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Palliative care: Nursing home

Palliative care: Nursing home
Authors:
Gary S Winzelberg, MD, MPH
Laura C Hanson, MD, MPH
Section Editors:
Maria J Silveira, MD, MA, MPH
Christine Ritchie, MD, MSPH
Kenneth E Schmader, MD
Deputy Editor:
Jane Givens, MD, MSCE
Literature review current through: Dec 2022. | This topic last updated: Jun 14, 2022.

INTRODUCTION — Caring for nursing home patients presents many medical and health system challenges. Most long-term care residents are over age 65 and/or have multiple chronic health conditions affecting their cognitive and physical functioning. While some individuals in nursing homes return home after receiving therapy services, most will remain in a long-term care facility until their deaths.

This topic discusses the palliative care needs of individuals in long-term care settings and initiatives to improve nursing homes' palliative and end-of-life care services. While data specific to assisted living will be included, virtually all studies and programs have been conducted in nursing homes and this topic will therefore be most relevant to the nursing home population.

Other issues related to both palliative care and the general care of patients in nursing homes are discussed separately:

(See "Medical care in skilled nursing facilities (SNFs) in the United States".)

(See "Principles of infection control in long-term care facilities".)

(See "Geriatric rehabilitation interventions".)

(See "Management of neuropsychiatric symptoms of dementia".)

(See "Multiple chronic conditions".)

(See "Benefits, services, and models of subspecialty palliative care".)

(See "Care of patients with advanced dementia".)

SCOPE OF THE PROBLEM — There is a growing appreciation of long-term care residents’ needs for palliative care services, especially for those with advanced, incurable, and/or chronic illnesses. These needs include symptom management, care of the dying resident, support for family and other caregivers, assistance with decision-making regarding diagnostic evaluations, and plans for if an acute illness were to happen (ie, wishes regarding transfer to an acute care facility).

In a national survey of bereaved family caregivers of nursing home residents, the following results were reported [1]:

Between 32 percent and 24 percent of their loved ones that had experienced either pain or dyspnea, respectively, did not receive enough help.

Almost 60 percent reported receiving inadequate emotional support during their loved ones' terminal illnesses.

Only 42 percent rated their loved one's quality of life in the nursing home as excellent, which was the lowest rating of all health care settings. By contrast, 71 percent gave an excellent rating to care delivered at home with hospice services.

The use of potentially burdensome interventions among patients at the end of life varies geographically:

In a cross-sectional study of 1384 deceased residents from 322 nursing homes in six European countries (Belgium, England, Finland, Italy, The Netherlands, and Poland), the use of potentially inappropriate treatments in the last week of life (enteral or parenteral nutrition, artificial fluids, resuscitation, artificial ventilation, blood transfusion, chemotherapy/radiotherapy, dialysis, surgery, antibiotics, statins, antidiabetics, new oral anticoagulants) differed between countries [2]. For example, the use of at least one potentially inappropriate treatment in the last week of life ranged from 19.9 percent in Belgium to 68.2 percent in Poland. Overall, the most commonly used treatments were antibiotics, artificial nutrition and hydration, and diabetic medications.

PATIENT CHARACTERISTICS — Most nursing home residents are older adults with significant physical and cognitive impairments. From 2017 to 2018, approximately one-third of the nursing home population within the United States was over age 85, two-thirds were women, 15 percent were Black persons, and 6 percent were Hispanic persons. Over 85 percent of nursing home residents needed assistance in bathing, dressing, toileting, and transferring, and one-half received nine or more routine medications [3].

Many nursing home residents have one or more chronic conditions that can limit their life expectancy and/or cause symptoms that add to their symptom burden. Common chronic conditions among nursing residents include Alzheimer disease and other dementias (49 percent), heart disease (20 percent), hypertension (77 percent), diabetes (35 percent), and arthritis (28 percent) [3].

The impact of dementia — Estimates of the prevalence of Alzheimer disease and other dementias among nursing home residents in the United States range from 47.8 to 64 percent [4,5].

Caring for residents with dementia is challenging for many reasons:

Dementia is an incurable and progressive condition, although this may not be initially recognized by family or other caregivers and nursing home staff.

Patients may be unable to fully report symptoms, and thus surrogate decision-makers are needed.

Patients frequently experience pneumonia, febrile episodes, and eating problems, particularly as the dementia becomes more advanced [6].

Many individuals with dementia experience behavioral changes that may be challenging for long-term care staff to address, including resistance to care, emotional or physical restlessness, and wandering. These behaviors may occur independently or develop as the manifestation of an underlying symptom or medical condition such as pain, constipation, or infection. Management strategies for these behaviors are discussed separately. (See "Management of neuropsychiatric symptoms of dementia".)

IMPORTANCE OF ESTIMATING PROGNOSIS — Nursing home residents have multiple physical, cognitive, and functional comorbidities. It is important that health professionals communicate with patients and their families or other loved ones about the likely trajectory of illness and that they attempt to estimate residents' prognosis. This information is necessary for decision-making regarding advance directives and to determine whether a resident meets hospice eligibility criteria. Advance directives and hospice are discussed elsewhere. (See "Advance care planning and advance directives" and "Palliative care and hospice outside of the United States" and "Hospice: Philosophy of care and appropriate utilization in the United States".)

Prognostic indices have been published to estimate nursing home residents' six-month all-cause mortality risk [7] and the one-year mortality risk of both newly admitted residents and residents who have lived in a nursing home for more than one year [8]. These indices may be accessed using a website developed to provide evidence-based information on estimating older adults' prognosis in multiple care settings. Communication regarding prognosis in palliative care is discussed elsewhere. (See "Communication of prognosis in palliative care".)

LONGITUDINAL INTAKE OF THE NURSING HOME PATIENT — For patients in nursing homes, structured interviews done at the initial intake and then at periodic intervals are necessary to ensure symptoms are being addressed and care goals are being met. These interviews also provide an opportunity to discuss hospice options for patients who are experiencing significant decline and/or are approaching death.

New nursing home patients — For all patients newly admitted to a nursing home, a comprehensive evaluation is required. This should include the following:

Review of underlying acute and chronic medical diagnoses as well as baseline functional status.

Symptom assessment, with particular focus on cognition, pain, and constipation. (See 'Specific symptoms' below.)

Medication review, including questions to the patient (and/or their caregivers) regarding their effectiveness and side effects – This is important as polypharmacy is common among nursing home patient. (See 'Polypharmacy' below and "Deprescribing".)

Review of existing advance care planning documents – For patients who have not completed advance care planning, assistance should be offered in completing this paperwork. For those patients who have not designated a surrogate decision-maker, clinicians should directly inquire about whom they would want to help make heath care decisions, which can help aide in the selection of a health care proxy. (See 'Decision-making' below.)

Discuss the patient’s care goals – Recognizing the complexity of residents admitted to long-term care facilities, health professionals should seek to understand residents' primary goals and express a commitment to promoting consistency between residents’ care in the facility and their treatment preferences. Goals may include life prolongation independent of the resident's baseline function, promotion of functional and cognitive rehabilitation, and/or enhancing the resident's comfort. If multiple goals are identified, patients and families/other surrogate decision-makers should be counselled about prioritization of the stated goals.

For example, while all residents should have symptoms assessed and treated as part of their care plan, some residents' may hold an exclusive focus on comfort without seeking to extend life or achieve functional gains as their highest priority goal. Estimating the resident's prognosis may assist in communication about care goals. (See 'Goals of care communication' below and 'Patient characteristics' above.)

Established nursing home patients — Periodic assessments are required of all patients in nursing homes. This is particularly important for patients with progressively deteriorating illnesses, including advanced dementia and advanced malignancies. The evaluations should include:

Periodic symptom assessments – This may require sources other than the patient and their caregiver, including that of long-term care staff and family caregivers. This is particularly true for individuals with dementia.

Semiannual review of medications – If long-term care residents experience functional and cognitive decline, medications that were beneficial may no longer be indicated and their continued use may pose side effect risks. Also, consider discontinuing medications based on the resident's care goals, prognosis, and other difficulties such as swallowing problems and perceived pill burden.

Annual review of advance care directives – Communicating about these directives helps ensure that care plans remain appropriate and enable changes to be made in response to changes in residents' condition and care goals.

Assess condition and any anticipated changes in residents' condition – This communication relates to discussion of residents' care goals and advance directives and may inform decisions regarding tube feeding, hospitalization, and utilization of hospice services. For residents with dementia, these discussions may include when families or other loved ones may expect to observe behavioral changes, functional decline, feeding problems, and increased risk of infections. Consider estimating the resident's prognosis to help inform this communication. (See 'Patient characteristics' above.)

ISSUES IN THE CARE OF THE NURSING HOME PATIENT

Specific symptoms

Pain — All United States nursing homes that receive federal funding must periodically report the percentage of residents reporting moderate to severe pain using the Minimum Data Set. For patients in the nursing home, pain may be related to osteoarthritis, neuropathy, cancer, or other chronic illness. As with patients receiving palliative care in other settings, it is important that attention be made to ensure adequate pain assessment and management. Assessment should include consideration of pain onset, location, duration, quality, severity, and both alleviating and exacerbating factors. A review of past management strategies and their effectiveness should also be completed.

Untreated pain is a particular concern for patients in palliative care, and it appears to be an important issue for nursing home residents:

In one national study using the Minimum Data Set, more than one-third of nursing home residents experienced either persistent (19.5 percent) or intermittent pain (19.1 percent) during a three-month period [9]. Another study demonstrated that 59 percent of residents with moderately severe dementia were bothered by pain, with 40 percent having activities limited by pain [10]. Among all residents with persistent pain, 6.4 percent of residents had their pain untreated and 32 percent had undertreated pain, defined as not receiving any scheduled analgesics. Characteristics associated with untreated or potentially undertreated pain included being older (age >85 versus 65 to 74), being from a racial and ethnic underrepresented group, and having cognitive impairment. Another national study reported that 16.7 percent of nursing home residents with persistent pain did not receive prescription analgesics, with older residents, those with cognitive impairment, and residents from Black or Asian groups less likely to be prescribed analgesics [11].

Another report suggested that more than 65 percent of newly admitted Medicare-eligible nursing home residents with cancer had pain, 28 percent daily [12]. Adequate analgesia was significantly negatively associated with age 85 and older (adjusted odds ratio [OR] 0.67, 95% CI 0.55-0.81), cognitive impairment (adjusted OR 0.71, 95% CI 0.61-0.82), the presence of a feeding tube (adjusted OR 0.77, 95% CI 0.60-0.99), and use of restraints (adjusted OR 0.50, 95% CI 0.31-0.82).

Assessing pain in patients with impaired cognitive function — Prior studies suggest that nursing home residents with dementia are less likely to receive pain medications than residents with normal cognitive function [13]. Strategies for assessing pain in patients with severe cognitive impairment include [14]:

Grimacing or guarding with movement

Agitation that is unrelated to movement

New or worsening sleep disturbance

Loss of appetite

For health care workers in the nursing home, the presence of dementia can result in challenges to pain assessment. Persons living with dementia may progressively lose the ability to self-report pain, but they may express pain in the form of distressed behaviors such as physical restlessness, resistance to dressing, bathing, or other personal care, or greater passivity and social withdrawal [15]. In addition to watching for behavioral cues that might suggest a patient is in pain, two nonverbal pain behavior scales have been tested in long-term care facilities, validated, and are easy to use:

The Checklist for Non-verbal Pain Indicators (CNPI) involves observations of six behaviors with movement and at rest that can be associated with pain, including facial grimaces. The checklist can be used to alert staff to the presence of pain.

The Pain Assessment in Advanced Dementia (PAINAD) tool contains five items each scored 0 to 2 to yield a total score of 0 to 10 to rate pain severity (table 1).

Either the CNPI or PAINAD may be used to assess discomfort in residents with cognitive impairment and provide health professionals with a tool to perform these assessments. Approaches to pain management are discussed separately:

(See "Ethical considerations in effective pain management at the end of life".)

(See "Pain control in the critically ill adult patient".)

(See "Cancer pain management with opioids: Optimizing analgesia".)

(See "Cancer pain management: General principles and risk management for patients receiving opioids".)

(See "Cancer pain management: Role of adjuvant analgesics (coanalgesics)".)

(See "Management of acute pain in the patient chronically using opioids for non-cancer pain".)

(See "Cancer pain management: Interventional therapies".)

(See "Approach to the management of chronic non-cancer pain in adults".)

Treating pain in medically complex nursing home patients — Pain management includes consideration of nonmedication strategies (eg, massage, positioning, and music), nonopioid medications including acetaminophen, antiinflammatory drugs, neuropathic pain medications, and topical gels and patches. While there can be concern that use of opioid medications in older adults may be associated with delirium and other undesirable side effects, chronologic age or the presence of dementia alone should not be a contradiction to opioid use among residents in long-term care settings. Residents with moderate to severe pain and/or discomfort that does not respond to other therapies should be treated with opioids, though the geriatrics prescribing principle of “start low and go slow” may be used. A stepwise approach using nonopioids followed by opioids and adjuvant analgesics has been shown to be effective for nursing home residents with dementia and pain [16]. However, older adults may require and tolerate the same opioid dose as a younger patient. Residents' renal and hepatic function should also be considered when choosing and increasing opioid doses. Interventional approaches such as nerve blocks and radiation treatments for cancer-related pain may also be pursued.

In one national study, approximately one in seven nursing home residents received an opioid for >90 days, and these residents were also more likely to receive nonopioid pain medications and nonpharmacologic interventions than residents who were not treated with opioids [17]. Most opioids that are initially prescribed for nursing home residents are short-acting formulations in accordance with Centers for Disease Control and Prevention (CDC) guidelines [18], although one study demonstrated that 36.3 percent of nursing home residents initially prescribed a fentanyl patch had not previously been treated with opioid medications and 92 percent did not have persistent pain [19]. Decisions related to opioid prescribing in nursing home residents should be individualized, with consideration of benefits and risks, use of short-acting agents for intermittent pain, and ongoing monitoring for appropriateness of dose reductions and opioid discontinuation if pain improves.

Non-pain symptoms — There are limited data on the symptom experiences of patients in palliative care who are living in long-term care facilities. A summary of this literature is given below. However, a more extensive discussion of the medical care of patients living in nursing homes is covered separately. (See "Overview of comprehensive patient assessment in palliative care" and "Overview of managing common non-pain symptoms in palliative care" and "Medical care in skilled nursing facilities (SNFs) in the United States".)

Eating problems – The incidence of symptoms affecting intake is over 70 percent [6,20]. These symptoms can include dental problems (lack of teeth, ill-fitting dentures, and gum disease), lack of appetite, regurgitation, dysphagia, and xerostomia associated with medications and conditions affecting salivary gland function. Residents with dementia and/or cerebrovascular accidents can develop oral apraxia, including having difficulty with utensil use and other atypical behaviors (eg, pocketing food).

Dyspnea – 30 percent of nursing home residents with moderately severe dementia experience breathing problems [10] Approximately 50 percent of patients dying in nursing homes experience dyspnea in assessment periods ranging from the last week to the final three months of life. Previous studies suggest a significantly lower prevalence of dyspnea (approximately 10 percent) among individuals with dementia, although the difference may be associated in part to the challenges of assessment related to cognitive impairment [21,22].

Constipation – Approximately 40 percent of nursing home residents experienced constipation in a Swedish study [23], and up to one-third of residents have constipation at the end of life [21].

Nausea – Less than 10 percent of dying residents experience nausea [21,24].

Pressure ulcers – The prevalence of pressure ulcers among nursing homes ranges internationally from 3.4 to 32.4 percent [25]. Pressure ulcers can result in more complicated medical problems, including pain, a superimposed cellulitis, osteomyelitis, and sepsis. Among this population, stage II ulcers (table 2) are the most common [26]. The development of pressure ulcers among nursing home residents is a quality of care measure by the Centers for Medicare & Medicaid Services (CMS). Therefore, nursing homes are obligated to report these data, which are publicly available for each facility.

Delirium – Among patients admitted to a nursing home after hospitalization for an acute illness, 4.3 percent were assessed to have delirium in one study based on the Minimum Data Set [27,28]. For patients with dementia, delirium can complicate any acute change in condition, including injuries and infections. At the end of life, the cumulative incidence of delirium is as high as 85 percent [29].

Weight loss – Weight loss in this context is likely multifactorial due to difficulties with oral intake, gastrointestinal distress, and deconditioning. However, while residents with weight loss may be asymptomatic, especially if expected as part of their dementia progression, nutritional decline can be distressing to family and other loved ones, and staff caregivers. In nursing home residents with moderately severe dementia, 47 percent experience unintentional weight loss [10].

Cleanliness — As residents' functional status declines and death approaches, the ability to keep the patient clean becomes a more prevalent issue for the staff. In one study, staff reported that more than 90 percent of nursing home and 70 percent of assisting living residents had problems with cleanliness, including issues related to skin and oral care, as well as care required to manage incontinence [20]. Residents with dementia may verbally and physically resist efforts to assist them with bathing and mouth care, posing risks to nursing assistants. Care approaches to facilitate bathing and oral care “without a battle” have been developed and successfully implemented in nursing homes [30,31] with outcomes including decrease in aggressive behaviors.

Polypharmacy — While polypharmacy itself may not be considered a symptom, the volume of medications patients take on a daily or routine basis may adversely affect their appetite and contribute to nausea and constipation. A careful medication review should occur at the time of admission to a long-term care facility, with any significant change in health status, and as individuals are identified as entering an advanced or life-limiting stage of any incurable illness. In particular, over one-half of nursing home residents with advanced dementia receive medications of questionable benefit, including cholinesterase inhibitors, memantine, and lipid-lowering agents [32]. Discontinuing these medications does not compromise outcomes and may be associated with better quality of life. (See "Deprescribing".)

In one randomized trial conducted in patients with an estimated life expectancy of 1 to 12 months (22 percent had dementia), there was no increase in mortality 60 days after statin therapy was discontinued, and these patients experienced better quality of life [33]. (See "Palliative care: The last hours and days of life", section on 'Eliminating non-essential medications'.)

COMMUNICATION — Communication among nursing home residents, their caregivers, clinicians, and nursing home staff is critical to meeting residents' palliative care needs. However, effective communication can be hindered by several factors, which can also impede the formation of a trusting relationship. These include:

Lack of visitation by health care providers – Many physicians, nurse practitioners, and physician assistants responsible for the care of nursing home patients and for writing orders make infrequent visits to the institution. In one national survey, clinicians with a nursing home practice spent less than two hours a week providing care to residents [34]. Infrequent nursing home visits can negatively impact the clinician's ability to develop collaborative care plans with nursing home staff and with the residents and their families or other loved ones.

Lack of visitation by family or other caregivers – Caregivers may spend limited time in nursing homes, especially if they live at a distance or have other responsibilities. During the coronavirus disease 2019 (COVID-19) pandemic, visitation was restricted at times, creating additional major barriers to family involvement.

High job turnover of clinical staff – Nursing home staff tend to suffer from a high rate of job turnover, which in some facilities is greater than 100 percent annually. This is reflected in issues between staff and caregivers. In one study of residents who had died in long-term care, their family caregivers and facility staff differed on the residents' prognosis and symptom burden [35].

Lack of education and training in palliative care – Staff report also receiving insufficient education and training on providing palliative care [36,37].

In context of these factors, patients and their caregivers want contact with their clinicians. This was demonstrated in a national survey of bereaved caregivers whose family members died while in a nursing home [38]. Almost one-third recalled wanting contact with their family member's clinician during the final phase of that person's illness, but they did not receive it [1]. In another similarly designed study, approximately one-half of bereaved caregivers felt they were not told what to expect during the dying process nor did they recall being a part of any conversation with the clinician about the residents' treatment preferences [38]. For patients with advanced dementia, families identify lack of communication with clinicians as a source of stress [39].

Some data indicate that increased clinician presence can improve familial certainty that the treatments being performed for their loved ones are appropriate [40]. Since involvement of nurse practitioners in caring for nursing home residents with dementia has been associated with high family satisfaction [41], expanded collaborations between clinicians and nurse practitioners may enhance communication with nursing home staff, residents, and their families.

DECISION-MAKING — Patients in nursing homes should be included in any and all decision-making as long as they have decisional capacity. An approach to the assessment of decision-making capacity is summarized in the table (table 3) and covered in detail elsewhere. (See "Assessment of decision-making capacity in adults", section on 'How to assess capacity'.)

For those without decisional capacity (including those with advanced dementia), these decisions fall on surrogate decision makers in collaboration with the responsible clinician. Among the most frequent decisions faced by the surrogate decision-makers for residents with dementia involve establishment of goals of care, issues related to feeding, and the treatment of medical issues, including infections and pain [42]. The topic of surrogate decision-makers and advance care planning is covered separately. (See "Advance care planning and advance directives".)

Goals of care communication — For long-term care residents, it may be useful to prioritize their most important goals as those that prolong life, promote function, or maximize comfort. Other goals that residents may identify include achieving life goals, such as attending an important family event, completing unfinished business, achieving peace with God, and providing support for their families and other caregivers [43].

Structuring discussion around the primary goal of care may not only improve communication but also aid in subsequent decision making for long-term care residents. At least one study showed that prioritization among these goals among caregivers was feasible [44]. For residents and families/other surrogate decision-makers able to articulate a primary or exclusive care goal, the clinician may then translate this goal into specific treatment recommendations that can be accepted or rejected. This communication approach may lessen the burdens of decision-making experienced by residents and families/other decision-makers.

Use of videos has been proposed as a mechanism to promote resident and family/other caregiver understanding of goals of care and decision-making options:

In a randomized controlled trial, older adults who watched a six-minute goals of care video on admission to a nursing home were more likely to identify comfort as their primary goal compared with residents who received a verbal narrative [45].

Another study demonstrated that older adults exposed to a goals of care video related to the care of individuals with advanced dementia also chose comfort as their preferred goal more often than for individuals exposed to a verbal care goals explanation [46].

In another randomized trial, a 20-minute goals of care video decision aid about treatment options in advanced dementia, designed to support discussions during the nursing home care planning process, was effective in enhancing agreement on goals, increased the palliative care content of treatment plans, and reduced hospital transfers [47].

Some families or other surrogate decision-makers may identify different goals altogether or express multiple goals as having equal importance. However, communicating about goals may be easier than being asked to make specific treatment decisions that may find stressful and burdensome [39]. Strategies for discussing goals of care are discussed in detail elsewhere. (See "Discussing goals of care".)

Decisions regarding nutrition and hydration — The nutritional status and the occurrence of weight loss are topics of concern among nursing home residents. Weight loss may threaten residents' self-identity. In addition, both residents and their families or other loved ones may associate nutrition with life and its absence with starvation. Centers for Medicare & Medicaid Services (CMS) reports the percentage of residents who lose too much weight (defined as >5 percent loss of body weight in one month) as a quality measure. A discussion on withdrawal of nutrition and hydration for patients at the end of life is covered separately. (See "Stopping nutrition and hydration at the end of life".)

Role of artificial nutrition and hydration — As with any treatment decision, communication regarding artificial nutrition and hydration for long-term care residents should focus on the risks and benefits of the treatment and whether the decision supports the resident’s care goals. Discussions regarding use of a gastrostomy tube for artificial nutrition and hydration occur commonly in long-term care. Other decisions include use of fluids given intravenously or subcutaneously (hypodermoclysis). Total parenteral nutrition is rarely used in long-term care facilities, mostly due to logistical and financial barriers.

For some residents, gastrostomy tube use is consistent with their care goals and has an acceptable risk/benefit consideration. These include individuals in whom artificial nutrition and hydration permits disease-directed treatment (eg, patients with a head and neck or newly diagnosed abdominal or pelvic malignancy) and others in whom recovery of swallowing function is an anticipated outcome (eg, patients recovering from a cerebrovascular accident). For other residents, use of a gastrostomy tube supports the goal of life prolongation and/or promoting function, including nursing home residents in a persistent vegetative or those with a progressive neurologic conditions (eg, amyotrophic lateral sclerosis).

Beyond these defined subsets of nursing home residents, the vast majority of decisions about gastrotomy tubes relate to patients with dementia. Among patients with advanced dementia in nursing homes, approximately one-third have feeding tubes [48], although there are few data to suggest it improves survival [6] or decreases the incidence of other outcomes such as pneumonia, weight loss, and pressure ulcers [49-51]. Potential burdens associated with gastrostomy tube use include wound infections, the use of restraints to prevent residents from removing the tube, emergency room visits and hospitalizations to replace tubes that are removed or displaced and substituting the pleasure residents may have from oral intake with tube feeding and hydration. In addition, the data suggest there are significant variations in the use of feeding tubes across the United States. In one study of almost 190,000 patients, 34 percent of patients with advanced cognitive impairment had a feeding tube [48,52]. Compared with those without a feeding tube, these patients were more likely to be of younger age, non-White race, male, or divorced, had no advance directives, and had experienced a recent decline in functional status.

Beyond these issues, many family caregivers report either no or minimal communication with clinicians related to the decision for their loved one to receive a feeding tube [53]. This represents a significant opportunity to improve communication and decision-making. Despite these findings, there appears to be organizationally related factors associated with a greater use of feeding tubes in these patients, including greater use in for-profit, urban-located, and larger (>100 bed) nursing homes [48,52].

A discussion of feeding in patients with advanced dementia is provided elsewhere. (See "Care of patients with advanced dementia", section on 'Oral versus tube feeding'.)

Approaching discussions about artificial intake — Discussions related to artificial nutrition and/or hydration in the nursing home for patients undergoing palliative care should include the following information:

The lack of a known benefit from artificial nutrition and hydration in patients approaching the end of life, including responding to issues related to hydration and starvation, which may be raised by the patient or their family/loved ones.

The risks associated with placement and maintenance of the feeding tube itself (including infections, aspiration, and potentially, the requirement for restraints if patients are physically unstable or violent) [54].

Alternatives to tube feeds or other artificial nutrition systems that are more aligned with their loved ones’ condition and care goals. For patients who are able to swallow, one systematic review supported the use of high-calorie supplements but found low-quality evidence to support the use of appetite stimulants, assisted feeding, and modified foods [55].

One approach to improve feeding tube decisions has been to use decision aids with family or other informal caregivers. One randomized controlled trial demonstrated that family caregivers who received a decision aid felt less conflicted and were more likely to discuss feeding options with a health care provider [55]. In another study, surrogate decision-makers who used a tube feeding decision aid had less decisional conflict and increased knowledge about the decision that was ultimately chosen [56].

A discussion of ending nutrition and hydration at the end of life is provided elsewhere. (See "Stopping nutrition and hydration at the end of life".)

Caring for infectious complications — Long-term care residents frequently have febrile episodes or can develop infections without fever, including pneumonia and urinary tract infections. Deciding whether, where, and how to treat these infections requires a thoughtful discussion among clinicians, residents, and family or other informal caregivers. Provided that the nursing home is equipped to treat infections (ie, can provide antibiotics with a proficient nursing home staff), at least one study showed that infections can be successfully treated without acute care hospitalization [57]. In that review, patients with pneumonia (with a respiratory rate <40) were effectively treated in the nursing home, which was associated with lower costs and improved morbidity and mortality rates compared with acute care hospitalization. After consideration of their care goals as well as prognosis, residents and their families/decision-makers may decide with their clinicians to seek hospital evaluation and treatment for acute infections, initially provide management in the nursing home while transferring to the hospital if a resident’s condition worsens, or focus care exclusively on the resident’s symptoms without attempting to diagnose the underlying cause of a febrile episode.

Independent of their primary care goal, patients with a systemic infection in the context of advanced dementia have a poor prognosis. While families/other decision-makers and clinicians may consider infections to be reversible, the development of serious infections among patients advanced dementia usually indicates that death is approaching, regardless of whether antibiotics are administered. In one study of patients diagnosed with pneumonia, the 10-day and six-month mortality rates were 50 percent and 74 percent, respectively [58]. Another study concluded that antimicrobial treatment of urinary tract infections in nursing home residents with advanced dementia did not improve survival [59]. While hydration and antibiotic use may prolong short-term survival, this benefit may only be measured in days among most residents with advanced dementia [58] and may also increase discomfort [60,61].

Therefore, for residents with comfort as their primary goal who subsequently develop a systemic infection (eg, pneumonia), care should focus on managing symptoms rather than aggressive treatment of the infection. Their families/other decision-makers should be informed that use of antibiotics for managing infections in residents with advanced dementia will likely not promote comfort and may prolong the dying process.

INITIATIVES TO IMPROVE PALLIATIVE CARE IN LONG-TERM CARE SETTINGS — There is limited availability of palliative care programs in United States nursing homes and significant underutilization in those facilities with programs [62]. There are few data to inform the implementation of interventions that may improve the quality of palliative care in long-term care settings [63], but chief among them is ensuring greater access to hospice services [64-66]. In the United States, this has already occurred, with hospice enrollment increasing from 28 to 40 percent among nursing home residents between 2004 and 2009 [67]. A similar increase in hospice enrollment has been noted among patients with dementia [68].

The benefit of hospice services is illustrated in the following examples:

In a review of 786,328 Medicare Fee-for Service beneficiaries older than age 67 who died while they were nursing home residents in 2004 and 2009, the increase in hospice use from 28 to 40 percent over this five-year period was associated with significant decreases in rates of hospital transfers, feeding tube use, and a lower rate of intensive care unit use in the 30 days before death [67]. However, the expansion of hospice use was also associated with a mean net increase in Medicare expenditures, reflecting greater additional spending on hospice care after adjusting for decreased spending on hospital and other care.

Others note that Medicare spending on hospice care for nursing home patients grew 70 percent between 2005 and 2009 [69].

In another study of all nursing home residents in one state who received hospice care prior to death, their families believed that hospice improved their loved ones’ symptom management and attention to their emotional needs [70].

For residents with advanced dementia in nursing homes, those receiving hospice services were more likely to receive scheduled opioid medications for pain and symptomatic treatments for dyspnea, and overall they had fewer unmet needs at the end of life compared with residents dying without hospice care [71].

Unfortunately, there are multiple barriers to hospice use in long-term care settings including:

Imprecise ability of clinicians to render prognosis in residents with dementia and other terminal, non-cancer diagnoses.

Negative associations between hospice and death held by residents, families, and long-term care staff.

Lack of coverage for the room and board costs in long-term care facilities – While there is a Medicare benefit that covers skilled nursing facility admissions, it is specific for rehabilitative services associated with acute care hospitalizations and ends when the patient’s rehabilitation progress plateaus or if the patient experiences an acute decline that prevents them from receiving therapy services.

However, almost one-third of older adults reportedly used this benefit during their last six months life [72], demonstrating that many will not achieve their rehabilitation goals and would likely benefit from receiving palliative care and hospice services [73].

Unplanned transfer to an acute care facility – Patients who are receiving hospice services may experience a decline or plateau, which may prompt a transfer to the hospital for stabilization and/or other interventions.

Transfer to home – Some patients may request a transfer to home to die; however, others may attempt to return home to avoid the substantial daily nursing home costs.

Although hospice services represent a potential major source of palliative care in nursing homes, some individuals in nursing home hospice have enrollments lasting days to few weeks given these many barriers [67,74,75]. To expand access to palliative care, alternative models, such as palliative care consultations by external providers with palliative care expertise (specialty palliative care consultations), are being explored [76]. (See "Benefits, services, and models of subspecialty palliative care", section on 'Nursing home mode of palliative care'.)

In addition to ensuring access to hospice, all patients should be encouraged to complete Advance Care Planning. For long-term care residents, one example is the Physician Orders for Life-Sustaining Treatment (POLST) document, which provides a portable, valid order set for patients that can be used across the continuity of possible care settings, including the home, the ambulance, and all institutional settings [77]. Initially developed and implemented in Oregon, this order enables health care professionals and patients or their surrogate decision-makers to designate a primary care goal and make specific decisions regarding cardiopulmonary resuscitation, antibiotics, tube feeding, and artificial hydration. The use of such an advance care planning mechanism helps ensure respect for residents’ treatment preferences at the end of life [78-80], although even in states that have a mature POLST program, there is significant variation in POLST completion rates among nursing homes [81]. (See "Advance care planning and advance directives".)

SUMMARY AND RECOMMENDATIONS

Caring for patients in nursing homes presents many medical and health system challenges. Most long-term care residents are over age 65 and/or have multiple chronic health conditions affecting their cognitive and physical functioning. (See 'Introduction' above.)

For patients in nursing homes, structured interviews done at the initial intake and then at periodic intervals are necessary to ensure that symptoms are being addressed and care goals are being met. These interviews also provide an opportunity to discuss hospice options for patients who are experiencing significant decline and/or are approaching death. (See 'Longitudinal intake of the nursing home patient' above.)

Untreated pain is a particular concern for patients in palliative care, and it appears to be a particular issue for nursing home residents, especially those with cancer. (See 'Pain' above.)

As residents’ functional status declines and death approaches, the ability to keep the patient clean becomes a more prevalent issue for the staff. Problems with cleanliness include issues related to skin and oral care as well as care required to manage incontinence. (See 'Cleanliness' above.)

The volume of medications they take on a daily or routine basis may adversely affect their appetite and contribute to nausea and constipation. (See 'Polypharmacy' above.)

Communication among nursing home residents, their family or other caregivers, clinicians, and nursing home staff is critical to meeting residents’ palliative care needs. (See 'Communication' above.)

Patients in nursing homes should be included in any and all decision-making as long as they have decisional capacity. For those without decisional capacity (including those with advanced dementia), these decisions fall on surrogate decision-makers. Among the most frequent decisions faced by the surrogate decision-makers for residents with dementia involve establishment of goals of care, issues related to feeding, and the treatment of medical complications, including infections and pain. (See 'Decision-making' above.)

For long-term care residents, it may be useful to prioritize the most important goals as those that prolong life, promote function, or maximize comfort. Structuring discussion around the primary goal of care may not only improve communication but also aide in subsequent decision-making for long-term care residents. (See 'Goals of care communication' above.)

There are few data to inform the implementation of interventions that may improve the quality of palliative care in long-term care settings, but chief among them is ensuring greater access to hospice services. (See 'Initiatives to improve palliative care in long-term care settings' above.)

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References