Research in Gerontological Nursing

Empirical Research Supplemental Data

Hospital Palliative Care Teams and Post-Acute Care in Nursing Facilities: An Integrative Review

Joan G. Carpenter, PhD, CRNP, ACHPN

Abstract

Although palliative care consultation teams are common in U.S. hospitals, follow up and outcomes of consultations for frail older adults discharged to nursing facilities are unclear. To summarize and critique research on the care of patients discharged to nursing facilities following a hospital-based palliative care consult, a systematic search of PubMed, CINAHL, Ageline, and PsycINFO was conducted in February 2016. Data from the articles (N = 12) were abstracted and analyzed. The results of 12 articles reflecting research conducted in five countries are presented in narrative form. Two studies focused on nurse perceptions only, three described patient/family/caregiver experiences and needs, and seven described patient-focused outcomes. Collectively, these articles demonstrate that disruption in palliative care service on hospital discharge and nursing facility admission may result in high symptom burden, poor communication, and inadequate coordination of care. High mortality was also noted.

[Res Gerontol Nurs. 2017; 10(1):25–34.]

Abstract

Although palliative care consultation teams are common in U.S. hospitals, follow up and outcomes of consultations for frail older adults discharged to nursing facilities are unclear. To summarize and critique research on the care of patients discharged to nursing facilities following a hospital-based palliative care consult, a systematic search of PubMed, CINAHL, Ageline, and PsycINFO was conducted in February 2016. Data from the articles (N = 12) were abstracted and analyzed. The results of 12 articles reflecting research conducted in five countries are presented in narrative form. Two studies focused on nurse perceptions only, three described patient/family/caregiver experiences and needs, and seven described patient-focused outcomes. Collectively, these articles demonstrate that disruption in palliative care service on hospital discharge and nursing facility admission may result in high symptom burden, poor communication, and inadequate coordination of care. High mortality was also noted.

[Res Gerontol Nurs. 2017; 10(1):25–34.]

Palliative care is person-centered care provided at any point in the illness trajectory to patients with serious or life-limiting disease and their families. Its focus is on pain and symptom management, communication about individual goals of care and treatment choices, and psychological and spiritual support. Palliative care improves quality of life and reduces suffering (National Consensus Project for Quality Palliative Care, 2013; World Health Organization, 2015).

Over the past 15 years, there has been a three-fold increase in the number of palliative care teams in inpatient hospital settings; more than 60% of hospitals with =50 beds report presence of a palliative care team (Center to Advance Palliative Care, n.d.; Dumanovsky et al., 2016). Multiple studies have explored the impact of hospital-based palliative care consultation on patient care and outcomes, financial impact, and the patients' and family caregivers' satisfaction with care (Cassel, Webb-Wright, Holmes, Lyckholm, & Smith, 2010; Chand, Gabriel, Wallace, & Nelson, 2013; May, Normand, & Morrison, 2014). Overall, the literature reports favorable outcomes on pain and symptom management, quality of care, hospital costs, and patient and family satisfaction during hospitalization. However, this empirical evidence is limited in that it does not examine the impact on care delivered during and after discharge.

Care coordination and continuity across settings, including planning for hospital discharge, are considered core components of palliative care (Institute of Medicine, 2014; National Consensus Project for Quality Palliative Care, 2013). Preparation for hospital discharge for patients with life-limiting illness is often complex due to the unpredictable illness trajectory, shifting goals of care, and availability of resources to meet patients' needs. Manfredi et al. (2000) found that their palliative care team contributed to the discharge plan for more than 80% of patients seen for a palliative care consultation. Most patients were cared for in the hospital until death or discharged with hospice support or outpatient palliative care. The remaining patients were discharged to a nursing home or sent home with home health care. It is unclear whether palliative care resources were available beyond the hospital, especially for frail older adults discharged to nursing facilities. Other researchers report that up to 49% of patients who received a palliative care consult in the hospital were discharged to a nursing facility (Cassel et al., 2010; Ciemins, Blum, Nunley, Lasher, & Newman, 2007; Cowan, 2004; Hanson, Usher, Spragens, & Bernard, 2008). The purpose of the current article is to present the findings of an integrative literature review that focuses on the care of patients discharged to nursing facilities following a hospital-based palliative care consult.

Method

Search Strategy

Medical subject heading (MeSH) and non-MeSH terms to identify possible articles for inclusion in the review included palliative, palliative care, palliative medicine, hospital, hospitalization, transfer, discharge, patient transfer, patient discharge, discharge planning, continuity of patient care, nursing home, nursing facility, long-term care, rehabilitation center, skilled nursing facilities, and subacute care. Four electronic databases (i.e., PubMed, CINAHL, Ageline, and PsycINFO) were searched using the following search strategy: “palliative care AND hospital AND discharge [all] AND (nursing home OR nursing facility OR extended care facility).” No limits in dates were applied to capture all research. All English-language articles in the databases as of February 2016 were included. Articles were limited to adults. Because this review integrated data from diverse studies (experimental and nonexperimental), recommendations from Whittemore and Knafl (2005) guided the review approach (Figure 1). The 27 Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Moher, Liberati, Tetzlaff, & Altman, 2009) recommendations provided additional guidance.


Review method steps.

Figure 1.

Review method steps.

Retrieved titles and abstracts were screened for relevance and individual articles were assessed for inclusion (Figure 2). To be included, a study needed to address inpatient hospital palliative care, illness trajectory after hospital discharge, and/or post-hospitalization discharge follow up involving the nursing facility setting. Additional studies were excluded if authors reported only tool testing and development, hospital mortality or in-hospital outcomes, hospice outcomes, palliative home care, or home discharge without inclusion of a nursing facility. Studies that focused on hospice care were excluded due to the empirical evidence that palliative care outcomes are improved when nursing home residents receive hospice care (Stevenson & Bramson, 2009).


Flow diagram of article selection.

Figure 2.

Flow diagram of article selection.

Analysis

Data were abstracted, analyzed systematically, and entered into a matrix with the following topics: (a) study year and authors, (b) study location/setting, (c) research question/hypothesis, (d) study design, (e) sample characteristics, (f) results, (g) strengths, (h) limitations, (i) clinical implications, and (j) research implications. Studies were then categorized by sample type: clinicians, patient/family/caregiver, and patient. Clinician studies included those in which researchers described nurse perceptions of palliative care patients' needs after hospital discharge and nurses' role in maintaining continuity in patient care. Data for these studies were collected through focus groups and semi-structured interviews. Patient/family/caregiver studies described outcomes during and after hospitalization of palliative care interventions targeted at family caregivers, determined how palliative care teams could prepare patients for discharge, and established an understanding of the patient/family experience after discharge. Surveys, individual interviews, videos, and medical records provided data in these studies. Patient studies focused strictly on patient outcomes during and after hospitalization, and primarily relied on administrative databases and surveys for data collection.

To minimize bias, an iterative approach to analysis with constant comparison techniques was used to explore patterns and themes. A report was maintained of logged events during data collection and analysis (Whittemore & Knafl, 2005).

Results

The literature review included 12 articles from all searches and reflected research conducted in five countries from 2001–2013. Indicating the recent growth of palliative care research, 10 articles were published between 2010 and 2015. All articles were original research studies or quality improvement reports published in peer-reviewed journals. Table 1 details the country of study origin, authors, and publication year, and Table A (available in the online version of this article) includes study information.


Study Origin, Authors, and Year

Table 1:

Study Origin, Authors, and Year


Summary Matrix
Summary Matrix
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Table A.

Summary Matrix

Methodological approaches varied, although most studies were pilot work or descriptive (Benzar, Hansen, Kneitel, & Fromme, 2011; Blackford & Street, 2001; Catic et al., 2013; Thon Aamodt, Lie, & Hellesø, 2013). Three studies were longitudinal and conducted over a 1- to 2-year period (Fromme et al., 2006; Kötzsch, Stiel, Heckel, Ostgathe, & Klein, 2015), including one ethnography (Tallman, Greenwald, Reidenouer, & Pantel, 2012). Hospital databases were used to conduct retrospective cohort and matched case control studies (Baldwin et al., 2013; Brody, Ciemins, Newman, & Harrington, 2010; Enguidanos, Vesper, & Lorenz, 2012). One randomized control trial (Gade et al., 2008) and one quality improvement project with repeated measures over a 2-year period (Gerrard et al., 2011) were reviewed.

Researchers focused on nurse perceptions only (two international studies), patient/family/caregiver-oriented research outcomes (three U.S. studies), and patient-oriented outcomes only (five U.S. studies, two international studies). Four themes across the three sample categories were: (a) Symptom Management (e.g., ability to manage, education, information, unmet needs), (b) Communication (e.g., clarity, respecting choices, participation in advance care planning), (c) Care Continuity and Hospital Readmission (e.g., who to contact, timely access to care, care trajectory), and (d) Patient Survival (Table 2).


Main Categories of the Literature

Table 2:

Main Categories of the Literature

Symptom Management: Physical, Psychological, Social, and Spiritual Needs

Researchers in four studies focused on patients' symptom management needs post-discharge (three were qualitative and one was observational). Findings indicated that disruption in palliative care service on hospital discharge and nursing facility admission was concerning due to inadequate coordination of symptom management interventions between the hospital and nursing facility.

The leading concern of 10 bachelor-prepared inpatient oncology nurses in a Norway hospital planning for patient discharge to a nursing home was the lack of clinical capacity and palliative care experience of the nurses in the receiving facility. The hospital nurses believed patients should only be discharged to a nursing home when pain was well controlled. If the nursing home had a specialty palliative care unit, hospital nurses perceived better care delivery, especially for older adults with functional limitations, multiple chronic conditions, and fluctuating symptoms (Thon Aamodt et al., 2013).

In two descriptive studies, patients with various life-limiting diagnoses and their family caregivers identified concerns about their ability to identify and relieve symptoms after hospital discharge, even with a palliative care consult that included substantial emphasis on symptom management. Instructions for managing symptoms were not written, there was no counseling regarding medication dose adjustment, and new problems with existing symptoms occurred. Despite having access to medical and nursing care, family members reported dissatisfaction with the care their loved ones received in nursing facilities (Benzar et al., 2011; Tallman et al., 2012).

Baldwin et al. (2013) used proxy measures to identify potential palliative care needs of 228 medical intensive care unit survivors discharged for post-acute care in nursing facilities. Proxy measures were defined as characteristics indicative of palliative care needs (e.g., presence of wounds indicating symptom burden, psychological distress [e.g., delirium], poor prognosis including advanced cancer) identified by expert input, clinical practice guidelines, and empirical evidence. They found that 88% of the sample had one or more potential palliative care needs.

Tallman et al.'s (2012) longitudinal study of patients and families expanded observation and reporting of ongoing symptom needs after hospital discharge. Family caregivers reported not only that psychological, social, and spiritual needs are important during the hospital palliative care consult, but also that these needs appear to persist months after discharge. However, when other issues (e.g., pain, dyspnea) were more noticeable, psychological, social, and spiritual needs seemed less important to patients and family caregivers (Tallman et al., 2012). Baldwin et al. (2013) also reported that unmet psychological and spiritual needs are especially prominent in older adults discharged to nursing facilities after an intensive care unit stay during hospitalization.

Communication

Poor communication and unmet needs for information and education in the post-discharge setting were reported as problematic by patients, family caregivers, and nurses in three studies (Benzar et al., 2011; Blackford & Street, 2001; Tallman et al., 2012). This finding was also true for patients who had recently left the hospital; some patients and family caregivers did not recall the palliative care team specialists from the hospital consult. When concerns arose, there was difficulty in determining the best individual to answer a question due to the complexity of the health care system. In the months following palliative care consults, patients and family caregivers reported that they continued to require information about advanced illness. In contrast, other researchers found that engaging patients and family caregivers in ongoing communication, education, and advance care planning during and after discharge may result in clearer expectations and care aligned with preferences (Catic et al., 2013; Gerrard et al., 2011).

In the reviewed studies, nurses, patients, and family caregivers reported communication was important. Palliative care nurses reported that ineffective communication with primary care providers of discharged patients negatively impacted care in the nursing home setting (Blackford & Street, 2001). Ineffective communication was described as delays in discharge summaries or transfer notes making it to the post-discharge setting and lack of detail or full information about the events during hospitalization. “Professional territorialism” (Blackford & Street, 2001, p. 276)—the perception of nurses acting outside of their usual role—weakened lines of communication and resulted in unreturned phone calls and an inability to connect with primary care providers after transition of care.

Tallman et al. (2012) noted in an ethnographic study of 12 patient–family caregiver cases (of which two were originally discharged to nursing facilities) over 1 year that family caregivers' need for clear communication of information increased in the post-discharge setting. When discussing needs and concerns, caregivers reported that setting clear expectations for disease trajectory and what to expect in the future was important during the initial palliative care consult. Interruptions in care continuity after discharge were primarily related to how to initiate communication about a new or recurrent issue or symptom, especially for those not using hospice care (Benzar et al., 2011; Tallman et al. 2012).

Palliative care team communication and goals-of-care discussions included asking patients where they want to receive care in the post-discharge period; for some patients with life-limiting illness, this might be the preferred place of care until death. Gerrard et al. (2011) described their U.K. health care system's palliative care team's effort to meet patients' requests to remain in their preferred place of care until death. In this quality improvement project, the stated preferred place of care at discharge was also defined as the preferred place of death for terminally ill patients. Over a 2-year period (2007–2009), the percentage of match between the nursing home as the stated preferred place of care and nursing home death increased from 53% to 100%. The study did not reference where goals were documented and how these outcomes were achieved, thus limiting its usefulness.

A pilot study in the United States that targeted communication, education, and follow up with family caregivers/proxy decision makers of individuals with dementia resulted in greater reported communication and advance care planning discussions at 1 month post-discharge (Catic et al., 2013). A key component of this intervention provided specific follow up with the family caregiver/proxy decision maker 2 weeks post-discharge to review health status, goals and decision making, and need for information. Detailed information about the palliative care consult was also sent to the patient's primary care provider.

Care Continuity and Rehospitalization

Findings in 10 studies suggest that continuity of care hinges on regular, interactive dialogue among patients, family caregivers, and health care providers throughout the course of illness. Researchers who noted lower hospital readmission rates for palliative care patients and more stable care trajectories cited the discharge planning process and continual interaction as the reasons for improved outcomes.

In the post-hospital period, nurses and family caregivers of patients who received palliative care during hospitalization reported greater use of medical services when new symptoms required a change in the plan of care. Frequent visits to the emergency department and subsequent rehospitalization often occurred for acute changes that needed immediate resolution (Tallman et al., 2012; Thon Aamodt et al., 2013). Acute care nurses in Norway anticipated rehospitalization for patients' symptoms that could not be managed in a nursing home (Thon Aamodt et al., 2013).

Enguidanos et al. (2012) observed that of all patients who received palliative care consults and were discharged to nursing facilities, 24% were readmitted at 1 month. When compared to patients discharged with hospice or home palliative care, patients discharged to nursing facilities were five times more likely to be readmitted to the hospital within 30 days of discharge. Baldwin et al. (2013) found that 37% of the sample with potential palliative care needs were readmitted to the hospital from nursing facilities at 6 months (approximately 20% of the sample lived in a nursing home before hospital intensive care admission). Fromme et al. (2006) found that only 10% of their sample was readmitted at 1 month, but it is not clear what proportion of these patients were discharged to and readmitted from nursing facilities (20% of the entire sample transferred to a nursing facility after hospitalization). Despite high hospital readmission rates for palliative care patients, when compared to those receiving usual care, researchers reported that costs were overall reduced, including for those in a skilled nursing facility after palliative care consult during hospitalization (Gade et al., 2008). It is unclear if reduced costs were associated specifically with nursing home discharge rates in this sample.

U.S. researchers found a lower hospital readmission rate at 1 month after discharge with a palliative care education and support intervention for family caregivers of individuals with dementia, most of whom lived in nursing homes (Catic et al., 2013). A key part of the intervention included post-discharge support and contact with the primary care provider. However, this pilot study was not adequately powered to generalize results. Gerrard et al. (2011) also showed that in the United Kingdom, continuing care until death in the preferred place is achievable when patients are asked about their preferences, although preferred place of care and death is subject to change over time as an illness progresses.

Care continuity for nursing home residents was also reported by a research team in Germany (Kötzsch et al., 2015). Patients discharged to nursing homes had the most stable care trajectory, second only to those in hospice care. Approximately one half of discharged patients in the sample were followed by a specialized outpatient palliative care team. Australian palliative care nurse consultants reported good continuity of care when they were able to participate in the discharge planning process, provide clear information to the post-acute care setting about the hospitalization, and follow up after discharge (Blackford & Street, 2001).

Patient Survival

Authors of seven reports included survival after palliative care consult as an outcome. Overall, survival in the nursing home after palliative care during hospitalization is poor. Researchers in Germany and the United States were unique in that they reported survival with different models of palliative care services available in the nursing facility (Catic et al., 2013; Kötzsch et al., 2015). The remaining five articles only reported survival after hospital discharge; it is unknown if and how palliative care was delivered to patients in nursing homes.

Several U.S. research teams have investigated the outcomes of palliative care on discharge disposition and survival. When separating patients who died within 30 days of a palliative care consult and hospital discharge, Brody et al. (2010) reported that 42% of those who died were discharged to a nursing facility. Of those who died 1 to 3 months after palliative care consult and discharge, 20% were discharged to a nursing facility. Although the reported rates of death are statistically significantly lower than those not receiving palliative care, the findings highlight the likelihood that patients are near death at hospital discharge. Another U.S.-based research team reported that at 6 months after palliative care consult and hospital discharge, 24% of all deaths occurred in a nursing facility (Fromme et al., 2006). In comparison, 33% of the sample was discharged to inpatient hospice and 37% to a personal home, with most having hospice support.

Kötzsch et al. (2015) reported that post-hospital survival was lowest (39.8 days) for patients discharged to nursing homes who received palliative care during and after hospitalization as compared with all patients (51.7 days). It is unclear how palliative care services were organized and delivered and how many participants received the services. Of those with palliative care needs in the intensive care unit during hospitalization and discharged to a nursing facility, 40% died at 6 months (Baldwin et al., 2013).

In a study to ascertain outcomes of patients who received inpatient palliative care, Fromme et al. (2006) noted several categories of patients that could be identified based on life expectancy. Of 70 patients who died 1 to 14 days after discharge, approximately 20% were in a nursing home; of 59 patients who died 15 days to 6 months after discharge, 30% were in a nursing home. Based on their findings, the authors suggested that assigning life expectancy categories can lead to more efficient discharge planning (a) if the patient will die in the hospital, (b) if the patient will die within 2 weeks of hospitalization, (c) if the patient will die within 6 months of hospitalization, and (d) if the patient has an unknown life expectancy but has a symptom burden.

Discussion

Symptoms such as pain and dyspnea can be challenging to manage and may cause fear and anxiety for patients and family caregivers. Most concerning in the current review is that despite having access to medical and nursing staff in nursing facilities, patients and families still feel symptoms may not be adequately managed. Pain and other symptoms may be related to a patient's spiritual and psychosocial issues at end of life in addition to the physical experience (e.g., total pain). Some researchers reported that nursing home staff lacked skill in end-of-life care and therefore could have difficulty assessing and managing complex symptoms (Unroe, Cagle, Lane, Callahan, & Miller, 2015). Cognitive impairment inhibits verbal and nonverbal assessment of nursing home residents' pain, and nurses may feel unsure about analgesic safety and use (Burns & McIlfatrick, 2015; Monroe, Carter, Feldt, Tolley, & Cowan, 2012). It is unclear how symptoms are being managed after hospitalization for these patients. For this reason, additional in-depth systematic study of symptom management, psychosocial support for anxiety and depression, and spiritual care in the nursing facility setting is needed.

Communication is the cornerstone of palliative care. The current review demonstrates that advance care planning conversations (about prognosis, goals, and care preferences) and the logistics of when and how to contact palliative care specialists are important for nurses, patients, and family caregivers alike. Discussions about prognosis must be clear and concise to help patients and family caregivers decide if a nursing facility is the best place after hospitalization to care for patients with serious or life-limiting illness. Extensive and complete discharge planning with post-discharge support of palliative care patients is needed to maintain care continuity (King et al., 2013) and reduce rehospitalization when symptoms worsen, new symptoms develop, or goals of care change (Meier & Beresford, 2008).

Advance care planning conversations lead to better outcomes and high-quality care that is consistent with the patient's and family's goals (Bernacki & Block, 2014). None of the research in the current synthesis describes how well palliative care teams match expressed goals of care and actual care delivery in a comprehensive manner. Only one team implementing a quality improvement project reported patient preferred place of care and death; they were limited to reporting outcomes that were not scientifically investigated (Gerrard et al., 2011).

Additional questions about communication, care continuity, and rehospitalization worthy of investigation include:

  • What is the continuity of patients' palliative plan of care from the hospital to the nursing facility?
  • How do patients perceive care delivery after goals are elicited?
  • What causes palliative care patient readmission, and how can rehospitalization be limited to those that are concordant with patient and family care preferences?
  • What community-based palliative care services are available for nursing facility residents?

It is concerning that when compared to patients discharged to personal homes, some researchers report higher mortality for those discharged to nursing facilities. This finding may be because patients who are discharged to nursing facilities are relatively sicker and may be closer to death than those discharged to personal homes. Patients are often admitted to nursing facilities for nursing and rehabilitative care to improve or stabilize their overall condition. In this context, patients' and family caregivers' confusion may grow about goals of care in serious life-threatening illness when improvement is not realistic. Barriers to providing palliative care in U.S. nursing homes have been widely documented. These challenges include regulatory and economic issues (specifically reimbursement policy), staff education and training, the facility culture, and lack of administrative support and leadership (Center to Advance Palliative Care, 2008). Because of these challenges, additional research is needed to determine how well nursing facilities are able to implement hospital palliative care recommendations into nursing and rehabilitative care. Remaining questions include:

  • How are hospital palliative care teams and nursing facilities aligning goals with care?
  • How do patients and/or families perceive adherence to goals of care after hospital discharge with a palliative care consult?

Implications for Future Research

Most of the reviewed studies were descriptive, observational, and exploratory. One experimental randomized controlled trial looked primarily at costs after discharge and did not separate outcomes of patients discharged to nursing facilities. Researchers who used cross-sectional retrospective designs on large administrative databases reported findings limited to survival and likelihood of hospice admission. A strength of the reviewed literature is that several researchers focused on in-depth individual experiences. Comprehensive study of personal perspectives through interviews, medical record reviews, and longitudinal designs allowed for reporting person-focused outcomes—in one instance, up to 1 year after a palliative care consult.

Synthesizing a body of literature of palliative care and nursing facility research conducted in different countries using various methods is challenging. The first major issue encountered while analyzing this research was that inpatient and outpatient palliative care are defined, managed, and delivered differently internationally. For example, health care professionals in Norway follow formal recommendations for generalist palliative care, specialist palliative care, and a palliative care approach in primary care. For the most part, palliative care is widely available, community-based care that is delivered in the home environment (Thon Aamodt et al., 2013). The second factor was that nursing homes do not deliver palliative care uniformly from country to country. In Germany, palliative care is considered a health care right and palliative care principles are integrated into nursing homes, where patients are expected to live until they die (Kötzsch et al., 2015). The findings of international literature are of limited use in the United States because of different reimbursement structures and health care systems, and palliative care is not defined, operationalized, or paid for in the same way.

Gleaning knowledge from international research can shape the development and advancement of palliative care research in the United States. For example, in the international literature, there was less emphasis on studying survival. Instead, teams focused on studying care continuity (Kötzsch et al., 2015), clinician perceptions (Blackford & Street, 2001; Thon Aamodt et al., 2013), and patient preferences (Gerrard et al., 2011).

Two implications of this review include a need for studying how well pain and symptoms are managed and how promptly prognoses and goals of care are readdressed after hospital discharge. Longitudinal systematic studies of how well palliative care teams are able to match a patient's care to his or her care preferences is needed. Prospective person-level narratives or case studies of individual preferences and care follow-through would allow for a better understanding of these outcomes.

For health care providers, a better understanding of the benefits of clear, concise communication during discharge planning is needed. One approach is for clinicians to consider a patient's symptom burden and functional status (e.g., ability to perform daily living activities) as a predictor of survival and integrate this information into discussions when planning for hospital discharge and continued care.

Conclusion

There is no available systematic study on how palliative care teams are managing post-hospital transitions and care for patients discharged to nursing facilities. The current findings demonstrate a deficiency in understanding the post-hospital experience after a palliative care consult. The literature does not describe integration and follow-through of palliative care after hospitalization, including whether recommendations are implemented and followed in the post-acute care setting. Multiple studies have shown that palliative care improves care satisfaction during hospitalization and does not reduce survival when compared to a patient receiving usual care. Empirical study of palliative care in nursing homes after hospitalization is needed to determine whether similar outcomes are attainable.

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Study Origin, Authors, and Year

Country of OriginAuthors and Year
United States (n = 8)Baldwin et al. (2013); Benzar, Hansen, Kneitel, & Fromme (2011); Brody, Ciemins, Newman, & Harrington (2010); Catic et al. (2013); Enguidanos, Vesper, & Lorenz (2012); Fromme et al. (2006); Gade et al. (2008); Tallman, Greenwald, Reidenouer, & Pantel (2012)
Australia (n = 1)Blackford & Street (2001)
United Kingdom (n = 1)Gerrard et al. (2011)
Germany (n = 1)Kötzsch, Stiel, Heckel, Ostgathe, & Klein (2015)
Norway (n = 1)Thon Aamodt, Lie, & Hellesø (2013)

Main Categories of the Literature

ThemeFindings
CommunicationUnclear understanding of prognosis
Need for information and knowledge sharing
Need to clarify care goals
Who to contact for needs
Honoring preferences
Symptom managementUnmet physical, psychological, spiritual, and social needs
What to expect (preparation)
How to manage (education)
Caregiver support
Care continuity and rehospitalizationCare coordination
Access to specialized care after hospitalization
Trajectory (stable with continued care, unstable without continued care)
Costs
Patient survivalNeed to determine life expectancy for hospital discharge planning
High mortality rates reported for those discharged to nursing homes

Summary Matrix

Sample TypeAuthorsSamplePurpose

Methods

Variables and Measurements (when applicable)

Results

Strengths/Limitations

Clinicians
Blackford et al., 200129 palliative care service nurses in focus groups 11 specialist palliative care nurses in key informant interviews (no other sample description provided)Describe the role of palliative care nurse consultants in hospitals in maintaining continuity of care between acute care and the community.

Qualitative approach with focus groups and semi structured interviews

Interview questions focused on communication strategies, difficulties, and recommendations to overcome difficulties

○ Additional probing used

Content analysis

After discharge, ineffective communication and professional territorialism resulted in poor care continuity and coordination, especially when sent to nursing homes.

Strengths: Use of focus groups and individual interviews for data triangulation. Analytic categories informed by previous research.

Limitations: Sample not described well (no mean age, education, experience), no data displays of codes, categories, themes provided.

Thon Aamodt et al., 201310 Generalist nurses with Bachelor's degree in nursing and 2–9 years' experience caring for cancer/palliative patients (mean age=31 years)Explore: 1) how surgical nurses assess gastrointestinal cancer patients with palliative care needs and 2) the implications of their assessment for the discharge destination.

Qualitative approach with two focus group interviews

Interview questions focused on nurses experiences caring for patients with palliative care needs including where palliative cancer patients are discharged

Complexity of patient health status and perceived competency of nurses at discharge destination resulted in reluctance to discharge patients to nursing homes without specialty palliative care.

Strengths: Data analyzed using a structured five step process

Limitations: Focus on oncology limits transferability, potential sample bias due to sample recruitment by hospital nurses in leadership roles.

Patient/Family/Caregivers
Benzar et al., 2011Various diagnoses 19 patients (mean age 66 years)

2 discharged to nursing home after hospital

19 caregivers (mean age 50 years)
Describe: 1) the post-hospital health care experiences of patients and family caregivers who receive palliative care consults; 2) Understand how palliative care teams can prepare patients and family caregivers for care after discharge.

Retrospective qualitative approach using semi-structured interviews and medical record review

Interview questions focused on experience after discharge, quality of discharge process

Analyzed using qualitative description

Three main themes related to discharge:

Prognosis (vague and unclear information)

Symptom management (inadequate preparation to recognize/treat symptoms)

Whom to call with questions (knowing who to contact for problems)

Strengths: In depth data collection representing patients with various diagnoses.

Limitations: No data displays of codes, categories, or themes provided limiting trustworthiness.

Catic et al., 2013All with dementia 24 control patients/families (mean age 85.4 years) 5 intervention patients/families (mean age 85.4 years)

4 of 5 resided in nursing home

Describe experience of designing, implementing, and pilot testing a dementia consult service that addressed key palliative care issues in advanced dementia (delivered by clinicians trained in geriatrics and palliative care).

Intervention included inpatient consult, educational support, postdischarge follow-up with proxy decision makers

Preliminary data was collected 3-months prior (control) and 3-months after (intervention) from electronic medical record (EMR) and telephone interviews

Pilot project, descriptive statistics only

Variables/Measurement:

Baseline EMR data: demographic information, admitting service, and comorbid conditions. Proxies: Bedford Alzheimer's Nursing Severity-Subscale, length of stay, discharge diagnosis, use of burdensome interventions (identified as: intravenous therapy, venipunctures, artificial ventilation, restraints, and feeding tubes), radiological examinations, advance directives, and goals of care discussions between proxy and providers

○ Baseline proxy data: demographic information, whether they lived with the resident, hours spent providing direct patient care each week, and the primary goal of care

○ Follow-up proxy interview: death, tube-feeding, re-hospitalizations, emergency room visits, hospice referral, and comfort (Symptom Management at the End-of-Life in Dementia Scale), knowledge of advanced dementia, preparedness about advanced dementia, goals of care, quality of communication with hospital providers (Quality of Communication scale), and satisfaction with hospital care (Satisfaction with Care at the End-of-Life in Dementia scale)

During hospitalization, there was a high rate of intravenous treatments, venipunctures, and radiologic exams; however, 86% of patient proxies stated comfort was the goal of care. By one month after hospital discharge, 24.1% of all the patients had died. Intervention group subjects reported better outcomes (greater knowledge, better communication, more advance-care planning, lower rehospitalization, and fewer feeding tube insertions).

Strengths: Multifaceted intervention, well described and could be replicated

Limitations: Not powered to detect statistical differences between groups

Tallman et al., 2012Various diagnoses 12 patients and families who received palliative care consult (age range 46–89, no mean provided)

2 discharged to nursing home

Investigate the care experience of patients and families during and after palliative care consultation to improve the quality of palliative care and the care experience.

Qualitative anthropologic longitudinal approach over 1 year with video-ethnography (observations) and interviews

Interview questions focused on their experiences, needs, concerns, and events

Analyzed with constant comparison focusing on met and unmet needs

Five themes related to care along the illness trajectory identified but varied in importance:

Sensitive, effective communication about advanced illness

Timely access to coordinated medical care

Respect for and honoring care decisions

Psychological, social, and spiritual needs

Family caregiver support

Needs related to communication, access to medical care, and caregiver support increased in the time up to one year after hospital discharge with a palliative care consult.

Strengths: Extended time following participants allowed for rich description.

Limitations: Coding not well described; no displays of codes, categories, or themes provided limiting trustworthiness.

Patient
Enguidanos et al., 2012Various diagnoses, majority with cancer 408 patients survived to discharge after palliative care consult (mean age=80.1 years)

14.2% discharged to nursing homes

Identify factors associated with 30 day hospital readmission after inpatient palliative care consultation. Hypothesis: Ethnicity, age, pain, anxiety, and discharge disposition would be related to 30-day hospital readmissions.

Observational, retrospective medical record review

Logistic regression

Variables/Measurement: Discharge disposition, pain (scale ranging from 0 to 10), anxiety (Modified City of Hope Patient Questionnaire Emotional/Relationship Area Scales), presence of advance directive

Of all patients discharged after a palliative care consult, 10% were readmitted at 30 days. The top location from which patients were readmitted was the nursing facility (34.1%, or 14 of 41 readmissions). Of all patients discharged to nursing facilities, 24.1% were readmitted (14 of 58 patients discharged to a nursing facility). Those discharged to nursing facilities were five times more likely to be readmitted to the hospital within 30 days of hospital discharge compared to those using hospice or in home palliative care (OR=4.972; 95% CI 1.45–17.01). Suggests that needs are not being met in nursing facility.

Strengths: Sample diverse in ethnicity and represented patients with multiple diagnoses.

Limitations: Information on receipt of hospice care within the nursing facility was unavailable (unclear hospice care may have/have not influenced care).

Brody et al., 2010Various diagnoses, majority with cancer 361 matched patient pairs of usual care (mean age=68.6 years) vs palliative care (mean age=68.5 years)

Discharge to skilled nursing facility: usual care 95 (26.3%), palliative care 106 (29.4%)

Evaluate the impact of an inpatient palliative care team on discharge disposition

Observational, retrospective database extraction

Multivariate modeling, compared palliative care to usual care (matched pairs)

Variables/Measurement: Matched on diagnosis, illness severity, age, hospital days in the previous year. Dependent variables: discharged home without services (comparison group), discharged home with services, discharged to another facility, and discharged to hospice.

Of patients who died within 30 days of hospital discharge, 42% had received palliative care and were discharged to a skilled nursing facility.Of patients who died within 31–90 days of hospital discharge, 20.3% had received palliative care and were discharged to a skilled nursing facility. At the end of life, when compared with usual care patients, fewer patients seen by the palliative care team were discharged to a skilled nursing facility (p<0.0001). Those who received palliative care consults were more likely to receive continued care post discharge in the form of hospice care. It is unclear if nursing home patients benefited from continued palliative care in this study.

Strengths: Comparison of care demonstrates value of palliative care. Only 7 cases could not be matched and used three sites-improves generalizability.

Limitations: Matching poses selection bias (characteristics of those who originally received palliative care – accepted or refused and palliative care patients had slightly longer length of stay than usual care patients).

Fromme et al., 2006Various diagnoses, majority with cancer 183 patients survived to discharge after palliative care consult (mean age=60 years)

20% discharged to nursing home

Characterize outcomes (discharge disposition, survival, and location of death) for patients 6 months after palliative care consult.

Prospective observational longitudinal survey using data collected at time of consult from medical record and at 6 months from administrative database.

Summary analyses

Variables/Measurement: Initial data collection-reason for consult and key elements of consult, demographics, diagnosis, length of stay, insurance status, hospital charges, discharge disposition, and readmissions. Follow up data-status at 6 months (alive, date of death).

63% of palliative care patients were discharged alive (183/292). 10% of discharged patients were readmitted within 30 days. 50% of palliative care patients were seen for discharge planning and to clarify goals. 20% were discharged to nursing facility. Of the 70 patients who died 1–14 days after discharge, 18.6% were in a nursing home (27.1% were at home, 48.6% had inpatient hospice). Of the 59 who died within 15 days to 6 months, 30.5% were in a nursing home (49.2% were at home, 15.3% had inpatient hospice). Researchers determined categories of patients who need to be identified based on life expectancy: (1) the patient will die in the hospital, (2) the patient will die within two weeks of hospitalization, (3) the patient will die within six months of hospitalization, or (4) the patient has an unknown life expectancy but has a tremendous symptom burden and need for palliative care. This suggests a need for continuity outside of the hospital.

Strengths: Separates out discharge location and outcomes, used multiple data sources to minimize missing data. Data collection tool was pilot tested and revised, death data collected longitudinally (includes those who died before end of study).

Limitations: Causality is unclear (effect of consult on outcomes and potential covariates). Single site.

Baldwin et al., 2013Various diagnoses, majority with infections/sepsis 228 medical intensive care unit survivors (mean age=79 years)

all discharged to post-acute care

Explore potential palliative care needs of older intensive care unit patients who survive to discharge to post–acute care facilities (skilled-nursing facilities, long-term care facilities, long-term acute care facilities, inpatient rehabilitation centers, or subacute rehabilitation centers).

Retrospective medical record review using claims data, discharge summaries, orders and prescriptions.

Summary analyses and prevalence of characteristics suggestive of palliative care needs.

Variables/Measurement: age, sex, race, and admission from or discharge to a post–acute care facility, principal diagnosis for hospitalization, Charlson comorbidities, use of mechanical ventilation, and hospital, intensive care unit (ICU) length of stay, date of death, hospital and ICU readmission,

Primary outcomes: 1) characteristics suggestive of potential palliative care needs, 2) receipt of a palliative care consultation during the hospitalization, and 3) 6-month mortality after hospital discharge.

Of those who were discharged to postacute care, the most common characteristics of palliative care needs were wounds (n=51, 22%), oxygen use at discharge (n=84, 37%), chaplain consultation during hospitalization (n=38, 17%), delirium/dementia (n=88, 39%), and presence of a do not resuscitate order (n=53, 23%). Average intensive care length of stay was 5 days; average hospital length of stay was 17 days. Six-month hospital readmission and mortality rate were up to 40%. Only six patients in the sample received palliative care consults during hospitalization. There were no reported outcomes on the six who received consults. Patients with potential unmet palliative care needs were discharged to nursing facilities. No outcomes were reported in the nursing facility.

Strengths: Diverse sample of very seriously ill patients.

Limitations: Characteristics (“proxy measures”) suggestive of palliative care needs collected from interventions provided and diagnoses in claims data and medical records, not patient/caregiver report (not subjective report). Single site.

Gade et al., 2008Various diagnose, majority with cancer 237 received usual care (mean age=73.1 years) 275 received palliative care (mean age=73.6 years) Number discharged to nursing home not specified.Hypothesis: An interdisciplinary inpatient palliative care consultative service would demonstrate improved symptom control, increase patient satisfaction with care and decrease the cost of health services received over the subsequent 6 months after hospital discharge.

3 site prospective randomized trial comparing palliative care to usual care

Variables/Measurement: Modified City of Hope Patient Questionnaires (Physical, Emotional/Relationship Area and Spiritual Area scales, Place of Care Environment scale and the Doctors, Nurses/Other Care Providers Communication scale, Eastern Cooperative Oncology Group performance scale, costs, and hospice measures (number of days to enrollment, length of stay), mortality.

There was no difference in survival after hospital discharge between the palliative care consult patients (median survival= 43.0 days) and the usual care patients (median survival=43.5 days) (p=0.08). Costs of health services in the six months following discharge, including skilled nursing facility admissions for the palliative care group, were lower (palliative care: $14,486; UC: $21,252, p <0.001). Advance directive completion was higher in the palliative care group (91.1% vs. 77.8%; p <0.001). There were no reported outcomes specific to nursing facility patients.

Strengths: Randomized controlled trial of 3 sites allows for generalizability.

Limitations: Unable to ascertain how care setting may have minimized costs.

Gerrard et al., 2011236 in 2007 (mean age=78 years)

17 in nursing home

275 in 2009 (mean age=72 years)

12 in nursing home

Quality improvement project (audit) to document the number of patients who die in their preferred place of care after palliative care team consult.

Retrospective medical record review

Pre and post chart audit between 2007 and 2009

Variables/Measurement: question about preferred place of care prior to discharge (or expected death). This location was assumed to be the preferred place of death.

In a two-year span, the percentage of patients who stated the nursing home was their preferred place of care and who went on to die in the nursing home rose from 53% to 100%. Preferred place of care is easier to discuss than preferred place of death. Preferred place of care was noted to change over time: 37% of patients changed their minds of their preferred place of care. This implies a need for continuing communication throughout illness.

Strengths: Attempted to determine how well team adhered to expressed preferences for care.

Limitations: No data on how preferences may have changed over time. Preferred place of care was also assumed to be the preferred place of death-this concept was not referenced as a reliable method to ascertain end of life preferences.

Kötzsch et al., 2014Various diagnoses, majority with cancer 245 patients received specialized palliative care either on a dedicated unit or via consult (mean age= 65.1 years)

11% discharged to nursing home

Determine care trajectories and survival after palliative care in a specialized unit or hospital consult.

Prospective observational study from hospital discharge until death.

Variables/Measurements: German Hospice and Palliative Evaluation (HOPE), Primary care providers were interviewed every four weeks until patient's death about: information on the patients' disease and care trajectory, current symptoms, medication for symptom management, non-medical measures, readmissions to hospital (including reason), interventions and health care services.

Survival from time of discharge for all subjects was 51.7 days. Nursing home patients had the lowest mean survival, at 39.8 days. 66.7% of those discharged to nursing homes were considered to have a “stable care trajectory,” defined as minimal changes in care setting for nursing home patients.

Strengths: Detailed protocol for following patients (if placed under care of different providers) minimized missing data about care trajectory.

Limitations: Data was provided by providers, not from patients, limiting reliability of reported symptoms, medication use, and non-medical intervention. Unclear if stable trajectory attributed to palliative care or confounding variables.

Authors

Dr. Carpenter is Postdoctoral Nurse Research Fellow, Corporal Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania.

Dr. Carpenter was a 2011–2013 Archbold Scholar supported by the John A. Hartford Foundation's National Hartford Centers of Gerontological Nursing Excellence Award Program. This study was also supported by the National Institute of Nursing Research of the National Institutes of Health (NIH) (T32NR013456 and F31NR014608). The content is solely the responsibility of the author and does not necessarily represent the official views of the NIH. The funding organization had no role in the design and conduct of the study or in the preparation, review, or approval of the manuscript.

The author thanks Dr. Patricia Berry, who read the manuscript and provided critical comments.

Address correspondence to Joan G. Carpenter, PhD, CRNP, ACHPN, Postdoctoral Nurse Research Fellow, Corporal Michael J. Crescenz Veterans Affairs Medical Center, 3900 Woodland Avenue, Building 4100, Philadelphia, PA 19104; e-mail: Joan.Carpenter@va.gov.

Received: May 05, 2016
Accepted: October 24, 2016

10.3928/19404921-20161209-02

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