Caring for Dying Patients in the Nursing Home: Voices From Frontline Nursing Home Staff

Cagle, John G.; Unroe, Kathleen T.; Bunting, Morgan; Bernard, Brittany; Miller, Susan C.

doi:10.1016/j.jpainsymman.2016.08.022

Cited by 67 publications

(66 citation statements)

References 28 publications

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“…Previous studies have shown that people with dementia in a nursing home can suffer from the absence of relatives and caregivers at the end of life and can then, therefore, die in pain alone. This situation is ethically burdensome for nurses [39,40] and should be taken seriously by care management and policymakers who set the frameworks for care.…”

Section: Discussionmentioning

confidence: 99%

End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

Lundin¹,

Godskesen

2020

Preprint

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Background Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life. Methods The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with thirteen nurses from twelve nursing homes in Sweden. The results were analysed using thematic content analysis. Results The nurses described communicative, relational and organisational challenges. One major issue involved difficulties in communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia. Conclusions This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.

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Section: Discussionmentioning

confidence: 99%

End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

Lundin¹,

Godskesen

2020

Preprint

View full text Add to dashboard Cite

show abstract

“…Previous studies show that patients at an NH can suffer from the absence of relatives and caregivers at the end-of-life and therefore, die in pain alone. This situation is ethically burdensome for nurses (37,38) and should be taken seriously by care management and policymakers setting the framework for care.…”

Section: Discussionmentioning

confidence: 99%

Challenges when caring for end-of-life patients with advanced dementia and pain: A qualitative study in Swedish nursing homes

Godskesen

Lundin²

2019

Preprint

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Background Of Swedish people with advanced dementia, the majority dies in nursing homes. Pain is a common symptom in patients at the end-of-life, and patients with advanced dementia often experience suboptimal and inadequate pain management. Compared to cancer patients, they receive fewer palliative care interventions. Although being largely responsible for the care of these patients, few studies address the experiences of registered nurses. Therefore, this study aimed to describe nurses' experiences of caring for end-of-life patients with advanced dementia and pain. Methods This study had a descriptive and explorative design. Individual interviews with thirteen nurses from twelve nursing homes in Sweden were qualitative and semi-structured. The content was analysed through inductive content analysis. Results Nurses described communicative, relational and organisational challenges. A major issue was difficulties to communicate with the patient, resulting in uncertain pain assessments. Other difficulties were to separate pain from anxiety, to balance benefits and risks in morphine administration, and to create good relationships with health care personnel and relatives. Relatives could greatly influence the assessment and management of pain, both as interpreters of pain behaviour and by questioning the care given. Facilitators of good pain management were good communication and relations with health care staff and relatives, having extensive professional experience, and knowing the patient.Conclusions This study highlights the need for nursing homes to employ specialist-trained nurses, who have the appropriate knowledge and skills to deal with the challenges in caring for end-of-life patients with dementia and pain. Additionally, there should be resources and strategies available for providing information to patients’ family members and for involving them in the decisional process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administrative morphine or not.

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“…Concerns about quality of NH care and individuals' unhappiness with being in that setting, which serves as a safety net for people who do not have adequate support at home, may be reflected in these responses and thus not be a true measure of perceptions of the quality of hospice care provided. Also, the challenges of integrating hospice care into the NH setting have been described . Challenges with coordination of care plans or communication between hospice and NH staff can occur and could contribute to perceptions of poorer quality of care.…”

Section: Discussionmentioning

confidence: 99%

Quality of Hospice Care at Home Versus in an Assisted Living Facility or Nursing Home

Unroe

Stump

Effler

et al. 2018

J American Geriatrics Society

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There were significant differences in characteristics of individuals whose family members did and did not return surveys, which has implications for use of after-death surveys to evaluate hospice quality. Lower perceived quality of hospice care in NHs may be related to general dissatisfaction with receiving care in this setting. Survey results have the potential to set priorities for quality improvement, choice of provider, and potentially reimbursement. Underlying causes of differences of perceived quality in different settings of care should be examined.

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Caring for Dying Patients in the Nursing Home: Voices From Frontline Nursing Home Staff

Cited by 67 publications

References 28 publications

End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

Challenges when caring for end-of-life patients with advanced dementia and pain: A qualitative study in Swedish nursing homes

Quality of Hospice Care at Home Versus in an Assisted Living Facility or Nursing Home

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