Abstract
Background:
Currently, there are over 70 hospice societies spread across urban, rural, and remote communities in BC. However, these societies are not utilized to their fullest potential, primarily due to a lack of awareness of the unique role they play in their communities and common misconceptions about the types of care they provide.
Objectives:
To develop a consensus-based definition of the care provided by hospice societies in BC, suitable for use across government, healthcare, community organizations, and the public.
Design:
A modified Delphi approach, guided by an environmental scan, was used to reach consensus on a standard definition of care among a panel of experts.
Methods:
Following an environmental scan of gray and published literature for attributes and components of care delivered by hospice societies, the expert panel participated in a modified Delphi process of iterative surveys asking questions about content, wording, and structure of the definition. The 56-member panel consisted of hospice society experts, palliative care experts, and people with lived experience. Consensus was defined as 75% agreement across the entire panel (all) and 75% agreement across hospice society representatives (hospice).
Results:
After six survey rounds, consensus was met on a common definition with three different length versions: full- and medium-length versions (85% all, 85% hospice) and a short version (94% all, 100% hospice). Differing opinions within our expert panel about components of care supported the need for this common definition.
Conclusion:
Our consensus-based definition provides unprecedented clarity and a shared understanding about the care provided by hospice societies in BC. Hospice societies are expected to benefit from this clarity by maximizing their use and access. It is also expected that this definition will guide advocacy efforts, ultimately contributing to the quality and sustainability of hospice care across the province.
Plain language summary
Without a clear definition of the care that hospice societies in BC provide, many people mistakenly think these societies only run inpatient facilities for end-of-life care. In reality, the more than 70 hospice societies in British Columbia (BC) offer a wide range of services that go beyond caring for the dying. This common misconception has led to a lack of public awareness about the full scope of services available. As a result, hospice societies are not used to their fullest potential. Our objective for this project was to define what hospice societies do in BC, so that the public, government, healthcare system, and community organizations can be better informed about what hospice societies have to offer people in their communities. We looked at current definitions of hospice societies and similar concepts to identify potential concepts to include in our definition. We then engaged a panel of experts in a decision-making consensus process, to reach agreement on a definition of hospice society care. The consensus process used online surveys that asked the experts about what to include in a definition and how it should be worded. The 56-member panel had hospice society board members and staff, palliative care professionals, and people with lived experience. We defined agreement as 75% of everyone and 75% of the hospice society experts. After 6 surveys, agreement was met on a common definition with three different-length versions: full, medium, and short. Differing opinions among panel members during the surveys confirmed the importance of defining hospice society care and that misunderstandings of hospice societies exist across society. The definition describes the role that hospice societies play in BC. If people use the definition, more British Columbians will understand and use the broad range of services that hospice societies offer to those dealing with life-limiting illness or bereavement.
Introduction
In the face of aging populations and a growing burden of chronic illness, the value of palliative care has garnered increased governmental attention and priority worldwide.1 –3 Despite this greater attention, poor access and use of palliative care services is a remaining issue in many countries, including Canada.1,4 Poor utilization of palliative care largely reflects a lack of awareness of services, along with misconceptions of what palliative care is and who it is for.5,6 Recent efforts to improve the awareness of palliative care include the dissemination of standard definitions of palliative care and the prioritization of palliative education at the national level in multiple countries.1,7 –10
One group of service providers within palliative care that have notably suffered from misconceptions about their unique role in communities is hospice societies. Historically, the term “hospice” was used to identify a place of medical care for the chronically ill and dying. 11 After the introduction of palliative care to Canada in 1975, “hospice societies” became a label for the community-based organizations that provide this end-of-life hospice care. 12 After the BC Ministry of Health established the “Hospice Project” in 1979, the first hospice societies in BC, Victoria Hospice and Vancouver Hospice, were established. This number has grown to a total of 68 hospice societies in BC spread across urban, rural, and remote communities. These organizations are listed and can be viewed on BC Hospice Palliative Care Association directory (https://bchpca.org/member-directory).
While the services provided by hospice societies in BC vary in scope, the focus of care is on unmet psychosocial and practical needs of people living with life-limiting illness, their families and others affected by loss. Their care is provided across settings, including in client homes, long-term care homes, hospitals, assisted living residences, and hospice facilities (also known as hospice beds or hospice residences).13,14 These services are generally reflective of community needs and are primarily delivered by well-trained volunteers supported by highly qualified professionals, typically operating at staffing ratios of nearly 10 volunteers for every staff member. 13 Only a few hospices in BC operate an in-patient hospice facility that provides 24 h medical and nursing care for the residents who are approaching the end of their life. The majority of BC hospice societies’ funding comes from community sources including individual and corporate donors, while regional health authorities provide supplemental financial support. 13
Despite their wide scope of care for individuals and families, the unique role that hospice societies in BC play in maximizing quality of life and wellbeing in their community has not been adequately defined. This is in part due to geographic variability in how the term “hospice” is understood. In some countries, such as the United States, hospices focus more concretely on medical care provided at the end of life, with medical professionals primarily delivering this care.15,16 In Canada, hospice societies more often tend to fill a role that is outside the sphere of standard medical care, with much of their scope being non-medical in nature. 12 This is particularly true in BC, where hospice societies collectively serve nearly equal numbers of grieving family members/friends as they do people at the end of life. 13 Despite this, the public’s understanding of hospice societies’ work in BC is commonly reduced to the 24-h care within in-patient hospice facilities. This 24-h medical and nursing care delivered in these facilities is typically fully funded by health authorities and focuses on both the physical symptoms and psychosocial needs for terminally ill people who are expected to die within a few months of time.15,17 As a result, many of the key services that hospice societies provide (e.g., bereavement support for grieving families) may be poorly understood by the public and underutilized by those who may benefit from their services.
In October 2020, the Provincial Hospice Working Group in BC, now renamed as the Hospice Care Alliance Steering Committee, released a report titled: Hospice Care in British Columbia: The Path Forward. 14 The report presents a 10-step action plan aimed at enhancing and maximizing the role of hospice societies in BC. Among the recommended actions is the need to develop a common definition that could be universally used across hospice societies, government, the healthcare system, and other community partners in BC. This project sought to fulfill this action item in the action plan through a modified Delphi approach. Our aim was to develop a common definition of the care provided by hospice societies in BC.
Methods
Our process used a preliminary environmental scan followed by a modified Delphi technique with six surveys (Figure 1). The Delphi technique is a group process that collects the opinions of experts through sequential surveys to reach consensus on an issue. The Delphi technique has been used previously to reach consensus on definitions, including within palliative care.8,18 –20 While the design of the technique may vary depending on purpose, key characteristics of the Delphi approach include: (1) expressed responses from surveys are deidentified; (2) controlled feedback, whereby results are summarized for group members to consider the information in the next stage, or reconsider their answers if needed; and (3) statistical group response, whereby decisions are made based on the proportion of respondents agreeing.21,22 This study and paper follow the Conducting and Reporting Delphi Studies (CREDES) in palliative care guidelines (Supplemental Material). 23 During our process, a steering committee made up of Steering Committee members of the Hospice Care Alliance of British Columbia provided strategic advice throughout the project phases. Two project team members (E.H. and P.T.) are also members of the Hospice Care Alliance Steering Committee, though the Delphi process was coordinated by two independent researchers (S.A. and R.C.).
A flowchart of our process.
Environmental scan
To inform our process, we completed an environmental scan of white and gray literature to identify pre-existing definitions and hospice society mission statements. The search strategy is shown in Table 1. For our search of gray literature, Google was used in combination with the search commands “SITE” and “AROUND” with a distance of five words. For our search of the white literature, combinations of “hospice society,” “hospice care,” “hospice palliative care,” “British Columbia,” and “Canada” were used with the University of British Columbia’s library service Summon. Findings for the white literature were limited to the past 10 years. There were no date criteria for the gray literature.
Keywords and grey literature sources used in the search for existing definitions.
The date of online publication, term, and definition were recorded for any unique definitions describing hospice palliative care or the care delivered by hospice societies. Analysis of the definitions and the hospice mission statements identified by the scan followed an inductive content analysis approach as described by Elo and Kyngas 24 and was performed by a single member of the research team (S.A.) and reviewed by the rest of the team. This involved organizing the definitions and hospice mission statements, grouping their content into categories. 24 Attributes of definitions found in the scan were grouped with other attributes of the same wording or shared meaning. Similarly, if an attribute of a hospice mission statement shared wording or meaning with attributes of other mission statements, they were grouped. Resulting attributes for both definitions and hospice mission statements were then placed into descriptive categories. Duplicates and their frequencies were also recorded. The environmental scan results were provided as a reference document to the expert panel and informed the development of definition components that were proposed in the first survey.
Expert panel
The expert panel comprised a Hospice Group and a Partner Group. To recruit Hospice Group participants, a request for expressions of interest to join the panel was emailed to the 71 hospice societies across BC, describing the aim to recruit executive directors, volunteer coordinators, counselors, volunteers, and board members. All those who expressed interest were included. The Partner Group included health authority leaders, palliative care researchers, clinical palliative care specialists, clinicians who refer to community hospices, and people with lived experience of receiving community hospice services for themselves or for a family member. Partner Group candidate participants were identified by the project team and steering committee based on their professional networks and then recruited through direct personal invite emails. People with lived experiences were recruited through REACH BC and Patient Voices Network, two provincial organizations that connect the public with current research participation opportunities.
Before the first survey, participants received an orientation presentation describing the anticipated process and were invited to an optional group meeting with project staff to answer any questions they had. Participants were informed that completing the first survey implied consent to the project. Ethics was obtained for this project from the University of British Columbia’s research ethics board, and any participant who completed a survey throughout the process was provided a $25 gift-card.
Invites for the first and second surveys were sent to all confirmed members of the expert panel. Invites for survey 3 onward were sent to the respondents of the previous survey. Information about the panel participants for each survey is shown in Table 2. All surveys had a response rate of over 85%.
Overview of expert panel participants.
Delphi rounds and data analysis
We used six survey rounds (see Figure 1). Included in the survey distribution emails were reference documents that participants were asked to review prior to completing each survey. For the first survey, this reference document included the summarized results of the environmental scan. For all other surveys, these reference documents provided a summary of survey results from the previous round. Each online survey was open for roughly 2 weeks, using Qualtrics software hosted by the University of British Columbia and distributed via email. Survey settings allowed participants to complete the survey in multiple sittings if desired, and up to three reminder emails were sent. Summary statistics and visualization of survey responses were completed in Microsoft Excel. Written reports summarizing the results were provided to the panel between surveys.
Two criteria were determined a priori to establish consensus: (1) 75% or higher agreement of all respondents, and (2) 75% or higher agreement within only the Hospice Group. The combination of these two criteria was selected to recognize the importance of the Hospice Group. Open-text boxes were provided throughout for respondents to describe their answers or share any comments. Items were represented if they were met with disagreement between groups, or if respondents left new comments about the item that went against the group consensus. In the latter case, both the item and the comment were presented in the next survey.
Throughout our process, we used the word “attribute” to describe a specific aspect of the care (e.g., physical care, spiritual care) and the word “component” as a higher-order descriptor for a group of attributes (e.g., types of supports, who receives the care).
The first survey asked about the inclusion or exclusion of attributes of hospice care identified in the environmental scan. Participants were asked to rate attributes using a five-point Likert scale, ranging from “not at all important” (1) to “essential” (5) for inclusion into a definition. Participants could select “shouldn’t be included” if they felt the attribute did not align with the services provided by hospice societies. Finally, participants were asked to share any attributes that they felt were important but were not already presented. For the first survey only, when over 75% of respondents rated an attribute 5 (essential), it was considered to have met consensus. When over 75% of respondents rated the attribute 4 or 5, it was asked about again in the next survey to confirm consensus.
The second survey sought consensus on: inclusion of new attributes; inclusion of attributes presented in survey 1 that required confirmation or clarification based on respondent’s comments; and options for wording for attributes that met consensus for inclusion in survey 1. The answer “should not be used” was available for options respondents felt should be avoided.
The third survey sought consensus on: attribute wordings; aspects of the definition that had yet to be considered; and how components and attributes should be ordered for the final definition. Final consensus-seeking questions on attributes that needed further clarification were asked, followed by phrasing options to be ranked, as in survey 2. Respondents were also asked to rank components of the definition and the attributes within these components by relative importance.
The fourth survey sought to reach consensus on any components of the definition that had yet to be finalized and sought agreement on a multi-sentence definition that reflected the results of prior surveys. For the creation of shorter definition versions, this survey asked about higher-level attributes from each component that could represent the entirety of the component.
Finally, the fifth and sixth surveys proposed final attribute wordings after incorporating a small number of changes and presented the different versions for the panel to endorse.
Results
Environmental scan
We identified 90 definitions for the concept of hospice society care across the literature. Of these, 60 were unique findings (23 repeated definitions). Seven from the white literature were excluded based on pre-determined criteria (two had primary sources older than 10 years, one was not from a Canadian context, and four cited gray literature definitions no longer endorsed by the cited organization). Most definitions (77; 86%) were found in the gray literature compared to the white literature (13; 14%). Of the white literature definitions that met inclusion criteria, four were repeated definitions found in the gray literature. Regarding the use of terms, 45 of the definitions (55%) used “hospice palliative care,” 19 (23%) used “hospice care,” and 15 (18%) used “Hospice” alone. Importantly, only three definitions (4%) specifically referenced hospice societies.
Table 3 shows the six categories from the scan and the frequency of definitions found for the corresponding attributes within each category. Most definitions had attributes that spanned multiple categories.
Attributes of existing definitions of hospice care found in the white and gray literature.
We found 48 mission statements from 53 hospice societies with accessible websites. Table 4 shows the recurring attributes of the mission statements from BC hospice societies. Providing grief and bereavement, end-of-life, and compassionate care/support were key attributes occurring in the majority of mission statements.
The attributes of hospice society mission statements.
Definition components
Table 5 shows the components, attributes, attribute inclusion, and attribute wording results from our process.
Components, attributes, and attribute wording throughout our process.
Findings presented as: Survey number—Percent agreement all: Hospice Group, Partner Group.
Practical supports to address physical needs.
Definition stem
Wording of hospice societies
In the first survey, we used the term “community hospices” to describe hospice societies. However, many respondents interpreted “community hospice” to include hospice beds and thus refer to hospice facilities or residences: “that is how hospice houses are identified” (Survey 1: external respondent), “I think it is important to specify what is a ‘community hospice’. Hospice in Canada is usually a place of care for people at the end of life” (S1: external).
In survey 2, we clarified that the definition was for hospice organizations primarily funded by their communities and by grants, excluding medical and nursing care in hospice beds or home care. The term “hospice society” was then proposed and adopted.
Wording of “care.”
We originally proposed the wording “care provided by hospice societies” in survey 2 where it did not reach consensus. Some respondents had the opinion that the term “care” was more medical in nature, and that “support” may be more appropriate: I think “care” implies that our volunteers are providing actual physical care, when what they are providing, in my mind, is support. Our volunteers are not permitted to provide any kind of “care.” (S3: Hospice)
We, therefore, provided the following alternative wording options in surveys 3 and 4: support, services, supportive services, care and support, support and care, care and services, and services and care, none of which met consensus. However, no additional options were suggested by respondents, and agreement for “support and care” was consistently highest, so it was adopted.
People served
Both “people at the end of life” and “people living with life-limiting illness” met consensus for inclusion. While both groups strongly supported its inclusion, the wording for the attribute “family and friends” had stronger support among the Hospice Group than the Partner Group (S2: 89% hospice, 65% external).
We identified that “family and friends” may not include all informal caregivers or all those affected by a person’s illness or death, such as members of a tight-knit community following a notable death, such as from a murder or natural disaster, or an informal caregiver who is neither a family member nor friend. As a result, in survey 5, we proposed the addition of “and others affected by their illness or death” to this component, which met consensus (S5: 95% all, 100% hospice).
The grieving experience is understood as the emotional, cognitive, and behavioral responses to a loss and therefore encompasses the unique experience of bereavement. 25 However, grief can happen before a loss occurs, such as anticipatory grief, meaning that clientele served by hospice societies may experience grief in addition to, or independent from, bereavement. Therefore, we proposed the inclusion of both concepts, and each met consensus.
Interestingly, the attributes “grief” or “bereavement” were found in most hospice society mission statements (73%), but in only a minority of “hospice care” or “hospice” definitions (20%). Several Hospice Group respondents shared that grief and bereavement services are a core part of the work they provide, though this may be lesser known by the public: I think it is extremely important that the short definition include providing care and support to people living with life-limiting illnesses AND those experiencing grief (or the bereaved). This is actually the population hospice societies serve as they are actually more grief and bereavement societies (in BC especially) than hospice societies. This needs to be included in any and all definitions. (S4: Hospice) We are considering adding a tagline of “Centre for Grief and Loss” to our Hospice Society name, to better define our services. (S3: Hospice)
Aim of care
The attributes of “improved quality of life,” “provide comfort,” and “maintain people’s dignity” all reached consensus for inclusion. Two potential wordings for “improved quality of life” reached consensus: “enhance quality of life” and “enhance quality of life and dying.” Some comments about the inclusion of “and dying” touched on a theme of balancing positive and negative language, with one respondent commenting: “I really feel that if we consider a death positive framework we need to include dying” (S3: hospice). Ultimately, “enhance quality of life” was selected, as “people at the end of life” in the component of who receives the care was considered to already capture those who were dying.
The attribute of “ease suffering” was asked about in three consecutive surveys and ultimately excluded after survey 3. It was repeatedly included because multiple open-text comments were provided in relation to the attribute, so in surveys 2 and 3, these responses were compiled and presented to consider. Some respondents thought “easing suffering” is the responsibility of traditional medical care rather than the hospice society: Honestly for me, when I reflect on the comment of “easing suffering” this work seems to be external to the hospice society, in terms of the definition of suffering. While they are certainly providing comfort, the notion of easing suffering would be more medical and symptom based. (S3: External) It is the duty of the medical community to ease suffering. Certainly, Hospices and Hospice volunteers can work in conjunction with the medical establishment but hospices and volunteers do not have the ability to ease suffering in the physical sense which is what this phrase alludes to. (S3: Hospice)
The theme of balancing positive language with negative also arose again, with other respondents viewing “ease suffering” as important to include as it balances the positive language of “provide comfort,” that may be invalidating to those experiencing suffering: While using positive language is important, suffering is a very real thing that occurs in life, dying and death, and grief. We need to name it and not tiptoe around it. (S3: Hospice)
Additionally, respondents resonated with using “ease” rather than the other options of “reduce” or “relieve,” as it was considered more qualitative in its aim and removes the expectation that suffering would end: The definition of palliative includes the language of relieving suffering. As a palliative care provider, it is my mandate and intention behind my work “to reduce or relieve suffering.” I don’t think we should have a definition around providing supportive hospice care without addressing suffering as part of the definition. I think the language of “ease suffering” balances the words in the definition from WHO of prevention and relieving. By easing, it removes the expectation that we relieve or take it away entirely, but we strive to ease in some capacity. (S3: External)
Supports provided
For the component of supports provided, the attributes of “emotional,” “social,” “grief and bereavement,” and “spiritual” supports met consensus, while “knowledge and skills,” and “connections with available supports” did not.
When considering the wording of the attributes within this component, a nuance was observed around the distinction between “addressing needs” and “providing supports.” The attribute of “practical needs” was originally excluded, while the attribute of “physical needs” reached consensus for inclusion. However, no wording for “physical needs” met consensus. In survey 2, the phrasing for this concept was overwhelmingly selected as “provides [attribute] support” (S2: 96% all, 97% hospice). Based on the comments from survey 2, we observed that while the “needs” of the person may be physical in nature, they may be addressed by “practical” support. This idea was proposed to the panel in survey 3, along with examples of how a practical support may address a physical need, such as getting someone a blanket (physical need for warmth) or writing a letter for them (physical need of being unable to write). Following this clarification, “practical supports” met consensus, taking the place of “physical needs.”
Philosophy of care
Several attributes met consensus for the component “philosophy of care”: “A whole person approach”; “person and family centered”; “care is provided with compassion”; “recognize and respect the diverse aspects of a person’s identity and culture”; and “part of a broader system of formal and informal supports.” The attribute “alignment with the person’s wishes” met consensus in survey 1 but was considered to be already captured in “person- and family-centered,” and was thus excluded in survey 2.
Both “community-based approach” and “follows a palliative approach to care” were proposed and excluded in the first survey. “Community-based approach” was considered too broad: We want to enlist and educate community but we are not serving the whole community. People might perceive that as grossly out of scope. (S1: External).
The concept of a “palliative approach to care” was thought to not be public-facing language.
The attribute “trauma-informed” was suggested by a member of the Partner Group in survey 1, but did not reach consensus when asked about in survey 2. A select few respondents argued its inclusion on the grounds that this is an area for growth for hospice societies: . . .Trauma informed approaches (especially around marginalized people) is an area for growth and development within hospice. I think this is important to include so help hospice reach for a deeper understanding and impact in their services. (S2: External)
However, other respondents held the opposing view that its inclusion would place a burden on hospice societies: If “trauma-informed” is included in the definition, that would require that Hospice Societies have the means and expertise within their training or orientation sessions to help volunteers truly become “trauma-informed.” This may not be possible for some hospice societies. If Hospice societies commit to this within their definition, then training and orientation of volunteers and staff MUST include education in this area. (S2: Hospice) While I thoroughly believe that this is vitally important my concern is, are we well enough trained to include this in the care that we offer. (S2: Hospice)
Providers
The panel agreed that the component of providers should be included but disagreed with the proposed wording; “primarily provided by volunteers, who are part of integrated care teams.” Comments from experts described how hospice societies utilize many trained and paid staff, and thus staff should be specifically mentioned: It also feels that the integration/collaboration with health authority care providers is missing especially with the statement that hospice is primarily provided by volunteers. As a health care provider, that statement negated the care and work that I have given in service within hospice care. (I reacted negatively to that statement). (S1: External) Staff are increasingly involved in direct client support/care when complex needs present around trauma, mental health etc. (S1: Hospice)
In response, we proposed and reached consensus with the structure of “staff and volunteers,” with this order being more strongly supported than the reverse. The wording was then refined to describe both groups as “specially trained.”
Timing and location of care
For the component timing of care, the proposed attribute “when the person wants it” did not reach consensus. Comments indicated that there was hesitancy to include this concept as poor access to hospice societies is an issue for many patients, with some patients unfortunately receiving care later than is ideal. Additionally, timing of care was considered to be sufficiently captured in the component of who receives the care, specifically, the attributes of “people at the end of life” and “people living with life-limiting illness.” Therefore, the component was excluded.
For location of care, both the inclusion and wording “in a variety of settings” reached consensus.
Diversity among hospices societies
The component diversity among hospice societies was added based on survey comments. Hospice participants shared concerns that hospice society services vary based on size and funding, and suggested the definition should clarify that the size and scope of hospice societies vary: We. . . are a small hospice without a building with beds so most of our support in the community centres around grief support (1:1 and in group), overnight vigils (in the hospital and care home), ACP support and general community outreach. (S1: Hospice) So, for us specifically, we cannot include the attributes “physical” and “practical” as they are beyond our scope of practice. Within this survey will there be a distinction made between larger hospices with a dedicated building and beds and hospices like us who simply work out of a small office? (S1: Hospice)
We, therefore, proposed the component of diversity among hospices as well as a descriptive attribute, which reached unanimous consensus (S3: 100% all, 100% hospice).
Different to hospice facilities
Although the term “hospice societies” was accepted in survey 2, comments revealed tensions around the distinctions between “hospice societies” and “hospice facilities” (or “hospice beds,” “hospice residences,” etc.) and whether these distinctions would be known by the public: I hope that this study will be able to address the ongoing “elephant in the room” surrounding the most important way that most hospice societies are defined and publicized: Their name. . .. This definition needs to make it very clear the difference between a Hospice Society and a Hospice. (Our hospice society actually has a regular stream of people showing up looking to be admitted to our community’s hospice!) . . . (S1: Hospice respondent) I’m concerned that people will not understand the difference between “hospice society” and “hospice” as a location of care; as well as how to differentiate hospice society staff versus medical staff/other staff working in hospice. (S2: External respondent)
Given the panel’s tensions regarding this distinction, an explicit component of different to a hospice was suggested. The component was proposed and reached consensus in survey 3. The wording was refined in survey 4 and finalized in survey 5.
Assembling the definition
Component prioritization
To build the definition versions, we followed the rationale that a component’s position within the definition was informed by its importance, and the shorter version(s) would only include the most important components. Therefore, we asked participants to rank the included components according to their relative importance. This revealed two distinct groups of attributes (Table 6). This informed the selection of people served, aims, philosophy, and supports provided for inclusion in the medium and short versions. However, philosophy was ultimately not included, as its attributes were felt to be satisfactorily captured in the other three components.
Importance rankings of definition components.
Findings presented as: Percent agreement all: Hospice Group, Partner Group.
Final definition endorsements
The sixth survey proposed full- and medium-length definitions to the panel for endorsement. Included in a single survey question, both versions reached consensus (S6: 85% all, 85%). A shorter version that reduced the people served component to “those living with or affected by life-limiting illness or death” was also proposed and accepted (S6: 94% all, 100% hospice). Following our final survey, these definition versions were reviewed and accepted by the board of the BC Hospice Palliative Care Association.
All three versions are shown in Table 7. Grammar for each of these definitions was reviewed and finalized by a communications expert.
Final definition versions.
Discussion
This project used a six-survey Delphi process with a panel of hospice society and palliative care experts to establish a standard definition of the care that hospice societies provide in British Columbia. To our knowledge, this is the first time a standard definition of the care delivered by hospice societies has been developed, at a provincial, national, or international level.
Until this point, the unique role played by hospice societies in maximizing quality of life in their communities by supporting people impacted by life-limiting illness, caregiving and loss has not been adequately defined. It is important to note that this definition has a lower level of specificity and does not describe particular services that different hospice societies provide, nor does it outline the causes of illness or death that hospice clientele experience. Rather, this definition gives an overview of the unique role that hospice societies play in communities across BC.
Throughout our process, the panel highlighted several attributes of care as being key responsibilities of hospice societies. One such attribute is grief and bereavement support, appearing in two components of the definition: who receives the care and what needs are addressed by the care. It became clear that while hospice societies are traditionally thought to deliver care and support for people at the end of life, a substantial and growing portion of their care and support is dedicated to individuals experiencing grief and bereavement. This is significant, as this large segment of their clientele was not previously reflected in most existing definitions of “hospice” or “hospice palliative” care. Only 12 (20%) of the definitions found in the environmental scan explicitly mention grief and/or bereavement, despite grief and bereavement services being a core part of hospice societies’ repertoire of support for people in their communities.13,26 We anticipate that including the “grief and bereavement support” within the common definition will raise awareness of the availability of these services, thereby encouraging greater use by grieving and bereaved individuals. This awareness is especially important now, as the impacts of recent public health crises, such as the COVID-19 pandemic and the toxic drug crisis, have significantly increased the scale and complexity of bereavement and grief experiences across BC. 27
During our Delphi process, the “partner group” supported the inclusion of “physical care” attributes into the definition, whereas the “hospice group” repeatedly sought to differentiate their services from medical and nursing care. Their hesitancy toward any word with connotations to medical or nursing care underscores a desire for hospice societies to not be confused with medical palliative care services. Concern regarding the medicalization of hospice care services is not new28,29 and indeed harkens back to the foundational concept of hospice societies as community-based, voluntary organizations that operate independently in the community to complement the care and services provided by the health system. 12
The noted varying levels of consensus between the “hospice group” and “partner group” on several attributes suggest that knowledge gaps regarding the scope of hospice society care exist across different system levels, even among our panel of “experts.” This underscores the significance of having a consensus-based, province-wide definition for the hospice societies’ care.
Our environmental scan identified only three existing definitions of the role of hospice societies across Canada, and each description varied in clarity and scope.30 –32 None of these pre-exiting definitions comprehensively covered all the definition components identified as important in our process. Specifically, two of these pre-existing definitions focused on examples of the services provided, and the third described only the people served and aim of care. While the debate of whether standard definitions improve public understanding is beyond the scope of this paper, our definition draws attention to the unique role and approaches to care of hospice societies currently missing in existing definitions.
It is important to note that this definition is currently specific to hospice societies within BC, which operate within a unique environment of health policy, partnerships, and funding mechanisms that may differ significantly from those in other regions in Canada, and certainly beyond. The extent to which this definition can be generalizable to other health systems will be dependent on the unique local contexts of those hospice organizations. However, our hope is that our process and definition can inspire various settings despite the provincial focus of our process. The resulting definition showcases the value of hospice societies in improving the quality of life of members of their communities. For international communities who lack such community-based supports, this definition may serve as inspiration to join the hospice movement and develop similar networks of care. For international settings where hospice societies are present, this definition can serve as a reference and point of comparison for hospice philosophy and development.
There are several strengths to this study, one of which is the method chosen. The characteristics of deidentification of survey responses, multiple rounds of surveys, and provision of controlled feedback between each round make the Delphi technique a well-known approach to reaching consensus while reducing bias.22,33,34 Additionally, the Delphi technique has been previously used to define various terms within health and medicine.18,19,35 –39 Another strength is the make-up of our panel. Generally, it is understood that heterogeneity of the panel with regard to the knowledge and experiences lends validity to Delphi results, as agreement among a diverse panel indicates the findings are worthwhile.40,41 As our panel included members from hospice societies, members of the public, and palliative care experts, we can be confident the definition has captured important aspects of hospice society care from multiple levels of the health system.
Additionally, the size of our panel throughout survey rounds is larger than panel sizes previously identified as suitable for Delphi studies. Generally, the literature suggests that Delphi processes require a panel size of roughly 20–30 participants in order to provide stability and validity of results. 40 Given that our smallest panel size consisted of 38 members, we feel confident in our process and results.
Setting two consensus thresholds a priori at 75% is also noteworthy. Consensus rates in Delphi studies are usually arbitrarily chosen and may be anywhere from 51% to 100%. 40 Our selection of 75% consensus aligns with existing literature that identifies 75% as a commonly used level to define consensus, and is higher than or equal to previous literature defining palliative care terms that informed this study.18,19,42
Finally, our final definition versions reached extremely high levels of consensus. While literature suggests that Delphi processes rarely meet consensus levels of 100%, 33 our short version reached consensus of 100% among the “hospice group” (and 94% overall), and the full- and medium-length versions reached consensus levels of 85%.
Limitations of this study include limiting inclusion into the expert panel to those who can read and speak English. While our goal was to establish a definition that may be used across the public, government, and the health system, this limitation could pose challenges for non-English speakers, especially given the nuanced language in the definition that were made apparent by the panel. However, to minimize this potential barrier, we used plain language where possible and avoided complex terms that may be difficult to understand or translate to non-English speakers. Additionally, to ensure accessibility, two (of five) members of our research team who reviewed data and helped inform the common definition were not native English speakers. This allowed them to provide valuable insights from the perspective of someone for whom English is a second language.
Additionally, the attrition of the expert panel must be noted. The overall attrition rate was 38%, with a 12%, 14%, 10%, 13% attrition rate across surveys 3–6. However, attrition is a well-known risk in Delphi studies, and thus, our original panel size considerations were developed to account for this risk.33,40 Additionally, our attrition rates of 10%–14% across surveys are actually quite low, with attrition rates generally expected to be 20%–30% across surveys for Delphi studies. 40
Finally, despite our high levels of final consensus, it is important to acknowledge that a few members of the panel did not agree with the final short (6%, n = 2) or long/medium (15%, n = 5) versions.
Conclusion
We successfully reached consensus on a standard definition of the care provided by hospice societies in BC, including three different length versions. Our common definition offers unprecedented clarity and a shared understanding about the scope of care these societies provide. This clarity fulfills the action item originally called for by the Hospice Care Alliance Steering Committee, and during the writing of this manuscript, we worked to disseminate this definition to hospice societies and community partners through various presentations and events. We hope that the dissemination of the definition will increase the utilization of hospice society care by people living with serious illness and others impacted by life-limiting illness or death in BC. Additionally, this definition is set to guide advocacy efforts that aim to enhance the quality and sustainability of care provided by hospice societies across the province. We anticipate that the consistent use of this definition at all levels of their work within the hospice palliative care community and among policy makers will foster a common understanding and utilization of the full spectrum of care provided by hospice societies in BC.
Supplemental Material
sj-docx-1-pcr-10.1177_26323524251320104 – Supplemental material for Establishing a common definition for care provided by hospice societies in British Columbia, Canada: a Delphi process
Supplemental material, sj-docx-1-pcr-10.1177_26323524251320104 for Establishing a common definition for care provided by hospice societies in British Columbia, Canada: a Delphi process by Simon Anderson, Rachel Z Carter, Della Roberts, Pablita Thomas and Eman Hassan in Palliative Care and Social Practice
Footnotes
Acknowledgements
We would like to acknowledge the Hospice Care Alliance of British Columbia for their strategic advice given throughout the project phases. We also would like to thank the members of the BC Hospice Palliative Care Association, and all the hospice societies and other expert panel members that took part in our process. We would like to acknowledge that the University of British Columbia is located on the traditional, ancestral, unceded territory of the xwməθkwəy’əm (Musqueam) First Nation, and the work performed by the BC Centre for Palliative Care takes place across many unceded traditional territories of First Nations.
Declarations
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References
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