Healthcare for the Dying American: A Brief History

Collin Kramer is a fourth year biological chemistry major and pre-med student at Grinnell College. Outside of academics, he serves as a co-captain of the Men’s Swimming and Diving team and is a member of the Global Medical Brigades executive board.

During a conversation with my grandmother this past December, the topic of final wishes surfaced. My grandfather had passed away two years earlier after a long struggle with diabetes, heart disease, and persistent dementia. This experience was meaningful for our family, revealing many difficulties surrounding end-of-life care for a loved one with mental illness and raised several important questions. Would he want to continue taking a myriad of medications if he becomes confused? At what point should agency of care be given to a legal representative? Would he want to be resuscitated if machines are the only force keeping him alive?

All of these questions can be difficult to answer if a loved one is already displaying signs of cognitive or serious physical decline. With all of this in mind, my grandmother keenly proceeded to set her final wishes in order.

End-of-life care has recently generated great discussion in the American medical community. Atul Gawande’s Being Mortal even reached the number one spot on the New York Times best-selling science books ranking of 2010. Why is this just now becoming an issue of debate? Many, such as Gawande, indicate that today’s medical community pushes terminally-ill patients too far, utilizing last ditch treatments which can have painful and even harmful side effects but yield little benefit. Moreover, as scholar Samuel Lawrence points out, the oldest “baby boomers” are rapidly approaching their 70th birthdays and the U.S. will soon witness a “huge wave of death” which “will be emotionally devastating” [1].

End-of-life care in America today finds itself in a complicated mess. Patients often present multiple chronic conditions, greatly increasing the complexity of their treatment. Worsening matters, physicians struggle to simultaneously treat the disease while managing the pain and side effects felt by patients. Unfortunately for patients, preventing death at all costs often seems to be the primary goal of the medical establishment. This imperative to avoid death is reflected in healthcare spending statistics, with 25% of all Medicare spending being allocated for the 5% of patients who will die within a year [2]. Clearly, many issues surrounding end-of-life care face the medical establishment today. To understand our current state, I suggest that we examine the history of end-of -life care in America, one that has proven to be surprisingly American.

We needn’t look back far in our history to unearth radically different views towards death. Prior to the medical advances of the twentieth century, mortality rates were much higher at younger ages. Sporadic outbreaks of infectious diseases such as malaria would ravage entire communities. Diphtheria could claim the life of a child at any moment. Presidents John Quincy Adams, Millard Fillmore, and Andrew Johnson all died of strokes within 48 hours of first symptoms [3].

While the idea of dying so rapidly and unexpectedly might frighten us today, some have argued that our ancestors were much more in touch with their mortality as a result. French historian Philippe Aries coined this idea “tame death”. Tame death was marked by death in the home, widespread acceptance of mortality and public mourning for the deceased [4]. In this era, doctors realized the limitations of their meager treatments and often had little choice but to allow death to take its course. Popular culture, Emily Abel argues, “Helped patients, families, and doctors accept the inevitability of death,” as it “continually issued reminders of life’s fragility” [5]. These reminders took the form of novels, religious pamphlets and even Sunday school literature and stressed the importance of having a close relationship with God prior to death which could occur at any time.

The introduction of antisepsis and anesthesia in the 1860s radically changed the way Americans died. Soon after their introduction, these two discoveries vastly improved the power of medicine to fight contagions and perform surgery. American physicians and patients alike began to increase their expectations of what could be treated and cured. With the subsequent discoveries of vaccines and antibiotics early in the 20th century, infectious diseases seemed to be all but eradicated. Some ambitious contemporaries began to advocate the idea that medicine might be capable of conquering death itself [6]. Indeed, the impact of these discoveries was unprecedented, with American life expectancies nearly doubling in a century’s time.

However, with a decline in infectious diseases, rates of chronic illnesses rose to take their place [7]. Between 1870 and 1920, deaths due to chronic illness rose from 7% to 50%, reaching over 60% by 1940 [8]. With this shift, the dying process became longer and drawn-out. Simultaneously, deaths began to move from the home to the hospital. Compared to dying in a home surrounded by loved ones, dying in a sterile hospital alone and hooked up to various machines must have been an extremely dehumanizing experience.

During this era of medical breakthroughs, American physicians began to utilize more treatments to stave off death. Instead of admitting defeat as their nineteenth-century counterparts had just decades before, this new generation of American physicians sought to extend life using their new arsenal of treatments. Whereas terminal cancer patients might have died gradual deaths at home before, they increasingly became in-patients at hospitals, receiving harsh oncology treatments. This trend of dying in hospitals continued for several decades; with a continuous stream of medical breakthroughs, Americans continued to live longer, live with more chronic diseases and die in hospitals whilst undergoing some kind of treatment. By the 1950s, over 61% of American deaths took place in hospitals [9].

Some scholars have convincingly argued that many of these harsh practices used to preserve life are implemented as a result of unique American values. Scholar Lawrence Samuel argues that “death and dying run counter to virtually all of the nation’s defining values – youth, beauty, progress, achievement, winning optimism, independence, and persistence – that accounts for our ‘dying badly’”[10]. Grinnell College Professor Karla Erickson makes a similar point, arguing that because death cannot be rationalized, it challenges our culture. Moreover, she argues that due to capitalistic forces and new technologies, we neglect the value of our elders’ wisdom and therefore neglect to care for them properly [11].

As with many other aspects of American society, the 1960s marked a time of social upheaval surrounding end-of-life care. Several movements arose, decrying the dehumanizing treatment of the terminally-ill and dying in hospitals. Most prominent among these movements was Hospice which sought to empower the patient during the dying process.

Three women featured prominently in the American Hospice movement. Cicely Saunders, founder of the British hospice movement, began visiting American hospitals in 1963. Her lectures called for professionals to use their arsenal of technologies and treatments to alleviate suffering rather than cause it [12]. She soon inspired Florence Wald, an American Nurse who was Dean of the Yale School of Nursing. Wald would go on to found the first hospice clinic in the U.S. in 1968. However, it was the publishing of On Death and Dying by Elizabeth Kübler-Ross in 1969 describing her experience with the first hospice movement which greatly increased its popularity [13].

The country’s first hospice clinic promoted a philosophy anchored by three tenants. The first was known as “Total Community.” Staff, patients and their families would all be heavily involved in the care provided. The second tenant was maximizing socialization – interaction among the community was encouraged while still maintaining individual privacy. Finally, they believed in an interdisciplinary approach in which physicians, nurses, chaplains and social workers worked together seamlessly to provide high quality care. Soon, many local initiatives were following Wald’s lead. By 1980 there were over two hundred fifty hospice programs nationwide [14].

As these programs proliferated, the core values of Wald’s original hospice movement faced a hostile political environment. President Reagan’s policies of deregulation and privatization opposed hospice integration into Medicare. In order to gain bipartisan support, several concessions were made by the pro-hospice camp, the most important of which increased the authority of physicians during care. With several concessions, the bill was passed into law in 1982. Nearly fifteen years after the first clinic opened, hospice had finally received approval and support from the federal government [15].

After some initial bumps in the road, Medicare began to integrate hospice more and more. By 2007, Medicare was spending over $10 billion per year on hospice, with this figure expected to double between 2011 and 2020 [16]. Finally, retired Americans were guaranteed access to compassionate end-of-life care.

Or so it would seem.

Returning to the present period, it’s apparent that integration of hospice into the medical establishment has not significantly improved the way that Americans die. Only about one in three Americans enters hospice care before their death. One explanation for this shortcoming is that many physicians discourage their patients from entering hospice care. As one oncologist was quoted telling his terminally-ill patient upon her mentioning hospice: “Hospice and radiation therapy do not go together,” and they only give “pain meds and do nothing and let the tumor grow…but then you’ll have to take more pain meds and more pain meds” [17]. Perhaps conceding greater control to doctors over hospice treatment was a mistake.

Unfortunately, this attitude towards hospice is not uncommon among doctors and often leads to poor quality of life at the time of death. This point is exemplified by a 2010 study which compared patients with terminal metastatic cancer who chose standard oncology practices versus those who opted for palliative care which is recommended by hospice. The authors found that those who received standard oncology treatments lived a median 8.9 months while those receiving palliative care lived a median of 11.6 months [18]. Sadly, American physicians pressure patients to receive treatments that are costly, painful and, in some cases, shorten their lives.

With the “impending wave of death” looming, what can you do to ensure that your loved ones receive the best end-of-life care? According to Atul Gawande, the key is having hard conversations regarding end-of-life wishes before it is too late [19]. As Americans, we take our liberties to heart. Choosing how we want to live our final moments is perhaps one of the most underrated liberties that we can exercise. Have the hard conversation with your loved ones before it’s too late.

1. Lawrence R. Samuel, Death, American Style: A Cultural History of Dying in America, (Lanham: Rowan & Littlefield Publishers, 2013), xxi.

2. Atul Gawande, Being Moral: Medicine and What Matters at the End (London: Profile Books LTD, 2014), 153.

3. Ibid., 156.

4. Daniel Callahan, “Death, Mourning, and Medical Progress,” Perspectives in Biology and Medicine 52, no. 1 (2009): 104, http://www.ncbi.nlm.nih.gov/pubmed/19168948.

5. Emily K. Abel, The Inevitable Hour: A History of Caring for Dying Patients in America, (Baltimore: Johns Hopkins University Press, 2013), 2.

6. Ibid., 3.

7. Samuel, Death, American Style, xvi.

8. Abel, The Inevitable Hour, 5.

9. Joy Buck, “Reweaving a Tapestry of Care: Religion, Nursing, and the Meaning of Hospice, 1945-1978,” Nursing History Review 15 (2007): 3,
https://www.questia.com/library/journal/1P3-1394543601/reweaving-a-tapestry-of-care-religion-nursing-and.

10. Samuel, Death, American Style, xvii.

11. Karla Erickson, How We Die Now: Intimacy and the Work of Dying, (Philadelphia: Temple University Press, 2013), 25-26.

12. Buck, “Reweaving a Tapestry of Care: Religion, Nursing, and the Meaning of Hospice, 1945-1978,” 2.

13. Jacalyn Duffin, “Palliative Care: The Oldest Profession?” Canadian Bulletin of Medical History 31, no. 2 (2014): 211, http://www.cbmh.ca/index.php/cbmh/article/view/1648/1640.

14. Buck, “Reweaving a Tapestry of Care,” 4.

15. Ibid., 8.

16. Ibid.

17. Jacqueline H. Wolf and Kevin S. Wolf, “The Lake Wobegon Effect: Are All Cancer Patients above Average?” The Milbank Quarterly 91, no. 4 (2013): 704.

18. J.S. Temel, J. Greer, and A. Muzikansky, “Early palliative care for patients with metastatic non-small-cell lung cancer,” New England Journal of Medicine 19, (2010), 733.