INTRODUCTION
Since 2005, October 12 has been World Hospice and Palliative Care Day. The slogan of the previous year (2020) was: “Sharing care.” Despite this difficult time, when the whole world is battling the COVID-19 pandemic, we must not forget people who need palliative care, that is, relief of difficulties and pain in an incurable disease. People who are dying, who deserve a pain-free and loving departure from life, need a lot of understanding, compassionate care, and selfless help from us who are healthy. “The only way to ensure a pleasant life is to ensure a pleasant life for others. The only way to ensure a pleasant life for others is to behave toward them as if we loved them. And the only way to behave toward someone as if we loved them is to truly love them!” (Jeremy Bentham, 1831)
The short Slovak dictionary states that the word “care” means the attention of another person that is devoted to the good state of someone, something, or the successful progress of something. In the Holy Scripture we find the story of Martha, one of Lazarus' sisters, whom Jesus raised from the dead. This story is proof of love and selfless care for one’s neighbor. It describes to us that care for others is a privilege, or a gift, the content of which is understanding the importance of the meaning of love for one’s neighbor and self-sacrifice. It is a blessing that requires the willingness to give up oneself and devote love to others, even to sacrifice oneself for others. Just as it was valid in Jesus’ time, it is valid now and concerns the whole human community. Paying attention to others and the willingness to care for others and serve them is an admirable and God-pleasing virtue that generates respect and recognition.
The word “care” has a very broad scope. We encounter it throughout our whole life. It accompanies us in all areas of life, during all life situations. It enters into the relationships we create with other people, with nature, and even with God. The whole Holy Scripture is a testimony to God's care for a person, for their physical and mental well-being, for mutual care between people, for common social sensitivity. God includes a person in care “from cradle to grave.” The roots of human care go back to remote antiquity, when it was primarily home care. That means that family members cared for other members of their family not only in everyday life, but considered it their duty to care above all for those in need, the sick and the elderly.
Our attempt to analyze aging and old age in a professional way appears only in the 18th century and later. Questions of death have accompanied humanity throughout its history, because a person realizes their mortality. The view of death developed in historical context over many centuries. In the Middle Ages, a person took death as a natural part of life, just as birth. A person’s death in that time was a social event attended by all neighbors and its ritual was unchangingly meticulous. In the 17th century, the group of attendees was significantly smaller; at the deathbed the closest family members gathered. (Tavernierová, 1996)
In today’s hurried times, people forget these basic life values and truths. Excuses of the type: “I do not have time to live my life, not to mention caring for others” prevail. Especially in the case of older and sick people, various homes and hospices arise, where caregivers and social workers try to correct these values. Care for the sick in various social facilities is a chapter in itself. The people who provide it must show a kind approach, humanity, and must earn the trust of the entrusted person and his or her family members.
In the field of social care for the sick and dying, we can again find examples of care in monastery history, where hospitals, homes for the elderly, or hospices often developed. For ages, medical therapy was considered a divine work and medicine itself an extension of God’s grace. The founding of such a center did not aim only at ensuring means to obtain good health, or its recovery, but also at providing all means to achieve salvation for both the sick as well as the founder. Every hospital had a chapel where liturgies were celebrated, and one priest was also designated for confession. All employees, together with doctors, performed their work duties up to the point of shared prayers. (Šak, 2010)
Illness can often lead to anxiety, to closing oneself in, to hopelessness, to despair, or even revolt against God. But on the other hand it can help a person mature, teach them what is essential in life and what is not. It can also awaken again the search for God and return to Him. “For God has not appointed us to wrath, but that through our Lord Jesus Christ, who died for us, we might obtain salvation so that we may live together with him, whether we are awake or asleep. Therefore encourage and comfort one another, as you also do.” (1 Sol 5, 9-11)
PALLIATIVE CARE
The word palliative comes from the Latin “palium”, which means a cloak or blanket. In free translation it means that when we cannot heal a wound, we at least cover it so the person in pain feels warmth, is not tormented by pain, and feels our participation in their suffering. It is also written in the book of Deuteronomy: “...so that he may lie down in his cloak and bless you. This will be your righteousness before the Lord...” (DT 24,13). Palliative care, otherwise called comfort care, is mainly focused on relieving patients from pain. Its purpose is to ensure comfort for the sick patient and achieve the best possible quality of life while life lasts. It is, in fact, specialized care for the quality of life of the sick, dying patient who is at a stage of disease in which healing can no longer be expected.
Palliative treatment and care complements curative and supportive treatment. Curative treatment deals directly with the causes of illness. Its result is the complete cure of the sick patient, while palliative treatment does not cure the illness, but the patient feels better subjectively. It is about easing pain and compassionate accompaniment of sick, and dying patients. Palliative care includes medical care provided by physicians (diagnosis and treatment), nursing care, rehabilitation, psychological care, therapeutic-educational care—for children, spiritual care and social counseling.
Palliative medicine is a specialty that deals with the diagnosis and treatment of patients with chronic incurable disease with time-limited survival. It is a complete system of help for dying patients and their families. It treats pain, helps to address psychological, social and spiritual needs of the patient and their relatives, thereby preventing and alleviating suffering. The goal of palliative medicine is to maintain the highest possible quality of life of the patient up to his or her death. (https://lnk.sk/pg38)
HISTORY OF PALLIATIVE CARE
Palliative care had its beginnings in the second half of the 20th century, when various facilities for chronically ill patients, so-called hospices, began to appear. They were created as a response to severe problems of incurably ill and dying patients. Due to many new medical discoveries, the course of many diseases changed and patients’ hope for complete healing increased. On the other hand, patients with incurable disease and dying patients became a burden economically for hospitals and a trauma for physicians, who wanted to be successful in treatment. Dying patients did not receive appropriate symptom treatment and were lonely, separated from their loved ones in impersonal hospital facilities. To these deficiencies, nurses and doctors responded by emphasizing the duty to not only treat and cure, but also to help effectively where cure is not possible and death is inevitable.
The English physician Cicely M. Saundersová is considered the founder of the first modern hospice in Europe, St. Christopher’s Hospice in London (1967), and a pioneer of the concept of “total pain” of an incurably ill and dying person, which has simultaneously somatic, psychological, social and spiritual dimensions. The first palliative care department was established in Montreal at the university hospital in 1973. It was founded by surgeon-oncologist Balfour Mount, who first used the term “palliative care.” This name was adopted and is still used today. In 1987, Great Britain accepted the concept of palliative medicine as a medical specialization at the level of other specializations. In 1988, the European Association for Palliative Care was founded, significantly contributing to understanding the need for palliative care as part of health care by both lay and professional public, as well as by the governments of individual states.
In 1998, the Poznań Declaration on Palliative Care in Eastern Europe was published. An important document concerning hospices and palliative care is the Recommendation of the Council of Ministers of the Council of Europe to member states on the organization of palliative care from November 2003, which, among other things, states: “Palliative care is not focused on a specific disease. It includes the period from the diagnosis of advanced disease to the end of bereavement, which may be years, weeks and more rarely only days. It is not synonymous with terminal care, but it includes it.” (https://lnk.sk/ues5)
MISSION AND CONTENT OF PALLIATIVE CARE
The fundamental tasks of palliative care are: a/ to try to improve the quality of life of the patient up to his or her death, b/ to provide relief from pain and other disease symptoms for the patient, c/ to relieve the patient’s suffering and stabilize his or her health condition, d/ in no case to try to hasten or delay his or her death, e/ to ensure comprehensive treatment and care by a team of professional staff, f/ to integrate psychological and spiritual aspects of care for the patient, g/ to provide them with a support system so they can live as actively as possible up to death, h/ to provide help to the patient’s relatives and close persons in coping with problems during their illness and also after death in the mourning period.
Palliative care is provided by a multidisciplinary team of doctors, nurses and other healthcare and professionally qualified workers. Hospice care is palliative care provided to patients with an incurable disease and dying patients in a hospice as an independent healthcare facility. It can be provided in institutional or ambulatory form (so-called mobile hospice). Palliative nursing care is mainly aimed at managing and satisfying the needs of the patient with incurable disease and the dying patient.
Palliative care includes terminal care, which means care for the patient with an incurable disease and dying patient in the last days and hours before death. Family care is part of palliative care and means psychosocial support for the patient’s family before the patient’s death, during dying, and after death. The aim of this care is to prevent mental disorders that arise from unprocessed experiences and the loss of a loved one. Special attention is required for children, who cope with grief and loss in a specific way.
Volunteers are an organized and trained group of people willing to spend their free time helping others selflessly. They do not provide medical care, even if by profession they are healthcare workers. If necessary, they perform auxiliary and secondary technical or cultural activities aimed at psychosocial support of healthcare workers, patients, or their families: e.g., giving information about the healthcare facility for orientation, accompanying to procedures, arranging the environment, small shopping, or cultural performances. They can participate in fund-raising activities for the palliative medicine department or hospice (selling second-hand clothing, applying for grants, etc.). (https://lnk.sk/ues5)
FORMS OF PALLIATIVE CARE
Outpatient healthcare in the palliative medicine specialty is carried out in the form of home care. It is a visiting service performed by the so-called mobile hospice. It is the ideal form of care for incurably ill and dying patients if their health condition is stabilized, disease symptoms are under control, the patient has family support and home care is available. Ambulatory healthcare in the specialty of palliative medicine is performed by mobile hospices as a visiting service of physicians, nurses and, as needed, other hospice healthcare workers in the patient’s home environment. Day clinics of palliative medicine provide all-day ambulatory palliative care, which is less than 24 hours, if the patient with incurable disease and dying patient requires daily nursing care, if the family cannot ensure social support 24 hours a day, or if the family needs to remain economically active.
Inpatient healthcare in the specialty of palliative medicine is provided by hospices as independent healthcare facilities intended for palliative care, located in a separate building. The optimal number of beds in a hospice is 20. A hospice may include a palliative care ward, a mobile hospice, a palliative medicine outpatient clinic, or other specialized outpatient clinics. Inpatient palliative care is also carried out by palliative medicine departments in hospitals. The optimal number of beds is 10 to 20, and single-bed rooms with equipment for patients for whom the presence of a close person is possible are recommended.
A patient with an incurable disease and a dying patient is hospitalized according to his or her needs. Admission to a department is arranged in the usual way by consultation between heads of individual departments, with emphasis on the urgency of pain treatment and other disease symptoms or serious psychosocial difficulties. Institutional healthcare also includes palliative medicine units established in geriatric, other healthcare and social facilities. These are independent units consisting of 2 to 3 single-bed rooms, intended for patients requiring palliative care. (https://lnk.sk/ues5)
PALLIATIVE CARE AND THE PRESENT
Aging of the population is a long-term global trend and the Slovak Republic has been part of this demographic development for several years. In May 2019, ŠÚ SR published information that in 2018 the aging index for the first time in the history of the Slovak Republic exceeded 100, i.e., the number of children (≤14 years) is smaller than the number of seniors (65+). According to Eurostat forecasts, Slovakia will age most intensely of all European Union countries and in less than 50 years Slovakia will change from one of the youngest countries in the EU to one of the oldest (in 2060 only Portugal will have an older population than Slovakia).
According to the Ministry of Health of the Slovak Republic, preparation of the entire society for this condition is insufficient. The consequences of this trend have the greatest impact on the sectors of labor, social affairs and family and on health care. Society should prepare for this situation in the near future with dedicated programs focused on supporting social integration of older people, programs aimed at increasing awareness of the needs of this generation and protecting it from undesirable social phenomena. These programs should be developed down to the local level, since an individual person’s experience always occurs in a concrete place. (https://lnk.sk/fbp3)
The Ethics Committee of the Ministry of Health of the Slovak Republic again addressed at its meeting on 10.12.2019 the issue of ensuring fair access to palliative, hospice and long-term healthcare under the conditions of the Slovak Republic.
According to the Committee, serious and long-standing shortcomings are also perceived in ensuring general accessibility and appropriate quality of healthcare and social care. This problem appears even more urgent in the case of people from vulnerable and disadvantaged population groups. In relation to the healthcare system this concerns, in particular, persons with disabilities, as well as those who are long-term, severely, incurably or terminally ill, dying, or older and alone, and people who are in difficult health or social situations. It also concerns persons close to them.
Further, long-term problems are deepening in an inadequately configured healthcare and social system lacking material and staffing resources. It is also one of the reasons for increasing public distrust in state institutions, as well as in the whole political, social and economic system. The Committee emphasizes that palliative care is primarily an extremely topical and rapidly developing area of medicine and nursing, which systematically focuses on the comprehensive improvement of quality of life of adults and children, especially those facing severe, life-threatening or incurable disease and its burdensome symptoms, or who due to it are approaching the end of life.
A special form of palliative care is hospice care. Alongside care for the patient’s physical health, palliative nursing and spiritual care also strives to fulfill psychological, social and spiritual needs. It guarantees the severely ill continuity of appropriate care in the entire required scope, full respect for their human dignity and, according to specific possibilities and needs, also accompaniment of their loved ones and later survivors.
The Ethics Committee of the Ministry of Health of the Slovak Republic recommends that when seeking required solutions, the following specific requirements are also taken into account: 1) Define and legally define ensuring fair, accessible and quality palliative, hospice and long-term care in Slovakia. 2) Strengthen legal grounding of palliative, hospice and long-term care for all incurably ill people who need this care. 3) Expand the network of palliative, hospice and long-term care workplaces, including necessary material, staffing and professional capacities. 4) Expand possibilities and improve conditions for education within professional preparation and professional development, ensure favorable conditions for professional placement and appropriate remuneration of professionals—doctors, nurses and other helping professions—for work in this field. 5) Support and expand opportunities for appropriate public information about palliative, hospice and long-term care, including support for appropriately motivated volunteering and philanthropy. (www.mzsr.sk)
CONCLUSION
Slovakia still has a long way to go in improving and reorganizing palliative care. The main task is to ensure its availability across the entire territory of Slovakia. A network of palliative workplaces including mobile hospices must be created. It is also necessary to ensure training of a sufficient number of healthcare staff (doctors and nurses) who should provide healthcare to patients with incurable disease in advanced and terminal stages. Of course, one must not forget the amendment of the law on long-term healthcare. It is also necessary to develop new forms of support for survivors, whether by social workers or volunteers, in cooperation with the Church and charity.
Given the long-term underestimation of the issue of palliative care, whose consequences society has felt in the current epidemiological situation, it is worth mentioning support for palliative healthcare at the Mother Teresa Hospice in Bardejovská Nová Ves. In 2020, thanks to financial support from the Prešov Self-Governing Region, they could improve care provision by improving spatial conditions, specifically through roof reconstruction. The financial grant was provided within the announced call “Výzva pre región 2020”, program 4 – Support for increasing quality in social services and palliative healthcare. (https://lnk.sk/sxrt)
In the Holy Scripture we read that illness and suffering have, from time immemorial, subjected human life and each person’s faith to test. Only through illness does a person realize their limitations, helplessness, dependence on others, and the possibility of an end. Therefore health is what one should care for and value, because we received it for free from God. “Beloved, I wish you to prosper in everything and be healthy—just as your soul prospers.” (3Jn 1,2)
I remember when my grandmother was leaving from a visit, she never forgot to remind us to care for ourselves, look after each other, and she finally added: “And most importantly, stay healthy!” Now, after years, I agree with her. Health is the most important thing. We all long for it very much. So that we can endure this earthly life to the glory of the Father God and in faith in His endless care for His children. Stay healthy, friends!
SOURCES
COSTECALDE, C.B. 2011. Family Bible. Bratislava: Slovart, ISBN 978-80-5560-228-8
ŠAK, Š. 2010. Care of the Church for the Sick. In: Social and Spiritual Review no. 4, 01/2010, Prešov: PBF PU, ISSN 1338-290X
TAVERNIEROVÁ, M. 1996. Palliative Care. Bratislava: Sofa, ISBN 80-85752-51-4
pain.sk. Palliative medicine and palliative care [accessed 27.4.2021 at 10.15]. Available at: https://lnk.sk/pg38
npz.sk. Bulletin of the Ministry of Health of the Slovak Republic, volume 54. [accessed 27.4.2021 at 11.00]. Available at: https://lnk.sk/ues5
minv.sk. Set of legislative changes for project PP1: Strategy of long-term care [accessed 28.4.2021 at 13.00]. Available at: https://lnk.sk/fbp3
charita-ke.sk. Support for social services and palliative healthcare at the Mother Teresa Hospice [accessed 28.4.2021 at 15.20]. Available at: https://lnk.sk/sxrt
mzsr.sk. Position of the Ethics Committee of the Ministry of Health of the Slovak Republic on the need to ensure fair access to palliative, hospice and long-term care [accessed 29.4.2021 at 10.10]. Available at: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwjGvNbkj6vwAhXjsYsKHTY1A10QFjABegQIAxAD&url=https%3A%2F%2Fmzsr.sk%2FZdroje%3F%2FSources%2Fdokumenty%2Feticka_komisia%2FStanovisko-EK-PHDS_30-1-.2020.pdf&usg=AOvVaw3LZzS27egpFMCWW2e57SWJ