An Interventional Study for the Early Identification of Patients With Palliative Care Needs and the Promotion of Advance Care Planning and Advance Directives

ContextPrograms identifying patients needing palliative care and promoting advance care planning (ACP) are rare in Asia.ObjectivesThis interventional cohort study aimed to identify hospitalized patients with palliative care needs using a validated palliative care screening tool (PCST), examine the ability of the PCST to predict mortality, and explore effects of a pragmatic ACP program targeted by PCST on the utilization of life-sustaining treatment during the last three months of life.MethodsIn this prospective study, we used PCST to evaluate patients' palliative care needs between 2015 and 2016 and followed patients for three months. ACP with advance directives (ADs) was systematically offered to all patients with PCST score ≥4.ResultsOf 47,153 hospitalized patients, 10.4% had PCST score ≥4. During follow-up, 2121 individuals died within three months of palliative care screening: 1225 (25.0%) with PCST score ≥4 and 896 (2.1%) with PCST score <4. After controlling for covariates, PCST score ≥4 was significantly associated with a higher mortality within three months of screening (adjusted odds ratio [AOR] 6.86; 95% CI 6.16–7.63). Moreover, ACP consultation (AOR 0.78; 95% CI 0.66–0.92) and AD completion (AOR 0.49; 95% CI 0.36–0.65) were associated with a lower likelihood of receiving life-sustaining treatments during the last three months of life.ConclusionWe demonstrated the feasibility of implementing a comprehensive palliative care program to identify patients with palliative care needs and promote ACP and AD in Eastern Asia. ACP consultation and AD completion were associated with reduced utilization of life-sustaining treatments during the last three months of life.     

Aggressive End-of-Life Care Significantly Influenced Propensity for Hospice Enrollment Within the Last Three Days of Life for Taiwanese Cancer Decedents

ContextLate hospice enrollment exacts a substantial toll from patients, families, hospices, and society. The relationship between the propensity for late hospice enrollment and aggressive health services received at the end of life (EOL) has been underinvestigated.ObjectivesTo identify determinants of hospice enrollment within the last three days of life.MethodsRetrospective population-based cohort study using administrative data for 31,529 Taiwanese cancer decedents who used hospice care in their last year of life.ResultsRates of hospice enrollment within the last three days of life (16.80%–18.73%) remained constant over 2001–2006. After adjustment for patient demographics and disease characteristics, physician specialty, availability of health care resources at the hospital and regional levels, and historical trends, late hospice enrollment was more likely if Taiwanese cancer patients received chemotherapy, had multiple emergency room visits or hospital admissions, and used the intensive care unit in their last month of life (adjusted odds ratio [95% confidence interval] (AOR [95% CI]): 1.61 [1.44–1.80], 1.40 [1.29–1.52], 1.78 [1.51–2.09], and 1.45 [1.19–1.76], respectively). Late hospice enrollment was less likely for patients with hospital stays >14 days or who received cardiopulmonary resuscitation in their last month of life (AOR [95% CI]: 0.51 [0.45–0.58] and 0.41 [0.25–0.65], respectively).ConclusionAggressive EOL care played a more significant role than patient, physician, or hospital characteristics in determining the propensity of Taiwanese cancer patients to be enrolled in hospice care within their last three days of life. Clinical and health policies should aim to avoid aggressive care when it will not benefit patients but may preclude timely hospice enrollment.     

Association of Advance Directives Completion With the Utilization of Life-Sustaining Treatments During the End-of-Life Care in Older Patients

Context

Evidence is mixed regarding the impact of advance directives (ADs) on the utilization of end-of-life treatments.

Clinical Trial Participation as Part of End-of-Life Cancer Care: Associations With Medical Care and Quality of Life Near Death

ContextClinical trials are a common therapeutic option for patients with advanced incurable cancer.ObjectivesTo examine the associations between trial participation and end-of-life (EOL) outcomes, including aggressive care and quality of life (QOL).MethodsCoping with Cancer, a multicenter prospective cohort study of patients with metastatic cancer, progressed after at least first-line chemotherapy. Baseline chart review documented clinical trial participation. Baseline interviews assessed psychosocial characteristics and EOL preferences. Caregiver interview and chart review assessed medical care and QOL near death. The primary outcome was aggressive EOL care (ventilation, resuscitation, or intensive care unit admission in last week of life). Propensity score weighting balanced patient characteristics that differed by trial participation, including care preferences and EOL discussion. Propensity score–weighted regression models estimated the effect of trial participation on outcomes.ResultsOf 352 patients followed to death, 37 were enrolled in a clinical trial at baseline. In propensity score–weighted analyses, trial participation was significantly associated with aggressive EOL care (21.6% vs. 12.0%, adjusted odds ratio [AOR] 2.04, 95% confidence interval [CI] 1.00–4.15), late hospice enrollment (51.4% vs. 42.2%, AOR 1.96, 95% CI 1.10–3.50), hospital death (48.6% vs. 25.7%, AOR 2.74, 95% CI 1.37–5.47), intensive care unit death (16.2% vs. 6.3%, AOR 3.53, 95% CI 1.29–9.65), and inferior QOL near death (least squares mean 5.93 vs. 7.69, P < 0.001). Controlling for EOL care, trial enrollment was no longer associated with QOL near death (P = 0.342).ConclusionClinical trial participation is associated with aggressive EOL care. Aggressive EOL care appears to explain the association between trial participation and QOL near death.     

The Association of Surrogate Decision Makers' Religious and Spiritual Beliefs With End-of-Life Decisions

ContextAlthough religion and spirituality are important to surrogate decision makers, little is known about the role of religion in decision making regarding life-sustaining treatments.ObjectivesTo determine the relationships between dimensions of religion and spirituality and medical treatment decisions made by surrogates.MethodsThis prospective observational study enrolled patient/surrogate dyads from three hospitals in one metropolitan area. Eligible patients were 65 years or older and admitted to the medicine or medical intensive care services. Baseline surveys between hospital days 2 and 10 assessed seven dimensions of religion and spirituality. Chart reviews of the electronic medical record and regional health information exchange six months after enrollment identified the use of life-sustaining treatments and hospice for patients who died.ResultsThere were 291 patient/surrogate dyads. When adjusting for other religious dimensions, demographic, and illness factors, only surrogates' belief in miracles was significantly associated with a lower surrogate preference for do-not-resuscitate status (adjusted odds ratio [aOR] 0.39; 95% CI 0.19, 0.78). Among patients who died, higher surrogate intrinsic religiosity was associated with lower patient receipt of life-sustaining treatments within the last 30 days (aOR 0.66; 95% CI 0.45, 0.97). Belief in miracles (aOR 0.30; 95% CI 0.10, 0.96) and higher intrinsic religiosity (aOR 0.70; 95% CI 0.53, 0.93) were associated with lower hospice utilization.ConclusionFew religious variables are associated with end-of-life preferences or treatment. Belief in miracles and intrinsic religiosity may affect treatment and should be identified and explored with surrogates by trained chaplains or other clinicians with appropriate training.     

Bereaved family members' evaluation of hospice care: what factors influence overall satisfaction with services?

As patients near the end of life, bereaved family members provide an important source of evaluation of the care they receive. A study was conducted to identify which processes of care were associated with greater satisfaction with hospice services from the perception of bereaved family members. A total of 116,974 surveys from 819 hospices in the United States were obtained via the 2005 Family Evaluation of Hospice Care, an online repository of surveys of bereaved family members' perceptions of the quality of hospice care maintained by the National Hospice and Palliative Care Organization. Overall satisfaction was dichotomized as "excellent" vs. "other" (very good, good, fair, and poor). Using multivariate logistic regression, the association between overall satisfaction and the individual item problem scores that compose the Family Evaluation of Hospice Care were examined. Bereaved family members were more likely to rate overall satisfaction with hospice services as "excellent" if they were regularly informed about their loved one's condition (adjusted odds ratio [AOR]=3.76, 95% confidence interval [CI]=3.61-3.91), they felt the hospice team provided the right amount of emotional support to them (AOR=2.21, 95% CI=2.07-2.38), they felt that the hospice team provided them with accurate information about the patient's medical treatment (AOR=2.16, 95% CI=2.06-2.27), and they could identify one nurse as being in charge of their loved one's care (AOR=2.02, CI=1.92-2.13). These four key processes of care appear to significantly influence an "excellent" rating of overall satisfaction with hospice care.     

Impact of availability of an inpatient hospice unit on the parent hospital's quality of palliative care for Taiwanese cancer decedents, 2001-2006

Context

Hospice care has increasingly been shown to affect quality of palliative care at both the individual and institutional levels. However, an institutional effect has only been addressed in single comprehensive cancer centers/selected community hospitals.

Objectives

To investigate the impact of an inpatient hospice unit on the parent hospital’s quality of palliative care.

Methods

This was a retrospective cohort study using administrative data from the entire population of 204,850 Taiwanese pediatric and adult cancer patients who died in 2001–2006. Outcome variables were adjusted by multivariate logistic regression for five groups of confounding variables: 1) patient demographics and disease characteristics, 2) primary hospital characteristics, 3) primary physician specialty, 4) health care resources at the hospital and regional levels, and 5) historical trend.

Results

Taiwanese cancer patients who received primary care in a hospital with an inpatient hospice unit (whether or not they received hospice care) were significantly less likely to be intubated (adjusted odds ratio [AOR]: 0.71; 95% confidence interval [CI]: 0.58, 0.86) and use mechanical ventilation support (AOR: 0.70; 95% CI: 0.56, 0.87) in their last month of life. They also were more likely to use hospice care before death (AOR: 3.51; 95% CI: 1.57, 7.86). Furthermore, if they used hospice care, they tended to be referred earlier than cancer patients being cared for in a hospital without an inpatient hospice unit.

Conclusion

Integrating both acute care and palliative care approaches to caring for terminally ill cancer patients in the same hospital may influence the quality of palliative care throughout the hospital as evidenced by our findings that these patients have lower likelihood of being intubated with mechanical ventilation support in the last month of life, greater propensity to receive hospice care in the last year of life, and a trend toward earlier referral to hospice care. The generalizability of these results may be limited to patients who died of a noncancer cause and by the two groups not being exactly matched for patients’ characteristics.     

Health Care Utilization and End-of-Life Care Outcomes for Patients With Decompensated Cirrhosis Based on Transplant Candidacy

ContextPatients with decompensated cirrhosis have high rates of health care utilization at end of life (EOL). However, the impact of transplant candidacy on intensity of EOL care is currently unknown.ObjectivesTo assess the relationship between transplant candidacy and intensity of EOL care in the last year of life in an ambulatory cohort of patients with decompensated cirrhosis.MethodsWe performed a retrospective analysis of 230 patients with decompensated cirrhosis who were evaluated for liver transplantation in a large health care system between 1/1/2010 and 12/31/2017 and died by 6/20/2018. We compared health care utilization in the last year of life and EOL care outcomes between transplant-listed (n = 133) and nonlisted (n = 97) patients. We examined predictors of palliative and hospice care utilization using multivariate logistic regression.ResultsDuring the last year of life, patients had a median of three hospitalizations (IQR 2–5) and spent a median of 31 days (IQR 16–49) in the hospital. In all, 80% of patients died in the hospital, with 70% dying in the intensive care unit. The majority (70.0%) received a life-sustaining procedure (mechanical ventilation, renal replacement therapy, or cardiopulmonary resuscitation) during their terminal hospitalization, which did not differ between transplant-listed and nonlisted patients (74.4% vs. 63.9%, P = 0.09). Transplant-listed patients had lower odds of receiving specialty palliative care (odds ratio 0.43, P = 0.005). Patients with hepatocellular carcinoma had higher odds of receiving hospice care (odds ratio 2.03, P = 0.049).ConclusionPatients with decompensated cirrhosis had intensive health care utilization during their last year of life regardless of transplant candidacy. Further work is needed to optimize their EOL care, particularly for patients who are ineligible for transplantation.     

Hospice Exposure Is Associated With Lower Health Care Expenditures in Taiwanese Cancer Decedents' Last Year of Life: A Population-Based Retrospective Cohort Study

Context

Evidence for the association of hospice exposure with lower health care expenditures at end of life (EOL) remains inconclusive and neglects EOL care being concentrated in patients' last few months.

Associations Between Hospice Care and Scary Family Caregiver Experiences

ContextHospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.ObjectivesTo examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.MethodsSecondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.ResultsHospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.ConclusionHospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.     

Does Receipt of Recommended Elements of Palliative Care Precede In-Hospital Death or Hospice Referral?

ContextPalliative care aligns treatments with patients' values and improves quality of life, yet whether receipt of recommended elements of palliative care is associated with end-of-life outcomes is understudied.ObjectivesTo assess whether recommended elements of palliative care (pain and symptom management, goals of care, and spiritual care) precede in-hospital death and hospice referral and whether delivery by specialty palliative care affects that relationship.MethodsWe conducted structured chart reviews for decedents with late-stage cancer, dementia, and chronic kidney disease with a hospital admission during the six months preceding death. Measures included receipt of recommended elements of palliative care delivered by any clinician and specialty palliative care consult. We assessed associations between recommended elements of palliative care and in-hospital death and hospice referral using multivariable Poisson regression models.ResultsOf 402 decedents, 67 (16.7%) died in hospital, and 168 (41.8%) had hospice referral. Among elements of palliative care, only goals-of-care discussion was associated with in-hospital death (incidence rate ratio [IRR] 1.37; 95% CI 1.01–1.84) and hospice referral (IRR 1.85; 95% CI 1.31–2.61). Specialty palliative care consult was associated with a lower likelihood of in-hospital death (IRR 0.57; 95% CI 0.44–0.73) and a higher likelihood of hospice referral (IRR 1.45; 95% CI 1.12–1.89) compared with no consult.ConclusionGoals-of-care discussions by different types of clinicians commonly precede end-of-life care in hospital or hospice. However, engagement with specialty palliative care reduced in-hospital death and increased hospice referral. Understanding the causal pathways of goals-of-care discussions may help build primary palliative care interventions to support patients near the end of life.     

Determinants of hospice home care use among terminally ill cancer patients

BACKGROUND: Despite the widespread availability of hospice services for more than two decades in the United States, currently many terminally ill cancer patients who may benefit from hospice care do not receive it. PURPOSE: To identify determinants of the use of hospice home care services for terminally ill cancer patients during their final days of life. METHODS: Secondary analysis of data from 127 terminally ill cancer patients who participated in a prospective and exploratory study aimed at identifying determinants of congruence between the preferred and actual place of death. Multivariate logistic regression analysis was conducted to identify determinants of hospice home care use. RESULTS: Sixty-four (50.4%) out of the 127 participants had used hospice home care services before death. Important determinants of hospice home care use included: (a) longer length of survival (odds ratio [OR] 1.02; 95% confidence interval [CI]: 1.01-1.03); (b) perceived greater family ability to achieve preferred place of death (OR: 1.85; 95% CI: 1.30-2.62); (c) home as the realistic preferred place of death (OR: 5.58; 95% CI: 1.95-16.03); (d) being female (OR: 5.37; 95% CI: 1.81-15.95); (e) lower levels of functional dependency (OR: 0.94; 95% CI: 0.89-0.99); and (f) use of emergency care during the final days of life (OR: 4.03; 95% CI: 1.26-12.94). CONCLUSIONS: The results of this study identified several groups of terminally ill cancer patients who were at a disadvantage to use hospice home care, including those without sufficient family resources but who required intensive nursing care. Providing nursing care that enables family care-taking at home may facilitate hospice home care use for patients.     

Assessing the value of hospice care: is documentation of cost savings necessary

Hospice care is one end-of-life option that since its inception has been the subject of numerous cost comparisons. Early hospice care emerged as a social movement in the United Kingdom. This movement began outside the medical services establishment and sought to improve care for the terminally ill through palliative and supportive services, provided in the patient's own home (1). Hospice care was viewed as a dramatic shift away from the dominant medical paradigm that favored aggressive and technologically intensive treatment of advanced disease in an institutional setting. While many public and health policy analysts have attributed the high cost of dying to the use of aggressive and intensive treatments, the cost-savings of hospice is still an issue for debate. The results of the National Hospice study, which documented medical cost savings during the last six months of life for hospice patients as compared to conventional care patients, was seen as the impetus for Medicare reimbursement for hospice services (2,3). Against this backdrop, the Medicare Hospice Benefit was enacted in 1982 with the goal of providing humane, compassionate and cost-effective care for Medicare beneficiaries with incurable advanced disease. Ever increasing concerns about rising health care costs and the economics of dying have fueled numerous studies trying to quantify the cost savings at the end of life that may result from hospice versus conventional care.     

Hospice enrollment and pain assessment and management in nursing homes

This study compared pain assessment and management in the last 48 hours of life for hospice and nonhospice nursing home residents. Included were 209 hospice and 172 nonhospice residents in 28 nursing homes in six geographic areas. Hospice patients were considered short-stay (seven days or less) (n=51), or longer-stay (over seven days) (n=158). Of residents not in a hospital or a coma (n=265), 33% of nonhospice residents, 6% of short-stay and 7% of longer-stay hospice residents had no documented pain assessment (P<0.05). For those with pain documented (n=93), longer-stay hospice residents, compared to nonhospice residents, had a significantly greater likelihood of having received an opioid (adjusted odds ratio [AOR] 5.4; 95% CI 1.3, 21.7), and an opioid at least twice a day (AOR 2.7; 95% CI 0.9, 7.7; P=0.07). Study results suggest that hospice enrollment improves pain assessment and management for nursing home residents; they also document the need for continued improvement of pain management in nursing homes.     

Factors Associated With the Provision of Hospice Care for Children

ContextChildren at the end of life often lack access to hospice care at home or in a dedicated facility. The factors that may influence whether or not hospices provide pediatric care are relatively unknown.ObjectivesThe purpose of this study was to understand the institutional and resource factors associated with provision of pediatric hospice care.MethodsThis study used a retrospective, longitudinal design. The main data source was the 2002 to 2008 California State Hospice Utilization Data Files. The sample size was 311 hospices or 1368 hospice observations over seven years. Drawing on institutional and resource dependence theory, this study used generalized estimating equations to examine the institutional and resource factors associated with provision of pediatric hospice care. Interaction terms were included to assess the moderating effect of resource factors on the relationship between institutional factors and provision of care.ResultsMembership in professional groups increased the probability (19%) of offering hospice services for children. Small- (?22%) and medium-sized (?11%) hospices were less likely to provide care for children. The probability of providing pediatric hospice care diminished (?23%) when competition increased in the prior year. Additionally, small size attenuated the accreditation-provision relationship and medium size magnified the membership-provision relationship.ConclusionProfessional membership may promote conformity to industry standards of pediatric care and remove the unknowns of providing hospice care for children. Hospices, especially medium-sized hospices, interested in developing or expanding care for children may benefit by identifying a pediatric champion to join a professional group.     

Factors associated with aggressive end of life cancer care

Background

Many patients with cancer experience aggressive care towards the end of life (EOL) despite evidence of an association with poor outcomes such as prolonged pain and overall dissatisfaction with care.

Purpose

To investigate socio-demographic, clinical and community health care service factors associated with aggressive EOL cancer care.

Methods

An analysis of pooled data from two mortality follow-back surveys was performed. Aggressive EOL care was defined as greater than or equal to one of the following indicators occurring during the last 3 months of life: greater than or equal to two emergency department visits, ≥30 days in hospital and death in hospital.

Results

Of the 681 included patients, 50.1 % were men and mean age at death was 75 years. The majority of patients (59.3 %, 95 % confidence interval (CI) 55.6–63.0 %) experienced at least one indicator of aggressive EOL care: 29.7 % experienced greater than or equal to two ED visits, 17.1 % spent ≥30 days in hospital and 37.9 % died in hospital. Patients with prostate or haematological cancer were more likely to experience aggressive EOL care (adjusted odds ratio (AOR) 4.36, 95 % CI 1.39–13.70, and 4.16, 95 % CI 1.38–12.47, respectively, reference group lung cancer). Patients who received greater than five general practitioner (GP) home visits (AOR 0.37, 95 % CI 0.17–0.82, reference group no GP visits) or had contact with district nursing (AOR 0.48, 95 % CI 0.28–0.83, reference group no contact) or contact with community palliative care services (AOR 0.27, 95 % CI 0.15–0.49, reference group no contact) were less likely to experience aggressive EOL care. No association was found between aggressive EOL care and patients’ age, gender, marital, financial or health status.

Conclusions

Community health care services, in particular contact with community palliative care, are associated with a significant reduction in the odds of cancer patients receiving aggressive EOL care. Expansion of such services may help address the current capacity crises faced by many acute health care systems.

     

Beyond Idiopathic Pulmonary Fibrosis Diagnosis: Multidisciplinary Care With an Early Integrated Palliative Approach Is Associated With a Decrease in Acute Care Utilization and Hospital Deaths

Context

Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable interstitial lung disease with heavy symptom burden and poor quality of life. The last year of life is characterized by increased acute care utilization and hospital deaths. Clinical guidelines recommend early integration of palliative care but are rarely implemented. In 2012, we reorganized our clinic into a multidisciplinary team comprising two pulmonologists (expertise in interstitial lung disease and palliative respiratory care, respectively), nurse, respiratory therapist, physiotherapist, and a dietitian. We adopted an early integrated palliative approach with a focus on early symptom management and advance care planning starting at the first clinic visit. We designed a Multidisciplinary collaborative (MDC) care model with emphasis on community-based care to manage patients in their homes and support caregivers.

Factors influencing place of death in Germany

ContextKnowledge about factors influencing the place of death may be very useful for the planning of public health strategies to improve the situation of terminally ill patients.ObjectivesThe aim of our study was to determine where people died in the German federal state of Rhineland-Palatinate in 2008. We further wanted to detect which factors had an influence on the place of death.MethodsOur cross-sectional survey was based on a random sample of 5000 inhabitants of Rhineland-Palatinate who had died between May 25, 2008 and August 24, 2008. Relatives of these randomly drawn deceased persons were interviewed by means of a written survey.ResultsAfter removing duplicates, 4967 questionnaires were sent out. In total, 3832 questionnaires were delivered and 1378 completed, leading to a response rate of 36.0%. Of this group, 38.2% of the deceased died at home, 39.3% in a hospital, 13.4% in a nursing home, 7.5% in a palliative care facility, and 1.6% elsewhere. Suffering from cancer (adjusted odds ratio [AOR]: 1.30; 95% confidence interval [CI]: 1.01–1.68), social support (AOR being married: 1.33; 95% CI: 1.04–1.70; AOR having a nonworking relative: 1.71; 95% CI: 1.28–2.29), a high care level (AOR Care Level II: 2.79; 95% CI: 2.06–3.79, AOR Care Level III: 4.96; 95% CI: 3.40–7.24), and living in a rural municipality (AOR: 1.36; 95% CI: 1.01–1.84) were major factors favoring home death compared with institutional death.ConclusionCompared with other European countries, home death is still a frequent event in the federal state of Rhineland-Palatinate. Regional health policy should consider the actual distribution of place of death and corresponding predicting factors when establishing specialized palliative care home services as designed by recent German health legislation.