Death is a immense part of life and everyone is tended to experience it during their lifetime. Alas, some experience the trauma of death too soon. Everyone has their own take with dealing with death, dealing with the loss of a friends or a loved one. Some hide their feelings, some show them openly, and many just need time and space to handle the situation. There are stages of dealing with the loss of someone close to an individual but, of course, there are differences in every person. Research has shown that children who lose a loved one “experience a wide range of emotional and behavioral symptom and the child often experiences an increase in anxiety and concerns for the safety of other family members and experience fears around separation” (Akerman). Everyone has the potential to grow from the trials and tribulations of life and death. When children are exposed to death it can result in myriad of ways. It can lead to bereavement, an emotional state of longing and deprivation that is characterized by feelings of grief and a deep sense of loss.
Death is inevitable for everyone. The thought becomes unnerving when one takes time to think that eventually, it will happen to them. Younger adults and children tend to blow it off, thinking that because they are young, it won’t happen to them. Dying is certain, but the timing is not. As people become older, the fear of dying in this death-denying culture becomes more prominent in their thought. However, what if illness and death become sooner than we thought, or they were unprepared for what was to come? People want to leave Earth as peacefully and painlessly as possible. If the patient is at the point in their life that they need medical equipment to sustain life to keep organs running while spending thousands of dollars of a burden to their family, then what is their quality of life? This is a continually rising ethical concern in the medical field. It’s a matter of sustaining life in hopes that a patient will recover versus “giving up” and letting the patient die naturally and faster. This becomes even more challenging when the actual patient is unable to say their wishes and the literal life-or-death question is at hand of a loved one watching their friend or family member be kept alive from machines. Culture today seems to be too optimistic regarding death. We are so afraid of dying that we have no choice but to be a culture of life. Today’s American society is a death-denying culture that cannot determine when it is the correct time to finally let go.
Like many people, I faced this problem firsthand. My grandfather, one of the most influential people in my decision to pursue nursing, went through this experience in November of 2013, the day after Thanksgiving. He went to the Emergency Room not feeling well with severe edema. Several days later, he was an inpatient at a hospital several minutes away from our house with predominantly kidney and slight respiratory difficulties. With that, however, he was never alone, even in his private room. My grandmother, uncles, aunts, cousins, and I all took shifts visiting my grandfather, so he was never alone. Some days were worse than others, but most days we were able to have conversations with him as he stayed his normal pessimistic, sarcastic, singing, family-loving self. By now it was mid-December. My immediate family went to Los Angeles for a long weekend since he seemed to be released soon. At LAX, we got the call that my grandfather was going to the Intensive Care Unit with extremely low blood pressure.
When we landed in Pittsburgh, we drove straight to the ICU to see him. His blood pressure was a staggeringly low 80/36 but slightly varied from time to time. Before this time, I had never seen anyone paler and closer to death. We took turns saying our final goodbyes and sitting in the twenty-four hours waiting room expecting a faculty member to tell us he passed; they never came. We finally went home. Later his blood pressure rose, he regained consciousness and was stable.
His kidneys slowly started shutting down, and dialysis was his only choice. He was put on the filtering machine several hours a day; we spent his 86th birthday in mid-December in the ICU with him. For such a morbid and death associated place, our family made the place as comfortable as possible. We overfilled his room with people, singing, and love, surrounding his bed and life-preserving technology.
Several days later, the doctors pulled my grandmother, aunt, mother and sister aside into a private room. By now, it was certain that dialysis was the only thing keeping him alive. If the machine stopped, so would his body after a few days. He was told this information and replied, “I’ll do whatever I can to stay with my family longer.” It continued.
By now, family from around the country was coming to visit for what seemed like the last time. My grandfather did not specifically say how long he wanted to live, but as long as he could see his family he would continue to push. One of his lifelong goals was to be at a grandchild’s wedding and eventually become a great-grandfather. From the looks of it, it was not going to be the case. He progressively declined to the point where his wife of sixty-four years told him how we would be okay, and he can leave us forever whenever he was ready. His return comment was, “I’m not worried about you, damn it. I’m the one dying here.”
It got all of us chuckling in such a sad time, but we were still relieved to know that he was still his snarky self and able to make jokes. Within several days, he made a complete turnaround and was released to a regular room. Months later, he returned home and deemed a “Christmas Miracle” at the hospital. In the challenging case of life or death in respect to life-saving technology, my grandfather was the exception every family wishes for. He passed away at home through Hospice, with family around him singing Barbershop tunes on July 25, 2014, after given a “death estimate” of a few days eight months earlier.
Throughout history and in continuation of it, death is and forever will be liminal. No amount of viewing death in entertainment or the hospital can change that. The empty, lifeless body that was once a loved one won’t have the same effect as it previously had. One of the newest dilemmas in today’s society is when to decide is when to determine when the person is dead. No heartbeat or breathing equals demise, but if a machine is doing all of the work is it worth keeping the person alive? The grey area in medicine is determining that. Hundreds of thousands of lives are saved by technology with a physical machine acting as one or even multiple organs. In these cases, the actual patient is typically unresponsive while a surrogate oversees their life. In America’s culture of life viewpoint, using life-saving care can sometimes lead to a poorer quality of life for the patient even though the proxy’s goal is sustaining their life.
With technology constantly advancing and evolving, people are living much longer than before. According to the magazine USA Today, life expectancy reached a new high at 78.8 years, with women at 81 and men at 76. It also emphasizes the fact that the ten leading causes of death – heart disease, cancer, chronic lower respiratory diseases, stroke, unintentional injuries, Alzheimer 's disease, diabetes, influenza and pneumonia, kidney disease and suicide - remained the same, but the incidents of them decreased causing the decrease of mortality rates As great as the facts are, it also adds to the problem our culture of life obsesses about. The view about living longer clarifies why people will strive to outlive their terminal illness, they believe that they are the exception and can beat the estimate the physician gives them.
Is trying to outlive their fatal disease worth the pain it causes for the patient? A Frontline video gave the alarming statistic: “respiratory failure is the most common cause of ICU admission and that 100,000 people are on ventilators nationally” (“Facing Death”). Being on a ventilator while the patient is at least unable to verbally communicate ultimately has a giant influence on the quality of life. To surpass a death estimate would make one think that their health value would improve, it surprisingly does the opposite. In Atul Gawande’s book, Being Mortal, he wrote the statistics given by the national Coping with Cancer project. The results were showing how terminally ill patients who needed much medical interventions and assistance “had a substantially worse quality of life in their last week than those received no such intervention” (158). Aside from not being able to fully speak, a bedridden patient can lose strength resulting in atrophy and weakness in the extremities. These little factors and unknown statistics deceive acute care patients into living in a less pleasant culture of life when they should have let go with better quality earlier.
In hospitals and all forms of health care, the patient has the primary consequence. However, it changes more than just the patient. Therefore, everyone around the patient - physicians, possibly the community, but certainly family - alters in one way or another. The decision to push life adds stressors to the family. In one study done, researchers focused on the impact the Intensive Care Unit had on families rather than the patient. The factors examined included sleeping, religious preferences, eating, physical patterns, emotional support, and variation in family roles. Based off of survey results, a majority of family members ate less as a whole while simultaneously exercising less, and instead increased in waiting, thinking, and praying. Given the change to rate alertness and wakefulness, “very tired” (58%) and “exhausted” (26%) were the two predominant responses (Van Horn, A Tesh). Families alongside the patient are affected mentally and emotionally through medical interventions.
Another burden added to the family to worry about is financial instability. Health is not cheap. The Frontline Facing Death gave the numerical data that, “Patients in the ICUs occupy between 5 and 10 percent of inpatient beds in hospitals, but account for 20 to 35 percent of total hospital costs.” Gawande added to the data, talking about how with breast cancer study, “for a patient whose cancer proves fatal… the average of $94,000 during the last year of life” (155). It is no wonder why families are greatly affected by inpatient in the ICU and return have an increased chance of depression. Once the patient finally passes away, no one wants to see the medical bill in addition to funeral costs. It also hurts to realize that what seems to be the pain and suffering of a loved one could have ended earlier through the help of palliative care.
Palliative care, most commonly known as Hospice, is specialized medical care for patients with a terminal illness. Ninety-four percent of the patients return to pass away at home with a family with a palliative care nurse available 24/7. The goal of the program is to decrease the stress of the ailment, relieve symptoms, and provide a better quality of life for the patient. The team also tries to aid in the transition for the family. The Center to Advance Palliative Care (CAPC) expresses the numbers as to how well the field is growing. It states, “In the last 15 years the field of palliative care has had stunning growth… it sees the person beyond the disease” (“About Palliative Care”). The program first began in 1974 and has roughly 6,000 today. The choice to move to Hospice care belongs to the patient, but the physician generally gives them a life expectancy of fewer than 6 months. Once on Hospice, the patient does not receive a medical intervention, only pain pills to make them the most comfortable. The National Hospice and Palliative Care Organization gives the motto: “Hospice is caring, not curing.” If the patient wishes to return to regular medical treatment, he or she can be discharged from the program to continue life or therapy. Just over half of the 1.7 million of the patients passed away within two weeks while only ten percent lived past 180 days on Hospice Care. Over four-fifths of the patients were older than 65 which may be a factor of our death denial culture if someone younger is diagnosed with a terminal illness (“Facts on Hospice and Palliative Care”).
In return for being a death-denying culture, the United States promotes living. In reality, everyone is going to die in one form or another varying in time depending on the person. It may occur instantly or have a dragging process. Regardless of when it should happen, we need to be prepared. Living wills are the answer. These are essentially documented wishes of what you would like for your health. With wants laid out legally, this could save families the pressure of deciding life or death for the unresponsive person and potentially save legal battles, or at the least, disagreements between families. The Washington Post agrees with this idea. An article by them supposed “only 7 percent of those 18 to 29 have an advanced directive. But, at age 18, a person is an adult for purposes of medical decision-making” (“For Young and Old”). The article later explains how if one is not written, then in case of a medical emergency, in most states, a parent oversees the lifesaving or ending choice. As stated above, without the surrogate knowing, it may come as a shock and also receives a lot of pressure in deciding fate.
If these documents are the potential to change the way society views death, then there should be a much better way to make living wills accessible. The United States has always had the option to make these since the 1960s; however, culture has been in a constant state of death denial, so not nearly enough people have one. According to the Center for Disease control in 2011, “population-based prevalence estimates of completed advance directives among adults in the United States range from 5% to 15%.” These also vary greatly with the elderly generation having a much high percentage than younger adults (Jones). Americans seem very superstitious about these, almost as if they have a voodoo effect. It appears that people are hesitant, assuming that if they write one, then they are doomed to die soon. That is not how it works, and the stigma of living wills needs to be eliminated. As a result, it should be required to have a living will. DMVs would be the ideal spot to bring up the life-deciding option. They bring up the question of organ donation when someone gets their license and fills out the papers when someone is old enough to register to vote. Likewise, they could impose the necessity of living wills and have the document created there with a legal representative present. If the percentage of advanced directives moves from 5% to more or less 100%, then there will be a shift to help America eradicate the terror of dying.
As little as culture wants to admit it, the disease is always in control no matter how hard we try. Hospitals only find loopholes as an indirect path. In all aspects, particularly death, culture emphasizes the idea of never letting go and to fight back. Whether against aging or illness, the idea of fighting disease at all costs the United States billions of dollars along with stressors to family members. Witnessing it firsthand through my grandfather, our family changed as a whole, and we just finished paying the hospital bills – two years later. Although the idea may scare some people, the push or obligation of living wills has the opportunity to significantly affect the paradigm of our death denial culture. With this document established, each person in society for at least several minutes will acknowledge the fact that one day they will die. The timing will never be guaranteed, but death will. Advanced directives can save financial burden and family stress in today’s culture of life. It will eliminate anxiety from proxies and prepare each person for their own death.
