Open access peer-reviewed chapter
Abstract
Health services received at the end-of-life (EoL) are accepted as a basic human right. EoL is a very difficult period for patients and their families. Patients in the EoL period should be provided palliative care (PC) services that will increase their quality of life, so their families. Especially pain and other symptoms that the patient faces should be relieved during PC, and grief counseling should be provided to families in the mourning period after the patient’s death. A significant majority of patients who need PC services are cancer patients. Health professionals, including doctors in the first place, should conduct their relationships between patients’ families and with patients who need PC in accordance with biomedical ethical principles. The biomedical ethical principles that will protect the boundaries that should not be exceeded are as follows: (1) explaining that the person can participate in decisions about their treatment: Respect for autonomy; (2) explaining that they should not suffer any healthcare-related harm while receiving healthcare services: Nonmaleficence; (3) explaining that the health services they receive should be evidence-based and useful for the patient: Beneficence; and (4) explaining that the patient can get the health service she needs as much as she needs: Justice.
Keywords
- end-of-life
- palliative care
- biomedical ethics
- autonomy
- nonmaleficence
- beneficence
- justice
1. Introduction
At the present time, relieving the pain and suffering of terminally ill patients is a basic human right [1]. However, accessing this right is unfortunately not given equal importance all around the world. In a world where death is inevitable, people deserve to die with dignity, that is, to die a “good death.” This includes making their own choices, not prolonging death unnecessarily, being considered a complete individual, and giving importance to their family and values [2].
Palliative care (PC) centers have become increasingly important as places that strive to provide a decent death. Their numbers have increased over time since they first emerged, but they are still not at the desired level [3].
Societies have taken their share of the advances in science and technology, which has affected the demographic structure, increased the elderly population and changed the disease patterns. Starting from developed countries, communicable diseases have left their place to non-communicable diseases [4]. These new balances have led to a higher number of healthcare professions and healthcare professionals, and this has made healthcare services more and more complex [5]. Aside from all these, society’s expectations of modern medicine have changed, particularly in developed western countries, deaths at home have been replaced with deaths at hospitals [6], which has required ever more careful consideration of the relationship between patients and healthcare professionals.
Morality refers to a set of local norms, rules, and values that are developed by societies to regulate human relations. Ethics, on the other hand, universally refers to a philosophical reflection or questioning about morality, and it is divided into two categories: theoretical ethics and applied ethics [7].
2. Palliative care
Although the history of PC services dates back many years, the first hospice in modern times was opened in the United Kingdom in 1967, and then it spread first to Western Europe and then to the rest of the world [8, 9]. The modern PC has emerged thanks to the groundbreaking work of Dame Cicely Saunders and the Hospice Movement that she started [10].
PC centers provide end-of-life services. This end of life is also referred to as terminal illness, with no common definition or clear time frame for when it occurs [11]. The National Cancer Institute defines the end of life as [12] “care given to people who are near the end of life and who no longer receive treatment to cure or control their disease.”
56.8 million people worldwide need PC services, more than half of whom have priority [3]. Twenty-eight percent to 38% of these individuals are cancer patients [3, 13]. For terminally ill cancer patients who receive PC services, the last 6 months of their lives are particularly important, as their physical condition worsens and their symptoms get heavier, and during this time, their physicians tend to explain their prognosis [14, 15, 16, 17].
The definition of PC is significant for presenting a framework for the service to be provided. This definition has evolved over time, taking its present form. Though defined by other authors before, the first definition was published by the WHO in 1990 [18], followed by a PC definition for children in 1998 [19]. By 2002, the definitions of PC for adults and children were revised [20] and in 2020, the current definition of PC has become as follows [3]:
It includes a comprehensive healthcare delivery system that involves preventive, curative, and rehabilitative health promotion services and PC services [5]. Hence, PC should be considered a healthcare need and a part of comprehensive healthcare services [21, 22]. Based on the definition, some characteristics of PC services include the following. Associated with life-threatening diseases, PC services pay more attention to the social aspect of patients compared to other healthcare services. Besides, the aim is to eliminate the patient’s complaints and to increase their quality of life in their final days, rather than treatment. While doing this, PC considers the physical, psychosocial, and spiritual wishes of the patient. A higher quality of life for the patient will increase the quality of life of their loved ones. For example, the patient and their loved ones will be able to go out and have a meal together or spend time in a park in nice weather. While other healthcare services center around the patient and their treatment, PC also considers the patient’s close circle, their family, and the grieving process of the family.
Some other characteristics are not included in the definition of PC [3]: it considers death a normal process; it does not try to accelerate or delay death, rather it involves supporting the family in mourning after the patient’s death.
Patients’ relatives may have different expectations from PC. For example, some might expect PC services to prolong the patient’s life rather than improve their quality of life. This does not fit the original philosophy of PC and causes numerous ethical problems, which will be mentioned further in this article.
3. Biomedical ethical principles
Tom L. Beauchamp and James F. Childress have defined four basic biomedical ethical principles [23]: (1) Respect for autonomy; (2) Nonmaleficence; (3) Beneficence; and (4) Justice.
3.1 Respect for autonomy
Autonomy (self-governance, self-rule) is a person’s ability to manage themselves and to express their opinion freely regarding decisions about them, without being subject to external pressure [24]. Autonomy also involves the knowledge one has about the medical procedures that will be applied to them. Here, the source of information is the physicians, and the receiver is the patients. However, there is an asymmetry of information between patients and physicians, which occurs when one party has more information about the transaction than the other one, which may allow the better-informed party to use the less-informed party [25].
Information asymmetry is a situation where patients have far less knowledge than physicians, who specialize in the subjects of diseases, treatment options, expected outcomes, and even costs [26]. In this context, autonomy includes the individual’s abilities, skills, and characteristics that involve self-management capacities like understanding, reasoning, and negotiating the information given to them about the medical procedures to be performed, and being able to manage and make independent choices about these procedures [23]. Therefore, the principle of respect for patients’ autonomy means that each patient has the right to determine which medical interventions they accept or refuse, in other words, decide on the things that affect their own lives [27].
This medical decision-making capacity has four key elements [28]: (1) understanding the benefits, risks, and alternatives of a proposed treatment or intervention, (2) being able to evaluate what these benefits, risks, and alternatives entail, (3) being able to reason and make decisions, and (4) being able to express their choices. If a patient is to undergo a treatment or intervention, or if they are to receive no treatment, their medical decision-making capacity should be considered [28, 29].
With advanced age and diseases like cancer and dementia, cognitive functions tend to suffer, which creates serious obstacles to autonomy [30, 31]. This becomes more evident towards the end of life and largely requires the appointment of a proxy to make decisions on behalf of the patient [32].
The principle of respect for autonomy emerges in an application, which is called “informed consent,” in medical ethics, with two aspects (two ways): one of these aspects is informing the patient to eliminate the information asymmetry, and the other is informing patients and obtaining their “consent” about the relevant treatments or interventions [7].
In the process of informed consent, insufficient information is the most important threat to the rationality of patients’ medical decisions. This presents as an inability to explain or understand the information. In the first stage of informed consent, the patient must fully comprehend the information given to him/her by the physicians. Medical expressions and medical facts often have a distinct jargon, and they need to be simplified. This simplification may not always be appropriate for the patient, resulting in messages not being fully answered. In the second stage, other conditions like the patient’s education level, knowledge level, the severity of their illness or pain, and their level of consciousness can make it difficult to understand what is told.
3.2 Nonmaleficence
Based on the former principle, a new one has emerged. Often attributed to Hippocrates, “primum non nocere” (above all, [first] do no harm) constitutes the basic principle of this new discipline regarding patient safety [33, 34]. “Patient safety is not only state of the art but also a new standard of care” [35]. “Patient safety is freedom from accidental injury” [36] or “patient safety is the prevention of harm to patients” [35]. Based on these definitions, nonmaleficence practices are those that prevent accidental or preventable injuries that might be caused by medical services that are performed to improve patients. Here, the harm done to the patient may result in nothing, or it may result in death.
The “To Err Is Human” report published by the Institute of Medicine in 2000 reported medical error as the eighth most common cause of death for 44,000–98,000 people, which was a complete shock [36]. This report was significant for expressing this fact so clearly for the first time. Another research observed that medical errors were the third most common cause of death with 251,000 deaths [37].
The principle of nonmaleficence involves not only the damage to the individual directly by healthcare services but also the damage that can emerge in various layers of the society due to the misuse of resources, in other words, negative externality. For example, having limited cancer screening programs due to a lack of resources will create a lower incidence of early diagnosis of cancer. Some of these cases will be diagnosed in the advanced stage of the disease, which will require extra time, effort, and costs for treatment. Another example is antibiotic resistance, which increases due to excessive and unnecessary antibiotic use in clinics, requiring newer and more expensive antibiotics.
3.3 Beneficence
The utilitarian ethical theory emphasizes the justification of maximizing people’s well-being [38]. Ethics requires that we not only respect people’s autonomy and avoid harming them but also contribute to their well-being [23]. Given that improving the quality of life for the patient and their family is the focal point of PC services, this has a crucial perspective. Beneficence is a moral duty to do the best for patients’ welfare and to put their well-being first [39].
To be able to fully implement the principle of beneficence, decisions must be based on evidence, because such decisions are much more likely to be fairer. Practicing evidence-based medicine means integrating individual clinical expertise with a critical evaluation of the most relevant external clinical evidence from systematic research [40]. In medicine, the most common ethical dilemmas are about what constitutes patient well-being and who should decide it, which often lead to the concept of respect for patient autonomy [27].
3.4 Justice
According to the Organization for Economic Co-operation and Development, healthcare expenditures continue to increase every year [41], and the unlimited needs of humans are tried to be met with scarce resources, which have caused significant problems. How these resources are allocated to healthcare providers and then prioritized for specific services and patients are some critical ethical decisions that determine the type of healthcare a society receives [42]. In this context, the principle of justice is considered “distributive justice,” which refers to the fair, equitable, and appropriate distribution of the benefits and burdens determined by the norms that structure the conditions of social cooperation [23].
The WHO defines justice in healthcare as follows: “the absence of unfair, avoidable, or remediable differences in health status among population groups defined socially, economically, demographically, or geographically” [43]. Here, the concept of justice deems it necessary for those involved to be able to benefit from healthcare services as much as they need without preventing equality of access to healthcare services [44].
Another key issue for resource use is deciding where and how the resources should be allocated. Here, the following questions should be answered [42]: (1) Which healthcare service will be produced for whom and how much? (2) By whom, how, and where will these services be produced? (3) How will society undertake the financial burden of these services? and (4) How will the power and regulation of these services be distributed? In medicine, this means equal distribution of resources to all layers and individuals of the society, both for the healthcare policies that include the whole society, like public health and for therapeutic institutions [7].
4. Other medical ethical principles
Aside from the four basic biomedical ethical principles, we will discuss the following ethical principles: medical confidentiality, truth-telling, and futility.
4.1 Medical confidentiality
In a trust-based patient-physician relationship, medical confidentiality is a fundamental prerequisite that goes back to the Hippocratic oath [45]. Putting forth that physicians must keep their patients’ secrets, the principle of medical confidentiality is one of the most respected moral obligations in medical ethics [46]. Medical confidentiality involves respecting the privacy of others regarding their health and keeping their secrets; those who do not fulfill this obligation face criminal sanctions in many countries. A physician-patient relationship is primarily characterized by medical confidentiality, which means that physicians must remain silent about their patients’ information [47].
4.2 Truth-telling
The patient-physician relationship and communication are based on trust and telling the truth is a key way to develop and maintain this trust [48]. Telling the truth is often considered a virtue and there is almost a universal phenomenon that physicians are obliged to tell the truth and not lie [49]. Kant assumes that it is a prominent duty, to tell the truth, and deontologically, competent patients must be told the truth, no matter the consequences [50]. The obligation, to tell the truth, is accompanied by a sign of respect for the patient’s autonomy. For such cases, the question is how patients can learn the truth about themselves, given that they are entitled to full and accurate information about their medical condition [51]. For example, after diagnosing a life-threatening illness, it may seem appealing and sensible to tell the patient that it can be cured by other physicians, avoiding delivering bad news by eliminating or minimizing the severity of the condition, but it is absolutely unacceptable from an ethical perspective [52]. Still, hiding information from patients, deliberately giving false information, lying, and delivering false information without lying have occurred in nursing and medical practices for centuries [53, 54].
4.3 Futility
Most oncology patients can receive various supportive treatments to have their lives extended for a short time, which brings along prolonged suffering [55]. When treatment becomes meaningless, such treatment decisions should be reviewed. Withdrawal or withholding of life-sustaining treatment decisions are common across emergency departments and adult, pediatric, and neonatal intensive care units, and they are often made before most deaths occur [56]. Withdrawal or withholding of life-sustaining treatment cannot be considered murder or suicide [57], nor passive euthanasia [55].
Withdrawal or withholding of life-sustaining treatment has been increasingly used in institutions that provide end-of-life care [58]. Conceptually, withholding refers to the discontinuation of a treatment that is deemed necessary for living, while withdrawal refers to the discontinuation of a life-sustaining treatment [59]. Though both concepts are used together in this context, withdrawal seems more appropriate at the end of life [60]. In the intensive care units in North America and Europe, life-sustaining treatment has some form of limitation, but end-of-life practices are highly variable [61].
The futility approach is not a new concept; its discussion in the medical and ethical literature began in the 1980s [62]. “Physicians have been advised by Hippocrates to
There is no mutually agreed definition for medical futility, as most definitions tackle the concept from different perspectives. One definition goes as follows: “a physician’s prognostic pronouncement that as a consequence of irretrievable illness or injury, further therapy will not improve the patient’s condition and, therefore, should not be attempted” [66]. Still, regardless of the circumstances, if the families are in a position to make decisions, they may demand the continuation of life-sustaining treatment, even if it may not be beneficial for the patient [67].
4.4 Examples
The relatives of a patient who receives end-of-life care may be emotionally overloaded, leaving them vulnerable to manipulation or driving them to manipulate the physicians. The most appropriate way to eliminate such manipulations from either party is medical ethical principles.
Patients and/or their families may be guided by a healthcare professional to seek a nonbeneficial, alternative treatment for an oncological disease that cannot be cured by modern medicine, and they may get false hopes regarding such treatments. They may even make catastrophic expenditures, using all their savings to seek such healthcare. This is quite a common example. Let us look at this example from the perspective of the four biomedical ethical principles. The patient and their families were not told the truth, and they were given incorrect information, which is against the principle of respect for autonomy and telling truth. The patient and their family were given false hope with methods that may harm them, which violates the principle of nonmaleficence and beneficence. The physician involved services that are not beneficial or evidence-based, which is against the principle of beneficence. Finally, the patient’s chance to spend quality time with their loved ones was taken away, causing them to make catastrophic expenditures, which violates the principle of futility and beneficence.
A male patient did not respond to non-opioid analgesics and had pain and severe weight loss. He was diagnosed with incurable pancreatic cancer and was receiving PC at the hospital center. The patient’s pain subsided after the opioid analgesic. The patient’s daughter was in tears, worried that her father would become an opioid addict, so she wanted the opioid analgesics to be discontinued for 1 month. She also wanted to know if metastatic cancer in his liver grew, and therefore she requested radiological examinations. Believing that the demands made by the patient’s daughter might be the patient’s last wishes, the physician discontinued the opioid analgesics and ordered radiological imaging. Let us look at this example from the perspective of the four biomedical ethical principles. The physician discontinued the medication and requested radiological examinations without asking the patient’s opinion, which violates the principle of respect for autonomy. The physician discontinued a drug that the patient was benefitting from, which is against the principle of beneficence. The physician caused more pain by discontinuing the drug, which violates the principle of nonmaleficence. Finally, the physician requested unnecessary radiological examination, which is against the principle of justice.
5. Conclusion
As a predecessor of bioethics and a branch of applied ethics, medical ethics was developed by physicians to regulate their interactions with their patients, colleagues, and society [68]. The patient-physician relationship is a unique interaction that is based on trust, dependency, and need, connecting the two [69]. This relationship is based on communication, ethical principles, and palliative care (PC); it differs from other clinics [3]. This is a stronger and more complex relationship that involves the PC team the patient, and the patient’s family before death and during their grieving after death [3].
Laying down a set of rules that society expects medical physicians to abide by, the Hippocratic oath is a social contract with ethical principles [70]. The principles of medical ethics are taught intensively during the first years of medical faculties, but not adequately addressed after graduation, though they could be more useful during professional life [71].
The inevitability of death is highly likely to exert intense emotional pressure on the PC team, the patient, and the patient’s families, including fear, hopelessness, despair, and anxiety. Dealing with this pressure appropriately is a part of good clinical management, but in doing so, ethical principles should not be compromised. Because they are not only a part of successful medical practice but a professional regulatory mechanism.
PC requires teamwork of doctors, nurses, physical therapists, clergy, and other essential health professionals [3]. Training the PC employees as a team both increases team communication and gives positive results in terms of patient safety [72]. Thus, the harm caused by communication to the patients and their families would be minimized.
The deaths witnessed by PC employees also affect their private lives [73]. Therefore, they must learn how to cope with the emotional burden of death and pain. Because they do a very special job, they should be trained on these issues. In this way, PC employees’ tremendous emotional burdens would not hinder them from following their ethical principles and logic. Because PC principles should not be broken under the impact of emotions, treatments that are not evidence-based and are not beneficial to the patient should not be applied, and symptom management should not be considered secondary.
It is important to keep in mind that violating one principle of medical ethics may lead to a violation of others. The resources used for an unnecessary treatment for a patient in the PC may have violated the principles of truth-telling, respect for autonomy, nonmaleficence, beneficence, justice benefit, harm, justice, and futility.
Knowing, accepting, and applying ethical principles, even in the most unpleasant situations, provides a peaceful working environment for all employees.
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