Large Hospice Research Articles

Diverse Models of Home-Based Palliative Care: Key Principles from Four Programs for Impact on Quality and Cost (SA522)

•Describe the role of home-based palliative care in the continuum of palliative care programs.•Describe the characteristics of diverse successful home-based palliative care models.•Explain the challenges and opportunities of available home-based palliative care models in order to determine which characteristics best align with your community. Not so long ago palliative care was available only through the Medicare hospice benefit for the terminally ill. Now, hospital palliative care is a routine service, especially in larger hospitals that serve the sickest and most complex patients. Yet, we are far from securing relative access to palliative care for our nation's seriously ill patients and their families because the great majority of them are neither dying nor in the hospital. In order to ensure access to palliative care where people need it, we must help communities build palliative care services that go to the patient and their family where they live. Home-based palliative care is the future of quality medical care for the sickest and costliest patients and their families. Several home-based palliative care programs across the country are delivering this service to their patients; they serve as examples for others who want to implement this critical service for seriously ill patients. Panelists in this session will share replicable principles and practices from four pioneering home-based palliative care programs providing services to seriously ill patients in a variety of living situations—including their homes, assisted living residences, skilled nursing facilities, and homeless shelters. At the forefront of community-based palliative care, these programs are leaders in working with payers and in providing innovative, cost-effective approaches to providing quality home-based palliative care. They represent a variety of patient populations, geographic settings, payment models, and organizational homes: a large hospice and palliative care organization; a large home health and hospice organization; an integrated multispecialty clinician group; and a health care system. Program leaders will share how they aligned their programs with the needs and priorities of patients, families, community partners, and program stakeholders, as well as key principles and challenges and opportunities encountered. An interactive Q & A session will follow.

The Effects of a Single Session of Music Therapy on the Agitated Behaviors of Patients Receiving Hospice Care.

Research suggests that agitation is a common symptom for hospice patients, but while studies have examined the outcomes of music therapy on the agitated behaviors of patients in other settings, none have addressed this symptom in patients with terminal illnesses. The study objective was to determine whether a single session of music therapy provided by a board certified music therapist and using the entrainment principle would decrease agitation in hospice patients. This pilot study was a single-blind, pretest/posttest design. Music therapists used the principle of entrainment with live music during the treatment session. Subjects included in the study were 77 patients at a large hospice in south Florida with documented agitation. Agitation was measured using the Overt Agitation Severity Scale (OASS) for 5 minutes prior to and 5 minutes following a 20 minute music therapy intervention. Results from 73 participants were analyzed with a mean difference of -5.77 points from pretest to posttest. Results indicating a decrease in agitation were statistically significant (p < 0.001) for the entire sample. Age, gender, location, and diagnosis were found to have no significant effects on the results. Results indicate that a single session of music therapy using the entrainment principle may be an effective treatment for hospice patients experiencing agitation.

Impact of a hospice rapid response service on preferred place of death, and costs.

BackgroundMany people with a terminal illness would prefer to die at home. A new palliative rapid response service (RRS) provided by a large hospice provider in South East England was evaluated (2010) to provide evidence of impact on achieving preferred place of death and costs. The RRS was delivered by a team of trained health care assistants and available 24/7. The purpose of this study was to (i) compare the characteristics of RRS users and non-users, (ii) explore differences in the proportions of users and non-users dying in the place of their choice, (iii) monitor the whole system service utilisation of users and non-users, and compare costs.MethodsAll hospice patients who died with a preferred place of death recorded during an 18 month period were included. Data (demographic, preferences for place of death) were obtained from hospice records. Dying in preferred place was modelled using stepwise logistic regression analysis. Service use data (period between referral to hospice and death) were obtained from general practitioners, community providers, hospitals, social services, hospice, and costs calculated using validated national tariffs.ResultsOf 688 patients referred to the hospice when the RRS was operational, 247 (35.9 %) used it. Higher proportions of RRS users than non-users lived in their own homes with a co-resident carer (40.3 % vs. 23.7 %); more non-users lived alone or in residential care (58.8 % vs. 76.3 %). Chances of dying in the preferred place were enhanced 2.1 times by being a RRS user, compared to a non-user, and 1.5 times by having a co-resident carer, compared to living at home alone or in a care home. Total service costs did not differ between users and non-users, except when referred to hospice very close to death (users had higher costs).ConclusionsUse of the RRS was associated with increased likelihood of dying in the preferred place. The RRS is cost neutral.Trial registrationCurrent controlled trials ISRCTN32119670, 22 June 2012.

Parental relationships beyond the grave: Adolescents' descriptions of continued bonds.

Many people experience an ongoing relationship with a deceased loved one. This is called a "continued bond." However, little is known about the adolescent experience with continued bonds once a parent has died. This study describes three ways that adolescents continue their relationship with a parent after that parent's death. Individual semistructured interviews were conducted with nine adolescent children of deceased hospice patients from a large hospice in northeastern Ohio as part of a larger grounded-theory study. The interviews were audiotaped, transcribed verbatim, and analyzed using a conventional content analysis approach. Adolescents continued their bonds with deceased parents in one of three ways: experiencing encounters with the deceased parent, listening to the inner guide of the parent, and keeping mementos to remind them of the parent. The ways that the adolescents continued their bond with a deceased parent assisted them in creating meaning out of their loss and adjusting to life without that parent. Our results can be used by health professionals and parents to help adolescents after a parent has died.

Physicians' Reflections on Death and Dying on Completion of a Palliative Medicine Fellowship

ContextPatient and family dissatisfaction may result when they are not satisfied with the physician/patient interaction, although the physician may feel he/she worked hard to provide information to the patient and family. New approaches to visual analysis can 1) identify significant insights from physicians' personal and clinical experiences in providing compassionate palliative care and end-of-life care and 2) provide an effective and practical vehicle for communicating with patients, their families, and other professional caregivers. ObjectivesTo elucidate palliative physicians' core experiences with their patients' dying and death. MethodsA qualitative visual analysis was conducted on 75 images created by physicians completing a one year palliative medicine fellowship. These images are part of a larger personal reflections narratives database of images, text, and auditory projects prepared by students, interns, and fellows completing training in palliative care at a large hospice provider. Participation in the personal reflections project is a required part of the training program, with the goal of blending clinical competencies with lived experiences of caring for the dying. ResultsTwo categories of visual metaphors underlying the images were identified, with both expressing the relationship and transitional dynamics of life and death: portraits (n = 30, 40%) and nature (n = 45, 60%). Conventional images representing anxiety, pain, or other dimensions of suffering commonly associated with death and dying were virtually absent (n = 2, 0.03%). ConclusionWe propose the communication of positive, hopeful, even peaceful perceptions of death and dying was likely the result of effective personal and professional skills gained through physicians' clinical experiences during the fellowship.

Two worlds: Adolescents' strategies for managing life with a parent in hospice.

This study aimed to generate an explanatory model of the coping strategies that adolescents employ to manage the stressors they experience in the final months of their ill parent's life and shortly after their death. The sample included 26 families of adolescents with a parent receiving care in a large hospice program in northeastern Ohio. A semistructured interview was conducted with 14 ill parents, 17 well parents/guardians, and 30 of their adolescent children before the parent's death and, additionally, with 6 of these families after the death. The interviews were audiotaped, transcribed verbatim, and analyzed using a grounded-theory approach. The participants described two worlds that constituted the lives of the adolescents: the well world of normal adolescence and the ill world of having a parent near the end of life. The adolescents experienced a common challenge of living in two worlds and responded to the challenge with a process we labeled "managing two worlds." Five stages through which adolescents manage their worlds were identified: keeping the ill world and the well world separate; having the ill world intrude into the well world; moving between the ill world and the well world; being immersed in the ill world; and returning to the well world having been changed by the ill world. The explanatory model of "managing two worlds" outlines a complex and nuanced process that changes over time. The model can be used by health professionals who seek to help adolescents navigate this critical time when their parents are dying or have recently died. These results can also be used to inform the development of interventions that assist families with strategies tailored to an adolescent's specific needs. Future research should investigate associations among the process of "managing two worlds" and outcomes related to adolescent bereavement.

Massage, Music, and Art Therapy in Hospice: Results of a National Survey

ContextComplementary and alternative medicine (CAM) provides clinical benefits to hospice patients, including decreased pain and improved quality of life. Yet little is known about the extent to which U.S. hospices employ CAM therapists. ObjectivesTo report the most recent national data regarding the inclusion of art, massage, and music therapists on hospice interdisciplinary teams and how CAM therapist staffing varies by hospice characteristics. MethodsA national cross-sectional survey of a random sample of hospices (n = 591; 84% response rate) from September 2008 to November 2009. ResultsTwenty-nine percent of hospices (169 of 591) reported employing an art, massage, or music therapist. Of those hospices, 74% employed a massage therapist, 53% a music therapist, and 22% an art therapist, and 42% expected the therapist to attend interdisciplinary staff meetings, indicating a significant role for these therapists on the patient's care team. In adjusted analyses, larger hospices compared with smaller hospices had significantly higher odds of employing a CAM therapist (adjusted odds ratio 6.38; 95% CI 3.40, 11.99) and for-profit hospices had lower odds of employing a CAM therapist compared with nonprofit hospices (adjusted odds ratio 0.52; 95% CI 0.32, 0.85). Forty-four percent of hospices in the Mountain/Pacific region reported employing a CAM therapist vs. 17% in the South Central region. ConclusionLess than one-third of U.S. hospices employ art, massage, or music therapists despite the benefits these services may provide to patients and families. A higher proportion of large hospices, nonprofit hospices, and hospices in the Mountain/Pacific region employ CAM therapists, indicating differential access to these important services.

What Is Different About Patients With Hematologic Malignancies? A Retrospective Cohort Study of Cancer Patients Referred to a Hospice Research Network

ContextAlthough much is known about solid tumor patients who use hospice, the hematologic malignancies hospice population is inadequately described. ObjectivesTo compare the characteristics and outcomes of hospice patients with hematologic malignancies to those with solid tumors. MethodsWe extracted electronic patient data (2008–2012) from a large hospice network (Coalition of Hospices Organized to Investigate Comparative Effectiveness) and used bivariate analyses to describe between-group differences. ResultsIn total, 48,147 patients with cancer were admitted during the study period; 3518 (7.3%) had a hematologic malignancy. These patients had significantly worse Palliative Performance Scale scores (32% vs. 24% were below 40; P < 0.001) and shorter lengths of stay (median 11 vs. 19 days; P < 0.001). They were more likely to die within 24 hours of hospice enrollment (10.9% vs. 6.8%; odds ratio [OR] 1.66; 95% CI 1.49, 1.86; P < 0.001) or within seven days (36% vs. 25.1%; OR 1.68; 95% CI 1.56, 1.81; P < 0.001) and were more likely to receive hospice services in an inpatient or nursing home setting (OR 1.34; 95% CI 1.16, 1.56 and OR 1.54; 95% CI 1.39, 1.72; both P < 0.001). Among hematologic malignancy patients, those with leukemia had the shortest survival (hazard ratio 1.23; 95% CI 1.13, 1.34; P < 0.001), and 40.3% used hospice for less than seven days (OR 1.31; 95% CI 1.11, 1.56; P = 0.002). ConclusionHospice patients with hematologic malignancies are more seriously ill at the time of admission, with worse functional status and shorter lengths of stay than other cancer patients. Differences in outcomes suggest the need for targeted interventions to optimize hospice services for the hematologic malignancies population, especially those with leukemia.

Patients surviving six months in hospice care: who are they?

On January 1, 2011, the Centers for Medicare and Medicaid Services (CMS) began requiring U.S. hospices to conduct a "face-to-face" (F2F) assessment of eligibility for continued hospice care with patients entering their third certification period (180 days after initial enrollment). Understanding which patient populations require F2F assessment is important for evaluating the impact of the CMS regulation and gauging the appropriateness of the 6-month prognosis criteria for different patient groups. Retrospective program records were obtained for patients enrolled in a large hospice 6 months prior to implementation of the CMS regulation (N=375). Patients who remained in hospice and received a F2F (n=140) were compared to patients who were no longer in hospice (n=235) on demographics, terminal condition (categorized as debility/dementia, cancer, or other), presence of serious comorbidity, length of stay, setting of care prior to admission, and hospice outcome using bivariate statistics. Predictors of F2F recertification were examined using a multivariable logistic regression model controlling for demographics, setting of care prior to admission, comorbidity, and primary terminal diagnosis. At the bivariate level, patients who received an F2F were older (p<0.001), and more likely to have lived in a facility care setting prior to hospice admission (p<0.001) than their non-F2F counterparts. Findings from the logistic regression analysis indicate that initial setting of care (odds ratio [OR] for inpatient versus home=0.20; p=0.01), presence of serious comorbidity (OR=2.84; p<0.001), and primary diagnosis (OR for debility/dementia versus cancer=3.35; p<0.001) were significant predictors of F2F recertification. Unlike hospice patients with cancer, patients with a primary diagnosis of dementia or debility are more likely to remain in hospice care beyond 6 months and require F2F recertification. Still, these patients need the services provided by hospice care and may be limited by the 6-month recertification criteria.

Telling adolescents a parent is dying.

When a parent is terminally ill, one of the major challenges facing families is informing children of the parent's condition and prognosis. This study describes four ways in which parents disclose information about a parent's life-threatening illness to their adolescent children. We audio-recorded and transcribed 61 individual interviews with hospice patients who were recruited from a large hospice in northeastern Ohio, their spouses/partners, and their adolescent children. The interviews were coded and analyzed using a constant comparison approach. Families inform adolescents about the progression of a parent's terminal illness in characteristic ways that remain fairly consistent throughout the illness, and are aimed at easing the adolescents' burden and distress. The families engaged in the process of disclosure in one of four ways: measured telling, skirted telling, matter-of-fact telling, and inconsistent telling. These results will inform the development of interventions that assist families with disclosure and are tailored to each family's communication style.

Assessment of Levels of Hospice Care Coverage Offered to Commercial Managed Care Plan Members in California

The implementation of the Affordable Care Act that provides for the expansion of affordable insurance to uninsured individuals and small businesses, coupled with the provision of mandated hospice coverage, is expected to increase the enrollment of the terminally ill younger population in hospice care. We surveyed health insurance companies that offer managed care plans in the 2014 California health insurance exchange and large hospice agencies that provided hospice care to privately insured patients in 2011. Compared with Medicare and Medicaid hospice benefits, hospice benefits for privately insured patients, particularly those enrolled in managed care plans, varied widely. Mandating hospice care alone may not be sufficient to ensure that individuals enrolled in different managed care plans receive the same level of coverage.

Sadness, Anxiety, and Experiences with Emotional Support among Veteran and Nonveteran Patients and their Families at the End of Life

Although many veterans are progressing into older adulthood and a substantive subset of people who die each year in the United States served in the military, there is limited evidence on the role of military service at the end of life. The objective of the study was to examine differences in caregivers' perceptions of sadness and anxiety at the end of life between veteran and nonveteran patients and levels of contentment with the emotional support provided to the patient and family by hospice staff. This cross-sectional study used clinical information from the Family Evaluation of Hospice Care (FEHC) survey administered to caregivers of a patient who received hospice services. The sample in this study included 560 individuals who completed the FEHC survey (from December 2007 to April 2013) after receiving services at a large hospice in an urban southwestern U.S. city. Caregivers responded to questions on the FEHC survey about demographic information, perceptions of the patient's level of sadness/anxiety, and the emotional support the patient and family received from hospice staff. In addition, information regarding veteran status was obtained from patients' medical records. Caregivers of veterans were significantly more likely to report that the patient experienced sadness/anxiety at the end of life, as well as a desire for more emotional support for the family from hospice staff after the death. Results provide preliminary evidence for veteran status being a risk factor for emotional distress at the end of life, highlighting the possible need for augmented support services for veterans and their families in hospice and palliative care.

VIEWS OF HOSPICE STAFF, PATIENTS AND THEIR SIGNIFICANT OTHERS ON VIDEO-RECORDING CONSULTATIONS FOR USE IN RESEARCH AND TEACHING

Research using video-recordings of actual consultations is increasingly providing better understandings of healthcare communication, and grounding new and effective interventions. Video-recordings provide details inaccessible through interviews and ethnographic observations. Initial...

The Spiritual Struggle of Anger toward God: A Study with Family Members of Hospice Patients

Anger toward God is a common form of spiritual struggle, one that people often experience when they see God as responsible for severe harm or suffering. The aim of this study was to assess the prevalence, correlates, and preferred coping strategies associated with anger toward God among family members of hospice patients. Teams from a large hospice in the midwestern United States distributed surveys, one per household, to family members of home-care patients. The survey assessed feelings toward God (anger/disappointment and positive feelings), depressive symptoms, religiosity, and perceived meaning. Participants also rated their interest in various strategies for coping with conflicts with God. Surveys (n=134) indicated that 43% of participants reported anger/disappointment toward God, albeit usually at low levels of intensity. Anger toward God was associated with more depressive symptoms, lower religiosity, more difficulty finding meaning, and belief that the patient was experiencing greater pain. Prayer was the most highly endorsed strategy for managing conflicts with God. Other commonly endorsed strategies included reading sacred texts; handling the feelings on one's own; and conversations with friends, family, clergy, or hospice staff. Self-help resources and therapy were less popular options. Anger toward God is an important spiritual issue among family members of hospice patients, one that is commonly experienced and linked with depressive symptoms. It is valuable for hospice staff to be informed about the issue of anger toward God, especially because many family members reported interest in talking with hospice team members about such conflicts.

Methadone and Cardiac Adverse Outcomes: A Retrospective Study of Patients in a Managed Care Organization (S750)

began within 3 days of the start of the beneficiary’s hospice episode and ended within 3 days of the end of the beneficiary’s hospice episode. For 65% of GIP stays, the beneficiary was not in hospice on the day immediately preceding their first GIP day. Nearly 80% of all hospice providers provided at least one GIP day. Most providers billed less than 13% of their hospice days as GIP days (average 1⁄4 1.5%); a small number exceeded 20%. A higher proportion of older hospices provide GIP than younger hospices, and nearly all large hospices provide GIP compared to half of small hospices. Nearly all New England providers provided GIP vs. three-quarter of Southern providers. Conclusion. There are important variations in GIP utilization by LOS, site of service, and provider characteristics. Most beneficiaries who had a GIP stay began their hospice episode receiving GIP level of care. Implications for Research, Policy, or Practice. Ongoing analyses seek to better understand the underlying causes of variation and factors that influence transition to GIP.

Quality of Palliative Care at US Hospices

The National Quality Forum (NQF) identified hospice services as a national priority area for health care quality improvement and endorsed a set of preferred practices for quality palliative and hospice care. This study reports the first national data regarding hospices' self-reported implementation of the NQF preferred practices and identifies hospice characteristics associated with more comprehensive implementation. We conducted a national cross-sectional survey of a random sample of hospices (n=591; response rate, 84%) from September 2008 to November 2009. We evaluated the reported implementation of NQF preferred practices in the care of both patients and families. The range of reported implementation of individual NQF preferred practices among hospices was 45% to 97%. Twenty-one percent of hospices reported having implemented all patient-centered preferred practices, 26% all family-centered preferred practices, and 10% all patient and family-centered preferred practices. In adjusted analyses, large hospices (100 or more patients per day) were significantly more likely than small hospices (<20 patients per day) to report having implemented all patient-centered preferred practices [odds ratio (OR)=2.46; 95% CI, 1.24, 4.90] and all family-centered preferred practices (OR=1.88; 95% CI, 1.02, 3.45). Similarly, chain-affiliated hospices were significantly more likely than free-standing hospices to report having implemented all patient-centered preferred practices (OR=2.45; 95% CI, 1.23, 4.87) and all family-centered preferred practices (OR=1.85; 95% CI, 1.01, 3.41). Hospices' reported implementation of individual preferred practices for palliative and hospice care quality was high; however, reported comprehensive implementation of preferred practices was rare and may be difficult to achieve for small, free-standing hospices.

Gender differences in prevalence of depression among patients receiving palliative care: The role of dependency

Background: in community studies the prevalence of depression is higher in women than men; however, in palliative care settings this relationship is usually less strong, absent or reversed. Aim: to identify reasons for excess depression among men receiving palliative care. Design: cross-sectional study. Setting/participants: we interviewed 300 patients recruited from a large hospice in South East London. Depression was measured using the Primary Care Evaluation of Mental Disorder. Results: the higher prevalence of depression among men was not explained by a higher prevalence of particular types of cancer nor confounding by other covariates. Possible effect modifiers were examined. Depending on others for help with basic tasks (eating, dressing, washing or using the toilet) was a risk factor for depression in men only, with 37.8% of dependent men being depressed compared to 2.4% of similarly affected women (OR = 24.3, 3.1–193.2, p = 0.003). We observed a dose-response effect between the level of dependency and depression in men (p for trend = 0.01). Conclusion: depending on others for help with basic tasks appears to contribute to the burden of depression among men with terminal illness. This gender-specific association may explain why the usual gender differences in depression prevalence are not observed in palliative care.

Prevalence, course and associations of desire for hastened death in a UK palliative population: a cross-sectional study

ObjectivesTo determine the prevalence, severity and remission of desire for hastened death (DHD) in a UK representative sample of patients with advanced disease receiving palliative care and to examine the...

Bereavement support in a hospice setting

Little attention has been paid to documenting the quality and effectiveness of hospice bereavement support programmes. This article reports findings from an evaluation of a bereavement information evening (BIE) that forms a part of the adult bereavement support service provided by a large hospice in Dublin. The findings indicate the usefulness of the BIE in providing mid-level support for people who may need more than an information leaflet but may not require more intensive one-to-one support, while also acting as a ‘gateway’ to more intensive bereavement services for those who find it difficult to ask for help. However, measures may need to be put in place to ensure those who are unable or do not wish to attend these kinds of events also receive information about the bereavement process. The data may also be useful to hospice bereavement support services in deciding how best to meet clients' varying levels of need.

A retrospective records audit of bereaved carers’ groups

Research on the effectiveness of groupwork for bereaved people in reducing symptoms of grief, is mixed, but many bereavement services in the UK offer support groups as part of their service. Information about the running and content of groups is mainly based on practitioners’ accounts of their experiences. An evaluation of groups organised in a large hospice and associated carers' groups for 70 bereaved carers was undertaken by an independent retrospective review. This covered 65 records of group meetings and 22 evaluation forms completed by group members at reunions. The outcomes of this study contribute further qualitative information about the themes discussed by group members and arrangements for running such groups. Groupwork focused on the death as a shared difficult experience in their lives. 34 discussion themes in the groups were identified from the records, the most frequently discussed themes were family life, stories of the dying process and loss and loneliness. Facilitators’ assessments of the dominant mood in groups were analysed. Sadness was predominant. The group function in most groups was supportive. Members’ evaluations were mostly favourable. They valued meeting others and experiencing shared feelings.