Terminal Delirium in Hospice: The Experiences and Perspectives of Caregivers Providing Care to Terminally Ill Patients in Home Settings

Abstract

Objectives:

Little is known about the experiences of caregivers who provide care to persons with terminal delirium (TD) in home settings. This scarcity of information is suggestive that further research is needed about care for hospice patients with delirium in the home and community.

Aim:

To elicit views, feelings, and end-of-life care experiences of primary caregivers assisting dying persons with TD in hospice at home.

Design:

Qualitative, exploratory, cross-sectional study design was chosen. In-depth semistructured interviews explored caregiver experiences in caring for persons with TD. Qualitative thematic framework analysis was used.

Participants:

Fifteen bereaved adult primary caregivers who received services from a hospice care program affiliated with a large nonprofit health system in the US Midwest.

Results:

Caregiver experiences were broad and reflected 4 major themes: symptomology, coping, effective and noneffective interventions, and support. The most distressing factors for caregivers were behaviors and symptomology of TD. They did not know what to say, how to respond, and how best to behave with someone who had delirium. Many caregivers had the impression that medication does not lessen delirium symptoms and that nonpharmacologic interventions are effective and beneficial only when they were important and meaningful to patients before delirium onset.

Conclusions:

This study added new knowledge from direct and personal perspectives of caregivers providing end-of-life care to patients at home. Understanding developed about provision of care to someone with TD in home hospice. Improved comprehension of caregiver experiences can help professional hospice and palliative care staff better prepare caregivers for when patients have TD.

Keywords

caregivers delirium experiences end-of-life care hospice home care interventions terminal delirium

Introduction

Terminal delirium (TD) is one of the most distressing symptoms for patients with serious illness,¹ It affects not only the patients but also their relatives and persons involved in their care. TD is characterized by disrupted cognition, agitation, altered consciousness, and hallucinations.^2,3 Many patients receiving palliative care (PC) and hospice care (HC) are affected by TD.^4-6

Despite being common at end of life (EOL), delirium is often unrecognized and misdiagnosed,⁷ resulting in significant distress and multidimensional suffering.⁸ In addition, it is often inappropriately treated,⁹ and clinicians’ diagnostic criteria for delirium are poorly understood.^10-12 Various interventions to treat delirium do not show clear evidence for efficacy.^3,12,13 Furthermore, professional health care workers have multiple challenges in caring for delirious patients.¹⁴ For caregivers with limited knowledge of delirium and without a professional medical background,¹⁵ challenges are increased in caring for a delirious patient in a home setting.

Although substantial research on delirium in PC exists, minimal studies have explored the experiences of caregivers taking care of hospice patients with delirium in the home.^6,16 Because evidence on TD is scarce and information is lacking about the needs of primary caregivers and the health care staff who support them,^17,18 research is needed on caring for hospice patients with TD in their homes. Furthermore, alternative research methods are needed to better understand the efficacy of interventions aimed at decreasing symptoms of delirium.¹⁹ The present study aimed to better understand such experiences and to elicit the perspectives of primary caregivers. Focus on caregivers in the home setting is especially important because the needs of caregivers in skilled facilities differ from those who care for dying persons at home.^20,21

Methods

Study Design and Participants

A qualitative, exploratory, cross-sectional study design was used. Adult bereaved primary caregivers who received services from HC programs affiliated with a large nonprofit health system in the US Midwest were invited to participate. Study criteria were care for patients with TD symptoms. Presence of delirium was identified in the electronic health record (EHR) and confirmed by 3 clinical professionals (physician, physician’s assistant, and registered nurse). Rigor was safeguarded with criteria of validity and reliability in qualitative research²² and criteria for evaluation of qualitative investigations.^23,24 Participants were contacted between 6 months and 2 years after death of the patient. The institutional review board classified the study as exempt status.

Data Collection

In-depth semistructured interviews were recorded and transcribed. Most interviews took place in the study participant’s home. Demographic and clinical characteristics were extracted from the patient’s EHR.

Data Analysis

This study performed qualitative thematic framework analysis based on research pedagogy, proposed by Ritchie and Lewis²⁵ and Bryman.²² Initial coding identified codes representative of caregivers; experiences were related to care of persons with TD. Additional analysis resulted in creation of a coding framework. Results were reviewed and corroborated by all research team members until consensus was reached. This study was performed in accordance with SRQR (Standards for Reporting Qualitative Research) guidelines.

Results

Fifteen caregivers (13 individuals and 1 dyad) participated in the present study. Participant characteristics and data related to their family member with TD are presented in Table 1. Analysis showed a range of experiences and identified 4 major themes that reflected caregiver experiences. They were symptomology, coping, effective and noneffective interventions, and support and were interwoven as understood through caregivers’ perspective (Figure 1). Examples of caregiver narratives are presented in Table 2.

Table 1.

Characteristics of Study Participants.

Participants (N = 15)	Value^a
Age, range, y	50-80
Sex
Female	12 (80.0)
Male	3 (20.0)
White ethnicity	15 (100.0)
Relationship to patient
Spouse/partner	9 (60.0)
Child	6 (40.0)
Length of care at home, median (range), d	38 (1-180)
Caregiver bereavement assessment risk
Low	13 (92.9)
Medium	1 (7.1)
High	0 (0.0)
Patient’s primary terminal disease/diagnosis
Cancer	9 (64.3)
COPD/other lung disease	2 (14.2)
Dementia	1 (7.1)
CHF/other heart disease	2 (14.2)
Place of patient’s death
Home	14 (100.0)^b
Nursing home	0 (0.0)
Hospital	0 (0.0)

Abbreviations: CHF, congestive heart failure; COPD, chronic obstructive pulmonary disease.

^a Values are presented as number (percentage) of patients unless specified otherwise.

^b Because 2 of the 15 participants formed a dyad, the number of patients receiving hospice care totalled 14.

Figure 1.

The main caregiver themes in terminal delirium care. The 3 themes are interwoven through the caregivers’ perspective.

Table 2.

Identified Themes and Examples of Narratives From Caregivers.

Theme	Narrative example
Symptomology	Participant No. 7: He was up most of the night and most of the day, but it was just like a switch was flipped.… And he was just a different person and very anxious, could not settle him down.He had a catheter at the end, and he just felt that he had to go to the bathroom, and he did not wanna lay in bed. He kept wanting to get up, and we kept trying to explain to him that he couldn’t get up and he had a catheter.…He was so, so anxious. It was like every 2 minutes he would be trying to get out of bed and wanted to get up and wanted to go to the bathroom, and it was just nonstop.Participant No. 6: One night I found him…I heard the word [proper name], and I jumped outta that bed. Well, that man hadn’t walked for, like, weeks. He was under the hospital bed, had taken off his…he was cath’d so no underwear, had taken off his T-shirt and was pinned underneath it, and the catheter was still inside of him. It didn’t come out.I don’t have any clue.…He was not with us.
Coping	Participant No. 1: He got in the bathroom, and he kept trying to get into shower…and I was just at a loss. No idea how to… Do you push, do you let them say whatever they want, do you…I didn’t have a clue what to do. [Proper name] kept saying, No, you can’t let him stand, he’s gonna fall. I’m thinking what else is he gonna break.…[Proper name] and I would take him under his arms and let him stand. And it was just…it was almost easier just letting him do that than…There was no reasoning. And I thought, If he falls…we’ll deal that.Participant No. 2: Do you tell her that you are seeing them as well just to let her know that she’s not crazy, because she thought she was just crazy. I mean, and it was…What do you tell somebody…?I didn’t say, No, Mom, I don’t see them…they must not really be there…you must really be crazy. No, you don’t wanna tell ‘em that.Participant No. 14: Then he says, “I’m going to go to heaven. You wanna go with me?” And then he says, “Jesus’s arms are open waiting for me. I don’t have a car, so I can’t get there so fast.”No. 1, my dad was so good at it that he understood his situation, he kept his sense of humor, his faith in God, and that’s what got him through it. The patient is the key to the whole situation—how they accept dying—and if you have family support and what kind of relationship you have with each other to get through something like this, because the stress of it and the anxiety and the physical turmoil it puts on you, if you didn’t have a sense of humor, if you didn’t have a relationship with each other and support, it would be very difficult.
Effective/noneffective interventions	Participant No. 10: [about medications] It didn’t seem like it was doing anything, or I wasn’t giving her enough…I was always a little leery, too.… I didn’t want to overdose somebody.Participant No. 7: I don’t know if that anxious activity was just withdrawal from all that medication, if that was part of it.…We couldn’t keep him settled down, and then hospice came, and they tried several different drugs to calm him down, and none of ‘em really worked.…So, it was tough seeing him like that ‘cause there was just nothing we could do to calm him down.Participant No. 14: [Proper name] came and stuck around and visited with them, but then after that, it was a very restless night, and we felt like there was too much activity, that it just kinda wore him out.…They told us how the quieter it was around the room, the darker it was to make things more peaceful and comfortable, not to come in and make a lot of noise, don’t talk real loud, don’t go in the other room and talk because then he’d feel like he’s missing out on something. Just little things like that to make the situation as peaceful for him as we could.The singing helped him a lot; the praying helped him very much. Every time we prayed, and he was just more peaceful, and he would sleep afterward, and he would sleep without agitation.…Maybe sometimes it’s talking, maybe sometimes it’s quiet time, maybe just holding their hand, stroking their arm, whatever it might be, but just being there so when he wakes up, he knows someone is there, what…First, you have to find out what that patient needs and then give it to ‘em, and so then it makes everybody feel better because when they’re peaceful and resting comfortably, it makes us feel so much better. We noticed that when we started giving that when he needed it, it helped him. He was so agitated at times and thrashing his arms and legs and kicking covers off and whatever, and as we were giving him that, that helped him get more comfortable.
Support	Participant No. 9: When [nurse’s name] came in, just the personal touch that she gave when she came in.… I mean, she would come in and sit on the floor. My mom would sit right here in this chair, and [nurse’s name] would come in and…sit on her knees and just talk with her and just one-on-one time, and it was amazing…’cause she broke that barrier that my mom had. She was…‘cause my mom would just…she was hard to talk to and get to know her.[Nurses’ names] were askin’ those questions and were lettin’ us know that you can just do this, you can just do this, you can just do this, and it was just…I mean, it was bam-bam-bam, just like that, and we needed it…I would think…if they’re coming from a religious background, like us, I would definitely…use your spirituality, use your faith, and…and add that to the mix, ‘cause it’s gonna help.When they were giving him the bed bath, then they changed all his bedding, the sheets and pillowcases and everything. And I think that was a boost for him. He felt better after that, you know. Who wouldn’t feel better after your bed being changed?Participant No. 10: They [hospice staff] always would compliment, oh you do such a good job, you keep her hair so nice, you keep her so clean, and that was encouraging to me. I mean, I was pretty sure I was still doing a good job, but just to hear it, because you have a lot on your plate.Participant No. 7: The last couple weeks were the worst, and so the boys came, and one of ‘em was always with me here to help take care of him. .,. They had flexible jobs, and their boss let ‘em off, and I could not have done it without ‘em.Participant No. 15: The music therapy came at 1 o’clock. She was a honey. She was very nice. She was a young lady, and she really connected with him and sang a lot of country-western songs he liked, and he just kept telling her he wants to go to the home in the sky.

Symptomology

Caregivers reported that the most distressing factors that affected their experience were the behaviors and symptomology associated with TD. Caregivers underwent emotional distress when patients showed behaviors not previously seen and when the dying person was not their normal self. Caregivers related that they felt as if they were caring for a person they did not know.

Emotional aspects were more upsetting than practical concerns. Distress increased when a patient had rapid onset of TD, which deprived the caregivers of the ability to communicate with patients and make EOL decisions together. Thereby, caregivers were left unprepared to care for the person who had lost the capability to express themself.

Caregivers did not understand the symbolic language used by patients. Not being able to communicate with the delirious person and not knowing how to respond to the behaviors and symptoms contributed to caregivers’ emotional distress.

In addition, caregivers had difficulty distinguishing symptoms of delirium from typical stages of the dying process. This difficulty, along with a lack of information about TD, increased caregiver stress. Minimal understanding of delirium resulted in caregivers attributing the behaviors to other symptoms or disease processes rather than recognizing them as TD.

Caregivers desired for the patients to remain at home. They did question whether they would be able to continue to provide care at home if symptoms of delirium, particularly restlessness, would have continued for a lengthy period. Caring for an individual who has anxiety, restlessness, and disorientation was described as emotionally and physically challenging and “like becoming a parent for the first time” (participant No. 10).

Coping

Caregivers were uncertain whether they should affirm, deny, or correct what the patient was experiencing and expressing. They had difficulty approaching their loved one who was not himself or herself. Feelings of inadequacy in how to assess the patient’s comfort further complicated the caregiver’s coping ability. Lack of understanding of TD, their personal exhaustion, and an inability to manage symptoms increased caregiver distress. Caregivers felt guilt, especially when delirious symptoms resulted in a fall or injury to the patient.

Caregivers had difficulty coping when additional doses of medication were needed. Some hesitated out of the fear that the medication would make the patient unresponsive or hasten death.

When distressing symptoms appeared, caregivers who had no opportunity to talk openly with the dying patient about their EOL wishes had more difficulty coping. They felt deprived of their chance to learn about the patient’s wishes and to have an open discussion about EOL. Caregivers described the arrival of delirium as “a first goodbye” (participant No. 14) and experienced loss before the patient’s death. They reported a strong correlation between the patient’s awareness of dying and comfort and the caregiver’s peace and coping.

Caregivers reported better coping if their loved ones had expressed readiness to die and were at peace with their physical decline. Seeing their loved one prepared and expressing such readiness before delirium allowed caregivers to feel more confident and less distressed by delirium symptoms.

The caregivers who had witnessed TD previously reported better coping because they recognized similar signs and symptoms from previous experiences. Similarly, caregivers found useful the advice of other caregivers and especially family members who had previous TD encounters. The caregivers who did not have training, preparation, or previous experience with delirium had more difficulty coping with it.

A good relationship between hospice staff and the patient eased caregiver distress. Observation of hospice staff providing care and their recognition of delirium as part of the dying process put caregivers at ease and allowed them to understand delirium as a stage of dying. It also increased a caregiver’s confidence and brought comfort. Caregivers also were comforted that hospice staff could establish a relationship with the patient despite the unusual behaviors of delirium.

Interventions

Literature review is suggestive that interventions to manage the effects of delirium are inconsistent and not always effective. The present research affirmed that suggestion. Study participants believed that pharmacologic interventions both had little effect on delirium symptoms and had limited therapeutic effect. Moreover, they had little knowledge of and unclear expectations about what to anticipate from interventions, including medications. Many of them recognized that medication made patients less responsive or lethargic but did not alleviate symptoms in an important way. Caregivers were unsure whether medications were helpful or contributed to delirium symptoms. This uncertainty was more pronounced as instruction complexity increased—for example, combinations of medications or instructions founded on a “keep trying” basis. Hence, caregivers sometimes believed that “nothing could help with delirium” (participant No. 7). When medication was effective, its most evident effect was patient relaxation.

Many caregivers were hesitant to administer medications for fear of overmedication. Fear and preoccupation with possible overdose made them cautious and tentative about administering increased medication dosages.

The most effective interventions were those that were meaningful and comforting to a patient before delirium. Personal connection of patients with their caregivers reduced patient anxiety, helped the patient relax, and decreased other symptoms of TD. Interventions such as touch, a familiar voice, reminiscing, and a comforting presence were able to reduce symptoms. However, this effect was only when the delirious patient had had a close relationship with the caregiver earlier. Of these interventions, the calming presence of a familiar person seemed most effective. Delirious patients became more agitated when the emotionally close person was not present. Similarly, the patient’s agitation and anxiety decreased when a close relative provided affirmation, a nonanxious presence, simple commands, and a calm approach to the patient during the most distressing symptoms (eg, visions, restlessness).

Spiritual interventions, such as visits from a clergyperson or chaplain, prayer sessions, or celebration of rituals, were effective and comforting but only when the interventions were previously familiar and meaningful to patient and caregiver. Patients who were religious or considered themselves spiritual benefited from such interventions during the delirium stage of dying. In instances when such interventions did not directly reduce the effects of delirium, they nevertheless were comforting to caregivers. Similarly, music was effective if it had been important and comforting to the patient in the past.

Caregivers reported that delirious patients benefited from a familiar and quiet environment. Being in a familiar place, surrounded by familiar persons, and with minimal home activity lessened the effects of delirium. Some caregivers reported a decrease of symptomology after personal care such as a bath, a change of bed linens, or gentle massage.

Support

Caregivers required support in order to continue caring for the patient with delirium and to cope with the patient’s distressing symptoms. Three major sources of support were family, hospice staff, and community.

Family Members

The greatest source of support was that offered by relatives, especially from the immediate family. Caregivers reported that they would not be able to care for a delirious patient at home without such support and involvement. In contrast, relatives who did not provide direct care often did not understand the disease progression or the need for increased medication dosages; thus they prompted frustration and emotional discomfort for primary caregivers.

Hospice Staff

Support from hospice agencies was crucial. The most important support was availability during crises. Awareness that a nurse was available during such times contributed to feelings of greater confidence and reassurance. Caregivers felt comfortable asking for help when a personal relationship was previously established between the patient and hospice staff.

Another source of support was education on disease progression and delirium. Many caregivers reported that although they were prepared and informed about the typical signs of the dying process, the majority (60%) were not familiar with TD. They expressed that these information needs were as important before delirium onset as during it. Those who were informed about delirium at the patient’s admission to hospice reported that this information needed to be refreshed, reinforced, and offered continuously during disease progression. They also needed information to be short, in writing, and to be more “forceful” (participant No. 15) because caregivers often have difficulties receiving information during stressful times.

A substantial contribution to caregivers’ self-efficacy was hospice support in the form of encouragement and affirmation. When caregivers were affirmed that they were providing good care to a delirious patient, they felt encouraged and their confidence increased.

Hospice aides had an important role in caregiver support as well, especially when they were able to establish a close and professional relationship with the patient. These visits provided respite for caregivers from personal concerns and comforted them as they observed their loved one trusting the aides.

Community

Caregivers found it more difficult to provide support to the delirious patients when they lacked support from a local community, especially neighbors or a church congregation. Any type of practical support was helpful and appreciated. Caregivers felt relief knowing they could focus more on the patient’s needs when they received community support. In the case of a caregiver who also held a job outside the home, support from their employer was important, especially when the employer allowed time off or flexible scheduling to care for a dying patient.

Discussion

The present study affirmed previous research about the experiences of caregivers caring for a family member with TD. It also added new knowledge from direct and personal perspectives of those who provide care at home.

This study showed that the most challenging aspects of caring for a delirious patient were lack of knowledge on how to respond to the abnormal behavior caused by delirium. Its results indicate that inadequate education on TD contributed to caregiver distress. Although caregivers are prepared and informed about the states of dying, education that relates specifically to TD seems lacking when caregivers need to be able to distinguish delirium from other illnesses.²⁶ The same lack of knowledge relates to the confusion of caregivers over distinguishing TD or misinterpreting it for EOL dreams, and visions.²⁷

Practical education is needed on how to approach the care of delirious patients and to respond to a patient’s visions, anxiety, and restlessness. Understanding of delirium—to recognize it and know how to respond to it—contributed to better caregiver coping and greater confidence. The increased confidence and improved coping skills also depended on 2 other factors—personal relationship with hospice staff and encouragement, which are in accordance with existing literature.^28,29 In such difficult caregiving situations as a patient’s delirium, caregivers cope better when they are affirmed in their role and when a personal professional relationship exists between them and hospice staff. These 2 elements need to be considered when providing HC instruction to caregivers because they also contribute to self-care and coping.

This study offered perspective on caregiver preference on how delirium education is received. The study showed that in stressful hospice situations, education is most desired when presented continuously throughout HC. To be effective, it needs to be progressive in both verbal and written forms in accordance with a caregiver’s individual learning dispositions and needs. The education also needs to take into consideration that stressful situations affect caregiver learning and assimilation of information. The particular needs of every caregiver should be considered, such as the specific circumstance or the caregiver’s values. Furthermore, attention needs to be paid to individual needs and coping, because some caregivers might benefit from different forms of support.³⁰

In regard to pharmacologic interventions, the caregivers’ perceptions were that medications do not substantially improve symptoms. This perception might be due to hesitation to increase a medication dosage for fear of overmedication or causing a patient’s death. Medication might not be effective if an inadequate dose is administered. Perpetuated belief that strong pain relievers and anxiety drugs might contribute to a hastened death makes caregivers reluctant to administer an effective dose of medication, despite the fact that research is not conclusive on mortality rate after administration of certain medications.³¹

Administration of additional and effective doses of medications is affected by caregivers not directly involved in the patient’s care, because they often do not understand medication administration. Primary caregivers were distressed between the recommendations of hospice professionals and of relatives not directly involved in care. It may be important for hospice agencies to offer education not only to the immediate caregivers but also to other family members less involved in direct care, because families are the greatest sources of support in providing care to delirious patients.

In regard to nonpharmacologic interventions, the present study was suggestive that interventions meaningful and important to the patient in the past had a positive effect on delirium symptoms. It might be ineffective, or even distressing, to offer interventions that were not comforting to the patient before delirium onset. Although the literature is inconclusive on whether such interventions are effective,^32,33 patients and their caregivers for whom spirituality and religion were important previously may find relief from religious and spiritual actions against the effects of delirium. Similarly, delirious patients benefit from a familiar quiet environment, which indicates that the best care might be provided in a familiar place by those whom the patient knows. Sensitivity also needs to be given to the fact that a disrupted familiar environment might contribute to increased symptoms of delirium.^34,35

Caregivers said they coped better when they received support in practical ways because this support allowed them to focus on the patient’s needs and have time for self-care. Support by local communities, neighbors, and employers was also important. Such support appeared to be valuable to hospice agencies as they partner with caregivers to provide EOL care. Hospice staff then might extend their educational offerings not only to involved caregivers but also to local communities.

Limitations

This study was conducted with a vulnerable population of participants who had lost a family member for whom they cared. Caregiver accounts were about experiences that happened several months before the study interviews. Possibly, their stories changed or evolved over that time.

A sole in-depth semistructured interview poses limits to elicitation of a caregiver’s experience and the ability to grasp the complete meaning of their difficult encounter with delirium. All participants were White and lived in rural or small urban areas. The majority of them (n = 13) were of the Judeo-Christian faith. This predominance might preclude generalization of findings beyond this sample. The participants might have represented a population of caregivers who participated in the study because of gratitude to hospice staff for the services they received. Possibly, caregivers who had a negative experience declined to participate.

Footnotes

Acknowledgments

The authors recognize the work of Sheila S. Skilling, Hospice Care, and William G. (Gary) Creech Chaplain Services, and are grateful for their important contribution to the study.

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 received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Jacek T. Soroka

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