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P E R S P E C T I V E P A P E R

The Role of Rehabilitation in


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Patients Receiving Hospice and


Palliative Care
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Marcos Montagnini, MD, FACP1 ; Noelle Marie Javier, MD2 ; Allison Mitchinson, MPH, BCTMB3
1
Division of Geriatrics and Palliative Medicine, University of Michigan, Ann Arbor, MI; 2 Brookdale Department of
Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY; and 3 VA Ann Arbor
Healthcare System, Ann Arbor, MI

Patients receiving palliative and hospice care experience high levels of functional loss, dependency on activities
of daily living, and impairment in mobility. Physical disability affects important aspects of life, oftentimes
leading to depression, poor quality of life, increased caregiver needs, increased health resource utilization,
and institutionalization. Physical strength, the number of hours spent in bed, and the ability to do what
one wants are important indicators of quality of life for patients with cancer and their families. Progressive
debility with a sense of being a burden has been cited in the literature as a reason for desiring death among
these patients. This perception of increased dependence on others serves as a strong predictor for a patient’s
interest in the physician aid in dying (PAD). This highlights the desire and willingness of most palliative and
hospice care patients to remain physically independent during the course of their disease. Several studies have
shown that maintaining the most optimal level of functional ability, especially mobility, for as long as possible
is one of the main benefits of rehabilitation in the palliative and hospice care settings. Studies demonstrate
that rehabilitation in patients receiving hospice and palliative care can reduce the burden of care for families
and caregivers and improve patient’s quality of life, sense of well-being, as well as control of pain and non-
pain symptoms. (Rehab Oncol 2020;38:9–21) Key words: activities of daily living, cancer, disability, functional
disability, functional dependence, hospice, impairment in mobility, palliative care, rehabilitation, quality of
life

Patients with life-limiting illnesses and who may be physical disability affects many aspects of life, resulting in
receiving hospice or palliative care services experience depressed mood, increased caregiver needs, overall poor
progressive debility as evidenced by high levels of func- quality of life, and greater need for institutionalization.3-5
tional loss, increased dependency with activities of daily Physical strength, hours spent in bed, and the ability to
living (ADL), and mobility dysfunction.1,2 Disability re- do what one wants are invaluable indicators of quality of
sults from multiple factors such as deconditioning, muscle life for many patients with cancer and their families.4-7
fatigue, sarcopenia from direct tumor effects, malnutrition, Maintaining the highest level of functional abilities, es-
depression, complications from therapies, bowel and blad- pecially mobility, through rehabilitation therapies is one
der dysfunction, uncontrolled pain, thromboembolic dis- of the most fulfilling goals for this population. However,
ease, neurologic dysfunction, musculoskeletal deficits, and these services are underutilized despite the growing body
active concurrent illnesses, among others.3,4 Therefore, of literature supporting its benefits. The concept of reha-
bilitation in patients receiving hospice or palliative care
would seem paradoxical. However, in reality, rehabilita-
Rehabilitation Oncology tion is highly appropriate for these patients if functional
Copyright C 2020 Academy of Oncologic Physical Therapy, APTA.
improvement is within their goals. Rehabilitation strategies
can reduce the burden of care for families and caregivers.
The authors declare no conflicts of interest. They also improve patients’ quality of life and satisfaction
Correspondence: Marcos Montagnini, MD, FACP, Division of Geriatrics of care and reduce distressing symptoms such as pain and
and Palliative Medicine, University of Michigan, 2215 Fuller Rd (11-G),
Ann Arbor, MI 48104 (mmontag@umich.edu). anxiety.1,2,8-10 The main goal is therefore to help the pa-
DOI: 10.1097/01.REO.0000000000000196 tient live a good life regardless of physical disabilities and
impairments. Rehabilitation in both hospice and palliative

Rehabilitation Oncology Rehabilitation in Hospice and Palliative Care 9

Copyright © 2020 Academy of Oncologic Physical Therapy, APTA. Unauthorized reproduction of this article is prohibited.
care settings can potentially help patients regain control delivered in partnership with other clinical disciplines and
over many aspects of their lives and to remain as function- aligned with the values of the patients who have serious
ally independent and productive as possible.11-13 and often incurable diseases in the context punctuated
by intense and dynamic symptoms, psychological distress,
and medical morbidity to realize potentially time-limited
OBJECTIVES trials.17 Moreover, the concept of palliative rehabilitation
1. To define the role of rehabilitation in the hospice was historically derived from Dietz’s concept of cancer
and palliative care settings; rehabilitation according to disease staging.18,19 Preventive
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2. To discuss key points in the assessment and plan- rehabilitation attempts to preclude or mitigate functional
ning of palliative rehabilitation; and morbidity caused by cancer or its treatment. Restorative
3. To provide an overview of the roles of physi- rehabilitation refers to the effort to return patients to their
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cal therapy, occupational therapy, speech-language premorbid functional status when little or no long-term im-
pathology, and massage therapy in facilitating re- pairment is anticipated. Supportive rehabilitation attempts
habilitation in the hospice and palliative care to maximize function after permanent impairments caused
settings. by cancer and/or its treatment. Palliative rehabilitation’s
primary goal is the reduction of dependence in mobility
and self-care activities in association with the provision of
OVERVIEW OF REHABILITATION AND PALLIATIVE comfort and emotional support.
MEDICINE
The specialties of rehabilitation medicine and pallia-
tive medicine play critical roles in the care of patients with EVIDENCE-BASED APPROACH TO PALLIATIVE
cancer along the continuum. Both specialties recognize REHABILITATION
the health-related quality-of-life effects of physical and Data supporting the role of rehabilitation in hospice
psychological impairments.14,15 Furthermore, they both and palliative care have grown steadily since the sentinel
use interprofessional teams to regularly evaluate patients’ study of Yoshioka10 in 1994. There is now official recog-
medical, physical, cognitive, and functional status. They nition of the benefits of rehabilitation in this population
also ensure that patients’ goals remain relevant while con- (Table 1).
curring disease or symptom-directed therapies exist. Both Yoshioka’s10 study documented that hospice patients
fields of medicine help develop applicable measures that as- who received rehabilitation had improved quality of life
sess constructs valued by patients and their caregivers such and mobility and reduced symptoms such as pain, dysp-
as symptom control and function. Rehabilitation and pal- nea, constipation, and leg edema. About 63% of patients
liative medicine share a common goal of using multimodal considered rehabilitation modalities to be effective.10 Sub-
approaches to managing pain and other symptoms that sequent studies by Porock et al20 and Oldervoll et al21 re-
could be debilitating for patients and their caregivers.14,15 vealed that structured physical exercise programs reduced
There is a clear distinction between conventional or fatigue and anxiety and improved quality of life in patients
traditional rehabilitation and palliative rehabilitation.15 Pa- receiving hospice and palliative care services.
tients without serious life-limiting illnesses can benefit Two separate but related studies by Sabers et al22 and
from conventional rehabilitation with the hope or expec- Marciniak et al23 used a comprehensive inpatient reha-
tation that they will be able to recover and go back to their bilitation approach for patients with cancer. The former
previous level of functional state (if possible) despite their showed significant reduction in pain and improvement in
impairments or disabilities. mood, mobility, quality of life in the last 3 days, and com-
fort with going home and directing care. The Marciniak
et al23 study highlighted that the presence of metastatic dis-
DEFINITION OF PALLIATIVE REHABILITATION ease did not influence functional outcomes. Patients with
Rehabilitation in the palliative and hospice care set- cancer who received radiation therapy most notably made
tings has gained increased recognition in the literature. It larger functional improvements.23 Montagnini et al24 sup-
is defined as a process of helping a person to reach the ported findings that inpatient physical therapy benefited
fullest physical, psychological, social, vocational, and edu- more than half of patients receiving palliative care. Their
cational potential consistent with his or her physiological ADL scores improved within 2 weeks and after comple-
or anatomical impairment, environmental limitations, de- tion of the program. Furthermore, patients with higher
sires, and life plans.2,16 Impairment is defined as the loss or albumin levels were correlated with greater functional
abnormality of psychological, physiological, or anatomical improvement.24
structure or function resulting from pathology, whereas Scialla and colleagues25 retrospectively studied older
disability refers to any restriction or lack of ability to per- patients with cancer asthenia who underwent compre-
form an activity in the manner or within the range consid- hensive multidisciplinary inpatient rehabilitation. The
ered normal for a human being.16 Cheville et al17 in 2017 rehabilitation goal for all patients was to maximize their
proposed a definition that in the advanced cancer pop- functional status to a level allowed by their impairments.
ulation, palliative rehabilitation is function-directed care Using the Functional Independence Measure (FIM) for

10 Montagnini et al Rehabilitation Oncology

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TABLE 1
Summary of Selected Evidence-Based Literature on Palliative Rehabilitation

Author(s) Methodology Sample Size Intervention and Outcome Measures Results

Yoshioka10 Retrospective case series in a 301 patients with terminal Rehabilitation within 6 mo of death 63% patients considered rehabilitation
hospice facility in Japan cancer Therapeutic exercises for range of motion, balance, procedures to be effective
muscle strength 27% average improvement in ADL scores

Rehabilitation Oncology
- ADL training Improvement in the BI score from 12.4
- Bed exercises prerehabilitation to 19.9 postrehabilitation
- Endurance training Almost all patients experienced some relief
- Chest PT from pain, dyspnea, leg edema, and
- Swallowing exercises constipation
- Thermotherapy Families expressed satisfaction with the
- Intermittent pneumatic compression program
- Acupuncture
- Use of brace, sling, and splint
- Comfortable or relaxed positioning with pillows
Measurement:
BI scores before and after rehabilitation
Porock et al20 Experimental pre- and 9 patients enrolled in hospice 28-d exercise intervention Overall minimal fluctuation in the mean MFI
posttest design in a home (mean age 59 y) Measurements: subscale scores between days 0 and 28
hospice program in MFI The general fatigue score remained the same
Australia Symptom Distress Scale HADS trended toward decreased anxiety levels
HADS Patients enjoyed the exercise, and fatigue was
Graham and Longman’s QOL Scale not worse
Improvement in overall QOL scores
Oldervoll et al21 Phase II interventional 63 patients receiving hospice 6 wk of structured exercise program supervised by a 34 patients completed the study
(exercise) study in a and palliative care physical therapist Significant increase in walking length by 29 m
palliative care unit and an Exercise consisted of 10 min of warm-up session, from pre- to posttest (P = .007)
oncological outpatient 30 min of circuit training in 6 stations, and 10 min Significant decrease in timed sit to stand from
clinic in Norway of relaxation/stretching session 5.1 to 4.1 s (P = .001)
Measurements for physical performance and balance: Measuring balance by functional reach
Six-Minute Walk Test improved from 30.4 to 32.8 cm (P = .07)
Timed repeated sit to stand The fatigue score improved (P = .06)
Functional reach Dyspnea reduced (P = .006)
Measurement for fatigue: Global QOL remained stable
Fatigue Questionnaire Role and social functioning improved from 50
Measurement for QOL: to 63 points (P = .02) and from 55 to 65
EORTC-QOL questionnaire points (P = .008), respectively
Sabers et al22 Prospective study at the 299 patients hospitalized with Inpatient rehabilitation 189 completed the study
Mayo Clinic in Rochester, cancer Measurements: Significant improvement in KPS and BI scores
Minnesota Barthel Mobility Index (BI) at completion of the program
KPS Improvement in multiple QOL parameters
QOL questionnaire at enrollment and completion of Nearly half of the patients (49%) believed they

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the program benefited from rehabilitation
(continues)

Rehabilitation in Hospice and Palliative Care 11


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12
TABLE 1
Summary of Selected Evidence-Based Literature on Palliative Rehabilitation (Continued)

Author(s) Methodology Sample Size Intervention and Outcome Measures Results

Montagnini et al
Marciniak et al23 Retrospective case series in a 159 patients with functional Comprehensive inpatient rehabilitation Significant functional gains made between
university-affiliated impairments related to cancer Measurement: admission (mean FIM score = 4.29) and
rehabilitation hospital in or its treatment FIM-MM discharge (mean FIM score = 56) (P < .001)
the United States The presence of metastatic disease did not
influence functional outcome
Those receiving radiation therapy made larger
functional gains
Montagnini Retrospective chart review in 100 consecutive patients Completion of inpatient PT program PT benefited 56% of patients, with notable
et al24 a hospital-based palliative receiving palliative care and Measurements: improvement in ADL scores
care unit at a Veterans who were discharged from a ADL scores on admission, at 2 wk, and upon A higher albumin level was correlated with
Affairs Medical Center palliative care unit completion of the PT program functional improvement
Scialla et al25 Retrospective chart review 110 patients with cancer and Comprehensive multidisciplinary inpatient Improvement in the median total FIM score
in a rehabilitation hospital who were older than 60 y rehabilitation from admission (71) to discharge (88)
in Scranton, Pennsylvania Measurements: Improvements in physical function, asthenia,
FIM-MM and cognition
FIM-CM
Huang et al26 Case-controlled, 63 patients with brain tumor Acute inpatient rehabilitation No significant difference found in both
retrospective study in a who were matched with 63 Measurements: populations in regard to total admission
tertiary care medical patients with acute stroke FIM scores on admission and discharge and measured FIM, total discharge FIM, change in total
center inpatient according to age, sex, and in 3 subsets, namely, ADL, mobility, and cognition FIM, or FIM efficiency
rehabilitation unit location of lesion FIM change and FIM efficiency were also calculated The admission mobility-FIM was higher in the
brain tumor group (13.6 vs 11.1, P = .04)
The admission ADL-FIM was found to have a
greater change in the stroke group (P = .03)
The 2 groups had similar rates of discharge to
the community at 85%
The tumor group had a significantly shorter
rehabilitation length of stay than the stroke
group (25 vs 34 d, P < .01)
Cole et al27 Retrospective case series in a 200 patients with cancer and Comprehensive multidisciplinary inpatient All patients made significant gains in motor
rehabilitation hospital in who were older than 18 y rehabilitation function regardless of the diagnostic group,
Scranton, Pennsylvania Measurements: the rehabilitation impairment group, the
FIM-MM and FIM-CM rehabilitation goal group, and cytotoxic
treatment status
Significant gains in cognitive function were
made by all patients except those with
intracranial neoplasms and central nervous
system dysfunction

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(continues)

Rehabilitation Oncology
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TABLE 1
Summary of Selected Evidence-Based Literature on Palliative Rehabilitation (Continued)

Author(s) Methodology Sample Size Intervention and Outcome Measures Results

Pyszora et al28 RCT 60 patients with advanced Treatment group: 30-min PT sessions (active Significant reduction in fatigue scores
cancer receiving palliative exercises, myofascial release, and Improvement in general well-being
care proprioceptive neuromuscular facilitation Reduction in symptoms (pain, drowsiness, lack

Rehabilitation Oncology
techniques of appetite, depression)
Control group: No exercise Positive satisfaction scores
Measurements:
Brief Fatigue Inventory
Edmonton Symptom Assessment Scale
satisfaction scores
Schuler et al29 RCT 77 patients with advanced Physical exercise program and its effect on Rate of severe general fatigue significantly
cancer fatigue at 12 and 24 wk after baseline reduced with group C
Group A: Treatment as usual All MFI dimensions increased in group A
Group B: Structured sports program Patients with self-directed exercise program
Group C: Additional ambulatory PT and additional PT supervision had more
Measurements: appreciable benefit on fatigue reduction
General fatigue using the MFI
Walking distance
Paramanandam Systematic review looking at the effect 10 articles involving adults with Physical exercise (aerobic, resistance, mixed, Nearly all studies except one (9/10) did not
and Dunn30 of exercises on cancer-related fatigue lung cancer with or at risk for flexibility) show decline in function for patients who
in lung cancer (PICOS format), lung cancer fatigue Measurement: exercised
period of 2001-2012 Fatigue score using the EORTC-QOL 7/10 studies showed that exercise intervention
Databases: CENTRAL, PubMed, questionnaire is safe and feasible
EMBASE, CINAHL, SPORTDiscus, Limitation: Studies are small
AMED, Web of Science
Salakari et al31 Systematic review using Fink’s model of 13 RCTs (1169 participants), 7 Physical exercise and massage among patients Exercise was associated with significant
RCTs within the period of 2009-2014 patients with advanced cancer with advanced cancer improvement in general well-being and QOL
Databases: MEDLINE, PubMed, Measurements: Rehabilitation had positive effects on fatigue,
Cochrane QOL general condition, mood, and cancer coping
AMSTAR method (A MeaSurement Symptom control (pain, mood, fatigue) Home-based exercise programs improved
Tool to Assess systematic Reviews) mobility and sleep quality and reduced
fatigue
Jensen et al32 Retrospective study in a specialized All consecutive patients with Physical exercise, breathing techniques, 93% of patients with terminal cancer were able
palliative care unit of a university terminal cancer treated in a relaxation therapy, positioning, to perform physical exercise at least once
hospital in Hamburg, Germany, from palliative care inpatient ward lymphedema treatment during their hospital stay
2009 to 2012 during a 3.5-y period were Physical exercise was feasible in 54% of the
included (n = 572) patients with terminal cancer, even within
the last days of their lives
About 50% received massage in the cohort who
were offered relaxation therapy
Older patients were just as receptive as their

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younger cohort to receive exercise
instructions
(continues)

Rehabilitation in Hospice and Palliative Care 13


Motor Function (FIM-MM) and Cognition (FIM-CM),

Abbreviations: ADL, activities of daily living; BI, Barthel Index; EORTC-QOL, European Organization for Research and Treatment of Cancer Quality of Life; FIM, Functional Independence Measure; FIM-CM,
Functional Independence Measure for Cognitive Function; FIM-MF, Functional Independence Measure for Motor Function; HADS, Hospital Anxiety and Depression Scale; KPS, Karnofsky Performance Scale;
a striking improvement in the median total FIM score

Positive effect of PT on the patient’s physical,


Support the utilization of PT in the palliative
from admission to discharge was observed.25 In contrast,

Improvement in mobility and ADL tasks


the Huang and colleagues26 case-controlled retrospective
study concluded that patients with brain tumors can

emotional, and social well-being


achieve positive outcomes and rates of discharge com-

Reduced musculoskeletal pain

Positive caregiver satisfaction


parable with patients with stroke. Furthermore, in the
Results

Cole et al27 study of 200 patients with cancer who under-


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went a comprehensive inpatient rehabilitation program,


most reported significant gains in motor and cognitive
care setting

functions.
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More recent data on the beneficial effects of physical


therapy on cancer fatigue were highlighted in the 2017
study by Pyszora et al28 in which 60 patients with cancer
receiving palliative care were randomized to the treatment
group (physical therapy program) versus control. Using
fall prevention, transfer training, etc) in the
PT interventions (strengthening, therapeutic
exercise, caregiver education, balance and

the Brief Fatigue Inventory, the treatment group had lower


Intervention and Outcome Measures
Summary of Selected Evidence-Based Literature on Palliative Rehabilitation (Continued)

scores of fatigue and its effect on daily functioning. More-


over, there were notable gains in general well-being and
reduced intensity of distressing symptoms such as pain.28
Critical Appraisal Skills Program

Another study by Schuler et al29 looked into the effect of


a structured individual sports program on fatigue among
palliative care setting

patients with advanced cancer. This was a randomized con-


Caregiver satisfaction

trolled trial (RCT) that enrolled 77 patients, the majority of


Symptom control

whom were receiving palliative intent to treat, who partic-


MFI, Multidimensional Fatigue Inventory; PT, physical therapy; QOL, quality of life; RCT, randomized controlled trial.
Measurement:

Patient QOL

ipated in the exercise program, and whose fatigue scores


were monitored at 12 and 24 weeks after baseline. The
program contained 5 standardized exercises for strength
TABLE 1

training and endurance such as walking, running, and bi-


cycling. The exercises that were conducted mostly at home
occurred 5 times per week for 12 weeks. The trial demon-
strated the positive effects of physical exercise on cancer
and treatment-related symptoms such as severe fatigue.29
Sample Size

13 qualitative articles

Furthermore, the study underscored the benefit of exercise


among patients with cancer receiving curative and/or pal-
liative care. Paramanandam and Dunn30 showed a trend
that physical exercise might be helpful for patients with
lung cancer fatigue including those receiving palliative
care.
A 2015 systematic review of 13 RCTs on the effects
of physical exercise among patients with advanced can-
Journal of Palliative Care, Google

cer underscored that it led to significant improvement in


scholar, and American Journal of
1994-2015) using the following

Hospice and Palliative Medicine


MEDLINE, Cochrane, PEDro,
databases (CINAHL PubMed,

general well-being and quality of life.31 Overall, rehabilita-


Systematic review (period of

tion showed positive effects on fatigue, general condition,


Methodology

mood, and coping with cancer.31


Jensen et al32 systematically studied the feasibility of
physical therapy in 528 patients with terminal illness. Re-
sults showed that physical therapy is practical and attain-
able in more than 90% of patients who are terminally ill
and dying.32 Putt et al33 published a systematic review of
13 qualitative and quasi-experimental articles supporting
the utilization of physical therapy interventions such as ex-
ercise, balance and fall prevention training, and massage,
among others, in the care of patients receiving palliative
al33

and hospice care. Moreover, there are psychological bene-


Author(s)

Putt et

fits experienced by patients who are dying. These include


positive mood and improved function and overall quality
of life.33

14 Montagnini et al Rehabilitation Oncology

Copyright © 2020 Academy of Oncologic Physical Therapy, APTA. Unauthorized reproduction of this article is prohibited.
Although the studies listed in Table 1 show numer- issues, clinicians and rehabilitation specialists might con-
ous benefits of rehabilitation strategies in the hospice and sider a 1-time evaluation during a patient’s inpatient stay
palliative care settings, it is important to emphasize that so that both the patient and caregivers are educated on
physical and cognitive functions change dramatically on helpful rehabilitation techniques to be continued at home
a daily basis. It is therefore prudent to review physical or in an outpatient setting. For patients receiving home-
therapy goals and to customize interventions on a regu- based palliative care, rehabilitation therapies may be of-
lar basis. Rehabilitation therapists will have to be flexible fered through Medicare Part A home care program as a
with the treatment plan while respecting patient choices skilled need rather than a separate or specific coverage for
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and acknowledging frequent interruptions in day-to-day palliative rehabilitation. Furthermore, depending on the
therapies. severity of the serious illness and the level of functionality,
patients might benefit from conventional rehabilitation in
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subacute, home, and outpatient settings before formally


PLANNING FOR PALLIATIVE REHABILITATION enrolling in hospice services at home or in a facility. Medi-
In general, the rehabilitation plan is designed in care Part A and most private insurances will reimburse for
collaboration with members from multiple disciplines conventional rehabilitation.37
including physical therapy, occupational therapy, speech- Discharge planning is a vital part of the rehabilita-
language pathology, psychology, nursing, nutrition, tion plan. This is achieved through a dynamic team-based
respiratory therapy, recreational therapy, case manage- approach that takes into account the patient’s progress to-
ment, pharmacy, social work, chaplaincy, and patient ward meeting the preestablished rehabilitation goals, the
care associates, to name a few. This collaboration is degree of caregiver support postrehabilitation, and the ap-
coordinated by a physiatrist experienced in hospice and propriate setting for further care.37 Frequently, the pa-
palliative medicine.34 The plan should be individualized tient is followed by the entire team including therapies
and tailored on the basis of the patient’s stage of serious until death or transition to and from palliative care or
illness, overall prognosis, potential to regain function, and hospice care. Patients with serious illness who are dis-
desire and motivation to participate in the program. charged from the hospital and later enrolled in hospice
Rehabilitation can be provided in a number of settings and have the desire to continue some degree of function-
including inpatient, outpatient, and home-based venues.35 ality could benefit from palliative rehabilitation regardless
Inpatient acute rehabilitation is designed for patients who of the hospice venue (eg, home, acute inpatient, long-term
are able to tolerate at least 3 hours of daily therapy 5 care, assisted living). Rehabilitation therapists who work
times per week. Subacute inpatient rehabilitation offers with hospice can provide a limited number of visits to pa-
coordinated interprofessional services to patients who can tients. This is carried out typically as a 1-time to a few
tolerate at least 1 hour of therapy each day 5 times per times visit(s) depending on patient mood, degree of im-
week. Outpatient rehabilitation offers comprehensive in- pairment, and capacity to participate in meaningful therapy
terprofessional or single rehabilitation services for patients sessions on a daily basis. The provision of palliative reha-
residing in the community. Most home care agencies can bilitation services must be included in the comprehensive
provide physical therapy, occupational therapy, speech- hospice plan of care. Patients on hospice may choose to
language pathology, social work, and skilled nursing care disenroll from hospice should they feel the need to benefit
to patients who are homebound. Hospice programs may more from intensive rehabilitation such as consideration
occasionally provide rehabilitation services in the inpa- of further skilled home care, outpatient therapy, and sub-
tient setting as well as the home environment if aligned acute rehabilitation.38 In the same token, patients with
with goals of care and part of the comprehensive hospice serious illness undergoing subacute rehabilitation may be
plan of care.36 Financial coverage for these rehabilitation discharged from this level of care if they no longer meet
services is obtained through Medicare, Medicaid, and most criteria as a result of progression of disease, more disabil-
private insurance companies or third-party payers accord- ity, and lack of motivation to do so. Following discharge,
ing to their specific reimbursement criteria. Patients en- they may be enrolled in hospice if aligned with their goals.
rolled in the Medicare hospice benefit are eligible to re- The bottom line is that hospice care will work with patients
ceive them without additional cost.36,37 Medicare-certified and families to match their goals of care and will be flexible
hospice agencies are reimbursed on a daily rate for services with the provision and/or revocation of hospice services.
provided at home or in a facility. When the goal of further
home-based rehabilitation supersedes that being offered by
hospice, there is no direct reimbursement for additional PATIENT ASSESSMENT
sessions. Patients and families will have to explore out-of- Performing a comprehensive patient assessment is
pocket expense to continue more rehabilitation services an essential component of rehabilitation planning. This
at home or outpatient. Under the Medicare hospice bene- will help determine the patient’s previous level of func-
fit, rehabilitation resources covered include safety training, tioning, potential for functional recovery, and capacity
symptom control, and assistance with ADL. The financial to participate in a rehabilitation program. Information
reimbursement for patients receiving palliative care is not on disease staging, previous and current treatments, life
as well defined by medical insurances. To mitigate access expectancy, comorbidities, pain and nonpain symptoms,

Rehabilitation Oncology Rehabilitation in Hospice and Palliative Care 15

Copyright © 2020 Academy of Oncologic Physical Therapy, APTA. Unauthorized reproduction of this article is prohibited.
medications, cognition, mood, nutrition, and physical pain, respiratory function, sitting or standing bal-
function is necessary.39 The assessment of home and com- ance, mobility, walking or wheelchair locomotion,
munity support systems and financial resources is also ADL, fatigue, and motivation; and part 2, which
taken into consideration.40 A complete physical examina- pertains to a single overall rating of the patient’s
tion with careful attention to the musculoskeletal and neu- functional status.43,44
rologic systems is essential in determining motor strength, 4. The Palliative Performance Scale (PPS) quantifies
joint flexibility, gait, coordination, and fall risk.37,39,40 ambulation, activity level, self-care, oral intake,
Several functional assessment tools can be used to and level of consciousness. It is a reliable tool for
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quantify and qualify function, mobility, endurance, and determining survival in patients receiving hospice
fall risk in patients receiving hospice and palliative care and palliative care services and can provide infor-
services (Table 2). These include the following: mation on the patient’s care needs.45 PPS scores are
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1. The Karnofsky Performance Scale (KPS), origi- determined by reading horizontally at each level to
nally developed for patients with cancer, provides find a “best fit” for the patient, which is then as-
a global evaluation of the patient’s functional sta- signed as the %PPS score. The lower the score, the
tus. It is also a reliable tool for prognostication in more disability there is.
hospice and palliative care. The KPS consists of a 5. The Katz Activities of Daily Living was originally
100-point scale of general function corresponding developed for the frail geriatric population and is
to the patient’s ability to live independently and/or commonly used to evaluate physical function in
the need for institutionalization.41 patients receiving hospice and palliative care. It
2. The Eastern Cooperative Oncologic Group Scale is looks at 6 domains of function necessary for in-
a 5-point scale that quantifies a patient’s ability to dependent living including bathing, dressing, toi-
walk, care for self, and the need for dependence on leting, transferring, continence, and feeding, which
others. It was developed for patients with cancer are rated as dependent or independent.46 A score of
and is commonly used for prognostication in the 6 indicates full function, 4 indicates moderate im-
hospice and palliative care settings.42 pairment, and 2 or less indicates severe functional
3. The Edmonton Functional Assessment Tool was impairment.46
originally designed and validated for the palliative 6. The Lawton Instrumental Activities of Daily Living
care population. It consists of 2 parts, namely: part evaluates 8 domains of function including medi-
1, which assesses communication, mental status, cation management, telephone use, housekeeping,

TABLE 2
Functional Assessment Instruments

Category Assessment Instrument Characteristics

Physical Function Karnofsky Performance Scale (KPS)41 Provides a general measure of function; useful for prognostication
100-point scale (100 = normal function; 0 = death)
Eastern Cooperative Oncology Group Provides a general measure of function; useful for prognostication
(ECOG) Functional Index42 5-point scale (0 = perfect health; 5 = death)
Edmonton Functional Assessment Designed and validated for the palliative care population
Tool43,44 4-point scale (0 = functionally independent; 4 = total loss of function)
Palliative Performance Scale (PPS)45 Provides a general measure of function; reliable tool for prognostication
Katz Activities of Daily Living (ADL)46 Originally developed for older adults but frequently used for functional
assessment in the hospice and palliative care settings; measures 6 domains of
function; each domain is rated as 0 (dependent) to 1 (independent)
Total scores: 6 = full function; 4 = moderate impairment; 2 = severe
impairment.
Lawton Instrumental Activities of Daily Commonly used in geriatric populations; measures 8 domains of function; each
Living (IADL)47 domain is scored either 0 (impairment) or 1 (normal function)
Barthel Index48,49 Assesses 10 functional tasks; can be used for a measure of function and to track
improvement over time
Functional Independence Measure (FIM)50 Yields a total score, a motor score, and a cognitive score
Higher scores indicate independence
Balance/Fall Risk Berg Balance Scale51 Performance-based scale for balance with 14 items
Each task is measured on a 5-point scale (0 = lowest level of function; 4 =
highest level of function) (maximum total score = 56)
Tinetti Assessment of Gait and Falls52 Performance-based instrument, with 9 items for balance and 7 items for gait.
Each task is scored on a 3-point scale (0 = complete impairment; 2 =
independence).
Risk for falls if total score 19-24; high risk for falls if total score <19
Timed Up and Go (TUG)53 High risk for falls if time to complete the task ≥20 s
Endurance 6-Minute Walk Test (6MWT)54 Total distance (meters) walked in 6 min

16 Montagnini et al Rehabilitation Oncology

Copyright © 2020 Academy of Oncologic Physical Therapy, APTA. Unauthorized reproduction of this article is prohibited.
food preparation, laundry, financial management, ROLE OF PHYSICAL THERAPY
transportation, and shopping.47 A summary score Physical therapists are integral members of the re-
ranges from 0 (low function, dependent) to 8 (high habilitation and palliative care teams.55 More specific in-
function, independent).47 terventions used by physical therapists include the use of
7. The Barthel Index quantifies a patient’s capacity to physical modalities for pain control, provision of assistive
independently perform 10 tasks including feeding, equipment, environmental modification, education on en-
dressing, personal hygiene, bowel control, blad- ergy conservation, and exercise.56 Examples of physical
der control, wheelchair transfer to and from bed, modalities used to manage pain include massage, heat,
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toilet transfer, bathtub transfer, walking on level cold, ultrasound, transcutaneous electrical nerve stimu-
or being propelled by wheelchair, and ascending lation, diathermy, manual lymphatic drainage, and soft-
and descending stairs.48 Total possible scores range tissue mobilization.57 Physical therapists use assistive de-
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from 0 to 20, with lower scores indicating increased vices that are prescribed for ambulation, mobility, balance,
disability.48,49 pain, fatigue, weakness, joint instability, excessive skele-
8. The Functional Independence Measure is a com- tal loading, and elimination of weight-bearing on affected
prehensive observer-rated scale that contains 18 extremities. Orthotics can be helpful in enhancing joint
items rated on a 7-level ordinal scale, with a stability and safety for patients with motor deficits. Pallia-
score of 1 requiring total assistance and 7 with tive orthotic prescription is by and large often expensive,
full independence.50 The items include self-care, poorly tolerated by patients, and inconsistently covered by
sphincter control, mobility, locomotion, commu- third-party payers. It is important therefore to determine
nication, and social cognition. It is a reliable and whether it will enhance comfort. Environmental modifica-
valid tool measuring functional outcomes in reha- tion is a significant intervention by physical therapy. Some
bilitation settings.50 examples include placing a recliner on a platform to assist
For the assessment of fall risk, the Berg Balance Test51 in transfer, having a high stool in the kitchen to reach a
and the Tinetti Assessment of Balance and Gait52 are com- cupboard, and adjusting the height and arms of the chair
monly used. to assist in transfer. Moreover, patient education is a key
component of care. Patients are taught and trained in en-
9. The Berg Balance Scale is an observer-rated ergy management and conservation such as monitoring of
performance-based instrument that reviews 14 fatigue levels and guidance on rest periods. Physical ther-
tasks related to changes in position from sitting apists can also play an active role in caregiver education
to standing, transferring, reaching out with out- and support, including instructions on the use of equip-
stretched arm, turning, and standing on 1 foot. ment, good body mechanics, and utilization of strategies
Scores of more than 41 indicate high functional- to prevent falls and maintain balance. Physical therapists
ity and independence.51 are known to use therapeutic exercises in the maintenance
10. The Tinetti Assessment of Balance and Gait is of muscle strength, joint flexibility, range of motion, and
an observer-rated performance-based instrument balance. The positive effects of exercise in patients with
that contains 9 items for balance and 7 items for advanced cancer include enhancements in the physio-
gait. The items for balance include sitting bal- logical and psychological functional parameters such as
ance, rising, attempts to rise, immediate standing functional capacity, body composition, mood, self-esteem,
balance within 5 seconds, standing balance, be- quality of life, and distressing symptoms such as fatigue,
ing nudged, eyes closed, turning 360◦ , and sitting nausea, pain, muscle spasm, and edema.58 Recondition-
down. The items for gait include initiation of gait, ing programs for patients with advanced cancer include
step length and height, step symmetry, step conti- graded aerobic and stretching exercises to increase car-
nuity, path walked, trunk, and walking stance.52 diopulmonary capacity and endurance.59 In addition, pul-
11. The Timed Up and Go test is a performance-based monary rehabilitation programs for advanced lung cancer
instrument originally developed for older adults. include interventions such as inspiratory muscle retrain-
The patient is asked to stand without using prox- ing, noninvasive mechanical ventilation, education on oxy-
imal muscles if possible from a sitting position gen consumption, breathing techniques, postural drainage,
and asked to walk 3 m forward and come back management of secretions, and relaxation techniques.60
to a sitting position. The average normal time to Physical therapists can use interventions normally applied
complete the task is about 10 seconds. If the time with conventional rehabilitation albeit with more flexibil-
is more than 20 seconds, then the patient has a ity and creativity in matching treatment interventions with
higher risk of falling.53 overall goals of care and day-to-day changes in physical and
12. The Six-Minute Walk Test is a self-paced measure cognitive functions.
of endurance in which the patient is scored on his
or her ability to walk in 6 minutes. It is a useful
ROLE OF OCCUPATIONAL THERAPY
measure of functional capacity and is widely used
for measuring response in cardiac and pulmonary The National Council for Hospice and Specialist
rehabilitation.54 Palliative Care Services recognized the importance of

Rehabilitation Oncology Rehabilitation in Hospice and Palliative Care 17

Copyright © 2020 Academy of Oncologic Physical Therapy, APTA. Unauthorized reproduction of this article is prohibited.
occupational therapy in the rehabilitation of patients with include lip closure, tongue use, pocketing, effective mas-
cancer and palliative care patients.61 Occupational thera- tication, epiglottal use, esophageal tone, and contraction.
pists conduct baseline assessments and provide treatment For patients experiencing dysphagia, simple remedies in-
programs in several functional areas such as ADL, work clude modifying position, cuing, bolus modifications of
tasks, self-esteem, employment, role-related tasks (eg, food consistencies and bite sizes, and swallowing maneu-
parenting, recreation), use of adaptive equipment (eg, vers such as dipping chin, additional dry swallows, and
reachers, rocker knives, one-handed cutting boards), cop- many more.
ing skills, and discharge planning. More specific palliative
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interventions include home assessments for safety, equip-


ment prescription, coaching in personal and domestic ROLE OF MASSAGE THERAPY
tasks, educational strategies for symptom control (eg, In patients with advanced cancer, moderate pressure
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lymphedema and skin care), relaxation techniques, stress effleurage (a form of Swedish massage) is used often and
management, facilitation of social and leisure activities, can be combined with myofascial release, neuromuscular
and provision of support for caregivers.57,62 The study therapy, friction, and/or compression to treat specific prob-
by Lee et al63 looked at the effectiveness of occupational lem areas such as shoulder pain.68 Techniques may need to
therapy in promoting feeding independence through fine be modified, pressure-reduced, or avoided when patients
motor therapies among patients with end-stage cancer. have metastases, low platelet counts, skin breakdown, deep
Notable improvement in feeding independence was vein thrombosis, severe cachexia, and the presence of med-
observed from baseline to week 1. This was sustainable ical devices.69 Massage performed by licensed and trained
up to 3 weeks. This improvement increased quality of life, massage therapists or physical therapists is safe and rarely
promoted ADL function, and reduced overall functional leads to adverse events.70,71 Two-thirds of patients with
debility.63 When receiving inpatient and home-based advanced, metastatic, or terminal diseases have pain and
palliative care, occupational therapists assess the patients’ other associated symptoms such as fatigue, insomnia, and
physical and cognitive abilities to participate in therapy shortness of breath.72,73 Studies support the role of mas-
sessions on a regular basis. For patients enrolled in sage therapy in decreasing anxiety and improving mood in
hospice, the emphasis of training will be on both patients’ patients with advanced cancer and those receiving pallia-
abilities to carry out functional tasks related to their goals tive care.74,75 In this instance, massage can induce a state of
and the training of caregivers who will continue further relaxation and peacefulness that can improve overall well-
rehabilitation of the patients at home once the formal being and promote better sleep.69,71,75,76 Furthermore, soft
hospice rehabilitation visits are completed. or gentle massage can help a patient find inner peace, dig-
nity, and a sense of hope, thereby supporting the emotional
and spiritual dimensions as well.77 Massage can also pro-
ROLE OF SPEECH-LANGUAGE PATHOLOGY vide a temporary respite from suffering, especially if the
In general, there are 4 roles practiced by the speech- person is socially isolated or confined to the bed. Although
language pathologists (SLPs) at the end of life.64 First, they research studies on massage as an adjuvant for cancer pain
provide consultations to patients, families, and the hospice have been limited by small sample size and study design,
team in the areas of communication, cognition, and swal- 2 recent meta-analyses have concluded that massage has a
lowing functions. Second, they develop strategies in the beneficial effect on the relief of cancer pain, including pain
areas of communication skills to support patients’ role in experienced by patients with metastatic bone disease.78-80
decision making, maintenance of social closeness, and as- It is important to underscore that studies examining the
sistance with patients approaching end of life in terms effect of massage on pain control among patients with can-
of their fulfillment of functional goals.65,66 Third, they cer have not distinguished the different types of pain or
assist in optimizing function related to dysphagia symp- specific sources of pain and have used protocols that do
toms, thereby improving patient comfort and satisfaction not focus on specific pain areas. According to the 2016
and promoting positive feeding interactions with family data of the Centers for Disease Control and Prevention,
members. Fourth, they communicate with the hospice and about 20% of Americans have chronic pain that increases
palliative care teams in the provision and acknowledgment in prevalence with advancing age.81 As a result, patients
of feedback related to overall patient care. Speech-language with cancer may experience other sources of pain besides
therapy also addresses functional tasks involving the oral- their primary cancer diagnosis such as concurrent arthritis
pharyngeal-laryngeal function and the cognitive compo- or rotator cuff injuries. Furthermore, myofascial pain is
nents in the communication process.67 underrecognized in these patients and may be overlooked
In 2001, Frost67 highlighted that the activities super- by providers, particularly when there are multiple sources
vised by SLPs overlap with those facilitated by occupa- of pain.82,83 Kalichman et al84 estimate that the prevalence
tional therapists insofar as eating or feeding being an ADL of myofascial pain syndrome (MPS) varies between 11%
task. The clear distinction is that occupational therapists and 45% among these patients depending on cancer type.
specifically addressed the ability to get the food into the It is important for practitioners and patients with cancer
mouth whereas SLPs addressed what occurs between the to be informed that treating MPS can reduce pain levels
lips and the stomach. Examples of maneuvers used by SLPs and improve quality of life and function.84 Massage for

18 Montagnini et al Rehabilitation Oncology

Copyright © 2020 Academy of Oncologic Physical Therapy, APTA. Unauthorized reproduction of this article is prohibited.
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