Areas of Control Desired by Patients and Families Referred to Hospice Care: Perspectives of Hospice Admissions Staff

Abstract

Sense of control in end-of-life (EOL) care plays a critical role in the patient’s well-being. However, little is known about the areas of control essential to patients and families at a specific time point in the illness trajectory: when patients stop curative treatments and are referred to hospice. This study qualitatively explored such areas. Sixteen admissions staff members from four hospice agencies were interviewed about their perceptions of areas in which patients and families worried about losing control by accepting hospice. The thematic analysis revealed four areas of control: changes to medical care, health care provider changes, use of life-sustaining treatments, and daily life. Participants of this study put a great emphasis on consistently communicating their willingness to honor patients’ and families’ control over their care decisions and lives. Future research should examine control in EOL care among diverse populations and effectiveness of hospice staff’s strategies to address desire for control.

Keywords

hospice end-of-life control

Introduction

The importance of a sense of control—expectations or perceptions of “engaging in actions” to achieve desirable outcomes or avoid undesirable ones (Rodin, 1986, p. 141)—over the end-of-life (EOL) experiences in achieving quality of life has been evidenced in prior research (Detering, Hancock, Reade, & Silvester, 2010; Schroepfer, Noh, & Kavanaugh, 2009; Teno, Casey, Welch, & Edgman-Levitan, 2001; Volker, Kahn, & Penticuff, 2004a, 2004b). Individuals with advanced, life-limiting illnesses were found to desire control over various aspects of their care and personal life (Fisher & Colyer, 2009; Hermann, 2001; Richardson, Cert, MacLeod, & Kent, 2010; Schroepfer et al., 2009; Volker et al., 2004b), and lack of such control was identified as one of the core existential issues contributing to suffering in patients with advanced cancer (Wilson et al., 2007). Furthermore, a sense of control was considered an indicator of dignity among hospice patients (Brown, Johnston, & Östlund, 2011; Chochinov, Hack, McClement, Kristjanson, & Harlos, 2002; Enes, 2003). These prior studies advance our knowledge about the significant role played by a sense of control among various groups of seriously ill patients, not limited to a certain time point in the illness trajectory. Yet, such consideration of timing is important in that patients’ desire for control and areas of such desired control may differ depending on where they are in the illness progression, therefore calling for practitioners’ responses tailored to the differences. This study focuses on a particular time point in the illness trajectory—when patients discontinue curative treatment and contemplate hospice care—to identify specific areas in which patients and families worry about losing control when they are referred to hospice care. A deeper understanding of such areas can assist health care professionals in reducing patient and family anxiety about loss of control in considering hospice care. Therefore, the purpose of this study was to explore areas of control essential to patients and families referred to hospice care from the perspectives of hospice admissions staff.

Method

Sample

A purposive sampling was used to recruit hospice admissions staff members from Medicare-certified, free-standing hospice agencies in the state of Alabama. A letter of introduction was sent to the administrators of four hospice agencies as well as a follow-up call to provide further information about the study and answer any questions they had. All four hospice agencies agreed to participate and were provided with the study participant eligibility criteria: (a) currently employed full-time at a hospice agency, (b) currently on a hospice admissions team, and (c) served on the admissions team for a minimum of 1 year. The administrators confirmed that their admissions team was the first to meet with patients and families referred to their services. The principal investigator (PI) of this study contacted the 18 individuals identified by the administrators as meeting the eligibility. A total of 16 agreed to participate; the other two were not available due to scheduling conflicts during the study period.

Data Collection

Individual, face-to-face interviews were conducted by the PI from March 2014 to May 2015 in a private room in each hospice agency. The length of interview ranged from 45 to 70 min. A signed consent form was obtained before the interview began. The interview began with questions about the participant’s background information: age, race/ethnicity, religion, years of education, final degree, job title, years of hospice work and hospice admissions work, and average admissions visits per week. Participants were then asked open-ended questions about their discussions and interactions with patients and families during their admissions visits (Table 1). Probing questions, such as “Could you please tell me more about . . .?” were used to further explore aspects of their communications.

Table 1.

Interview Questions.

Open-ended questions asked to participants
1. Would you please tell me what you talk about with patients and families during your initial or admissions visits with them? For each topic mentioned, 1. Could you please talk more about that? 2. What concerns or questions do they usually have about it? 3. How do you discuss it with the patients and families? 2. How do you think your communications with the patients and families during your initial or admissions visits influence their decision to receive hospice care?

Open-ended questions asked to participants

1. Would you please tell me what you talk about with patients and families during your initial or admissions visits with them?
For each topic mentioned,
1. Could you please talk more about that?
2. What concerns or questions do they usually have about it?
3. How do you discuss it with the patients and families?
2. How do you think your communications with the patients and families during your initial or admissions visits influence their decision to receive hospice care?

Each interview was audio recorded, transcribed verbatim by a professional transcriptionist, and checked for accuracy by the PI and two research assistants. This study was approved by the Institutional Review Board (IRB) of the PI’s institution (IRB 13-OR-188-R3). Although participant agencies did not have an IRB, their administrators reviewed the study proposal and provided their approval.

Data Analysis

Participants’ background information was analyzed using descriptive statistics and is reported in Table 2. An inductive, thematic analysis was used for the qualitative interview data. The research team, consisting of the PI and two research assistants, immersed themselves in the data through independent and repeated readings of the entire interview transcripts before coding the scripts (Patton, 2014). They used open coding to approach the data with “as few preconceptions as possible” (Padgett, 2008, p. 152), and independently generated initial codes through a systematic process of comparisons and contrasts across interviews (Padgett, 2008). Following the initial, independent coding, the research team met to compare the codes and their definitions. Through discussions, they made clarification and revision to the codes and reached an agreement. Next, the research team independently grouped similar or related codes together to form categories in an iterative and reflective process (Patton, 2014). They met again to compare their categories and meanings of each category and discussed any disagreements until a full consensus was reached. This process yielded 10 categories: medications, care procedures, pain medicine, primary physician, specialists, do-not-resuscitate (DNR) order, advance directive, schedules, activities, and physical independence. The research team went back to the interview text under each of these 10 categories and reviewed them interpretively to look for themes. Finally, another meeting was held to compare themes and supporting quotes for each theme and reconcile any discrepancies. The agreed-upon themes, definition of each theme, and categories that constitute each theme are presented with exemplars in Table 3. Qualitative data of this study were stored and organized using the NVivo software program.

Table 2.

Demographics of Respondents.

Demographic characteristics	Number (%) of participants
Gender
Female	16 (100.0)
Male	0 (0.0)
Age (M, SD)	44.1, 9.5
Race
Non-Hispanic White	15 (93.7)
African American	1 (6.3)
Religion
Protestant	15 (93.7)
Catholic	1 (6.3)
Education (M, SD)	16.6, 1.5
Occupation
Social worker	5 (31.2)
Registered nursing	11 (68.8)
Years in hospice setting (M, SD)	7.7, 6.1
Years in admissions team (M, SD)	5.1, 4.0
Average number of visits per week (M, SD)	4.4, 4.3

Table 3.

Themes, Definition of Themes, Categories, and Exemplars.

Themes	Definition of themes	Categories	Exemplars
Changes to medical care	Control over changes to existing medical care that patients had been receiving prior to hospice transition	Medications, care procedures,pain medicine	“They [patients and families] sometimes think they have to give up oxygen, medications, all kind of things.”
Changes to medical care		Medications, care procedures,pain medicine	“[I try] to reassure them that their plan of care is up to what they want, and we’re not going to come in there and make them do things or change things that are working for them.”
Health care provider changes	Control over having the patient’s existing provider involved in care or keeping in contact with the provider	Primary physicians, specialists	“They [patients] think if they choose hospice care, they have to give up their physicians and would [only] use the hospice physician.”
Health care provider changes		Primary physicians, specialists	“We remind them [patients and families] their primary care physician is the one in charge of their medicines and we’re going to get our orders from them—starting things, stopping anything.”
Use of life-sustaining treatments	Control over decisions about life-sustaining treatments or measures	DNR order, advance directive	“Most people think that you have to be a do-not-resuscitate [to be eligible for hospice care].”
Use of life-sustaining treatments		DNR order, advance directive	“You can be a full code and be on hospice; Even with a DNR, if they change their mind and want this, they can say, ‘I want this done,’ and we do that. So nothing is final.”
Daily life	Control over nonmedical, everyday choices	Schedules, activities, physical independence	“They [families] can’t control the illness that’s happening. And they can’t control that Mom’s going right before their eyes, but they can control how the sheets are on the bed or what gown you put on her.”

Note. DNR = do-not-resuscitate.

Multiple methods, such as audit trail, peer debriefing, and member checking, were used to enhance the rigor of this study (Lincoln & Guba, 1985). The PI held bimonthly peer-debriefing meetings with a senior mentor and a peer researcher, both of whom had experiences in qualitative, EOL research, to share feedback on the data collection and analysis process. After the research team completed a preliminary analysis of the data and compiled the findings consisting of themes, descriptions of each theme, and supporting quotes, the PI contacted all 16 participants again and invited them to review and provide feedback. Six participants from four different agencies agreed to this process and received a copy of the findings. An individual meeting or a conference call with the PI followed to discuss their views of the accuracy and credibility of the findings and interpretations. All six participants agreed to the findings but made some recommendations for terminology used in describing each theme. They also provided additional description for each theme to make it clearer. Their recommendations and further elaboration were consolidated to make changes to the preliminary findings. A revised copy of findings was provided to the six participants and followed up by an individual conference call with the PI. With only minor changes suggested in the description of each theme, the revised findings were approved by all six participants.

Results

Participant Characteristics

All participants (n = 16) were female. The average age was 44 years. The majority (n = 15, 93.7%) were non-Hispanic Whites, and only one was African American. The majority (n = 15, 93.7%) identified themselves as Protestant. Their mean education level was 16.6 years. Eleven participants were registered nurses, and five were social workers. On average, they had worked in hospice for 8 years, and 5 years in admissions. They averaged a little above four admissions visits per week.

Identified Themes

Participants put a heavy focus on patients’ and families’ concern about losing control. They shared that so many of the patients and families they met during admissions visits were afraid that hospice would come in and take away their control, and therefore considered accepting hospice care as “giving up control.” Many of them had already experienced so much loss in control throughout the illness trajectory including their time in hospitals, as portrayed in a comment: “A lot of folks are used to being in the hospital and you are awakened all night long, blood pressure, taking blood, doing this [checking vitals]. You are on the terms of the staff.” This experience exacerbates patients’ and families’ hesitance to accept hospice, worrying that, by letting hospice come in, they may lose control even in their own homes. One participant, for example, described the concern by saying, “They [patients and families] are scared that we’re going to come in and mess with it [their care], that we’re going to force them to do something they don’t want to do or their loved one [doesn’t want].” Of many areas in which patients and families were afraid to lose control, four areas stood out: changes to medical care, health care provider changes, use of life-sustaining treatments, and daily life.

Theme 1: Changes to Medical Care

Participants encountered many patients and families who thought hospice care would take away their control over existing medical care that patients had been receiving, and make abrupt changes by stopping the existing regimen and starting new ones. Existing regimens most often included not only medications the patient had been on but also other care procedures, such as oxygen or intravenous (IV) fluid. One participant described her experience by saying, “They [patients and families] sometimes think they have to give up oxygen, medications, all kind of things.” Such concern about “giving up” was echoed in other comments such as, “A lot of times they [patients and families] want to know, ‘are you going to come in and change all my medicines?’” or “I think people have the perception that hospice comes in and you have to stop all your medicines.” Patients and families were concerned about being forced to discontinue their medical regimen and, at the same time, not being treated when other conditions, such as secondary infections—urinary tract infection or pneumonia, for instance—would arise. One participant described such perception as follows:

A lot of patients that I have dealt with, they feel like that when they are sent to hospice, basically they have been given up on or there are no more [treatments]—that we’re not going to treat things that come up.

Fear of being forced to take morphine further complicated patients’ and families’ anxiety over losing control of their medical care, as shown in another participant’s comment:

I mean, a lot of families are under the impression that you [hospice staff] are gonna come in, you’re gonna take their mother off of all her medications, and then you’re just bringing all this morphine and these things that are gonna kill her.

Participants shared their approach to address concerns about losing control of changes to medical care through giving assurances to patients and families, as shown in a comment, “[We communicate that] we do not take them [patients] off of medication. We do not bring in medication and give them, unless that family is aware of it and is okay with it, unless the doctor orders it.” This effort was echoed in another participant’s statement,

[I try] to reassure them [patients and families] that their plan of care is up to what they want, and we’re not going to come in there and make them do things or change things that are working for them.

In the case of families having a hard time stopping something that did not help the patient anymore, participants still let them try, rather than forcing them to stop. The following comment is a good example:

Family members would like to keep IV fluid and increase it even when it does not help. We let them do that if that would make them feel comfortable and give them the sense of “I tried.” It gives them peace of mind. When seeing it only makes it worse, such as swellings in extremity, family members decrease it. We try to assure them with their decision.

Participants also made sure patients and families understood that secondary infections are treated with antibiotics under hospice care, as indicated in a comment, “They [patients] are going to die from their cancer; we don’t want it to be from a secondary infection if we can prevent that.” One participant summarized her view of patients’ and families’ control over care by saying, “I try not to come in and overpower, because they’ve managed their care. They got themselves here and to and fro, and I don’t want to take that away. I still want them to have that power.”

Theme 2: Health Care Provider Changes

Losing their doctors was another area of loss of control that patients and families were concerned about. Participants felt that patients and families were reluctant to discontinue seeing their existing providers who they had a long relationship with. For example, one participant said she was often asked “if this [accepting hospice] means they [patients] can’t ever go back and see their doctor or specialist.” Similarly, another participant added by saying, “They [patients] think if they choose hospice care, they have to give up their physicians and would [only] use the hospice physician.” Loss of control in which doctor to see as well as what medical care to receive may not only undermine patients’ and families’ sense of autonomy in health care decision making but also harm their sense of security in patient and doctor relationships, as portrayed in a comment: “It [not seeing their doctors anymore] is kind of like you’re ripping their safety net. You’re just ripping them away from their safety net.” Participants described that many patients are “very attached to their physicians and still want to go see them.” A sudden loss of such relationship, therefore, would leave a “crushing” impact on them.

Participants, therefore, communicated to the patients and families that their doctors will still be involved in their care. One participant’s remark is a good example:

They [patients] have the right to choose and should, with every hospice, have the right to choose their attending [physician] and we encourage that attending to stay involved . . . even if they can’t get to that attending, we still are going to stay in constant contact with him and let him know what our plan of care is, have him involved in setting that plan of care for that patient and informing him as things change or as new needs come up. . . . Because a lot of them [patients] are very attached to the physician they have seen for many, many years, so we like to keep that relationship right up to the end so that that attending is aware of what’s going on and is driving that care for that patient.

A similar point was made by another participant, who said, “We remind them [patients and families] their primary care physician is the one in charge of their medicines and we’re going to get our orders from them—starting things, stopping anything.” Participants also addressed patients’ relationships with their specialists. They acknowledged that many patients need time to transition from their specialists to hospice care or time for “closure” or a “good-bye visit.” One participant shared a strategy to assist with patients’ closure in their relationship with specialists:

There are times you can contract with them [specialists], if it was something not related to their hospice diagnosis, so [that] they could go see them. If it’s hospice [hospice diagnosis] related, we can see if the doctor will call them [patients] and talk to them. They [patients] need the closure with them [specialists].

Theme 3: Use of Life-Sustaining Treatments

Decision about use of life-sustaining treatments was another area of control identified by participants. Patients and families were provided with advance directive forms during the hospice admissions visit and discussed wishes for or against life-sustaining treatments. A DNR order was also discussed in the meeting. Although some patients already had their advance directives prepared or were clear about their preferences for life-sustaining treatments, there were still many who were unsure about what they would want or whether they were ready to document them in writing. Those patients, participants said, were often the ones who worried whether they “were locked into their decisions” or “cannot change their mind” on the advance directives or DNR orders. In addition, participants described the misunderstanding patients and families often had: “Most people think that you have to be a do-not-resuscitate [to be eligible for hospice care]; you can be a full code and be on hospice.” This type of misconception may increase their hesitance to enroll in hospice care or further aggravate their concern of losing control if they do not want to sign one.

Participants described their communications with patients and families to reduce their concern about control in this area. They put a heavy emphasis on the reversibility of the patient’s choices regarding life-sustaining treatments or even the hospice care itself, as shown in a comment, “We always remind people, if at any point in hospice care you decide you want to revoke these services and seek aggressive treatment, that is certainly your right.” Another remark also confirms the reversibility of EOL decisions and patients’ and families’ control over the decisions:

[We tell patients and families] “You’re still in control of your care.” . . . I always let them know, too, even though you signed this paper [advance directive], these can change. Even with a DNR, if they change their mind and want this, they can say, “I want this done,” and we do that. So nothing is final.

Theme 4: Daily Life

While the first three areas were very much related to medical aspects of the patient’s life, the fourth theme was about the patient’s everyday choices, regardless of how trivial or mundane those were. Such choices included, for example, when to take a bath or shower, when to have a visitor, whether to stay in or get out of bed, or whether to go outside. Decisions of this type may not have major life-changing consequences; however, participants believed that patients and families could still feel that they are “in control” by asserting their autonomy in everyday choices. Maintaining a sense of control in everyday life becomes even more important when patients and families may already feel helpless and out of control about the illness and its progression. Such a view was represented in a participant’s remark:

They [families] can’t control the illness that’s happening. And they can’t control that Mom’s going right before their eyes, but they can control how the sheets are on the bed or what gown you put on her. So, we try to honor the wishes of whichever caregiver is there on that day as well as the patient as long as it’s something that’s not going to harm the patient.

Another participant spoke of an example about how she supports patients’ and families’ sense of control:

A lot of my caregivers and my patients have lost so much independence and so much power from the disease that I still want them to have independence and to feel you still have worth in what you can do. I want to partner with them and empower them to care for that patient; and for that patient to still feel like they have worth and can still do stuff. Like if I fill a med [medication] box, I either like a patient or family member with me, so we’re doing it together that I’m not just, “You sit here; I’ll do it.” So they have confidence that they can do what I’m doing in the box. Or let’s do this together.

In addition, recognizing physical independence is an essential contributor to patients’ sense of control, participants tried to promote independence by encouraging them to move around instead of being bed bound or to utilize extra help such as home health aides, when needed, in achieving activities of daily living (ADLs) or instrumental activities of daily living (IADLs). Likewise, respect for control and autonomy in patients’ and families’ everyday life resonated throughout participants’ discussions and is well summarized in a statement:

I think we underestimate the value of someone being able to understand right up front, “This is your home. We are privileged and honored guests in your home. We need to respect your schedule, your ideas, your routines, your family, [and] your pets.”

Discussion

Findings of this study offer an understanding of areas of control terminally ill patients and their families desire to maintain through the views of hospice admissions staff. Interviews with the 16 hospice admissions staff members provided information about the four areas of control and their strategies to address worries about loss of control in those areas.

The areas of control identified in this study included not only medical aspects of patients’ life but also their day-to-day activities. Three thematic areas—changes to medical care, health care provider changes, and use of life-sustaining treatments—encompassed many essential concerns patients and families had, ranging from having their control over medications taken away, to losing their existing health care providers and being forced to sign an advance directive when they are not ready yet. These themes are consistent with findings of prior studies on patient preferences for control in EOL care, which highlighted patient desire to engage in treatment decisions and other logistics of the care (Richardson et al., 2010; Schroepfer et al., 2009; Teno et al., 2001; Volker et al., 2004a, 2004b). What differentiates this study from prior research on patient control in EOL care is that it captured the areas of control that were specifically relevant to patients who were just referred to hospice care. For example, participants of this study reported that many patients and families expressed concerns about losing control of decision making on a DNR order or an advance directive or their doctors’ involvement in care after enrolling in hospice. For those who are referred to hospice care but are uncertain about it, concerns about loss of control may pose a substantial psychological barrier to accepting it, adding to other existing structural or cultural barriers to hospice care (Cagle et al., 2016; Selsky et al., 2012; Washington, Bickel-Swenson, & Stephens, 2008). Considering the continued research and practice efforts to alleviate the obstacles (Kirolos et al., 2014; Reese, 2011; Temkin-Greener, Li, Li, Segelman, & Mukamel, 2016; Townsend, March, & Kimball, 2017), concerns about losing control in certain areas in transitioning to hospice care should be given attention as a potential barrier to its use. If not appropriately addressed in a timely manner, preferably early in the referral process, such concerns may delay or discourage eligible patients’ enrolling in hospice care.

The fourth thematic area of control was everyday decisions for day-to-day activities. Participants of this study acknowledged that exercising control over details of everyday life was one way of confirming their self-worth among patients and families. Therefore, participants tried to preserve such control through respecting autonomy even in the smallest tasks and promoting independence in physical activities. Similar findings were reported in prior research. In their study of hospice patients and their control strategies, Schroepfer et al. (2009) found that independence, ADLs, and IADLs were among the main areas respondents sought to exercise control over. Volker et al. (2004a) interviewed oncology advance practice nurses, who identified their patients’ desire to fulfill everyday obligations in work and family life even in the end stage of diseases. Although these studies did not specifically target patients just referred to hospice or contemplating the option of hospice, their findings still provide insight into what are important to patients’ sense of control in EOL care and support the findings of this study. Therefore, one may argue that it is important to assess specific areas of control desired by patients and family in daily life early in the referral and enrollment process and have service tailored around the identified areas to lower the level of anxiety and make the transition process as smooth as possible.

Participants of this study consistently emphasized the importance of communicating their respect for and strong willingness to honor patients’ and families’ control over their care decisions and lives. Experiences with aggressive curative treatments and hospital stays oftentimes leave patients feeling helpless and out of control. Being aware of such experiences, participants ensured that they deliver the message, “You are still in control of your care,” to patients and families by focusing on “choices” they still had and could make and the fact that hospice would not “take away those choices.” It should be noted that participants paid attention to families’ desire for control as well as patients’, as family caregivers were heavily involved in every aspect of care and care decisions. Hence, they tried to ensure that families did not feel like hospice would come in to take their place and role as caregiver. One comment effectively represents participants’ overall efforts to respect patients’ and families’ control: “I let each patient and each family guide us [with their care] and we’re gonna walk the path with them.”

Study Limitations and Future Implications

Findings of this study contribute to advance our current knowledge about patient and family control in EOL care. However, some limitations are present. First, the voices of patients and families were not directly heard but through the hospice admissions staff. The areas of control might have been different if patients and families were asked the questions. Furthermore, if asked directly, patients and families could have elaborated each of the identified areas to a greater degree and suggested helpful strategies for hospice care providers from the perspectives of service recipients. Hence, future research examining the perspective of all three parties—patients, families, and hospice staff—is warranted. In addition, future investigation is called for to address differing or conflicting control needs between patients and families. Second, participants of this study were predominantly White. Considering the issue of control in EOL experiences may be influenced by cultural context and values (Schroepfer et al., 2009; Volker, 2005; Volker et al., 2004a, 2004b), hospice staff from other racial or cultural backgrounds might have provided different views. This lack of diversity in participants should be addressed in future studies on EOL care and control. Third, though hospice staff’s strategies to address desire for control are discussed in this study, their effectiveness in giving assurance to patients and families is unknown. Assessment efforts can be helpful to improve such strategies and, therefore, should be incorporated in future research.

Practice Implications

Findings of this study provide helpful guidance to EOL care practitioners, particularly hospice care providers. First, in their first meeting with patients and families referred to hospice care, providers should have in-depth discussions to assess their concerns of withdrawing from or making changes to existing medical care or regimen. It is important to ensure that patients and families understand why such change is needed and how it will improve the patient’s quality of life. In this process, input from the patient’s previous care providers, if needed, may be helpful to alleviate the lingering uncertainty and hesitance patients and families often feel in transitioning from curative to comfort care and provide them with further assurance. Such input and communication can be best provided based upon a collaborative partnership between the patient’s previous health care providers and the hospice care team. Also, hospice care providers may express their willingness to accommodate or maintain some previous care measures as far as they do not conflict with the comfort care or add to the patient’s pain and discomfort. Through these approaches, providers may help patients and families maintain a sense of control in care and reduce their anxiety and hesitance about accepting hospice care. Second, while practitioners should be keenly aware of patient and family need for control, they should also pay attention to any discrepancies or conflict between patients and families regarding control, and address them in a way that honors the patient’s EOL wishes. Although they may agree to the point that the patient’s well-being is the utmost priority, families may hold different views from the patient’s when it comes to what is best for the patient. In such cases, practitioners should facilitate open discussions among patients and families and provide advocacy by clarifying patient needs and preferences. Third, in addition to endeavors to understand areas of control, practitioners should seek to gain insight into patients’ preferred strategies to exercise control in each area. For example, some patients may want to directly make decisions about life-sustaining treatments, while they prefer indirect control over some aspects of previous medical care or daily life through their family. Services should be provided in such a way that areas of control and preferred control strategy in each area are respected. As with areas of control, differences in preferred strategies may exist between the patient and family, calling for practitioners’ support and advocacy in case of conflicts. Fourth, correct knowledge and information about hospice care are critical to clarify patients’ and families’ misconceptions and enable them to confidently exercise their control over various aspects of EOL care. For example, misunderstanding about signing a DNR order or an advance directive as a requirement for hospice care may increase their concerns about loss of control over EOL decisions and deter their use of hospice care. Therefore, their informational needs in hospice and other EOL care in relation to their control needs should be closely examined so that education can be provided accordingly. Finally, patients’ and families’ daily routine and preferences for assistance with ADLs and IADLs should be closely assessed early in transition to hospice care. Care services need to be coordinated in such a way that patients and families do not feel deprived of their control over daily life.

Conclusion

This study qualitatively explored hospice admissions staff’s perceptions about areas of control important to patients and families. Maintaining control in both medical decisions and everyday life was found to be critical among the terminally ill and their caregivers in receiving EOL care such as hospice. Health care professionals should focus on practice strategies to ensure that their desire for control is recognized and respected. Furthermore, future studies should continue to examine patients’ and family’s control in a diverse cultural context and address discrepancies and conflicts in their control needs.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by The University of Alabama Research Grants Committee Award (RG14490).

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