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Rehabilitation and palliative care 

Rehabilitation and palliative care
Chapter:
Rehabilitation and palliative care
Author(s):

Donna J. Wilson

and Kathleen Michael

DOI:
10.1093/med/9780199332342.003.0056
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Subscriber: null; date: 19 January 2019

I was diagnosed with stage 4 breast cancer 14 years ago. I have been on multiple chemotherapy drugs. Maintaining my muscular strength gives me the energy and self-confidence to maintain a quality of life and enjoy my family.

A patient

Key points

  • Rehabilitation principles are applicable to palliative care to enhance quality of life.

  • Interdisciplinary care is a key concept in rehabilitation.

  • Rehabilitation in palliative care can prevent disability and complications.

  • Mobility and self-care are the critical components of physical functioning in palliative care.

Case study

Ann, a 59-year-old woman with metastatic breast cancer

Ann was diagnosed with breast cancer at the age of 36. She had a right mastectomy with reconstruction followed by chemotherapy and radiation therapy. She tolerated the treatment and continued working in advertising. She was energetic and outgoing and enjoyed music and the arts. Ann was previously overweight (275 pounds) up to the age of 25 but then lost the weight and considered sugar toxic. After the scare of breast cancer, she started walking and going to the gym 2 times a week. She was happy and dating when, 5 years later, at a routine check-up she was diagnosed with metastatic disease to her sternum. She once again had surgery to remove the nodule on her sternum and then began an aromatase inhibitor. She was then diagnosed with osteoporosis. Ann had met the “man of her dreams,” and he was not concerned about her diagnosis and asked her to marry him. Ann started exercising more and added weight-bearing and muscle-strengthening exercises to her routine. She married a year later. Ann continued to be monitored closely for recurrent disease but was enjoying life.

Ten years after her initial diagnosis, her tumor markers were on the rise and additional testing revealed nodules in her lungs and liver. For the next several years she was treated with a variety of chemotherapy agents, but managed to work full-time and to enjoy married life. Ann found that going to the gym was therapeutic, as her body felt stronger, her self-esteem improved, and the stress associated with chronic treatment was bearable. She was taking control through exercise and mind-body therapies during this time of stress and illness.

After several years of dealing with metastatic breast cancer, she had a seizure at work. She was diagnosed with metastatic disease to her brain and required a craniotomy and brain radiation leaving her with right-hand weakness. She took early retirement from work but still focused on the goal of survival. A psychiatrist was added to her team to help her with stress, anxiety, and fears of dying, and a physical therapist to help with her right-arm weakness. Over the next year she and her husband took a European trip, and continued to enjoy the theater and family visiting.

Ann now presented with shortness of breath requiring a chest Pleurx catheter for drainage. Her overall condition was deteriorating with complaints of increasing fatigue and dyspnea. She continued to do upper body flexibility exercises and breathing exercises. Ann reported that the movement decreased her generalized body pain and discomfort and the deep breathing exercises gave her some relief. She continued to fight for continued life, requesting the rehabilitation team to assist her to walk and to remain physically active. The palliative care team helped to maintain her comfort and independence and to enjoy the love of her husband. This case study demonstrates the primary principles of rehabilitation nursing care throughout a disease trajectory.

This chapter will apply the concepts of physical activity to palliative care across settings. A physical activity program for each patient should be presented at the time of diagnosis and extend to end-of-life care. Even when it is not possible to cure or reverse a disease processes, or to restore a previous level of functioning and independence, a rehabilitative approach to nursing care adds quality to the experience of living until life’s completion. The language of rehabilitation nursing is a language shared with those who practice palliative care. Feelings of self-confidence, independence, hope, human dignity, and autonomy are all influenced by an individually tailored program of rehabilitation.

Rehabilitation nursing

Nursing in any context concerns itself with adaptation. As life proceeds to its end, adaptation to a new state allows people to remain whole: interact with their environment, to experience human relationships, and to achieve personally meaningful goals. Nurses find themselves at work in every phase of growth, development, and dying, as individuals strive to adapt across the continuum of life.

Rehabilitation nurses care for persons with incurable progressive disease states in a variety of settings.1 Whether care is patient-provider or facility-centered, the merging of rehabilitation and palliative nursing approaches are evident. Rehabilitation nurses are in a key position to motivate, providing hope, physical and psychologically, to patients and their caregivers to improve the patient’s quality of life.

Just as all nurses incorporate aspects of palliative care into their daily care of patients so they also incorporate aspects of rehabilitation. In the assessment, planning, implementation, and evaluation of nursing care are the concepts of independence and interdependence, self-care, coping, and quality of life.1,2 Although the focus is on physical activity, fundamental to this practice is the acceptance of varieties of life experiences, including those at life’s end. The true challenge in a rehabilitation program is to motivate and change or maintain the patient’s physical performance to the best of their ability and to help them to adapt to a changing physical situation. Again the goal is to enhance self-esteem and quality of life.

Patients can lose 10% of their muscle strength during a week of bedrest. There are also many problems related to inactivity such as impaired bowel or bladder function, deep vein thrombosis and poor balance from muscular weakness. To minimize these complications nurses need to encourage patients to do some movement each day, however limited, such as walking if possible, arm movements, or chair or bed exercises. Teaching patients to coordinate their breathing with each movement will improve their performance. Breathing exercises provide increased lung capacity, calm the mind and body, and activate targeted muscles. Breathing exercises with arm or leg movements do not require any equipment and can be done anywhere (including in bed) at anytime.

Physical activity in advanced disease and the effects on symptom control

The literature demonstrates the benefits of physical activity on patients with advanced-stage cancer. Physical activity is defined as any bodily movement produced by the skeletal muscles and requires more energy than resting.

The benefits of physical activity in this population of patients is to strengthen bones and muscles, improve mental health, improve their ability to do daily activities, prevent falls, and possibly even improve survival. Physical activity is the one intervention that will address the needs of the palliative patient. The most common side effects of cancer treatment are fatigue and dyspnea. These symptoms will interfere with normal activities of daily living. Patients who complain of fatigue and dyspnea also complain of generalized weakness, anxiety, depression, poor balance, and social isolation.

Rehabilitation/integrative techniques can prevent disability and complications in advanced disease. These techniques or strategies include flexibility training, walking aerobics, weight-bearing exercises using elastic bands or hand weights, yoga, and stretching. Massage therapy is an integrative technique providing touch to the soft tissues of the body and can also be part of rehabilitation. It provides comfort, relaxation, reduced muscular tension, decreased pain, and improved circulation and increases flexibility, thus enhancing a patient’s physical activity. A randomized trial with 3 interventions, massage, a nontouching intervention, and usual care for patients with metastatic cancer demonstrated patients in the massage group had beneficial effects of improved pain control and quality of sleep.3,4

Research in exercise programs

Research has demonstrated that exercise is an effective nonpharmacological therapy for managing fatigue, dyspnea, mobility, and self-care. A low to moderate intensity exercise program for patients and family members can be designed in an acute, subacute, long-term, or hospice care setting. Chair aerobics, chair yoga, and chair pilates include breathing exercises, stretching, arm and leg movements for flexibility, light weight training, and chair squats. These nonstressful programs help to reconnect the body and brain, deepen breathing patterns, and improve confidence with movement and use core muscles to support the spine, improve posture, and decrease muscle tension.5 Chair exercises were documented to slow the decline of fatigue and dyspnea by improved muscular strength of the legs and chest wall muscles, thus improving quality of life in patients with severe lung disease.6 Pulmonary rehabilitation can reduce fatigue and dyspnea by improving muscle strength of the legs and chest wall, thus improving quality of life in patients with severe lung disease.6

The beneficial effects of physical fitness are physiological and psychological. The physiological effects include enhanced rest, better sleep patterns, improved flexibility and range of motion, improved muscular strength, and improved delivery of oxygen-rich blood to the brain and tissues, which reduces fatigue. The psychological effects include enhanced coping ability, reduced stress, improved self-confidence, mood elevation, sharpened mental functioning, and decreased depression. The benefits may seem small, but engaging the patient and family together in an exercise program decreases feelings of helplessness by maintaining some muscle strength and physical activity.7,8

Another approach to maintain quadricep muscle function is neuromuscular electrical stimulation (NMES).9 A controlled study of a home-based program was conducted with lung cancer patients. Many patients with lung cancer are deconditioned, presenting with muscle wasting. The pilot results were not significant, but more of the patients in the NMES group improved their strength as demonstrated in a walk and step test. The NMES was tolerated by the patients and may be a worthwhile treatment to preserve physical function, but further research is needed.

A pilot study by Oldervoll and colleagues provided an outpatient hospital-based structured exercise program for patients consisting of 1 hour twice a week for 6 weeks.10 The exercise program focused on strength-promoting activities such as aerobic exercises using large muscle groups in a standing or sitting position, bicycling, upper and lower body strength exercises, chair squats, balance, and optional abdominal exercises. At the end of the 6 weeks the patients reported decreased levels of fatigue and improved ability to do self-care activities and the response to physical activity played a role in maintaining independence.

A second study by Oldervoll consisted of a randomized controlled trial of 231 patients with a life expectancy of less than 2 years. Half the group exercised two times a week for 60 minutes and the other group received usual care. The exercise group demonstrated no change in the patients’ fatigue level, but their physical performance significantly improved in the 8 weeks of exercise.11 Physical activity is an excellent approach to maintain a patient’s physical performance with advanced disease.

Physical function assessment for palliative care patients has received little attention until recently. Helbostad and colleagues reviewed the literature for all existing instruments that had physical function items to assess this patient population is physical performance.12 In response to the dearth of such tools, the first steps for the development of a new instrument to measure the physical function of cancer patients receiving palliative care was described. This instrument is planned to identify and describe specific types of exercise beneficial to this population. An individualized exercise program can then be designed for the patient.

Complementary therapies as part of exercise programs in palliative care

Selman and colleagues evaluated two complementary therapies for palliative care—yoga and dance therapy.13 Eighteen patients participated in a once-a-week 6-week course. Ten patients participated in yoga, five in dance therapy (the Lebed Method), and three did both therapies. Fifteen of the 18 patients were receiving palliative care only. The yoga class included postures, breathing techniques, relaxation through visualization, and hand movements. The Lebed dance method consisted of a combination of movements and exercises focusing on the lymph system and flexibility for range of motion of both shoulders. Each of the programs could be performed in a standing or sitting position. In the precourse questionnaire, the patient concerns were mobility, breathing problems, arm/shoulder, neck/back problems, inability to relax, and anxiety. All of the concerns identified by patients in the preclass were self-reported as significantly improved in the postclass evaluations of both programs.

A randomized controlled clinical trial compared pranayama yogic breathing and usual care.14 The four yogic breathing techniques were taught in weekly classes during two consecutive cycles of chemotherapy. The control group received usual care. The results of teaching the four yogic breaths approached statistical significance for improved sleep disturbances, decreasing anxiety, and improving mental quality of life.

Dru yoga has been studied with palliative care patients.15 This is a gentle style of yoga with flowing movements that are combined with breath awareness, and relaxation. In a study of six patients, the patient attended a 40-minute weekly practice for 12 weeks. Even though their medical conditions were deteriorating, five of the patients reported physical, emotional, and mental improvement.

Although many of the research studies have small sample sizes, all of the movement-related exercise programs such as chair aerobics, yoga, chair pilates, or dance have reported positive outcomes for the palliative care patient. This suggests that noninvasive therapies that can decrease symptoms of fatigue, dyspnea, weakness, or anxiety in patients should be incorporated into the patient’s care plan early on in the treatment course. Physical activity, however minimal, appears to improve a patient’s quality of life throughout the disease trajectory including at the end of life. Lowe and colleagues reported patients with advanced cancer are very interested in physical activity programs.7

Understanding outcomes

In rehabilitation, there is a strong emphasis on the measurement of patient outcomes. Since the 1950s, many functional assessment instruments have been developed and used to help quantify the changes that occur in patients as a result of care and recovery. Some instruments to measure functional and physical outcomes are applicable to the assessment of patients within the last month of life.

There are more than a dozen functional outcome measurement tools in common use in rehabilitation settings in the United States and Canada. Measurement of self-care and mobility are central to rehabilitation, but the functions and behaviors required to lead a meaningful life are much broader. They may include cognitive, emotional, perceptual, social, and vocational function measurements as well.

For measuring function in the last 30 days of life, three scales may be particularly useful. The Rapid Disability Rating Scale (RDRS-2)16 has a broad scope to include items related to activities of daily living, mental capacity, dietary changes, continence, medications, and confinement to bed. The Health Assessment Questionnaire (HAQ)17 is a widely used instrument that summarizes the patients’ areas of major difficulty. The Functional Independence Measure (FIM) is an ordinal scale that quantifies 18 areas of physical and cognitive function in terms of burden of care.18,19 These scales are appropriate to palliative care because they focus on specific aspects of function that relate to patients’ independence. The scales may be used to determine whether interventions at the end of life serve to foster independence and function for as long as possible.

There is also strong interest in the field of rehabilitation in measuring patients’ perceptions of quality of life. When the measured domains are considered, the connection between rehabilitation and end-of life care becomes evident. Most of the measurements of quality of life have to do with physical, cognitive, social, and spiritual function, the chief concerns of the rehabilitation practitioner.

Outcome measurements matter because they can reveal a lot about the quality of life experienced by persons near the end of life. For example, by assessing at intervals, it is possible to determine how much function patients retain as they approach death. By identifying and measuring differences in this experience, it is possible to determine the essential interventions and care activities that contribute to the highest levels of functional independence until the end of life.

Further research is needed to:

  • Establish norms and indications for the application of rehabilitation in palliative care

  • Determine cost-effectiveness of rehabilitation interventions

  • Determine optimal time frames for providing rehabilitation services after the onset of disease

  • Define variables having the greatest impact on patient outcomes

Inpatient rehabilitation, long-term care, hospice, and pediatrics

Acute comprehensive inpatient rehabilitation units are set up in such a way that complex medical-surgical issues may be managed concurrently with the functional processes of comprehensive rehabilitation.20 For example, patients with metastatic cancer affecting their bones may have significant care needs related to mobility and activities of daily living, well addressed in an inpatient rehabilitation setting.

For many patients with terminal illness, the transition to an acute rehabilitation unit represents a crucial point in their healthcare experience. It is a time when the future comes into focus, and goals are defined based on the likely disease progression. Sometimes a short stay on an inpatient rehabilitation unit makes it possible for patients to return to a home setting, because of the gains in independent function that may be realized. Patients and family members may begin to face limited prognoses, decline in abilities, and changes in roles. Through an interdisciplinary therapeutic process, care needs are clarified, and skills and adaptation strategies are taught to patients and those who will care for them outside of the hospital.

Subacute rehabilitation facilities provide additional therapy activities, such as physical, occupational, or speech therapy, based on patient need, endurance, and tolerance. The pacing and amount of therapy are gauged according to individualized goals. As in comprehensive inpatient rehabilitation units, the aim is to facilitate improved physical function and as much independence as possible, even as the disease process moves the patient toward death. Patients with advanced disease who are too frail to participate in a full acute rehabilitation program may benefit from the slower-paced rehabilitation of a subacute setting.

Long-term care settings, such as skilled nursing facilities, are often places where lives are completed. Specialized geriatric facilities focus on the care needs of aging persons, often requiring specialized rehabilitation interventions. In both of these settings, rehabilitation nurses may plan and direct care delivery and make sure that patient and family concerns are kept in the forefront. Attention is paid to optimizing function and self-care, as well as addressing physical care issues.

Hospice settings either in the home or as an inpatient, may also provide a venue for a rehabilitative approach to end-of-life care. Careful planning of care to take into account limitations, yet promote function and autonomy, is a key factor in smoothing the transition to an inevitable death. Rehabilitative techniques and strategies make it easier for caregivers to manage increasing deficits, thereby protecting patient comfort and dignity through the dying process. Involving the family in the patient’s exercise or activity program decreases feelings of helplessness.

Pediatric rehabilitation is focused on guiding the development of children to minimize disability and handicaps that may result from physical or cognitive impairment. There are situations in pediatric rehabilitation in which palliative care comes into play, and efforts are directed toward enhancing the normal function of both patient and family through the course of disease. For example, the family members of a child with progressive neuromuscular disease may learn how to use adaptive devices to position the child in a wheelchair for comfort and social interaction as well as for physiological function.21

Insurance issues and case management

In the insurance industry and managed care systems, rehabilitation nurses have the opportunity to advocate for the needs of persons with disease or disability and to reduce barriers to their access to care and resources. Near the end of a terminal disease course, planning and resource management are essential to ensure optimal care without undue economic and emotional burdens to families. Case management is an expanding practice area for rehabilitation nurses, usually with multidisciplinary relationships. Because palliative care needs are unique to individuals and require coordination of the care across disciplines, usual or episodic patterns of delivery and resource use may prove inadequate. The implementation of an activity program in palliative care requires careful and compassionate guidance and evaluation, tailored to meet individual strengths, abilities, needs, and preferences.20,22 Enabling a kind of wellness to exist even at the point of death fits with the rehabilitation philosophy. Many rehabilitation nursing actions center on supporting physiological function and preventing complications, goals that are still appropriate at the end of life.

Finally, rehabilitation has long been concerned with understanding, enhancing, and measuring quality of life, whether related to physical, psychosocial, or spiritual domains.

The foundations of rehabilitation nursing practice

The real value of a rehabilitative approach to the nursing care of persons with declining health states lies in the foundations of rehabilitation nursing practice. The Association of Rehabilitation Nurses (ARN) believes cancer rehabilitation registered nurses’ role is to collaborate together to provide quality patient care. “The goal of rehabilitation nursing is to assist the individual with disability and chronic illness in the restoration and maintenance of maximal health.”23 This includes:

  • Attending to the full range of human experiences and responses to health and illness

  • Dealing with families coping with lifelong issues

  • Providing a holistic approach to care

  • Facilitating team dynamics and integration

  • Educating patients and their families to help them control and manage a wide range of challenges associated with chronic illness or disability

  • Forming partnerships with patients and other healthcare providers to attain the best possible outcomes

The hallmark of rehabilitation is interdisciplinary collaboration. The synergy of collaboration enhances the value of rehabilitation nursing interventions and ensures that patient needs are addressed from a variety of perspectives. Typically, the rehabilitation team consists of physicians with specialized training in physical medicine and rehabilitation; rehabilitation nurses; physical, occupational, speech, respiratory, and recreation therapists; exercise physiologists; dietitians; social workers; and others as required to address particular needs. Effective teamwork requires mutual understanding and synchrony of the roles and responsibilities of each member. When the rehabilitation team works in synergy, it serves patients and families across the continuum of life.

Rehabilitation principles applied to palliative care

The rehabilitation of patients with palliative care needs should begin as early as possible. As soon as functional deficits are observed or anticipated, appropriate consultation with members of the rehabilitation team should be initiated. Certain diagnoses, such as progressive neuromuscular diseases; malignancies affecting the brain, spinal cord, or skeletal system; organ failure; and many other conditions that result in functional impairments, should trigger mobilization of the rehabilitation team.

The goals of rehabilitation are to prevent secondary disability, to enhance the function of both affected and unaffected systems, and to help patients adapt to their physical and social environments by means of physical restoration and adaptive devices.38,39,40,41,42

Rehabilitation nursing strategies focus on:

  • Caring for whole persons in their social and physical environments

  • Preventing secondary disability

  • Enhancing function of both affected and unaffected systems

  • Facilitating use of adaptive strategies

  • Promoting quality of life

To illustrate the rehabilitation strategies as they may be applied in actual palliative nursing care situations, a variety of case studies are discussed in the following section. The stories serve to illuminate the role of rehabilitation nursing in palliative care and represent issues in common with many rehabilitation patients.

The case studies also reflect an approach to care—that of caring for whole person in their social and physical environments. Appreciating each person as a unique individual is extremely important to the rehabilitation process. Whereas it may be evident to rehabilitation professionals that certain goals and interventions would suit the patient’s needs, even more important is finding congruence with the patient’s own perceived and stated goals and values.

Case study

AD, a 60-year-old female with lung cancer

AD, age 60, was in her usual state of good health as a homemaker and enjoying traveling with her husband and playing cards and was a party organizer. She was slim and exercised 4 times a week even though exercise was not her favorite activity to do. She was much loved and known for giving of herself to others. AD went for her yearly routine physical. A chest X-ray showed a right upper lobe mass. A CT scan confirmed the mass and a fine needle aspiration biopsy was positive for adenocarcinoma non-small-cell lung cancer (NSCLC).

AD was completely asymptomatic. She had smoked occasionally in high school and had been exposed to second-hand smoke in her youth. At the time of surgery (a thoracotomy) she was found to have disease in four mediastinal lymph nodes. Following surgery, chemotherapy was started followed by radiotherapy. During her chemotherapy AD continued to exercise five times a week. Her exercises included breathing exercises, treadmill walking for 20 minutes, squats, upper body light-weight training, and stretching. She enjoyed doing the breathing exercises because she felt her lateral chest expand and felt the relaxation from the deep breathing. The breathing was performed slowly, rhythmically, and under control. She was taught to coordinate her breathing pattern with each exercise. When bending forward to do a stretch, she would blow out through her lips, bend forward and then breathe slowly to hold the stretch. She was reminded not to hold her breath with each exercise. AD frequently complained that her exercise workout was more painful than the chemotherapy. She refused pain medication, but continued with the exercise program saying that it maintained her strength and allowed her to enjoy dinner with family and friends each night. Her family and friends were her great support and were always there to push, encourage, and love her. They would sometimes call when she was on the treadmill. She would put the phone on speaker and chat for 20 minutes and the time went fast.

After completing chemotherapy and radiation, her chest X-ray was clear. One year later, however, she was found to have a second lesion on her lung. A surgical resection was performed, and her postop course was uneventful. AD continued her exercise program as she felt it kept her strong.

For several years her life was normal without evidence of disease. She maintained a 15-minute exercise program and treadmill walking. One evening, however, she had a seizure and was found to have lung cancer metastasis in the right occipital lobe of the brain. The tumor was resected, and this was followed by a course of whole brain radiotherapy and chemotherapy. She continued on her exercise program. The exercises were modified, but she wanted to be strong physically to enjoy dinners with her family. Maintaining strength of the large muscle groups was important for her. She was able to do chair squats with minimal assistance and walk outside with some support. AD’s family and the rehabilitation team adapted her activities of daily living to maintain as good a functional status as possible thus decreasing feelings of helplessness and hopelessness.

At this time AD demonstrated good muscle tone and strength of her arms and legs. She did, however, experience some chemotherapy-related peripheral neuropathy in her lower extremities. Reflexology provided some relief. She was alert and oriented but having difficulty with short-term memory loss. To reduce the stress from memory loss she would do things she enjoyed, such as looking at family pictures, listening to music, or talking with her closest friends. At this time she had a Karnofsky performance score of 80%.

Over the next several months AD was stable, until the cancer was found to have metastasized to her spine. She had increased back pain and muscle weakness but continued to walk with the use of a walker and continued to have dinner with family and friends. The rehabilitation team and family members adapted ADs exercise program to maintain the activities she requested, such as going to the bathroom and participating in family gatherings each evening. Many of the exercises were performed in bed and chair. Breathing exercises were performed 3–4 times a day with instruction and a family member or the home health aide providing gentle pressure to her lateral chest wall as she would breathe out to lengthen her exhalation. As she lost more control and ambulation became more difficult, her family and the rehab team were meticulous about her safety. It was during this time that the rehab team provided increased support for her family and friends discussing role changes, and coping with the loss of someone special.

AD’s husband expressed the following:

“No matter the stage of her illness there was always some level of physical activity you could do to maintain her independence. The exercises rebuilt her muscular strength and endurance, reduced fatigue, regained range of motion and flexibility, and relieved anxiety, anger, and stress while restoring her energy level and hope each day we shared together. Thank you.”

Case study

EW, a 60-year-old woman with a lung transplant

With a history of rapidly worsening chronic obstructive pulmonary disease, 60-year-old EW was faced with few options. As every breath became a struggle, she wondered how she could go on with her life and whether it was worth continuing the fight. She had already lost so much of what was important to her: mobility, independence, and social relationships. Now she found herself homebound, exhausted, and unable to carry on even a telephone conversation with friends and family she so cherished.

After much consultation and deliberation, she agreed that lung transplantation was the only course of treatment that would afford her the function and independence she believed made her life worthwhile. She received the transplanted lungs after a relatively short wait. But her expectations of returning to wellness were not to be fulfilled. EW began an extraordinarily complicated postoperative course and a journey that would lead her to a life’s end.

Initially, EW required prolonged ventilatory support. She struggled with infection and rejection of her new lungs. She experienced shock, sepsis, and distress; her medical records thickened with stories of heroics and near misses, of technology, of miracles, of persistent argument with fate. She had established with her family that she would want everything possible done to preserve her life, and thus the critical balancing act went on for months. Just as her condition seemed to be stabilizing, she had a massive stroke, resulting in dense hemiplegia and loss of speech/language function.

She was admitted to the inpatient rehabilitation medicine service to focus on mobility, self-care, and speech functions in order to help her to return home with her family. She progressed very slowly, with numerous complications related to her pulmonary status, immunosuppression, and cardiovascular deterioration.

A second stroke left her with even more-limited language and cognitive function. She required maximum assistance for all activities of daily living, and she ceased to make progress toward her rehabilitation goals. Her pulmonary function declined. Her family recognized that they would not be able to meet her care needs at home. Further evaluation of her lungs revealed that she had developed a lymphoma, for which, in her case, no treatment could be offered. Her prognosis plummeted, with the likelihood of death in a matter of weeks.

The focus of her rehabilitation care shifted. No longer would it be reasonable to expect her to reach the level of independence she would need to return home. A rigorous exercise program was not going to change the trajectory of her disease and in fact might drain her energies and contribute to more frustration and discomfort.

By talking with family and friends, the rehabilitation team learned that EW was strong willed, stubborn, and difficult, but deeply loved. She was seen as the matriarch of the family. For most of her adult life, she had balanced her responsibilities as a single parent with her work as a postal clerk. She was characterized as determined and cantankerous, impatient, critical, and quick to frustrate. Her family was close and extremely important to her. She had a wide circle of friends. Her four sons took turns visiting her in the hospital and sincerely wanted to get her back home again.

With these facts in mind, the rehabilitation team designed communications and interventions that took into account the personal traits and values that were particular to EW. They knew that she would have difficulty tolerating frustration. They knew that she would need to feel in control as much as possible. They also knew that involvement of her family and friends would be essential. They anticipated the effects of prolonged stress on the family unit and recognized the profound loss the family would sustain as her life concluded.

Rehabilitation nursing actions focused first on communication. Because of her dense aphasia, she was unable to verbalize her thoughts or feelings. Instead, she perseverated on one word, growing increasingly agitated when people were unable to understand her. A speech therapist was involved in setting up nonverbal methods of communication, such as picture boards.

As the nursing staff worked with EW, they tuned in to behavioral cues and expressions. Family members also helped in the interpretation of her attempts to communicate. Strategies for communication included:

  • Direct eye contact

  • Relaxed, unhurried approach

  • Slow, distinct phrases in normal tone of voice

  • One thought presented at a time

  • Time allowed to process information

  • Gestures to convey and clarify meaning

Efforts were directed toward maintaining EW’s comfort and dignity. Whenever possible, she was supported in making her own choices. Occupational and physical therapies concentrated on interventions that would promote her autonomy. Functional activities, such as dressing, grooming, and eating, allowed her opportunities to exercise her independence. Access to her physical environment was accomplished through the use of adaptive devices and wheelchair mobility skills. As her condition deteriorated, it was more difficult to ascertain her desires. Inclusion of family members became more important, both for carrying out her wishes as they knew them and for giving the family the active role in her care that they wanted.

Throughout the course of EW’s final illness, spiritual and psychosocial support were priorities. With her ability to communicate so severely impaired, her needs for support might have been misunderstood or overlooked. She was suddenly unable to serve as the source of stability and strength for her family, and roles and expectations were greatly changed. The rehabilitation nurses, the psychologist, the social worker, and the chaplain worked together to counsel and care for both patient and family.

When death came, the family described a mixture of feelings of relief, sorrow, and satisfaction. Through their sadness, they recognized the efforts of the rehabilitation team to preserve EW’s uniqueness and integrity as a human being. Thus they would remember her.

Preventing secondary disability

Whatever the disease process, persons in declining states of health are at risk for development of unnecessary complications. Even at the end of life, complications can be prevented, thereby enhancing a person’s comfort, function, independence, and dignity. Treatment of one body system must not compromise another. For example, patients who are bed-bound are at risk for development of muscular, vascular, integumentary, and neurological compromise, which could result in secondary disability.

Case study

JB, a man with amyotrophic lateral sclerosis

JB knew his days were numbered, irrevocably ticking away with the advance of his amyotrophic lateral sclerosis. Bit by bit, his body functions eroded. Weakness began in his lower extremities, then spread to his trunk and upper extremities. He was troubled with spasticity, which soon made ambulation almost impossible. He depended on his wife to help him with all of his daily living activities but continued to get out each day in his electric wheelchair, to work with the city government on disability policies. When he went on the ventilator to support his breathing, he likened his health to driving an old truck down a mountain road: no way to stop, no way to turn around, nothing to do but drive on home.

As JB’s disease progressed, he was at risk for the development of secondary disabilities. Concerns included the potential development of edema, contractures, and skin breakdown. JB lacked the normal muscular activity that would promote vascular return, and he developed significant edema in his extremities. Knowing that “edema is glue” when it comes to function, rehabilitation nursing actions included range-of-motion exercises and management of dependent edema with compression and elevation.1

Spasticity complicated positioning of JB’s limbs. It was important to avoid shortened positions that favored the flexors, because that would allow contractures to occur. Contractures would further limit his mobility and function, so he and his wife were taught a stretching program as well as the use of positioning devices and splints to maintain joints in neutral alignment.

Because of his impaired mobility, JB was at risk for skin breakdown. He enjoyed spending a lot of time in his wheelchair. Although his sensation was basically intact, he was not able to react to the message of skin pressure and to change his position. JB learned how to shift his weight in the wheel-chair, by either side-to side shifts or tilt-backs. A small timer helped remind him of pressure releases every 15 minutes when up in his chair. In addition, a special wheelchair cushion protected bony prominences with gel pads.

Enhancing function of both affected and unaffected systems

A chief concern in rehabilitative care is enhancing function of both affected and unaffected body systems, thereby helping patients to be as healthy and independent as possible. In palliative care, many care issues involve the interconnections of body systems and the need to enlist one function to serve for another.

Case study

PO, a man with metastatic prostate cancer

PO had been a successful attorney for 30 years. A burly, loud-spoken Irishman, he prided himself in bringing life and laughter everywhere he went. Although diagnosed and treated for prostate cancer, he never slowed the hectic pace of his law practice or his busy social calendar. In fact, he had little time to pay attention to the ominous symptoms developing that indicated the advance of his disease.

When he sought medical attention at last, the cancer had metastasized to his spine, resulting in partial paralysis and bowel and bladder impairment. Orthopedic spine surgeons attempted to relieve pressure on his spinal cord with the hope of restoring motor and sensory function. However, during surgery, it was determined that the cancer had spread extensively, and they were unable to significantly improve his spinal cord function. Radiation followed, but it had little effect on the spreading cancer.

PO was stunned. He could not believe the turn his life had taken. Suddenly, nothing seemed to work. He had to depend on others for the first time in his life. He felt like “some kind of freak,” unable to move his legs or even manage normal bodily functions. His bulky frame became a heavy burden as he tried to relearn life from a wheelchair. He wrestled with the unfairness of the situation, finally promising himself that he would “go out in style.” He wanted to get home as soon as possible, so as not to waste his precious remaining time.

PO spent 12 days on the inpatient rehabilitation unit, then transitioned to home with continued therapies and nursing care. He died 2 months later, at home with his family present.

In PO’s case, several body systems were at risk for complications, although not all were directly affected by the disease process. Mobility was a critical concern. Bowel and bladder management also presented challenges. His neurological deficits and rapidly progressing disease, combined with his size and the need to learn new skills from a wheelchair level, placed him at risk for development of contractures, skin breakdown, and deep vein thrombosis. Problems with bowel and bladder function put him at risk for constipation, distention, and infection. He experienced severe demoralization. In keeping with his wishes, the rehabilitation nursing staff designed a plan for Mr. PO and his family to follow at home. Priority rehabilitation nursing issues included:

  • Managing fatigue related to advancing disease

  • Pain control

  • Promoting mobility and independence

  • Managing neurogenic bowel and bladder

  • Alleviating social isolation related to the effects of terminal illness

  • Anticipatory grieving and spiritual care

The rehabilitation team planned PO’s care to protect his periods of rest throughout the day. They knew that his therapy would be more effective and his ability to carry over new learning of functional activities would be better if he were in a rested state. His sleep-wake cycle was restored as quickly as possible. Occupational therapists taught him strategies for energy conservation in his activities of daily living, including the use of adaptive devices, planning, and pacing. PO initially described his pain as always with him, dull and relentless, wearing him down. Rehabilitation nurses evaluated his responses in relation to different medications and dosage schedules, as well as nondrug pain control interventions such as positioning and relaxation. The most effective method of pain control for PO was scheduled doses of long-acting morphine, coupled with short-acting doses for breakthrough or procedural pain. This method of pain management is frequently used in rehabilitation settings, because it does not allow pain to become established, and the patient does not have to experience a certain level of pain and then wait for relief.

It also minimizes sedative effects. With his pain under better control, Mr. PO was able to actively participate in his own care and make deliberate decisions about his goals.

Positioning and supporting of the body in such a way that function is preserved and complications are prevented is an important consideration in mobility. As his disease progressed and he experienced increasing weakness and fatigue, he spent more and more time in bed. Teaching of the patient and family focused on the techniques of bed mobility and specific precautions to prevent complications.

Supine lying was minimized because of high risk for sacral skin breakdown. Even with a pressure-reducing mattress, back-lying time needed to be restricted. To reduce shearing forces, the bed was placed in reverse Trendelenburg position to raise the head, rather than cranking up just the head of the bed. Draw sheets were used to move Mr. PO, to prevent shearing. Stretching and breakage of capillaries and subcutaneous tissues contributes to the potential for deep skin breakdown.

Positioning of the lower extremities is important to prevent complications such as foot drop, skin breakdown, contractures, and deep vein thrombosis. When the patient is supine, care should be taken to support the feet in neutral position. This can be accomplished by using a footboard or box at the end of the bed or by the application of splints. Derotational splints were placed on his lower legs to keep his hips in alignment, to prevent foot-drop contractures, and to reduce the risk of heel breakdown. Range-of-motion exercises were done at least twice daily.

When Mr. PO was side-lying, pillows were employed to cushion bony prominences and maintain neutral joint position. His uppermost leg was brought forward, and the lower leg was straightened to minimize hip flexion contractures. Frequently overlooked as a positioning choice, prone lying offers advantages not only of skin pressure relief and reduction in hip flexion contractures, but also in promoting greater oxygen exchange.17 His bed position was alternated between back, both sides, and prone at least every 2 hours.

There are many physiological benefits of upright posture. Blood pressure, digestive and bowel functions, oxygenation, and perception are geared toward being upright. Weight bearing helps to avert skeletal muscle atrophy. Sitting, standing, and walking provide for changes in scenery and enhance the ability to socialize. This was an important consideration for Mr. PO, who experienced emotional distress at the social isolation his illness imposed.

It is important to choose seating that supports the patient, avoiding surfaces that place pressure on bony prominences. A seat that is angled back slightly helps keep the patient from sliding forward. Placing the feet on footrests or a small box or stool may add comfort, as may supporting the arms on pillows or on a table in front of the patient. Sitting time should be limited, based on patient comfort, endurance, and skin tolerance. Mr. PO followed a sitting schedule that increased by 15 minutes a day until he was able to tolerate about 2 hours of upright time. That was enough time to carry out many of his personal activities, yet not so much as to overly tire him.

Planning for Mr. PO’s return home involved careful assessment of his equipment needs. Physical and occupational therapists conducted a home evaluation to determine how he would manage mobility and self-care activities and what equipment would be appropriate. Family members practiced using equipment and devices under the guidance of the rehabilitation team. The objective was to simplify the care as much as possible, while still supporting his active participation in his daily activities.

Examples of home care equipment often used include commodes, wheelchairs, sliding boards, Hoyer lifts, adaptive devices such as reachers, dressing sticks, long-handled sponges, tub/shower benches, hospital beds, and pressure-relieving mattresses. Examples of home modifications include affixing handrails and grab bars, widening doors, using raised toilet seats, and installing stair lifts and ramps.

For PO, the loss of bowel and bladder function was especially distressing. It placed him in a position of dependence and impinged on his privacy. It reinforced his feelings of isolation and being different. The focus of rehabilitation nursing interventions was to mimic the normal physiological rhythms of bowel and bladder elimination. By helping him gain control of his body functions, nursing staff hoped to promote his confidence, dignity, and feelings of self-worth.

Bowel regulation and continence were achieved by implementing a classic bowel program routine. PO was especially prone to constipation due to immobility and the effects of pain medications. The first intervention was to modify his diet to include more fiber and fluids. He also took stool softener medication twice daily. His bowel program occurred after breakfast each morning, to take advantage of the gastrocolic reflex. He was assisted to sit upright on a commode chair. A rectal suppository was inserted, with digital stimulation at 15-minute intervals to accomplish bowel evacuation. The patient and his wife were taught how to manage this program at home. Although reluctant at first, he became resigned to the necessity of this bowel program and worked it into his morning routine. His wife, eager to help in any way she could, also learned the techniques. Once a regular pattern of elimination was established, he no longer experienced incontinence.

For bladder management, nursing staff implemented a program of void trials and intermittent catheterization. The patient learned to manage his own fluid intake and to catheterize himself at 4-hour intervals, thereby preventing overdistention or incontinence. However, as his disease progressed, he opted for an indwelling urinary catheter because it was easier for him to manage. There is a continuous need to evaluate and individualize rehabilitation goals, and to alter goals as patients experience more advanced disease.

With a history of active social involvement, PO had great difficulty with the limitations his disease imposed on his energy level and his ability to remain functional. He did not want others to see him as incapacitated in any way. He did not want to be embarrassed by his failing body. The rehabilitation team concentrated on solving the physical problems that could be solved. A recreation therapist assessed his leisure and avocational interests and prescribed therapeutic activities that would build his confidence in social situations. Together, the team helped him learn to navigate around architectural barriers and helped him to practice new skills successfully from a wheelchair level.

PO concentrated on making plans and settling financial matters in preparation for his death. He continued to set goals for himself and to maintain hope, but the nature of his goals shifted. Initially, he was concerned with not becoming a burden to his family and focused on his physical functioning. As his mobility and endurance flagged and he had to rely more on others for assistance with basic care needs, he began to change his goals. Some of his stoicism fell away. He revealed his feelings more readily and described the evolution of his emotions. Now the focus became his relationships: an upcoming wedding anniversary, a son’s graduation from law school. Rehabilitation nurses, home care nurses, the psychologist, and the social worker supported the patient and his family as they began to grieve the past that would never return and the future that was not to be. Pastoral care was a significant part of the process, as he struggled with spiritual questions and sought a peaceful understanding of what was happening to him. The rehabilitation team endeavored to help the patient live all the days of his life, by helping body and soul continue to function.

Facilitating use of adaptive strategies

The ability of patients to continue to participate actively in living their lives has much to do with successful adaptation to changes in function. Even at the end of life, a patient’s capacity to adapt remains. Everyday activities may become very difficult to perform with advancing disease. However, rehabilitation nursing actions that promote communication, the use of appropriate tools and equipment, family participation, and modifications to the environment all enhance the process of adaptation.

Communication

Opening the doors to communication is the most important rehabilitation nursing intervention. By removing functional barriers to speech, by teaching and supporting compensatory strategies, and by allowing safe opportunities for patients and families to discuss difficult issues around death and dying, rehabilitation nurses perform a critical function in the adaptation process.

Tools and equipment

Many adaptive devices are available to patients and families that enhance functional ability and independence. Rehabilitation offers the chance to analyze tasks with new eyes and solve problems with creativity and individuality. Examples of useful tools to assist patients in being as independent as possible include reachers, dressing aids such as sock-starters, elastic shoelaces, and dressing sticks. For some patients, adapted eating utensils increase independence with the activity of eating and thereby support nutritional intake. Modifications to clothing may permit more efficient toileting and hygiene, conserving both energy and dignity.

Family participation

As illustrated in the previous case studies, the involvement of family and friends has multifaceted benefits. Because of the social nature of humankind, presence and involvement of family and friends has great importance at the end of life. Family members may seek involvement in the caring activities as an expression of feelings of closeness and love. They may try to find understanding, resolution, or closure of past issues. For the person at the end of life, the presence of family, friends, and even pets may be a powerful affirmation of the continuity of life.

Modifications to environment

Rehabilitation professionals are keenly aware of the effect of the environment of care on function, independence, and well-being. The physical arrangement of furnishings can be instrumental, not only in promoting patient access to the environment, but also in the ease with which others care for the patient. The environment can be made into a powerful tool for orientation, for spatial perception, and for preserving a territorial sense of self.

Light has a strong effect, not only on visual perception, but also on mood and feelings of well-being. Light can be a helpful tool in maintaining day-night rhythms and orienting patients to time and place. Sound is also an important environmental variable. For example, music has been implicated as a therapeutic intervention in both rehabilitation and palliative care.

Promoting quality at the end of life

The concept of quality of life is linked to function and independence. Patients often describe their satisfaction with life in terms of what they are able to do. Important determinants of quality of life include (1) the patient’s own state, including physical and cognitive functioning, psychological state, and physical condition; (2) quality of palliative care; (3) physical environment; (4) relationships; and (5) outlook. Rehabilitation zeroes in on the essential components of mobility, self-care, cognition, and social interaction, which define what people can do.

Case study

LN, a 42-year-old woman with a malignant brain tumor

LN, age 42, had just started her own consulting business when she began to experience headaches and visual disturbances. At first, she attributed her symptoms to the long hours and stress related to building her business. But when she experienced weakness of her left side, she knew that something more serious was happening.

She had a glioblastoma multiforme growing deep in her brain. Surgery was performed to debulk the tumor, but in a matter of weeks it was clear that the mass was growing rapidly. A course of radiation was completed to no avail. Her function continued to decline, and it seemed that every body system was affected by the advancing malignancy. Now her left side was densely paralyzed, she had difficulty swallowing and speaking, and her thinking processes became muddled.

Her family was in turmoil. On one hand, they resented the disruption her sudden illness imposed on their previously ordered lives. On the other hand, they wanted to care for her and make sure that her remaining time was the best that it could be. As they watched her decline day by day, ambiguities in their relationships surfaced, and conflicts about what would define quality of life emerged.

Rehabilitation’s part in promoting quality of life at the end of life is several-fold. Rehabilitation is a goal-directed process. Realistic, attainable goals based on the patient’s own definition of quality of life drive the actions of the team. In the area of physical care, rehabilitation strategies support energy conservation, sequencing and pacing, maintaining normal routines, and accessing the environment. Beyond that, rehabilitation nurses facilitate effective communication and problem-solving with patients and families. They offer acceptance and support through difficult decision-making and help mobilize concrete resources.

When rehabilitation nurses approach care, it is with the goal of enhancing function and independence. In LN’s case, the brain tumor created deficits in mobility, cognition, and perception. Also, more subtle issues greatly influenced the quality of her remaining time. It was important to understand how the patient would define the quality of her own life and to direct actions toward protecting those elements.

Promoting dignity, self-image, and participation

LN’s concept of quality of life was evident in how she participated in her care and the decisions that she made about her course of treatment. The rehabilitation team learned that LN’s mother had died several years earlier of a similar brain tumor. Caring for her mother had solidified her beliefs about not wishing to burden others. Part of LN’s definition of quality of life was that she would not be dependent on others.

LN prided herself on being industrious and self-sufficient. To her, the ability to take care of herself was a sign of success. Rehabilitation nurses and therapists focused on helping to manage symptoms of advancing disease so that she would be able to do as much for herself as possible. This included adaptive techniques for daily living skills, pain management, eating, dressing, grooming, and bowel and bladder management. Even with her physical and cognitive decline, retaining her normal routines helped to allay some feelings of helplessness and to promote a positive self-image.

Control, hope, and reality

As her illness progressed, LN felt she was losing control. It became difficult for her to remember things, and expressing herself became more laborious and frustrating. She slept frequently and seemed disconnected from external events. Her family understood her usual desire for control and made many attempts to include her in conversations and to support her in making choices.

At first, her concept of hope was tied to the idea of cure. Radiation therapy represented the chance of cure. When that was completed without appreciable change in her tumor, some of her feelings of hopefulness slipped away. She sank into a depression. Her family was alarmed: LN’s psychological well-being was a critical component in her own definition of quality of life. Treating her depression became a priority issue for the rehabilitation team. Through a combination of rehabilitation, psychological counseling, and antidepressant medications, her dark mood slowly lifted. Hope seemed to return in a different form, less connected to an event of cure and more a part of her interactions with her daughter and sister.

Family support

Another significant area that related to quality of life for LN had to do with social well-being. She struggled with the idea of becoming a burden to her family and realized that she was losing control over what was happening to her. Her relationships with others in her life were complex, and now they were challenged even further. At the same time, her family members wrestled with memories of the mother’s death and feared the responsibilities for care that might be thrust on them.

The rehabilitation team tried to help the patient and her family work through their thoughts, feelings, and fears, and helped them to find ways to express them. The team arranged several family conferences to discuss not only the care issues but also the changes in roles and family structure. Whenever possible, the team found answers to the family’s questions and made great effort to keep communications open. Creating safe opportunities for the family to express their ambivalence and conflict helped move them toward acceptance. The family was able to prepare in concrete ways for the outcome they both welcomed and dreaded.

Summary

Rehabilitation nursing approaches have value in palliative care. Research has demonstrated that physical activity is safe, improves stamina and quality of life, and is a feasible intervention in patients with terminal illness. Physical activity promotes and encourages enjoyment of life despite living with progressive disease to the very end, and the benefits of movement decreases and sometimes allieviates many of the common side effects of treatment and progression of disease. Regardless of the disease trajectory, nurses can do something more to preserve function and independence and positively affect perceptions of quality of life, even at its end. Rehabilitation nurses facilitate holistic care of persons in their social and physical environments. They direct actions toward preventing secondary disability and enhancing both affected and unaffected body systems. They foster the use of adaptive strategies and techniques to optimize autonomy. The deliberate focus of rehabilitation nurses on function, independence, dignity, and the preservation of hope makes a fitting contribution to care at the end of life.

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      Resources

      • American Academy of Physical Medicine and Rehabilitation (AAPM&R)

      • 9700 West Bryn Mawr Avenue, Rosemont, IL 60018

      • http://www.aapmr.org

      • American Congress of Rehabilitation Medicine (ACRM)

      • 11654 Plaza America Drive, Suite 535, Reston, VA 20109

      • http://www.acrm.org

      • Association of Rehabilitation Nurses (ARN)

      • 8735 W. Higgins Road, Suite 300, Chicago, IL 60631

      • http://www.rehabnurse.org

      • Commission for the Accreditation of Rehabilitation Facilities (CARF)

      • 6951 East Southpoint Road, Tucson, AZ 85756

      • http://www.carf.org