**2.1 Definitions**

Defining the QoL is challenging and many approaches based on human needs, subjective well-being, expectations and phenomenal viewpoints exists [15]. The available definitions of QoL that are useful in health care can be grouped into five categories:

**59**

*The Quality of Life of the Patients Under Palliative Care: The Features of Appropriate…*

As early as in 1949, Karnofsky outlined the necessity of assessment of patients' subjective improvement in terms of mood and attitude, general well-being and activity, appetite and alleviation of distressing symptoms such as pain, weakness and dyspnea in addition to performance status, length of remission and prolongation of life during the evaluation of new drugs in cancer chemotherapy and high lightened the importance of psycho-social and QoL variables in molecule development. In contemporary terms, these subjective improvement criteria can be considered as QoL measurements and can be considered one of the first description on QoL in health care [17]. The alternative approach is with a view that individuals are the centre point to judge their own experiences and referred to as subjective QoL of subjective well-being (SWB) [18]. The subjective approach defines QoL as the congruence between aspirations and accomplishments, as perceived by the person and measures of life satisfaction, happiness, and positive and negative emotions falling in this category of subjective well-being [19]. These approaches direct to the necessity of a patient-centered approach for the evaluation of quality of life in the health care system. Since the introduction of the term "quality of life" in the medical literature in the 1960s, a number of researches have been happening, especially

Based on a review, Aaronson [20] suggested two common threads in the struc-

1.Such measures tend to reflect a multidimensional conceptual approach. The following health dimensions are frequently incorporated to a greater or lesser

a.Physical health with variables such as somatic sensations, disease symptoms,

b.Mental health ranging from a positive sense of well-being to non-pathological

c.Social health including qualitative and quantitative assessment of community

forms of psychological distress to diagnosable psychiatric disorders.

d.Functional health which includes both physical functioning in terms of self-care, mobility and physical activity as well as social role functioning in

Beyond these dimensions, other variables specific to a given disease may be incorporated, for example, quality of life evaluations in breast cancer will often include measures of sexual activities and body image. Another example studies in rheumatoid arthritis may include expanded assessment of joint mobility and pain.

2.The patient focused approach is primarily reliance on the subjective judgment of the patient themselves, rather than on observations of physicians, nurses, family members or other third parties. Although this process adds complexity to the data collection, considering the manner in which this approach

ture and content of measures that carry the quality of life label.

*DOI: http://dx.doi.org/10.5772/intechopen.85161*

3.Achievement of personal goals

4.Social utility and

5.Natural capacity [16].

in patients with malignancy.

degree in assessment of QoL.

contacts and interactions

relation to family and work

and treatment related complications.


*The Quality of Life of the Patients Under Palliative Care: The Features of Appropriate… DOI: http://dx.doi.org/10.5772/intechopen.85161*


*Palliative Care*

objectives of:

**2.1 Definitions**

categories:

1.Normal life

2.Happiness/satisfaction

patients under palliative care

QoL in these patients.

**under early palliative care**

of the quality of life of patients with chronic disease such as malignancy [4]. The primary goal of palliative care is the achievement of the best possible quality of life for the patients and their families and role extends to support on bereavement, if necessary. The term 'care' underpinned by the concept of total pain, defined as including not only physical symptoms but also mental distress and social or spiritual problems [5]. This concept of palliative care points to the need of holistic approach including symptom control for the management of the patients with terminal illness. Based on the above definition by WHO, the primary aim of palliative medicine is to prevent, treat the symptoms of patients with non-curable diseases as total care and to

The evaluation of QoL of patients in Palliative Care is an important procedure in the identification of a patient's overall condition as well as in the evaluation of the quality of service provided [6]. In patient's perspective, the following aspects such as physical abilities, personal autonomy, emotional state, socializing, spirituality, cognition, health care provision and preparation for death are important factors of quality of life in people with a life-limiting illness receiving palliative care [7] and to be considered during the assessment of quality of life in these patient cohort. The occurrence of incurable diseases can cause an enormous challenge to the patient, their family as well as medical professionals, affecting the QoL of patients in many ways [8]. With key components of systematic symptom assessment, pain control and other symptom relief, psychosocial support and family support, it is evident that early interdisciplinary palliative care and care givers' support help the patient to achieve effective symptom control and better quality in life [9]. However, usual practice to seek palliative care service is still limited to the terminal phase of illness. A coherent and empathetic communication of health professionals with the patient and their family has a major role in adopting patients' and their families' readiness for palliative care at the time of or shortly after diagnosis of incurable life-threatening illness [10–14]. In this context, this chapter highlights the facts with the primary

1.To explain definitions and the variables for the terms "quality of life", and "Health Related Quality of Life (HRQoL)" in the concept of "Health"

2.To suggest appropriate research tools for the assessment of QoL and HRQoL in

3.To describe the influence of palliative care medicine in the improvement of

**2. Definitions and the variables for the assessment of QoL of patients** 

Defining the QoL is challenging and many approaches based on human needs, subjective well-being, expectations and phenomenal viewpoints exists [15]. The available definitions of QoL that are useful in health care can be grouped into five

improve the quality of life (QoL) of the patient and their families.

**58**

5.Natural capacity [16].

As early as in 1949, Karnofsky outlined the necessity of assessment of patients' subjective improvement in terms of mood and attitude, general well-being and activity, appetite and alleviation of distressing symptoms such as pain, weakness and dyspnea in addition to performance status, length of remission and prolongation of life during the evaluation of new drugs in cancer chemotherapy and high lightened the importance of psycho-social and QoL variables in molecule development. In contemporary terms, these subjective improvement criteria can be considered as QoL measurements and can be considered one of the first description on QoL in health care [17]. The alternative approach is with a view that individuals are the centre point to judge their own experiences and referred to as subjective QoL of subjective well-being (SWB) [18]. The subjective approach defines QoL as the congruence between aspirations and accomplishments, as perceived by the person and measures of life satisfaction, happiness, and positive and negative emotions falling in this category of subjective well-being [19]. These approaches direct to the necessity of a patient-centered approach for the evaluation of quality of life in the health care system. Since the introduction of the term "quality of life" in the medical literature in the 1960s, a number of researches have been happening, especially in patients with malignancy.

Based on a review, Aaronson [20] suggested two common threads in the structure and content of measures that carry the quality of life label.

	- a.Physical health with variables such as somatic sensations, disease symptoms, and treatment related complications.
	- b.Mental health ranging from a positive sense of well-being to non-pathological forms of psychological distress to diagnosable psychiatric disorders.
	- c.Social health including qualitative and quantitative assessment of community contacts and interactions
	- d.Functional health which includes both physical functioning in terms of self-care, mobility and physical activity as well as social role functioning in relation to family and work

Beyond these dimensions, other variables specific to a given disease may be incorporated, for example, quality of life evaluations in breast cancer will often include measures of sexual activities and body image. Another example studies in rheumatoid arthritis may include expanded assessment of joint mobility and pain.

2.The patient focused approach is primarily reliance on the subjective judgment of the patient themselves, rather than on observations of physicians, nurses, family members or other third parties. Although this process adds complexity to the data collection, considering the manner in which this approach

addresses the psychosocial factors surrounding disease and treatment, it is generally considered as the most appropriate.

This concept on QoL is supported by Ware [21] who suggested that routine assessment of a fairly broad, comprehensive set of psychosocial variables may often be most appropriate given our limited knowledge of the impact of chronic disease on everyday functioning, and of the psychosocial tradeoff associated with alternative treatments. Marcel [17] highlighted the importance of having a definition of QoL that covers the topic of research. Alternatively, he suggested getting umbrella coverage for any aspect of living with illness or disability to the term 'quality of life' in a QoL article. He advised the reader to focus on the variables which are actually measured in the study rather than the terms used.

In 1993, the WHO Quality of Life Group clarified the definition of the term Quality of Life as 'an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. This broad concept on QoL is influenced by the individual's physical health, psychological state, level of independence, social relationships and their relationships to salient features of their environment in a complex manner [22]. However, at this point, it is important to consider the fact that the term QoL does not have same meaning to every person [23] and it is suggested that there are some aspects of QoL that are universal, where as some of them would be important only to the individual [24]. The interaction between these aspects-general and individual- will also vary from individual to individuals and their correlation is not static and moreover, changes overtime in response to life circumstances such as life-threatening or severity of illness [25]. Based on the above concepts and hypothesis, a number of definitions for QoL exist and many of them focus on subjective judgments. In view of this, a number of researchers have argued for the importance of inclusion of objective factors in the assessment of QoL [15]. Including all these variables in to consideration, QoL has been defined as "an overall general well-being which includes the objective assessments and subjective measurements of physical, material, social and emotional well-being together with the extent of personal development and purposeful activity, all weighted by a personal set of values" [26].

The term "Health- Related Quality of Life" appeared in published articles by the mid-1980s and it was defined as a subset of QoL, relating only to the health domain of that existence [15]. However, in 1994, Gill and Feinstein reviewed 75 articles titled with word quality of life and concluded that none of the article distinguished overall QoL from the HRQoL [27]. To reverse these situations, many theorists, researchers, organizations and the consensus groups have proposed definitions for QoL and HRQoL [17]. There are at least four definitions for HRQoL can be found in literature [15]. In 2010 Hays and Reeve defined HRQoL in terms of individual's functioning life and perception of well-being based on physical, mental and social domains of health [28]. Here functioning life represents the individual's ability to carry out some pre-defined activities, [28, 29] while wellbeing refers to an individual's subjective feelings [28].

In another article, Torrance WH, correlates QoL and HRQoL and quotes as "quality of life is an all-inclusive concept incorporating all factors that impact upon an individual's life. The Health Related QoL includes only those factors that are part of an individual's health". Non-health aspects of QoL are not included in HRQoL, for example economic and political factors [30]. Focusing on aspects of QoL affected by disease factors, in 1995 Ebrahim S provided a definition of HRQoL as "those aspects of self-perceived wellbeing that are related to or affected by the presence of disease or treatment" [31]. In another definition of HRQoL, Gold MR et al. focuses on the value of health and refer HRQoL to "the values assigned to different health states" [32].

**61**

in to its considerations.

*The Quality of Life of the Patients Under Palliative Care: The Features of Appropriate…*

**2.3 The importance of HRQoL questionnaires measure in palliative care**

As stated above, WHO defines palliative care as "an approach that improves the QoL of patients and their families facing the problems associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual" [36]. Since the patients under palliative care with chronic illness or non-curable disease, most of the measures in palliatives address for the symptom control and help the patients and their family to improve the quality of life physically, psycho-socially and spiritually. Based on the concept of above definition, the HRQoL questionnaire, such as the Personal Wellbeing Index (PWI) asks about satisfaction with: the standard of living, health, achievement, personal relationships, personal safety, community connectedness, and future security [37] in its assessment of variables. All these variables are more or less likely to be affected by ill health status of the individual. Because of this correlation between the domains and patient's perception on health status, it is recommendable that the QoL questionnaires could therefore be to measure self-perceived health status, unless the connection between measuring functioning and well-being and QoL is justified [15]. The domains of the two most validated assessment tools such as SF-6D and the EQ-5D would fit to the WHO health definition, although the questions range across the WHO classification scheme of impairment, activity limitation, and participation restriction. Yet, there have not been many explicit justifications for differentiating HRQoL from health status [15]. However, neither

It is acknowledged that "health is only one dimension of quality of life" [16]. Satisfaction with life is influenced by health, but health status only explains a small part of life satisfaction outcomes [33]. Therefore we can consider the Health and QoL as distinct concepts [15]. As some of definitions of HRQoL indicate to health status of person and others resembles QoL, differentiation between HRQoL and both health status and QoL is more problematic [15]. Especially when considering, the first two definitions of HRQoL given above do not seem to add much to the concept of health. If HRQoL is considered as functioning and wellbeing in physical, psychological, and social domains, then we need to take HRQoL as a particular type of description of health, in view of the WHO definition of health. HRQoL describes health using functioning and well-being rather than, for example, in terms of clinical symptoms or biological variables [29]. It is thus should be considered as a type of health measure, but not a type of QoL measure. Similarly, if HRQoL is the health aspect of QoL then HRQoL should be considered as same as health condition. Particularly, the first two definitions of HRQoL, which included here do not distinguish HRQoL from that of health [15]. The third definition of HRQoL highlights the aspects of QoL that are indirectly influenced by health (e.g., health affects income and hence housing, education and so forth) [34]. Perhaps more reasonable is the variant of this definition, where HRQoL is the aspects of QoL most affected by ill health [15]. Qualitative research has observed that existence of a wide variety of non-health factors those are important to participants for evaluating their health states [35]. If the research participant's preferences are based on how health affects the QoL and if respondents estimate the effect of health status on QoL correctly then the utility of a health state could be referred to as health-related quality of life or more accurate term of 'health-adjusted quality of life' [15]. In summary, the above definitions of HRQoL reflect the values of definitions of both QoL and health

**2.2 Difference between the terms: Health, QoL and HRQoL**

*DOI: http://dx.doi.org/10.5772/intechopen.85161*

*The Quality of Life of the Patients Under Palliative Care: The Features of Appropriate… DOI: http://dx.doi.org/10.5772/intechopen.85161*

#### **2.2 Difference between the terms: Health, QoL and HRQoL**

*Palliative Care*

addresses the psychosocial factors surrounding disease and treatment, it is

This concept on QoL is supported by Ware [21] who suggested that routine assessment of a fairly broad, comprehensive set of psychosocial variables may often be most appropriate given our limited knowledge of the impact of chronic disease on everyday functioning, and of the psychosocial tradeoff associated with alternative treatments. Marcel [17] highlighted the importance of having a definition of QoL that covers the topic of research. Alternatively, he suggested getting umbrella coverage for any aspect of living with illness or disability to the term 'quality of life' in a QoL article. He advised the reader to focus on the variables which are actually

In 1993, the WHO Quality of Life Group clarified the definition of the term Quality of Life as 'an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. This broad concept on QoL is influenced by the individual's physical health, psychological state, level of independence, social relationships and their relationships to salient features of their environment in a complex manner [22]. However, at this point, it is important to consider the fact that the term QoL does not have same meaning to every person [23] and it is suggested that there are some aspects of QoL that are universal, where as some of them would be important only to the individual [24]. The interaction between these aspects-general and individual- will also vary from individual to individuals and their correlation is not static and moreover, changes overtime in response to life circumstances such as life-threatening or severity of illness [25]. Based on the above concepts and hypothesis, a number of definitions for QoL exist and many of them focus on subjective judgments. In view of this, a number of researchers have argued for the importance of inclusion of objective factors in the assessment of QoL [15]. Including all these variables in to consideration, QoL has been defined as "an overall general well-being which includes the objective assessments and subjective measurements of physical, material, social and emotional well-being together with the extent of personal development and purposeful activity, all weighted by a personal set of values" [26]. The term "Health- Related Quality of Life" appeared in published articles by the mid-1980s and it was defined as a subset of QoL, relating only to the health domain of that existence [15]. However, in 1994, Gill and Feinstein reviewed 75 articles titled with word quality of life and concluded that none of the article distinguished overall QoL from the HRQoL [27]. To reverse these situations, many theorists, researchers, organizations and the consensus groups have proposed definitions for QoL and HRQoL [17]. There are at least four definitions for HRQoL can be found in literature [15]. In 2010 Hays and Reeve defined HRQoL in terms of individual's functioning life and perception of well-being based on physical, mental and social domains of health [28]. Here functioning life represents the individual's ability to carry out some pre-defined activities, [28, 29] while wellbeing refers to an indi-

In another article, Torrance WH, correlates QoL and HRQoL and quotes as "quality of life is an all-inclusive concept incorporating all factors that impact upon an individual's life. The Health Related QoL includes only those factors that are part of an individual's health". Non-health aspects of QoL are not included in HRQoL, for example economic and political factors [30]. Focusing on aspects of QoL affected by disease factors, in 1995 Ebrahim S provided a definition of HRQoL as "those aspects of self-perceived wellbeing that are related to or affected by the presence of disease or treatment" [31]. In another definition of HRQoL, Gold MR et al. focuses on the value of health and refer HRQoL to "the values assigned to different health states" [32].

generally considered as the most appropriate.

measured in the study rather than the terms used.

**60**

vidual's subjective feelings [28].

It is acknowledged that "health is only one dimension of quality of life" [16]. Satisfaction with life is influenced by health, but health status only explains a small part of life satisfaction outcomes [33]. Therefore we can consider the Health and QoL as distinct concepts [15]. As some of definitions of HRQoL indicate to health status of person and others resembles QoL, differentiation between HRQoL and both health status and QoL is more problematic [15]. Especially when considering, the first two definitions of HRQoL given above do not seem to add much to the concept of health. If HRQoL is considered as functioning and wellbeing in physical, psychological, and social domains, then we need to take HRQoL as a particular type of description of health, in view of the WHO definition of health. HRQoL describes health using functioning and well-being rather than, for example, in terms of clinical symptoms or biological variables [29]. It is thus should be considered as a type of health measure, but not a type of QoL measure. Similarly, if HRQoL is the health aspect of QoL then HRQoL should be considered as same as health condition. Particularly, the first two definitions of HRQoL, which included here do not distinguish HRQoL from that of health [15]. The third definition of HRQoL highlights the aspects of QoL that are indirectly influenced by health (e.g., health affects income and hence housing, education and so forth) [34]. Perhaps more reasonable is the variant of this definition, where HRQoL is the aspects of QoL most affected by ill health [15]. Qualitative research has observed that existence of a wide variety of non-health factors those are important to participants for evaluating their health states [35]. If the research participant's preferences are based on how health affects the QoL and if respondents estimate the effect of health status on QoL correctly then the utility of a health state could be referred to as health-related quality of life or more accurate term of 'health-adjusted quality of life' [15]. In summary, the above definitions of HRQoL reflect the values of definitions of both QoL and health in to its considerations.

#### **2.3 The importance of HRQoL questionnaires measure in palliative care**

As stated above, WHO defines palliative care as "an approach that improves the QoL of patients and their families facing the problems associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual" [36]. Since the patients under palliative care with chronic illness or non-curable disease, most of the measures in palliatives address for the symptom control and help the patients and their family to improve the quality of life physically, psycho-socially and spiritually. Based on the concept of above definition, the HRQoL questionnaire, such as the Personal Wellbeing Index (PWI) asks about satisfaction with: the standard of living, health, achievement, personal relationships, personal safety, community connectedness, and future security [37] in its assessment of variables. All these variables are more or less likely to be affected by ill health status of the individual. Because of this correlation between the domains and patient's perception on health status, it is recommendable that the QoL questionnaires could therefore be to measure self-perceived health status, unless the connection between measuring functioning and well-being and QoL is justified [15]. The domains of the two most validated assessment tools such as SF-6D and the EQ-5D would fit to the WHO health definition, although the questions range across the WHO classification scheme of impairment, activity limitation, and participation restriction. Yet, there have not been many explicit justifications for differentiating HRQoL from health status [15]. However, neither

the EQ-5D nor the SF-6D contains patient valuation. Measures of HRQoL describe health status in terms of functioning health and wellbeing of individual than clinical parameters, and with a broad description of health condition than the measures of QoL. It is therefore more justified to classify typical HRQoL measures as measures of self-perceived health status [15]. So the ideal questionnaire should cover the concept of WHO definition along with patient self-evaluation on all aspect of QoL measures in relation his or her present health condition.

Spitzer et al. introduced a concise QL-index for measuring quality of life in cancer patients in 1981. This QoL instrument was based on the assessment of sociopersonal variables and included physical, social, and emotional functions; attitude towards illness, personal features of patient's daily lives, including family interactions and the cost of illness. The considered items measures activities, self-care, general health, social support and out-look on life [38].

The findings in a systematic review by Nicola et al. [7] in 2016, with an objective to identify the aspects of QoL, which are important from the perspective of palliative care patients, suggests the following aspects as important for the quality of life in people with a life-limiting illness receiving palliative care on their own perspective: physical abilities, personal autonomy, emotional state, socializing, spirituality, cognition, health care provision and preparation for death. He also suggested a refinement of existing QoL measures in palliative care setting to improve the sensitivity and concluded with an opinion of generic preference based, HRQoL measures commonly used to inform public funding decisions do not include the domains such as cognition, emotional, physical, preparatory, social and the spirituality. Because of the existence of this mismatch between the domains available in assessment tools and the reality on the context of patient considerations, the assessment with the tools may fail to inform adequately on the money decisions about palliative care. Because of these mismatching facts, Carr and Higginson suggested for a patient-centered outcome measures (PCOMs), which capture the health status and well-being form the patient's perspective and focus on concern important to patient [24]. This point supported by Etkind et al., in a systematic review on the impact of PCOMs on processes and outcomes of palliative care, concluding that these type of measures raise the awareness of unmet need, improve recognition of symptoms and communication about QoL and benefit patient's emotional and psychological quality of life [39]. In short, during the selection of assessment tools for the evaluation of quality of life in patients under palliative care, it is recommendable for a patient centered outcome measuring questionnaire which correlate with definition of QoL.

## **3. The improvement of QOL of patients and their families under early palliative care**

During early decades, palliative care services were initiated to provide a medical alternative to questionable medical practice regarding the end of life period: abandonment, euthanasia and inappropriate aggressive therapy and palliative care are usually offered late. Recently WHO recommends palliative care introduction as early as possible in the course of illness to increase the quality of life of patients and to positively influence the course of illness, in conjunction with other therapies, which are intended to prolong the life; such as chemotherapy or radiotherapy [40]. Palliative care is a multi-disciplinary approach that aims to improve the quality of life of all patients including both children and elderly and their families who are facing the challenges associated with life-threatening illness. These objectives of PC are achieved through the prevention and relief of sufferings, by means of early identification, assessment and treatment of pain and other physical, psychosocial

**63**

any patients with metastatic cancer.

*The Quality of Life of the Patients Under Palliative Care: The Features of Appropriate…*

**3.1 The evidences supporting the early introduction of palliative care**

sis, at which time further decline in quality of life is very common [46].

There are evidences that under early palliative care patient and family members are better informed on disease symptoms and severity and treatment directives and are provided with more time for end of life decisions, which promotes the experience of higher self-efficacy and sense of control in decisions with respect to the individual values [47]. It is proved that, the effective use of palliative care in linked with less aggressive cancer treatment, such as reduced use of questionable chemotherapeutic agents and treatments and this practice will de-escalate treatment intensity in final, irreversible health conditions [48]. The above observations is also supported by Temel et al. in 2010 [49] with their findings in a randomized trial with participation of 151 patients of newly diagnosed metastatic non-small cell carcinoma. The primary objective of this study was improvement in quality of life and overall survival as secondary objective. In their study, it has been observed that the patients in group of early palliative care service along with standard oncologic treatment showed significant improvement in quality of life and in mood, than the patients in the group of standard oncology treatment only. In addition, the patients with early palliative care led a significantly longer survival (*p* = 0.02), despite less aggressive end of life care. In view of the observations in this randomized controlled trail, American Society of Clinical Oncology supported the combined use standard oncology treatment along with palliative care in the course of illness for

The early integration of palliative care service for the treatment of cancer patients especially with metastasis is also supported by, Pirl et al. [50] in 2012, with the observations in their trial. It claimed that early introduction of palliative care improved the result of medical comorbidity management, including depression and helps in the discontinuation of inappropriate and possibly detrimental cancer treatment at the end of life. Recently, Hutt et al. [51] conducted a phase III randomized trial in 2018, with an aim to test the hypothesis that the use of early palliative care provides greater clinical benefits than standard practice for a population of patients with metastatic upper gastro-intestinal cancers. The primary objective in this study was overall survival. The authors concluded with expectation of integration of earlier palliative care in oncologic care of patients with metastatic gastro-intestinal cancer.

of distressing clinical complications in these patient group.

and spiritual distress [40]. The WHO recommendations also support the use of necessary laboratory investigations for the better understanding and management

The role of good doctor-patient communication is important in acceptance of illness, deciding the treatment options. With a focused intensified doctor-patient communication, early palliative care may lead to higher social support and increase the likelihood of the acceptance of the diagnosis and illness severity. This in turn improves the patient's openness to symptom control and psycho-social interventions, and thereby to reduce the disease related distress. The reduced distress itself associated with improved quality of life and consistently promotes survival [41–43]. Early palliative care intends to outline realistic and attainable goals of treatment and to facilitate patient's choices by providing adequate information and assessment of his or her values and preferences with regard to advance care planning [44, 45]. In a systematic review of a small number of trials, Haun MW et al. found that early palliative care interventions may have more beneficial effects on quality of life and symptom intensity among patients with advanced cancer than among those given usual/standard cancer care alone. Apart from small effect size of the studies, they observed the findings may be clinically relevant at an advanced disease stage with limited progno-

*DOI: http://dx.doi.org/10.5772/intechopen.85161*

and spiritual distress [40]. The WHO recommendations also support the use of necessary laboratory investigations for the better understanding and management of distressing clinical complications in these patient group.

### **3.1 The evidences supporting the early introduction of palliative care**

The role of good doctor-patient communication is important in acceptance of illness, deciding the treatment options. With a focused intensified doctor-patient communication, early palliative care may lead to higher social support and increase the likelihood of the acceptance of the diagnosis and illness severity. This in turn improves the patient's openness to symptom control and psycho-social interventions, and thereby to reduce the disease related distress. The reduced distress itself associated with improved quality of life and consistently promotes survival [41–43]. Early palliative care intends to outline realistic and attainable goals of treatment and to facilitate patient's choices by providing adequate information and assessment of his or her values and preferences with regard to advance care planning [44, 45]. In a systematic review of a small number of trials, Haun MW et al. found that early palliative care interventions may have more beneficial effects on quality of life and symptom intensity among patients with advanced cancer than among those given usual/standard cancer care alone. Apart from small effect size of the studies, they observed the findings may be clinically relevant at an advanced disease stage with limited prognosis, at which time further decline in quality of life is very common [46].

There are evidences that under early palliative care patient and family members are better informed on disease symptoms and severity and treatment directives and are provided with more time for end of life decisions, which promotes the experience of higher self-efficacy and sense of control in decisions with respect to the individual values [47]. It is proved that, the effective use of palliative care in linked with less aggressive cancer treatment, such as reduced use of questionable chemotherapeutic agents and treatments and this practice will de-escalate treatment intensity in final, irreversible health conditions [48]. The above observations is also supported by Temel et al. in 2010 [49] with their findings in a randomized trial with participation of 151 patients of newly diagnosed metastatic non-small cell carcinoma. The primary objective of this study was improvement in quality of life and overall survival as secondary objective. In their study, it has been observed that the patients in group of early palliative care service along with standard oncologic treatment showed significant improvement in quality of life and in mood, than the patients in the group of standard oncology treatment only. In addition, the patients with early palliative care led a significantly longer survival (*p* = 0.02), despite less aggressive end of life care. In view of the observations in this randomized controlled trail, American Society of Clinical Oncology supported the combined use standard oncology treatment along with palliative care in the course of illness for any patients with metastatic cancer.

The early integration of palliative care service for the treatment of cancer patients especially with metastasis is also supported by, Pirl et al. [50] in 2012, with the observations in their trial. It claimed that early introduction of palliative care improved the result of medical comorbidity management, including depression and helps in the discontinuation of inappropriate and possibly detrimental cancer treatment at the end of life. Recently, Hutt et al. [51] conducted a phase III randomized trial in 2018, with an aim to test the hypothesis that the use of early palliative care provides greater clinical benefits than standard practice for a population of patients with metastatic upper gastro-intestinal cancers. The primary objective in this study was overall survival. The authors concluded with expectation of integration of earlier palliative care in oncologic care of patients with metastatic gastro-intestinal cancer.

*Palliative Care*

the EQ-5D nor the SF-6D contains patient valuation. Measures of HRQoL describe health status in terms of functioning health and wellbeing of individual than clinical parameters, and with a broad description of health condition than the measures of QoL. It is therefore more justified to classify typical HRQoL measures as measures of self-perceived health status [15]. So the ideal questionnaire should cover the concept of WHO definition along with patient self-evaluation on all aspect of

Spitzer et al. introduced a concise QL-index for measuring quality of life in cancer patients in 1981. This QoL instrument was based on the assessment of sociopersonal variables and included physical, social, and emotional functions; attitude towards illness, personal features of patient's daily lives, including family interactions and the cost of illness. The considered items measures activities, self-care,

The findings in a systematic review by Nicola et al. [7] in 2016, with an objective to identify the aspects of QoL, which are important from the perspective of palliative care patients, suggests the following aspects as important for the quality of life in people with a life-limiting illness receiving palliative care on their own perspective: physical abilities, personal autonomy, emotional state, socializing, spirituality, cognition, health care provision and preparation for death. He also suggested a refinement of existing QoL measures in palliative care setting to improve the sensitivity and concluded with an opinion of generic preference based, HRQoL measures commonly used to inform public funding decisions do not include the domains such as cognition, emotional, physical, preparatory, social and the spirituality. Because of the existence of this mismatch between the domains available in assessment tools and the reality on the context of patient considerations, the assessment with the tools may fail to inform adequately on the money decisions about palliative care. Because of these mismatching facts, Carr and Higginson suggested for a patient-centered outcome measures (PCOMs), which capture the health status and well-being form the patient's perspective and focus on concern important to patient [24]. This point supported by Etkind et al., in a systematic review on the impact of PCOMs on processes and outcomes of palliative care, concluding that these type of measures raise the awareness of unmet need, improve recognition of symptoms and communication about QoL and benefit patient's emotional and psychological quality of life [39]. In short, during the selection of assessment tools for the evaluation of quality of life in patients under palliative care, it is recommendable for a patient centered outcome measuring questionnaire which correlate with definition of QoL.

**3. The improvement of QOL of patients and their families under early** 

During early decades, palliative care services were initiated to provide a medical alternative to questionable medical practice regarding the end of life period: abandonment, euthanasia and inappropriate aggressive therapy and palliative care are usually offered late. Recently WHO recommends palliative care introduction as early as possible in the course of illness to increase the quality of life of patients and to positively influence the course of illness, in conjunction with other therapies, which are intended to prolong the life; such as chemotherapy or radiotherapy [40]. Palliative care is a multi-disciplinary approach that aims to improve the quality of life of all patients including both children and elderly and their families who are facing the challenges associated with life-threatening illness. These objectives of PC are achieved through the prevention and relief of sufferings, by means of early identification, assessment and treatment of pain and other physical, psychosocial

QoL measures in relation his or her present health condition.

general health, social support and out-look on life [38].

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**palliative care**
