Hospice and Palliative Care in the Republic of Poland

Hospice and Palliative Care in the Republic of Poland Hospice and Palliative Care in the Republic of Poland

Introduction

In an era that promotes activity, beauty, youth, and the broad cult of the body, speaking about suffering and illness has become something inappropriate, even out of place. All the more so, the problem of suffering that leads to death and the issue of the dying process itself becomes an unpopular topic. Suffering and dying are associated with time that brings specific difficulties, with declining overall functioning, loss of control over the course of one’s life, and awareness of being a burden to one’s surroundings. In addition, many patients cannot count on care from their own families—mostly because of a lack of skills and competencies. Despite this, silence about the hospice dimension of human life demonstrates an inability to analyze the whole of life more deeply.

A sign of modern civilization is ubiquitous progress, modernity, and the drive toward ever better, more comfortable life. We must remember, however, that just as in previous centuries, today too, a person’s life includes not only happiness, health, and prosperity, but also illness, especially chronic, incurable illness leading to death. This particular experience affects people even in an era of extraordinary expansion in nearly all areas of life. Despite enormous advances in knowledge and the efforts of science and technology in helping chronically ill patients, helplessness and the difficulty of jointly sharing in suffering are still often built into human life. In the face of changes in family models, flight from multigenerational family patterns, and a mental flight from old age and death, the burden of caring for people with disease, suffering, and dying falls on wide sectors of society.

It is undoubtedly a common stereotype that palliative treatment is seen as withdrawal from treatment, and hospice care as a place only for people who are dying. The literature on the subject, when addressing palliative care, usually links it to all actions taken at a time when the disease is incurable and death is already imminent.

Currently, the role of palliative care is increasingly recognized as a field that has much to offer much earlier in the course of progressive disease. As mentioned, the term “palliative” comes from the Latin “pallium,” meaning “mask” or “cloak.” This etymology indicates what palliative care essentially is: a kind of “cloak” that covers the effects of incurable illness or provides a mantle for people who feel abandoned and alone because medicine, as treatment-oriented care, cannot help them by design. Today, therefore, it is a highly complex and developed form of care for ill and dying people. The modern hospice movement was initiated in London in 1967 by Cicely Saunders, who opened St. Christopher’s Hospice as a specialist center for care of the dying. When Balfour Mont opened his own ward for patients in Montreal in 1975, he used a new term: “palliative care.” So, as A. Bartoszek notes, the concept of palliative care was not derived directly from Latin words, but from English words derived from palliatus such as palliate, meaning as participle or adjective “covered with a cloak,” “covered,” “alleviated,” “superficial”; and as a verb meaning “to cloak,” “to conceal,” “to mask,” “to ease suffering”; palliating—covering, concealing, and easing disease symptoms without curing them. From such terms this author considers the term palliative care (palliative care) 1 was formed.

In the literature, different terms are used, and there is also different understanding of the concept of palliative care. Its definition evolved over many years because it developed in many countries under diverse conditions. The ESMO (European Society for Medical Oncology) Palliative Care Working Group presents the following distinction among basic definitions: • Supportive care: its goal is to achieve the greatest possible comfort, functioning, and social support for patients and their families at every stage of illness and treatment. • Palliative care refers to the stage when the disease is incurable. • End-of-life care is palliative care during the approach to death. • Supportive care is the broadest term, including the others2.

Differences in nomenclature appeared not only in professional literature but also in legal acts, statutes, and expert opinions of leading societies. Other names were used referring to overlapping areas of medicine, such as “hospice,” “hospice care,” “end-of-life care,” “thanatology,” “comfort care,” and “supportive care.” These different names may arise from different cultural and linguistic conditions. Therefore, to systematize these concepts, it is useful to present their meaning.

Terminal care is an older term that was previously understood as full care for patients with advanced oncological disease and limited life expectancy. Newer definitions of palliative care do not refer to a limited life expectancy in the terminal phase of illness. Therefore, the term “terminal care” should not be used unless it refers exclusively to care delivered in the final period of disease (the last few days)3.

The main aim of palliative care is prevention and treatment of symptoms accompanying chronic and incurable diseases and improvement of patients’ quality of life. In the view of Górecki, the core focus in palliative care centers lies in medical procedures and thus it is organized either in dedicated hospital wards or in different wards with specialist palliative care teams. Regardless of whether palliative care is understood as a specific type of medical therapy, or in its broader meaning as a specific type of care that combines medical interventions and medical staff supplemented by psychologists, social workers, volunteers, clergy, etc.4.

Palliative-hospice care (PHC) includes holistic interventions by an interdisciplinary team (physician, nurse, psychologist, social worker, physiotherapist, chaplain, and volunteers), aimed at meeting somatic (pain relief, dyspnea and other symptoms, including rehabilitation and creative therapy), psychosocial, and spiritual needs through early identification of threats and needs, prevention and relief of suffering in patients with chronic, progressive, life-limiting diseases (advanced cancer and other chronic conditions that reduce quality of life), and support for their families. The goal is to improve quality of life (WHO, 2002; IAHPC 2008).

Palliative treatment, care, and support can be provided at home, in care homes, nursing homes, hospitals, hospices, and other places when needed. Today it is known that palliative care should be provided according to a model of “continuity of services from less to more specialized care.” It should start with primary care and end with access to specialized palliative care.

Non-specialist palliative care is provided by: • Community nursing care; • family physicians; • ambulatory nursing care; • general hospital wards; • care homes.

Specialist palliative care is provided by: • palliative care wards; • inpatient hospices; • hospital teams supporting palliative care; • home palliative care teams; • community hospice teams; • day palliative care centers; • hospital-at-home services; • palliative medicine outpatient clinics5.

2 The palliative care patient

When one learns the goals and tasks of palliative care and the principles of its functioning, one is led to the thought that it is evidence of putting into practice the most dignified humanitarian ideals. It indicates the development of human civilization in the right direction—toward highest values. It was created and organized for those who seem to have become useless, who do not fit the mindset of the modern world, who require effort and care from others, and whose condition reminds everyone of the existence of suffering and the inevitability of death. For these are exactly the patients of palliative care: all suffering, helpless, dying, testifying to human transience. Their number continues to rise despite advances in medical science and lifestyle changes. It is worth noting, for example, that studies and forecasts indicate that every year 1.6 million patients in European countries die from cancer and 5.7 million from chronic non-cancer diseases.

According to the World Health Organization, chronic diseases will become the leading cause of disability by 2020. It is estimated that 133 million people worldwide have chronic illnesses, and this number is expected to increase by 1% annually to 2030, resulting in 177 million chronically ill people. WHO data indicate that 75% of the global population suffers from at least one chronic disease, and nearly half of people with chronic illnesses have at least two conditions requiring ongoing contact with health care.

The term patient, used in many languages, denotes someone who is suffering and under the care of the health care system. Increasingly, in order to distinguish a sick person from a healthy one, attempts are made to use the term client. It still means a person who is simply the subject of care, a sick person, a patient, a client of health-care professionals.

As noted in the previous paragraph, palliative care is not intended for one particular disease or type of illness. Potentially, it applies to patients of any age, depending on likely prognosis and individual patient needs.

It should not be reserved only for patients with diagnosed diseases, but should be available to all people with life-threatening diseases. Access to palliative care should depend on need and should not be influenced by disease type, geographic location, socioeconomic status, or similar factors. As indicated in the literature, it is appropriate for any patient and/or family living with life-threatening illness or at risk of progression in that direction, with any diagnosis, regardless of prognosis, age, or stage of disease, when expectations and/or needs of such patients are not met and they are ready to accept this form of care. Palliative care can supplement and support basic treatment of the underlying disease, or it can become the main component of management. Some elements of palliative care may also be useful for patients at risk of disease progression and their families.

In practice in Poland, according to NFZ determinations, the basis for receiving palliative and hospice care benefits is a referral issued by a doctor within health insurance coverage. The basis for issuing the referral is medical indication, especially the presence of progressive, incurable disease.

The disease entities qualifying for hospice and palliative care include:

I. in adults: malignant neoplasms, sequelae of inflammatory diseases of the central nervous system, HIV disease, primary diffuse degenerations initially affecting the central nervous system, cardiomyopathies, unspecified respiratory failure, and pressure ulcers.

II. in children under 18 years: chronic viral infections of the central nervous system, HIV disease, sequelae of infectious and parasitic diseases, malignant tumors of the lip, oral cavity, pharynx, digestive tract organs, respiratory organs and thorax, bones and articular cartilage, mesothelium and soft tissues, urinary system, melanoma and other malignant skin tumors, breast, female and male genital organs, eye, brain, and other parts of the central nervous system, thyroid and other endocrine glands, unspecified and poorly specified malignant tumors, secondary and unspecified-site malignancies, malignant tumors of lymphatic, hematopoietic, and related tissues, multiple independent primary malignancies, in situ tumors (in situ, literally “in place”; meaning the disease has not yet spread to other regions), benign tumors of brain meninges and brain and other central nervous system parts, tumors of uncertain or unknown character, metabolic diseases, developmental disorders, sequelae of inflammatory CNS diseases, primary neurodegenerative disorders of CNS, other degenerative disorders of basal ganglia (Heller–Spatz syndrome), neuromuscular and muscle junction diseases (Duchenne muscular dystrophy, congenital myopathies, unspecified mitochondrial myopathy), cerebral palsy and other paralytic syndromes (childhood cerebral palsy). Other neurologic disorders, heart failure, sequelae of cerebrovascular disease, chronic unexplained respiratory failure, unexplained hepatic failure, hepatic fibrosis and cirrhosis, end-stage renal failure, rupture of intracranial structures and hemorrhage due to birth trauma, other birth injuries of the central nervous system, periventricular leukomalacia, chronic respiratory disease starting in the perinatal period (bronchopulmonary dysplasia beginning around birth). Congenital viral diseases, other neonatal brain disorders (neonatal cerebral ischemia). Congenital developmental disorders of the nervous system (congenital hydrocephalus, Dandy–Walker syndrome, holoprosencephaly, other brain tissue defects such as lissencephaly, spina bifida, cervical spina bifida with accompanying hydrocephalus, lumbar spina bifida with accompanying hydrocephalus, other congenital nervous-system developmental defects, Arnold–Chiari syndrome). Congenital developmental disorders of the heart and large vessels—applicable to children not eligible for surgical treatment, congenital laryngeal, tracheal, and bronchial defects, congenital malformations of gallbladder, bile ducts, and liver (atresia of bile ducts, Alagille syndrome), renal agenesis and other renal reduction disorders (renal hypoplasia, bilateral), pediatric polycystic kidney disease, osteochondrodysplasia with impaired growth of long bones and spine (achondroplasia—fetal chondrodysplasia), other osteochondrodysplasias, congenital developmental disorders of the musculoskeletal system not classified elsewhere, epidermolysis bullosa, ectodermal dysplasia syndromes (faciomatosis), other specific multisystem congenital syndromes, other congenital developmental anomalies not otherwise classified (multiple congenital anomalies not otherwise classified), chromosomal aberrations, undefined coma, traumatic brain injury (traumatic brain injury with prolonged unconsciousness), consequences of a variety of head, neck, and trunk injuries involving multiple body regions, intoxication by drugs and biological substances, toxic effects of usually non-therapeutic substances, damage caused by external agents leading to illness and death, consequences of traffic accidents, deliberate self-harm, adverse drug effects, adverse effects of pharmaceutical or biological agents used therapeutically, consequences of the beneficiary’s injury during surgical and medical procedures.

Criteria for admission of a child to home hospice care are: terminal phase of incurable disease, age below 18 years, and at least one permanent caregiver who can provide around-the-clock care in the child’s home.

The aim of care is, of course, the child and the child’s family. A disease limiting life in children is defined as one that often causes premature death. A life-threatening disease is a condition associated with a high risk of premature death due to severe disorders but offering the chance of long survival into adulthood. For example, children treated for malignancies or admitted to intensive care wards due to acute states. Pediatric palliative care is characterized by a broader range of diseases and a higher proportion of non-oncological diagnoses compared with adult palliative care.

In Poland, pediatric home palliative care (PHC) has been developing since 1994. It consists of providing active, comprehensive care to children with incurable diseases leading to premature death, in their place of residence. Its aim is to protect the child’s dignity, improve quality of life, and protect against futile and iatrogenic interventions. It includes symptomatic treatment and psychological, social, and spiritual support. Pediatric home palliative care is delivered by home hospices, which are most often non-governmental organizations.

Important information on palliative care for children in Poland is provided in professional literature. Between 1999 and 2010, there was a significant—almost sixfold—increase in the number of children treated by home hospices in Poland. Pediatric home palliative care most often covers children with neurological-dominant symptoms. The causes of this phenomenon are complex. Sick children are referred to hospices by physicians. Decisions to choose palliative care in many cases mean giving up life-prolonging methods for the patient, so one can assume this also reflects an evolution in attitudes of the medical community, involving avoidance of futile therapy.

The second factor contributing to the rise in patient numbers, alongside the evolution of physicians’ ethical attitudes, is continuous development of existing hospices and creation of new ones.

3 The patient’s family as the subject of palliative care actions

The issue of helping a sick person’s family should begin with the observation that it is distinguished as a group by the intimacy of relationships binding its members and by the durability of emotional ties. All studies presented in the literature confirm that, in fact, sick people receive most care, nursing, and comprehensive support from their own families.

The family is the nearest and most consciously experienced community for a sick person. Family ties are usually strongest and most enduring, hence the types of family bonds with the patient require special discussion. Family forms a relatively self-contained system of interactions in which all elements are interconnected and dysfunction in any one is always a sign of disruption in the functioning of the whole system. Thus, a family member’s illness disintegrates not only the life of the ill person, but equally produces significant changes in the functioning of the whole family. A novelty introduced by palliative care is that it not only covers the patient with terminal illness through holistic care, but also the family both during the disease course and in bereavement. It should be emphasized that severe illness in a family is a significant fact for this environment because all members face the challenge assigned by fate. They must take on many responsibilities previously shouldered by the sick family member, diligently carrying out complex and costly treatment.

It is noted that the family must then come to know itself better than before, protect each other from additional suffering, believe in love, be able to look calmly at illness and even approaching death. Family members cope in different ways and experience it differently. The vast majority need spiritual and psychological support in this difficult period. Sometimes it is enough simply to facilitate communication and help overcome mutual prejudices or wounds. In families already strained or conflicted, cancer can, especially in terminal phase, become a factor promoting mutual reconciliation and family reintegration. In situations where this cannot be achieved, hospice care should provide the blanket of compassionate care directly around the ill person and attempt to replace their closest ones in meeting such needs.

Family members and everyone emotionally close to the patient go through many difficult moments. They are deeply burdened by all the serious symptoms endured by the patient. They feel compassion, but at the same time helplessness before the sufferings of a loved one. They respond with fear to any symptom of pain or breathlessness. Throughout illness, they feel depressed, live under constant stress, and often feel exhausted—physically, due to continuous caregiving, and psychologically, due to fear of losing a loved one and of overwhelming suffering. Strong emotions are also triggered by the patient’s psychiatric symptoms, especially confusion or behavioral changes. The situation is particularly difficult in childless, small families, where caregiving burden often falls on one person. In addition, many factors influence caregiver stress, especially family age and developmental stage. The course of the disease itself is also very significant. Financial conditions, especially housing and living conditions, also play a role. For various reasons, the patient’s family can find itself in crisis. Members of families with what is called hereditary burden are in a special situation. Caring for a suffering patient evokes identification with one’s own person and creates particular fear and despondency.

Family atmosphere has extremely important significance in experiencing illness, and it should provide an optimal psychological climate. It is a special time, and therefore the forms of family ties and family attitudes toward the patient are varied. As noted, family attitudes as a community toward the patient may take the following forms: • Support—expressed in love, warmth, care, readiness to help and relieve suffering, in a smile, understanding, tenderness, subtlety, sensitivity, and nurturance. • Lack of sustained interest—shown as occasional visits to hospital or care home or limiting help to the simplest and easiest tasks, e.g., only giving medication. A deliberate acceptance that the patient should be alone with personal suffering and has no right to disturb the peace of healthy family members. • Fatigue caused by long duration of illness, constant symptoms, numerous needs, and the patient’s maladaptive posture toward both illness and others. This fatigue is shown even while providing direct care, including one’s inability to effectively help. • Indifference—complete lack of engagement, no personal concern for the patient despite being aware that he or she needs and expects this help from close family. • Rejection, which shows a desire to get rid of the patient and fully break contact. Deliberate forgetting of the person’s existence. Creating inaccurate and slanderous situations in relation to the patient. Persistent self-justification without perceiving the harm inflicted on a person in need of care. The consequence of such a family attitude is, of course, shifting responsibility for the patient onto state institutions. • Profit-taking from the family member’s illness. This appears as appropriating the patient’s material goods, such as housing, pension, inheritance, money, or other assets. It also occurs that medical records and certificates about the patient are used and interpreted by different family members for their own benefit, in order to obtain monetary or in-kind benefits.

4 Support groups in palliative care

According to recommendations, the core palliative care team consists of physicians and nurses. The extended team includes other specialists such as psychologists, physiotherapists, social workers, and clergy. A key feature of palliative wards is a team of workers trained in different medical professions and volunteers. In addition, there must be the possibility of ongoing cooperation with other professionals. All members of the core team should complete training in palliative care accredited by national professional societies. Among medical staff there should be a specialist with knowledge and skills in palliative medicine. Nurses should complete advanced palliative care training, while volunteers should complete hospice volunteer courses. By contrast, support groups focus on the life problems of families living with illness of a close person.

As emphasized, in the care of an ill person, collaboration of psychologist, physician, nurse, social worker, clergy, and volunteer is of great importance, together with education of the patient and family. Today, in Polish hospitals about 50% of patients die, most in the course of chronic diseases in which death is preceded by a terminal phase. Such a situation points to the great need to care for the dying by organizing good and competent care. Hospital Palliative Care Support Teams serve this need for patients, their families, and at the same time medical personnel. The role, degree of engagement, and interventions of such a team are always discussed and adapted to the patient’s current condition.

In the palliative care system, the hospital support team plays an important role by providing specialist advice on palliative care and support for others. Providing specialist palliative care requires a team of various qualified professionals and an interdisciplinary style of work. Specialists may include: oncologist (medical oncologist/radiotherapist), including pediatric, general practitioner, neurologist, including pediatric, psychiatrist, urologist, ENT specialist, pulmonologist, gynecologist, pediatrician, surgeon, anesthesiologist experienced in invasive pain treatment methods. The team’s main role is to give guidance and advice to hospital staff on ways of relieving pain and other distressing symptoms in their patients. This generally requires an initial comprehensive assessment of issues, familiarization with somatic, psychosocial, and spiritual needs of the patient and family members. Cooperation consists of coordinating joint actions for patients on various specialist wards. The team cooperates closely with the ward’s attending physician and staff. Similarly, support in hospices is organized so that in addition to nurses and physicians, available around the clock in limited hours or at designated times, there should be: • social workers; • a specialist trained in psychosocial support; • an appropriate number of office workers, administrative secretaries, and assistants; • physiotherapists; • professionals qualified in bereavement support; • spiritual care coordinators; • volunteer coordinators; • clergy; • wound-care specialists; • specialists in lymphedema treatment; • occupational therapists; • speech therapists; • dietitians; • pharmacists; • supportive therapists; • trainers/instructors; • librarians.

It should be noted that the basic palliative care team of trained nurses and physicians, supported by psychologists, social workers, and whenever possible physiotherapists, is the minimum. Other staff may be members of the basic team, but will usually only cooperate with it.

An interdisciplinary specialist team helps the patient in the home setting among family members to benefit from home atmosphere, autonomy, and comfort unavailable in hospital conditions. Ongoing medical care is provided free of charge and is also available on non-working days. The home is supplied with equipment facilitating nursing and rehabilitation, and essential equipment for therapy: an infusion pump for subcutaneous medications and an oxygen concentrator. Frequent visits by trained nurses, working with a palliative physician, allow good connection with patient and family, enabling symptom-based observation of patient condition and physical function. They reduce, and can even completely eliminate, pressure ulcers (in bedbound patients). They also help monitor therapy and adjust it while simultaneously educating patients and families in ongoing care and symptomatic treatment. Families receive instructions on how to act in urgent situations that may occur.

Support groups may be formally constituted or informal. They organize meetings mainly for experience exchange. Help consists primarily of emotional support, and often also practical advice regarding care of the patient, communication with physicians, hospitalization, and available material support such as benefits. Group members share experience and support those they assist. Full confidentiality is of course foundational here. Their activity expresses the level of awareness of modern society and conviction in the vital role of mutual aid in the most difficult moments of human life, related to the sufferings of illness and dying.

Conclusion

In this context, rejecting reflection on suffering, dying, death, and hospice accompaniment in the last moments of life means rejecting a concrete reality, because the transience of daily life linked with suffering and the process of dying constitutes a real and regular part of human life. Until recently, a stereotype of avoiding discussion about issues related to persons needing hospice and palliative care still prevailed. This state led to negative experiences in social life. The world of marketing, advertising, the Internet, and the newest media technologies tends to frame suffering and hospice care as particularly negative times. In this perspective, we should try to awaken in young people sensitivity to suffering, especially the suffering of persons needing hospice and palliative care. The point is that youth passes quickly, and someone healthy today may tomorrow need hospice and palliative care. The social context of suffering, the dying process, and death reveals great importance for deeper sensitivity to people at the terminal stage for proper interpretation of the meaning of human reality and human functioning in the various communities of family, society, and the state. “Today, as Benedict XVI noted, given that health care conditions have changed, there is need for closer cooperation between medical specialists working in different health institutions and the Church communities present in the area.”

Author: Prof. nadzw. dr hab. Ewa Kucharska Literature

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