Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model

Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient’s declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient’s death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver’s situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.

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Palliative Care Needs and Perspectives on Early Palliative Care from Individuals with COPD and their Family Caregivers: A Mixed Methods Study (FR441D)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2018.12.144 ◽

2019 ◽

Vol 57 (2) ◽

pp. 422-423

Author(s):

Anand Iyer ◽

James Dionne-Odom ◽

Lanier O'Hare ◽

Sandhya Mudumbi ◽

deNay Kirkpatrick ◽

...

Keyword(s):

Palliative Care ◽

Mixed Methods ◽

Family Caregivers ◽

Mixed Methods Study ◽

Care Needs ◽

Early Palliative Care ◽

Palliative Care Needs

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Oncology care model: Early palliative care experiences and outcomes.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.31_suppl.37 ◽

2017 ◽

Vol 35 (31_suppl) ◽

pp. 37-37 ◽

Cited By ~ 2

Author(s):

Pamela Spain ◽

Nathan West ◽

Stephanie Teixeira-Poit ◽

Elizabeth Schaefer ◽

Kerry Ketler

Keyword(s):

Decision Making ◽

Palliative Care ◽

End Of Life ◽

Shared Decision Making ◽

Life Quality ◽

Risk Scores ◽

Shared Decision ◽

Care Model ◽

Early Palliative Care ◽

Oncology Care

37 Background: Through the Oncology Care Model (OCM), the Center for Medicare & Medicaid Innovation at the Centers for Medicare & Medicaid Services aims to improve the effectiveness and efficiency of cancer care. OCM practices have committed to provide enhanced services to Medicare beneficiaries, including palliative care designed to optimize quality of life. This study examines if OCM practices engaging in early palliative care discussions have timely hospice referrals as well a lower aggressive end-of-life care and Medicare costs. Methods: During site visits to 30 OCM practices, we asked was How and when is palliative care introduced to patients? We used Medicare claims data to stratify the 30 practices into high or low performers based on 3 end-of-life quality measures scores. Next, we examined their scores on Cancer CAHPS shared decision making and Medicare expenditures, as well as what staff reported about the use of palliative care during site visits. Claims and CAHPS data encompass the first 6 months of OCM, July-December 2016. Site visits were conducted February - May 2017. Results: Patient risk scores were equal among practice groups. High Performers said: “Palliative care is introduced right off the bat. We provide information on hospice and palliative care so it’s not a word they find with end of life only. It’s a difficult conversation but you have to put it out there. As part of patient education, we say the differences between palliative care and hospice. Low Performers said: “Palliative care is introduced on a case by case basis. To transfer to an inpatient hospice, now you have to be on your last breath. Programs that get cut because they are not integral to the patients’ acute issues include palliative care. If hospice comes up, I pull palliative care at that point.” Conclusions: Early OCM results support growing evidence that palliative care shared decision making discussions are most beneficial near the time of cancer diagnosis. [Table: see text]

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