Ethics in Palliative Care

Abstract

The cases of ethical issues (new and unfamiliar daily circumstances) are increasing every day in palliative care services. The role of the codes of ethics is to help with these problems. The goal of end-of-life care for dying patients is to prevent or relieve suffering and respect the patient’s wishes and values. The benefits of ethical decision-making are relief of pain, improving the patient’s recovery, reducing the side effects of treatment, prevention of depression, and increasing quality of life. An essential component of the ethical decision-making processes may concern patients’ family members and society. However, physicians, healthcare teams, and nurses are facing difficulties in ethical challenges in end-of-life care. It should also protect the patient’s rights, dignity, beliefs, and religion. Healthcare professionals should understand the principles of ethics, ethical legal documents, advanced care planning, and ethical conflict to help patients make the best decision possible. The ethical principles guide healthcare professionals in the management of these situations and the problem they face in end of life care. In this chapter, we will cover the consideration regarding the ethical principles, ethical issues, ethical challenges, and dilemmas during the palliative care. The cases of ethical issues are increasing every day in the palliative care service.

1. Introduction

Palliative care (PC) alleviates the distressing symptoms in a terminal stage of diseases, avoids harm of intention, and improves the quality of life (QOL). The goal of PC should be to let the patients maintain their dignity and hope while they are alive [1]. The PC team should be knowledgeable enough to provide appropriate care, respect patients, rights, and avoid conflicts [2]. It involves a multi-disciplinary team that provides medical care, pain management, and emotional and spiritual support to a person and family members [3]. The QOL of life of a cancer patient has a direct connection with the professional and nonprofessional caregiver’s knowledge of supportive care and attitude toward end-of-life (EOL) care [4].

Many people at the EOL experience unnecessary difficulty and suffering [5]. Death is an inevitable part of life and death and should be peaceful, pain-free, and without any suffering [1]. Advanced medicine and modern technologies have both prolonged life expectancies and transformed the natural norms of death. Although, those new treatments and technologies do not cure chronic diseases. Medical interventions such as artificial nutrition and respiratory support can extend their life and provide secondary support [5].

The difficulties of ethical issues and moral solutions in palliative care services ethical principles recognized universally are autonomy, beneficence, non-maleficence, and justice [5]. A good understanding of medical ethics will contribute to the health professional’s decision-making and the daily practice of medicine for EOL patients [2].

2. Palliative care and related ethics

2.1 Ethics of palliative care and hospices

Worldwide only about 14% of people who need PC currently receive it, and each year an estimated 56.8 million people, including 25.7 million in the last year of life, require palliative care [6]. The goal of the PC is to improve the QOL for both the patient and their family members. Many people have difficulties and suffering at the end of life EOL experience. EOL helps with anxiety and distressful emotions, such as fear of the future and being a burden to loved ones. They worry about pain management and the loss of control over the quality of their lives [7].

WHO: “ PC is an improves the QOL of patient and family members facing the problems related with life-threatening illness, through the prevention and relief of suffering using of early identification and complete assessment and treatment of pain and other needs specially physical, psychosocial and spiritual” [8].

PC is a specialized medical care for people living with a serious illness [9]. Hospice and PC were established in the middle of the year 1900 and the founder who is Dame Cicely Saunders. She opened the first modern hospice (named St. Christopher Hospice-1965) and published a book about death (On Death and Dying-1969) [10].

PC improves the QOL of patients and their family members and most importantly is the reduction in symptoms of burden [11]. PC is explicitly recognized under the human right to health. It should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individuals [8]. Advancements in the development of medicine and technologies have both prolonged life expectancies and transformed the natural norms of death [5]. However, modern technologies and treatments do not cure chronic diseases, and medical intervention is providing secondary support such as artificial nutrition and respiratory support that can prolong lives [5, 12].

PC is specialized care provided to terminally ill patients by a multidisciplinary team. “Terminally ill” is defined as a patient who is affected by an incurable disease associated with a prognosis defined by an amount of months, days, or even hours of life. The multidisciplinary team is aimed to respect the dignity of human and improves their QOL, through pain control and relief of other symptoms.

PC is best for controlling the symptoms in these difficult situations [11] and focuses on the best quality of life for patients and family members [13]. Family members feel anger, blame, loss of hope, and weakness when they cannot relieve the suffering of their terminally ill loved one [14]. Terminally ill patients will have a hard time deciding because of sadness and stress [5]. The delivery of palliative services to patients and their loved ones should be managed in an ethical manner [6]. EOL is both a clinical and ethical challenge [15].

2.2 Ethics of healthcare team of palliative care

PC is provided by a specially trained team of doctors, nurses, and other specialists who work together with a patient’s serious illness. PC is comprehensive, also interdisciplinary services [16], and total care concentrates primarily on the comfort and support of patients and families who has a serious illness like cancer, heart failure, advanced lung disease, and neurodegenerative disorders [17]. The team’s palliative and supportive care is especially and serves them with holistic services including as emotional, spiritual, functional, and physical support. Healthcare professionals play crucial roles in the delivery of PC for cancer patients as they have to provide healthcare services with a positive attitude and also be prepared mentally [4].

Physicians and nurses face difficulties in their clinical practice of PC, and they need to understand ethical principles and standards well [2, 18] because health professionals need the right decision-making and the daily practice of medicine for terminally ill patients [19]. The PC experts and team members should carry out their responsibilities with honesty and dignity Palliative care, therefore, requires many different competencies, not only clinical but also relational, communicative, and ethical [20].

Essential skills needed for PC teams and clinicians who provide clinical care for EOL patients are education on medical ethics, understanding ethical principles, focusing on serious illness, learning about advanced care planning, ethics conflict, ethics committees, and specialist palliative care teams’ goals [21].

Nursing as a profession was created by society to meet specific perceived health needs [13]. Their daily ethical challenges influence those factors as spiritual beliefs, religious practice, and cultural norms of the patient. The patient’s culture like beliefs about disease treatment, and attitude affected their health and healing process [22].

The roles of the nurse are to work as a member of the interdisciplinary team so the patient/family can make fully informed decisions with full knowledge of the consequences of those options. In addition, PC nurses play a pivotal role in ethical issues.

Nurses are the most essential to the patients for ethical decision-making in PC because the nurses spend more time with patients and develop communication of intimacy and trust inherent in the nurse-patient relationship [14]. Andrew Jameton [23], a philosopher and author of nursing ethics, confidently states that “Nursing is the morally central health care profession”. Ethical leadership in nursing requires fundamental nursing values such as respect for patients, harmless, and justice.

According to the international code of ethics for nurses by the International Council of Nurses (ICN) [24], nurses are responsible for promoting health, preventing illness, restoring health, and to alleviate suffering. Professional code of ethics states “consistent with existing professional codes of ethics, conflicts of interest, scopes of practice, and standard of care for all relevant disciplines [21], and both codes state that nurses should provide respectful and equitable care to all individuals, families, and communities needing nursing care regardless of age, color, creed, culture, disability or illness, gender, sexual orientation, nationality, politics, race, or social status [25]. The ethics of PC often conflicts with clinicians, nurses, other healthcare team members, patients, and family members about what constitutes care, particularly as death approaches [26]. Healthcare organizations can work toward developing and implementing guidelines & policies for EOL care decision-making, especially policies for withholding or withdrawing the treatment options so as to avoid ethical dilemmas.

2.3 Palliative care patients

PC is available to anyone regardless of age as long as they have been diagnosed with an illness that causes suffering or is untreatable such as cancer, multiple chronic conditions as long as the patient or family members need or who want to relieve their suffering. In any setting where patients receive EOL care such as a home, palliative units, hospice units, PC clinics, and nursing homes. A professional team provides clinical care. However, primary health services are possible with a family physician, internist, geriatrician, cardiologist, pulmonologist, intensivist, and nurses [3].

PC offers physical, emotional, social, and functional support to people who need end-of-life care. PC teams and especially nurses face death and take care of people who are affected by death regardless of the terminal illness and settings where they work [27]. However, most Asian patients like to spend their valuable time at home and with their family members. PC patients have to follow principles for decision-making in their own life.

1. Every adult has the right to decide for themselves. People are assumed to have the mental capacity to make decisions until it is proven otherwise.

2. People should be given every possible help before they are declared to not have the mental capacity. This includes different forms of communication such as blinking, movement, and making noises.

3. If someone makes a decision that seems unwise or strange, it does not mean they lack the mental capacity, and they have the right to make these decisions.

4. Any decision made on behalf of someone who lacks the mental capacity has to be made in their ‘best interest”.

5. People who lack mental capacity should not have their basic rights and freedom restricted, and any decision made on their behalf should not interfere with their rights or freedom.

3. Ethical issues and palliative care

Common ethics issues in PC include the goal of care, advanced directives issues, patient and family goal conflicts, physician and patient goal conflicts, transitioning focus of care, pain and symptom management, and PC and hospice treatment [3]. Most stressful ethical and patient care issues were protecting patients’ rights, autonomy, and consent form to treatment, staffing patterns, and surrogate decision-making [28]. The staffing issues include physicians, nurses, teams, and volunteer [3]. The communication-related issues include the staff and patients/family members, physicians, patients, etc.

3.1 Ethics and moral attitudes palliative care profession

Moral philosophy is considered essential in moral issues, an important discussion about whether something is good or bad and right or wrong [14]. Ethics discipline is the study of the rational justification of moral principles and moral behavior [29]. Ethics is a process for making logical and consistent decisions based on social morality and philosophical reflection [14].

Both ethics issues and PC have always been a part of Medicine [11]. PC is a holistic approach, and ethical issues are an essential part of the principles of PC. The ethical principles and values in clinical practice refer to the importance of respecting all of a person’s values, needs, and wishes in the context of health care, and that is the benefit to the person with an advanced chronic or terminal condition [30]. The morality of PC recognizes the moral principles; moral dimension, communication; and moral dilemmas as individual conflicts [31].

3.2 Ethical principles of palliative care

The principle was originally proposed by Beauchamp and Childress [32]. They included autonomy in the principles, beneficence, and justice. An ethical principle include: Autonomy (an individual has the freedom to make their personal choices), Beneficence (to do together, sharing knowledge and listening they thought), Non-maleficence (without harm to people), and Justice (to encourage honesty and equality in individual). These “four principles” are common in Eastern and Western cultures, but their application and weight may differ [5].

Autonomy is careful about a patient’s right to independence. Everybody has the right to decide the differences of treatment they receive unless they are proven to be unable to. Patients’ autonomy should be respected and is one of the fundamental principles of medical ethics [33].

The beneficence requires the patient’s charge of choosing the needs and preferences of the patient’s treatment options and care. These should be regularly reviewed; recognized and acted upon so the patient can live as comfortably as long as possible with their inalienable human dignity always respected [5].

Non-maleficence is an obligation not to inflict harm intentionally [21]. Non-maleficence is the most important principle out of the four guiding principles of ethical decision-making.

Justice requires that those who are ill and all other people involved in their care families, careers, and even the wider community are treated fairly and that limited resources are used responsibly and wisely. Additionally, dignity (the patients and the persons have to respect their dignity) and truthfulness and honesty (the concept of informed consent and truth-telling) [2].

4. Ethical challenge in palliative care

Schofield et al. [34] analyzed a systematic review of the ethical challenges in PC practices. The researchers identified the daily practice of the ethical challenge, and the ethical issues and problems related to ethical principles, delivery of clinical care, working with family members, navigating societal values and expectations, and philosophy of PC.

“Decision-making” for EOL care has earned paramount importance as it has capability to prolong the human life with the support of medical technologies or can let the natural death process continue by foregoing the treatment option [35].

Many of these dilemmas are associated with decisions made concerning continuing, limiting, or withdrawing life-sustaining treatments [36]. The ethical dilemmas surrounding the provision of patient care include clinical decision-making. Honest communication about the diagnosis and prognosis of a fatal illness, which fully respects patients’ wishes and preferences, positively affects their QOL and improves symptom management [37].

4.1 Decision-making and ethical principles

Each principle relates to each of the other three principles; therefore, they should be ordered according to the criteria of priority for each case, with the ultimate aim of “the best interests of the patient”. The patient who is in the PC unit should make decision about his/her treatment and services. The patient’s ability of the person to choose and act for one’s self free of controlling influences such as coercion from physician, nurse, consultant, family members, and pressure from religious groups. Ability to make decisions based upon our personal values and wishes [3]. Autonomy was highly respected in EOL care and decision-making Nurses communicated major concerns in considering patients’ preferences, wishes, and promoting advance care planning [38]. Beneficence is acting in the best interest of the patients. That was the best-case scenario and worst-case scenario. In the best-case scenario, we help the patient understand what QOL is and respect their values. In the worst-case scenario, the nurse or person taking care of the patient treat the patient with paternalistic interactions and does not respect their beliefs and values [3]. Non-maleficence is an important requirement in morality and palliative care ethics (do not harm) [39] and make no knowing act or decision, or lack of information sharing which will cause direct harm to the patient [3].

Justice is considered an individual’s decision of what is better for the better of the patients and society. These decisions impact more than our own personal sphere and are responsible for the health status of the community [3].

4.2 Communication and decision-making

Issues of communication involve disclosure, confidentiality, informed consent, and decisional capacity. The most common reasons are conflicts in values between physician and patient or patient and his family [1]. The decision-making process presented has important elements such as the patients have to understand relevant information about his/her problem, respecting their choices, personal and patient’s benefit, and ability to reason and to deliberate about available choices [13]. A nurse is the key person in the decision-making process between physicians and patients or surrogates.

4.2.1 Disclosure includes

The patient’s present medical condition, likely course of treatment or what might happen if no treatment, if provided potential treatments will that may help the patient in prolonging their life or saving them as well as their risks and reduce unwanted burden. A professional opinion is suggested to patients on alternative treatments and recommendations based on the professional best clinical judgment [40].

4.2.2 Confidentiality

Sensitive personal information disclosed by a patient to their nurses is legally guarded by confidentiality, and should not be divulged and the necessary steps to ensure it should be taken [40]. The confidential information should be applied to non-autonomous and deceased patients as well. The only exception to this is if it is used to avoid harm in any way possible to either the patient or a third party [41].

4.2.3 Informed consent

When a patient goes to the health profession for a medical problem, the health profession is expected to make a diagnosis, inform them of all possible treatments and recommend one of them explaining the reason its pros and cons so they can make the most informed choice and express a preference for one of the suggested options given. The patient must understand the information, consider the treatment choices, and expresses a preference for one of the options planned by the physicians. This denotes the practical use of respect for the patient’s autonomy [40].

4.2.4 Decisional capacity

The patient can make their own decision unless proven that they cannot. The patient should be able to understand relevant information, the medical situation; possible risks communicate a choice even if it is as small as a nod or the shake of a head as well as engage in relation deliberation with their values in the recommended treatment [40]. The patients have a right to refuse to make a decision and refer the decision-making process to another person.

5. Ethics dilemmas in palliative care patients

5.1 Dilemmas of ethics

Ethical dilemmas on macro- and micro-levels emerge daily as the debate continues on extending life versus postponing death [20]. Changes in social/family systems have added to the complexity of EOL and PC [15]. Ethical dilemmas surface as those comparisons draw attention to the insufficiencies of practice. For an ethics standard to be meaningful, it must reflect a comprehensive approach that simultaneously allows for each individual’s particular needs. The extraordinary spectrum of requisites, from the most basic of physical care concerns to the broad issues of existential distress, reflects the daunting ethical responsibilities which are integral to PC. Ferrell’s QOL model, which identifies the essential components of physical, psychological, social, and spiritual well-being, is comprehensively reflected in the Five Principles of PC. These principles can serve as a “checklist” for any healthcare professional caring for persons at the EOL.

Ethical dilemmas emerge across the spectrum of care as nurses endeavor to provide the best possible physical and psychological care, communicate appropriately and honestly with the patient and families in making decisions to withhold or withdraw treatment, and respond to requests for interventions that may conflict with their value systems [42]. Medical professional obligations are confidentiality, advance directives, DNAR, euthanasia and PAS, research, patient competence, “right to die,” and power of attorney [41].

5.2 Advanced care planning

Advanced care planning (ACP) is a process that helps patients in any stage of health in understanding and share their values, life goals [43], and preferences and wishes regarding future treatments [44]. Substituted judgment refers to a guide for decision-making when a patient has difficulty decision-making and doctors, nurses, and family members try to make the decision that the patient would have made if his/her were able to make decisions [42]. ACP involves identifying a surrogate decision-maker to action if the patient is no longer able to make decisions about their care [45]. Surrogate decision-makers try to understand the patient’s beliefs and values on the patient’s behalf [21].

ACP is dependent on the patients’ health whether they have a mild, or moderate chronic illness or advanced life-threatening [29]. ACP should be integrated into routine care and should be discussed frequently and every time the patient’s condition changes [45].

The principle of the advanced care planning approach is commonly used for patients who are close to death to discuss with them about their future care and how they wish to be treated. However, these processes are not always been done, especially if; the patient is urgently admitted to the hospital or disagreement among family members about what is appropriate treatment [46].

Honoring Choices North Dakota (HCND) is defined as “Advance Directives are legal documents that allow patients to put their healthcare wishes in writing or to appoint someone they trust to make decisions for them if they become incapacitated” [21]. Types of advance directive names have Living will, personal directive, medical directive, advance decision, and mental health advance directive types of health care agent names are medical power of attorney (POA), health care power attorney, health care representative, health care surrogate, surrogate decision maker, and guardian and conservator [21].

5.3 Euthanasia and physician-assisted dying

Euthanasia on the conflicting can be both passive and active. Passive euthanasia mentions to hastening the death of an individual by taking away a form of support and agreeing for the patient to die naturally without support; active euthanasia is affecting the death of someone through direct action at an individual’s request. Proponents claim that the suffering, anguish, and pain of the patient and family could be more. Finally, the public, individuals, families, and healthcare providers need to openly and honestly discuss all aspects of this approach to disease management at the end of life [7]. As of 2022, euthanasia is legal in Belgium, Canada, Colombia, Luxembourg, the Netherlands, New Zealand, Spain, and several states of Australia (New South Wales, Queensland, South Australia, Tasmania, Victoria, and Western Australia) and seven states in the US (Wikipedia, 2022). PAD is an ethical argument regarding voluntary euthanasia and it is from a utilitarian perspective [47].

5.4 Death

Professor Alexander Fitzthum [48] recorded that death is classified into five groups, natural, accidental, suicidal, homicide, and unknown death. Natural death is an internal factor that causes the body to shut down (chronic diseases such as cancer, heart diseases, diabetics.) and an external factor such as traumatic injuries.

Many physicians, particularly those in the fields of oncology and PC, will be faced with a request for such assistance sometime in their professional lifetimes. In recent years, much of the developed world has seen the emergence of EOL debates and increasing pressures for the legalization of physician-assisted dying (PAD). It is challenging because of the inherent uncertainty of making predictions and because dying is not an easy topic to discuss [49].

Physician-assisted dying in utilitarian theory is considered ethically right as its decision is in the interest of the patient. Their family’s interest should not be included and they should only be allowed to give their opinion on the patient’s choice [9].

From the perspectives of patients, there is considerable debate regarding the ethical implications of physician-assisted dying; the patient’s self-determination rights, competence, beliefs, and values form the basis for these decisions [9]. The physician-assisted death is a more respectful and dignified way for terminally ill patients to die. Most people including physicians agree with physician-assisted death; however, there is a need for training, support, and implementation of physician-assisted death. Ethics committees may help fill this gap and provide resources and mediation of value conflicts [9].

6. Conclusion

The conclusion of this chapter is palliative care is to prevent or relieve suffering available while respecting end-of-life patients. Ethical issues in palliative care increasing day-to-day in clinical care due to modern therapy and technology, and it is making life expectancies to increase. Healthcare professionals face difficult ethical challenges in daily work. The most important part of professional ethic appears to be communication, decision-making process, consent form, and ethical conflicts. Healthcare professionals should understand ethical principles, bioethical codes, legal documents, and end-of-life care. These can be prevented from ethical conflicts and ethical problems.