Introduction
We all aspire to live as long and in good health. Nevertheless, inevitably, our bodies turn on us, and we start exhibiting obvious aging symptoms. Moreover, as we get older, we have to take a second look at who we are now, embrace it, and think seriously about how we want to live out the remainder of our lives. Nobody wants to consider their mortality. However, as we age, it becomes more likely that many of us will require high-quality end-of-life care that our existing healthcare system does not offer. It is a critical societal issue, not just a personal one. According to estimates, 8 million individuals will be over 80 years old by 2030, compared to 15% of the population in 2016. (Rand, 2016). Our nation’s current state of end-of-life care is fragmented, expensive, and unsustainable. A surplus of aggressive care is useless and detrimental to patients’ quality of life. Doctors frequently do not talk to patients or their families about what matters to them or offer solace. Those who are left behind are frequently plagued by guilt about the decisions they made at the moment without fully understanding their loved one’s intentions.
Luckily, individuals, locations, and organizations are seriously considering ways to enhance the standard of care and aid in planning end-of-life care. So, what is End-of-life care? The U.S. Department of Health and Human Services (2022) defines end-of-life care as the phrase used to describe the assistance and medical attention provided in the moments preceding death. According to Helpguidewp (2022), this kind of care does not only take place just before breathing and heartbeat end. Elderly persons frequently have one or more chronic illnesses and require substantial care in the days, weeks, and even months leading up to their passing. Depending on a person’s preferences, requirements, or decisions, the end of life may take numerous forms. Several people may prefer to pass away at home, while others may receive care in a hospital or other institution until the very end. Most people prefer to be around their loved ones, while some frequently leave when they are alone. When it is possible, there are actions you may do to help your loved one die peacefully, respect their preferences during their final days, and act following those requests.
Problem Statement
A) Significance of the problem-related end-of-life care
End-of-life care is a strategy that helps people (adults and children) and their relatives deal with issues brought on by a life-threatening disease. Through the early detection, accurate assessment, and treatment of pain and other issues, whether physical, psychosocial, or spiritual, it avoids and alleviates suffering. Suffering must be addressed on more than just a physical level. A team approach is used in end-of-life care to support patients and their caretakers. Addressing practical requirements and offering bereavement counseling are included in this. It provides a system of assistance to assist patients in remaining as active as possible until death. The human right to health specifically recognizes the need for end-of-life care. It ought to be delivered through person-centered, integrated health services that pay close attention to each person’s unique requirements and preferences.
Numerous illnesses necessitate end-of-life care. Adults who require end-of-life care predominately have chronic illnesses such as diabetes (4.9%), chronic respiratory disorders (10.5%), AIDS (6.7%), cardiovascular diseases (37.5%), and cancer (38%) (Luna-Meza, 2021). Numerous other illnesses, such as congenital abnormalities, drug-resistant tuberculosis, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, and multiple sclerosis, may call for end-of-life care. Two of the most common and critical symptoms of patients in need of end-of-life care are pain and breathing difficulties. For instance, 68% of people with a cardiovascular illness or chronic obstructive pulmonary disease and 83% with cancer or AIDS would feel moderate to severe pain at the end of their lives. Opioids are necessary for pain management. Additionally, common physically distressing symptoms like dyspnea can be treated with opioids. It is morally required to treat such symptoms as soon as they appear in order to minimize suffering and uphold a person’s dignity.
B) Challenges Unique to the United States
In the United States, many different ethnic groups coexist while each is practicing and adhering to its distinctive faith and set of end-of-life beliefs. This reality, together with several special interest groups, scientific developments, and catchphrases like “fight the illness,” “combat cancer,” and “cheat passing away,” have led to a climate of excessive expectations among the general public, even the educated elite. The fact that we view terminal and life-threatening illnesses as foes to be vanquished only reinforces our erroneous belief that we will live forever. The Nixon administration’s term “War on Cancer” has evolved into contemporary war cries for illness. All of this, regrettably, signifies a general erosion of our perception of reality.
First and foremost, the general public’s attitude has primarily neglected the fundamental biological character of cancer as a mutation of one’s tissues. Instead, cancer is portrayed as an external threat that must be defeated. Despite its good intentions, screaming “Overcome!” may have surprising effects, particularly on patients who are “losing” the battle; it can depress and demotivate the human soul at its weakest. The suffering patient feels humiliated because their spirit and trust in personal courage are judged by the level of “success” in their battle against cancer rather than accepting illness as a disorder in their body.
This warlike mentality sets off an overzealous pursuit of little increases in life expectancy, which almost always occurs in terminal instances. Unfortunately, the pain and suffering that the terminal patient must endure for little, often even nonexistent, improvements in life expectancy is the only thing more remarkable than the financial cost thus experienced near the end of life. The patient lives out his final few days linked to a drip in a hospital bed instead of facing imminent death in a pleasant setting with humanely managed suffering to increase the quality of life. The person dying is the main loser, and society as a whole is the secondary loser because we are responsible for paying these costs when the person they intended to help does not benefit from them (and frequently suffers a great deal as a result). The narcissistic mindset many treating physicians adopt only exacerbates the issue. They view themselves as winners or losers depending on how well a treatment works, eventually forgetting that everyone will eventually pass away. Both doctors and researchers frequently view death and dying as a failure of their efforts as opposed to a normal phase of aging.
Any discussion of paying physicians for end-of-life care quickly descends into loaded jargon and “death panel” nomenclature, significantly aggravating the situation. Less than 15% of healthcare educational institutions offer their students instruction on death and dying. One survey shows that less than 19% of medical students and residents have obtained structured end-of-life care education. This is because the influence is so strong, and there is such an ambiguous focus on the borderline afterlife as an effective solution for a doctor. Nearly 55% felt unequipped to deal with their sentiments regarding death, and 39% felt unprepared to address patients’ anxieties about dying. According to 40% of respondents, taking care of the psychosocial needs of dying patients was not a core competency, and these patients were not good teaching cases (Sullivan et al., 2019).
Instead of treating the whole person as a multifaceted being, healthcare in the United States generally concentrates on identifying and treating the abnormal discoveries inside an individual. All too frequently, focusing on diseased tissue has taken precedence over the human context in which medicine should be conducted. In the intensive care unit (ICU), where assessing electrolytes and respiratory and cardiac measures take precedence over any other elements of the patient’s health, regular 3-minute contact between a patient and an intensivist is an example of how science is elevated above humanity. The average ICU is designed so that there is little room to investigate, comprehend, acknowledge, or carry out a specific patient’s wish, which points to a primary defect in hospital medicine that can only be fixed by comprehending and examining hospital operational culture.
C) Financial and societal consequences
There are numerous financial and societal repercussions of high end-of-life costs. According to studies, patients who passed away in the ICU had a much lower quality of life than those who passed away at home, and their careers also showed signs of ongoing psychological problems. Furthermore, Zhang et al. (2019) argue that acceptance of hospice and comfort care, as well as end-of-life care, was significantly higher and, as a result, less expensive when end-of-life care and advanced care planning were discussed during physician-patient discussions. Significantly, doctors who can stay involved and “present” for their dying patients—by inviting questions, responding to them, and treating patients with respect—have the power to enhance a dying patient’s quality of life (Zhang et al., 2012). Doctors and oncologists also deal with personal difficulties in addressing death and dying.
According to a significant study carried out in three hospitals in Canada, more than half of oncologists experience feelings of failure, self-doubt, despair, and helplessness (Granek et al., 2019). These oncologists’ unrecognized sadness has occasionally resulted in inattentiveness, impatience, irritation, emotional tiredness, and burnout. They have the option of separating from and withdrawing from terminally ill people. A comparable proportion of doctors claimed that unresolved sadness affected their decisions on treatment for the following patients, leading to more aggressive therapy and hesitation to suggest palliative care or hospice. Some oncologists are reluctant to start and deal with end-of-life care due to these individual considerations.
D) Issues Affecting End-of-Life Care
The World Health Organization describes end-of-life care as a methodology that enhances patients’ and their family’s quality of life while preventing and alleviating the suffering caused by a life-threatening illness. Nevertheless, conversations regarding end-of-life care are still too infrequent for several reasons, including society’s resistance to accepting death as a natural process, overmedicalization, and a focus on curing disease. According to the scant research on end-of-life care, it is advisable to take a multifaceted strategy to solve the problems of delivering adequate end-of-life care in the U.S. Clinicians were frequently uninformed of their patients’ desires for end-of-life care (directives such as “do not intubate” or “do not resuscitate”). Critics have occasionally claimed that providing end-of-life care equates to abandoning patients. We believe this is a limited perspective, much like the idea that a doctor’s effectiveness is determined by how long they live. In no way does accept end-of-life care imply giving up on patients. Instead, it adds to current therapy regimens.
A patient’s appropriate end-of-life care should be an option for serious consideration if treatment fails and they are still terminal. The patient must be aware of their choice to get end-of-life care, which is intended to increase the quality of life as one approaches death, or to continue receiving treatment that might provide them a few more weeks or months of survival but have a significant impact on their quality of life. Although it is understood that patient discretion is a fundamental tenet of medicine, it has been neglected in end-of-life care. Most frequently, patients are neither entirely informed about the implications of medical interventions nor have they considered the need for planning for their death. Although asking hospital patients about their advanced directives is required by law in every state, the practice has become nothing more than a short check-the-box activity in the triage section of emergency departments. Legislation alone is unable to affect cultural change. Advanced end-of-life care discussions are far more relevant when held with a doctor familiar with the patient, such as a family physician or a subspecialist in managing chronic conditions.
Solutions
Every one of us must consider the problematic possibility that a parent or other close relative will have a fatal illness. When that time comes, we will want to take care of their bodily and mental needs, honor their requests, and let them pass away in peace, just as we would want for ourselves. Unfortunately, our healthcare system has lagged despite changes in American death patterns. It was created in an era when illness decline or abrupt death were everyday occurrences. We now have the technology to extend life when death draws near, and people are living longer with various chronic illnesses on a far more regular basis. Patients’ wishes are frequently overlooked due to inadequate communication in the fragmented, expensive, and intensive end-of-life care industry. How seriously ill people who are nearing the end of their lives are cared for needs to change as baby boomers age and add to the numbers of the elderly and the dying. The following is a list of some of the solutions.
A) Insist on making preparations for the unavoidable.
Making an advance directive and discussing end-of-life care preferences with family members should be as routine and natural as financial planning. Family members make far too many care decisions based only on their best assumptions about the preferences of their loved ones. Although uncomfortable, talking about death and dying is vital. We may promote these crucial talks by incorporating advanced care planning into activities we currently engage in regularly, such as utilizing smartphones or choosing work benefits.
B) Refine the Medicare system.
Many people nearing the end of their lives are at risk due to two significant gaps in health insurance coverage. Medicare does not cover social supports, such as time off for family carers or care coordination management. It is time to amend Medicare policy to include benefits for people with terminal illnesses who need social support and care coordination from a designated care team. Team-based organizations would meet patient needs with the help of this type of insurance. Medicare should put its hospice benefit integration into Medicare Advantage and other demonstrations to the test. It will be easier for persons who are very ill to receive the care they require and for their carers to provide it if efficiency and delivery are improved. This will prevent them from jumping through hoops and dealing with a bureaucracy not created with their needs in mind.
C) Evaluate the success of end-of-life care.
We can only comprehend, expect, and encourage high performance from caregivers once we grasp how well healthcare and social services support people as they approach the end of their lives. Therefore, we must create measurements that can offer openness and accountability. These metrics must track patient preferences and families’ experiences as they provide care for their loved ones and the quality of care.
D) Improve the end-of-care training of professionals.
Little instruction about the needs of patients in their final years or days of life is provided in graduate medical education (Colich, 2020). To increase the number of physicians, nurses, nurse practitioners, social workers, and other health care professionals who have the necessary training to deliver end-of-life care effectively and compassionately, we must establish financial and professional incentives. There is disagreement over the best time to start preparing, according to a study conducted by Kehl (2015) with the working title “How hospice staff members prepare family caregivers for the patient’s final days of life.” Previous studies have shown that the ideal time to train caregivers may vary significantly from person to person. 22 To assess the frequency of preparation, it is vital to gauge the family member’s response to the prepared material. The acceptance of preparation is facilitated by repetition.
E) Obtain community feedback on improved care delivery models.
There will be changes in how health care is delivered due to addressing this pressing demand. To improve end-of-life care, governments and business executives must take the initiative, but a general agreement that such a change is necessary is also necessary. Only on a local scale is this possible. Some towns will rise to the occasion. Those that accomplish this should be praised as role models, and others should benefit from the insights they acquire.
Conclusion
We all aspire to live as long and as well as we can. However, eventually, our bodies turn on us, and we start to exhibit the apparent symptoms of aging. Moreover, as we get older, we have to take a second look at who we are now, embrace it, and think seriously about how we want to live out the remainder of our lives. This justifies the need to investigate the subject of planning for end-of-life care. Unfortunately, our healthcare system has lagged despite changes in American death patterns. We now have the technology to extend life as death draws near, and people are living longer with multiple chronic conditions on a much more regular basis. Patients’ wishes are frequently overlooked due to inadequate communication in the fragmented, expensive, and intensive end-of-life care industry. However, implementing the above solutions would ensure that end-of-life care is delivered to benefit both the care provider and the patient.
References
Colich, A. (2020, December 2). Preparing nurses for end-of-life care. Insight Digital Magazine. Retrieved September 25, 2022, from https://www.thechicagoschool.edu/insight/health-care/preparing-nurses-for-end-of-lifecare/
Helpguidewp. (2022, August 29). Late-stage and end-of-life care. HelpGuide.org. Retrieved September 25, 2022, from https://www.helpguide.org/articles/end-of-life/late-stage-and-end-of-life-care.htm
Kehl, K. A. (2015, February). How hospice staff members prepare family caregivers for the patient’s final days of life: An exploratory study. Palliative Medicine. Retrieved September 25, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4312517/
Luna-Meza, A., Godoy-Casasbuenas, N., Calvache, J. A., Díaz-Amado, E., Gempeler Rueda, F. E., Morales, O., & de Vries, E. (2021). Decision making in the end-of-life care of patients who are terminally ill with cancer–a qualitative descriptive study with a phenomenological approach from the experience of healthcare workers. BMC palliative care, 20(1), 1-10.
Narcotic Drugs Technical Publication (2019). The Report of the International Narcotics Control Board for 2019 (E/INCB/2019/1) https://www.incb.org/documents/Narcotic-Drugs/Technical-Publications/2019/Narcotic_Drugs_Technical_Publication_2019_web.pdf
Rand, E.R., (2016). Six Steps to Prepare for End-of-Life Care. https://greatergood.berkeley.edu/article/item/six_steps_to_prepare_for_end_of_life_care
Sullivan, A.M., Lakoma, M.D., Block S.D., (2019). The status of medical education in end-of-life care. J Gen Intern Med; 18 (9): pp.685-695.
U.S. Department of Health and Human Services. (n.d.). Providing care and comfort at the end of life. National Institute on Aging. Retrieved September 25, 2022, from https://www.nia.nih.gov/health/providing-comfort-end-life
World Health Organization. (2020). Assessing national capacity for the prevention and control of noncommunicable diseases: report of the 2019 global survey.
Zhang B., Wright, A.A., Huskamp, H.A., (2019). Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med; 169(5): pp.480-488.
Zhang, B., Nilsson, M.E., Prigerson, H.G. (2012). Factors important to patients’ quality of life at the end of life. Arch Intern Med; 172(15):1133-1142.
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