Aktuálne etické dilemy v paliatívnej starostlivosti

title: Current Ethical Dilemmas in Palliative Care type: Article language: English published: 15 Nov 2013 updated: 15 Nov 2013 category: Zdravotníctvo author: doc. PhDr. Martina Mojtová, PhD source: https://www.prohuman.sk/zdravotnictvo/aktualne-eticke-dilemy-v-paliativnej-starostlivosti

We are born with the awareness that life is temporary. Fear of death intensifies with any serious illness and each of us fears it, regardless of age or profession. It is natural that we fear what we do not know and cannot stop. What we can do, however, is to be helpful to people for whom death is fundamentally at stake. We can help them overcome fear, improve their quality of life, and above all preserve their human dignity until the end. What do we mean by human dignity? It is an ethical category that emphasizes the value of the person and recognition of his or her rights in society. The bearer of human dignity is only the human being, who as the only living creature can think about herself and determine her own life. In legal terms, this concept is protected by the Charter, international agreements on human rights and fundamental freedoms, as well as other legal provisions. It is about protection against treatment that diminishes a person’s dignity as a human being (Hendrych, 2003).

The group of patients requiring palliative and hospice care increases every year. In Slovakia, oncology patients account for about 80% of all incurably ill and dying patients for whom palliative care is intended. Approximately 72% of oncology patients are over 65 years old, 26% are between 25–65 years, and 2% are under 24 years. Another 20% are patients with advanced cardiac, respiratory, and kidney diseases, Alzheimer's and Parkinson's disease, AIDS, and multiple sclerosis (Andrášiová, 2002).

Stages of dying

The well-known Swiss psychiatrist Elizabeth Kübler-Rossová (1992), in her work and conversations with dying patients, distinguished five stages capturing the period between diagnosis and death:

1. Shock, denial – rejecting reality, the established diagnosis, denial as psychological defense - Anger, rebellion, outrage – acceptance of diagnosis, fears turning into certainty - Bargaining, doubting – bargaining with fate, oscillation between hope and hopelessness - Depression, despair, hopelessness – the illness has progressed significantly, physical and psychological strength is lost - Acceptance, reconciliation – coming to terms with the illness and with death

The aim of the healthcare staff is to help the terminally ill person reach the stage of reconciliation.

Svatošová (1995, p. 35), from a time perspective, divides hospice care into three periods:

• pre-finem period

– care for the patient and his or her family from the moment a serious diagnosis is identified until the onset of a terminal state, - in-finem period

– care and accompaniment of the terminal patient and close ones during the terminal state, i.e., during dying, - post-finem period

– care for the deceased body and accompaniment of survivors as needed (including long-term), usually for one year.

Models of dying

For centuries, people mostly died at home, in the circle of their family, close ones, or friends. People died without any help, and according to Vorlíček (2004), we can consider the domestic dying model as a certain ideal norm.

With the establishment of modern hospitals, a new institutionalized model of care emerged. A gradual taboos around dying and death began; this is something that is no longer spoken about. In this model of dying, the required human contact is lacking; dying has lost its character as a social act. Family members visit and do not know how to behave toward a dying person, what to say, and assume that a professional is there to take care of the patient. The problem is that healthcare workers themselves also do not know how to behave in certain situations, what to say, how to respond. The very design of education for helping professions is not well calibrated; university graduates are not sufficiently prepared for their profession. They lack communication skills: they do not know how to deliver bad news (for example, a terminal diagnosis), how to act with a child patient, how to handle ethical dilemmas, and so on. That is precisely why errors and lapses occur in the approach to care for dying patients, because staff is not adequately prepared.

In current care of the dying, the biomedical model still predominates. As if something essential is leaking out of view—that a person is understood as a biopsychosocial being. The psychological, social, and spiritual component is an inseparable part of the whole, and this is what holistic care in hospices emphasizes. In the majority of cases and in the current situation in healthcare institutions, care for dying patients and their families is still insufficient.

Many authors note that until the end of the 1980s, little attention was paid to families caring for a dying loved one. In the late 20th century, more attention began to be paid to the burden of families in caring for a dying family member in home settings (Matthews, 2004, Meyers, 2001, Scott, 2001, Cohen, 2006, etc.). Authors also note that caring for a dying person places high demands on a family’s psyche; social relationships change, and questions of faith, religion, and the meaning of life are also increasingly addressed. As a promising approach, any system that combines the strengths of both the institutionalized and home models appears appropriate, while still respecting the taboo surrounding everything related to human finitude (Vorlíček, 2004).

We agree that the unmatched model is the hospice model. It is precisely the setting that combines home and institutional care with a holistic approach to patients in terminal stages (Fabuš, In Kasanová, 2009).

Palliative and hospice care

In the Concept of Healthcare in the field of palliative medicine including hospice care by the Ministry of Health of the Slovak Republic (MZ SR, 2006), palliative medicine is defined as “a specialist discipline that deals with the diagnosis and treatment of patients with chronic, incurable, advanced, and actively progressive diseases with limited life expectancy. The goal of palliative medicine is to maintain the highest possible quality of life of the patient up to death.” Palliative care is professional, holistic, interdisciplinary, and should be provided to all dying patients regardless of their diagnosis or type of healthcare facility. It is continuous care—from a general approach to a specialized discipline.

The task of palliative care is “to improve the quality of life of the patient until death, to alleviate suffering and stabilize the patient’s health status, to provide relief from pain and other severe disease symptoms, to ensure comprehensive treatment and care by a team of healthcare professionals with professional competence, neither to hasten nor postpone death, to integrate psychological and spiritual aspects of care, to provide a support system so that the patient can live as actively as possible until death, and to provide help to relatives and close persons in coping with difficulties during illness and after death during bereavement.”

The Ministry of Health of the Slovak Republic characterizes hospice care as “comprehensive intersectoral team-based care with an interdisciplinary approach, replacing exhausted causal treatment with the necessary symptomatic treatment. It comprises a sum of professional medical, nursing, pastoral, religious, psychological, and rehabilitation activities provided to terminally ill patients with the goal of minimizing pain and relieving all difficulties arising from the underlying disease and its complications while considering the biopsychospiritural needs of the patient and his or her family.”

The basic philosophy of hospice is grounded in respect for life and respect for the person as a unique and irreplaceable personality, including biological, psychological, social, and spiritual needs.

Any person may be admitted to a hospice regardless of age, gender, nationality, race, social status, or religious affiliation. The primary criterion is the patient’s clinical condition, namely a progressive disease threatening life, while hospitalization is not required and home treatment is not possible or not sufficient. Priority is given to incurably ill patients in the final stage of disease, that is, terminal patients. A patient is admitted to hospice upon his or her own request, the request of family, or at the referral of the attending physician. A written, voluntary, and informed patient consent is required. (Mojtová, 2008)

According to Vorlíček (2004, p. 511), a patient in hospice knows that he or she will not suffer unbearable pain, that dignity will be respected under all circumstances, and that in the final moments of life the person will not be alone. We distinguish several forms of hospice care:

• hospice care in the home environment (mobile hospice),
• hospice outpatient clinics,
• inpatient hospice care (hospice ward),
• bed-based hospice care.

Dignified dying is supported by strategies for developing palliative and hospice care in line with international documents addressing palliative and hospice care and their recommendations, which all countries should meet. These include, for example, the Charter on Patients’ Rights at the End of Life, recommendations of the European Association for Palliative Care, the Council of Ministers’ Recommendation on the Organization of Palliative Care, the European Social Charter, and others.

In some countries, instead of palliative or hospice care, the expression “care of the patient at end of life” (End of Life Care) is used, while “end of life” is understood as the period of one to two years during which the patient, family, and health and social workers progressively learn that the disease significantly limits the length of life. For example, in England in 2008, the document “NHS End of Life Care Strategy” was published, with the goal of improving dying for all patients regardless of diagnosis and care setting. End-of-life care for a patient may also be understood more specifically as comprehensive care for dying patients in the last hours or days of life (Radbruch, Payne, 2009).

The service system in palliative and hospice care in Slovakia

Although there is no comprehensive legislation in Slovakia regulating the provision of health and social care, these characteristics are found in certain core legal norms, whose provisions also include various areas of health–social interface, i.e., intersections of both helping professions. In the Slovak Republic there are three basic legal documents dealing with the provision of health and social care: Law No. 576/2004 Coll. on Health Care, on services related to the provision of health care and on the amendment of certain laws
Law No. 578/2004 Coll. on providers of health care, health professionals, professional organizations in healthcare, and amendments to certain laws
According to Law 578/2004, a hospice is a separate healthcare facility intended to provide palliative care, located in its own building. A hospice may include inpatient palliative care, a mobile hospice, a palliative medicine outpatient clinic, or other specialized medical outpatient clinics.
Law No. 448/2008 Coll. on Social Services and the amendment of the Law No. 455/1991 Coll. on Vocational Activity, as amended.

“To do good and avoid evil is the primum principium of all ethics. All ethical systems, including medical ethics, must begin with this rule, which means that good must be the focus and aim of any theory or professional activity that claims to be morally defensible.” (Pellegrino, 2001).

Ethical dilemmas and their systematic resolution

Sensitivity to violations of human rights and to injustice arising from unethical conduct is very high. It is therefore appropriate that in helping professions we can rely on ethical codes by which workers should behave and decide, not only in professional settings but also in personal life. In daily practice we face various ethical dilemmas. This is practically always when a person must decide on one solution when no option is optimal or ideal. Many confuse ethical problems and ethical dilemmas. There is, however, a fundamental difference between them. An ethical dilemma must meet three conditions:

1. there must be different possible courses of action from which an individual can choose one,
2. a decision must have to be made as to which direction is best in the given situation (situations that are unpleasant but do not require a choice are not ethical dilemmas),
3. in every case, there is a failure to fully uphold an ethical principle; that is, there is no ideal solution.

According to Kutnohorská (2007), a dilemma can be compared to an intersection or crossroads whose directions do not lead to the desired destination.

Social workers can encounter a wide range of ethical dilemmas as a result of their diverse and sometimes incompatible duties to clients, employers, colleagues, the profession, and society as a whole (Reamer, 1998). Dilemmatic situations can closely relate to conflicts of interest.

In dilemmas, decisions are made with great difficulty. Although some dilemmas may show some similarity, in many aspects they are unique and unrepeatable (different people, environment, organization, etc.). For this reason, it is not possible to offer social workers an exact manual for resolving dilemmas. The key lies primarily in the social worker’s own person, in his or her personality, experience, and knowledge (Mátel, 2012).

American professor of social work and ethics specialist Frederic G. Reamer (2006, p. 73) proposed a systematic process that can help when social workers enter a dilemma or problematic situation and must decide:

1. Identification of the ethical issue or dilemma, including social work values and duties that have come into conflict.
2. Identification of the individuals, groups, or organizations that the ethical decision is likely to affect. Multiple persons may be affected simultaneously.
3. Preliminary identification of all feasible courses of action and consequences for all participants, including potential benefits and risks for each. This is a kind of initial “brainstorming” that helps reveal multiple solution options.
4. Thorough examination of the reasons for advantages and disadvantages of each solution variant with regard to: a) the ethical code and current legislation;
   In light of internationally accepted principles of social work ethics (IFSW/IASSW, 2004), the value and dignity of all people are emphasized, including protection of their physical and psychological integrity. On the other hand, the Slovak code and international ethical principles also emphasize confidentiality of information. b) ethical theories, principles, and guidelines; c) practical theories and principles of social work. In this process, distinguishing practical aspects of the case from ethical reflection is helpful; d) personal values (including religion, culture, ethical values, and political ideas), especially those that come into conflict.
5. Consultation with colleagues and relevant experts (organization staff, supervisors, legal representatives, and ethics experts). Usually social workers need not decide alone without consultation; they can involve other professionals. Consultation can also help protect workers themselves in cases of accusations regarding the consequences of their decision.
6. Making a decision and documenting the full decision-making process. Through this systematic preparation, it is often clarified which solution direction brings more benefit and less harm.
7. Monitoring, evaluating, and documenting the decision. Making an ethical decision does not end the process, because consequences follow. The social worker must be ready to justify the decision to the client, the employer (organizational leadership), colleagues, and competent authorities. Thorough documentation is also important for possible complaints, abuse-of-authority allegations, or court proceedings.

Ethical principles and their application in care for dying patients

The patient’s right to information is clearly defined, yet in practice problems still occur, mainly because the patient has no medical education and does not understand many of the details. The law formulates the right to information as “appropriate information.” The fundamental ethical rule in this case is primum non nocere (first, do no harm).

From experience we know that communication with terminally ill and dying people is exceptionally complex and demanding. In the past, the strategy of benevolent deception (pia fraus) or “truth in small doses” was used primarily. At present, there is a shift toward truthful information. In practice, however, a tendency still persists to conceal the truth from patients about their illness (with the argument that the patient could not “cope” with it ... and what about the unprepared attending staff?). It is nevertheless a sad reality that every incurably ill, i.e., dying patient, knows they are dying. They feel weaker, doing worse than a week or month earlier, have greater pain, and have undergone surgery, chemotherapy, radiotherapy, hospitalization on oncology wards, and so on. Here the problem becomes loss of trust and the possibility of open, honest communication. All dying patients, including children, need this.

Being well informed is very important because only then can a patient who passes through the stages of dying reach acceptance. In the past this was often the opposite: all family members knew everything while the patient knew nothing. For many, however, this uncertainty and ambiguity produce greater fear than knowing the truth and knowing where they stand. If the patient knows what is happening, they can make all necessary arrangements, such as sorting out interpersonal relationships—for example, mutual forgiveness with someone (a son, sister, etc.), adjusting inheritance matters, writing a will, and so on.

At the same time, this is a prerequisite for using the nursing process method, which assumes the patient’s active participation in decision-making processes. It must in no case cause loss of hope (even when cure is impossible), and yet excessive (false) hope is also harmful. Communication is demanding for both sides and cannot be generalized. It depends on current conditions, prior experience of the professional and the patient, and differing expectations. Great emphasis is placed especially on the way information is given.

Arguments for telling the truth

• The truth cannot be concealed.
• There must be a reason for benevolent deception (not merely unwillingness to tell the truth).
• Forensic (legal) consequences of concealment and non-disclosure.

Contraindications to full truth-telling (cautious forms of disclosure)

• The patient’s negative attitude.
• A prior psychotic episode.
• A psychiatric diagnosis.

The strategy of complete truth and benevolent deception is equal in principle, and the patient’s preference decides (however, the strategy of truthfulness clearly predominates today).

Every legally competent person has the right to make decisions about themselves and all matters related to health, i.e., at least a person 18 years or older and mentally competent. The same applies to informed consent. For non-competent persons (children, mentally ill people), informed consent is given by a legal representative (for children, usually parents). Even so, it still happens that healthcare professionals follow the child’s wishes rather than the parents’. It is known that terminally ill children are emotionally and cognitively more mature than their healthy peers. The reason is suffering, pain, much reflection on illness and life, and living in a hospital environment. A 15-year-old dying boy in an oncology ward, whose parents were willing to take him home and provide care through a pediatric mobile hospice, refused to leave the hospital. His reason was the parents’ hyperprotective care (“I could not breathe freely”). The parents insisted on bringing him home despite his resistance, arguing that he would be better at home, in familiar surroundings, and so on. A so-called ethical dilemma also arose here—on one side, respecting the law and thus the parents’ rights; on the other, the minor child who clearly knew what and why he wanted. The doctors decided to respect the boy’s wish. The parents eventually understood and accepted his wish, and allowed him to die in the hospital.

Another example concerns refusal of treatment. A patient, for example, does not want further surgery, is already exhausted and worn from many therapies and surgeries. He has accepted his approaching death and refuses any further resuscitation. Family members, however, forcefully want to keep their loved one alive and do not wish to reconcile with the loss. They insist that if the patient stops breathing, doctors must do everything to resuscitate him or her. Yet with each resuscitation the patient suffers physically and psychologically. What should doctors do?

Work in healthcare institutions has a multidisciplinary character, since the person-patient is understood as a biopsychosocial being. We can speak of mutual interconnection between health and social care. A social worker in healthcare has an indispensable role. Responsibilities differ according to type of facility, department, number of patients, etc. The social worker is responsible for clients, has access to health records, and must always protect the confidentiality of all information obtained about the client. Closely related is the fact that, beyond professional competencies gained through various forms of education, the social worker must also possess comprehensive personal competence (Mojtová, 2008).

In addition to professional knowledge and skills, especially helping professions working with terminally ill or dying patients should also have personal prerequisites with emphasis on respecting ethical principles (Mojtová, 2008). Core ethical principles include:

• Beneficence – acting for the maximum good of the individual person.
• Non-maleficence – requiring exclusion of any intentional or unintentional harm or injury.
• Autonomy – respecting the patient/client’s decision according to their own convictions.
• Justice – treating everyone fairly, with equal distribution of risks and benefits, making no distinctions between patients, and providing healthcare to everyone who needs it without discrimination.
• Veracity – telling the truth, not deceiving others.
• Fidelity – respecting the confidential nature of client information and actions.
• Understanding/tolerance – understanding and accepting other people’s views.
• Respect for the client – valuing others, their rights, and their responsibility.
• Transparency – acting on generally recognized ethical standards accepted by all stakeholders.
• Finality (finalitas–definitiveness) – acting in ways that may take precedence over requirements of law, religion, and social customs.

Ethical dilemmas of helping professionals in palliative care

Death is an inseparable part of life because every organism is destined for decline and death. In connection with this issue, ethical dilemmas arise as well. We may ask: “What ethical dilemmas do helping professionals encounter, and how do they cope with them in work with the dying?”

In general, ethical problems and dilemmas arise in three main areas (Nečasová, 2001): a) In the area concerning individual rights and quality of life— in our context, this area mainly deals with the relationship between the dying client and the helping professional. b) In the area concerning general welfare—here lies conflict between client and society, or between client and the organization where the helping professional is employed. c) In the area of inequality and structural oppression. Organizational rules can significantly affect work with clients and should certainly not be ignored.

According to Nečasová (2001), ethical problems arise in situations where it is obvious how a social worker should decide, but that decision conflicts personally with them.

In work with the dying, we may assume that ethical problems arise when the helping professional finds it difficult to decide whether to enter into or intervene in the life of a person and the person’s family.

We can divide dilemmas into (Musil, 2004):

• Manifest dilemmas – force workers into an immediate choice between two seemingly incompatible options from their perspective.
• Latent dilemmas – a dilemma that was initially manifest but over time recedes into the background, for example due to changing circumstances that make choice between the two poles harder. The dilemma does not disappear or become resolved; it only retreats into the background or workers learn to avoid it through rationalization.

Managing ethical dilemmas is very complicated. The first step is to identify the dilemma, determine values, duties, and rights, and clarify whose interests the solution will affect. In handling ethical dilemmas, workers are expected to take a dual approach: on one hand, to approach each individual case specifically according to the situation and specific needs; on the other hand, to follow employer instructions and established procedures and rules (Musil, Nečasová, 2008).

An ethical code is one option for dealing with ethical dilemmas. It should provide guidance and inspiration to its members and protect clients from abuse and neglect. We must not ignore that an ethical code does not provide a clear answer but is meant to be a guide helping to make decisions. Another option for handling ethical dilemmas is supervision, which helps in their management. A supervisor maintains a neutral stance, can bring an objective view of the situation, and can indicate possible solutions.

Specific dilemmas in work with the dying include:

• Euthanasia vs. dysthanasia – from a body of Dutch and other studies it follows that the reason for requesting euthanasia is usually suffering, pain, and therefore fear of pain, fear of the unknown, dying, loss of dignity, sense of lost meaning of life, abandonment, loneliness, and hopelessness. From our own experience we know that when these torments are relieved, physical and psychological distress becomes bearable, and for many this is a time of complete maturation and acceptance of the approaching end. Opposed to euthanasia is the problem of dysthanasia—the prolonging or delaying of death. In current times, dysthanasia is a reality due to modern medical technology and science. It makes it possible to keep a person alive with devices, but it prolongs the dying process and postpones natural death.
• Sharing information with the client or close ones – one of the most demanding tasks for healthcare workers is informing the client and family about health status, diagnosis, and prognosis. The main ethical principle is to provide information truthfully. In current practice, however, we still face the problem of how to provide this information, when, and to whom.
• Informed consent – for a client to be able to sign informed consent, there must also be a conversation between doctor and patient and the transmission of truthful information about health status. In practice, unfortunately, we also encounter cases where clients do not know their prognosis. A problem in this area can also be that the client has the right to refuse treatment.
• Boundary issues in the relationship to the client – one can divide this into, on the one hand, an informal relationship that makes trust-building easier, but where there is also greater risk that the client will manipulate the worker, and the worker may violate equal treatment principles; and, on the other hand, a formal/professional relationship, which can also be based on trust but helps the worker more easily remind shared rules of cooperation, goals, and plans.
• Dilemma of help and control – especially with passive, non-cooperative clients, where work on the problem may be interrupted or ended by the worker. The worker may also perceive ending support as failure.
• Dilemma of choice of intervention type – the tendency to intervene in issues for which the worker lacks qualification.
• Dilemmas arising from personal and professional qualities – dilemmas involving demands and one’s own safety, dilemmas arising from one’s own unresolved topics or personality orientation, etc.

Conclusion

Palliative care embodies principles that uphold the value of human life, its sacredness, and human dignity. Attitudes toward dying and death, toward quality of life can come from love for one’s neighbor, which is rooted in human dignity. Ethical dilemmas become visible when we face the decision of whether to apply palliative care or euthanasia, or dysthanasia. Palliative care does not view a fight at all costs as beneficial, but seeks to improve quality of life during the last days remaining to a dying person.

A person’s right to die and die with dignity is the foundation of ethical principles. Knowledge of ethical theories, ethical codes, and values does help helping professionals in situations where they must face ethical problems or dilemmas, but it is not sufficient on its own. Helping professionals must be able to bring these into their practice, both at the level of their own work with the dying and in terms of implementing ethical procedures at the organizational level.

Ethics in palliative and hospice care gains crucial importance in coordinating ethical attitudes and coexistence according to tested principles of common good, solidarity, and subsidiarity for all. The level of quality of services provided to dying patients is a criterion of each country’s moral development.

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