With more than 20 years of experience as a hospice nurse, palliative care professional, and founder of the Doulagivers Institute, Suzanne B. O’Brien, RN has trained more than 350,000 people in what can be done to help the dying person, caregiver and other loved ones so they may move through each stage with as much comfort and ease as possible. In The Good Death, O’Brien provides a comprehensive plan and the empowering knowledge to make a beautiful, sacred and profound experience for everyone involved.
The following is adapted from The Good Death by Suzanne B. O'Brien, RN. Copyright Suzanne B. O'Brien, RN. Used with permission of Little, Brown Spark, an imprint of Little, Brown and Company. New York, NY. All rights reserved.
"The most beautiful and profound emotion we can experience is the sensation of the mystical." — Albert Einstein
My patient, Vivian, was scheduled for exploratory surgery as her entire family gathered in her oncology ward hospital room, feeling a mixture of anxiety and hope. But when I examined her, I could see the tumors visibly protruding through the skin of her abdomen. There was no question that her intestinal cancer had reached an advanced stage.
Despite my efforts to find a suitable spot on her stomach to listen for bowel sounds with my stethoscope, I already knew the likelihood of detecting any was slim. The cancer had seized control of this elderly woman’s body, and it was clear her life was nearing its end.
Yet, because of the fear of death and the lack of a truthful conversation between the family and the doctor, everyone involved pretended that death was either not happening or at least optional. As a result, Vivian’s care went into “default” or what I call the “medical treadmill,” subjecting her to a futile major surgical procedure that would only confirm what we already knew. I had no doubt the surgeon would see that the cancer was widespread in her body, and he would just close her back up because there was nothing more he could do. And that’s exactly what happened.
For Vivian and her family, this was not a good death. It was a heart- wrenching, harrowing one. And time and again, this is what I saw in my career as a nurse.
Why were we offering false hope to this woman and her family? Why were we subjecting her to the rigors, pain, and recovery of an invasive surgery that would do her no good? Why does the medical field do this repeatedly?
Fueled by our society’s intense fear of dying, our end-of-life care doesn’t work well because we lack an understanding of the difference between keeping people alive and allowing them to live with quality of life. Instead, we expect doctors to somehow fix the unfixable and to defy the inevitable. In cases like Vivian’s, there would always come a point when their efforts did more harm than good.
Clearly, our end-of-life care is dysfunctional, and this dysfunction is preventing most people from having a good death.
In this chapter, let’s talk about this fear, how it makes end of life even harder, and how we can begin to quell it by learning more about what happens as we near death. In other words, we can become less fearful of death if we embrace what we do know about it.
Why Are We So Afraid?
Has the language we use within the medical system inadvertently contributed to our subconscious war with death? We speak of “losing battles” against illnesses, urging patients to fight. And when all options have been exhausted, we apologize for our inability to offer further assistance. In this relentless fight, it seems that death has become the ultimate adversary. Regardless of our wishes or efforts, it’s an enemy that will always emerge victorious in the end, despite countless treatments, procedures, and surgeries. We cannot beat it. And even though we can sometimes postpone it, does it truly make sense to do that at all costs regardless of the quality of life during the time we have left? While doctors should certainly do what they can, there does come that moment when letting go and accepting the inevitable would be the most compassionate choice for the patient, the patient’s loved ones, and also for the doctor.
As an oncology nurse, I have witnessed overwhelming fear of death in my patients, in their loved ones, and in medical professionals. It has become clear to me that this fear often leads to misguided decisions and unnecessary procedures and treatments that cause more pain, discomfort, and side effects in patients who still ultimately succumb to their illnesses.
Perhaps the real source of our fear is the fact that we have stripped death of its natural place in the journey of life. By trying to shield ourselves from it and by using language that reinforces our fears, we may have unknowingly nurtured an unjustified dread about this sacred and integral part of life’s progression.
‘As an oncology nurse, I have witnessed overwhelming fear of death in my patients, in their loved ones, and in medical professionals.’
Our unhealthy fear prevents us from having necessary conversations about the end of life and from embracing the timeless wisdom death can offer us. This fear prevents us from caring for each other in a way that lessens the suffering and increases the quality of life of all involved, while maintaining the dignity of the patient.
It hasn’t always been like this. In the distant past, the way we cared for those who were dying wasn’t as dysfunctional as it is now. It’s important that we look back for a vision of how we might move forward with more grace and less fear.
How Did We Get Here?
Up until about a 100 years ago, caring for the dying was a skill passed down through generations from grandparents to their children and grandchildren. Death was embraced by rituals that allowed loved ones and communities to gather together and comfort each other toward the end.
When illness struck, people were historically cared for in the comfort of their own homes. They died surrounded by loved ones, and their wakes were even held in the home. People who came to the house to pay their respects congregated in the “living room” before entering the parlor where the deceased was laid out for viewing. This is why we all have a “living room” in our homes.
With the progression of science, however, death has become increasingly medicalized, stripping away its humanity. With the advancements of modern medicine, life expectancy in the US soared from about 48 years in 1900 to about 80 years today. Worldwide, life expectancy was only 32 years in 1900 and increased to 71 years by 2021. While this is undoubtedly a remarkable achievement that we all benefit from, it has also brought about significant changes in the way we approach death.
Families are left feeling disempowered as medical systems take control and send the terminally ill to medical institutions designed to treat and cure ailments even when it’s clear the end is near. Modern medicine’s primary focus is to keep people breathing at all costs, but those costs are great—and not just financial. One of those costs is that concentrating on keeping people alive means we fail to provide the support that those transitioning out of this world truly need.
Since medical school is designed to equip doctors with the skills to prolong life, there are generally no courses on the topic of death. During their education, medical students endure demanding schedules, rigorous classes, and extensive internships with long hours. This grueling process, lasting anywhere from 6 to 10 years depending on their chosen specialty, leaves little room for “outside the box” thinking. It’s no wonder that doctors are set up for inevitable failure when it comes to appropriately treating death and the dying. It’s an unfair burden for them to bear. After all, they are human, too.
‘The following day, she died peacefully with her loved ones by her side and with her dignity and ribs still intact.’
The current fragmented healthcare system fails to allocate enough time for discussions about end-of-life care, and doctors are not trained for those discussions. Instead, they are constrained by strict time limits when interacting with patients, sometimes as little as 15 minutes. Informing someone and their family of a terminal diagnosis, along with the impossibility of reversing the disease, can’t be condensed into such a short conversation. And when it is, it’s unbearably insensitive.
Of course, this is a symptom of our societal lack of awareness about death and lack of willingness to discuss it openly, as well as the fact that doctors are often perceived as failures if their patients die, regardless of age or diagnosis. All of this leads doctors to avoid broaching the subject altogether. It would be much more compassionate for all involved if healthcare providers felt they could be transparent about the limitations of aggressive treatments when the chances of disease reversal are minimal at best. People like Vivian would then be spared painful surgeries that medical professionals know are pointless but feel obligated to perform; this medical treadmill has become the norm since there is no conversation about death between the patient, family, and doctor.
In end-of-life healthcare, there is a delicate balance between being helpful and potentially causing harm. The question is: Who should decide where that line is drawn?
In my opinion, responsibility for end-of-life care lies with both the individual and their healthcare providers. It’s crucial for people to reflect on their own values and preferences, determining what quality of life means for them personally. To ensure these wishes are honored, it’s essential to document them in advance directives (which we will discuss in the next chapter) and talk about them openly with family members and doctors.
To do this, we must get past our aversion to accepting the inevitable. When we talk about death frankly and compassionately without pretending that doctors can work miracles, we save ourselves a lot of pain in the future.
For example, Alice was a 93-year-old woman with advanced breast cancer in my hospital’s oncology unit. Despite her frailty and failing health, she didn’t have a do not resuscitate (DNR) order in place.
As a nurse familiar with end-of-life situations, I could foresee that she was close to a critical point. Her lab numbers were declining, she appeared pale and unresponsive, and her journey with cancer was nearing its end. But without a DNR order, I was legally obligated to perform cardiopulmonary resuscitation (CPR) if her heart stopped. CPR was originally developed to save healthy individuals who experienced sudden cardiac arrest. It has since become a standard procedure in all healthcare situations, including terminal ones like Alice’s. This raises the question of its purpose and the quality of life that sometimes results.
Performing CPR on Alice would have involved breaking her ribs and potentially placing her on a machine to keep her alive—a machine that she would undoubtedly be unable to survive without. This would leave her family with the eventual decision of whether or when to turn off the machine. What kind of life would that be when death was still inevitable in a short period of time?
In my role in the oncology unit, I would often inform the doctors when I believed a patient was nearing the end, and I would advocate for an honest discussion with the family about signing a DNR order if one was not already in place. Of course, I knew these conversations would have been so much kinder and less stressful if held way before someone was admitted to the hospital.
In Alice’s case, the doctor eventually recognized the need for a DNR order and was able to obtain the family’s signature. The following day, she died peacefully with her loved ones by her side and with her dignity and ribs still intact. It was a good death. What if that could be our ultimate goal rather than striving for a breathing body? If the problem lies in the unrealistic expectation of prolonging life at all costs, perhaps managing expectations is the solution.
Could withholding honesty about someone’s impending death be part of the harm that doctors have taken an oath not to do? I know of one instance when a woman’s mother had gone through numerous cancer surgeries. An oncologist told her, “From a scientist’s point of view, I could tell you to try this next surgery for your mother. But as a human being, I’m going to tell you to go home and make her comfortable.”
In my opinion, it’s time to bring back the awareness that death is not a medical experience— it’s a human one.
Suzanne B. O’Brien, RN, is the founder & CEO of Doulagivers Institute. Her life's mission is to increase access to high quality end-of-life education and care for patients and families throughout the world. She has developed free resources and trainings for family caregivers and practitioners from her firsthand experience as a hospice and oncology nurse and palliative care professional at the bedsides of more than 1,000 end of life patients. She is also a founding member of the National Hospice and Palliative Care Organization’s End of Life Doula Council and a founding member and Former VP of the National End of Life Doula Alliance.
Photo credit: Shutterstock/Robert Kneschke
