a patient, there is always that pause that comes with, “I think we have done all that we can for this patient. They are not getting better. I think it’s time to talk with them and their family about goals of care.” When patients are first admitted to the hospital, the whole goal is to make them feel better and get them home. Whether early on or later in their hospitalization, for some, we come to realize that this is their final chapter. And with each time, it never gets easier to sit down and talk with the family and spend anywhere from minutes to weeks deciding on what is best course of action. Some people will die alone whether it be a tragic accident, in their sleep, or a sudden heart attack. I tell them that they have the unique privilege of being able to have a dignified death where they can say their goodbyes and have their family at bedside. Nonetheless, there is no right answer, and to fight another day is not wrong. What matters is honoring the wishes of the patient who may die and making sure this is what they would want.

What sticks with me is the patients and their families. Each conversation, I walk into nervous having to tell the family the hardest truth they will ever have to hear, discussing the many courses of action we can take. But when they ask what they should do, my own experiences are blurred, and I see myself within them. Scared. Confused. Devastated. In a haze. I tell them with my voice cracking that this is an impossible decision to make and what will comfort them is making decisions that they know are consistent with what their loved one would want.

No matter the years of experience, in the unit where a patient goes “comfort care” there is a feeling of this deep sadness among the nurses and doctors that the hope of them getting better is gone but also relief that the patient will no longer suffer through their devastating illness. We provide measures to keep the patient comfortable as we remove all life sustaining measures. Then, we let the family have their privacy and watch the monitors from outside the room. Our stomachs dropping with deep pain and grief watching as their heart rate slows into its final beats knowing that someone is losing a parent, spouse, sibling, best friend. Nothing will take that pain away, but there is comfort in knowing they have closure. As the monitors final show no signs of life, the nurse will come over to me and say it is time to perform the death exam. Walking into the room, I hear the devastation as their cries are like those of no other. Slowly I examine the patient for signs of life. And as my exam ends, I take a deep breath as I prepare to look at the clock to say, “Time of death…” with a lump in my throat and tears in my eyes. This is the end of their story.

Every person and family have the right to continue with all possible interventions. But discussing what those interventions are doing and the possible outcomes is important to determine if this is what their loved one would want. In some lucky cases, these decisions for themselves from paperwork such as “advanced directives” or “living wills” and even when they still have capacity to make their own decisions verbally. Things change. Priorities change. Life changes. I would urge anyone to start these conversations early and keep them on going through the lifetime.

Dr. Anita Michelle Albanese is from Las Vegas, Nevada. She completed her undergraduate degrees in Chemical Engineering and Neuroscience at the University of Nevada, Reno. Then, she completed her medical degree as a part of the charter class of the University of Nevada Las Vegas School of Medicine. Her medical interests include full-spectrum family medicine in an urban underserved environment including obstetrics, women’s health, transgender care, LGBTQ+ health, adolescent medicine, geriatrics, Latino health, healthcare policy, research, and medical education. She enjoys cooking, traveling, music festivals, hiking, camping, skiing, scuba diving, reading dystopian novels, and, of course, watching TV/movies through all the streaming services. She chose the University of Utah because of the wonderful opportunities to get full-spectrum training from passionate family medicine doctors.

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