The Functioning of Hospice in the Perception of Family Members of Cancer Surgery and Hospice Patients

Background: Palliative care in Poland is for all dying people and their families to have timely access to quality care services. The study aimed to assess the perception of the role of hospice care by families of patients treated in oncological surgery departments and hospices. Methods: The study included 211 family members of cancer patients, comprising 108 family members of cancer surgery patients (Group I) and 103 hospice patients (Group II). The study used a diagnostic survey method with a proprietary questionnaire. Results: 74.9% of people in Group I and 84.6% in Group II experienced positive associations with hospice care. 86% of respondents from Group I believed that hospice is a place where patients can die with dignity, while 68.3% of those from Group II believed it is where patients receive professional care. 56.7% from Group I and 65.4% from Group II did not feel anxious about hospice care. According to 68.6% of people in Group I, informing the patient that he or she is in hospice as well as about his or her disease should depend on the patient’s condition. In the opinion of 75% of Group II, the patient should always be informed. In Group I (68.3%) and Group II (91.5%), the dominant opinion was that the family should take part in the care and treatment of the patient. 78.4% of respondents in Group I and 96.4% in Group II recommend hospice to other families. Conclusions: Most families of cancer patients from both the oncological surgery departments (Group I) and hospice (Group II) had positive first associations with hospice care. However, families from Group II had more critical remarks on hospice functioning.


Introduction
Palliative and hospice care are designed to relieve pain and distressing symptoms of a disease and maintain the patient's quality of life at the highest possible level [1,2]. In Poland, the National Health Fund finances several types of such care: outpatient palliative medicine clinics, stationary hospice or palliative medicine departments in a hospital, and home hospice [3]. Palliative and hospice care covers mainly people with cancer, AIDS, consequences of diseases of the central nervous system, some types of respiratory failure, cardiomyopathy, chronic wounds, and ulcers from bedsores. Cancer is Poland's leading principal diagnosis of hospice patients (90%).
A diagnosis of cancer changes the entire family's life and the patient's immediate environment [4]. People in the patient's immediate vicinity express strong emotions, worries, and fears. Cancer never only affects a sick person. It affects the everyday life of the whole family and forces a change of roles in the family, along with the rhythm of the day and daily habits. In many cases, it also changes the economic status of the family. Thus, family members become so-called "second-line patients" [5].
Psycho-oncologists have distinguished four characteristic attitudes that families have towards neoplastic disease, and families may present alternating attitudes or periodically exhibit features typical of each of them [6]: • Active cooperation-active, close-attitude cooperation of the whole family with the patient and doctors; family members are open to communication and honesty; they take the doctor's advice; many of them frequently come up with their initiatives. • Task-related-limited to passive esteem; family members show no particular commitment or initiative. • The critical-negative perception of the treatment process and its effects; criticizing medical personnel; attempting treatment on their own, which requires a firm response from doctors, as it may harm the patient. • Expressed in total disengagement-family members assume that they are obliged to treat and care for the sick on their own, disregarding the responsibility of doctors and medical staff.
Patients with advanced cancer often experience pain, dyspnea, and distressing respiratory symptom, and use intensive, hospital-based services near death [7]. Hospice offers an alternative, patient-centered model of care focused on relieving suffering, and often delivers services within the home environment [8].
It has been accepted in Polish culture that parents help their children enter adult life, who in turn later serve their parents in their old age. However, it is not uncommon for people to face situations where the only solution is to commit a loved one to a care and treatment institution or a hospice. These types of decisions are never easy.
There are only a few studies on the perception hospice care by families in Poland [9].
The study aimed to compare the perception of the role of hospice by families of patients treated in oncological surgery departments and hospices.

Materials and Methods
This is a quantitative study. In the group of families in oncological surgery (Group I), 130 questionnaires were distributed, and 108 questionnaires were returned-50.8% from women and 49.2% from men. In the group consisting of families of patients in hospice (Group II), 150 questionnaires were given, and 104 were returned, 67.3% of responses from women and 32.7% from men.

Ethics
The research was carried out after obtaining the approval of the Bioethics Committee no. APK.002.175.2020 of the Medical University of Bialystok, Poland.
All methods were performed in accordance with the Declaration of Helsinki.

Data Collection
The study used the original questionnaire, which contained questions about the respondents' opinions on pain, suffering at the end of life, feelings during contact with the dying, the patient's struggle for life when facing the inevitability of death, euthanasia, the perception of hospice, hospice requirements, the need to inform the patient about their illness and the fact that they are in hospice, the hospice staff, the family's participation in the care/treatment of the patient, the patient's feeling of loneliness, the expected support from hospice, the desired religious practices in hospice, recommending hospice to other families as a form of care, public attention to palliative care, problems in patient care regarding those facing death, and opportunities to improve patient care at the end of life.

The Statistical Analysis
The statistical analysis was conducted using Statistica 13 P.L. Results are presented as mean values ± S.D. Chi 2 test with Yates' correction and Fisher exact test were used to compare the percentage answers of hospice patients' families with patients' families on the oncological surgery ward. The critical level for all tests of significance was p < 0.05.

Results
According to 64.8% of respondents in Group I and 51% in Group II, pain and suffering at the end of life is primarily a physical experience. Other indications are presented in Table 1. The respondents from Group I (48.2%) and Group II (50.0%) declared that they most often felt anxiety during contact with the dying. 59.4% of family members from Group I and 13.8% from Group II did not avoid contact with the dying person. Other indications are presented in Table 2. The majority of respondents from Group I (72.1%) reported that it was absolutely necessary to fight for the patient's life in the event of the inevitability of death. Only 37.2% of families from Group II said the same. Other indications are presented in Table 3.  Table 4. It was shown that 74.9% of Group I and 84.6% of Group II family members had positive initial associations with hospice care. Most respondents thought that hospice did not drive anxiety (56.7% from Group I and 65.4% from Group II). In Group I, the prevailing opinion was that hospice was a place where patients could die with dignity (86%). Most respondents reported that patients should be in hospice because the hospice staff were greatly supportive, showing much kindness and courtesy (92.5% from Group I and 100% from Group II). The remaining results are presented in Table 5.  According to 47.5% of family members in Group I and 67.5% in Group II, the waiting time for admission into hospice should be less than 8 days. The remaining results are presented in Table 6. The majority of respondents from Group I (68.6%) agreed that informing the patient that he/she is in hospice is important and that illness should depend on his/her physical, mental, and spiritual conditions. 75% of those in Group II shared similar opinions. The remaining results are presented in Table 7. The majority of respondents from Group I (98.2%) claimed that any doctor (98.2%) and nurse (97.5%) could work in hospice care. According to respondents from Group II, only doctors specializing in palliative medicine (78.8%) and nurses specializing in or taking a course in palliative medicine (62.5%) should work in hospice care. The remaining results are presented in Table 8. According to Group I (68.3%) respondents and Group II respondents (91.5%), families should take part in the care/treatment of the sick person. The remaining results are presented in Table 9. Respondents from Group I (54.7%) and Group II (62.4%) reported that hospice patients do not feel lonely. They agreed that support should be provided primarily to the sick (98.7% from Group I and 85.6% from Group II), and it should be provided mainly by a clergyman. The remaining results are presented in Table 10. The most desirable religious practice in hospice was Catholic mass (86.7% from Group I and 87.9% from Group II). The remaining results are presented in Table 11. According to 87.3% of family members of patients from Group I and 59.7% from Group II, society does not pay much attention to palliative care. The remaining results are presented in Table 12. The subjects from Group I saw problems with patient care at the end of a patient's life, mainly in the increasing number of patients with chronic diseases (96.7%). Moreover, respondents from Group II reported that financial expenditures on hospice were too low (50%). Details are presented in Table 13. In the opinion of the greatest number of respondents from Group I, improving the quality of medical care in hospice would result in an increase in the number of medical personnel (87.4%) and an increase in the number of beds (82.4%), and would be seen as showing more kindness and support for patients and families (92.8%) in (Group II). Details are presented in Table 14. Most respondents from both groups recommended hospice as the place of death.

Discussion
Most families from both studied groups had positive first associations with hospice. The diversity of opinions of the surveyed families on the functions of hospice was noted. For example, families of hospice patients (Group II) had more remarks on the scope of information, the role and composition of the staff, the participation of families in the care/treatment of the patient, the patient's feeling of loneliness, the expected support, and desired religious practices in hospice.
In the present study, the most significant number of people (75.2% from Group I and 45.2% from Group II) were against euthanasia. In Group I, 35.8% of the respondents did not consider any methods of euthanasia to be applicable, and 46.2% of respondents in Group II considered turning off life-support apparatus as an acceptable method.
The word "hospice" is often understood to be a place for patients and their families to spend the last days of the patient's life, simply "waiting for death." In the study by Łukaszuk et al. [10], 48% of respondents had negative thoughts associated with hospice. However, 47% of the respondents thought positively about it. Different results were obtained in the present study: 74.9% of family members of patients from oncological surgery departments and 84.6% of families of hospice patients had positive first associations with hospice, and most often, they did not feel fear when thinking about hospice.
Hospices should also provide access to social services until the patient's death. Death is treated as a normal process and is not hastened or delayed. Hospice also offers hope of relieving pain and other troublesome symptoms through professional care. Many studies have shown the effects of palliative care in reducing disease symptoms and improving quality of life. However, their interpretation is difficult to decipher due to methodological differences regarding the time of the study's conduct and the small number of patients [11][12][13][14][15][16].
In the current study, the group of families of patients in oncological surgery wards had the prevailing opinion that a hospice is a place where patients can die with dignity, and the group of families of patients in hospice stated that it is a place where patients receive professional care.
Research conducted by CBOS in 2009 [17] showed that Poles almost universally speak of palliative care with appreciation. The operation of home hospices was supported by 94% of respondents and 96% of inpatient hospices. However, despite the widespread social support for hospice activities, most respondents believed that inpatient hospice is where dying people should go only in exceptional circumstances, e.g., when the family cannot provide them with specialist care. The respondents from the current study believed that hospice was the only appropriate place for terminally ill people. At the same time, the surveyed members of both families expressed the conviction that hospice was a place only for people with cancer, and the families of surgical patients more often claimed that this place was only for patients just before death (53.7% vs. 6.7%) Leppert et al. [18] compared students' and doctors' difficulties in communicating unfavorable news about a disease and prognosis. The percentage of respondents ready to provide complete information was only 28% among students and 24% among doctors. Most patients (85%) from a study by Mess et al. [19] claimed that a person should always be informed if they have an incurable disease. According to Coughlan [20], most patients receiving chemotherapy for cancer knew their diagnosis in Ireland. In contrast, only 32% of patients in Spain received information about their current health status [21]. In a study by Chua et al. [22], almost all patients wanted information about the disease, tests, research, treatment, side effects, psychosocial support, and financial issues. The results of other studies also confirm that cancer patients have many information needs, and the lack of such information leads to increased anxiety [23,24]. In the opinion of most of the surveyed family members of patients in the oncological surgery ward, informing the patient that he or she is in hospice and about his or her disease should depend on the patient's physical, mental, and spiritual conditions. Spiritual care is integral to providing quality end-of-life care [25,26]. However, patients often report that this aspect of care is lacking. For example, in a study by Bejda et al. [27], the presence of chaplains or the holy Mass in hospice did not arouse any dissatisfaction. Similarly, in the present study, the respondents from both groups considered the mass and the rosary prayer as a desirable religious practice in hospice.
Patients and family caregivers valued the personal qualities of staff, their experiences and specialized knowledge and skills, and the development of a close rapport amongst staff, patients, and their families [28,29]. However, common reasons for patients' dissatisfaction with hospice care include too-rare contact with medical professionals involved in their care, poor communication, insufficient care equipment, and a lack of emotional support from the family.
In the opinion of the most significant number of surveyed families of patients in oncological surgery wards, the improvement of the quality of medical care in hospices would result from an increase in the number of medical personnel and an increase in the number of beds, along with an increased demonstration of kindness and support for patients and their families.
It is worth noting that the family's participation in palliative care is usually very high [30]. In addition, family members play an important role in providing emotional support to patients [31,32]. In the current study, most of the respondents from both groups were convinced that the family should take part in the care/treatment of the patient.
It should be noted that families can often feel shame that they have "given" their loved one to hospice. Therefore, it is necessary to continually increase society's awareness about hospice care, emphasizing that every family's situation is different, and each patient's case is considered individually in hospice. Unfortunately, in the public consciousness, palliative treatment is still associated with the terminal stage of neoplastic disease. It is often associated with an unrealistic perception of the possibilities and effectiveness of oncological treatment. It is, therefore, necessary to promote the idea that a patient in a hospice is entrusted with professional care, and all efforts made there are aimed at improving the patient's quality of life.

Study Limitations
The limitations of the current research include the insufficient number of members of the studied families and the assessment of families from only the oncological surgery departments and not from the chemo or radiotherapy departments. In the future, it would also be worth checking what the tested opinions are influenced by, e.g., the respondents' life satisfaction and previous experiences with a chronic disease in the family.

Conclusions
Most families from both studied groups had positive first associations with hospice; they did not fear it when they thought about it and would recommend it to other families as a form of care for the sick.
The diversity of the opinions of the surveyed families on the functions of hospice was noted. For example, families of hospice patients (Group II) had more remarks on the scope of information, the role and composition of the staff, the participation of families in the care/treatment of the patient, the patient's feeling of loneliness, the expected support, and desired religious practices in hospice.
Families of patients from oncological surgery departments were more convinced than the families of patients in hospice that society does not pay much attention to palliative care. Informed Consent Statement: Participants were informed of the purpose and procedures of the study prior to the start and had the right to withdraw at any time. Informed written consent was obtained from all participants prior to participation. Data Availability Statement: All data sets on which the conclusions of the paper are based are available upon request to the corresponding author.