Tracy Lang

Providing Quality End-of-Life Care for an Aging Society

March 24, 2021

Introduction

            Advances in public health and medical technology have allowed us to combat disease and extend our lifespan beyond what was previously imagined. However, here in the United States, we have become prone to many age-associated chronic illnesses, including cardiovascular disease, neurodegenerative disease, and cancer, for which curative treatments are limited. Not only do these chronic conditions severely impact wellbeing, but pain, which is a common symptom of many of these conditions, is also often experienced at the end of life. Relieving suffering in patients with life-threatening illnesses becomes critical in order to ensure optimal quality of life, as well as to prevent unnecessary healthcare expenditures. Unfortunately, there are many systemic and cultural barriers to proper end-of-life care for those who most need it. Many dying patients have unmet needs for pain and symptom management, communication with physicians and loved ones, as well as emotional support. Thus, I will explore these barriers to quality end-of-life care and the ways in which we can relieve psychological and physical stress in individuals to allow for a more comfortable dying process.

1. A Brief History of the Public Health System

            Without the development of our public health system, our average life expectancy would still be less than half of what it is today. Before the 18th century, epidemics were thought to be caused by poor morality and spirituality and thus could only be eradicated through prayer and piety.¹ Disease was seen as a natural effect of the individual human condition, rather than as controllable through public efforts. It wasn’t until the Industrial Revolution in the 19th century that overall health and wellbeing at the community level started to become a social responsibility. Campaigns led by John Snow and Edwin Chadwick raised awareness over how filthy environmental conditions were contributing to the spread of disease.¹ At first, their campaigns went unheeded by wealthy authorities, who could afford to ignore the plight of the working class. However, since isolation of the sick could not easily be achieved in an urban setting, authorities were no longer able to ignore the problems that plagued the working class and began promoting sanitation and engineering public infrastructure to remove sewage.¹ From this point onwards, many people began to research how disease was spread. In 1861, French chemist Louis Pasteur discovered that bacteria caused infection and disease, which formed the foundation of the germ theory.² The germ theory was fundamental to the subsequent development of vaccines for many illnesses, such as anthrax and rabies, as well as the development of the pasteurization process, which prevents bacterial contamination in food and beverages through heating.² Both vaccines and pasteurization began to curb the spread of infectious diseases among the population. The increasing scientific discoveries on the causes of disease also contributed to the development of antibiotics, now widely used in modern medicine. Antibiotics were discovered by the German physician Paul Ehrlich when he found that there were specific chemical dyes for bacterial cells.³ He hypothesized that different bacterial cells could be selectively targeted with different substances, and was proven to be correct with his 1909 discovery of arsphenamine, an effective treatment for syphilis, and later, Alexander Fleming’s 1928 discovery of penicillin, which prevents Staphylococcus bacterial growth.^3,4 Lastly, with increasing knowledge on disease spread and treatment, government agencies and regulations were put into place to ensure the safety and wellbeing of communities because the rise of industrialization came with an increase in fraudulent practices in the manufacturing and labeling of food and drugs. Upton Sinclair’s The Jungle exposed the unsanitary conditions in the Chicago meatpacking industry, and Harvard Washington Wiley campaigned against manufacturers marketing placebos as effective medicine.⁵ These events catalyzed public outcry for tighter regulations over food and drug safety, leading to the enactment of the Pure Food and Drug Act in 1906 and the formation of the Food and Drug Administration.⁶ The Food and Drug Administration plays a key role in protecting and advancing public health through regulatory oversight. Thus, without these scientific and medical discoveries, our public health system would not be where it is today, and we would not have been able to combat many past diseases that would have taken our lives today.

1. A Closer Look into America’s Aging Population

            Besides the increase in lifespan from public health advances, distinguishing characteristics of the American population create unique challenges for our healthcare system. After World War II, America saw high fertility rates, resulting in rapid population growth.⁷ This led to the “Baby Boom” Generation, which contributed to a substantial increase in older adults aged 65 and older. In 2020, there were an estimated 55 million older adults aged 65 and older, and this number is only predicted to increase to 70 million by 2030.⁸ Although this demographic is increasing in population, Boomers are having fewer children than their parents, resulting in a declining fertility rate of less than two at 1.73.^7,9 This has led to a decrease in the younger proportion of our population and an increasingly older proportion of our population. Unfortunately, an unintended consequence of our aging society is that we will see an increase in the prevalence of chronic conditions that require complex care. However, our physicians are not well-prepared to provide chronic care, since our healthcare system is generally focused on treating acute conditions.⁸ We will thus have to make the necessary changes in our healthcare system to address and accommodate an aging population with chronic conditions if we are to help maintain quality of life near the end of life.

III. The Burdens on Healthcare

            The increase in chronic, non-communicable diseases among the older population has not only impacted their well-being, but also significantly impacted our healthcare budget and nation’s welfare. Chronic diseases, including cardiovascular disease, diabetes, and cancer, are the leading causes of death and disability among older adults in the U.S. and worldwide.¹⁰ Thus, it is expected that we will face increased mortality and morbidity as the prevalence of chronic illnesses increases among a rapidly increasing aging population. Furthermore, many older adults have been found to have more than one chronic condition — about 80% of older adults have at least one chronic condition, and nearly 70% of Medicare beneficiaries have two or more conditions.¹⁰ Thus, to accommodate those with additional chronic conditions, we will see an even more severe increase in healthcare spending to provide necessary long-term care and support. Currently, the unmet needs of the older population have warranted more medical attention than any other demographic — in 2015, the financial burdens of the older population accounted for ⅔ of healthcare spending by the government, and in 2018, end-of-life care took up an overall 10% of our healthcare spending.^11,12 With healthcare spending and resources increasingly being utilized for older adults reaching the end of life, perhaps the issue of focus is not the excessive spending itself, but rather the type of care older adults receive near death. In this regard, it is crucial to examine the barriers preventing dying patients from receiving quality patient-centered care.

1. What Is Quality End-of-Life Care?

            Before we are able to explore the obstacles older adults face in receiving quality end-of-life care, it is important to define what quality care means to those most affected, the patient. Patients with terminal conditions or receiving long-term care identified five domains important in defining quality of care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones.¹³ These five categories make up what patients perceive to be quality care. Thus, to understand and fulfill the unmet needs of this patient population, we will look at existing barriers to end-of-life care through these five domains.

            To address patient concerns over pain and symptom management, hospice and palliative care are desirable end-of-life options. Patients with a terminal condition limiting them to six months left to live are provided with the option of hospice care, which provides comprehensive comfort care for the patient and family without attempting to cure the person’s illness.¹⁴ Palliative care also emphasizes comfort care to manage the pain and symptoms that come with a terminal diagnosis, but does not give up potential curative treatment.¹⁴ Both hospice and palliative care are valuable options for those nearing the end of life, but they are often underutilized due to misconceptions. In a cross-sectional study conducted in New York state, 83% and 27% of the 800 participants were able to provide a definition of hospice care and palliative care, respectively, and of these participants, 37.3% had a misperception about hospice care and 53.2% had a misperception about palliative care.¹⁵ Furthermore, 60% of those defining hospice care associated it generally with end-of-life care and only 26.4% of those defining palliative care mentioned it providing symptom management. These data show that while many people are aware of these end-of-life care options, they may overwhelmingly negatively associate them with dying instead of the potential benefits from pain and symptom management. Despite popular belief, when compared to those not enrolled in hospice, hospice patients reported that they received more adequate pain medicine and help with dyspnea, their end-of-life wishes were followed, and they were provided with excellent quality end-of-life care.¹⁶ Thus, encouraging hospice enrollment for those with terminal conditions may help provide a better experience for patients according to their needs. Similarly, the Kaiser Permanente Palliative Care Project, which provided palliative care patients with symptom control and pain relief, as well as emotional and spiritual support, had increased satisfaction with services at 60 days after enrollment and significantly fewer Emergency Department visits, hospital days, and physician visits.¹⁷ Not only is palliative care effective at providing quality end-of-life care, but services commonly associated with excessive healthcare spending are decreased. Thus, both hospice and palliative care are attractive and feasible solutions for those nearing the end of life and should be brought to more dying patients’ attention.

            Older adults undergoing their end-of-life journey often voice a desire to avoid the prolongation of the dying process. From a 2013 survey conducted by the Pew Research Center, 56% of U.S. adults would personally choose to not undergo medical treatments that slow the aging process.¹⁸ This suggests that while advances in medical technology allow us to extend our lifespan, many patients near the end of life do not necessarily believe that additional treatments will increase or maintain their current quality of life. Furthermore, many dying patients mention wanting to die naturally in peace, so the desire to not undergo anti-aging medical treatments by the majority of U.S. adults is likely to be robust in the situation of imminent death.¹³ This can be explained by many patients’ distrust of the healthcare system. In fact, 41% of the same U.S. cohort believe that medical treatments often create as many problems as they solve.¹⁸ Thus, it could be that many patients hold a general distrust of medical services and may not find the risks to be worth losing the current quality of life. This is often true especially at the end of life, as the expensive and high-intensity treatments that dying patients typically receive do not appear to decrease mortality when compared to those receiving lower intensity care.²⁰ Thus, despite the increased awareness of our excessive healthcare spending, the U.S. still has much more progress to make to curb the system’s excessive use of unnecessary life-saving treatments. In a 2010 retrospective cohort study, 40.3% of U.S. decedents aged 65 years or greater had an ICU admission compared with less than 18% in other nations, and the U.S. had one of the highest mean per capita hospital expenditures ($18500) in the last 180 days of life versus other European countries (i.e., England: $9342).¹⁹ Thus, it is likely that there is an overutilization of expensive, resource-intensive hospital services that only serve to prolong the dying process. Based on these results, there should be increased in-depth communication and planning between terminally ill patients and those involved in the decision-making process to focus more on achieving the care the patient wants, rather than adding to their burdens. 

Advance planning is not only beneficial because it can help prepare older adults for unpredictable events in the future, but it can also give them a sense of control over their disease journey and relieve decision-making stress placed on their loved ones. Advance care planning serves to facilitate communication between individuals, families, and healthcare providers to discuss and plan future health care decisions, especially in the event the individual loses decision-making capacity.²¹ Unfortunately, many older adults are reluctant to hold discussions with their loved ones because they do not want to burden them. In a meta-analysis, self-perceived burden at the end of life is reported as a significant problem faced by an average 42% of terminally ill patients.²¹ Many patients are worried that sharing feelings of distress with their loved ones will create further burden or lead to a loss of respect. While older adults may be worried about their relationships with loved ones, self-perceived burden at the end of life not only prevents meaningful conversation, but also affects patient clinical decisions and acceptance of treatment, the choice of place of care, and willingness to fill out advance directives, a legal document that describes the treatments people wish to have when they near death.²¹ However, if older adults wish not to further exacerbate the stress placed on their caregivers, it is crucial that they engage in conversation to clearly define what type of care they want at the end of life. In fact, a randomized controlled trial found that inpatients randomized to usual care and facilitated advance care planning who died by six months were more likely to not only have their end-of-life wishes followed, but also their family members had significantly less stress, anxiety and depression.²² Thus, having discussions on end-of-life wishes does not appear to burden family members, but rather, has potential for strengthening relationships with loved ones. When advance care planning is incorporated into a patient’s usual care, the patient is able to alleviate some of the decision-making burden on caregivers by assuming autonomy over their own situation, and family members are able to properly grieve and move on without regret.

While advance care planning provides mutually beneficial outcomes for both the patient and their family, physicians are often unprepared or reluctant to discuss end-of-life options. A 2003 national probability sample from 62 accredited U.S. medical schools found that more than 90% of respondents believed physicians had a responsibility to help dying patients, but 39% of students reported feeling unprepared to address patients’ fears surrounding death or to manage their own feelings.²³ Physicians recognize a need for meaningful conversation surrounding impending death, but feelings of unpreparedness hinder their ability to sensitively attend to their patients’ needs. Besides not receiving formal training on conducting end of life conversations, physicians are also concerned about the cultural differences that may impact an individual’s perception of death. A 2010-2012 mixed-methods study found that 99.99% of multi-specialty doctors caring for diverse, seriously ill patients reported barriers to conducting end-of-life conversations with patients, especially if the patient was of a different ethnicity.²⁴ The most cited barriers included language and medical interpretation barriers, the patient’s spiritual beliefs, and cultural differences impacting the patient’s decision-making.²⁴ Thus, while understanding how to tailor serious conversations to cultural and ethnic differences is crucial to becoming a successful physician, there is much to be done to increase physician cultural competency and readiness in the specific sphere of end-of-life care. Physicians must understand the personal needs of their patient if they are to provide the appropriate care.

1. Current Strategies to Provide Quality End-of-Life Care

With research raising awareness on what matters most to patients nearing the end of life, exciting initiatives exist to increase meaningful conversation between patients, their loved ones, and physicians. Since 2011, 4,096 death cafes in 42 countries have been held as part of the death positive movement, whose goal is to spark dialogue about death and dying and to help those nearing death feel comfortable with carrying on the conversation with their own families.²⁵ These death cafes give people from different cultural and ethnic backgrounds the opportunity to share and discuss their own beliefs and experiences, helping to create empathic understanding. There are also more formal initiatives to increase communication between patients and their loved ones, as well as between patients and their physicians. The Stanford Letter Project, which began in 2015 under Dr. Vyjeyanthi Periyakoil from Stanford University School of Medicine, includes three letter templates that are designed to help people start conversations around the future — the What Matters Most template allows space to reflect personally on what matters most to them and what treatments they would want, the Letter Project Advance Directive describes preferences for end-of-life medical care through a personal letter format for healthcare providers, and the Friends and Family Letter allows patients to reflect on their relationships and treasured moments and to organically express their gratitude, love, and forgiveness in final conversations with loved ones.²⁶ These tools are useful because the patient first spends time alone to reflect upon their own wishes and goals, and afterwards, uses a journal or letter as a familiar and comfortable medium for initiating serious conversations with loved ones and physicians. From the perspective of the physician, efforts are also being made to reform medical education. The National Internal Medicine Residency Curriculum Project uses peer-reviewed educational and instructional materials from the End-of-Life Physician Education Resource Center to train residency directors and chief residents in over 180 internal medicine programs on how to provide appropriate end-of-life care.²⁷ The goal of this project is to not only provide leaders at different institutions with end-of-life care training, but also the skills to train others in their program. Furthermore, seventeen subspecialty academic societies influencing residency education have adopted core principles for end-of-life care and are now developing professional curricula, clinical methods, and guidelines to meet the needs of dying patients.²⁷ The standardized education on end-of-life care and its tailored use to various subspecialties will be able to guide residents at the peak of their medical training before they begin to officially see patients. These initiatives have allowed us to break down barriers to quality end-of-life care and begin to change the American healthcare system to accommodate an aging society.

1. Conclusion

            The development of our public health system and advances in scientific research have allowed us to better understand the causes of disease and how to treat them. In combination with an aging Baby Boom Generation, the American population, while living longer, is increasingly facing the health and economic pressures associated with an increased prevalence of chronic conditions among older adults. These chronic conditions severely impact patient quality of life, which are further exacerbated by barriers to appropriate care. Many dying adults have unmet needs for receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. In this paper, we explored how end-of-life care options, such as hospice and palliative care, can be utilized to better manage pain and symptoms associated with chronic illnesses. However, it will be important to correct misperceptions surrounding these options and educate older adults on how these options can fulfill their needs. Furthermore, advance care planning will play a vital role in addressing the inappropriate prolongation of dying. To facilitate the planning process, it will be crucial for individuals to personally reflect on their goals and wishes for when they near death, and afterwards, engage in conversation with their loved ones and physicians. Talking about death and dying no doubt presents many challenges for patients, their loved ones, and physicians, but working to overcome these challenges is possible and will be necessary if we are to fulfill the patient’s right to have a good and fulfilling death.

References

¹ Institute of Medicine (US) Committee for the Study of the Future of Public Health. The Future of Public Health. Washington (DC): National Academies Press (US); 1988. 3, A History of the Public Health System. Available from: https://www.ncbi.nlm.nih.gov/books/NBK218224/           

² “Louis Pasteur.” Biography.com, A&E Networks Television, 12 June 2020, www.biography.com/scientist/louis-pasteur#:~:text=Louis%20Pasteur%20discovered%20that%20microbes,vaccinations%20for%20anthrax%20and%20rabies.

³ Aminov R. I. (2010). A brief history of the antibiotic era: lessons learned and challenges for the future. Frontiers in microbiology, 1, 134. https://doi.org/10.3389/fmicb.2010.00134

⁴ “The History of Antibiotics.” Microbiology Society, microbiologysociety.org/members-outreach-resources/outreach-resources/antibiotics-unearthed/antibiotics-and-antibiotic-resistance/the-history-of-antibiotics.html.

⁵ Schlosser, Eric. “The Man Who Pioneered Food Safety.” The New York Times, The New York Times, 16 Oct. 2018, www.nytimes.com/2018/10/16/books/review/poison-squad-deborah-blum.html.

⁶ “Gale Encyclopedia of U.S. Economic History.” Encyclopedia, 23 Mar. 2021, www.encyclopedia.com/history/united-states-and-canada/us-history/food-and-drug-act-1906.

⁷ US Census Bureau. “America’s Age Profile Told through Population Pyramids.” The United States Census Bureau, 17 Jan. 2017, www.census.gov/newsroom/blogs/random-samplings/2016/06/americas-age-profile-told-through-population-pyramids.html.

⁸ Boult, C., Green, A. F., Boult, L. B., Pacala, J. T., Snyder, C., & Leff, B. (2009). Successful models of comprehensive care for older adults with chronic conditions: evidence for the Institute of Medicine’s “retooling for an aging America” report. Journal of the American Geriatrics Society, 57(12), 2328–2337. https://doi.org/10.1111/j.1532-5415.2009.02571.x

⁹ “Fertility Rate, Total (Births per Woman) – United States.” The World Bank, 2018, data.worldbank.org/indicator/SP.DYN.TFRT.IN?locations=US.

¹⁰ The National Council on Aging, 1 Jan. 2021, www.ncoa.org/article/get-the-facts-on-healthy-aging.

¹¹ Nardi, Mariacristina De, et al. “Medical Spending of the Elderly.” National Bureau of Economic Research, June 2015, www-nber-org.stanford.idm.oclc.org/papers/w21270.

¹² Abbott, Ellen. “Ten Percent of All Healthcare Spending in the U.S. Goes toward End-of-Life Care.” WRVO Public Media, 30 Sept. 2019, www.wrvo.org/post/ten-percent-all-healthcare-spending-us-goes-toward-end-life-care#stream/0.

¹³ Singer, P. A., Martin, D. K., & Kelner, M. (1999). Quality end-of-life care: patients’ perspectives. JAMA, 281(2), 163–168. https://doi.org/10.1001/jama.281.2.163

¹⁴ “What Are Palliative Care and Hospice Care?” National Institute on Aging, U.S. Department of Health and Human Services, 21 May 2017, www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care.

¹⁵ Shalev, A., Phongtankuel, V., Kozlov, E., Shen, M. J., Adelman, R. D., & Reid, M. C. (2018). Awareness and Misperceptions of Hospice and Palliative Care: A Population-Based Survey Study. The American journal of hospice & palliative care, 35(3), 431–439. https://doi.org/10.1177/1049909117715215

¹⁶ Kumar, P., Wright, A. A., Hatfield, L. A., Temel, J. S., & Keating, N. L. (2017). Family Perspectives on Hospice Care Experiences of Patients with Cancer. Journal of clinical oncology: official journal of the American Society of Clinical Oncology, 35(4), 432–439. https://doi.org/10.1200/JCO.2016.68.9257

¹⁷ Wright, A. A., Keating, N. L., Ayanian, J. Z., Chrischilles, E. A., Kahn, K. L., Ritchie, C. S., Weeks, J. C., Earle, C. C., & Landrum, M. B. (2016). Family Perspectives on Aggressive Cancer Care Near the End of Life. JAMA, 315(3), 284–292. https://doi.org/10.1001/jama.2015.18604

¹⁸ “Living to 120 and Beyond: Americans’ Views on Aging, Medical Advances and Radical Life Extension.” Pew Research Center’s Religion & Public Life Project, 6 Aug. 2013, www.pewforum.org/2013/08/06/living-to-120-and-beyond-americans-views-on-aging-medical-advances-and-radical-life-extension/.

¹⁹ Bekelman, J. E., Halpern, S. D., Blankart, C. R., Bynum, J. P., Cohen, J., Fowler, R., Kaasa, S., Kwietniewski, L., Melberg, H. O., Onwuteaka-Philipsen, B., Oosterveld-Vlug, M., Pring, A., Schreyögg, J., Ulrich, C. M., Verne, J., Wunsch, H., Emanuel, E. J., & International Consortium for End-of-Life Research (ICELR) (2016). Comparison of Site of Death, Health Care Utilization, and Hospital Expenditures for Patients Dying with Cancer in 7 Developed Countries. JAMA, 315(3), 272–283. https://doi.org/10.1001/jama.2015.18603

²⁰ “Interactive Apps.” Dartmouth Atlas of Health Care, 17 Aug. 2020, www.dartmouthatlas.org/interactive-apps/?con=1338.

²¹ McPherson, C. J., Wilson, K. G., & Murray, M. A. (2007). Feeling like a burden to others: a systematic review focusing on the end of life. Palliative medicine, 21(2), 115–128. https://doi.org/10.1177/0269216307076345

²² Detering K M, Hancock A D, Reade M C, Silvester W. The impact of advance care planning on end-of-life care in elderly patients: randomised controlled trial BMJ 2010; 340:c1345 doi:10.1136/bmj.c1345

²³ Sullivan, A.M., Lakoma, M.D. & Block, S.D. The status of medical education in end-of-life care. J GEN INTERN MED 18, 685–695 (2003). https://doi-org.stanford.idm.oclc.org/10.1046/j.1525-1497.2003.21215.x

²⁴ Periyakoil, V. S., Neri, E., & Kraemer, H. (2015). No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients. PloS one, 10(4), e0122321. https://doi.org/10.1371/journal.pone.0122321

²⁵ Baldwin P. K. (2017). Death Cafés: Death Doulas and Family Communication. Behavioral sciences (Basel, Switzerland), 7(2), 26. https://doi.org/10.3390/bs7020026

²⁶ Stanford Letter Project, med.stanford.edu/letter.html.

²⁷ Aulino, F., & Foley, K. (2001). Professional education in end-of-life care: a US perspective. Journal of the Royal Society of Medicine, 94(9), 472–478. https://doi.org/10.1177/014107680109400916