Code Status Documentation in the Outpatient Electronic Medical Records of Patients with Metastatic Cancer

BACKGROUND  

Advanced care planning (ACP) is considered an essential component of medical care in the United States, especially in patients with incurable diseases. However, little is known about clinical practices in outpatient oncology settings related to discussing end-of-life care and documenting code status preferences in ambulatory medical records.     

Barriers to communication about end-of-life care in AIDS patients

Objective

Patients and physicians do not adequately discuss patients’ preferences for medical care at the end of life. Our objective was to perform a qualitative study using focus groups to identify barriers and facilitators to communication about end-of-life medical care for patients with AIDS and their physicians.

Participants

Patients with AIDS and physicians with moderate or extensive HIV experience were recruited from clinics and community-based settings using network sampling. A total of 47 patients participated in six focus groups and 19 physicians participated in three groups.

Measurements and main results

Patients or physicians identified 29 barriers and facilitators to communication about end-of-life care. Many patients and physicians expressed discomfort talking about death and dying, and some felt that discussing end-of-life care could cause harm or even hasten death. Several patients expressed the view that a living will obviated the need for discussion with their physician. Previous experience of discrimination from the health care system was a strong barrier to end-of-life communication for some patients with AIDS. Some patients hesitate to bring up end-of-life issues because they want to protect their physicians from uncomfortable discussions. Many patients identified the quality of communication as an important facilitator to these difficult discussions.

Conclusions

Improving the quality of patient-physician communication about end-of-life care will require that physicians identify and overcome the barriers to this communication. To improve the quality of medical care at the end of life, we must address the quality of communication about end-of-life care.     

Family Understanding of Seriously-ill Patient Preferences for Family Involvement in Healthcare Decision Making

Background  

Surrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.     

Why Don’t Patients Enroll in Hospice? Can We Do Anything About It?

BACKGROUND  

United States hospice organizations aim to provide quality, patient-centered end-of-life care to patients in the last 6 months of life, yet some of these organizations observe that some hospice-eligible patients who are referred to hospice do not initially enroll.     

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis

Objectives

To determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research.

Design

Systematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken.

Setting

Hospital and community care settings.

Participants

Older adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164).

Measurements

The QualSys criteria were used to assess study quality.

Results

Of 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading‐off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences.

Conclusion

Family is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.     

End-of-Life Care Preferences and Needs: Perceptions of Patients with Chronic Kidney Disease

Background and objectives: Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients'' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients'' preferences and to help prioritize and guide future innovation in end-of-life care policy.Design, setting, participants, & measurements: A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008.Results: Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months.Conclusions: Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.Despite improvements in dialysis technology, the annual mortality rate of dialysis patients is 20% to 25% (1). The burden of symptoms for dialysis patients and those with advanced chronic kidney disease (CKD) who choose conservative care (i.e., no dialysis) is high (2), with the number and severity of symptoms (such as pain, nausea, anorexia, shortness of breath, insomnia, anxiety, and depression) rivaling those of many cancer patients (3–5). An increasing number of patients are dying after withdrawal of dialysis (10% to 15% in 1990; 20% in 2004) (1), representing the second leading cause of death after cardiovascular disease. Unfortunately, the majority of patients are not involved in these decisions because they lack decision-making capacity at the time the decision to withdraw dialysis is made (6). The vast majority of patients with CKD die in acute care facilities, without accessing palliative care services (7). Despite this, surprisingly little research has been done to study how these patients die or their preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients. This will help identify gaps between current end-of-life care practice and patients'' preferences and will help prioritize and guide future innovation in end-of-life care policy.     

“Knowing is Better”: Preferences of Diverse Older Adults for Discussing Prognosis

BACKGROUND  

Prognosis is critical in individualizing care for older adults with late life disability. Evidence suggests that preferences for prognostic information may be culturally determined. Yet little is known about the preferences of diverse elders for discussing prognosis.     

Quality of end-of-life care with non-malignant liver disease: Analysis of the VOICES National Survey of Bereaved People

Background and Aims

Patients with liver disease struggle to access palliative care. We aimed to compare carers' perceptions of end-of-life care for decedents with non-malignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease.

Methods

A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011–2015.

Results

More decedents with non-malignant liver disease died in hospital than other diseases (76.9% vs. 40.9% vs. 50.2%, p < .001), despite 89% wishing to die at home. Fewer decedents received home/hospice specialist palliative care compared with those with malignant liver disease (10.0% vs. 54.6%, p < .001). Carers of decedents with non-malignant liver disease were less likely to rate overall end-of-life care quality as outstanding/excellent (29.3% vs. 43.9% vs. 42.3%, p < .001). For this group, poorer care was associated with younger (65–74 vs. 18–64 years, OR [odds ratio] 1.39, p = .01), more socially deprived decedents (OR .78, p = .02), and better care with greater social support (OR 1.82, p < .001) and community specialist palliative care involvement (OR 1.80, p < .001). There was no association between outstanding/excellent rating and underlying cause of non-malignant liver disease (alcohol-related vs. non-alcohol-related, p = .92) or place of death (hospital vs. non-hospital, p = .476).

Conclusions

End-of-life care could be improved by integrating hepatology and community services, particularly specialist palliative care, and advance care planning to facilitate care and death (where desired) at home. However, death in hospital may be appropriate for those with non-malignant liver disease.     

End-of-Life Care from the Perspective of Primary Care Providers

PURPOSE

To explore the factors influencing primary care providers?? ability to care for their dying patients in Michigan.

METHODS

We conducted 16 focus groups to explore the provision of end-of-life care by 7 diverse primary care practices in southeast Michigan. Twenty-eight primary care providers and 22 clinical support staff participated in the study. Interviews were analyzed using thematic analysis.

RESULTS

Primary care providers (PCPs) wanted to care for their dying patients and felt largely competent to provide end-of-life care. They and their staff reported the presence of five structural factors that influenced their ability to do so: (1) continuity of care to help patients make treatment decisions and plan for the end of life; (2) scheduling flexibility and time with patients to address emergent needs, provide emotional support, and conduct meaningful end-of-life discussions; (3) information-sharing with outside providers and within the primary care practice; (4) coordination of care to address patients?? needs quickly; and (5) authority to act on behalf of their patients.

CONCLUSIONS

In order to provide end-of-life care, PCPs need structural supports within primary care for continuity of care, flexible scheduling, information-sharing, coordination of primary care, and protection of their authority.     

Development of an end-of-life care management scale for assessing the care of older adults who wish to spend the end-of-life period at home

Aim

To develop an end-of-life care management scale to assess care for older adults who wish to remain at home, and examine its reliability and validity.

Methods

An item pool was created based on a literature review, and the 46-item, tentative version of end-of-life care management scale was developed. Next, a cross-sectional survey was conducted with 2583 care managers using a self-reported questionnaire. An exploratory factor analysis was used to evaluate the scale's internal consistency using Cronbach's alpha. Intra-rater reliability was evaluated using the correlation with a repeat test. Construct validity and criterion-related validity were determined using a confirmatory factor analysis, and correlations between this scale and previous scales, respectively.

Results

Valid responses were obtained from 477 care managers. Exploratory factor analyses identified 23 items from four factors: “further the teamwork to realize the individual's wishes,” “rapid care planning that anticipates changes in the situation,” “support to family members preparing for end-of-life care at home” and “support to become familiar with the older adult's views of life, death and suffering.” Cronbach's alpha was 0.819 for the entire scale and ≥0.709 for each factor. The intraclass correlation coefficient of the test–retest ranged from 0.756 to 0.863. The correlation coefficients between the previous scales and the entire scale ranged from 0.569 to 0.795 (P < 0.001).

Conclusions

The scale showed acceptable internal consistency and concurrent validity. Care managers' use of this scale might improve quality of care management and fulfil older adults' wishes to remain at home during the end-of-life period. Geriatr Gerontol Int 2023; 23: 131–140 .     

Managers' experiences of providing end-of-life care under the Home Care Package Program

Objective

The study explored the experiences of Australian aged care providers in supporting clients on a home care package to die at home.

Methods

Semistructured interviews were conducted with 13 aged care managers responsible for delivering services under the Home Care Package Program. Interviews were analysed thematically.

Results

Four themes emerged that illuminated managers' experiences: struggling to meet a preference to die at home; lack of opportunities to build workforce capacity in end-of-life care; challenges in negotiating fragmented funding arrangements between health and aged care providers; and mixed success in collaborating across sectors.

Conclusions

Aged care providers want to support older Australians who prefer to stay at home at the end of life. However, most clients are admitted to a residential facility when their care needs exceed a home care budget long before a specialist palliative care team will intervene. Budgets for health and aged care providers must be sufficient and flexible to support timely access to end-of-life care, to reward collaboration across sectors and to invest in building palliative care skills in the nursing and personal care workforce.     

Intervention to Improve Care at Life’s End in Inpatient Settings: The BEACON Trial

Background

Widespread implementation of palliative care treatment plans could reduce suffering in the last days of life by adopting best practices of traditionally home-based hospice care in inpatient settings.

Objective

To evaluate the effectiveness of a multi-modal intervention strategy to improve processes of end-of-life care in inpatient settings.

Design

Implementation trial with an intervention staggered across hospitals using a multiple-baseline, stepped wedge design.

Participants

Six Veterans Affairs Medical Centers (VAMCs).

Intervention

Staff training was targeted to all hospital providers and focused on identifying actively dying patients and implementing best practices from home-based hospice care, supported with an electronic order set and paper-based educational tools.

Main Measures

Several processes of care were identified as quality endpoints for end-of-life care (last 7 days) and abstracted from electronic medical records of veterans who died before or after intervention (n = 6,066). Primary endpoints were proportion with an order for opioid pain medication at time of death, do-not-resuscitate order, location of death, nasogastric tube, intravenous line infusing, and physical restraints. Secondary endpoints were administration of opioids, order/administration of antipsychotics, benzodiazepines, and scopolamine (for death rattle); sublingual administration; advance directives; palliative care consultations; and pastoral care services. Generalized estimating equations were conducted adjusting for longitudinal trends.

Key Results

Significant intervention effects were observed for orders for opioid pain medication (OR: 1.39), antipsychotic medications (OR: 1.98), benzodiazepines (OR: 1.39), death rattle medications (OR: 2.77), sublingual administration (OR: 4.12), nasogastric tubes (OR: 0.71), and advance directives (OR: 1.47). Intervention effects were not significant for location of death, do-not-resuscitate orders, intravenous lines, or restraints.

Conclusions

This broadly targeted intervention strategy led to modest but statistically significant changes in several processes of care, indicating its potential for widespread dissemination to improve end-of-life care for thousands of patients who die each year in inpatient settings.

Electronic supplementary material

The online version of this article (doi:10.1007/s11606-013-2724-6) contains supplementary material, which is available to authorized users.KEY WORDS: palliative care, end-of-life care, palliative medicine, hospice, inpatient     

Religious Hospitals and Primary Care Physicians: Conflicts over Policies for Patient Care

BACKGROUND  

Religiously affiliated hospitals provide nearly 20% of US beds, and many prohibit certain end-of-life and reproductive health treatments. Little is known about physician experiences in religious institutions.     

Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: Insights from a multicentre study

BACKGROUND:

Understanding patients’ needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease.

OBJECTIVES:

To describe ratings of importance and satisfaction with elements of EOL care, informational needs, decision-making preferences, obstacles to a preferred location of death, clinical outcomes, and health care use before and during an index hospital admission for patients who have advanced chronic obstructive pulmonary disease (COPD).

METHODS:

A questionnaire with regard to quality EOL care was administered to patients older than 55 years of age who had advanced medical disease in five Canadian teaching hospitals.

RESULTS:

For 118 hospitalized patients who had advanced COPD, the following items were rated as extremely important for EOL care: not being kept alive on life support when there is little hope for meaningful recovery (54.9% of respondents), symptom relief (46.6%), provision of care and health services after discharge (40.0%), trust and confidence in physicians (39.7%), and not being a burden on caregivers (39.6%). Compared with patients who had metastatic cancer, patients with COPD had lower (P<0.05) satisfaction with care, interest in information about prognosis, cardiopulmonary resuscitation or mechanical ventilation, and referral rates to palliative care, whereas use of acute care services was higher (P<0.05) for patients who had advanced COPD.

CONCLUSION:

Canadian patients who have advanced COPD identify several priorities for improving care. Avoidance of prolonged or unwanted life support requires more effective communication, decision making and goal setting. Patients also deserve better symptom control and postdischarge strategies to minimize perceived burdens on caregivers, emergency room visits and hospital admissions.     

The influence of religious beliefs and practices on health care decision-making among HIV positive adolescents

ABSTRACT

It is unknown if religiousness/spirituality influences end-of-life treatment preferences among adolescents. Investigators assessed whether religiousness/spirituality moderates the relationship between an advance care planning intervention and end-of-life treatment preferences among 85 primarily African-American adolescents living with HIV/AIDS in outpatient-hospital-based HIV-specialty clinics in the United States. Adolescents aged 14–21 years living with HIV/AIDS and their families were randomized to three-weekly-60-minute sessions either: advance care planning (survey, goals of care conversation, advance directive); or control (developmental history, safety tips, nutrition/exercise). At 3-months post-intervention the intervention effect (decreasing the likelihood of choosing to continue treatments in all situations) was significantly moderated by religiousness/spirituality. Highly religious/spiritual adolescents were four times more likely to choose to continue treatments in all situations. Thus, intensive treatments at end-of-life may represent health equity, rather than health disparity. The belief believed that HIV is a punishment from God at baseline (15%, 14/94) was not associated with end-of-life treatment preferences. Twelve percent (11/94) reported they had stopped taking HIV medications for more than 3 days because of the belief in a miracle. Religiousness moderates adolescent’s medical decision-making. Adolescents who believe in miracles should receive chaplaincy referrals to help maintain medication adherence.     

Truth Telling and Treatment Strategies in End-of-Life Care in Physician-Led Accountable Care Organizations: Discrepancies Between Patients’ Preferences and Physicians’ Perceptions

Providing patient-centered care from preventive medicine to end-of-life care in order to improve care quality and reduce medical cost is important for accountable care. Physicians in the accountable care organizations (ACOs) are suitable for participating in supportive end-of-life care especially when facing issues in truth telling and treatment strategy. This study aimed to investigate patients’ attitudes toward truth telling and treatment preferences in end-of-life care and compare patients’ attitudes with their ACOs physicians’ perceptions.This nationwide study applied snowball sampling to survey physicians in physician-led ACOs and their contracted patients by questionnaire from August 2010 to July 2011 in Taiwan. The main outcome measures were beliefs about palliative care, attitudes toward truth telling, and treatment preferences.The data of 314 patients (effective response rate = 88.7%) and 177 physicians (88.5%) were analyzed. Regarding truth telling about disease prognosis, 94.3% of patients preferred to be fully informed, whereas only 80% of their physicians had that perception (P < 0.001). Significant differences were also found in attitudes toward truth telling even when encountering terminal disease status (98.1% vs 85.3%). Regarding treatment preferences in terminal illness, nearly 90% of patients preferred supportive care, but only 15.8% of physicians reported that their patients had this preference (P < 0.001).Significant discrepancies exist between patients’ preferences and physicians’ perceptions toward truth telling and treatment strategies in end-of-life care. It is important to enhance physician–patient communication about end-of-life care preferences in order to achieve the goal of ACOs. Continuing education on communication about end-of-life care during physicians’ professional development would be helpful in the reform strategies of establishing accountable care around the world.     

Healthcare delivery research in older adults with cancer: A review of National Institutes of Health-funded projects

Background

Cancer is a disease of aging, and most people with cancer are older than 65. However, widespread uptake of evidence-based approaches that facilitate quality care delivery for older adults with cancer are lacking. This project aimed to review National Institutes of Health (NIH) grants funded in the last decade that focused on healthcare delivery in aging and older adults with cancer, and to examine grant-related characteristics, study designs, and scientific topics included.

Methods

A search was conducted of all extramural NIH research grants awarded between fiscal year 2012 to 2021. We examined NIH terms; keyword searches of titles, abstracts, and specific aims were implemented to maximize search efficiency. Extraction criteria focused on grant-related and study characteristics. A priori scientific topics for coding included geriatric assessment, care decision-making, communication, care coordination, physical and psychosocial functioning/symptoms, and clinical outcomes.

Results

A total of 48 funded grants met the inclusion criteria. A near-equal split was observed between R03, R21, and R01 grants. Most grants did not include family caregivers or focus on end-of-life care. Most grants included multiple cancers and were conducted during active treatment and in hospital/clinic settings. Common scientific topics included geriatric assessment, care decision-making, physical and psychosocial functioning/symptoms, communication, and care coordination. Few grants focused on cognitive functioning.

Conclusions

Several gaps in the portfolio were identified, including family caregiver inclusion, end-of-life care, and studies focusing on cognitive functioning.