Open access peer-reviewed chapter
Abstract
The purpose of this chapter is to highlight the importance of palliative care and attitude towards end-of-life among cancer patients. Besides, it will focus on how the attitude towards cancer patients is defined and structured, and what are some of the factors that can have an effect on attitude. A person’s attitude towards an object (person, events, things) is determined by their feelings, emotions, beliefs, knowledge, and cultural attitudes (ethnic, racial, and religious factor). Moreover, the current chapter will try to clarify the misconceptions and fears of patients and caregivers towards palliative care and how we should try to change public perception. Attitudes towards palliative care are important not only to healthcare professionals but also to patients and their family members’ attitudes toward cancer. The quality of life of a cancer patient has a direct connection with the professional and nonprofessional caregiver’s knowledge of supportive care and attitude towards end-of-life care. Supportive and palliative care is an important component of the spectrum of health care services in the delivery of the best practices for cancer patients. Health care professionals play pivotal roles in the delivery of palliative care for cancer patients as they have to provide health care services with a positive attitude and also be prepared mentally.
Keywords
- supportive care
- palliative care
- attitude
- mental preparedness
- end of life
- cancer
1. Introduction
Recent researches have shown that a positive attitude is more beneficial to the patients than clinical treatment. The benefits include the relief of pain, improving the patient’s recovery, reducing the side effects of treatment, preventing depression, Health care professionals (HCP) play an important role in improving the quality of life of patients in palliative and supportive treatment by providing them with physical, functional, emotional, and social well- and the recovery of the surgical wound is through the appropriate approach.
In order to achieve the best possible quality of life for patients and families, healthcare professionals need to acquire specific skills and have positive attitudes towards palliative care, so that they can respond appropriately to patients and their families’ needs [1, 2]. HCP are not only concerned with the quality of life of the patients but also help change their attitudes towards illness, educate them on how to protect their health, and prevent different diseases. In addition, the two most important attitudes for people with cancer first is the immune level control, and second is food management. The immune level control is done by laboratory test which shows vitamins minerals deficits for you and which one is overloading in your body. Proper food management helps you to cope with your cancer, reducing the side effect of cancer treatment, preventing the spreading and the recurrence of cancer.
Therefore, the content of this topic covers are the basic concepts of attitudes, the health professionals’ attitudes towards cancer patients and their families, the public attitudes towards cancer and the cancer patients’ attitudes towards food and nutrition management.
2. Measurement of attitude towards palliative care
2.1 Understanding about attitude
Social-cultural knowledge is important in the understanding of palliative care [3, 4, 5]. Attitude, which referred to a force or quality of mind, seemed much more appropriate [6, 7]. Traditionally, attitudes have been considered to have three fundamental components: affective (feeling and emotional reaction) behavioral (individual intention that self-concept), and cognitive (beliefs, knowledge, thought, experience) components to the attitude object [6, 7, 8, 9] (as shown Figure 1).
Figure 1.
Response of attitude model by Gelegjamts [
Attitudes refer to the positive or negative attitude evaluations that people make about any aspect of reality [11]. Attitudes are directly related to the thoughts and beliefs one has towards object of attitude [6] these beliefs and attitudes can also impact the level of palliative education [12].
Cultural factors of attitudes such as race, religion, ethnicity may also have a perspective effect on a patient’s suffering and recovery.
The attitude of healthcare professionals towards dying patients may vary based on their cultural structure, religious thought, social environment, family structure the technology used in their unit, communication methods, palliative care training, and previous experience of encountering death [13].
A supportive care attitude has recognized the psychosocial features and problems that make every patient a unique individual and these unique characteristics can greatly influence suffering and need to be considered when planning caring service [14].
2.2 Measurement of attitude towards object
In 1928 Louis Leon Thurston said, “attitude can be measured” [8] and “attitude can be learned” [6]. Humans are not born with attitudes, and they acquire attitudes during their lifestyle and course of socialization [6]. Attitudes measurements have followed the explicit attitude (acquired consciousness) and the implicit attitude (subconsciously) dichotomy, attitude can be examined through direct and indirect measures [15].
The Implicit attitude measures are more valid and reliable. This has important implications are implicit attitude measures (such as self-reports). The implicit measures help account for attitudes that a person may be aware of or want to show [16] and usually rely on an indirect measure of attitude. The implicit attitudes measurement tests, include the implicit association test, evaluative and semantic priming tasks, the Extrinsic Affective Simon Task, Go/No-Go Association Task, and the Affect Misattribution Procedure. The explicit attitude measures are direct measurement and attitude-related acquired knowledge. The explicit measure is lower valid and more reliable than the implicit measure because people are often unwilling to provide responses perceived as socially undesirable and therefore tend to report what they think their attitude should be rather than what they know them to be [17]. Explicit and Implicit attitudes did not correlate: the model of dual attitudes [18].
The following points highlight the top five techniques used to measure the attitude of an individual. The techniques are [19]:
Method of Equal Appearing Interval (Developed by L.L. Thurstone and Chave. 1929)
Method of Summated Rating (Developed by Likert)
Social Distance Scale (Developed by Katz and Allport under the guidance of Gallet and Bogardus.)
Cumulative Scaling Method (Developed by Guttman’s cumulative scaling method, 1944)
The Scale Discriminating Technique. (Developed by Edwards and Kilpartic.)
Method of summated rating
Likert developed this method of summated rating and is famous for constructing several attitude scales to measure attitudes towards various complex issues.
Liker’s scale is presented in five categories such, on a 5-point (Strongly Agree, Somewhat Agree, Neutral, Somewhat Disagree, Strongly Disagree) scale, for example, researchers assume that the psychological difference between Strongly Agree to strongly disagree [6].
The total score for each individual subject for all the statements is calculated by summing up each individual response. The use of ‘Item Analysis’ in the construction of attitude scale is the most important feature of Likert’s scale. In this scale, the individual scores are interpreted in terms of the scores obtained by a group of individuals which is commonly done in psychological test construction.
2.3 Measurement of attitudes towards end of life
Many tools have been developed to measure the attitude for health care professionals such as physicians, nurses, and medical students and the tools usually measure with their knowledge, attitude, and practice (KAP).
It is important to have tools that allow us to know the attitudes of health care professionals towards the care of patients who is under Palliative care [9]. Attitudes towards palliative care were defined as feelings, thoughts, attitudes, and comfort level towards care of the patients and their family [5, 20] and most of the available tools are in attitude and competence in dealing with death and dying tools that are Frommel’s attitudes towards care of the dying (FATCOD—A for nurses, FATCOD-B for students) scale by 1991 [21]. FATCOD tool has been used with physicians and nurses form different countries and a few countries’ reports have been using for psychologists and social workers [5, 9, 13, 22, 23, 24]. This tool is specifically designed for evaluating nurses and has an equal number of positively and negatively worded items and responding rate is 5 point on the Liker scale, ranging from 30 to 150. Higher scores reflected more positive attitudes towards the end of life. It is necessary for health care professionals to better understand death, accept, and prepare for it with a mature attitude [25, 26]. Death attitude profile revised (created by Wong, Reker and Gesser in 1994 [27]) tool is reliable and valid assessment instrument used to identify attitudes about care at the end of life among clinicians [9]. DAP-R reliability values were high and the five domains of attitude towards death i.e., fear of death, death avoidance, natural acceptance, approach acceptance, and escape acceptance, respectively [26, 28].
Additionally, many study has used attitude related tools and scales such as the cancer attitudes questionnaire, the attitude assessment questionnaire, the cancer attitude inventory, and attitudes towards pain.
3. Health care professional’s attitude about palliative care for cancer patients
3.1 Introduction about supportive and palliative care among cancer patients
Palliative care (PC) is a specialized medical care for people living with a life terminal illness and provides relief from the symptoms and stress [29] including people who have stopped treatment to cure or control their disease [30]. Anyways the goal of PC is to improve quality of life for both the patient and their family members.
PC and SC (supportive care) are appropriate for not only cancer patients but also those with serious illness, regardless of whether or not they are receiving life-limiting therapies and can be delivered in inpatient and outpatient settings appropriate at any age, at any stage and can be provided together with curative treatment [31]. Palliative care incorporates the whole spectrum of care-medical, nursing, psychological, social, cultural, and spiritual [32]. A holistic approach, including these extensive attitudes of care, which is a good medical practice and in palliative care it, is essential [32]. Palliative care, which has historic roots in end-of-life and hospice care, now has established itself as a medical specialty dedicated to helping patients with serious illness live as well as possible for as long as possible [2].
Supportive care (SC) in cancer is defined as “the prevention and management of the adverse effects of cancer and its treatment and includes management of physical and psychological symptoms and side effects across the continuum of the cancer experience from diagnosis through treatment to post-treatment care [33]. Enhancing rehabilitation, secondary cancer prevention, survivorship, and end-of-life are care integral to supportive care [33]. SC is also helping manage the common side effects of cancer treatment, thereby enhancing the quality of life in patients receiving cancer therapy.
Supportive care is a necessary service for those with cancer to meet their physical, emotional, social, psychological, informational, spiritual, and practical needs during the diagnostic, treatment, and follow-up [34, 35], encompassing issues with survivorship, palliative care, and bereavement [35]. The SC of patients with cancer improves patient’s quality of life, increases the patient’s survival rate and reduces side effects caused by treatment of a disease [1].
Studies have shown that patients and providers have a more favorable impression of the term “supportive care” than “palliative care.” As a result of tremendous advances in the treatment of early and advanced stages, more patients live with a diagnosis of cancer for longer periods of time. Despite improvements in cancer care, however, many patients continue to experience side effects from both their disease and treatment [2].
Both “Palliative care” and “Supportive care” can be given at any point during a person’s illness to help them feel more comfortable [15].
PC and SC both work together as a team that focuses on quality of life and holistic services to patients and their family members. Abundant data now demonstrate that Palliative and Supportive care is beneficial to patients and their families and should be more incorporated into cancer care. In particular, patients with advanced cancer have to deal with many problems during the progression of the disease such as pain, fatigue, energy depletion, and loss of appetite, along with physical symptoms of cancer itself. In addition, cancer patients have a variety of psychological symptoms such as being suggestive anxiety, depression, and sleep disorders [34].
Anderson who is a Texas University physician found that the term “palliative care” was perceived as more distressing and as reducing hope for patients and families. They preferred the name “supportive care” and stated that they would be more likely to refer patients to a service named “supportive care” [21]. After the institution changed the name of both inpatient and outpatient services from “palliative care” to “supportive care” in 2007, they found a 41% increase in consults.
In addition, registration of outpatient palliative care services decreased from 13.2 months to 9.2 months, indicating that patients were being seen earlier in the disease process [36]. Researchers from the University of Pittsburgh interviewed patients with advanced cancer and found that patients had a more favorable impression of the term “supportive care” than “palliative care” [37]. The fields of “supportive care” and “palliative care” in oncology emerged from separate patient needs, have since evolved and are now intertwined. Supportive care arose specifically to combat toxicities of cancer treatment [2].
No significant difference was found between specialists who perceived the terms “palliative care” and “supportive care” [38].
3.2 Health care professional’s attitudes towards cancer patients
Groot et al., [39] determined three-common barriers to perceiving palliative care services including:
Barriers relating to knowledge, skills.
Barriers concerning communication and collaboration teamwork.
Barriers related to the organization of care.
In Gibbs et al., [40] determined common barriers including lack of adequately trained palliative care physicians, nurses, and social workers; lack of knowledge among patients and families, and lack of training opportunities for existing healthcare team members, all of which add to implementation difficulties [41].
Cultural, ethnic, and religious beliefs help to shape people’s attitude towards and dying [42]. Cancer patients have physical (physical symptoms), social (social isolation), functional (activity), spiritual (spiritual abandonment), emotional (sadness, anxiety.) wellbeing needs.
Health care professionals (HCP) have to provide positive attitudes towards different needs during an appropriate time for cancer patients. Additionally, cultural values and beliefs play a role in Health care professional’s attitudes towards palliative care patients [12, 42, 43].
Mc Loughlin KE studied the healthcare professional’s attitudes towards palliative care and caring for dying patients and a number of countries used her studies to measure healthcare professional attitudes including Germany, Denmark, the UK, the Netherlands, Wales, California America [44] and Texas [35].
In 2007 researcher’s evidence showed that the attitude of healthcare professionals can change through the provision of palliative care education [45, 46] and through providing palliative care.
A health care professional has a more positive attitude to care for these people which is also associated with less fear and avoidance of death, anxiety, and stress [9, 22, 23, 24].
Healthcare professionals have different attitudes towards dying patients, for example, oncologists and nurses had more positive attitudes towards PC and caring for dying patients than other healthcare professionals.
Dr. Kathleen found 5 factors influencing health professionals’ attitudes towards palliative care (as shown in Figure 2).
Figure 2.
Factor of attitudes towards palliative care uploaded by Mcloughlin [
Below including
Knowledge of palliative care and case to discuss (knowledge)
Importance of honesty with patient and recognition of benefits of early referral (communication)
Relationships built with patients and family and entry into palliative care
Own thoughts on death and impact of dying patients on thought (culture)
Doctor’s role in palliative care nonreferral to palliative care feelings towards time of death
They reflect more on existential matters such as nurses being more likely to agree that dealing with a dying patient made them more aware of their own feelings about death than doctors did. In general, nurses were more positive than doctors about palliative care.
In one study of the Danish healthcare professionals, nurses were more likely than doctors to agree that palliative care was a rewarding part of their work and was less likely to prefer to leave the care of dying patients to others [47].
However, most of the studies were assessed the attitude towards dying care and knowledge in palliative care for nurses rather than physicians and health care workers.
There is a need to introduce or reinforce the study of palliative care in the curriculum of medical doctors, nurses, pharmacists, and other healthcare workers both at undergraduate and postgraduate levels.
The improvement of attitudes towards palliative care is crucial to enable healthcare professionals who have a role in referring patients to palliative care, to discuss services in a positive way and facilitate a seamless transition to palliative care as well as reduce fear of death and a sense of failure when referring patients to palliative care [48, 49].
The attitude of professionals has been found to be one of the most significant predictors of quality of care which has a positive impact on quality of life at the end of patients’ lives [50]. Negative attitudes create barriers to providing comprehensive patient care [51, 52].
This can cause stress and anxiety for professionals when caring for patients in end-of-life situations, which can affect their own health in the long term [53, 54].
HCP has to know about that:
The relatives of patients with advanced disease are subject to considerable emotional and physical distress, especially if the patient is being managed at home.
Particular attention must be paid to their needs as the success or failure of palliative care may depend on the caregiver’s ability to cope.
Palliative care, whether at home or in a hospital, often succeeds or fails to depend on the care and support system provided by their caring relatives.
McLoughlin (2012) identified the attitude towards palliative care highlighted the need to educate the public on issues concerning palliative care. That was consisted with 2014 Nigeria study showing the gaps in the knowledge of healthcare workers in the area of palliative care [30].
3.3 Health care team’s attitude towards palliative care
Palliative care is a multi-discipline care system that tries to improve the quality of the patient and relieve them by controlling the symptoms related to the disease [55, 56, 57]. Pain and symptom management are the primary focus and psycho-social, spiritual and bereavement support are also provided by multi-discipline teamwork [5]. The basic palliative care teams are made up of physicians and nurses with the support of psychologists and social workers [58]. Additionally include other specialist, nutritionist, pharmacist, chaplain, physiotherapist (as shown in Figure 3).
Figure 3.
Ministry of Health USA uploaded by 2011.
Multi-discipline team provides the patients and their family members with physical, social, and emotional functional support based on the adequate knowledge of PC and favorable attitude towards the end-of-life care.
Positive attitudes towards palliative care are important to enable good communication between primary caregivers and specialist palliative care providers [59].
In Mongolia, they concluded attitude towards inter-professional education in health care professionals needed more practice training for team efficacy and attitude value [60]. Training in palliative care and previous experience related to the end of life has an influence on improving the attitude of health professionals towards the care of patient’s end of life [61].
Health care providers require a good relationship with dying patients and their family members. This is the most difficult process and forming such a relationship is painful as it involves suffering and grieving if the patient passes.
Good communication between all the health care professionals involved in a patient’s care is essential and is fundamental to many aspects of palliative care and good communication with patients and families is also essential [32]. Good palliative care helps open up discussion with patients and their families about important aspects of end-of-life care [62]. Healthcare professionals should consider encourage cancer patients of such positive beliefs and though [63].
3.4 Nurses attitude towards palliative care
The palliative care nurses are expected to participant in the multidiscipline team coordinating for patients, but they need structured preparation to feel knowledgeable and comfortable so they can engage in conversations related to palliative care [41]. In 2022 Ethiopian researchers made Conceptual framework on factors associated with nurses’ attitude towards nursing profession. Four different factors affecting nurses’ attitude towards professional that are socio-demographic factors, organizational related factors, social supporting factors and health professional related factors [64]. Standards of oncology nursing education highlight the need to represent the scope of teaching in all phases of cancer care, including prevention, early detection, rehabilitation, survivorship, and supportive care [41].
Many studies reported a significant correlation between the level of knowledge and attitudes towards palliative care. This is highlighted that as a participants’ level of knowledge increased, attitude became more positive either setting in hospitals such as in Lebanon India, Ethiopia, and Saudi Arabia primary care settings such as in Thailand. It is a part of human nature that the degree and complexity of knowledge affect their attitudes and in turn their behavior.
Nurses as well as other health care workers often feel unprepared for their tasks in palliative care and are in much need of more expertise in the field of pain and symptom management, communication, and dealing with ethical dilemmas [65].
Nurses are another key group with widely differing attitudes towards palliative care [55]. Nurses working in older people’s care settings such as community hospitals and nursing homes are ideally placed to deliver palliative care [18].
The attitudes of nurses, who are frequently confronted with the phenomenon of death during the day, towards providing services to patients whose death is approaching are important for the quality of the care provided. The attitudes of nurses towards dying patients may vary based on their cultural structure, religious thought, social environment, family structure, the technology used in their unit, communication methods, palliative care training, and previous experience of encountering death [13, 55].
Nurses play an important role in the end-of-life care in attitudes of practices because they are more in direct contact with dying patients and spend more time with patients and their family members than other health care professionals. Additionally, nurse providers nursing problem such as pain, breathing difficulties, nausea, vomiting, and fatigue occurring in when patients need essential clinical care [55].
In1991 Degner et al. [1] determined nursing behavior in care for dying people is responding during the death scene, providing comfort, responding to anger, enhancing personal growth, responding to colleagues, enhancing quality of life during dying, and responding to the family.
3.5 Undergraduate student attitude towards palliative care
Palliative care (PC) education for medical students is very important. Because studies on medical students found that it is stressful dealing with end-of-life patients and coping when discussing bad news and encountering relatives’ grief and fear of death. In recent years, medical school faculty have focused on disseminating misconceptions and fears as well as developing positive attitudes towards students’ future role in providing PC [66, 67]. Although generally linked to education level and clinical learning, student attitude towards EOL care seem to have a wider range of influences, particularly cultural [68].
Medical students who experienced a patient’s death during practice reported significantly more positive attitudes and clinical experience with EOL care was a significant predictor of attitudes in some of the studies taken in Mongolia (2021), Italy (2021), and Indonesia (2020).
Bassah et al. [69] concluded in their review on end-of-life attitudes in nursing students that little time is usually devoted to palliative care education or that it is often included in order specialized nursing courses [9]. The education on end-of-life (EOL) care as a portion of PC is very important for physicians, nurses and health care professionals should be prepared to provide quality EOL care [70]. Furthermore, medical education should prepare future students to meet increased PC about awareness and attitudes needs [71]. Medical education on PC in Asian countries could be improved by students’ education from the European Association for Palliative Care or the End-of-Life Nursing Education Consortium.
Moreover, nursing educators could improve their capacity to teach PC courses by attending train-the-trainer sessions and nursing schools could change their curricula to include mandatory PC courses or integrate basic PC education into their curricula. However, teaching strategies may be important in improving the quality of PC education [10].
4. Public attitude towards cancer
4.1 Public impact of attitudes and feelings on cancer
In spite of improving cancer survival rate, decreasing negative attitudes and myths about cancer [72] the thought of impending death [73, 74], social difficulties, and feeling isolated [63] are still around. Cancer survivors need prime support from people close to them to successfully cope with their diagnosis and treatment as well as continual support to improve their quality of life after treatment [75]. Additionally, government and non-government organizations should act to provide a more supportive environment [63, 72], and promote community awareness and intervention activities to enable access to community, social, and individual units for the social reintegration of cancer survivors [76]. In Korean studies from 2012 about public attitudes towards cancer such as cancer stigma, cancer disparities, and stereotypes of cancer. Looking at results of public attitude 58.5% think it is impossible to treat cancer regardless of advanced technology, 71.8% think people with cancer are unable to make contributions to society, and 23.5% of people would avoid working with persons who have cancer [72]. Furthermore in Oman’s public study 63% said they faced difficulties in marriage.
In 2007–2011, LIVESTRONG implemented a global cancer research study planned to give people who had a cancer a chance to share their cancer experiences and their view on the cancer problem that is caused by stigma and silence. They analyzed media coverage, public opinion surveys, and semi-structured interviews from Argentina, Brazil, China, France, India, Italy, Japan, Mexico, Russia, and South Africa [77]. Looking at the results, there has to be a positive change for cancer stigma, to improve cancer awareness, promote communication between cancer patients to share cancer experiences, and the education system including cancer awareness such as cancer prevention, early detection, tobacco use, nutrition [77]. Subsidiary also has to have positive change for disparities of cancer and cancer stereotypes [73].
Kathryn conducted a qualitative study on public perception of cancer, a balance of positive and negative beliefs, and concluded that; People appear to be “in two minds” about cancer. A rapid, intuitive sense of dread and imminent death coexist with a deliberative, rational recognition that cancer can be a manageable, or even curable, disease. Recognizing cancer’s public image could help in the design of effective cancer control messages [74].
Negative attitudes formed from lifestyle and cultural factors, lack of education, religion, living in rural areas, smokers [75], low monthly income [76], misinformation about cancer screening, lack of health-seeking behaviors [73] and lack of rehabilitation during and after treatment. Patients with a negative attitude about cancer are affected by their quality of life, recovery from cancer, time of treatment, and adequate support from the workplace and society.
Discriminatory behavior towards cancer may isolate patients from their community, complicate returning to work after treatment, and have unfavorable physical and mental health consequences for cancer survivors [73]. Public education should also be focused on myths about cancer, such as the impossibility of recovery, and fear of the disease. In addition, people living with cancer should be encouraged to share their experiences with other people in society [73].
Morse Life Hospice studied people’s beliefs and attitudes towards end-of-life care. The top three of awareness included huge support of medical marijuana, opinions on religion, and overall understanding of hospice care. The results show what the public wants and help identifies opportunities to increase awareness in the greater community. The study found that 87% of Americans support the use of medical marijuana as a treatment and believe it is important to have access to a religious leader of their faith for spiritual guidance during their hospice care (72%) [78]. An increasing number of cancer prevention campaigns supported by well-established theories about healthy behaviors have improved public health communication, leading to increased public awareness about the lifestyle risk factors related to cancer.
A positive attitude has also been linked to strong spirituality, religious beliefs, and a keen interest in cancer.
How to improve public role in supporting cancer patients.
(What information do they need to know)
Understanding your diagnoses (what is cancer, how cancer is diagnosed, how to advance, how to cope, how do I talk to people about having cancer, etc.)
Understanding your Treatment and side effects (preparing for and getting treatment, learning about treatment, dealing with side effects, more information, and resources)
Survivorship communication (during and after treatment, cancer survivor course, attending cancer groups, staying active, healthy during and after treatment, and sharing cancer experiences with the same diagnosis person)
Learning and forming positive attitudes towards cancer, ignoring feelings such as sadness, distress, depression, fear, and anxiety
5. Conclusions
Attitude is an essential role in palliative care and supportive care for cancer patients. Cancer patients and their family members need a different attitude from other palliative care patients. Especially positive attitude towards cancer patients to improve their quality of life in aspects such as physically, emotionally, spiritually, socially and help them live as long as possible. There are important roles in attitude such as culture, beliefs, and thoughts but attitude can be changed and can be learned by knowledge, and practice. HCP who work within the PC and SC field have to be mentally prepared from when they are students for high knowledge and positive attitude and ability practice.
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