In 1929, a young woman entered Koch Hospital in St. Louis, Missouri. Her symptoms may have included coughing, difficulty breathing, and fatigue. She was diagnosed with pulmonary tuberculosis. The disease is caused by a bacterium and, at the time, had no cure. Her doctor admitted her to a hospital that specialized in the care and quarantine of tuberculosis patients for a long-term stay. She would likely have been prescribed rest, regular meals, and good air. She spent ten months there until succumbing to her disease at the age of twenty-seven.
In 2015, an elderly woman entered a hospital near Orlando, Florida. She was experiencing the symptoms of chronic diseases associated with old age, including Alzheimer’s Disease. In the months and years leading up to her death, she may have used medications to manage her symptoms and may have experienced confusion and anxiety. In the days before death, she was likely heavily medicated to ease her discomfort and may have had little awareness of her surroundings. Under the watchful eye of medical staff and family, she died at the age of eighty-seven.
The two women died eighty years apart. Only one had access to advanced modern medicine: she lived a longer and healthier life, dying in old age of chronic disease. But was her death any better for it? Anthropologists may have found the answer to this question in an unlikely place: the women’s hair. A new study of stress hormones in human hair from dead individuals across nearly a century may hold the answer to how the experience of dying has changed (or not) with improvements in modern medicine.
Few would contest that advancements in modern medicine have improved the lives of people today. The development of antibiotics, vaccines, cancer treatments, and more means that people are living longer and healthier lives than at any point in the past. According to the National Center for Health Statistics, people in the United States today live on average twenty years longer than in the 1920s and are more likely to die of chronic conditions than of infections. One need only look at the rapid development of the COVID-19 vaccines and treatments to be awed by the pace of advancement. In its goal of prolonging life, modern medicine has undoubtedly succeeded.
However, modern medicine focuses little on dying people and the dying process. The reasons are many and varied but the consequences are bleak. Luckily, anthropologists may be able to shed light on the dying period by studying dead individuals. The bodies of dead individuals are available from throughout history and are perfect for studying the changes associated with developments in modern medicine. While the dead cannot speak, their experience can be inferred by measuring stress hormones in their hair.
What about Dying
Because modern medicine tends to view death as a failure of the system, it focuses on prolonging life, often at a dying person’s expense. Modern medicine’s insistence on battling death creates tension between cure, alleviating pain, prolonging life, and accepting death. It also means that there is little interest in understanding the dying period. For these and other reasons, the American Medical Association has argued that the care of dying people in the United States is inadequate. Additionally, a poor understanding of the dying period combined with the aggressive tactics of modern medicine to cure, rather than care, for dying people means that many Americans, “fear how they die more than death itself.”
Palliative care developed as a separate field of medicine in 1987 to respond to the deficiencies of modern medicine regarding dying people and to focus solely on their needs. It has led to an improvement in the quality of life of dying people. However, dying is still poorly understood and without a proper foundation of knowledge, deficiencies in end-of-life care cannot be addressed.
Stress is the Answer
Unfortunately, the dying period is difficult to study (except under extraordinary circumstances). Dying people often have trouble communicating in the advanced stages of disease, and their loved ones or caregivers are notoriously inaccurate in assessing their well-being. Most importantly, dying is a time of distress for dying people and families, and intrusive research should be kept to a minimum.
For all of these reasons, the study of cortisol in the hair of the dead offers a promising new window into the experience of dying. Cortisol is a stress hormone that can be found in human hair. Stress levels are closely related to an individual’s distress, suffering, and quality of life, making them a great tool for studying the end of life. Scalp hair grows about one centimeter per month. Thus, cortisol in the hair of dead individuals reflects stress in the months leading up to death. Cortisol levels in hair can be compared between individuals who died recently with those who died in the past to figure out if advances in medical treatment make dying less stressful.
Learning from the Past
Collections of hair samples from throughout history are not common. In my research, I eventually found one collection through the Smithsonian Institution in Washington, DC. It consisted of individuals who died between 1923 and 1960 near St. Louis, Missouri. I selected forty individuals for study; those samples were compared to hair samples collected by University of Central Florida researchers from forty individuals who died between 2014 and 2016 near Orlando, Florida, and donated their bodies for scientific research. The hair samples from the women at the beginning of the story are part of these collections.
When the average hair cortisol in individuals who died between 1923–1960 was compared to that of the individuals dying between 2014–2016, the results were clear. Statistical tests revealed that hair cortisol concentrations in the group with access to more advanced medical treatments were no different from the one without. These results indicate that stress levels are high in the months leading up to death, regardless of access to advanced medical care. The end of life was just as stressful in 2016 as it was nearly one hundred years earlier.
The Future of Dying
This story began with two women. One died in 1929, without access to the improvements in medicine we see today; the other died in 2015 with access to advanced medical care throughout her life. Given the rapid pace of medical advancement over the last eighty years, it may be difficult to comprehend that they experienced the same amount of stress at the end of life. Yet, considering modern medicine’s focus on survival and its unwillingness to accept death, and the challenges of studying the dying period, the outcome is not unexpected.
Palliative care specialists have long argued that caring for a dying person requires “whole person care” because death is not simply a medical event. “Whole person care” means focusing on a dying person’s emotional, social, spiritual, physical, and mental well-being, instead of continuing curative treatments that are no longer effective or are causing harm. The high stress at the end of life despite advancements in medicine suggests that more than medical treatment is necessary to improve stress at the end of life.
During the COVID-19 pandemic, death tolls rose more than at any time in recent memory. Modern medicine was focused on survival while people were dying without the usual supports, such as care from family, social workers, therapists, or even human contact. If dying is a highly stressful event for an eighty-seven-year-old woman dying after a long and well-managed illness, it is difficult to imagine what COVID-19 patients went through.
Despite the grim outcome for many dying people, the COVID-19 pandemic has also shown that medical researchers and practitioners today are capable of miraculous achievements at unprecedented time scales. If the same energy and resources are turned to the dying period, medical professionals could develop better methods for evaluating quality of life at the end of life, better approaches to symptom management, and better policies for ensuring everyone has access to whole person and timely palliative care. With greater attention, the quality of life for dying people could be improved leading to less fear of the dying period for all. For that to happen, modern medicine must reevaluate its understanding of death. Instead of viewing death as a failure, medical practitioners must view dying as another stage of life that requires specialized care.
- V. J. Bass and J. Eberle, Robert Koch Hospital National Register of Historic Places Inventory – Nomination Form, United States Department of the Interior, National Parks Service, Form 10-900, 1984. ↑
- B. Bastian, Vera B. Tejada, E. Arias, et al. “Mortality Trends in the United States, 1900–2018.” (National Center for Health Statistics, 2020). ↑
- Sarah Franklin and Margaret Lock, “Animation and Cessation: The Remaking of Life and Death,” in Remaking Life and Death: Toward an Anthropology of the Biosciences, eds. Sarah Franklin and Margaret Lock (School of American Research Press), 3−22. ↑
- Ronald M. Davis, Myron Genel, John P. Howe III, Mitchell S. Karlan, William R. Kennedy, Patricia A. Numann, Joseph A. Riggs, W. Douglas Skelton, Priscilla J. Slanetz, Monique A. Spillman, Michael A. Williams, Donald C. Young, James R. Allen, Robert C. Rinaldi, Joanne G. Schwartzberg, Joanne Lynn, and Joan Teno, “Good Care of the Dying Patient,” JAMA 275, no. 6 (1996): 474–78. ↑
- Virginia P. Tilden, “Ethics Perspectives on End-of-Life Care,” Nursing Outlook 47, no. 4 (1999): 162–67. ↑
- David Clark, “From Margins to Centre: A Review of the History of Palliative Care in Cancer,” The Lancet Oncology 8, no. 5 (2007): 430–38. ↑
- Raul Vicente, Michael Rizzuto, Can Sarica, Kazuaki Yamamoto, Mohammed Sadr, Tarun Khajuria, Mostafa Fatehi, Farzad Moien-Afshari, Charles S. Haw, Rodolfo R. Llinas, Andres M. Lozano, Joseph S. Neimat, and Ajmal Zemmar, “Enhanced Interplay of Neuronal Coherence and Coupling in the Dying Human Brain,” Frontiers in Aging Neuroscience 14, no. 813531 (2022): 1–11. ↑
- Floyd Jackson Fowler Jr., Kristen M. Coppola, and Joan M. Teno, “Methodological Challenges for Measuring Quality of Care at the End of Life,” Journal of Pain and Symptom Management 17, no. 2 (1999): 114–19. ↑
- Amy P. Abernethy, Warren H. Capell, Noreen M. Aziz, Christine Ritchie, Maryjo Prince-Paul, Rachael E. Bennett, and Jean S. Kutner, “Ethical conduct of palliative care research: enhancing communication between investigators and institutional review boards,” Journal of pain and symptom management 48, no. 6 (2014): 1211-1221. ↑
- Kaitlin East, “Stress, Dying, and Disease: Hair Cortisol Concentration in the Study of Stress at the End of Life in the Past and Present,” (PhD diss., McMaster University, 2021). ↑
- Balfour Mount, “Whole Person Care: Beyond Psychosocial and Physical Needs,” American Journal of Hospice and Palliative Medicine 10, no. 1 (1993): 28–37. ↑