Palliative Care and Infection Management at End-of-Life in U.S. Nursing Homes: A Descriptive National Survey

Introduction

Nursing homes are becoming an important healthcare sector for the provision of skilled nursing and end of life care across several countries. The population of those 65 years and older constitutes nearly 80% of the total 1.5 million nursing home users in the U.S., and more than half of these individuals are in the oldest age group (i.e., age 85 years and older).(1) In Australia, about 80% of those who died in 2010-2011 aged 65 or over had used aged care services in the eight years prior to their death.(2) In the United Kingdom, nursing homes (known as care homes) are an increasingly common part of clinical practice for end-of-life care.(3) Furthermore in the U.S., it is projected that the demand for nursing homes will continue to rise over the next few decades in conjunction with the aging baby boomer generation; by 2050, the number of older people in the U.S. is expected to reach approximately 84 million, nearly double the 43 million reported in the 2012 census report.(4)

Long-term nursing home residents have different healthcare needs than that of other healthcare users (e.g., short-term residents receiving rehabilitative care or patients from acute care facilities). These residents are more likely to have two or more chronic conditions,(5–7) be living with serious/advanced illnesses,(8, 9) and be nearing the end of their lives.(1, 10) Decreased immune function and limited physical mobility among older long-term nursing home residents place them at risk of experiencing negative health outcomes such as healthcare-associated infections,(11–14) adverse effects from antibiotics use,(15–18) and increased physical suffering.(19–22) Furthermore, infections are common at end of life and are associated with high rates of morbidity and mortality.(14, 23) Infections are also recognized as one of the main risk factors for burdensome care transitions (defined as nursing home resident transfer to acute care facilities at end of life),(24–26) which can lead to increased financial burden(17, 27) as well as receipt of unwanted and often invasive procedures that may contradict a dying patient’s wishes.(28) Moreover, the problem of infections in nursing homes has led to a subsequent over and mis-use of antibiotics, which has increased risk for multiple drug resistant organisms and other adverse outcomes (e.g., Clostridium difficile).(29–31)

Systematic efforts have been undertaken to promote appropriate antibiotic use (i.e., antibiotic stewardship) and to reduce adverse effects of antibiotics. Although such programs were shown to be highly effective in the reduction of antibiotic-related adverse effects and care-related costs,(32–37) data were largely limited to hospital settings. It has been argued that implementation of antibiotic stewardship in nursing homes presents unique challenges due to the high volume of frail individuals with complex medical conditions and lack of resources (e.g., diagnostic testing equipment and/or local antibiotic resistance data).(13, 38–40) Consequently, up to 80% of terminally ill nursing home residents receive antibiotics.(41–44) Strategies to prevent overutilization or inappropriate use of antibiotics is critical in the nursing home setting, in order to enhance quality of care while minimizing potential harms.

The Centers for Medicare and Medicaid Services has a network of contractors called Quality Improvement Organizations Quality Innovation Network (QIN-QIO) that seek to prevent infections in nursing home residents and improve antibiotic stewardship in these settings.(45, 46) One of the ways the QIN-QIOs do this is through supporting nursing homes to enroll and participate in the Centers for Disease Control and Prevention’s the National Healthcare Safety Network (NHSN), an internet based infection surveillance tool designed to aid in the tracking and reporting of infections.(47, 48)

Rather than providing aggressive treatments, which heavily focus on the life-prolongation and can inadvertently cause more suffering, a timely introduction of palliative care should be a high priority for nursing home residents at end of life. Palliative care is an interdisciplinary specialty that focuses on symptom management and quality of life for individuals living with serious illnesses.(49–51) Palliative care is associated with fewer burdensome care transfers,(52, 53) enhanced symptom management,(54–56) higher care satisfaction,(54, 57) and lower use of aggressive medical treatments (e.g., intravenous antibiotics).(55, 57, 58) Compared to hospice care, which requires care recipients to have a life expectancy of 6 months or less,(49, 59) palliative care should occur earlier along the continuum of care and may be more appropriate for long-term nursing home residents who have less predictable illness trajectories.(60, 61)

Improving palliative care in nursing homes has been proposed as one key strategy to improve infection management and reduce antibiotics use at the end of life.(62) Previous researchers have found that palliative care is a highly effective approach to meet three important aims in end of life care:1) improved care experiences,(63, 64) 2) improved health,(65) and 3) reduced use of unnecessary medical interventions.(66) It is the latter that explains how palliative care may help reduce inappropriate use of antibiotics in the nursing home population. With advance care planning discussions, patient preferences for level of care and types of medical interventions (i.e., antibiotics and/or hospital transfer for future infection) are elicited.(67–69) Documented care preferences can later serve as an important guide in determining whether the use of these potentially burdensome treatments at end of life aligns with a dying patient’s care wishes. Our objective is to describe the integration of palliative care and infection management practices at end of life in US nursing homes.

Methods

From a nationally representative stratified random sample of nursing homes, we collected systematic information. The cross sectional facility-level survey included questions regarding the nursing palliative care processes as well as the integration of infection management and palliative care at the end of life. Our reporting of the methods and results follows the Checklist for Reporting Results of Internet E-Surveys (CHERRIES).(70)

Sample.

We identified nursing homes from the 2016 Certification and Survey Provider Enhanced Reporting (CASPER) data. Nursing homes were eligible if they were non-specialized, free-standing nursing homes with at least 30 beds and a CASPER assessment date of 2014 or later. Smaller nursing homes (i.e. those with fewer than 30 beds) were excluded because they are different than the vast majority of facilities that care for the majority of residents across the nation. Random sampling was stratified by QIN-QIO region (an equal number of nursing homes across each of the 14 regions) and NHSN enrollment (30% of all sampled nursing homes were enrolled in NHSN) to increase the probability that the sample is representative of the nation. In addition, because this analysis is part of a larger study investigating how infection prevention in nursing homes has changed over time, a subset of our sample participated in a prior survey conducted by the research team of the larger study (988 nursing homes that completed surveys in 2013–2014).(71)

Recruitment.

Using previously successful methods, recruitment occurred in waves of 200–300 nursing homes each. The Director of Nursing at each nursing home was mailed an invitation letter with instructions for survey completion. Respondents were given the option to respond via Web or mail. Incentives included $25 gift cards for completed surveys and inclusion in $250 lotteries for those who returned the survey within one month. Paper-based surveys were entered into an electronic database, and data quality was checked through double data entry of a random sample of 10% of the surveys.

Data collection.

We administered our cross-sectional facility-level survey to 1,820 nursing homes Directors of Nursing between November 2017 and October 2018. Data from paper-based surveys were entered into an online database and double data entry was done on 10% of the sample to check for data entry accuracy. Web and paper-based survey data were combined into a single analytical dataset. Further details of the survey development, sampling strategy and recruitment methods are published elsewhere.(72) All procedures were approved by Columbia University Institutional Review Board (protocol number IRB-AAAR1564). Approval was granted on January 10^th, 2017.

Measures.

Integration of infection management and palliative care was operationalized using a number of measures. First, eliciting preferences for infection management practices among in terminally ill residents was measured using two questions each with 4 items. One question focused on how often resident and family preferences for infection management are considered and the other focused on facility level practices for infection management at end of life. These questions also used a 4-point Likert scale ranging from “Rarely” to “Almost Always”. In addition, a vignette was included describing an advanced stage Alzheimer’s patient near the end of life as follows: “Ms. Davis has been in your facility for 4 months. On admission, she was ambulatory and needed total assistance with feeding. She was admitted with advanced heart disease, osteoporosis, a right hip fracture, and Alzheimer’s disease. She takes oxycodone 10 mg every 6 hours for pain. In the past month, you notice she is eating less, has lost 10 pounds, and coughs when drinking. Ms. Davis no longer recognizes her family.” The vignette then presented two scenarios. Scenario 1 suggested Ms. Davis may have an aspiration pneumonia [7 items]. Scenario 2 suggested Ms. Davis may have a urinary tract infection (UTI; 3 items). Under each scenario, the care practices or orders that would be in place in the case were listed and respondents were instructed to select how likely it would occur. All responses were scored on a 3-point Likert scale ranging from “Not at all Likely” to “Very Likely”.

Data Analysis.

Weights to adjust for differential probabilities of inclusion and response in the study were constructed.(72) Question responses were standardized by dividing the highest possible values and multiplying by 100. Weighted descriptive statistics, including frequencies, standardized means (µ) and standard errors (SE), were computed using SAS, version 9.4.

Results

We received 892 completed surveys for a 49% response rate.(72) With the weighted sample, the results represent 15,381 nursing homes across the U.S.

We examined the elicitation of infection management preferences at the end of life. Table 1 describes the results regarding the elicitation of infection management preferences at the end of life. On average, for those that are terminally ill resident’ or families’ preferences for infection management was more likely to be elicited following a change in condition such as developing a fever (µ = 84.93, SE = 0.82) or an event such as aspiration (µ = 82.29, SE = 0.88), and less likely during care plan meetings (µ =7 5.83, SE = 0.98), or upon admission (µ = 72.56, SE = 1.11). Just over half (55-60%) of nursing home facilities almost always elicited these preferences during a change in condition versus eliciting preferences upon admission or care plan meetings (about 45% of all nursing homes). On average, nursing homes frequently included residents and resident proxies in treatment decisions for suspected infections near the end of life (µ = 91.77, SE = 0.62), considered residents’ goals in managing care (µ = 90.16, SE = 0.65), and adhered to standard infection control policies such as isolation precautions during end of life care (µ = 90.02, SE = 0.73). Just over half of all nursing homes (52.80%) gave antibiotics near the end of life.

Table 1:

Weighted Distribution of Eliciting Preferences for Infection Management Practices in Terminally Ill Residents of US Nursing Homes (n = 892, weighted n = 15,381)

How often does your facility elicit residents’/families’ preferences for infection management (such as antibiotic use) for terminally ill residents in the following situations:	Weighted Means		Rarely		Sometimes		Often		Almost Always		Don’t know/Missing
	Mean	SE of Mean	%	SE	%	SE	%	SE	%	SE	%	SE
When a resident’s condition changes, such as developing a fever?	84.93	0.82	3.99	0.77	12.64	1.22	22.09	1.53	59.72	1.82	0.78	0.27
Following an event such as an aspiration?	82.29	0.88	5.92	0.90	14.50	1.29	22.13	1.54	54.71	1.84	1.37	0.37
During care plan meetings?	75.83	0.98	10.24	1.12	21.22	1.51	20.94	1.51	44.92	1.84	1.34	0.41
On admission?	72.56	1.11	17.13	1.40	19.73	1.49	14.03	1.31	44.64	1.84	2.24	0.49
How often does your facility…
Include residents and resident proxies in treatment decisions for suspected infections near the end-of-life?	91.77	0.62	1.77	0.48	5.40	0.87	16.33	1.38	75.07	1.62	0.71	0.29
Consider residents’ goals of care in managing suspected infections near the end-of-life?	90.16	0.65	1.74	0.47	6.89	0.96	20.00	1.47	70.41	1.70	0.48	0.25
Adhere to standard infection control policies such as isolation precautions during end-of-life care?	90.02	0.73	4.14	0.72	7.15	0.93	12.68	1.24	74.77	1.60	0.63	0.24
Give antibiotics near the end-of-life?*	52.76	0.79	21.41	1.51	52.80	1.85	14.71	1.38	8.73	1.03	1.18	0.35

^*Lower value indicates positive results

Table 2 presents the results from the vignette. On average, in the event of symptoms consistent with an aspiration pneumonia, nursing home residents were likely to have a “Do Not Resuscitate” (µ = 83.71, SE = 0.76) and nursing home staff were likely to ask the proxy how to manage the suspected infection (µ = 80.83, SE = 0.89). Having “Palliative/Comfort Measures” order and a “Do Not Hospitalize” order, were less frequent on average (µ = 67.33, SE = 0.90; µ = 64.02, SE = 0.92, respectively). On average, about 2/3 of nursing homes would send a terminally ill resident suspected of an aspiration pneumonia to the hospital (µ = 59.43, SE = 0.83). Half of all nursing home facilities (50.23% of all nursing homes) were somewhat likely to send the patient to the hospital in the event of aspiration pneumonia. Medical providers deciding how to manage care without asking the patient proxy and having a “Do Not Administer Antibiotics” order occurred in about half of the nursing homes (µ = 51.77, SE = 0.97; µ = 47.80, SE = 0.75, respectively).

Table 2:

Weighted Distribution of Vignette-based Palliative Care and Infection Management Processes among US Nursing Homes (n = 892, weighted n = 15,381)¹

Scenario 1: Over the past 24 hours, Ms. Davis developed a fever, cough, and shortness of breath and the clinical exam suggested an aspiration pneumonia
In your facility, how likely is it that the follow orders would be in place…	Weighted Means		Not at all likely		Somewhat likely		Very likely		Don’t know
	Mean	SE of Mean	%	SE	%	SE	%	SE	%	SE
“Do Not Resuscitate” order	83.71	0.76	5.77	0.88	36.98	1.81	56.50	1.85	0.75	0.31
The proxy would be asked how to manage the suspected infection	80.83	0.89	13.10	1.28	31.10	1.72	55.42	1.85	0.38	0.17
Orders reflecting “Palliative/Comfort Measures” only	67.33	0.90	24.42	1.62	48.48	1.85	26.40	1.63	0.70	0.28
“Do Not Hospitalize” order	64.02	0.92	31.35	1.75	43.99	1.84	23.51	1.54	1.14	0.39
Patient would be sent to the hospital	59.43	0.83	34.90	1.76	50.23	1.85	13.48	1.28	1.38	0.41
The medical providers would decide how to manage care without asking proxy	51.77	0.97	61.56	1.81	20.42	1.50	17.22	21.42	0.80	0.34
“Do Not Administer Antibiotics” order	47.80	0.75	63.24	1.75	28.40	1.63	7.27	0.89	1.09	0.40
Scenario 2: Over the past 24 hours, Ms. Davis appears more confused and her family mentions to the nurse that her urine looks dark and asks if she has a urinary tract infection
In your facility, how likely is it that…	Weighted Means		Not at all likely		Somewhat likely		Very likely		Don’t know
	Mean	SE of Mean	%	SE	%	SE	%	SE	%	SE
A straight catheter would be used to collect a urine sample	66.62	0.98	30.32	1.67	38.56	1.80	30.18	1.75	0.94	0.37
Treated with antibiotics	61.97	0.88	31.67	1.71	48.95	1.85	17.81	1.46	1.56	0.46
Treated ONLY with measures such as analgesics and oxygen to reduce discomfort (i.e., no antibiotics)	58.87	0.85	37.30	1.81	46.77	1.85	14.29	1.27	1.65	0.49

In nursing homes across the country, if a UTI was suspected at the end of life, a straight catheter would be used to collect a urine sample and the patient would be treated with antibiotics over 2/3^rd of the time (µ = 66.62, SE = 0.98; µ = 61.97, SE = 0.88, respectively). Treating only with comfort measures and no antibiotics was less likely to occur.

Discussion

Main findings

Using a representative sample of U.S. nursing homes, we described how nursing homes integrate infection management practices. To our knowledge, this is the first survey of infection management practices at end of life in U.S. nursing home settings. We noted a majority of nursing homes almost always document care planning, including the religious or cultural practices that are deemed important for residents. Care discussions for infection treatment decisions most frequently occurred at the time of medical crisis or after the medical events (e.g., aspiration). Preferences were less frequently discussed during the advance care plan meetings, and least likely elicited upon nursing home admission.

What this paper adds

In general, preferences for infection management were almost always elicited, indicating a positive shift in nursing home care practices, away from a paternalistic to a more patient-centered and shared decision-making approach. However, there were important variations in terms of timing of when such preferences are elicited. Care discussions for infection treatment decisions most frequently occurred at the time of medical crisis or after the medical events. Preferences were less frequently discussed during the advance care plan meetings, and least likely elicited upon nursing home admission.

The variations in the timing of care discussion showed a gap in palliative care practice for a few important reasons. First, the timing of end of life care discussions is closely associated with the level of aggressiveness in the care options one elects. Previous studies show that when the care wishes are elicited in the face of medical crisis, there is an increased chance of electing highly aggressive, and burdensome care options.(73–75) Research suggests that hurried discussions around urgent medical needs bring added pressure to make prompt decisions, failing to allow dying patients to autonomously reflect on his or her care options and preferences.(76) Consequently, it is difficult to identify whether the elicited treatment decisions truly reflect the patient’s core values and desires for the care journey. Furthermore, those who complete advance directives within just a few weeks from their deaths (as opposed to years before) show higher rates of opting for the most aggressive interventions.(75)

Second, as the number of older people grow, so will the occurrence of infections. Lack of U.S. standards that encourage care providers to initiate end of life care discussions could be a reason why such conversations do not occur early on. There is an urgent need to implement a system where infection-related care options are routinely elicited, and frequently revisited by care providers. A federally mandated repeated assessment of one’s end of life care preferences could act as a catalyst for a change.

In the vignette-based palliative care and infection management processes, more than half of our nursing home samples responded that do not administer antibiotics order will not be in place in the care of terminally ill patients. This suggests ample room for further improvement in the types of medical scenarios being discussed during end of life care discussions. In advance care planning, it is important to elicit patient preferences for both what to do and what not to do. That is, the care providers must be able to elicit specific treatments preferences to deliver or to withhold treatment interventions based on the patient’s or patient’s proxy expressed wishes. Medical decisions regarding treatment should align with the treatment’s intended goal as expressed by the patient’s preferences and values.(77) This critical, and yet sometimes missing component of end of life care planning can lead to receipt of highly aggressive and burdensome interventions performed by default.

The pattern of antibiotic usage, and antibiotic prescribing processes are fundamentally different in nursing homes than that of hospitals or clinics.(12, 78) That is, the decision to prescribe and forgo treatment with antibiotics in nursing homes are often made off-site,(79, 80) heavily influenced by nursing staff,(81, 82) and made with limited laboratory evaluation.(83) While antibiotic stewardship is regarded as a highly effective approach in reducing antibiotics misuse,(35, 84, 85) in-depth knowledge on how to facilitate antibiotic stewardship in nursing home continues to remain a high priority. Previous studies show that drivers of nursing home antibiotics usage are the nursing staff and organizational commitment.(38, 78, 81, 86, 87) Increased efforts to provide adequate trainings and educational opportunities for nursing staff can cultivate positive change in end of life care.

Limitations

There are limitations to this study. First, our survey was based on self-reported data from Directors of Nursing, which may have introduced social desirability bias and provided responses different from those of other facility staff. However, previous research has shown that the Director of Nursing is a key informant and the best person to provide an accurate account of a facility's end of life care.(88) Secondly, there were differences in survey respondents and non-respondents on certain characteristics.(72) To account for these differences and improve generalizability in the U.S., we developed population weights. Lastly, with limited literature available on the integration of palliative care and infection management at end of life to date, we were unable to compare our findings with other research. However, we do evaluate our findings based on the broader context of palliative care and infection management.

Conclusions

Providing high-quality palliative care to long-term nursing homes residents at the end of life is important to improve the quality of life of these residents. We found wide variation in practices and suboptimal care being reported across a study of nursing homes in the U.S. Educating nursing home staff as well as the public on the importance of appropriate antibiotic usage and infection management into the provision of palliative care at the end of life is needed.

What is already known about the topic

• Approximately 2 million infections occur in nursing home settings annually and these infections have been associated with high rates of morbidity, mortality and higher healthcare-related costs.

• Infection management at end of life is a complex process, which requires an individualized approach.

• Integration of palliative care and infection management can help reduce burdensome treatments and improve quality of care for nursing homes residents at the end of life

What this paper adds?

• In a representative sample of US nursing homes, we found suboptimal palliative care and infection management practices at end of life with preferences for infection management to be more often elicited after an event then on admission.

• In the event of aspiration pneumonia, about 2/3 of nursing homes would be somewhat to very likely to send the terminally ill nursing home resident to the hospital.

• In suspected urinary tract infection at the end of life about 2/3 of nursing homes would catheterize the resident to obtain a urine specimen and begin treating with antibiotics.

Implications for practice, theory or policy

• A system where nursing home residents’ preferences for infection managements are routinely elicited, and frequently revisited by nursing home care providers is urgently needed.

• Nursing home residents’ preferences for end of life care interventions to be delivered, as well as withheld is an important part of advance care planning at end of life.

• Adequate training and educational opportunities to empower nursing home staff in appropriate use of antibiotics at end of life can cultivate positive changes in how we deliver care to frail nursing home residents