Introduction

The modern hospice movement has its origins in the work of Dr. Cicely Sanders in the 1960s and has since evolved from a philosophy of care to a professional discipline with expertise in symptom management, psychosocial and spiritual care, communication, decision making, caregiver support, and end-of-life care [10, 25, 26]. Dr. Baulfor Mount coined the term “palliative care” around 1975 to describe his hospice program in Canada, and it has since gained acceptance worldwide [33]. Over the past few decades, numerous other terms have been used to describe this ever evolving entity, including “care of the dying,” “terminal care,” “end-of-life care,” “continuing care,” “total care,” “holistic care,” “comprehensive care,” “comfort care,” “pain and symptom management,” and “quality-of-life care” [9, 17, 22, 33]. More recently “supportive care” and “best supportive care” have gained popularity [15, 21, 24]. Some opinion leaders have called these terms euphemisms [9, 14, 17], and others have argued for the need for standardized definitions [35, 42, 61].

Previous studies have shown that “palliative care” is confusing to clinicians and patients alike [8, 34, 50]. The National Institute of Health State of Science Conference Statement on Improving End-of-Life Care stated that “there has been a lack of definitional clarify related to several concepts and terms” [4]. The lack of definitions for key terms represents a barrier to clinical communication and research. To learn more about the state of definition, we recently sampled journal articles in 2004 and 2009 and determined the frequency of commonly used terms in the palliative oncology literature, the proportion of articles that provided definitions for each term, and how each term was defined [35]. We found that “palliative care” and “hospice care” were commonly used in the published palliative oncology literature and were variably defined with multiple definitions [35]. In contrast, “supportive care” and “best supportive care” were less frequently used, and no clear definitions were found for these terms. However, that study was limited only to articles published in two different 6-month periods, and thus did not provide a full picture of the definitions and concepts available.

A better understanding of the key concepts and defining features for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” could provide a common ground for clinical and research communication and pave the way for standardization. The objective of this study is to examine the published literature, medical dictionaries, and textbooks for concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care.”

Methods

Literature search

The Institutional Review Board at MD Anderson Cancer Center provided approval to proceed without the need for full committee review. Between February 21, 2011 and April 18, 2011, our clinical librarian searched all the citations on Ovid MEDLINE PubMed, Ovid PsycInfo, Ovid EMBASE, and EBSCO CINAHL from 1948 to 2011. Our search strategy consisted of Medical Subject Headings (MESH) and text word or text phrase for “palliative care/medicine,” “supportive care,” “best supportive care,” and “hospice care,” plus one of the following terms including “defin$,” “understanding,” “conceptualization,” “terminology,” and “nomenclature,” Original studies, reviews, systematic reviews, guidelines, editorials, commentaries, and letters were included. Non-English articles, dissertations, and conference abstracts were excluded. Duplicates were removed. We did not include definitions from the internet and/or various organizations because a vast majority of these were already included in the peer-reviewed manuscripts above, and we have recently reported these definitions in a related study [35]. Articles on palliative/supportive/hospice care that did not specifically define or conceptualize the terms were excluded from this analysis (e.g., articles on specialized palliative care interventions).

After the initial librarian search, two palliative care specialists independently reviewed the title and abstract of each citation for inclusion. Publications were included if one of their objectives was to provide a definition or conceptualization for the term of interest. Any disagreements were discussed and a consensus reached.

The search for articles examining one term often uncovered papers that discussed the concepts for multiple terms. For instance, “palliative care” and “hospice care” were often discussed together. For this reason, articles that were not identified in the initial search but found to be highly relevant were also included as additional articles of interest. For completeness, we also included an article on “best supportive care” that was recently published outside of the date range specified in our search strategy [15].

Upon identification of relevant articles, we retrieved the full manuscript, examined each study in detail and captured the key concepts involved. We elected to extract defining concepts using the entire manuscript as a unit instead of individual definitions to allow us to obtain a more complete perspective. This process was undertaken independently by two investigators, both with training in palliative care research (D.H. and M.D.). The inter-rater agreement for all variables was high (kappa = 0.82−1.0). We also extracted any definitions cited and/or provided by the authors. We combined the reporting for “supportive care” and “best supportive care” because three of nine articles defining these two terms used them interchangeably [15, 17, 18].

Dictionary and textbook search

We also searched for definitions related to “palliative care/medicine,” “supportive care,” “best supportive care,” and “hospice care” in six print dictionaries and four online medical dictionaries. The print dictionaries were selected from a list of 26 based on their year of publication and authoritative publishers, and included McGraw-Hill Allied Medical Dictionary (2008), Dorland’s Illustrated Medical Dictionary (2007), Black’s Medical Dictionary (2010), Mosby’s Medical Dictionary (2009), Stedman’s Medical Dictionary (2006), and Taber’s Cyclopedic Medical Dictionary (2009).

The Google search engine was used to identify four online medical dictionaries based on criteria outlined by A Guide for Evaluating Health Web Sites provided by the National Network of Libraries of Medicine (http://nnlm.gov/outreac/consumer/evalsite.html). These included MediLexicon (2011), Medical Dictionary (WebMD, 2011), MedlinePlus Medical Dictionary (2011), and The Free Dictionary: Medical Dictionary (2011).

We identified five commonly used palliative medicine textbooks (Oxford Textbook of Palliative Medicine, 4th edition, Textbook of Palliative Medicine, 1st edition, Principles and Practice of Palliative Care and Supportive Oncology, 3rd edition, Palliative Medicine, 1st edition, and Principles and Practice of Supportive Oncology 1st edition), and searched for definitions for the terms of interest.

Statistical analysis

We summarized the concepts and definitions using frequencies and percentages.

Results

Literature search

The literature search flowchart is shown in Fig. 1.

Fig. 1
figure 1

Search strategy for articles that defined “palliative care,” “supportive care,” “best supportive care,” and “hospice care”

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Concepts and definitions for “supportive care” and “best supportive care”

Nine articles focused on the concepts of “supportive care” and “best supportive care,” including one systematic review, three editorials, three review articles, and two letters to the editor (Table 1). A majority of articles (N = 7/9) acknowledged confusion in how these terms were used in the literature.

Table 1 Conceptual elements for “best/supportive care,” “palliative care,” and “hospice care”
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Among the three of nine articles focusing on “supportive care,” two described it as an all encompassing service providing care from diagnosis to bereavement and another defined it as symptom management during antineoplastic therapies. Six of the nine articles examined the term “best supportive care.” This term was discussed in the context of randomized controlled trials in five of six articles, of which four suggested that the descriptive word “best” requires justification and standardization, and four considered it to be equivalent to “palliative care.” The remaining “best supportive care” article defined it as “treatment with antibiotics, transfusions of blood and blood products, hydroxyurea, and hematopoietic growth factors” for patients with acute leukemia.

All nine articles discussed the role of “supportive care” and “best supportive care” for controlling symptoms and improving quality of life. The target population ranged from patients on cancer treatment (N = 9/9) to cancer survivors (N = 3/9). Volunteers (N = 0/9) and bereavement services (N = 1/9) were not usually discussed. Compared to “hospice care” and “palliative care,” “supportive care” focused more on patients receiving treatment and interdisciplinary care was less often described (Table 2).

Table 2 A comparison of the conceptual elements among “best/supportive care,” “palliative care,” and “hospice care”
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From the bibliographic databases, we identified 13 unique definitions for “supportive care” and “best supportive care” (Table 3). We found one entry for “supportive care” in our dictionary search and another in our textbook search (Table 4). No definitions were available for “best supportive care” in medical dictionaries and textbooks (Table 5).

Table 3 Definitions for “best/supportive care,” “palliative care,” and “hospice care”
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Table 4 Definitions for “palliative care,” “supportive care,” and “hospice care” from print and online dictionaries
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Table 5 Definitions for “palliative care,” “supportive care,” and “hospice care” from various textbooks
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Concepts and definitions for “palliative care” and “palliative medicine”

Our search revealed 25 articles on “palliative care/medicine” (Table 1). The authors were predominantly from the USA (N = 11) and Europe (N = 10) and represented multiple disciplines including medicine (N = 14), nursing (N = 4), pharmacy (N = 3), and others (N = 4).

Common concepts defining palliative care included quality of life and symptom control (N = 24/25), interdisciplinary care (N = 20/25), caregiver support (N = 22/25), and patients with life-limiting advanced illness (N = 25/25). Twelve of the 25 articles discussed the role of palliative care earlier in the disease trajectory (Table 1). Eleven of the 25 articles reported “palliative care” as confusing and 8 of 25 described the euphemistic use of terms in palliative care.

Among 4 terminology research original studies, 5 organization statements, 6 editorials commenting on definitional issues, and 10 articles explaining the role of palliative care, we found 24 unique definitions for palliative care/medicine (Table 2). Definitions cited included those from the World Health Organization, the American Association for Hospice and Palliative Medicine, the Center to Advanced Palliative Care, the National Consensus Project, the National Quality Forum, the National Hospice and Palliative Care Organization, the American Society of Clinical Oncology, the Palliative Medicine Institute, and two textbooks (the Oxford Textbook of Palliative Medicine, the ABCs of Palliative Care). The World Health Organization 1990 and 2002 criteria were cited most often in 14 of 25 articles (Table 3). The term “palliative medicine” was used interchangeably with “palliative care” (Table 3).

Our dictionary search revealed four definitions for “palliative care” and 0 for “palliative medicine” (Table 4). Palliative care textbooks provided a total of 15 definitions for “palliative care,” with four of five textbooks referring to the WHO definition (Table 5). “Palliative medicine” was defined in four of five textbooks.

Concepts and definitions for “hospice care”

The concept of “hospice care” was examined in five editorials, two organization statements, and five review articles (Table 1). Hospice care was mostly discussed in the context of the USA (N = 10). Five of 12 articles found this term “confusing,” and 5 of 12 discussed fear associated with the use of this term.

The key concepts discussed in these articles were symptom management (N = 12/12), interprofessional care (N = 11/12), caregiver involvement (N = 11/12), and bereavement services (N = 9/12). Five of the 12 articles discussed the 6-month prognosis criterion for hospice admission (N = 5/12) (Table 1). Nine of the 12 articles discussed hospice as predominantly community based, and 6 of 12 also described inpatient services. Compared to “supportive care” and “palliative care,” “hospice care” emphasized more on the role of volunteers, bereavement care, and community care (Table 2).

Overall, 17 definitions were available for “hospice care” from 12 articles (Table 3). All print and online dictionaries and textbooks provided a definition for “hospice,” describing it as a philosophy, a system, a program or a facility. (Tables 4 and 5).

Discussion

The use of the terms “best/supportive care,” “palliative care,” and “hospice care” have been of interest to many individuals, including Dr. Cicely Saunders [54]. In this systematic review, we examined empirical data from the literature and identified defining concepts for “best/supportive care,” “palliative care,” and “hospice care.” Our search revealed a wide range of definitions for these terms, with significant overlaps yet many distinguishing features. Based on our findings, we developed a preliminary conceptual framework unifying these terms along the continuum of care to help build consensus toward standardized definitions.

The term “supportive care” has been in existence for several decades [47] and is part of the name of the organization “Multinational Association of Supportive Care in Cancer” and its association journal Supportive Care in Cancer. “Supportive care” is also the name of multiple textbooks, such as Cancer Supportive Care and Supportive Care in Cancer Therapy.

Consistent with our previous study [35], we found that “supportive care” and “best supportive care” were used interchangeably at times, and both were variably defined with a wide spectrum of definitions. The scope of services under “supportive care” ranged from the use of hydroxyurea for patients with acute leukemia to survivorship care [17, 47, 52]. When Fitch et al. developed the Supportive Care framework in 1994, it was described as a comprehensive program to meet “patients’ physical, informational, emotional, psychological, social, spiritual, and practical needs during the prediagnostic, diagnostic, treatment and follow-up phases” [28–30]. This definition was consistent with other articles identified in our search [17, 47]. A questionnaire named the “Supportive Care Needs Survey” has been developed and subsequently validated to include five domains: physical and daily living, psychological needs, sexuality, patient care and support needs, and health system and information needs [11, 53, 55]. The “supportive care” population included patients on cancer treatment needing symptom support to those with life-limiting illness and their families. Almost half of the authors commented that “best supportive care” is essentially equivalent to “palliative care” [15, 18, 20, 39]. Recognizing the importance of definitional clarity for these two terms, a number of investigators have taken the initiative to develop consensus definitions through the Delphi process [15, 19].

In contrast to “supportive care,” “palliative care” was relatively more homogeneously defined. “palliative care” involves interdisciplinary care focusing on improving patients’ quality of life by addressing their physical, emotional, and spiritual needs, and on supporting their families. Our findings are consistent with those of a concept analysis study [43]. The WHO definition [2] captured the essential features of “Palliative care,” and was cited the most often. Although all definitions unanimously agreed that “Palliative care” serves patients with life-limiting illness, there has been some debate whether it involves patients with curable disease as well.

There appears to be general consensus on what constitutes “hospice care”—a predominantly community based program that provides interprofessional multidimensional care for patients with terminal illness (i.e., expected survival <6 months) and their families, working in conjunction with volunteers to provide services ranging from symptom management to bereavement care. “Hospice care” was considered to be under the spectrum of “palliative care” by several authors [9, 37].

By examining “supportive care,” “palliative care,” and “hospice care” together, we are able to highlight the significant similarities and differences among these terms. All three terms denote interprofessional care to optimize quality of life; however, the scope of service, patient population, and how each is perceived differ significantly (Fig. 2). Chronologically, “hospice care” is the earliest term. Understandably, it is more often defined in dictionaries compared to “supportive care,” which is a newer term with an evolving meaning. “Palliative care” is somewhere in between. “Hospice care” is limited to patients with terminal illness (i.e., prognosis 6 months or less in the USA), while “supportive care” is expanding its services to address the full range of issues from survivorship to bereavement. Finally, “hospice care” and to a certain extent “palliative care” are associated with a lot of stigma because of their association with death and dying. In contrast, “supportive care” is gaining popularity as the name for some “palliative care” programs because it is less likely to provoke anxiety [21, 24].

Fig. 2
figure 2

A conceptual framework toward understanding “supportive care,” “palliative care,” and “hospice care.” Based on our systematic review, the stage of disease was a key distinguishing factor among “best/supportive care,” “palliative care,” and “hospice care.” Thus, the different stages of disease are depicted at the bottom, with solid arrows showing that patients can shift from one stage to another. The patient population and scope of service for “supportive care,” “palliative care,” and “hospice care” is shown by the horizontal bars above. Under this model, “hospice care” is part of “palliative care,” which in turn, is part of “supportive care.” Importantly, the dashed boxes illustrate the evolving nature of these definitions to expand their scope of service. For instance, in addition to providing care to patients on treatment, some of the definitions of “supportive care” also included a more comprehensive description involving cancer survivors and the bereaved. Similarly, an increasing number of articles suggest that “palliative care” should start from the time of diagnosis. Other distinguishing features among the three terms are listed on the right hand side

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Based on our review, we developed a preliminary conceptual framework (Fig. 2) aimed to highlight the overlapping yet unique function of each term. Under this model, “hospice care” is part of “palliative care,” which in turn is under the umbrella of “supportive care.” Our conceptual framework, which shares some similarities to a proposed model in the Oxford Textbook of Palliative Medicine [16], is developed independently based on findings from our literature review. It may help clinicians, researchers, and policy makers put the three terms in context of the existing literature, and ultimately formulate a consensus toward standardized definitions for these terms. Importantly, this model is an evolving one based on our finding that “supportive care,” “palliative care,” and “hospice care” are all actively expanding their services to reach patients earlier in the disease trajectory.

To our knowledge, this is the most comprehensive examination of these four commonly used terms. A number of investigators have conducted systematic reviews with a narrower focus. For instance, Cherny et al. [18] examined the meaning of “best supportive care” and “supportive care” in oncology clinical trials. Meghani [43] carried out a concept analysis of “palliative care” and “hospice,” although the number of studies in the final sample was not reported. Bosma et al. [12] also performed a systematic review of “hospice palliative care” limited to studies that focused on cultural conceptualizations. Importantly, our findings are consistent with these studies, and bring a new perspective by putting these terms in context of each other.

Our study has several limitations. First, our initial search strategy may not have captured all the articles relevant to our interest. This strategy was developed in conjunction with professional medical librarians to ensure a balance between sensitivity and specificity. We only examined the peer-reviewed literature focusing on conceptualizing/defining the terms of interest and did not specifically retrieve definitions from various organizations because a majority of them were already cited and discussed in the papers (Table 3). Second, we did not review the gray literature or conduct a hand search of abstracts. Third, our search was limited to the English language, and hence, cultural variations in definitions for these terms could not be examined. This could potentially limit the generalizability of our study findings on an international basis. Fourth, we did not conduct a construct or linguistic analysis. Future studies may benefit from more in-depth examination of the concepts identified in this study. Fifth, we did not specifically examine the meaning of each term by geographic region. Further studies are required to determine how these terms may be interpreted in various continents. Finally, our study did not examine new hybrid terms such as “supportive and palliative oncology,” “palliative and supportive services,” “psychosocial oncology,” and “hospice palliative care.”

Palliative care has evolved from a philosophy of care for the dying to an interprofessional discipline that addresses quality of life for patients and their families throughout the disease trajectory [60]. As this discipline matures, we urgently need consensus definitions to help standardize clinical care, research, and program development. The preliminary conceptual framework based on our systematic review may help clarify the relative meaning of these important terms and facilitate the synthesis of standardized definitions through consensus building among various international supportive, palliative, and hospice care organizations. Rather than trichotomizing patient care into three different services, this model supports the provision of patient care by a single discipline comprised of a team of healthcare professionals with expertise in symptom management, psychosocial care, spiritual support, caregiver care, communication, and complex decision-making skills and end-of-life care.