Psychological support of relatives of terminal patients.

INTRODUCTION

Terminal states represent the final stage of life, which is on the borderline between life and death. It is a transitional period culminating in biological death - an irreversible state in which the restoration of the organism's vital activity as a whole becomes impossible. These states can be the result of either a prolonged illness, an accident, or sudden organ failure. In some cases, resuscitative measures can help restore vital functions, but this is unfortunately not always true.
One way or another, every person in his life faces the death of loved ones, loss. The onset of death is always unexpected for the person's surroundings. The process of dying always raises a lot of questions about the meaning of life and the fear of death in those who remain and have to live with grief.
When a loved one develops a terminal condition, his or her family is faced with serious emotional and psychological distress. This crisis is multifaceted and is accompanied by a variety of experiences that can manifest themselves in different forms and stages. One of the first reactions is shock: relatives feel numb, confused and have difficulty realizing and accepting what is happening. Denial - a refusal to believe in the diagnosis or the inevitability of impending death - is common. In an effort to maintain hope, people often resort to searching for alternative methods of treatment, turn to spiritual practices or alternative medicine. In parallel, fear develops - before loss, the pain of a loved one, their own helplessness. The state of anxiety can become chronic and expressed in bodily manifestations such as sleep disorders, headaches, palpitations. In addition, relatives often fear loneliness and an uncertain future. At such times, relatives of patients need psychological support.
When faced with such conditions in the family can arise different affective experiences, because, regardless of the conditions of the occurrence of the terminal condition in a loved one, it is always a sudden process. Such sudden states confront the whole family system and each individual family member with a number of complexities and challenges, including psychological ones. Each family member experiences in his or her own way the deterioration of a loved one's condition in the last days and hours of his or her life.
In such situations, the work of psychological support falls on others, such as medical personnel, other family members, or a psychologist. It is impossible to prepare for such situations in advance, even if the diagnosis was known and the outcome determined. It is the surprise factor that makes the psychologist's work more difficult and requires more professionalism. This is a normal part of the phylogenetic experience of mankind, but the importance of encountering these processes for the human psyche can hardly be overestimated.
This paper outlines the psychological aspects that come to the forefront of the relatives and close environment when a family member's terminal conditions occur. And also possibilities and methods of psychological support in such acute moments of human life.
1.  Features and types of terminal conditions .
According to medical sources, there are several types of terminal conditions, each of which represents a critical violation of vital functions of the body and precedes biological death. In medical and clinical practice, the following main types of terminal states (stages of dying) are distinguished [4 c 18]:
Precomatose state (preconditioning). It is characterized by impaired consciousness, decreased blood pressure, rapid or shallow breathing. The patient may be lethargic, drowsy, or in a state of confusion. The autonomic functions of the body begin to fade gradually.
Terminal pause. A brief (a few seconds to a minute) state in which respiration and cardiac activity cease completely. Occurs before agony and may be reversible with immediate resuscitation.
Agony. Period of active struggle of the organism for life. Short-term mobilization of vital resources is possible (sometimes there is a "light interval" - temporary improvement of the condition). There is irregular breathing (Cheyne-Stokes type), pressure drop, marked disturbance of consciousness.
Clinical death. A condition in which there is no respiration and blood circulation, but brain cells still retain viability (within 4-6 minutes). During this period, it is possible to successfully carry out resuscitative measures.
Biological death. Irreversible cessation of all body functions. It occurs after clinical death if resuscitation has not been carried out or has not been successful. The main criterion is brain death.
Terminal states can occur as a result of various pathological processes, when the body approaches the border between life and death. This is a state of irreversible or almost irreversible extinction of the functions of vital organs. The cause may be cancer in the last stages with multiple metastases and exhaustion of the body (cachexia), failure of internal organs. Severe trauma with massive blood loss or multiple injuries to internal organs. Also among the causes are infarcts and strokes, acute respiratory failure, acute and chronic heart failure, renal and hepatic failure, diabetes mellitus (in a complicated form), neurological and degenerative diseases (ALS, multiple sclerosis, Alzheimer's disease in its final stages) and sepsis (systemic infection).
2. Peculiarities of psychological state and reactions in relatives of the terminal patient.
As already mentioned, a terminal condition is a sudden onset process, even if it is the end of a long chronic or acute illness. Thus, when a loved one has a terminal condition, their relatives experience a profound emotional and psychological crisis. Interactions with medical personnel may leave relatives in the dark, in particular there may be a lack of awareness that the relative is dying. There may also be a lack of specific information about the condition and prognosis, and false hope may be instilled [8 p 58].
Such circumstances can create conditions for strong emotional experiences, as well as complicate the work of grief after the loss of a loved one. Among the many affective experiences, the following can be emphasized:
Shock and denial. The primary reaction is emotional numbness, confusion, and difficulty accepting what is happening. Relatives may refuse to believe in the reality of the diagnosis or the inevitability of death. Often there are attempts to seek alternative treatment, turn to alternative medicine, religion. Even if the hopelessness of the existing somatic disease was known to them in advance.
Fear and anxiety. Fear of loss, suffering of a loved one and their own powerlessness. Anxiety can be constant and expressed in physical symptoms: palpitations, sleep disturbances, headaches. There may also be a fear of not understanding the dying process. Especially in the presence of various symptoms that accompany the last days or hours of the patient's life, such as wheezing, inability to eat/drink, impaired excretory function, pain symptoms.
Guilt. Often relatives blame themselves for "not having enough time", "not caring enough", "doing something wrong". There may be an irrational feeling that they could have changed the course of events. Especially this can manifest itself when doctors refuse resuscitation measures, due to their inexpediency.
Anger and irritability. Emotions can be directed at doctors, other relatives, the patient himself, God, fate. Anger often covers up fear, pain, and powerlessness, and is a way of "throwing off" tension. It may be expressed as a search for culprits [1 c 27].
Depressive reactions. Fatigue, apathy, loss of interest in daily life. Sleep and appetite disorders, decreased motivation, a sense of hopelessness.
A sense of loss already in the dying process. This is called anticipatory grief - the process begins before death. Relatives are already mentally saying goodbye, living through the pain, although the person is still physically alive. Thoughts about the meaning of life, faith, values may appear [12].
The need for meaning and hope. Even in the most difficult situations, relatives often seek comfort and meaning. Hope can be transformed - from "recovery" to "relief of suffering", "a dignified death", "an opportunity to say goodbye".
Need for support. At this moment relatives especially need understanding, acceptance, sympathy. Support can be professional (psychologist, psychotherapist), or come from loved ones, clergy, support groups.
In terminal states resulting from prolonged severe illness may also be present:
Psychological burnout. Long-term caregivers may experience emotional and physical exhaustion, especially if care is provided at home. Irritability, apathy, reduced empathy (the effect of "shutting down feelings"), a sense of "losing oneself", and loss of faith appear.
Disturbances in the family system. The terminal illness of a family member affects the entire family system, as old conflicts may intensify, tension between relatives over medical and domestic issues increases, children may suffer from lack of attention.
Fantasies/desire for death. The physical and moral suffering of a seriously and hopelessly ill relative may be accompanied by fantasies or even wishes for a speedy release from suffering. This can be an aggravating factor for the ability of the psyche to withstand the sudden terminal condition of the patient, and complicate the subsequent work of grief to increase the sense of guilt. [10 c 258].
Thus it is necessary to take into account the history of the duration of the disease or the unexpectedness of its onset.
3.  Theoretical bases of rendering psychological support to relatives of patients in terminal states.
There are many theoretical models that study and describe the mental state of a person in the face of death. However, in this paper we will focus only on some theories that equally define the process of living through the experience of death both for the patients themselves and for their relatives.
3.1.  The key ideas of Freud Z. in the context of grief and its normal and pathological living.
In Grief and Melancholy (1917), Freud argues that the grief reaction occurs in response to the loss of a significant object (person, idea, state). Unlike melancholia (depression), grief is a healthy and passing process that, while suffering, is not pathological.
The process can become pathological, however, when the libido is directed toward the lost object and all other external objects lose their significance. This can be characterized by apathy, melancholy, lack of interaction with the outside world, loss of importance of self-care. Freud says that in such cases the principle of reality loses, because the lost object is not lost at all, but continues to exist in psychic reality.
In the initial stages of grief, a person may deny the loss and displace pain and grief. These protective reactions are a natural attempt of the psyche to maintain stability, especially in the case of an abrupt loss (for example, when a loved one dies of a terminal illness). And after "grief work," the person becomes free of these experiences again and can move forward.
Freud emphasizes that it is not necessary to "cure" grief, but to give an opportunity to live it. This is confirmed by modern psychological practice, which has shown that it is important to allow relatives to feel, talk, cry, get angry without suppressing these emotions. [9 с 172].
3.2. Elisabeth Kübler-Ross's model of the five stages of grief.
In the theory conceptualizing the subject's relationship with death and death processes the most famous is the model of five stages of grief proposed by the Swiss-American psychiatrist Elisabeth Kübler-Ross in the book "On Death and Dying" (1969). This model describes a person's emotional reactions to the news of terminal illness or loss of a loved one and includes the following stages:
1.  Denial - refusal to accept the reality of what is happening.
2.  Anger - a sense of injustice and irritation, looking for someone to blame.
3.  Bargaining - trying to negotiate or find a compromise.
4.  Depression - deep sadness and realization of inevitability.
5.  Acceptance - humility and willingness to face the future.
Although this model was originally developed to describe the reactions of the patients themselves, it also applies to the experiences of their relatives. However, it is worth noting that Kübler-Ross emphasized that these stages do not necessarily follow a strict order and may manifest themselves differently in different people [6].
Thus we can say that losing a loved one and grieving is a normal process. But this process creates a lot of psychological difficulties for the subject faced with these events and experiences. It is necessary to take into account the peculiarities and possible difficulties that may arise when working psychological support with relatives of people in a terminal condition.
4.  Negative factors and strategies when working with relatives of terminal patients.
4.1. Negative factors when providing psychological support.
There are a number of factors that make it difficult to provide psychological support to relatives of terminal patients. They can be related both to external circumstances (health care system, resources) and to the internal state of relatives or specialists themselves. We can distinguish the following groups of factors that should be taken into account when providing psychological support:
Subjective experiences of relatives faced with the terminal condition of a loved one such as:
- denial of the disease expressed in unwillingness to recognize the seriousness of the patient's condition, hoping for a miracle.
- emotional burnout resulting from long-term stress, powerlessness, exhaustion due to caring for a sick relative and constant tension.
- feelings of guilt and shame may appear as phrases "I am not doing enough", "I am angry at the sick person - this is bad".
- anxiety before death, expressed as fear of loss, unwillingness to discuss the end of life.
- silence in the family, e.g., taboo on talking about death, avoidance of open discussion of feelings.
Systemic and organizational barriers:
- Absence or shortage of specialists: psychologists, psychotherapists in palliative care institutions.
- Low awareness of available support. Relatives may not know where to turn for help and support.
- Untrained medical staff. Clinicians are often focused on physical care and do not know how to support psychologically.
- Overburdened health care system. With time and resource constraints, psychological support takes a back seat.
Communication difficulties may be observed:
- broken communication with staff, lack of trust, understatement, misunderstanding of what is happening.
- Difficulty in expressing feelings because relatives may be afraid of appearing weak or intrusive.
- Inability of the specialist to establish contact, especially in short-term hospitalization or in difficult emotional situations.
Cultural and social factors become important for the possibility of psychological support:
- Social stereotypes such as "one should hold on", "suffering purifies", "death is a taboo topic", superstitions.
- Religious attitudes can both help and hinder comprehension of what is happening.
- Low level of psychological literacy and lack of understanding why psychological support is needed and how it works [3 p 25].
4.2. Directions and strategies of psychological support when working with relatives of terminal patients.
In work with relatives of terminal patients it is important to take into account the peculiarities of what is happening, because what happens at the moment of onset of a terminal condition in a loved one we can call a crisis moment. Here there is no possibility of long-term elaboration and there is no need to find deep problems of personality, help is needed here and now. Here are the main areas to be emphasized:
Emotional support and normalization of experiences. It is important to acknowledge and validate feelings and experiences such as grief, anxiety, anger, helplessness. The emotions associated with bereavement can be extremely intense and it is important to help them accept their feelings as a natural part of the grieving process. The use of active listening, which allows people to feel that their experiences are important and worth listening to, will be helpful in this context.
Preventing burnout. Relatives often find themselves emotionally and physically exhausted, especially if they are providing ongoing care for the patient. It is important to discuss and support their ability to take care of themselves and help them find time to rest and recover. Stress management and relaxation techniques may be helpful, as well as reminders to get involved in support groups or participate in a social setting.
Assist in accepting the inevitability of loss. Working with the concept of death and grieving is important on multiple levels: psychological, emotional, and cognitive. Relatives may experience intense fear of the death of a loved one or unpreparedness for the loss. A therapist can help understand and accept the inevitability, which can help reduce feelings of anxiety and worry. It is important to help relatives deal with conflicts and unresolved issues that may arise during the patient's final moments.
Family dynamics and shared bereavement. Exploring family relationships and dynamics is also important. Talking about how the illness affects their mutual relationships can be part of therapy. Relatives may have different reactions to the situation and it is important to keep them communicating to avoid tensions or misunderstandings. It is important to take into account the family's cultural background, traditions and values to offer support that is appropriate to their outlook and experiences.
Working together. Experiencing and sharing experiences together can help reduce feelings of loneliness and isolation.
Working with grief and preparing to say goodbye. Relatives often need to be supported in the process of saying goodbye to a loved one. Programs aimed at helping them decide on a final goodbye and prepare for the patient's death may include discussions about unfinished business, forgiveness, and ending the relationship. Helping relatives process the dying and grieving process is important through open, honest conversations about the death, using meditation or other techniques to alleviate stress and anxiety.
Focus on strengths and resources. It is important to focus on the strengths that relatives have and support them in finding personal resources to cope with difficult situations. Support through confidence in their ability to cope can give a sense of control and strength to carry on [3 p 51].
5.  Counseling and psychological support techniques when working with relatives of terminal patients.
5.1.  Coping Strategies.
Coping strategies (or coping strategies) are ways in which a person tries to cope with internal or external stress. In the case of relatives of terminally ill patients, coping strategies play a critical role, because they determine how a person endures a difficult situation, accepts the inevitability of loss and maintains psycho-emotional health [5 p 186].
1. Emotionally focused coping strategies are aimed at easing emotional tension:
- Expressing emotions (crying, talking to loved ones);
- Seeking support (from family, friends, medical professionals, priests);
- Spiritual practices (prayer, meditation, rituals).
Suitable in situations where it is impossible to change external circumstances - for example, when the disease is incurable.
2. Problem-oriented coping strategies are task-oriented:
- Learning information about the illness and care;
- Organizing a care regimen;
- Seeking legal and social assistance;
- Relying on protocols and rituals;
These strategies give the relative a sense of control and involvement, especially in the early stages of the illness.
In addition to the constructive coping strategies mentioned above, it is important to identify dysfunctional ones that may hinder the
3. Dysfunctional (ineffective) coping strategies may temporarily reduce anxiety in the short term, but in the long term they increase stress and worsen psycho-emotional well-being.
- Isolation and topic avoidance;
- Denial (hoping the diagnosis is wrong);
- Aggression toward staff or other family members;
- Abuse of alcohol, medications.
5.2.  Containment
One of the key concepts in psychotherapy, especially in the psychoanalytic and psychodynamic tradition, and it is very important when working with relatives of terminal patients. Containment is a process in which one person (e.g., a therapist or other significant adult) emotionally accepts, "accommodates," and processes the difficult feelings of another person, helping that person to cope with those feelings, make sense of them, and reduce anxiety.
The concept was first introduced by Wilfred Bion, an English psychoanalyst. He described how the mother "containers" the infant's fears and anxieties, helping the infant to cope with them, returning them in a processed form - the same thing a therapist does with a patient or relative.
When faced with a loved one's severe diagnosis, especially in the terminal stage, a person may experience a chaos of feelings: fear, powerlessness, guilt, anger, anger, panic, even envy of the "healthy." These emotions can be frightening and unbearable.
The task of the psychologist, doctor, or even another family member is to act as a "container." That is, not to reject the feelings ("don't cry", "hold on", "don't be sad"), but to accept and reflect them ("you are scared...", "you feel alone..."). Make it clear that these feelings are normal and acceptable and help to make sense of what is happening and find language for grief.
The psychologist listens to the relative without immediately trying to "calm" him/her down, but helps to express and name what he/she is feeling. The relative himself begins to containerize the feelings of another family member (e.g., a child), helping him to understand what is happening to the family member [2 c 16].
5.3.  Crisis counseling
Crisis counseling is one of the main and prompt methods of psychological support in palliative care settings.
Relatives of terminal patients often find themselves in an acute psychological crisis. This state can be caused by:
- sudden recognition of the diagnosis or prognosis;
- fear of losing a loved one;
- an abrupt change in life roles (e.g., becoming the primary caregiver);
- internal conflict: "I want to save" but realize it is impossible;
- the need to make difficult decisions (e.g., stopping treatment).
The goals of crisis counseling in this context can be distinguished as follows: to support in a state of acute stress, to help orient in a new, frightening reality, to reduce anxiety and panic, to find support in oneself or in the environment, to activate adaptive resources - even temporarily.
Methods and principles that apply:
Acceptance and empathy (no judgment, no pressure, no "reassurance at all costs").
Focus on the "here and now" - do not go into distant theories, but help to survive in the present moment.
Normalization of experiences - explaining that shock, anger, guilt and powerlessness are normal reactions.
Time reduction and structured - most often 1-3 meetings (but can be repeated).
Working with feelings of loss of control - to bring back a sense of having at least minimal influence over the situation.
Crisis counseling can be used as the first psychological help for relatives on the verge of an emotional breakdown or loss of meaning. It is especially important that such interventions are available at an early stage - immediately after diagnosis or at the moment of deterioration of the patient's condition. [11 c 112]
5.4.  Existential therapy
Existential psychotherapy is one of the deepest and most subtle forms of help for relatives of terminal patients. It works at the level of meaning, freedom, responsibility and fear of death, which is critical in situations where a person faces the inevitable loss and finality of life. In palliative practice, the existential approach is often used in psychological support not only for patients, but also for their loved ones. There is a direction of existential-humanistic grief therapy applied in case of loss and anticipatory grief. It is especially effective in individual and group work in hospices, palliative care centers.
Relatives of terminally ill patients often find themselves facing an existential crisis - one in which they question:
- "What's the point of all this if the end is inevitable anyway?"
- "How do I live when I lose my closest loved one?"
- "Why him/her?"
- "How can I be there for him/her when I'm powerless?"
- "Who am I now if my meaning of life is going away?"
The main themes that existential psychotherapy works with:
1.  Fear of death (including the death of another, not one's own).
2.  Isolation - feeling that no one understands the depth of pain.
3.  Loss of meaning - when habitual reference points and roles collapse.
4.  Responsibility - how to be there, how to act without betraying oneself and the patient.
5.  Freedom and choice - even in the situation of inevitable end, a person has freedom to react, to love, to care.
Existential therapy does not "cure" but accompanies in the process of personal meaning-making. It helps to face fear, not to avoid it. Teaches how to be present, alive and authentic in the moment. Supports the ability to love and give, even knowing that loss lies ahead [7 c 670].

CONCLUSION

The issue of psychological support for relatives of terminally ill patients is not considered as a separate discipline in a strict sense. This issue is part of psychological support in palliative care, and in the literature is often seen as mirroring or incidental to the care of the dying patients themselves. But as we have seen when faced with the terminal condition of a loved one, psychological support is required. There is not always a qualified psychologist around who knows how to provide this support.
Terminal states, as we have seen, are states that come on suddenly and precede the onset of death of the patient. They are sudden severe states when the patient is still alive, but there is little hope of recovery.
Relying on general psychological and psychoanalytical theoretical foundations, we were able to reveal that the terminal state in a loved one, causes in relatives a lot of emotions and actualizes psychological problems associated with anger, living premature grief. Can complicate the work of grief, which invariably must occur after the acute phase of grieving.
Those who have the role of providing psychological support in such cases may encounter complexities that may hinder the provision of support, such as relatives' personalities, their actualized family conflicts, emotional burnout, and individual beliefs and perceptions about dying.
It is important to note that psychological support in such cases cannot take the form of long-term therapy, because the terminal condition and the suddenness of its appearance relates more to a crisis, acute situation. Therefore, the choice of techniques for the work of a specialist should be made with these features in mind.
In the process of rendering psychological support there may be difficulties in connection with personal and family features of a person who has faced the terminal condition of a close person. Such features as inability to talk about their feelings, individual beliefs and superstitions about dying and death, actualized conflicts in the family. Thus, the work of a psychologist should be aimed at validation of experiences, work with the fear of death and guilt.
In work with relatives of patients there are several techniques that can be useful not only at the moment of experience, but also to lay the foundation for the normal work of grief. Coping strategy techniques can be helpful. An important part of the work will be to identify destructive coping strategies that may help in the moment, but will complicate the situation in the future. As well as building new, more constructive ones such as emotionally and problem-oriented coping strategies.
Undoubtedly useful in such cases is crisis counseling, which is aimed at validation of experiences, focusing on the present moment, searching for an opportunity to gain control over the situation.
The possibility to containerize the experiences of relatives who have encountered the terminal condition of a loved one can be of no small importance for the work of a specialist; often the opportunity to be heard by a person who is able to withstand the flow of emotions and cope with it may already be enough to reduce the degree of anxiety and psychological distress.
Existential humanistic grief therapy can also help to deal with the existential questions that are invariably present wherever a person is faced with the death of a loved one. Questions that have no answers, often in the aftermath of the loss, and especially in such moments of crisis. Such therapy can help in working with the fear of death, responsibility, choice, without trying to cure, but accompanying in the process of experiencing.
The methods and concepts described in this paper are only the first stage, which can significantly help to cope with the experience in the moment of acute situation, but also to facilitate the subsequent inevitable grief after the loss of a loved one.