Introduction

For patients with a broad range of serious life-threatening illness, loss of function and independence is a common struggle and a significant contributor to diminished quality of life. Among the factors that can contribute to loss of function are prolonged hospitalization, deconditioning, pain, fatigue, depression, malnutrition, organ failure, neurologic injury, and musculoskeletal problems. Patients with cancer can additionally experience sarcopenia from direct tumor effects and fatigue from cancer treatment. Rehabilitation, even in the advanced phase of an illness, can help to maintain or restore function, permit patients to retain mobility and independence, and improve symptoms, all of which can contribute to a reduced burden on families and caregivers and improved quality of life. The main rehabilitation modalities are physical therapy, occupational therapy, and speech/ swallowing rehabilitation. Regular and open communication with patients and their families regarding the goals of rehabilitation is critical in designing a rehabilitation plan so that realistic goals can be identified. The rehabilitation plan must also consider the patient’s environment, existing functionality, and available resources. The measure of success of a palliative care rehabilitation program should not focus on length of survival but rather on enhancing quality of life, function/independence, and psychosocial well being. Patient condition and goals of care can shift dramatically while under palliative care, and therapists must maintain some flexibility, respecting patient choices and allowing for frequent interruptions in the rehabilitation treatment plan.

Multi-disciplinary Assessment

A thorough patient assessment for rehabilitation potential involves gathering information on disease location and stage, previous and current therapies, estimated life expectancy, comorbidities, pain and nonpain symptoms, medications, cognition, mood, nutritional status, and physical function. A complete physical examination with special attention to the neurologic and musculoskeletal system is essential to evaluate motor strength, sensory deficits, joint flexibility, gait pattern, and fall risk. An evaluation of the home environment, the availability of community resources, and financial resources should also be carried out. Using a systematized evaluation process will help to determine the patient’s current level of disability, previous level of functioning, and potential to regain function, which are all important components of rehabilitation planning. Ideally, patient evaluation and planning for rehabilitation should be performed by an interdisciplinary team led by a physiatrist/palliative care physician experienced in hospice and palliative medicine along with clinicians specializing in physical therapy, occupational therapy, speech therapy, nursing, nutrition, psychology, respiratory therapy, recreation therapy, and case management. A variety of functional assessment tools may be utilized to assess function during the planning process for rehabilitation therapy and palliative care.

Types of Rehabilitation

The type of rehabilitation depends on the patient’s disease stage, function, and goals. ^, When applied to patients with life-limiting disease processes, it can be:

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  Preventive rehabilitation: Begins after the diagnosis of the potentially life-limiting illness and attempts to mitigate functional morbidity caused by the disease or its treatment.

  
  
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  Restorative rehabilitation: Attempts to return patients to their premorbid functional status when little or no long-term impairment is anticipated, and patients have remaining functional activity.

  
  
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  Supportive rehabilitation: Attempts to maximize function by augmenting self care ability and mobility for patients whose disease has been progressing, and whose functional impairments are increasing and may not be reversible.

  
  
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  Palliative rehabilitation: Attempts to maintain the highest level of quality of life that is feasible in terminally ill patients by relieving symptoms (e.g., pain, dyspnea, edema) and preventing complications (e.g., contractures, decubitus ulcers). Aims to reduce dependence in mobility and self care activities in association with the provision of comfort and emotional support.

Indications and Benefit of Rehabilitation

Application of rehabilitation in hospice and palliative care settings is feasible and safe, and provides numerous benefits for both patients with cancer and noncancer illness. A systematic review of 13 studies (one randomized trial, three prospective single-armed studies of physical therapy interventions, and nine retrospective case series examining the utilization and benefits of physical therapy) examined the benefits of physical therapy interventions (mostly strengthening/therapeutic exercises, education, balance and fall-prevention training, and transfer training) in patients with a variety of life-threatening illnesses. Benefits included a decrease in patient-rated musculoskeletal pain and improvements in function and performance of activities of daily living, mobility, endurance, mood, fatigue, and lymphedema.

All rehabilitation medicine’s diagnostic and therapeutic effort is expended on enhancing or preserving patients’ capacity for independent mobility, self care, communication, and cognition. Diseases, their treatments, and their symptoms are only relevant to the rehabilitation paradigm in the way they threaten or potentiate function. However, rehabilitation is underutilized in palliative care patients. It is often thought that physical therapy and rehabilitation are not cost-effective, particularly for patients approaching the end-stage phase of their illness. However, limited evidence from randomized trials suggests that rehabilitation is cost-effective in patients with advanced cancer. It is widely maintained that exercise and physical activity exacerbates fatigue although there is little evidence to support this assertion.

Current clinical practices in palliative care rehabilitation are largely based on the consensus statements for specific disease types (e.g., by the National Comprehensive Cancer Network), evidence derived from the early or acute stages of disease (e.g., aerobic conditioning during adjuvant chemotherapy), isolated case reports, and common sense. In areas where literature exists, such as acute rehabilitation of cancer patients, study cohorts are generally defined by diagnoses, rather than disease stage. Therefore uncertainty remains as to subjects’ prospects for disease modification or cure and the proportion of their care delivered with palliative intent. As a result, limited inferences can be made as to the efficacy of rehabilitative interventions in far-advanced disease. At present, honest recognition of rehabilitation’s incomplete evidence base in the palliative setting is the best means of preventing inappropriate adherence to therapies of equivocal benefit.

Introduction

Internationally, people often present late in their disease with limited treatment options. According to the Global Atlas of Palliative Care, it is estimated that 377 adults and 63 children out of every 100,000 of the population need palliative care. In the adult population, a cancer diagnosis constitutes one-third of the palliative care needs, while two-thirds are related to noncancer illness, such as cardiovascular disease, chronic kidney disease, dementia, HIV/AIDS, etc. In children, the major palliative care need is for noncancer conditions, with only 6% related to cancer. It is estimated that 78% of the adults and 98% of children in need of palliative care reside in low- and middle-income countries where access to palliative care is very limited. The Lancet Commission report states that significant percentages of people are experiencing serious health-related suffering due to inequitable access to palliative care. According to the International Association of Hospice and Palliative Care (IAHPC) 2018 definition, “Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.” The 2002 World Health Organization (WHO) definition of palliative care was limited to people and their families with life-limiting illness. Therefore palliative care is not a passive approach toward illness. It is an active and holistic care that encompasses all domains of health care, that is, physical, emotional, social, and spiritual aspects of care. The aim is to improve serious health-related suffering in people with severe illness, and it is not restricted only to people with terminal illness or end-of-life care. The principal objective of palliative care provision is improvement in health-related quality of life. Moreover, the patients, their families, and caregivers are considered as a single unit and the care continues to the families and caregivers beyond the death of the patient.

Benefits of Palliative Care Referral in Patients With Cancer

A systematic review reported that palliative care in patients with advanced cancer attained improved quality of life, and that the effectiveness of palliative care intervention was more pronounced in patients when they were referred early. An Italian study that assessed role of symptom control benefit of palliative care unit admission reported that the majority of symptoms were controlled within 7 days of palliative care intervention, with reduced pain, fatigue, nausea, anorexia, and breathlessness. Reduction in symptom prevalence and symptom intensity improved the quality of life. Studies also showed that palliative care interventions in lung cancer improved emotional health (improved mood and reduced anxiety and depression) after 12 weeks of palliative care intervention. This effect was independent of antidepressant usage. In these studies, improvement in depressive symptoms was attributed to regular counseling and telephonic follow up that promoted adherence to antidepressants. ^,

There is empiric evidence to suggest that palliative care interventions influence treatment decision-making. A study in patients with non–small cell lung cancer showed that palliative care interventions positively influenced treatment decisions, and that these patients did not receive intravenous chemotherapy in the last few weeks before death. Other studies demonstrate that palliative care interventions can increase prognostic awareness, end-of-life care awareness, and improving health-related communication. Palliative care interventions can facilitate advance care planning, decreased intensive care unit admission and length of stay, and positively influence the course of illness and end-of-life care outcomes. ^, Palliative care intervention in hospitalized patients with advanced cancer also decreased intensive care unit readmission, decreased emergency room visits, and lowered health care costs. Palliative care intervention can reduce inpatient admission and inpatient deaths, decrease utilization of hospital resources, and promote death at home. Unrealistic expectations from the patients, families, or health care team can lead to unwarranted or unhelpful interventions, escalating the costs, and unnecessary utilization of limited resources and health facilities. Involving a palliative care team, discussing goals of care, and advance care planning can facilitate optimal resource utilization. ^, A study showed that in patients with metastatic non–small cell lung cancer, palliative care interventions led to stopping disease-modifying treatments in remaining weeks of life, transition to hospice care, hospice utilization, and provision of good end-of-life care.

A study in non–small cell lung cancer showed that palliative care intervention also improved overall survival by 3 months. The improvement in survival was attributed to improvement in quality of life, better symptom control, knowledge of illness and understanding, and positive coping behaviors. In another study in patients with a mixed group of cancers, receiving palliative care intervention resulted in a survival benefit of 4 months. ^, Studies have shown that palliative care interventions significantly improve patient and family satisfaction of care. ^,

Delivery of Palliative Care

Inpatients who are either continuing to receive disease-modifying treatment or have completed disease-modifying treatment, have a good performance status, and are able to visit the outpatient department are offered ambulatory palliative care or outpatient palliative care service. Home-based palliative care is offered to patients who have poor performance status and are unable to visit outpatients, or prefer to remain at home, have stable symptoms, or wish to receive end-of-life care at home. The home-based palliative care intervention involves visit by a doctor or nurse either alone or together along with other members of the team on a needs basis. At home, patients receive medical consultation, palliative nursing interventions, including starting a syringe driver (e.g., analgesia) for patients in the terminal phase of illness, counseling, and support from volunteers. Hospice care is usually offered to patients with terminal illness, short prognosis, and where the goals of care are symptom control, comfort, and quality of life. The hospice is usually a standalone unit situated mostly outside the hospital setting where it has the infrastructure and environment to care for the dying. Inpatient palliative care is a specialized palliative care service for patients with poorly controlled symptoms or complications that require intensive management within the hospital setting. Inpatient palliative care involves rapid titration of medications either orally or parenterally for intractable symptoms, such as pain crisis, vomiting, breathlessness, delirium, and so on. It also involves managing complications like bowel obstruction, spinal cord compression, superior vena caval syndrome, etc. In the consultation liaison model, the patient is often admitted under other specialists, and palliative care providers provide consultation support for the management of physical symptoms, nursing care, or psychosocial interventions. In this integrated model of care, patients receive clinical input for disease-modifying therapies and for palliative care.

Pain Management in Patients With Advanced Cancer in a Palliative Care Setting

In a palliative care outpatient setting, the WHO analgesic step-ladder is used for cancer pain management. The WHO analgesic ladder is a simple treatment algorithm for pain management that is based on patient level of pain. Patients are treated using nonopioid analgesics such as nonsteroidal antiinflammatory drugs (NSAIDs) or paracetamol (acetaminophen) for mild pain. If the pain persists or worsens to moderate levels, a weak opioid analgesic is introduced alone or in combination with a nonopioid or adjuvant analgesic. If the pain persists or is severe, a strong opioid analgesic is introduced alone or in combination with a nonopioid or adjuvant analgesic. Patients with poorly controlled cancer pain may require inpatient admission to an acute inpatient palliative care unit for rapid oral opioid titration along with adjuvants. An acute pain crisis is managed with intravenous opioid trial followed by maintenance opioid infusion. The infusions are converted to oral and transdermal preparations once stable pain relief is achieved. Patients with neuropathic pain crisis can benefit from intravenous lignocaine or ketamine bolus dosage followed by maintenance dosing until neuromodulation is achieved. Patients with cancer pain not achieving adequate pain relief with Step 3 of the WHO analgesic step-ladder may benefit from interventional pain management procedures. Patients with cancer who are at end of life should have their pain assessed at least once a day. Their pain should be anticipated, and an anticipatory prescription should be provided to all patients admitted to a hospice or admitted for end-of-life care. Analgesics and doses of analgesics prescribed for pain management must be based on careful evaluation of patient pain. Doses of analgesics should be proportionate to patient pain, and response to treatment should be frequently reassessed. No attempt should be made to give a higher than required or inappropriate dose for patients who are in their end-of-life stage. As required (pro re nata [PRN], si opus sit [SOS]), orders should be prescribed to cover intermittent breakthrough pain. In the end-of-life setting, the PRN doses should be used liberally, and rapid readjustment of doses of background (round the clock) medication should occur. The administration route of analgesic delivery at end of life may also need to be changed to a subcutaneous or intravenous route, as some patients may not be able to take drugs via the oral route.