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Файл:Ординатура / Хирургия / Библиотека им академика М.И. Перельмана / Книга_2939_Библиотеки_им_академика_М_И_Перельмана
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Integrating Palliative Care into Long-Term
Care
PeterWinn
Introduction
Practitioners in post-acute and long-term care (LTC) are challenged in caring for an
ever-increasing number of persons who face serious and life-limiting illness due to
multiple chronic conditions (multimorbidities) and who reside either at home or in
a LTC setting (i.e., nursing facility, SNF, assisted living or residential care). The
Center to Advance Palliative Care (CAPC) has reported that up to 80% of residents
in nursing facilities could benet from palliative care. As many facilities lack onsite access to a specialist palliative care consultation service, it is essential that
practitioner’s acquire competency to integrate palliative care into daily practice. In
addition, practitioners must acquire skills (cultural competency) to effectively communicate and interact with both patients’ families and health care workers of different cultures and diversity [1]. A well-referenced editorial by Kristler, Sloane, and
Zimmerman [2] stresses that core areas of palliative care that challenge practitioners, patients, and families include: advance care planning (prognostication and
values clarication, through both family-centered and patient-centered decision
making); symptom management; and psychosocial support.
Irrespective of a patient’s non-cancer or cancer prognosis, palliative care can
supplement traditional medical care, such that disease-modifying treatments are not
necessarily abandoned if congruent with patients’ values, preferences, and goals of
care and goals of “life.” Such “total care” must be safe, effective, patient-centered,
timely, efcient, and equitable, all consistent with the six aims of the Institute of
Medicine 2001 report to improve health care in the United States. The overarching
goal of care in nursing facilities is to provide residents with treatment and services
P. Winn (*)
Department of Family and Preventive Medicine, University of Oklahoma, College of
Medicine, Oklahoma City, OK, USA
© The Author(s), under exclusive license to Springer Nature
Switzerland AG 2023
P. Winn et al. (eds.), Post-Acute and Long-Term Care Medicine, Current Clinical
Practice, https://doi.org/10.1007/978-3-031-28628-5_11
197
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P. Winn
to attain and maintain the highest practical physical, mental, and psychosocial wellbeing and functioning despite the resident’s medical condition and normal aging
process. As such all residents in PA and LTC can benet from integration of palliative care into practitioner practice. F-Tags 684, 697, 849, and 744 of the State
Operations Manual provides guidance to State surveyors (as well as practitioners!)
as to the provision of care to all residents, including those approaching end-of-life
or receiving hospice services. This encompasses the recognition and management of
pain, non-pain symptoms, and the behavioral and psychologic symptoms of dementia, all essential to provision of effective and holistic palliative care to residents.
• F-Tag 684, Quality of Care: Relates to Hospice Care, Palliative Care, and the
Terminally ill
• F-Tag 697, Pain Management
• F-Tag 849, Hospice Services
• F-Tag 744, Care of residents with dementia
• F-Tag 757, Unnecessary Drug Use
The provision of palliative care in Post-Acute and Long-Term Care Medicine
aligns with the Centers for Medicare and Medicaid Services (CMS) Quadruple
Aim: to improve the health of patient populations, in this case, the PA and LTC resident population we serve; to enhance patient and patients family experience and
satisfaction; to reduce health care costs (for example by reducing ER transfers from
LTC to the hospital and hospital admissions); and to improve job satisfaction
(among LTC health care workers and providers).
This chapter will focus on the following:
• Principles of palliative care in post-acute and long-term care
• Illness trajectories and prognostication for those who have serious and life-
limiting illness.
• Pain and non-pain symptom management
• Hospice eligibility guidelines
• Palliative care during the last days and weeks of life
Guiding Principles ofPalliative Care
Irrespective of the age of a patient, the clinical setting, place of resident care, or
whether a person is suffering from a serious chronic acute or life-limiting illness,
the core principles of palliative care are to:
• Reduce the symptom burden from pain and other distressful symptoms, to
include the relief of suffering.
• Recognize and address the physical, psycho-emotional, social and spiritual/exis-
tential needs, and dimensions of pain and other symptoms experienced by both
the patient and family.
• Provide medical treatment that is goal-congruent with the wishes, values, prefer-
ences, beliefs, culture, and concerns of the patient and family (advance care planning).
Integrating Palliative Care into Long-Term Care
199
• Promote care that is both interdisciplinary and multidisciplinary.
• Assist the patient, family, facility staff, and practitioners with health care ethical
and legal issues.
Practitioners must be committed to the highest quality (palliative) care that is both
timely and comprehensive. To do so, requires regular clinical assessment, diagnosis,
care planning, interventions, and monitoring the patient’s response to these interventions while recognizing the natural trajectory of the disease. Practitioners must anticipate and prevent/alleviate distressful symptoms and suffering. Care should be
patient-centered and family-focused. All practitioners and health care providers are
challenged on many levels to provide seamless transitions in care between institutional,
ER/hospital, and home care settings. Effective communication skills are essential.
For the patient and family, the primary goals of palliative care include:
• To strive for the highest practical quality of life, despite late stage illness.
• To be in control (autonomy) and to maintain one’s dignity.
• To relieve distressful symptoms and suffering (social, spiritual, existential).
• To alleviate family burden (can be psycho-emotional, nancial, practical).
• And to mend estranged relationships, if possible.
In LTC Medicine, the goals of palliative care are similar whether patients are at
end-of-life on hospice or not. Medical care should be delivered in accordance within
the ethical principles of heath care, its legal framework (State and Federal), the
practitioner’s scope of practice, and provided with cultural sensitivity and competency (see Chapters on “Ethical and Legal Issues in Post-Acute and Long-Term
Care” and “Working with Families and Person-Centered Care”).
Illness Trajectories andPrognostication
Irrespective of a person’s place of residence, currently the leading causes of death in
the United States are heart disease, cancer, stroke, lung disease, Alzheimer’s, inuenza and pneumonia, and kidney disease, in addition to unintentional injuries, diabetes, septicemia, and the COVID-19 pandemic of 2020–2021. These diseases
commonly afict patients/residents in the LTC continuum who can benet from the
integration of effective palliative care into their traditional medical treatment,
whether it be during the early, middle, late, or terminal phase of their illness trajectory.
For persons who reside in nursing facilities, the common causes of death have
been [3, 4]
• 30–60% cardiovascular (includes sudden cardiac death, myocardial infarction,
heart failure, and stroke).
• 1–23% pulmonary (COPD, pneumonia, lung cancer).
• 36% Alzheimer’s disease and other dementia (10% of all dementia deaths occur
in nursing facilities).
• 7–9% cancer.
• 2–3% end stage renal disease.
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P. Winn
As of June 2021, CMS had reported 657,457 total resident COVID-19 conrmed
cases and 133,210 COVID-19 resident deaths in nursing facilities and 586,899 conrmed cases and 1,949 deaths among the staff of nursing facilities.
Generally, Illness trajectories that lead to death manifest in one of four ways [5]:
• A short period of rapid decline before death (usually a few weeks or months)
often seen in cancer.
• Prolonged dwindling over several years. Often seen in those aficted with
dementia or progressive frailty and debility due to neurologic disease such as
Parkinson’s, multiple sclerosis, and Lou Gehrig’s.
• Progressive functional decline over 2–5years with intermittent serious epi-
sodes of acute illness, often associated with multiple ER visits and hospitaliza-
tions, with only partial recovery of functional status after each episode, leading
to eventual death, often seen in advanced cardiac or pulmonary disease.
• An acute catastrophic event leading to death within 7–14days. Often seen
with acute stroke, myocardial infarction, respiratory or renal failure, coma, or
severe gastrointestinal bleeding for which blood transfusion may have been
deferred.
When patients manifest a given trajectory, practitioners should anticipate the
need to “breaking bad news” and take the initiative to engage patients, caregivers,
and family members in “advance care planning” that may eventually transition to
“terminal care planning” as end-of-life and death approaches.
Though it is challenging to prognosticate in the chronically ill, the Flacker
Mortality Score can provide a percentage probability of death in 1year in newly
admitted residents to nursing home aged 65 and older [6] while other patient characteristics (available from the MDS) can also assist in prognostication (e.g., signicant weight loss, swallowing problems, BMI <22, age >88, CHF, shortness of
breath, male sex). Another prognostic tool is the Palliative Prognostic Score that
may predict 30-day survival [7]. Note that the presence of delirium is another signicant prognostic factor.
General Indicators andClinical Parameters ofSerious Illness
General indicators and clinical parameters that can forewarn a practitioner that a
patient may be at risk of death within the next 6–12months include the following:
• Repeated ER visits and frequent hospitalizations.
• Recurrent life-threatening infections such as pneumonia, UTI, and sepsis.
• Progressive decline in residential functional status as determined by the Palliative
Performance Score [8] of less than 50–70%, (see Table1) or increasing depen-
dency in 2 or more Basic Activities of Daily Living (i.e., BADLs).
Integrating Palliative Care into Long-Term Care
Table 1 Symptom prevalence in advanced illness
Symptom Cancer Non-cancer Cancer, AIDS, COPD, Heart and renal diseases
Fatigue 72–74% 76% 32–90%
Pain 71–74% 67% 34–96%
Lack of energy 69%
Weakness 60%
Appetite loss 53–70% 55%
Breathlessness 36% 36% 60–95%
Anxiety/depression 40% 57%
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• Progressive unavoidable weight loss, of 5% body weight in 3months or 10% in
6months.
• Serum albumin less than 2.5gm/dL.
• Presence of one or more stage 3 or 4 pressure ulcers (a.k.a. “injuries”).
• Progressive decline in Body Mass Index to less than 22, (especially <20).
• Advanced age greater than 88.
• Severe refractory symptoms such as fatigue, shortness of breath, peripheral
edema, or bowel obstruction.
A resident’s emotional demeanor, and their acknowledgment and acceptance of
serious illness can be an opportunity to review patient values and preferences, DNR
status, any advance health care directives, the presence or not of a power of attorney
or guardian for health care decisions and nancial matters, and the ability to communicate an informed choice (i.e., informed consent). In addition, it is important to:
• Determine the patient’s and/or surrogate decision maker’s current (and past)
decision-making capacity as to healthcare, practical and nancial matters.
• Acknowledge how patient culture, ethnicity, and religious/spiritual beliefs can
impact values, preferences, and choice of desired treatments, including no
treatment.
• Be aware that educational level and medical literacy can impact patient, care-
giver, and family understanding and lead to misunderstanding.
• Obtain and review any advanced health care directives (e.g., “Living Will”),
directive to physicians, power of attorney (whether durable or not), guardianship,
and their limitations, if any.
• Remember such documents are often state-specic and may not be applicable to
State law where the patient now resides.
• Inquire as to any previously written or orally expressed patient wishes.
• Remember the ethical principles of health care; autonomy (the right to patient
self-determination); benecence (the duty to do good); nonmalecence (to
avoid harm); justice (to treat fairly, equally, and equitably); and delity, the duty
of practitioners to be truthful, to support patient dignity, and to not abandon
patients.
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Symptom Assessment andManagement
In persons with advanced illness, appropriate assessment is often challenging
due to a patient’s cognitive impairment, fatigue, and multimorbidities. Nonpain symptoms are prevalent, often greater than pain, even in persons diagnosed with cancer (see Table2). For any symptom experienced by patients, a
quasi-stepped approach can enable practitioners to intervene in a timely and
effective manner.
First, recognize the presence of each symptom, then proceed to:
• Establish its intensity, temporal pattern, any exacerbating/relieving factors, loca-
tion, and effect on function and cognition.
• Determine whether the symptom is acute, chronic, or intermittent.
• Identify any associated symptoms.
• Assess its impact on quality of life, ADLs, cognition, decisional capacity, sleep,
mood, and dignity.
• Review previous and current treatment for the symptom.
• Perform an appropriate, timely, and symptom-focused physical exam.
• Ascertain, if possible, the likely pathophysiology underlying the symptom.
• Consider whether any medication could be causing or aggravating the symptom.
• Identify potentially reversible causes.
• If necessary, use the least invasive diagnostic testing, if any, to minimize patient
pain, discomfort, or suffering.
• Given the above steps determine the most likely diagnosis, (if possible).
Table 2 Symptom assessment scales
Symptom Assessment scales to consider
Anorexia Functional Assessment Anorexia/Cachexia Therapy Scale
Anxiety Hamilton Anxiety Rating Scale (HAM-A)
Cognition Folstein MMSE, COGNISTAT, MOCA
Constipation Modied Constipation Assessment Scale, Patient Assessment of Constipation
Tool
Delirium Confusion Assessment Method (CAM), Delirium Rating Scale
Depression Beck Depression Inventory, Short Form Geriatric Depression Scale, Zung
Depression Scale, Cornell Scale for Depression in Dementia, CES-D Boston
Short Form
Dyspnea Numerical Analog Scale (i.e., 0–10) Visual Analog Scale (VAS)
Fatigue NAS, VAS, Fatigue Symptom Inventory
Nausea VA S
Pain Numerical Analog Scales (NAS), Visual Analog Scales (VAS), Verbal Descriptive
Scale, Wong-Baker FACE Scale, FLACC Scale, Brief Pain Inventory (BPI),
PAINAD
Spiritual
pain
RESOURCES: City of Hope Pain and Palliative Care Resource Center. http://www.cityofhope.org/
prc. UNIPAC Series. American Academy of Hospice and Palliative Medicine. Fifth Edition. 2017
FICA Spiritual Assessment Tool, Herth Hope Index
Integrating Palliative Care into Long-Term Care
203
• Always evaluate for the presence of any psycho-emotional, spiritual, social, or
practical factors that are contributing to the symptom.
• Initiate palliative and traditional treatment based upon the primary illness, phase
of illness, prognosis, comorbidities, and patient/family preferences for care and
care setting.
• Consider complementary and alternative therapies especially if requested by
patients and families.
Any symptom can be complex and multifaceted, thus an interdisciplinary and
transdisciplinary approach and treatment plan is more likely to be successful.
Consider nonpharmacologic and practical interventions in an attempt to alleviate
each symptom, i.e., change in body position, room temperature or ventilation, patient/
family, and staff education. Foremost consider timely pharmacologic treatment to
palliate the distressful symptom. Finally, consider any medical and/or pharmacologic
treatments directed at the underlying cause of the symptom (if known). The response
to treatment and its outcomes, benets, and burdens must be carefully balanced and
the treatment adjusted accordingly, acknowledging that the goals of care can change
over time as advanced care planning transitions to terminal care planning.
Keep in mind that interventions to relieve distressful symptoms can lead to unin-
tended consequences (concept of double effect). For example, the use of opioids to
treat pain can result in constipation and/or nausea, which in turn must be anticipated
and addressed. Often, it is reasonable to continue the rst-line treatment while initiating another treatment to alleviate the rst is adverse effects. In the rare case of
severe and intractable symptoms, including intolerable existential or psychological
distress, the use of palliative sedation may be a consideration (NHPCO position
statement 2010) [9], which states its use is “For the limited number of imminently
dying patients who have pain and suffering that is a) unresponsive to other palliative
interventions less suppressive of consciousness and b) intolerable to the
patient………… palliative sedation is an important option to be considered by
health care providers, patients and families.”
At the practitioner and systems level, use of uni- or multidimensional tools may
be helpful to assess a variety of symptoms (refer to Table3) dependent upon ease of
use and evidence-based palliative care. The Edmonton Symptom Assessment
Survey (ESAS) is a scale that assesses for the presence and intensity of multiple
symptoms and its score followed over time.
Several reviews have more thoroughly detailed the management of pain and
other symptoms that occur in patients with advanced illness who reside in long-term
care facilities [10, 11] and in general practice [12]. Other excellent resources include
the “UNIPAC” Series, a publication of the American Academy of Hospice and
Palliative Medicine, Fast Facts and Concepts (available at the Center to Advance
Palliative Care website), the American Medical Directors Association Clinical
Practice Guideline (CPG) on “Pain Management in the Long-Term Care Setting”
and its respective CPG implementation manual, and the Palliative Care Formulary
[13]. It should be noted that some medications are used “off-label” to palliate symptoms (i.e., not FDA-approved of the treatment of these symptoms), so practitioners
should exercise due diligence and precaution when prescribing them.
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Table 3 Major mechanisms of nausea/vomiting
Cause Pharmacologic management
• Cortical:
– tumor, increased intracranial pressure Dexamethasone
– anxiety, situational stressors Benzodiazepine
– pain response Opioid, other pain medication/adjuvants
• Vestibular:
Meclizine
Scopolamine
Dimenhydrinate
• Chemoreceptor Trigger Zone:
– medications Decrease dose or discontinue, if possible
– metabolic (e.g., kidney/liver failure) Haloperidol, olanzapine
– hyponatremia Sodium chloride, demeclocycline
– hypercalcemia Bisphosphonate, dexamethasone
• Gastrointestinal:
– drug related Stop drug, consider PPI
– tumor Promethazine, metoclopramide, octreotide
– constipation Bowel regimen
– cough-induced Opioid, anticholinergic
Adapted from UNIPAC Four, 5th Edition, 2017, AAHPM
P. Winn
Anorexia/Cachexia
Anorexia is dened as a lack of appetite that may be associated with cachexia; the
latter a catabolic state characterized by severe muscle loss with or without loss of
adipose tissue. Either can occur during the late stages of advanced severe progressive illness.
Management Includes the Following:
• Assess for anorexigenic effects of medications such as chemotherapeutic drugs,
antidepressants, NSAIDs, opioids.
• Evaluate whether either could be caused by or related to other symptoms such as
nausea, constipation, or poorly controlled pain.
• Assess for any potentially reversible medical condition(s) such as a rectal fecal
impaction, urinary retention, oral candidiasis, or other gastrointestinal causes
such as GER, gastritis, or gastroparesis.
• Initiate practical interventions: small, frequent meals; administer medications
separate from or with meals; encourage good oral care; try a variety of foods;
improve the social and environmental aspects of eating.
Consider an Appetite Stimulant Such As:
• A corticosteroid: prednisone 5–20mg/d; dexamethasone 4–8mg/d.
• A progestin: megestrol, a maximum of 400–800mg/d or less (trial 4–8weeks).
Integrating Palliative Care into Long-Term Care
205
• If anorexia is concomitant with depression, it may be reasonable to prescribe
mirtazapine as an appetite stimulant (FDA off-label) and mood enhancer that
may also improve sleep, recommended it be given at bedtime.
Note that the appetite stimulant effect of a corticosteroid often decreases after
several weeks. Megestrol can cause lower limb edema and increase the risk of
thrombophlebitis and thromboembolism. Consider oral nutritional supplements,
though decreased appetite at meals may occur as a result of their use. If used, it is
preferable to use nutritional supplements that are lactose free, especially in the
elderly or African Americans who have a higher prevalence of lactose intolerance.
There is insufcient evidence to recommend the use of cannabinoids (dronabinol),
cyproheptadine, an androgenic steroid (oxandrolone), or thalidomide, though a
therapeutic trial may be considered if refractory anorexia. A patient’s advance directive for health care may either request or preclude articially administered nutrition
and hydration.
Dyspnea
Dyspnea is dened as discomfort in breathing that includes the sensation of breathlessness, shortness of breath, or an increased work of breathing. Often it is not
associated with tachypnea or hypoxemia. Its assessment and management include
the following:
• Rating of dyspnea is subjective and can be based on patient self-report and
assessed on a numerical scale of 0–10.
• Initiate practical interventions such as the use of a fan to improve air circulation,
ensure a comfortable ambient room temperature, eliminate respiratory irritants
and strong odors such as perfumes, frequently reposition the person, encourage
purse-lip breathing.
• Assess for potentially reversible causes, such as pneumonia, pleural effusion,
pulmonary embolus, heart failure, anemia, bronchospasm.
• Recognize any associated symptoms such as cough, possible aspiration, excessive respiratory secretions, anxiety, social or nancial concerns, and spiritual
suffering.
• First-line pharmacotherapy for palliation of dyspnea is an immediate-release
opioid administered every 3–4h. For mild dyspnea and to minimize the risk of
respiratory depression in an opioid-naïve patient, start with morphine sulfate
2.5–5mg PO or the oral morphine equivalent (OME) of another opioid, (refer to
OME interconversion Table 12 later in this chapter). Titrate the opioid dose
upward 25–50% every 12–24h to attain sufcient relief of dyspnea. Note that an
opioid-tolerant patient is one who has been taking a consecutive oral daily MME
(morphine milligram equivalent) of 60mg or more for 7–10days.
• For excessive oral or respiratory secretions consider hyoscyamine PO/SL; glycopyrrolate PO; atropine ophthalmic solution SL; scopolamine solution SL; or a
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scopolamine patch every 3days. To loosen thick respiratory secretions, consider
guaifenesin.
• Optimize medical treatment of the primary respiratory or cardiac condition (i.e.,
COPD, heart failure).
• Consider prescribing a low dose benzodiazepine, preferably lorazepam given as
either a tablet or sublingual concentrate for breakthrough or refractory dyspnea
as anxiety can be a major contributing factor.
• Always gauge any medical treatment based upon its benets versus burdens,
phase of illness, prognosis, patient preferences, and advance health care directives.
• Remember that patients with dyspnea often do better with a scheduled dose of an
opioid (and a benzodiazepine) rather than administered as needed (PRN) dosing.
Opioids are effective in treating dyspnea in patients with COPD, though may be less
effective relieving dyspnea in patients with cancer or heart failure. There is poor
evidence as to the effectiveness of nebulized opioids, though it may warrant a therapeutic trial in refractory dyspnea. Though the use of oxygen may reverse hypoxemia, dyspnea may not improve. Be aware of the potential for oxygen therapy to
cause hypercapnia and subsequent obtundation or respiratory arrest. When using an
opioid for dyspnea it is prudent to aim for a respiratory rate between 14 and 20.
• Initiation or continuation of noninvasive ventilator (NIV) support as well as
CPAP or BiPAP may be warranted under special patient circumstances in late
stage COPD or ALS, though its associated physical discomfort and its hindrance
to patients in communicating with family may preclude their use.
Not infrequently the family may request the use of oxygen for non-hypoxemic
dyspnea. While there is no evidence to support this, at times it may alleviate either
the discomfort of breathing that patients experience or the emotional distress that
families may endure who observe breathlessness in their family member.
Nausea andVomiting
The most rational approach to managing nausea and/or vomiting is to understand
the four main pathophysiologic mechanisms and the neurotransmitters that mediate
the emetic reex in the brain (refer to Table3). This will allow for a more effective
choice of antiemetic drugs (i.e., antihistaminic, anticholinergic, antiserotonergic,
antidopaminergic).
Management of Nausea/Vomiting Includes:
• Determine whether any medications are emetogenic such as chemotherapeutic
agents, some antibiotics, bowel stimulants, opioids, NSAIDs.
• Identify potentially reversible causes such as GER, gastroparesis, constipation,
rectal impaction, bowel obstruction, adynamic ileus, urinary retention, and UTI.
• Consider emotional and spiritual factors, including anticipatory anxiety that can
occur prior to medical treatment.
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