Informal Caregiving of Hospice Patients

Pottie, Colin G.; Burch, Karen A.; Thomas, Lori P. Montross; Irwin, Scott A.

doi:10.1089/jpm.2013.0196

Cited by 61 publications

(57 citation statements)

References 77 publications

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“…23,24 Therefore, it is not uncommon for many to experience significant anxiety, depression, and stress during the caregiving process. 25 Our analysis reveals that caregivers with high burden levels may decide to hospitalize patients because they feel overwhelmed. While hospice care aims to be comprehensive, standard home hospice care may not be sufficient for all patients and caregivers.…”

Section: Challenges Faced By Caregiversmentioning

confidence: 92%

“…Many patients trust their physicians and highly value that continuity. 16,[23][24][25] Further research is needed to understand how patients' and families' preferences to maintain care with their physicians influences hospitalization patterns. Developing ways to better integrate nonhospice physicians within hospice care may reduce patients' and families' desire to be hospitalized when care can be delivered within hospice.…”

Section: Creating Better Transitions Into Hospicementioning

confidence: 99%

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Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives

PhongtankuelVeerawat

ScherbanBenjamin

ReidManney

et al. 2016

Journal of Palliative Medicine

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Background: Hospice provides an opportunity for patients to receive care at home at the end of life (EOL); however, approximately 25% of patients who disenroll from hospice are hospitalized. Hospitalization can lead to poor care transitions and result in unwarranted care and adverse patient outcomes. Research examining reasons for hospitalization in this patient population is limited. Objective: The objective was to understand the reasons for hospitalization among home hospice patients through the perspectives of hospice interdisciplinary team (IDT) members. Methods: This was a qualitative study using a grounded theory approach. Seven semistructured focus group were conducted to solicit reasons for hospitalization among home hospice patients. Participants consisted of 73 home hospice IDT members from a not-for-profit hospice agency in New York City. Focus group recordings were transcribed and analyzed using content analysis. Results: Eight major themes were identified: (1) not fully understanding hospice, (2) lack of clarity about disease prognosis, (3) desire to continue receiving care from nonhospice physicians and hospital, (4) caregiver burden, (5) distressing/difficult-to-manage signs and symptoms, (6) caregivers' reluctance to administer morphine, (7) 911's faster response time compared to hospice, and (8) families' difficulty accepting patients' mortality. Conclusions: Reasons for hospitalization in home hospice patients are multifactorial and complex. Our study highlights barriers and challenges that patients, families, physicians, and hospices face around home hospice care and hospitalization. More research is needed to elucidate these issues and develop viable strategies to address them.

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Section: Challenges Faced By Caregiversmentioning

confidence: 92%

Section: Creating Better Transitions Into Hospicementioning

confidence: 99%

Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives

PhongtankuelVeerawat

ScherbanBenjamin

ReidManney

et al. 2016

Journal of Palliative Medicine

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“…124,125 Limited and conflicting evidence supports the ability of palliative care programs to reduce burden among caregivers of patients with advanced HF. 126,127 Abernethy et al 120 found that bereaved caregivers of patients receiving specialized palliative care services for a terminal illness were more likely to report having "moved on" after the loss of their loved one.…”

Section: Caregiver Outcomesmentioning

confidence: 99%

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

Braun¹,

Grady²,

Kutner³

et al. 2016

Circulation

193

143

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AbstrAct:The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidencebased care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient-and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payerprovider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements.

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“…These findings meet the "Research Recommendations for Improving the Assessment of the Prevalence and Burden of Informal Cancer Caregiving" [86], emphasizing the need to direct attention towards the most vulnerable caregivers of cancer patients, such as those socially isolated, living in rural areas, or with low socioeconomic status. Social isolation and low appraisal of caregiving, along with depression, financial stress, and lack of choice in being a caregiver, are important risk factors of caregiver strain, affecting their burden perception [87,88].…”

Section: Discussionmentioning

confidence: 99%

Telemedicine Use Among Caregivers of Cancer Patients: Systematic Review (Preprint)

Marzorati¹,

Renzi²,

Russell-Edu³

et al. 2018

Preprint

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Informal Caregiving of Hospice Patients

Cited by 61 publications

References 77 publications

Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives

Why Do Home Hospice Patients Return to the Hospital? A Study of Hospice Provider Perspectives

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association

Telemedicine Use Among Caregivers of Cancer Patients: Systematic Review (Preprint)

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