Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants’ responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient’s terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient’s needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs’ expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

Patient and Caregiver Symptom Trajectory: The Last 2 Months of Cancer Home Hospice

Patient symptom management is a fundamental goal of cancer home hospice care. However, informal family caregivers, who are primarily responsible for daily patient care, also experience negative symptoms, especially at the end of the patient’s life. While research has attended to patient symptom progression in home hospice, little research focuses on caregiver symptoms. To address this, we examined the frequency of both patient and caregiver symptoms to determine how these symptoms change in the last two months of the patient’s life. Sixty-three cancer hospice caregivers from 4 US states prospectively reported daily patient and caregiver symptoms via an Interactive Voice Response phone system. We analyzed data from up to the last 60 days of the patient’s life. Most caregivers were female (71.4%), Caucasian (88.9%), spouses of the patient (46%); average age was 59 years old (SD=13). Patients were mostly female (54%), with diverse solid tumor cancer diagnoses, and 72 years old (SD=11) on average. Most commonly reported moderate-to-severe patient symptoms were fatigue (67%), pain (47.5%), and loss in appetite (42.3%). Most common moderate-to-severe caregiver symptoms were fatigue (57.8%), trouble sleeping (45.1%), anxiety (52%), and depression (40.4%). Patient and caregiver symptoms were significantly correlated (Pearson r = .51, p<.001). Mixed-effects models found that both patient and caregiver symptoms (collapsed by week) worsened as patient death approached (ps <.01). Researchers and clinicians who are aware of the strong relationship between patient and caregiver symptoms are best able to address caregiver symptoms as part of hospice care, particularly as patient death approaches.

The Burden of Having to Wonder: Minority Stress Experiences of LGBTQ+ Hospice Family Caregivers

Home hospice care relies heavily on informal caregivers, often patients’ family and close others. Hospice family caregivers report stress, burden, and unmet support needs associated with poor health and bereavement outcomes. These outcomes are sensitive to the quality of interactions with professional hospice providers, especially for historically marginalized groups, yet little research examines experiences of LGBTQ+ hospice family caregivers. Informed by minority stress theory, we conducted in-depth interviews with LGBTQ+ home hospice family caregivers across the U.S. (N=20). Participants reported demographics and described their caregiving experiences including interactions with hospice providers. Interviews were audio-recorded, transcribed, and content-analyzed. Participants were mostly white (n=15, 75%), non-Hispanic (n=19, 95%), cisgender (n=19, 95%), gender binary (n=19, 95%), lesbian (n=10, 50%), women (n=12, 60%); average age was 52.3 (range 25-67, SD=13.84). Along with known end-of-life caregiving stressors, participants experienced minority stress that complicated caregiver-provider communication. Distal stressors included lack of LGBTQ+ competent resources, inadequate legal protections, providers’ assumptions about relationships, and difficult dynamics with unaccepting relatives. Proximal stressors included perceived risks of disclosure, expectation of poor treatment, feeling the need to modify presentation of self or home, and wondering whether negative provider interactions were due to being LGBTQ+. This generated a background level of uncertainty, caution, and concern that was particularly distressing in the home setting. Minority stress affects LGBTQ+ people across the lifespan and generates added burdens and support needs for hospice family caregivers. Providers who understand these effects are better positioned to deliver safe, effective care to all families at end of life.

March 23, 2005—Getting Finished

Nell has taken a major step toward her goal of leaving this world peacefully by initiating increased contact with home hospice care. She has changed physically even more since our last visit three weeks ago. Her tumor is growing and making it more difficult for her to travel by car. However, she is able to move around her apartment with little difficulty. She has had many interactions with healthcare providers, some disturbing but most helpful. She reiterates her disappointment at her doctor’s revelation that death is not yet on the horizon. She has spiritual musings as well as questions about her own life force, which may be keeping her on earth even though she is ready to leave. She has noticed an increasing irritability, related to the discomfort she feels with the size of her tumor. She is learning to adjust her medications and habits in order to reduce pain. Telling her story to a listener is a form of medicine that gives her comfort.

A rare case of right shoulder pain

We present a case of a 19-year-old man with right shoulder pain lasting for several months. Abdominal imaging revealed a right adrenal mass directly invading vascular structures into the right atrium. Widespread metastatic adrenocortical carcinoma was confirmed on biopsy. He opted for palliative mitotane treatment with home hospice care. This case emphasises the importance of considering abdominal masses in the differential diagnosis of persistent right shoulder pain after common causes have been ruled out. Early diagnosis could be potentially life-saving.

A non-lab nomogram of survival prediction in home hospice care patients with gastrointestinal cancer

Background Patients suffering from gastrointestinal cancer comprise a large group receiving home hospice care in China, however, little is known about the prediction of their survival time. This study aimed to develop a gastrointestinal cancer-specific non-lab nomogram predicting survival time in home-based hospice. Methods We retrospectively studied the patients with gastrointestinal cancer from a home-based hospice between 2008 and 2018. General baseline characteristics, disease-related characteristics, and related assessment scale scores were collected from the case records. The data were randomly split into a training set (75%) for developing a predictive nomogram and a testing set (25%) for validation. A non-lab nomogram predicting the 30-day and 60-day survival probability was created using the least absolute shrinkage and selection operator (LASSO) Cox regression. We evaluated the performance of our predictive model by means of the area under receiver operating characteristic curve (AUC) and calibration curve. Results A total of 1618 patients were included and divided into two sets: 1214 patients (110 censored) as training dataset and 404 patients (33 censored) as testing dataset. The median survival time for overall included patients was 35 days (IQR, 17–66). The 5 most significant prognostic variables were identified to construct the nomogram among all 28 initial variables, including Karnofsky Performance Status (KPS), abdominal distention, edema, quality of life (QOL), and duration of pain. In training dataset validation, the AUC at 30 days and 60 days were 0.723 (95% CI, 0.694–0.753) and 0.733 (95% CI, 0.702–0.763), respectively. Similarly, the AUC value was 0.724 (0.673–0.774) at 30 days and 0.725 (0.672–0.778) at 60 days in the testing dataset validation. Further, the calibration curves revealed good agreement between the nomogram predictions and actual observations in both the training and testing dataset. Conclusion This non-lab nomogram may be a useful clinical tool. It needs prospective multicenter validation as well as testing with Chinese clinicians in charge of hospice patients with gastrointestinal cancer to assess acceptability and usability.

Acceptability of AAI from the Perspective of Elderly Clients, Family Members, and Staff—A Pilot Study

Although animal-assisted interventions (AAIs) are increasingly part of comprehensive rehabilitation and many of its effects are already well described, the methodology for performing AAI depends on the specific patient, animal, and treatment objective. Acceptability of AAI from all involved members is a little explored area. Thus, 214 respondents (32 AAI clients, 146 family members, and 36 healthcare and social care workers; 98 males, 116 females; mean age 46.3 years (±16.5 SD)) completed a list of statements focused on AAI with a dog. This list was distributed directly in nursing homes, retirement homes, and in households with home hospice care. All statements were rated on a Likert scale of 0–3. The results show that AAI is generally very well received, with over 90% of respondents considering AAI to be beneficial. The perception of AAI and trusting the handler with their dog was evaluated very positively, as well as possible concerns about hygiene. The results were in many cases affected by demographic factors of the respondents (age, gender, role in AAI, education, and size of settlement). It seems appropriate in future studies to focus on the attitude of individual groups, and thus advance the methodology of implementing AAI.