Patients with life-limiting illnesses and who may be receiving hospice or palliative care services experience progressive debility as evidenced by high levels of functional loss, increased dependency with activities of daily living (ADL), and mobility dysfunction.1,2 Disability results from multiple factors such as deconditioning, muscle fatigue, sarcopenia from direct tumor effects, malnutrition, depression, complications from therapies, bowel and bladder dysfunction, uncontrolled pain, thromboembolic disease, neurologic dysfunction, musculoskeletal deficits, and active concurrent illnesses, among others.3,4 Therefore, physical disability affects many aspects of life, resulting in depressed mood, increased caregiver needs, overall poor quality of life, and greater need for institutionalization.3–5 Physical strength, hours spent in bed, and the ability to do what one wants are invaluable indicators of quality of life for many patients with cancer and their families.4–7 Maintaining the highest level of functional abilities, especially mobility, through rehabilitation therapies is one of the most fulfilling goals for this population. However, these services are underutilized despite the growing body of literature supporting its benefits. The concept of rehabilitation in patients receiving hospice or palliative care would seem paradoxical. However, in reality, rehabilitation is highly appropriate for these patients if functional improvement is within their goals. Rehabilitation strategies can reduce the burden of care for families and caregivers. They also improve patients' quality of life and satisfaction of care and reduce distressing symptoms such as pain and anxiety.1,2,8–10 The main goal is therefore to help the patient live a good life regardless of physical disabilities and impairments. Rehabilitation in both hospice and palliative care settings can potentially help patients regain control over many aspects of their lives and to remain as functionally independent and productive as possible.11–13
- To define the role of rehabilitation in the hospice and palliative care settings;
- To discuss key points in the assessment and planning of palliative rehabilitation; and
- To provide an overview of the roles of physical therapy, occupational therapy, speech-language pathology, and massage therapy in facilitating rehabilitation in the hospice and palliative care settings.
OVERVIEW OF REHABILITATION AND PALLIATIVE MEDICINE
The specialties of rehabilitation medicine and palliative medicine play critical roles in the care of patients with cancer along the continuum. Both specialties recognize the health-related quality-of-life effects of physical and psychological impairments.14,15 Furthermore, they both use interprofessional teams to regularly evaluate patients' medical, physical, cognitive, and functional status. They also ensure that patients' goals remain relevant while concurring disease or symptom-directed therapies exist. Both fields of medicine help develop applicable measures that assess constructs valued by patients and their caregivers such as symptom control and function. Rehabilitation and palliative medicine share a common goal of using multimodal approaches to managing pain and other symptoms that could be debilitating for patients and their caregivers.14,15
There is a clear distinction between conventional or traditional rehabilitation and palliative rehabilitation.15 Patients without serious life-limiting illnesses can benefit from conventional rehabilitation with the hope or expectation that they will be able to recover and go back to their previous level of functional state (if possible) despite their impairments or disabilities.
DEFINITION OF PALLIATIVE REHABILITATION
Rehabilitation in the palliative and hospice care settings has gained increased recognition in the literature. It is defined as a process of helping a person to reach the fullest physical, psychological, social, vocational, and educational potential consistent with his or her physiological or anatomical impairment, environmental limitations, desires, and life plans.2,16Impairment is defined as the loss or abnormality of psychological, physiological, or anatomical structure or function resulting from pathology, whereas disability refers to any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being.16 Cheville et al17 in 2017 proposed a definition that in the advanced cancer population, palliative rehabilitation is function-directed care delivered in partnership with other clinical disciplines and aligned with the values of the patients who have serious and often incurable diseases in the context punctuated by intense and dynamic symptoms, psychological distress, and medical morbidity to realize potentially time-limited trials.17 Moreover, the concept of palliative rehabilitation was historically derived from Dietz's concept of cancer rehabilitation according to disease staging.18,19Preventive rehabilitation attempts to preclude or mitigate functional morbidity caused by cancer or its treatment. Restorative rehabilitation refers to the effort to return patients to their premorbid functional status when little or no long-term impairment is anticipated. Supportive rehabilitation attempts to maximize function after permanent impairments caused 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 comfort and emotional support.
EVIDENCE-BASED APPROACH TO PALLIATIVE REHABILITATION
Data supporting the role of rehabilitation in hospice and palliative care have grown steadily since the sentinel study of Yoshioka10 in 1994. There is now official recognition of the benefits of rehabilitation in this population (Table 1).
TABLE 1 -
Summary of Selected Evidence-Based Literature on Palliative Rehabilitation
||Intervention and Outcome Measures
||Retrospective case series in a hospice facility in Japan
||301 patients with terminal cancer
||Rehabilitation within 6 mo of death
Therapeutic exercises for range of motion, balance, muscle strength
- ADL training
- Bed exercises
- Endurance training
- Chest PT
- Swallowing exercises
- Intermittent pneumatic compression
- Use of brace, sling, and splint
- Comfortable or relaxed positioning with pillows
BI scores before and after rehabilitation
|63% patients considered rehabilitation procedures to be effective
27% average improvement in ADL scores
Improvement in the BI score from 12.4 prerehabilitation to 19.9 postrehabilitation
Almost all patients experienced some relief from pain, dyspnea, leg edema, and constipation
Families expressed satisfaction with the program
|Porock et al20
||Experimental pre- and posttest design in a home hospice program in Australia
||9 patients enrolled in hospice (mean age 59 y)
||28-d exercise intervention
Symptom Distress Scale
Graham and Longman's QOL Scale
|Overall minimal fluctuation in the mean MFI subscale scores between days 0 and 28
The general fatigue score remained the same
HADS trended toward decreased anxiety levels
Patients enjoyed the exercise, and fatigue was not worse
Improvement in overall QOL scores
|Oldervoll et al21
||Phase II interventional (exercise) study in a palliative care unit and an oncological outpatient clinic in Norway
||63 patients receiving hospice and palliative care
||6 wk of structured exercise program supervised by a physical therapist
Exercise consisted of 10 min of warm-up session, 30 min of circuit training in 6 stations, and 10 min of relaxation/stretching session
Measurements for physical performance and balance:
Six-Minute Walk Test
Timed repeated sit to stand
Measurement for fatigue:
Measurement for QOL:
|34 patients completed the study
Significant increase in walking length by 29 m from pre- to posttest (P = .007)
Significant decrease in timed sit to stand from 5.1 to 4.1 s (P = .001)
Measuring balance by functional reach improved from 30.4 to 32.8 cm (P = .07)
The fatigue score improved (P = .06)
Dyspnea reduced (P = .006)
Global QOL remained stable
Role and social functioning improved from 50 to 63 points (P = .02) and from 55 to 65 points (P = .008), respectively
|Sabers et al22
||Prospective study at the Mayo Clinic in Rochester, Minnesota
||299 patients hospitalized with cancer
Barthel Mobility Index (BI)
QOL questionnaire at enrollment and completion of the program
|189 completed the study
Significant improvement in KPS and BI scores at completion of the program
Improvement in multiple QOL parameters
Nearly half of the patients (49%) believed they benefited from rehabilitation
|Marciniak et al23
||Retrospective case series in a university-affiliated rehabilitation hospital in the United States
||159 patients with functional impairments related to cancer or its treatment
||Comprehensive inpatient rehabilitation
|Significant functional gains made between admission (mean FIM score = 4.29) and discharge (mean FIM score = 56) (P < .001)
The presence of metastatic disease did not influence functional outcome
Those receiving radiation therapy made larger functional gains
|Montagnini et al24
||Retrospective chart review in a hospital-based palliative care unit at a Veterans Affairs Medical Center
||100 consecutive patients receiving palliative care and who were discharged from a palliative care unit
||Completion of inpatient PT program
ADL scores on admission, at 2 wk, and upon completion of the PT program
|PT benefited 56% of patients, with notable improvement in ADL scores
A higher albumin level was correlated with functional improvement
|Scialla et al25
||Retrospective chart review in a rehabilitation hospital in Scranton, Pennsylvania
||110 patients with cancer and who were older than 60 y
||Comprehensive multidisciplinary inpatient rehabilitation
|Improvement in the median total FIM score from admission (71) to discharge (88)
Improvements in physical function, asthenia, and cognition
|Huang et al26
||Case-controlled, retrospective study in a tertiary care medical center inpatient rehabilitation unit
||63 patients with brain tumor who were matched with 63 patients with acute stroke according to age, sex, and location of lesion
||Acute inpatient rehabilitation
FIM scores on admission and discharge and measured in 3 subsets, namely, ADL, mobility, and cognition
FIM change and FIM efficiency were also calculated
|No significant difference found in both populations in regard to total admission FIM, total discharge FIM, change in total FIM, or FIM efficiency
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 rehabilitation hospital in Scranton, Pennsylvania
||200 patients with cancer and who were older than 18 y
||Comprehensive multidisciplinary inpatient rehabilitation
FIM-MM and FIM-CM
|All patients made significant gains in motor function regardless of the diagnostic group, the rehabilitation impairment group, the 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
|Pyszora et al28
||60 patients with advanced cancer receiving palliative care
||Treatment group: 30-min PT sessions (active exercises, myofascial release, and proprioceptive neuromuscular facilitation techniques
Control group: No exercise
Brief Fatigue Inventory
Edmonton Symptom Assessment Scale satisfaction scores
|Significant reduction in fatigue scores
Improvement in general well-being
Reduction in symptoms (pain, drowsiness, lack of appetite, depression)
Positive satisfaction scores
|Schuler et al29
||77 patients with advanced cancer
||Physical exercise program and its effect on fatigue at 12 and 24 wk after baseline
Group A: Treatment as usual
Group B: Structured sports program
Group C: Additional ambulatory PT
General fatigue using the MFI
|Rate of severe general fatigue significantly reduced with group C
All MFI dimensions increased in group A
Patients with self-directed exercise program and additional PT supervision had more appreciable benefit on fatigue reduction
|Paramanandam and Dunn30
||Systematic review looking at the effect of exercises on cancer-related fatigue in lung cancer (PICOS format), period of 2001-2012
Databases: CENTRAL, PubMed, EMBASE, CINAHL, SPORTDiscus, AMED, Web of Science
|10 articles involving adults with lung cancer with or at risk for lung cancer fatigue
||Physical exercise (aerobic, resistance, mixed, flexibility)
Fatigue score using the EORTC-QOL questionnaire
|Nearly all studies except one (9/10) did not show decline in function for patients who exercised
7/10 studies showed that exercise intervention is safe and feasible
Limitation: Studies are small
|Salakari et al31
||Systematic review using Fink's model of RCTs within the period of 2009-2014
Databases: MEDLINE, PubMed, Cochrane
AMSTAR method (A MeaSurement Tool to Assess systematic Reviews)
|13 RCTs (1169 participants), 7 patients with advanced cancer
||Physical exercise and massage among patients with advanced cancer
Symptom control (pain, mood, fatigue)
|Exercise was associated with significant improvement in general well-being and QOL
Rehabilitation had positive effects on fatigue, general condition, mood, and cancer coping
Home-based exercise programs improved mobility and sleep quality and reduced fatigue
|Jensen et al32
||Retrospective study in a specialized palliative care unit of a university hospital in Hamburg, Germany, from 2009 to 2012
||All consecutive patients with terminal cancer treated in a palliative care inpatient ward during a 3.5-y period were included (n = 572)
||Physical exercise, breathing techniques, relaxation therapy, positioning, lymphedema treatment
||93% of patients with terminal cancer were able to perform physical exercise at least once during their hospital stay
Physical exercise was feasible in 54% of the 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 younger cohort to receive exercise instructions
|Putt et al33
||Systematic review (period of 1994-2015) using the following databases (CINAHL PubMed, MEDLINE, Cochrane, PEDro, Journal of Palliative Care, Google scholar, and American Journal of Hospice and Palliative Medicine
||13 qualitative articles
||PT interventions (strengthening, therapeutic exercise, caregiver education, balance and fall prevention, transfer training, etc) in the palliative care setting
Critical Appraisal Skills Program
|Support the utilization of PT in the palliative care setting
Reduced musculoskeletal pain
Improvement in mobility and ADL tasks
Positive effect of PT on the patient's physical, emotional, and social well-being
Positive caregiver satisfaction
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; MFI, Multidimensional Fatigue Inventory; PT, physical therapy; QOL, quality of life; RCT, randomized controlled trial.
Yoshioka's10 study documented that hospice patients who received rehabilitation had improved quality of life and mobility and reduced symptoms such as pain, dyspnea, constipation, and leg edema. About 63% of patients considered rehabilitation modalities to be effective.10 Subsequent studies by Porock et al20 and Oldervoll et al21 revealed that structured physical exercise programs reduced fatigue and anxiety and improved quality of life in patients receiving hospice and palliative care services.
Two separate but related studies by Sabers et al22 and Marciniak et al23 used a comprehensive inpatient rehabilitation approach for patients with cancer. The former showed significant reduction in pain and improvement in mood, mobility, quality of life in the last 3 days, and comfort with going home and directing care. The Marciniak et al23 study highlighted that the presence of metastatic disease did not influence functional outcomes. Patients with cancer who received radiation therapy most notably made larger functional improvements.23 Montagnini et al24 supported findings that inpatient physical therapy benefited more than half of patients receiving palliative care. Their ADL scores improved within 2 weeks and after completion of the program. Furthermore, patients with higher albumin levels were correlated with greater functional improvement.24
Scialla and colleagues25 retrospectively studied older patients with cancer asthenia who underwent comprehensive multidisciplinary inpatient rehabilitation. The rehabilitation goal for all patients was to maximize their functional status to a level allowed by their impairments. Using the Functional Independence Measure (FIM) for Motor Function (FIM-MM) and Cognition (FIM-CM), a striking improvement in the median total FIM score from admission to discharge was observed.25 In contrast, the Huang and colleagues26 case-controlled retrospective study concluded that patients with brain tumors can achieve positive outcomes and rates of discharge comparable with patients with stroke. Furthermore, in the Cole et al27 study of 200 patients with cancer who underwent a comprehensive inpatient rehabilitation program, most reported significant gains in motor and cognitive functions.
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 the Brief Fatigue Inventory, the treatment group had lower scores of fatigue and its effect on daily functioning. Moreover, there were notable gains in general well-being and reduced intensity of distressing symptoms such as pain.28 Another study by Schuler et al29 looked into the effect of a structured individual sports program on fatigue among patients with advanced cancer. This was a randomized controlled trial (RCT) that enrolled 77 patients, the majority of whom were receiving palliative intent to treat, who participated 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 training and endurance such as walking, running, and bicycling. The exercises that were conducted mostly at home occurred 5 times per week for 12 weeks. The trial demonstrated the positive effects of physical exercise on cancer and treatment-related symptoms such as severe fatigue.29 Furthermore, the study underscored the benefit of exercise among patients with cancer receiving curative and/or palliative 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 cancer underscored that it led to significant improvement in general well-being and quality of life.31 Overall, rehabilitation showed positive effects on fatigue, general condition, mood, and coping with cancer.31
Jensen et al32 systematically studied the feasibility of physical therapy in 528 patients with terminal illness. Results showed that physical therapy is practical and attainable 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 exercise, balance and fall prevention training, and massage, among others, in the care of patients receiving palliative and hospice care. Moreover, there are psychological benefits experienced by patients who are dying. These include positive mood and improved function and overall quality of life.33
Although the studies listed in Table 1 show numerous benefits of rehabilitation strategies in the hospice and palliative care settings, it is important to emphasize that physical and cognitive functions change dramatically on a daily basis. It is therefore prudent to review physical therapy goals and to customize interventions on a regular basis. Rehabilitation therapists will have to be flexible with the treatment plan while respecting patient choices and acknowledging frequent interruptions in day-to-day therapies.
PLANNING FOR PALLIATIVE REHABILITATION
In general, the rehabilitation plan is designed in collaboration with members from multiple disciplines including physical therapy, occupational therapy, speech-language pathology, psychology, nursing, nutrition, respiratory therapy, recreational therapy, case management, pharmacy, social work, chaplaincy, and patient care associates, to name a few. This collaboration is coordinated by a physiatrist experienced in hospice and palliative medicine.34 The plan should be individualized and tailored on the basis of the patient's stage of serious illness, overall prognosis, potential to regain function, and desire and motivation to participate in the program.
Rehabilitation can be provided in a number of settings including inpatient, outpatient, and home-based venues.35 Inpatient acute rehabilitation is designed for patients who are able to tolerate at least 3 hours of daily therapy 5 times per week. Subacute inpatient rehabilitation offers coordinated interprofessional services to patients who can tolerate at least 1 hour of therapy each day 5 times per week. Outpatient rehabilitation offers comprehensive interprofessional or single rehabilitation services for patients residing in the community. Most home care agencies can provide physical therapy, occupational therapy, speech-language pathology, social work, and skilled nursing care to patients who are homebound. Hospice programs may occasionally provide rehabilitation services in the inpatient setting as well as the home environment if aligned with goals of care and part of the comprehensive hospice plan of care.36 Financial coverage for these rehabilitation services is obtained through Medicare, Medicaid, and most private insurance companies or third-party payers according to their specific reimbursement criteria. Patients enrolled in the Medicare hospice benefit are eligible to receive them without additional cost.36,37 Medicare-certified hospice agencies are reimbursed on a daily rate for 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 sessions. Patients and families will have to explore out-of-pocket expense to continue more rehabilitation services at home or outpatient. Under the Medicare hospice benefit, rehabilitation resources covered include safety training, symptom control, and assistance with ADL. The financial reimbursement for patients receiving palliative care is not as well defined by medical insurances. To mitigate access issues, clinicians and rehabilitation specialists might consider a 1-time evaluation during a patient's inpatient stay so that both the patient and caregivers are educated on helpful rehabilitation techniques to be continued at home or in an outpatient setting. For patients receiving home-based palliative care, rehabilitation therapies may be offered through Medicare Part A home care program as a skilled need rather than a separate or specific coverage for palliative rehabilitation. Furthermore, depending on the severity of the serious illness and the level of functionality, patients might benefit from conventional rehabilitation in subacute, home, and outpatient settings before formally enrolling in hospice services at home or in a facility. Medicare Part A and most private insurances will reimburse for conventional rehabilitation.37
Discharge planning is a vital part of the rehabilitation plan. This is achieved through a dynamic team-based approach that takes into account the patient's progress toward meeting the preestablished rehabilitation goals, the degree of caregiver support postrehabilitation, and the appropriate setting for further care.37 Frequently, the patient is followed by the entire team including therapies until death or transition to and from palliative care or hospice care. Patients with serious illness who are discharged from the hospital and later enrolled in hospice and have the desire to continue some degree of functionality could benefit from palliative rehabilitation regardless of the hospice venue (eg, home, acute inpatient, long-term care, assisted living). Rehabilitation therapists who work with hospice can provide a limited number of visits to patients. This is carried out typically as a 1-time to a few times visit(s) depending on patient mood, degree of impairment, and capacity to participate in meaningful therapy sessions on a daily basis. The provision of palliative rehabilitation services must be included in the comprehensive hospice plan of care. Patients on hospice may choose to disenroll from hospice should they feel the need to benefit more from intensive rehabilitation such as consideration of further skilled home care, outpatient therapy, and subacute rehabilitation.38 In the same token, patients with serious illness undergoing subacute rehabilitation may be discharged from this level of care if they no longer meet criteria as a result of progression of disease, more disability, and lack of motivation to do so. Following discharge, they may be enrolled in hospice if aligned with their goals. The bottom line is that hospice care will work with patients and families to match their goals of care and will be flexible with the provision and/or revocation of hospice services.
Performing a comprehensive patient assessment is an essential component of rehabilitation planning. This will help determine the patient's previous level of functioning, potential for functional recovery, and capacity to participate in a rehabilitation program. Information on disease staging, previous and current treatments, life expectancy, comorbidities, pain and nonpain symptoms, medications, cognition, mood, nutrition, and physical function is necessary.39 The assessment of home and community support systems and financial resources is also taken into consideration.40 A complete physical examination with careful attention to the musculoskeletal and neurologic systems is essential in determining motor strength, joint flexibility, gait, coordination, and fall risk.37,39,40
Several functional assessment tools can be used to quantify and qualify function, mobility, endurance, and fall risk in patients receiving hospice and palliative care services (Table 2). These include the following:
- 1. The Karnofsky Performance Scale (KPS), originally developed for patients with cancer, provides a global evaluation of the patient's functional status. It is also a reliable tool for prognostication in hospice and palliative care. The KPS consists of a 100-point scale of general function corresponding to the patient's ability to live independently and/or the need for institutionalization.41
- 2. The Eastern Cooperative Oncologic Group Scale is a 5-point scale that quantifies a patient's ability to walk, care for self, and the need for dependence on others. It was developed for patients with cancer and is commonly used for prognostication in the hospice and palliative care settings.42
- 3. The Edmonton Functional Assessment Tool was originally designed and validated for the palliative care population. It consists of 2 parts, namely: part 1, which assesses communication, mental status, pain, respiratory function, sitting or standing balance, mobility, walking or wheelchair locomotion, ADL, fatigue, and motivation; and part 2, which pertains to a single overall rating of the patient's functional status.43,44
- 4. The Palliative Performance Scale (PPS) quantifies ambulation, activity level, self-care, oral intake, and level of consciousness. It is a reliable tool for determining survival in patients receiving hospice and palliative care services and can provide information on the patient's care needs.45 PPS scores are determined by reading horizontally at each level to find a “best fit” for the patient, which is then assigned as the %PPS score. The lower the score, the more disability there is.
- 5. The Katz Activities of Daily Living was originally developed for the frail geriatric population and is commonly used to evaluate physical function in patients receiving hospice and palliative care. It looks at 6 domains of function necessary for independent living including bathing, dressing, toileting, transferring, continence, and feeding, which are rated as dependent or independent.46 A score of 6 indicates full function, 4 indicates moderate impairment, and 2 or less indicates severe functional impairment.46
- 6. The Lawton Instrumental Activities of Daily Living evaluates 8 domains of function including medication management, telephone use, housekeeping, food preparation, laundry, financial management, transportation, and shopping.47 A summary score ranges from 0 (low function, dependent) to 8 (high function, independent).47
- 7. The Barthel Index quantifies a patient's capacity to independently perform 10 tasks including feeding, dressing, personal hygiene, bowel control, bladder control, wheelchair transfer to and from bed, toilet transfer, bathtub transfer, walking on level or being propelled by wheelchair, and ascending and descending stairs.48 Total possible scores range from 0 to 20, with lower scores indicating increased disability.48,49
- 8. The Functional Independence Measure is a comprehensive observer-rated scale that contains 18 items rated on a 7-level ordinal scale, with a score of 1 requiring total assistance and 7 with full independence.50 The items include self-care, sphincter control, mobility, locomotion, communication, and social cognition. It is a reliable and valid tool measuring functional outcomes in rehabilitation settings.50
TABLE 2 -
Functional Assessment Instruments
||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 (ECOG) Functional Index42
||Provides a general measure of function; useful for prognostication
5-point scale (0 = perfect health; 5 = death)
||Edmonton Functional Assessment Tool43,44
||Designed and validated for the palliative care population
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 Living (IADL)47
||Commonly used in geriatric populations; measures 8 domains of function; each domain is scored either 0 (impairment) or 1 (normal function)
||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
||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
||6-Minute Walk Test (6MWT)54
||Total distance (meters) walked in 6 min
For the assessment of fall risk, the Berg Balance Test51 and the Tinetti Assessment of Balance and Gait52 are commonly used.
- 9. The Berg Balance Scale is an observer-rated performance-based instrument that reviews 14 tasks related to changes in position from sitting to standing, transferring, reaching out with outstretched arm, turning, and standing on 1 foot. Scores of more than 41 indicate high functionality and independence.51
- 10. The Tinetti Assessment of Balance and Gait is an observer-rated performance-based instrument that contains 9 items for balance and 7 items for gait. The items for balance include sitting balance, rising, attempts to rise, immediate standing balance within 5 seconds, standing balance, being nudged, eyes closed, turning 360°, and sitting down. The items for gait include initiation of gait, step length and height, step symmetry, step continuity, path walked, trunk, and walking stance.52
- 11. The Timed Up and Go test is a performance-based instrument originally developed for older adults. The patient is asked to stand without using proximal muscles if possible from a sitting position and asked to walk 3 m forward and come back to a sitting position. The average normal time to complete the task is about 10 seconds. If the time is more than 20 seconds, then the patient has a higher risk of falling.53
- 12. The Six-Minute Walk Test is a self-paced measure of endurance in which the patient is scored on his or her ability to walk in 6 minutes. It is a useful measure of functional capacity and is widely used for measuring response in cardiac and pulmonary rehabilitation.54
ROLE OF PHYSICAL THERAPY
Physical therapists are integral members of the rehabilitation and palliative care teams.55 More specific interventions used by physical therapists include the use of physical modalities for pain control, provision of assistive equipment, environmental modification, education on energy conservation, and exercise.56 Examples of physical modalities used to manage pain include massage, heat, cold, ultrasound, transcutaneous electrical nerve stimulation, diathermy, manual lymphatic drainage, and soft-tissue mobilization.57 Physical therapists use assistive devices that are prescribed for ambulation, mobility, balance, pain, fatigue, weakness, joint instability, excessive skeletal loading, and elimination of weight-bearing on affected extremities. Orthotics can be helpful in enhancing joint stability and safety for patients with motor deficits. Palliative orthotic prescription is by and large often expensive, poorly tolerated by patients, and inconsistently covered by third-party payers. It is important therefore to determine whether it will enhance comfort. Environmental modification is a significant intervention by physical therapy. Some examples include placing a recliner on a platform to assist in transfer, having a high stool in the kitchen to reach a cupboard, and adjusting the height and arms of the chair to assist in transfer. Moreover, patient education is a key component of care. Patients are taught and trained in energy management and conservation such as monitoring of fatigue levels and guidance on rest periods. Physical therapists can also play an active role in caregiver education and support, including instructions on the use of equipment, good body mechanics, and utilization of strategies to prevent falls and maintain balance. Physical therapists are known to use therapeutic exercises in the maintenance of muscle strength, joint flexibility, range of motion, and balance. The positive effects of exercise in patients with advanced cancer include enhancements in the physiological and psychological functional parameters such as functional capacity, body composition, mood, self-esteem, quality of life, and distressing symptoms such as fatigue, nausea, pain, muscle spasm, and edema.58 Reconditioning programs for patients with advanced cancer include graded aerobic and stretching exercises to increase cardiopulmonary capacity and endurance.59 In addition, pulmonary rehabilitation programs for advanced lung cancer include interventions such as inspiratory muscle retraining, noninvasive mechanical ventilation, education on oxygen consumption, breathing techniques, postural drainage, management of secretions, and relaxation techniques.60 Physical therapists can use interventions normally applied with conventional rehabilitation albeit with more flexibility and creativity in matching treatment interventions with overall goals of care and day-to-day changes in physical and cognitive functions.
ROLE OF OCCUPATIONAL THERAPY
The National Council for Hospice and Specialist Palliative Care Services recognized the importance of occupational therapy in the rehabilitation of patients with cancer and palliative care patients.61 Occupational therapists conduct baseline assessments and provide treatment programs in several functional areas such as ADL, work tasks, self-esteem, employment, role-related tasks (eg, parenting, recreation), use of adaptive equipment (eg, reachers, rocker knives, one-handed cutting boards), coping skills, and discharge planning. More specific palliative interventions include home assessments for safety, equipment prescription, coaching in personal and domestic tasks, educational strategies for symptom control (eg, lymphedema and skin care), relaxation techniques, stress management, facilitation of social and leisure activities, and provision of support for caregivers.57,62 The study by Lee et al63 looked at the effectiveness of occupational therapy in promoting feeding independence through fine motor therapies among patients with end-stage cancer. Notable improvement in feeding independence was observed from baseline to week 1. This was sustainable up to 3 weeks. This improvement increased quality of life, promoted ADL function, and reduced overall functional debility.63 When receiving inpatient and home-based palliative care, occupational therapists assess the patients' physical and cognitive abilities to participate in therapy sessions on a regular basis. For patients enrolled in hospice, the emphasis of training will be on both patients' abilities to carry out functional tasks related to their goals and the training of caregivers who will continue further rehabilitation of the patients at home once the formal hospice rehabilitation visits are completed.
ROLE OF SPEECH-LANGUAGE PATHOLOGY
In general, there are 4 roles practiced by the speech-language pathologists (SLPs) at the end of life.64 First, they provide consultations to patients, families, and the hospice team in the areas of communication, cognition, and swallowing functions. Second, they develop strategies in the areas of communication skills to support patients' role in decision making, maintenance of social closeness, and assistance with patients approaching end of life in terms of their fulfillment of functional goals.65,66 Third, they assist in optimizing function related to dysphagia symptoms, thereby improving patient comfort and satisfaction and promoting positive feeding interactions with family members. Fourth, they communicate with the hospice and palliative care teams in the provision and acknowledgment of feedback related to overall patient care. Speech-language therapy also addresses functional tasks involving the oral-pharyngeal-laryngeal function and the cognitive components in the communication process.67
In 2001, Frost67 highlighted that the activities supervised by SLPs overlap with those facilitated by occupational therapists insofar as eating or feeding being an ADL task. The clear distinction is that occupational therapists specifically addressed the ability to get the food into the mouth whereas SLPs addressed what occurs between the lips and the stomach. Examples of maneuvers used by SLPs include lip closure, tongue use, pocketing, effective mastication, epiglottal use, esophageal tone, and contraction. For patients experiencing dysphagia, simple remedies include modifying position, cuing, bolus modifications of food consistencies and bite sizes, and swallowing maneuvers such as dipping chin, additional dry swallows, and many more.
ROLE OF MASSAGE THERAPY
In patients with advanced cancer, moderate pressure effleurage (a form of Swedish massage) is used often and can be combined with myofascial release, neuromuscular therapy, friction, and/or compression to treat specific problem areas such as shoulder pain.68 Techniques may need to be modified, pressure-reduced, or avoided when patients have metastases, low platelet counts, skin breakdown, deep vein thrombosis, severe cachexia, and the presence of medical devices.69 Massage performed by licensed and trained massage therapists or physical therapists is safe and rarely leads to adverse events.70,71 Two-thirds of patients with advanced, metastatic, or terminal diseases have pain and other associated symptoms such as fatigue, insomnia, and shortness of breath.72,73 Studies support the role of massage therapy in decreasing anxiety and improving mood in patients with advanced cancer and those receiving palliative care.74,75 In this instance, massage can induce a state of relaxation and peacefulness that can improve overall well-being and promote better sleep.69,71,75,76 Furthermore, soft or gentle massage can help a patient find inner peace, dignity, and a sense of hope, thereby supporting the emotional and spiritual dimensions as well.77 Massage can also provide a temporary respite from suffering, especially if the person is socially isolated or confined to the bed. Although research studies on massage as an adjuvant for cancer pain have been limited by small sample size and study design, 2 recent meta-analyses have concluded that massage has a beneficial effect on the relief of cancer pain, including pain experienced by patients with metastatic bone disease.78–80 It is important to underscore that studies examining the effect of massage on pain control among patients with cancer have not distinguished the different types of pain or specific sources of pain and have used protocols that do not focus on specific pain areas. According to the 2016 data of the Centers for Disease Control and Prevention, about 20% of Americans have chronic pain that increases in prevalence with advancing age.81 As a result, patients with cancer may experience other sources of pain besides their primary cancer diagnosis such as concurrent arthritis or rotator cuff injuries. Furthermore, myofascial pain is underrecognized in these patients and may be overlooked by providers, particularly when there are multiple sources of pain.82,83 Kalichman et al84 estimate that the prevalence of myofascial pain syndrome (MPS) varies between 11% and 45% among these patients depending on cancer type. It is important for practitioners and patients with cancer to be informed that treating MPS can reduce pain levels and improve quality of life and function.84 Massage for MPS reduces muscle tension, lengthens muscles, releases myofascial trigger points, and increases range of motion.85
Overall, massage therapy is a safe, effective, and acceptable modality to treat pain and associated symptoms of patients experiencing life-limiting illnesses. It can be a valuable addition to a palliative rehabilitation plan as its effect goes beyond the physical nature of the symptoms.
There is significant debility experienced by patients with advanced cancer and those receiving hospice and palliative care. Disability results from multiple factors such as deconditioning, muscle fatigue, sarcopenia from direct tumor effects, malnutrition, depression, complications from therapies, bowel and bladder dysfunction, poorly controlled pain, thromboembolic disease, neurologic dysfunction, musculoskeletal deficits, and active coexisting illnesses, among others. This leads to mood disorders, caregiver burden, heightened health resource utilization, increased rates of institutionalization, and overall poorer quality of life. Maintaining the highest level of functional abilities (eg, mobility) through rehabilitation therapies is one of the most fulfilling goals for this patient population. There is a growing body of literature supporting the role of rehabilitation in this population. The interventions are matched with patients' overall functional goals and dynamic physical and cognitive changes as a result of disease progression, treatment complications, and distressing symptoms. Rehabilitation strategies can reduce the burden of care for families and caregivers, improve patient's overall quality of life and satisfaction of care, and reduce symptoms such as pain and anxiety. With the collaborative nature of the rehabilitation specialists, a multidimensional and holistic approach to care is thereby carried out.
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