The good news is more people are living longer. Reducing maternal and infant mortality has increased populations while advanced healthcare solutions prolong life. The bad news is the world is not prepared.
National interests have yet to admit or fully grasp the implications, and political attempts to control these changes have failed miserably. As the world plague of non-communicable diseases (NCDs) threatens the United States, it raises conflicting viewpoints on the quality of life.
Four out of 10 Americans suffer from the chronic disease health consequences which jeopardize their quality of life, shorten life expectancy, and create mental and socio-economic burdens (Chatterjee, et al., 2014).
bitte lässt mich sterben (Please Let Me Die)
An ultimate existential decision for many
The consequences of chronic diseases create an individual or family responsibility rather than a societal issue. Nonetheless, at the macro-economic level, the impact affects the prosperity and wellbeing of society. Many face medically-prolonged life alone despite the physical and emotional pain and suffering of non-communicable diseases: cancer, cardiovascular diseases, chronic respiratory diseases, diabetes mellitus, mental health problems, and musculoskeletal conditions.
Advanced healthcare technologies offer valued months or years of life to patients, but they also provide continued misery to others. Modern medicine rests on survival indices and triage — identifying patients who require resources urgently and have the best chance of survival. This decisive Yin-Yang principle holds that each life matters, but resources scarcity challenges attempts to ensure equity.
So, well-intentioned social impact actors find themselves ethically and morally challenged to align their current and future work with the most favorable outcomes rather than the belief that each life matters. Among the unanswered dilemmas is how these drivers will handle the impending existential choice posed by end-of-life solutions.
The case before the U.S.
As technology and science extend lives, they burden the economy and resources of high- and low-income nations. The consequent prevalence of NCDs presents universal concerns. (See Figure 1.)
Figure 1: WHO 2010 (Alwan, 2011)
The data in Figure 1 shows males in low- or high-economies remain at the mercy of NCDs, even multiple ones. Drilling down, data shows Sub-Saharan Africa has the largest share of the penalties as do Black and Latino populations.
The Kaiser Foundation has put numbers on the NCD issue facing the United States (The U.S. Government and Global Non-Communicable Disease Efforts, 2019):
NCDs cause more than two-thirds (71%, around 41 million) of all deaths annually and remain among the leading causes of preventable illness and related disability.
Cardiovascular diseases, cancer, chronic respiratory diseases, and diabetes account for more than 80% of these deaths.
Other NCDs cause blindness or deafness, birth defects, mental and neurological disorders (including Alzheimer’s disease), renal, and autoimmune diseases.
Current statistics show, “the United States also has a higher mortality rate than the global average for all NCDs and for the five leading NCDs” (Chen, Prettner, & Bloom, 2018). A Rand Study reports, “nearly 150 million Americans are living with at least one chronic condition; around 100 million of them have more than one” (Irving, 2017).
Of the U.S. population, 28 percent live with three or more NCDs and use 67 percent of healthcare spending. And, 12 percent of the population report five or more NCDs for 41 percent of the healthcare budget (Irving, 2017). The CDC labeled NCDs the “Leading Drivers of the Nation’s $3.3 Trillion in Annual Health Care Cost” (Chronic Diseases in America, 2019).
Despite America’s unrivaled supremacy in healthcare technology, it’s delivery system remains porous. Profit drives highly-competitive providers, pharmacies, treatment centers, and research facilities without critical integration of tools and purpose. And, an intransigently-immovable bipartisan “governance” fails to override its own self-interests.
The same people who created the technology and pharmaceuticals benefiting the world population lobby the U.S. government to protect their interests. The virtual obliteration of the Affordable Care and Prevention Act deprives lower-income families of insurance and disproportionately impacts the middle-class.
The U.S. does have pockets of population culturally committed to elder care. Other pockets have local access to diets of fish, fresh produce, whole grains, and outdoor cardiac exercise. Still, NCDs multiply in dense urban environments, marginal communities everywhere, and poorly educated populations. And, the problem deepens where these negative factors combine in habitually-underserved and disenfranchised populations.
The ultimate dilemma
The negative impact of non-communicable diseases goes far beyond the individual; it threatens global prosperity, communities’ social fabric and hard-won moderate gains in health and development – particularly those brought about through the health-related 2015 Millennium Development Goals (Facts and Figures, 2019) and the one envisioned in Sustainable Development Goals 2030 (Sustainable Development Goal 3, 2019).
Extended life in the throes of NCDs pushes many individuals towards suicide, euthanasia, or assisted-death. “Suicide” is the voluntary taking of one’s life. “Euthanasia” refers to the deliberate withholding of care necessary to sustain life given prompted by the irreversible deterioration of a patient’s quality of life. “Assisted suicide” refers to a patient’s decision to terminate his/her life with drugs administered by a doctor, aide, or mechanical dispenser.
End-of-life outcomes pose difficult moral and ethical problems —
From 1999 to 2016, suicide rates in the U.S. increased by 28 percent with men four times more likely to commit suicide than women (Suicide, 2019). “Depression is common among people who have chronic illnesses” (Chronic Illness & Mental Health, 2019). In a vicious cycle, depression leads to chronic conditions, and chronic conditions lead to depression. “The associations between chronic health conditions and passive suicidal ideation [the desire to die], as well as the mediating role of depressive symptoms, strongly suggest that middle-aged and older adults who are diagnosed with chronic conditions should be screened for depression early and often” (Lutz, Morton, Turiano, & FIske, 2016).
Brian K. Ahmendani, the leading advocate for a zero-suicide metric, has produced many studies connecting suicide with the suffering attached to NCDs. “Seventeen physical health conditions were associated with increased suicide risk after adjustment for age and sex (p<0.001); nine associations persisted after additional adjustment for mental health and substance use diagnoses” (Ahmendani et al, 2017).
The U.S. treated suicide as criminal before 1961. Since then, observers consider suicide as a guiltless act of a person lacking full mental capacity at the time of the act. Most consider it in conflict with good social order. Prevention focuses on detection, symptoms, and prior care.
Passive euthanasia is a non-voluntary or involuntary act to end the life of a suffering person without their consent or ability to consent. Both options are illegal throughout most of the world. But advocates for assisted suicide have made legislative progress permitting what they call “Right to Die” or “Death with Dignity” in some high-income countries. Since 2015 in the U.S, alone, California, Colorado, District of Columbia, Hawaii, Oregon, Vermont, and Washington have passed legislation acceptable to 67 percent of Americans, a trend that has undoubtedly increased (Dugan, 2015). Of the statistics available (Ordway, 2017), few have requested permits, approximately 25 percent changed their minds or died without medication, more than half were women, white, and educated, and 60 percent had cancer.
These choices present difficult moral and ethical issues for individuals, groups, and professionals.
Old voices and new
“A man named Bob had stomach cancer and, while he managed his illness more or less successfully, after about 3 years it got the best of him and treatments were ineffective. During his final months he was vomiting blood, lost about half his body weight, was incapable of walking, and experienced a degree of pain that he never had before…,he preferred to live out his remaining days at home, and his wife took on the responsibilities of caring for his basic needs as he lay in bed. A meticulous planner, Bob foresaw the possibility of a horrible end to his life and consequently stockpiled a lethal dose of medication; as a backup precaution, he had a loaded gun by his bed. Even with painkillers, his suffering eventually became overwhelming; he resolved to end his life, but by then was too weak to take the drug himself or even pick up his gun. He asked his wife to assist him, but she couldn’t bring herself to do it. He turned to family members, friends, or anyone who might be there visiting. While sympathetic to his struggle, they all refused, many out of fear of being prosecuted for murder. He finally died at home in his bed” (Fieser, 2015).
The world’s leading religions have taken similar stands on euthanasia, mercy-killing, medically-assisted death, and other means of voluntarily and involuntarily ending life. Faith leaders generally hold only the Supreme Being has mastery over the beginning and end of life. Any attempt to co-opt that authority is prima facie evil. Teachers wrestle with this principle in cases of war, martyrdom, self-sacrifice, and self-defense, but they accept an individual may give up his/her life for a greater good.
Theologians struggle with balancing individual rights, universal teaching, and natural law in the presence of advanced medical options. All faith-leaders consider the forced or involuntary death of a patient as inherently evil, and most continue to rule voluntary assisted death as immoral and medically unethical. And, recent thinking raises concerns these “decisions” are circumstantially reserved to citizens of economically-advantaged classes and cultures.
Buddhism’s commitment is “to do no harm.” This prohibits the intentional ending of life and, thus, voluntary or non-voluntary euthanasia. The Dharma offers scenarios of individual deaths for interpretation and discussion. “The most common position is that voluntary euthanasia is wrong because it demonstrates that one’s mind is in a bad state and that one has allowed physical suffering to cause mental suffering” (Buddhism, euthanasia and suicide, 2009).
Judaism condemns all forms of suicide based on Deuteronomy 30: 19: “I call heaven and earth to witness against you this day, that I have set before thee life and death, the blessing and the curse; therefore, choose life, that thou mayest live, thou and thy seed.” Humans are created in the image of God; “It may thus not be terminated or shortened because of considerations of the patient’s convenience or usefulness, or even sympathy with the suffering of the patient” (Religious Perspectives On Euthanasia, 2011). Rabbis in Reformed Judaism, contend, “we do almost anything to relieve the suffering of the terminally-ill, but we do not kill them, and we do not help them kill themselves” (On the Treatment of the Terminally Ill, n.d.).
Roman Catholic teaching by Pope Francis noted how increasingly and costly treatments are limited to the privileged; “this raises questions about the sustainability of health care delivery and about what might be called a systemic tendency toward growing inequality in health care” (Wooden, 2017). The Pope cautioned, “Greater wisdom is called for today, because of the temptation to insist on treatments that have powerful effects on the body, yet at times do not serve the integral good of the person” (Francis, 2017). Refraining from overzealous and disproportionate medical measures is ethically acceptable, but “from an ethical standpoint, it is completely different from euthanasia, which is always wrong, in that the intent of euthanasia is to end life and cause death” (Francis, 2017).
Protestant disciplines generally oppose euthanasia and assisted death, the most conservative unwavering in their opposition:
1. Anglican Archbishop of Canterbury Rowan Williams has stated that, although “There is a very strong compassionate case” (Religious Perspectives On Euthanasia, 2011) for physician-assisted dying, the Anglican Church remains opposed to the practice. But Nobel Peace Prize Winner and Anglican Archbishop Desmond Tutu says, “Dying people should have the right to choose how and when they leave Mother Earth. I believe that, alongside the wonderful palliative care that exists, their choices should include a dignified assisted death” (Tutu, 2016).
2. Baptist Conventions teach assisted dying violates the sanctity of human life.
3. Lutheran Synods affirm deliberately destroying life contradicts the Christian conscience; yet, “we also recognize that responsible health care professionals struggle to choose the lesser evil in ambiguous borderline situations — for example, when pain becomes so unmanageable that life is indistinguishable from torture” (Religious Perspectives On Euthanasia, 2011).
4. Methodists accept the individual’s freedom of conscience to determine the means and timing of death. While few Regional Conferences have endorsed the legalization of physician-assisted dying, “‘Euthanasia’ or ‘mercy-killing’ of a patient by a physician or by anyone else, including the patient himself (suicide) is murder” (Religious Perspectives On Euthanasia, 2011).
5. Presbyterian groups affirm individual freedom and responsibility. “It has not asserted that hastened dying is the Christian position, but the right to choose is a legitimate Christian decision” (Religious Perspectives On Euthanasia, 2011).
Islam holds life is sacred because Allah gives it, and Allah chooses how long each person will live. Human beings should not interfere with this. Sahih Bukhari, 4(56) 669 narrated by Jundub, reports, “Allah’s Apostle said, ‘Amongst the nations before you there was a man who got a wound, and growing impatient (with its pain), he took a knife and cut his hand with it, and the blood did not stop till he died.’ Allah said, ‘My Slave hurried to bring death upon himself, so I have forbidden him (to enter) Paradise’.” Al-Quran Surah 31. Luqman, Ayah 17 reiterates, “O my son, establish prayer, enjoin what is right, forbid what is wrong, and be patient over what befalls you. Indeed, [all] that is of the matters [requiring] determination.” Quran Surah An-Nahl 16: Ayah 61 cautions, “And if Allah were to impose blame on the people for their wrongdoing, He would not have left upon the earth any creature, but He defers them for a specified term. And when their term has come, they will not remain behind an hour, nor will they precede [it]” And, Al-Quran Surah 3. Imran, Ayah 17 holds, “And it is not [possible] for one to die except by permission of Allah at a decree determined. And whoever desires the reward of this world – We will give him thereof; and whoever desires the reward of the Hereafter – We will give him thereof. And we will reward the grateful.”
Teachers making Fatwas equate euthanasia with murder, but more recent rules make room for allowing doctors to withhold extraordinary and ineffective means for terminal patients. Saudi Arabia’s grand mufti Shaikh Abdul Aziz bin Abdullah bin Baz, its top jurisprudential authority, has ruled that euthanasia or mercy-killing is not Islamic (Aramesh & Shadi, 2007).
Egyptian scholar, Sheikh Yusuf al-Qaradawi’s Fatwa, considers euthanasia murder “allowing the withholding of treatment that is deemed useless (Aramesh & Shadi, 2007). And, Dr. Muzzamil Siddiqi, once president of the Islamic Society of North America, taught. “If the patient is on life support, it may be permissible, with due consideration and care, to decide to switch off the life-support machine and let nature take its own time” (Aramesh & Shadi, 2007).
Teachings across different traditions do not differ fundamentally. “Since human life is sacred in Islam and is a gift from God, some Muslim scholars argue that intentionally hastening death should be/remain prohibited, because euthanasia and suicide imply spurning this gift and degrading the sacredness of human life” (Rashi, 2011, p. 96).
The conundrum continues
Humanity is facing the impact of chronic diseases in conflict with the increase in life expectancy where life expectancy has been the sole measure of the quality of life. This amplifies the importance of multidimensional metrics for well-being. This discourse is nothing new in health philosophy, the concept of Quality of life (QoL) emerged in the 1980s (CDC, 2016c). It is another example in which healthcare policymakers and practitioners did not utilize the knowledge they have in their archives.
Even health professionals understand the system does not work and clinical procedures do not improve the QoL for chronic condition patients. This is apparent from their choices for themselves.
“Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds–from 5 percent to 15 percent–albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him” (Murray, 2011).
The world’s health problems, especially relating to Non-communicable Diseases, are increasing within populations that are living longer. Although religious principles and medical ethics prohibit voluntary and involuntary steps to end life, increasing legislation among economically-advantaged Western nations has advanced advocacy of individual rights in right-to-death decisions. Moreover, in the face of shifting demographics, younger populations face the enlarging threat of the financial and social burden presented by the aging. All these converging factors cry for attention and effective far-reaching solutions towards investment in improving quality of life rather than prolonging life.
There is no logic in continuing to waste the country’s energy and resources amid political polarization given what everyone knows about the consequences of NCDs to the U.S. The cost of political inaction would be tremendous. The situation demands proactive actions now for better outcomes, or it remains in limbo exposing many people to harm, loss of life, and expenditure of more resources later.
Understandably, it may be easier to react to visible and immediate issues or threats like focusing on treatment—or allocating more resources to the U.S. border security. When threats such as Zika and Ebola virus (communicable diseases) arose, the US government spent vast sums on proactive prevention with the best practices needed to foil NCDs. The U.S. response to these threats demonstrated there is value for money in investing in strategic prevention and proactive risk mitigation rather than waiting until risks materialize and become a protracted national issue.
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Author Bio:
Asaad Taha, Ph.D., MPS®, PRINCE2® is an Arab/English bi-lingual consultant, author, speaker, and thought leader in Social Impact strategy, systems design, and delivery solutions. Founder and Managing Partner of S4F Solutions™, he is Principal Advisor to Nile Harvest™ and currently works with the Program Design Topical Interest Group at The American Evaluation Association (AEA) and Patient Safety Cultural Technical Expert Panel at the Agency for Healthcare Research and Quality (AHRQ).