Content Validity of a Conceptual Model of a Palliative Approach

Abstract

Background:

The term “palliative approach” has emerged to connote healthcare activities provided consistent with the philosophy of palliative care, but not limited to specialized care providers or settings. A rigorous understanding of the palliative approach requires a conceptual model, which links the philosophy of palliative care to specific actions of practitioners, and is applicable to patients with any life-threatening illness, at any point on the disease trajectory, and provided by any care provider in any setting. This article proposes a conceptual model asserting that a palliative approach exists when care simultaneously addresses whole-person needs, enhances quality of life, and acknowledges mortality.

Objective:

To test the content validity of the proposed model against definitions of palliative care in existing literature.

Design:

Electronic and manual literature searches identified definitions of palliative care and palliative approach. Two authors independently conducted thematic analysis to assess congruence with the domains of the proposed conceptual model.

Results:

Nineteen definitions were identified. The three domains were represented in the majority: whole-person care (17/19), quality-of-life focus (17/19), and mortality acknowledgement (15/19). Published definitions also included other concepts, but only one of these (family within the unit of care) appeared in more than a few definitions.

Conclusions:

The content validity of the proposed conceptual model is supported by the consistent presence of the three domains in published definitions. This conceptual model bridges philosophical definitions and clinician behavior and has potential to inform broad implementation of a palliative approach, at both clinic and system levels.

Background

The term palliative care is used to describe both the philosophy of care for patients facing life-threatening illness and the specialized services provided by particular healthcare professionals. This dual usage is widely accepted, but can be an obstacle to clear understanding of the system of care for people approaching end of life. Recently, the phrase “palliative approach” has emerged in literature to describe healthcare activities provided in a manner consistent with the philosophy of palliative care,^1,2 irrespective of the training, role, or setting of the healthcare professional. With connotations of activities (not just philosophy) potentially applicable to all care professionals (not just palliative care specialists), the phrase has gained traction.

Despite considerable literature describing palliative care, the term palliative approach is not well defined. One recent review of the term's utilization² describes how a palliative approach is implemented (upstream, adapted, integrated) but does not help nonspecialists understand what it is. A clear definition requires a conceptual model linking the philosophy of palliative care to the specific actions of practitioners. Such a model is necessary to enable us to describe activities consistent with a palliative approach, and recognize the contribution of these activities and providers to the system of care for people with palliative needs.

This article proposes a conceptual model with three core domains (Fig. 1): whole-person care, focus on quality of life, and mortality acknowledgement. A palliative approach exists when care encompasses all domains concurrently. This model, developed by the authors from their general reading of the palliative care literature, is applicable to patients with any life-threatening illness, at any point on the disease trajectory (from diagnosis until death), and can be provided by any healthcare professional (not only palliative care specialists) in any setting. Based on ideas long-held among palliative care practitioners, this model does not introduce new concepts, but links existing ones in a way not previously described.

FIG. 1.

Proposed conceptual model of a palliative approach.

Whole-person care refers to care extending beyond the physical domain, addressing the psychosocial, spiritual, and emotional domains of health.^3–5 It involves understanding and supporting patient's values and beliefs,⁶ and treating the patient and addressing suffering “holistically.”^7–9

Focus on quality of life

A primary goal of palliative care is to optimize patients' quality of life.^10–13 Quality-of-life and quantity-of-life goals may coexist, but a palliative approach will always include a focus on the quality of life.

Mortality acknowledgement describes care informed by proximity to death. Mortality acknowledgement does not imply an exclusive or primary focus on death and dying, but recognition of the fact of mortality and exploration of its impact on priority setting and decision making in a patient's care. Mortality acknowledgement can respect patients' varying desire to discuss mortality-related issues, but it still recognizes their relevance.

While a conceptual model of a palliative approach has not been previously articulated, there are numerous definitions of palliative care. The purpose of this article is to assess the content validity of the proposed model by evaluating the consistency between published definitions of palliative care and the three domains proposed.

Methods

The proposed conceptual model was developed by the authors from their general reading of the palliative care literature. To test the content validity of the model, we searched academic literature for definitions of palliative care and conducted a thematic analysis to assess the concordance of the three domains of the model with the content of these definitions.

Literature search

Literature search methods and results are summarized in Figure 2. Web of Science and CINAHL were searched using terms “palliative care OR palliative approach OR palliative medicine” and “defin* OR conceptualiz*”. Articles were selected from initial title and abstract reviews, and included if written in English and focused on defining palliative care and/or a palliative approach. They were excluded if focused solely on patient or provider understandings, specific populations, or did not provide a definition. Additional definitions were obtained through hand-searching references of identified articles, and from a previously published review.¹⁴

FIG. 2.

Flowchart of literature search for definitions of palliative care.

Definitions of palliative care were extracted from each article and synthesized into a list of distinct definitions organized according to organization or author of origin. Two definitions were excluded at this juncture as they defined solely “specialist palliative care”¹⁵ and palliative care in oncology practices.¹⁶

Thematic analysis

The identified definitions were analyzed to ascertain whether the domains of the proposed model are consistent with them. Each definition was reviewed and broken down into distinct concepts, which were then sorted into four categories: whole-person care, focus on quality of life, mortality acknowledgement, or other. A sample of this method is shown in Figure 3. Whole-person care was defined as care addressing psychosocial, spiritual, emotional, social and/or existential domains. Focus on quality of life was defined as care intended to optimize well-being, comfort, and functional status. Mortality acknowledgement was defined as inclusion of elements related to death, dying, or limited prognosis. “Other” captured concepts that did not clearly fit elsewhere. Two authors independently divided and sorted the concepts. Discrepancies were resolved by consensus.

FIG. 3.

Method of initial definition analysis, demonstrated using a sample definition. Each definition was divided into distinct concepts, which were then sorted into one of the three categories of the proposed conceptual model or an “other” category.

Results

Literature search

The initial search yielded 52 articles focused on the definition or conceptualization of palliative care. Thirty-three did not meet inclusion criteria. Nine additional articles were sourced from a previous systematic review,¹⁴ and two articles from hand-searching references. Extraction and synthesis resulted in a total of 19 definitions (Table 1).

Table 1.

Definitions of Palliative Care, Organized by Organization or Author of Origin

	Definition	Organization or author(s)	Also referenced in (if applicable)
1	Palliative care is the person-centered attention to symptoms, psychological, social, and existential distress in patients with limited prognosis, to optimize the quality of life of patients and their families or close friends. Based on this definition, we propose two further types of palliative care, which reflect the reality of how palliative care is actually delivered: 1. Basic palliative care is the standard of palliative care, which should be provided by all healthcare professionals, in primary or secondary care, within their normal duties to patients with life-limiting disease. 2. Specialized palliative care is a higher standard of palliative care provided at the expert level, by a trained multiprofessional team, who must continually update their skills and knowledge, to manage persisting and more complex problems and to provide specialized educational and practical resources to other nonspecialized members of the primary or secondary care teams.	Ahmedzai et al.¹⁷
2	Palliative Care is comprehensive, specialized care provided by an interdisciplinary team to patients and families living with a life-threatening or severe advanced illness expected to progress toward dying and where care is particularly focused on alleviating suffering and promoting quality of life. Major concerns are pain and symptom management, information sharing and advance care planning, psychosocial and spiritual support, and coordination of care.	American Association of Hospice and Palliative Medicine¹⁸	Meghani²⁶
3	Comprehensive, interdisciplinary care, focusing primarily on promoting quality of life for patients living with a terminal illness and for their families. Key elements for helping the patient and family live as well as possible in the face of life-threatening illness include assuring physical comfort, psychosocial and spiritual support, and provision of coordinated services across various sites of care.	Billings¹⁹
4	Palliative care, and the medical subspecialty of palliative medicine, is specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of palliative care doctors, nurses, social workers, and others who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.	Center for Advancement of Palliative Care²⁰	Buss et al.,³⁶ Gillick,³⁷ and Meghani²⁶
5	Palliative care is the comprehensive management of a patient's physical, psychological, social, spiritual and existential needs. It can be part of the treatment of any person with a serious or life-threatening medical condition for which a patient-centered approach, pain and symptom control, family involvement and compassionate care are needed. Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and the family. Palliative care neither hastens nor postpones death, but rather seeks to relieve suffering and provide comfort, control symptoms and restore functional capacity while remaining sensitive to personal, cultural and religious values, beliefs and practices.	Defining palliative care: Moyers on dying²¹
6	The study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life.	Doyle²²
7	The term “palliative care” implies a personalized form of healthcare. It extends the healthcare professional's mandate beyond the biomedical model to the wider horizon necessary if one is to attend to suffering as well as the biology of disease, caring, as well as curing, quality of life, as well as quantity of life. The patient and family or significant others are taken together as a unit of care in assessment of needs related to illness. The aim of palliative care is to support optimal quality of life and to foster healing—that is a shift in response toward an experience of integrity and wholeness on the continuum of the quality of life.	Mount et al.²³	Hanks³⁸
8	Palliative care: • an approach focusing on relief of pain and other symptoms to the exclusion of curative therapies in persons with life-limiting illness; • The comprehensive management of the physical, psychological, social, spiritual, and existential needs of patients. It is especially suited to the care of people with incurable, progressive illnesses²⁵; • …treatment that enhances comfort and improves the quality of the patient's life. No specific therapy is excluded from consideration (National Hospice Organization, 1993)²⁸; • an equivalent (or euphemism) for hospice, used by Mount to name the hospital unit and comprehensive program in the Royal Victoria Hospital, Montreal, Quebec.	Lamers²⁴
9	Palliative care refers to the comprehensive management of the physical, psychological, social, spiritual, and existential needs of patients. It is especially suited to the care of people with incurable, progressive illnesses. Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. The goal of palliative care is to achieve the best possible quality of life through relief of suffering, control of symptoms, and restoration of functional capacity while remaining sensitive to personal, cultural, and religious values, beliefs, and practices.	Last Acts Task Force on Palliative Care²⁵	Gillick,³⁷ Kuebler, et al.,³⁹ and Lamers²⁴
10	The literature points to four important attributes of the current palliative care concept that were identified: (i) total, active, and individualized patient care, (ii) support for the family, (iii) interdisciplinary teamwork, and (iv) effective communication.	Meghani²⁶
11	Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.	National Consensus Project for Quality Palliative Care²⁷	Cherny,⁴⁰ Gillick,³⁷ Martin,⁴¹ and Meier⁴²
	The following features characterize palliative care philosophy and delivery: • Care is provided and services are coordinated by an interdisciplinary team; • Patients, families, palliative, and nonpalliative healthcare providers collaborate and communicate about care needs; • Services are available concurrently with or independent of curative or life-prolonging care; • Patient and family hopes for peace and dignity are supported through the course of illness, during the dying process, and after death.”
	(Note: This definition was updated in 2013 with the release of the third edition of the Clinical Practice Guidelines)
12	Palliative care extends the principles of hospice care to a broader population that could benefit from receiving this type of care earlier in their illness. No specific therapy is excluded from consideration. An individual's needs must be continually assessed and treatment options should be explored and evaluated in the context of the individual's values and symptoms. Palliative care, ideally, would segue into hospice care as the illness progresses.	National Hospice and Palliative Care Organization²⁸	Batchelor⁴³ and Meghani²⁶
13	Key elements of palliative care, identified using discourse analysis: • Target groups: patient population, timing, family/relatives • Structure: multidisciplinary, 24/7, cross-setting • Tasks: control of symptoms, comprehensive care • Expertise: knowledge, skills, attitudes	Pastrana et al.²⁹
14	Palliative care is active intervention, which has as its goal the achievement of maximum comfort and function of the total patient. While palliation can and should always be an integral part of the entire spectrum of patient care, it stands alone as the care for the patient who has been diagnosed with an irreversibly deteriorating or terminal condition and for whom curative treatment is no longer the goal of care.	Post and Dubler³⁰
15	Palliative medicine is the active comprehensive care of the physical, emotional, psychosocial, and spiritual needs of the patient and the family with the aim of relieving suffering. It starts at the moment of diagnosis of any illness and continues for the duration of the illness. If and when the illness becomes incurable, then palliative care will play the major or the total role.	Palliative Medicine Institute (South Africa) (1998)³¹
16	The study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life.	Doyle et al.³²	Billings¹⁹
17	Palliative care is multidisciplinary and its approach is focused both on the patient and the family. It encompasses the care of the patient and family during the progression to incurable illness, the advanced stages of disease, and the last hours of life. It is based on the integration of medical and other holistic treatments.	Ventafridda³³
18	Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems are paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment. Palliative care: • affirms life and regards death as a normal process; • neither hastens nor postpones death; • provides relief from pain and other distressing symptoms; • integrates the psychological and spiritual aspects of patient care; • offers a support system to help patients live as actively as possible until death; • offers a support system to help the family cope during the patient's illness and in their own bereavement.	World Health Organization³⁴	Allen,⁴⁴ Billings,¹⁹ Browde,³¹ Goodlin,⁴⁵ Lipman,⁴⁶ and Martin⁴¹
19	Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening 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. Palliative care: • provides relief from pain and other distressing symptoms; • affirms life and regards dying as a normal process; • intends neither to hasten or postpone death; • integrates the psychological and spiritual aspects of patient care; • offers a support system to help patients live as actively as possible until death; • offers a support system to help the family cope during the patients illness and in their own bereavement; • uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated; • will enhance quality of life, and may also positively influence the course of illness; • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.	World Health Organization (2002)³⁵	Ahmedzai et al.,¹⁷ Batchelor,⁴³ Bausewein and Higgins,⁴⁷ Cherny,⁴⁰ Doyle,⁴⁸ Hui et al.,⁴⁹ Kuebler et al.,³⁹ Meghani,²⁶ and Sawatzky et al.²

Thematic analysis

Results of the thematic analysis of concepts within each domain are listed in Table 2. Seventeen of the nineteen definitions of palliative care included at least one concept relating to whole-person care.^{17–21,23–31,33–35} Seventeen included emphasis on quality of life.^{17–25,27–32,34,35} Fifteen included concepts related to mortality acknowledgement.^{17–22,24,25,27,30–35} Some included concepts that did not clearly fall under one of the three proposed domains such as including family in the unit of care,^{17–21,23,25–27,29,31,33–35} individualized care,^23,26 care coordination,^18,19,27 or good communication.^26,27

Table 2.

Concepts Extracted from the Compiled Definitions of Palliative Care, Sorted into the Three Domains of the Conceptual Model

Whole-person care	Mortality acknowledgement	Focus on quality of life	Other
Attending to psychosocial, psychological, social, emotional, intellectual, existential, and/or spiritual domains^{17–19,21,24,25,27,31,34,35}Interdisciplinary or team-based^{18–20,26,27,29,33,35}Sensitivity to patient's personal, cultural, and religious values, beliefs and practices^21,25,28Relieving suffering^25,27,35Person-centered approach^17,21Acknowledging dying as profoundly personal experience^21,25	Patients with an illness or condition that is:• Life-threatening^18,19,21,35;• Incurable^24,25,31,33;• Progressive^22,24,25,32;• Terminal^17,22,32;• Life-limiting^17,24;• Advanced^18,22,32;• Has a limited prognosis^17,22,32; or• For which curative treatment is no longer effective or the goal of care^30,34;Affirming life and regarding death as a normal process^21,25,34,35Providing support through course of illness, dying process, and after death^27,33	Goal of optimizing, promoting, or improving quality of life^{17–20,22–25, 27,29,32,34,35}Assuring patient comfort^19,21,24,30Restoring functional capacity or achieving maximum function^21,25,30Neither hastens nor postpones death^21,34,35Supporting patients in living as actively as possible until death^34,35	Families in the unit of care• Care should be provided to patients as well as their families, close friends^{17–21,23,25–27,29,31,33–35}• Support for family during care and bereavement ^26,34,35• Family-centered care²⁷Timing of palliative care• Provided throughout entire continuum of illness^{20,27,28,31,34,35}• Alongside or independent of curative or life-prolonging treatment^{20,24,27,34,35}Principles of good medicine• Personalized care^23,26• Studying and managing patients^22,32• Coordination of care^18,19,27• Effective communication^26,27• Assessing patient needs and treatment options²⁸• Distinct knowledge, skills, attitudes²⁹;• Across settings²⁹Palliative care as a specialty• Palliative care is a medical specialty^18,20• Basic vs. specialized care¹⁷Palliative vs. hospice care• Equivalent to Mount's “hospice”²⁴• Extends principles of hospice to broader population²⁸• Ideally, would segue into hospice as illness progresses²⁸

Only elements cited by two or more authors are included, with the exception of the “Other” column, which includes all concepts.

Discussion

This conceptual model proposes that a palliative approach exists when care incorporates three domains simultaneously: whole-person care, focus on quality of life, and mortality acknowledgement. The purpose of the literature review and thematic analysis was to determine whether this model is consistent with published definitions of palliative care. The results of the thematic analysis suggest this conceptual model possesses substantial content validity.

While the vast majority of elements included in most definitions of palliative care fall neatly into one of the three domains, several concepts were assigned to the category “other.” Because the content analysis process was, by necessity, interpretive, we chose to be conservative in interpretation, assigning several concepts to the “other” category, which could arguably have been classified differently. For example, “including family within the unit of care” is consistent with both whole-person care and quality-of-life focus, but for the purposes of this review was categorized as “other.” Assignment to the “other” category did not necessarily imply contradiction to the model, but often represented a methodologically conservative decision about how to categorize an element that did not relate only to a single domain.

The domains reflect familiar ideas in palliative care, but the innovation of the proposed model is to make explicit that a palliative approach exists when, and only when, care includes elements addressing all three domains. Every published definition lists features of palliative care^17–35 (e.g., “pain and symptom management, information sharing and advance care planning, psychosocial and spiritual support”¹⁸). However, each list is different and none specifies the relationship among the features listed. Is the list exhaustive or illustrative? Is every feature mandatory, or only some? Do the features apply to individuals or teams? The conceptual model represents an important step by grouping key features and making explicit the relationship between them.

This model has several potential applications. It can aid education and communication in a topic area where confusion over terminology is common. For healthcare providers and organizations, it could guide efforts to implement a palliative approach by linking the central elements of the philosophy of palliative care to specific and measurable operational practices. (for example, behaviors indicating the presence of whole-person care might include documentation of systematic evaluation of psychosocial care needs. Actions aligning with quality-of-life focus might include documentation of regular symptom assessments. Indicators of mortality acknowledgement might include documentation of goals of care discussions. Finally, the model provides one gauge by which to assess the sufficiency of proposed quality indicator sets as well as existing checklists⁵⁰,⁵¹: do they address all core domains? Indicator sets that address all core domains, for diverse patient populations, care settings, and provider groups will be keys to supporting equitable access to a palliative approach at a system level.

This article's primary limitation is that the literature search, while thorough, was not exhaustive and was unlikely to capture every extant definition. Future research will further validate the model through direct feedback from palliative care practitioners, and explore use of the model for educational, program planning, and performance measurement purposes in different patient populations, provider groups and healthcare settings.

Conclusion

This article proposes a conceptual model which asserts that a palliative approach exists when care simultaneously addresses whole-person needs, enhances quality of life, and acknowledges mortality. This model is applicable to care provided in any setting, by any provider, to any patient with a life-threatening illness, at any point in their illness trajectory. The domains of the proposed model are consistent with published definitions of palliative care.

Footnotes

Acknowledgment

Andrea McLellan, Head of Collections and Technical Services at McMaster University Health Sciences Library, for her assistance in developing our literature search strategy.

Author Disclosure Statement

No competing financial interests exist.

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