Health-social versus social-health care for the dying client

Health-social versus social-health care for dying patients Dying and death belong to life and are part of it. No one should die without their loved ones, be it relatives or health and social workers. The dying need the healthy, and the healthy need the dying again so that they do not lose their disproportionate fear of death and can live a better quality of life. Palliative and hospice care is still one of the slow-developing areas in Slovakia and one of the still underestimated areas of interest for educational institutions, the government, organizations, but also for the people themselves. At the same time, the range of patients requiring palliative and hospice care is increasing every year. Cancer patients account for up to 80% of all serious diseases. In total, the target group for the field of palliative care in Slovakia consists of at least 12,000 patients per year, of which up to 9,000 need palliative care at the end of life. This group of people dies in unnecessary physical and psychological suffering (Andrášiová, 2002).

In relation to dying and death, we tried to point out some connections in the provision of health and social care and the possibility of help in solving them through health and social workers. The work points to several phenomena related to the issue of health-social versus social-health care for the dying client and contains suggestions for solving problematic areas related to the given phenomenon in the context of social work, health care, education and research.

Palliative care is professional, holistic and interdisciplinary and should be provided to all dying patients regardless of diagnosis or type of medical facility. It is a continuum of care – from a general approach to a specialized discipline (O'Connor, 2005). The goal of palliative medicine is to achieve the best possible quality of life for patients and their families. So it is not the extension of life, but the quality of life.

The philosophy of palliative and hospice care is to satisfy the physical, emotional, spiritual and informational needs of people in the terminal stage or in a life-threatening illness of the dying person and his family (Bommel, 1999). A hospice patient knows that: he will not suffer unbearable pain, his dignity will be respected in all circumstances and he will not be left alone in the last moments of his life.

The concept of palliative medicine is based on three pillars, namely the philosophical belief that death is a part of life, the ethical dimension – unconditional respect for the human being as a unique and complex being, and practical care for physical comfort and psychological support in the form of listening to the patient (Pichaud, Thareauová, 1998).

Hospice care for the patient begins even before he is admitted to the hospice bed. The patient must know that he will continue with palliative treatment and not causal treatment. Hospice care is palliative care provided to dying patients by the hospice, as well as by the medical facility itself.

Working in a hospice environment requires a high degree of expertise, independence, mental and physical resilience, a deep level of empathy and tolerance from doctors, nurses and other workers. The nursing staff is in contact with the patient and his family throughout his stay and also at the time of his death. It is precisely these borderline situations that are quite stressful for the nursing staff, and without the mentioned qualities and abilities it would not be possible to do this job well (Kasanová, 2009b).

Multidisciplinary team

Dying is a phenomenon containing biological, social, psychological and spiritual domains. This fact is the starting point for the existence of a multidisciplinary team that participates in the treatment of the dying. The highest quality is the form of care for the dying in hospices and palliative care departments. The work of the multidisciplinary team is based on a holistic (holistic) perception of a person, especially in the last part of their life, taking into account their bio-psycho-socio-spiritual needs.

Health care is provided by health professionals who take care of the patient from a biological point of view, i.e. his body, comfort, provision of food, getting rid of waste from his own metabolism, supply of oxygen, sleep. Furthermore, there are needs that are provided by professional medical care, such as radiation, chemotherapy, hormonal treatment (Balogová, 2005).

Hospice doctors and nurses are experts who specialize in treating the physical ailments of the terminally ill. It concerns the treatment of pain, shortness of breath, cough, vomiting, diarrhea and constipation, bedsores, infections and the like (Jasenková, 2005).

Social care is provided by psychologists and social workers. The task of the social worker is to familiarize himself with the patient's social situation, according to which he then proposes a reduction or complete waiver of payment for a stay in a hospice facility. The social worker also establishes a social diagnosis and carries out social therapy (Dobríková-Porubčanová, 2005).

The role of the social worker is therefore primarily to find out with the patient what to do, what are his other options given his physical condition, what will happen to him after he is released from the hospital, what society can offer him and what he himself can offer to overcome his unfavorable situation.

Haburajová-Ilavská (2007) says that the need for educated and erudite social workers working in the field of palliative care is growing due to constantly improving medical technologies, the growing number of chronic diseases, the increasing proportion of elderly fellow citizens and, last but not least, the increasing life expectancy.

Communication in palliative medicine

Communication with the family of a terminally ill person is a very difficult task for social and health workers. They are put in a position where the dying patient and his family members want to learn as much information as possible, and only the doctor has the competence to do so. The role of other workers is to support the family in the dying process, to listen, to be involved in the care of the client and to express compassion.

Free and open communication brings not only relief, but also clarity in matters and should be part of the work of all health and social workers in facilities where they meet people who are seriously and hopelessly ill. A relationship is created and maintained through communication, which can be both verbal and non-verbal. Without talking to other people, truer self-knowledge is not possible or coping with such a demanding job as caring for dying people (Vymětal, 1999).

Supervision and feedback alone are not enough for a health or social worker to be an expert in communication skills. Discipline and self-reflection are also necessary, the practice of which is often lacking in the education of nurses, doctors and social workers. Training knowledge in communication is not enough to bring about a permanent change in behavior. The worker must want to change, must be motivated to change and must be supported in it.

When providing information, the patient must be respected and if he does not wish to know the truth, we do not impose it on him. It is not appropriate to use the word cancer, associated in public with incurability, decomposition, with painful and painful dying. However, the patient has the right to know the truth, and an informed person cooperates better and more reliably. We inform carefully with regard to psychological possibilities, guided by the principle "primum non nocere" (Šoltés, 2008).

Mojtová (2010) states that the patient's information is very important, because this is the only way a patient going through the individual stages of dying can reach acceptance. It is important to emphasize the way information is communicated.

Ethics in palliative medicine

When making decisions at the end of life, it is necessary to address ethical issues. Issues of dying and death are linked to personal values and views on suffering and the meaning of death. Palliative care strives to ensure well-being and quality of life and emphasizes that the patient determines the direction of care himself. In striving to achieve comfort and quality of life through patient-centered care, there are often differences of opinion about what is best for the patient. This mainly concerns the administration of large amounts of morphine, assisted suicide and the administration of sedatives at the end of life. Caring for these patients always requires sensitive ethical, legal and moral evaluation. For this, it is necessary to understand the context of suffering, which often occurs in palliative medicine (O'Connor, 2005).

Medical ethics codified four basic principles: autonomy (independence, self-determination), nonmaleficiencia (doing no harm), beneficiencia (benefit), justicia (justice). A key role is played by the patient's informed consent, which is concluded between the doctor and the patient. Patients' rights represent an important code of ethics, where emphasis is placed on professional partnership. In addition to the general rights of patients, specific rights relating to groups of patients are being developed, e.g. Rights of oncology patients, Charter of rights of dying patients and others.

An important role, still underappreciated in Slovakia, is represented by ethics commissions, as special advisory bodies in matters of medical ethics and bioethics. The mission of ethics commissions is the protection of human rights and enforcement of respect for human dignity and personal integrity of individual participants in health care and biomedical research (Mojtová, 2010).

The ethical principles of providing palliative care are based on the awareness of the fact that the terminally ill is not a biological residue that would require anesthesia, resuscitation or ineffective prolongation of life. However, this is a person who is able to integrate into relationships, gain personal experience and grow personally. Dying in the ethical-psychological sense begins when the awareness arises that a specific person's illness is prospectively incompatible with life.

Survey Objective

The goal of the survey was to obtain information from the field of health and social care, perceptions of the issue of dying and death, and communication between workers and clients.

The subject of the work is health and social care provided to dying clients in selected facilities. As Dobríková – Porubčanová (2005) states, if we look at the patient as a multidimensional person who has a psychological, spiritual and social dimension, we must understand that if something affects a person, it will be reflected in all his dimensions. It follows that when treating patients, in addition to the biological side, we must also perceive its psychological, social and spiritual dimension.

File, methodology

By deliberate selection through the institution, we reached facilities that provide health and social care to seriously ill and dying clients. The facilities where we collected data were: Children's Hospice Plamienok in Bratislava, Hospice St. Bernadetky in Nitra and the Oncological Institute of St. Elizabeth in Bratislava. The survey sample consisted of 11 participants who voluntarily decided to participate in our survey. We chose a semi-structured interview as a research tool. The survey questions were open-ended. We conducted a semi-structured interview, where we had a content framework and questions ready, but we adapted them to how the interview unfolded. We asked the questions in such a way that the researched persons were able to answer them and that it was an issue they were familiar with.

The method we chose to evaluate the data obtained from our survey was quantitative-qualitative content analysis. Content analysis focuses on subject, content and form (Miovský, 2006). It designates these as the basic starting categories and through them, with the help of classification and categorization, we obtained and processed the units of analysis in order to subsequently process and interpret the obtained result.

Quantitative content analysis was performed on the basis of scores - absolute frequency, i.e. the repetition of answers of individual categories. Through induced categories, social phenomena are usually investigated, analyzed and evaluated in quantitative research. Qualitative content analysis was carried out on the basis of the categorical areas determined by us in advance and the corresponding induced categories - indicators. The indicators themselves were processed on the basis of questions and answers. In our survey part, the quality represented the answers that we obtained through interviews and then processed into the mentioned categories, and the quantity represented the repetition of the answers - the absolute number.

Results, Discussion

The main goal of our survey was to obtain information from the field of health and social care, perception of the issue of dying and death, and communication between workers and clients. We focused on social and health workers who care for dying clients. Currently, this topic is very relevant, the number of oncological diseases is still increasing not only in adults, but also in children. We still do not have enough hospices for adults, and there is still no inpatient hospice for children in Slovakia. As the number of seriously ill people who need to be cared for is constantly increasing, either in palliative wards, in hospices or in the home environment, it is also necessary to increase the quality of the provision of social and health services. It is not only a nice and pleasant environment that is important, but also high-quality health and social care provided by well-trained, constantly learning staff, which is still only slowly developing in Slovakia.

Our effort was to create a picture from the answers to the questions, which would express the frequency of the occurrence of answers of a certain thematic type and motive. First, we created categorical research areas according to the theory, goals and research questions, and then we categorized the participants' free answers to each of the questions into these categorical areas: Perception of the issue of dying and death, Communication, Health care, Social care, Perception of the future. From each categorical area, we selected only the most frequently recurring induced categories for the presentation of the results, which we transferred into tabular form and added a brief comment about the results in the given area.

Perception of the issue of dying and death

| Interest (Work as a meaningful fulfillment, interest in palliative care, dying and death - close topic, desire to help the dying) | | Experience with death (Experience with death, death of a loved one, working with the dying in a previous job) | | Death as a natural part of life (Death belongs to life, death is a natural part of life, end of life, completion of life, natural state) | | Change of attitude (I know more about the dying person, every client changes their attitude, it greatly influenced the attitude, it definitely influenced the perception) | | Faith in God, family (Faith that gives meaning to everything, God, without faith it would not be possible to manage, faith that nothing ends with death, help from the husband, children who are a great support, conversations with the family) |

When investigating the reasons for choosing to work with dying clients and the perception of the issue of dying and death, we learned that most of the participants had a personal experience with death in their lives, which gave rise to an interest and desire to help terminally ill people. Most workers saw death as a natural part of life, a transition to eternity. According to the findings, almost all participants of our survey believe in God, which affects the very perception and attitude towards dying and death, as well as the approach to dying clients in the facility. An interesting fact is the finding that, despite the positive perception of palliative and hospice care, they would prefer hospice care at home, if a suitable home environment was created.

Komunikácia

| Empathy (Understand what he needs, understand the client, understand his experience, understand the client's mindset, be sensitive) | | Accepting the other (Accepting the client, accepting the client's wishes and needs, taking the client as he is) | | Listening (active listening, hearing) | | Support (Encouraging, non-rejecting approach, supporting in hope, holding, supportive communication) | | Honesty, trustworthiness (Acting truthfully, answering questions honestly, communicating honestly, speaking openly, Trustworthy communication, responsibility for the client and his family, building trust) | | Sensitive provision of information (Completely informed about diagnosis and prognosis, right and need to know the truth, slow and sensitive transfer of information, informed kindly and with delicacy) |

We consider effective communication between workers, dying clients and their families and the provision of information to be a very important part of quality care. We found that the majority of participants are in favor of sensitively providing all information about the diagnosis and possible prognosis, because the vagueness of the diagnosis has an impact on the psychological state of the client. From the analysis, it was confirmed to us that it is very necessary to create plans in the facilities to improve communication skills, to introduce supervision, more frequent seminars and educational programs. We found that effective communication is related to the knowledge palliative care workers have. Therefore, further supplementary education is very necessary.

The joint procedure of doctors, nurses, psychologists and social workers in informing patients is important, it is basically a team activity. All doctors should be informed who and how spoke to the patient, with what result, or what procedure is planned next. It is best to inform each other, for example (Linhartová, 2007).

Health Care

| Nursing care (Soothing to pain relief, help with problems, treatment of pressure ulcers, medication administration, positioning, feeding, basic hygiene) | | Provision of information (Communication of diagnoses and prognoses to the client and his family, responsibility for providing information) | | Prescribing drugs (Prescribing drugs, prescribing drugs, administering drugs) | | Treatment (Provision of palliative care, symptom management, reduction of suffering, symptom management) | | Accompaniment (Providing accompaniment to the patient and family, responsibility for the psychological state of the client, preparation for impending death, interview) |

Under health care, all participants imagine nursing care and also accompanying the client. The doctor's role is to provide information, prescribe medication, treat and also accompany, similar to the role of a nurse, where, according to the participants, not only nursing care is important, but also accompanying the dying. At the same time, the findings provide an answer that nursing care for dying people is very important, but it is not complete without a connection with social care. On the other hand, we still do not have time space created for accompanying the sick and their loved ones by medical professionals. Therefore, it is important to increase the number of social workers in medical facilities, to create a legal status for them and to include them in the treatment regimen.

Social care

| Enforcement of social work (Enforce a social worker in the department, more social cases - more social workers are needed, social work is very important and necessary, it would be a benefit to society) | | Slowly developing area (Few social workers in departments, slow development) | | Accompanying, consulting, cooperation with the authorities (Accompanying clients and their families, accompanying survivors, visiting families, Providing information, consulting, providing verified contacts, consulting in the field of legislation, Processing through insurance companies, benefits in material need) | | Cooperation (Cooperation is necessary, important, exchange of information between workers, cooperation of the whole team) |

As can be seen from the answers, the majority of our participants are in favor of promoting social work, which they consider to be a great contribution to the health sector. A social worker should not claim the position of a health worker, but in order to make a significant contribution to improving the quality of life of a dying person and his family, he must have at least a basic education in the field of health care so that he can understand the connections. The possibility of being close to a dying person and helping him allows the accompanying person to know the uniqueness of each person. And according to the participants, accompanying and counseling is the most important task of social workers, as we found out.

Kovalčíkova (2005, In Mojtová, 2010) states that the goal of social work in healthcare is to provide support, support, guidance and help in improving the life possibilities of a person who is disadvantaged in a certain way due to his illness. It should also be emphasized that it is in the medical facility that latent problems are often discovered, such as child abuse and neglect, an unsatisfactory social environment, addiction to alcohol, drugs, and the like.

Perception of the future

| Do the job as well as possible (Help clients as best as possible, help clients as long as possible, take care of clients to the best of my ability) | | Positive perception of the future (Progress, beneficial for our entire society, developing in a good direction, quality and dignified dying) | | Education (Education in palliative care, education already during studies, more education on communication with the patient, training sessions, self-knowledge) | | Informing the general public (Informing the public about the provision of services, informing doctors and facilities) |

When investigating the perception of the future in palliative and hospice care, we found that there is a need for further education of workers in the palliative and hospice field and a higher salary evaluation.

Education and acquiring new knowledge in the field of hospice care very important. It is necessary to increase the educational level of medical personnel, students, nurses, pharmacists, social workers, psychologists, religious, volunteers, but also the general public (Kasanová, 2009a).

Recommendations for practice

It is necessary to adopt a national strategy for palliative care and to create a national strategic document for the field of palliative and hospice care, to build it into our system. In this way, securing the necessary funds to increase the number of hospice facilities for children and adults and to increase the availability to use these care services for the largest number of patients and their families, which requires government support. Countries such as Spain, Canada, Australia, etc., which have already implemented this national palliative care strategy, could serve as an example.

For the development of palliative and hospice care in Slovakia, it is very important to create cooperation between hospices, palliative departments, oncology, etc. and also with similar facilities abroad, so that everyone can unite and move forward together in development. This idea would be helped by the aforementioned national strategic document of the Slovak Republic for the field of palliative and hospice care.

Our work, through the results of research and theory, mainly points to the necessity of connecting social and health care so that the provision of care and services to dying clients is at a professional level. Hospice and palliative care is an integral part of social and health care, and that is why it should be approached as such.

Therefore, we consider it optimal to link health care, social care and psychological care, which must be based on ethical principles, without which the current care of dying people and their loved ones would be unacceptable. Health care would mainly consist of nursing care for the client, etc., social care would mainly focus on the client and his family, etc. and psychological care should be based on evidence-based clinical experience with medicine and psychology. The psychologist would conduct various therapies with the client, crisis interventions, etc. Through constant education and dividing care proportionately among all workers, we can provide patient care at the necessary professional level, which unfortunately does not yet exist in Slovakia.

From the results of the survey, we found that communication skills are very important when working with dying clients and their families. Doctors, nurses, and social workers need special training in communication to gain knowledge and experience that will enable them to recognize the client's need to be informed and respond to information, identify and resolve their concerns, and adequately assess their psychological problems. For example, it will help to improve communication skills. supervision, support of colleagues, various seminars and courses, regular meetings, supplementary education and mental balance of the worker.

New knowledge in the field of palliative and hospice care requires increasing the educational level not only of doctors, nurses, social workers, psychologists, but also of our entire society, in which it is especially necessary to de-taboo the topic of dying and death, which is often perceived as something bad and sad, and to teach our society to perceive dying and death as a natural part of life, because with this perception is also connected the perception of hospice facilities and, in general, the perception of palliative and hospice care. It is very important to prepare future workers who will take care of dying people already during their studies, so that they can provide the highest quality care and services.

Author: Mgr. Katarína Krellová Doc. PhDr. Martina Mojtová, PhD. University of Constantine the Philosopher, Faculty of Social Sciences and Health, Department of Social Work and Social Sciences

List of bibliographic references

[1] ANDRÁŠIOVÁ, M. et al. 2002. Hospice and Palliative Care - A Guide for Volunteers. Bratislava: Oto Németh Publishing House, 2002. 50 p. ISBN 80-968416-0-2. [2] BALOGOVÁ B. 2005. Seniors. Prešov: Akcent Print, 2005. 158 p. ISBN 80-969274-9-3. [3] BOMMEL, H. 1999. Family hospice care. Canada: Health care foundation, 1999. 63 p. ISBN 1-55307-002-X. [4] DOBRÍKOVÁ-PORUBČANOVÁ, P. et al. 2005. The terminally ill nowadays. The importance of palliative care. Trnava: Society of St. Vojtecha, 2005. 280 p. ISBN 80-7162-581-7. [5] HABURAJOVÁ-ILAVSKÁ, L. 2007. Man in the shadow of his end. Ethical aspects of death and dying: Proceedings of the international conference in České Budejovice. České Budejovice: University of European and Regional Studies, 2007. ISBN 978-80-86708-34-8, p. 84 – 91. [6] JASENKOVÁ, M. 2005. How to live together until the end. Children's home hospice care. Bratislava: Plamienok Children's Hospice, 2005. 30 p. ISBN 80-969462-1-8. [7] KASANOVÁ, A. 2009a. Only beyond the limits of life II. part. Hospice and palliative care in the complex of the health and social system. Nitra: University of Constantine the Philosopher. 2009a. 82 p. ISBN 978-80-8094-526-8. [8] KASANOVÁ, A. 2009b. Only beyond the limits of life III. part. Care of the dying. Nitra: University of Constantine the Philosopher. 2009b. 98 p. ISBN 978-80-8094-527-5. [9] LINHARTOVÁ, V. 2007. Practical communication in medicine. Prague: Grada, 2007. 152 p. ISBN 978-80-247-1784-5. [10] MIOVSKÝ, M. 2006. Qualitative approach and methods in psychological research. Prague: Grada, 2006. 332 p. ISBN 80-247-1362-4. [11] MOJTOVÁ, M. 2010. Social work in health care. Bratislava: University of Health and Social Work St. Elizabeth, 2010. 137 p. ISBN 978-80-89271-45-0. [12] O'CONNOR, M. et al. 2005. Palliative care. Prague: Grada, 2005. 324 p. ISBN 80-247-1295-4. [13] PICHAUD, C. – THAREAUOVÁ, I. 1988. Coexistence with older people. Prague: Portal, 1998. 156 p. ISBN 80-7178-184-3. [14] ŠOLTÉS, L. - PULLMANN, R. et al. 2008. Selected chapters in medical ethics. Martin: Osveta. 2008. 256 p. ISBN 978-80-8063-287-8. [15] VYMĔTAL, J. 1999. Medical psychology. Prague: Charles University, 1999. 278 p. ISBN 80-86123-08-1.

The lecture was given at the international scientific conference Applied ethics in social work and other helping professions, which took place on October 20-21, 2010, in Piešťany and was published in the proceedings of this conference: MÁTEL, A. – SCHAVEL, M. – MÜHLPACHR, P. – ROMAN, T. 2010. Applied ethics in social work and other helping professions. Proceedings of the international scientific conference. Bratislava : VŠZaSP St. Elizabeth. 413 p. ISBN 978-80-89271-89-4.