Rose Parisi
Albany, New York, United States

 

Artwork by Kristen Merola.

In recent years, the way in which Americans cope with death and dying has evolved considerably and become institutionalized and over-medicalized. Whereas over time people have died in their homes, untethered to wires and machinery, modern medicine has turned people into patients and handed them over to medical professionals who often regard individuals as inseparable from their diseases.¹ Yet in the midst of this institutionalization and over-medicalization of death and dying, we may clearly benefit from a return to more natural coping and caring methods.

These challenges associated with end-of-life care are increasingly pressing because of demographic shifts in the US and other industrialized countries, known as “silver tsunamis.” As medical technology and healthcare advance, people are living longer than ever. With old age often comes chronic illness and an increased demand for both geriatric health professionals and caregivers to provide and manage care. In 2030, a social crisis is expected. As baby boomers age, people over sixty-five are projected to outnumber children for the first time in history.² The “2030 problem” includes unmet structural, cultural, economic, and medical demands that will accompany this demographic shift.

The increasing proportion of elderly people in our population, along with advances in medicine that have prolonged life, also calls into question the ways in which we deal with the final months of life. People are deceived by the illusion that healthcare can keep people alive indefinitely. Modern medicine can certainly prolong lives; however, it struggles to simultaneously promote good quality of life during prolonged days.³

Nearly three in eight elderly people in New York die in a hospital. This is largely because of insufficient familial and community support that could have retained a person in comfort at home.⁴ Studies have shown that about 80% of Americans would prefer to die at home; however, in reality, 60% of Americans die in acute care hospitals, 20% in nursing homes, and only 20% at home.⁵ Yet what most people fear the most is the isolation of death itself.⁶ When someone is rushed from their home to the emergency department, it becomes more lonely, sad, and traumatic for the person who is dying.⁷ As a result, final days are often dedicated to futile attempts to prolong life without realizing that there are ways to live meaningfully while dying.⁸

Not only does the medicalization of death have an impact on emotions, but it also impacts healthcare spending. One quarter of all Medicare spending is used to provide care for people during the last twelve months of life,⁹ yet it often fails to improve the quality of life for the dying person.¹⁰ The balance between medically treating a terminally ill patient without prolonging a low-quality life is still undefined. To reduce costs while simultaneously ameliorating the quality of end-of-life care for the dying, hospice care programs need to become an accessible standard of care.¹¹

Hospice is revolutionary; it allows dying people to remain in the comfort of their own homes and focuses on the individual as a whole person within a larger social network, rather than as a patient. The hospice approach improves the quality of life and retains individual autonomy.¹²

However, hospice and palliative care are politically undervalued; there is a lack of public awareness of their existence, and, as a result, people are not demanding these services from policymakers or clinicians. Patients, families, and healthcare providers would benefit from education about the mission and benefits of hospice care. Hospice is the solution to high cost, over-medicalized, and low quality end-of-life care.¹² Hospice patients suffer less, retain greater autonomy, and maintain relationships and interactions with others for a longer period of time compared to people who die in the hospital.¹³

There are significant barriers to accessing hospice care in the US. Currently, there is limited availability of hospice services to people with a low education level and low socioeconomic status.^14,15 Furthermore, people from a low socioeconomic status, if able to access hospice, often cannot remain in their own homes if not approved by hospice as having a safe or supportive environment. As a result, such people become marginalized and are less likely to enroll in hospice and die at home.^16,17 Alternatively, people could live in a local hospice facility. However, local hospice beds are in high demand and are often unavailable.¹⁶ The result of such barriers is that people from a low socioeconomic status or who reside in rural areas are often unable to receive hospice care.

In the age of the medicalization of death, it is crucial to evaluate why the experience of dying in the US is challenging, what contributes to bad deaths, and what fosters good deaths.¹⁸ The way in which people with chronic conditions or terminal illnesses experience life expands well beyond the realm of biomedicine—it encompasses personal and social relationships and interactions with all aspects of life.¹⁹

The solution is prevention: preventing the mentality that death is an emergency. Interdisciplinary medical teams must be trained to help individuals achieve personal preferences, and people must be educated about the dying experience, how autonomy and meaning can be retained, and how dying can be made a more humanistic, social, and peaceful experience for both the person and their family.

 

References

1. Kaufman S. And a Time to Die: How American Hospitals Shape the End of Life. Scribner; 2005.
2. United States Census Bureau. Older People Projected to Outnumber Children for First Time in U.S. History. 2019. https://census.gov/newsroom/press-releases/2018/cb18-41-population-projections.html.
3. Vitez M. Final Choices: Seeking the Good Death. Camino Books; 1997.
4. Jha AK. JAMA Forum: End-of-Life Care, Not End-of-Life Spending. 2018.
5. Morhaim D. Preparing for a Better End: Expert Lessons on Death and Dying for You and Your Loved Ones. Johns Hopkins University Press; 2020.
6. Hallenbeck JL. Palliative Care Perspectives. Oxford University Press; 2003.
7. Kübler-Ross E. On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families. Macmillan; 1969.
8. Stillion J, Attig T. Death, Dying, and Bereavement: Contemporary Perspectives, Institutions, and Practices. Springer Publishing Company; 2014.
9. Riley GF, Lubitz JD. Long-term trends in Medicare payments in the last year of life. Health Serv Res. 2010;45(2):565-76.
10. Ryan AM, Rodgers PE. Linking Quality and Spending to Measure Value for People with Serious Illness. J Palliat Med. 2018;21(S2):S74-S80.
11. Duncan I, Ahmed T, Dove H, Maxwell TL. Medicare Cost at End of Life. Am J Hosp Palliat Care. 2019;36(8):705-10.
12. Ellison KP, Weingast M, editors. Awake at the Bedside: Contemplative Teachings on Palliative and End-of-Life Care. Wisdom Publications; 2016.
13. Gawande A. Letting Go. New Yorker; 2010.
14. Carlson MD, Bradley EH, Du Q, Morrison RS. Geographic access to hospice in the United States. J Palliat Med. 2010;13(11):1331-8.
15. Lewis JM, DiGiacomo M, Currow DC, Davidson PM. Dying in the Margins: Understanding Palliative Care and Socioeconomic Deprivation in the Developed World. Journal of Pain and Symptom Management. 2011;42(1):105-18.
16. Borgstrom E, Walter T. Choice and compassion at the end of life: A critical analysis of recent English policy discourse. Soc Sci Med. 2015;136-137:99-105.
17. Barclay JS, Kuchibhatla M, Tulsky JA, Johnson KS. Association of Hospice Patients’ Income and Care Level With Place of Death. JAMA Internal Medicine 2013;173(6): 450-456. https://doi.org/10.1001/jamainternmed.2013.2773.
18. Clavarino AM. Using quality of life endpoints in palliative care: The cultural implications. Anthropology & Medicine 1999;6(3):437-55.
19. Sasser C, Sanders S, Mazurkiewicz A. The Healing Story: Therapeutic Applications of Narrative Medicine in Primary Palliative Care. Journal of Pain and Symptom Management 2010;39(2): 355.

 

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ROSE PARISI, BS, MBA, is a third year medical student at Albany Medical College in Albany, NY. Rose earned her Bachelor of Science in Biology and Anthropology from Union College and her Master in Business Administration with a concentration in Healthcare Management from Clarkson University. While at Union College, Rose conducted medical anthropology, hospice, and palliative care research. Rose has authored multiple manuscripts and abstracts in high impact journals on oncology, dermatology, and oncodermatology.

 

Submitted for the 2022–23 Medical Student Essay Contest

Winter 2023  |  Sections  |  End of Life