The National Consensus Project for Quality Palliative Care (NCP) defines the field by stating: “palliative care means patient and family centered care that optimizes quality of life by anticipating, preventing, and treating suffering.”1 Palliative care interdisciplinary teams (IDTs) seek to alleviate suffering and improve quality of life through communication with patients and families; management of pain and other symptoms; psychosocial, spiritual, and bereavement support for both the patient and family; and coordination of medical and social services.2
Palliative care and hospice services can be delivered in multiple forms and settings. These include, but are not limited to, the following:
- Outpatient clinics
- Physician/IDT visits to the patient’s place of residence (home, nursing home, etc)
- Medical facility consultations: in hospitals, nursing facilities, and long-term acute care facilities
- Inpatient care: palliative medicine unit/beds in an acute care hospital; and hospice unit/beds in an acute hospital, free-standing hospice center, or nursing facility
The terms palliative care and hospice care are often confused and interchanged. Although all hospice care is a form of palliative care, not all palliative care is hospice care.
Epidemiology including risk factors and primary prevention
Based on the frequency of major symptoms, such as pain, anorexia, fatigue, depression, and spiritual suffering, it is estimated that 60% of all dying patients need palliative care.3 The landmark Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments in 1995 showed that hospital personnel do not commonly engage seriously ill patients in discussions and decisions about goals of care and distressing symptoms are often undertreated.4 These deficiencies still apply today across numerous medical specialties.3
Palliative care providers treat patients with a variety of illnesses, such as the following:
- Advanced cancer (just under one half of hospice patients carry this diagnosis)
- Cardiac disease (congestive heart failure, arrhythmias, etc)
- Pulmonary disease (chronic obstructive pulmonary disease [COPD], pulmonary fibrosis, etc)
- Neurologic disease (Alzheimer dementia, stroke, amyotrophic lateral sclerosis, etc)
- End-stage renal disease (ESRD)
- End-stage liver disease
- End-stage acquired immunodeficiency syndrome
- Debility/failure to thrive
When treating this variety of patients, the IDT addresses the following:
- Physical symptoms
- Functional deficits
- Psychosocial and spiritual distress
- Advanced care planning
Disease progression including natural history, disease phases or stages, disease trajectory (clinical features and presentation over time)
Grief, whether experienced prior to loss (anticipatory grief) or after loss (bereavement), is a normative response to any loss, including loss of function or death. One of the most well-known models of normative grief trajectory, first described by Elizabeth Kubler-Ross, includes 5 nonsequential stages: denial, bargaining, anger, depression, and acceptance. However, in 15% to 25% of cases, grief does not follow a normative trajectory and instead becomes pathologic/complicated.5 Forms of pathologic grief include psychiatric disorders, grief avoidance, chronic grief, delayed grief, and inhibited grief.5 Some risk factors for complicated grief include adversities occurring in childhood, minimal social support, and lack of preparation for the loss.
2. ESSENTIALS OF ASSESSMENT
- Gather background medical information. Ask the patient and family members of their understanding of the illness and treatment, significance to them, and issues they feel are most pressing.6
- Use a screening questionnaire, such as the Edmonton Symptom Assessment Scale, which screens for common physical and psychologic symptoms experienced by the palliative care population, to minimize the underreporting of symptoms.
- Ask about current and prior substance abuse (use a screening tool, such as the CAGE questionnaire) because patterns of chemical coping influence use/dose of narcotics and anxiolytics and predict poor pain control.7,8
- Ask about care planning topics, such as advanced directives, power of attorney, living wills, and resuscitation status. Define the patient’s overall goals of care and how the patient feels the current treatment plan fits into them.
- Clinical clues can be observed while taking a history of present illness. Assess for evidence of distress from uncontrolled symptoms, neurologic deficits, and nutritional or fluid problems.
- Physical examination should be systems based, and the focus should be defined by problems uncovered during history taking.
- Knowledge of pain etiologies and referral patterns can help direct examination.
- Because delirium is common in palliative medicine patients and can be easily missed, systematically screen every patient using a brief, reliable assessment tool, such as the Memorial Delirium Assessment Scale or the Bedside Confusion Scale.
Ask about difficulties performing activities of daily living or the need for assistance. Assess gait, mobility, ability to perform activities of daily living, and fall risk, when possible. Simple bedside tasks, such as walking or rising from a chair, can help provide clues to functional deficits.3 Document overall functional status by using a validated measure, such as the Palliative Performance Scale or the Karnofsky Performance Score (KPS).
Many common palliative care issues can benefit from laboratory evaluation, if consistent with the patient’s goals of care and medical status.
- Workup of the reversible causes of delirium may allow for resolution of the delirium, minimizing patient and caregiver distress.3
- Untreated hypercalcemia may cause abdominal pain, constipation, delirium, nausea, fatigue, and anorexia.
- Dyspnea and fatigue workup may include checking a hematocrit for anemia.
- Hypokalemia and hypomagnesemia can contribute to the risk of long QT syndrome, especially when drugs, such as methadone and haloperidol, are prescribed.
- Albumin or prealbumin levels may be helpful to assess nutritional status and aid in prognostication.
Similar to decisions about lab studies, decisions about the use of imaging studies for palliative care patients should be consistent with the patient’s goals of care.
- Dyspnea caused by pericardial effusions, pleural effusions, or abdominal ascites can be evaluated via a radiograph, computerized tomography (CT) scan, or ultrasound to assess for the utility of percutaneous drainage or catheter placement options.8
- Radiographs, CT scans, and magnetic resonance imaging can help evaluate for painful bony metastatic disease, impending fractures, spinal cord compression, and new/progressive metastatic disease; facilitating evaluation of palliative radiation and palliative surgery options.
- Radiographs and CT scans can evaluate nausea and abdominal pain caused by constipation or bowel obstruction to guide the use of laxatives, gastrointestinal stents, and venting gastrostomy tubes.
Early predictions of outcomes
Although metastatic cancer has a fairly predictable course, other disease courses are more difficult to predict.9 Multiple tools have been developed to assist with prognostication:
- Cancer: Eastern Cooperative Oncology Group scale and KPS
- Chronic liver failure: Model for End-Stage Liver Disease score
- COPD: BODE Index score
- Chronic heart failure: New York Heart Association functional classification and Seattle Heart Failure Model
- Critically ill/intensive care unit: Acute Physiology and Chronic Health Evaluation score
- Dementia: Functional Assessment Staging score and Mortality Risk Index
- ESRD: Charlson Comorbidity Index
Social role and social support system
Ask about a patient’s social support system and screen for psychosocial and spiritual distress. Use of the distress thermometer and its accompanying questionnaire can facilitate screening.10 Faith/belief, Importance, Community, Address in care (FICA) and source of Hope/meaning/comfort/strength/love/peace/connection, Organized religion, Personal spirituality and practices, Effects on medical care and End-of-life issues (HOPE) tools are 2 frameworks commonly used in palliative medicine to assess the patient’s spiritual history.3
Palliative care providers are frequently faced with challenging ethical and legal situations. An understanding of the 4 major principles of medical ethics, which include autonomy, beneficence, nonmaleficence, and justice, is essential.
Common ethical challenges include the following:
- Withholding or withdrawing treatments
- Instituting do not resuscitate orders
- Using palliative sedation
- Discussing futile care
- Stopping artificial nutrition and hydration
- Mediating conflicts between caregivers regarding appropriate medical interventions for patients unable to state their own preferences1
3. REHABILITATION MANAGEMENT AND TREATMENTS
Available or current treatment guidelines
The NCP guidelines describe core concepts and structures for palliative care within 8 domains of practice.1 The National Comprehensive Cancer Network (NCCN) has developed palliative care guidelines to help integrate palliative care into oncology practice.8
At different disease stages
An increasing understanding that palliative care needs to be integrated earlier into the continuum of the patient’s medical care has led to the NCCN Task Force recommendation that palliative care should be provided simultaneously with disease-modifying therapy from the time of diagnosis.8
Examples of common symptomatic treatments in palliative care include the following:
- Pain: medications (acetaminophen, nonsteroidal anti-inflammatory agents, opiates, antidepressants, bisphosphonates, corticosteroids), radiation, psychological counseling, peripheral neural destruction, and spinal cord or peripheral nerve stimulation
- Fatigue: endurance exercises, sunlight exposure, cognitive behavioral therapy, and medications (psychostimulants, corticosteroids, antidepressants, testosterone, thyroid hormone replacement)
- Nausea: medications (dopaminergic agents, serotonin antagonists, anticholinergics, corticosteroids, somatostatin analogs), radiation, and venting gastrostomy tube
- Depression: supportive psychotherapy, cognitive behavioral therapy, and medications (psychostimulants, serotonin reuptake inhibitors)
- Anxiety: supportive counseling and benzodiazepines
- Psychosocial or spiritual suffering: social work and chaplaincy counseling
- Dyspnea: oxygen, fan, medications (opiates, anxiolytics, corticosteroids, diuretics), pleural drainage catheter, transfusion, and radiation
- Anorexia/cachexia: medications (progestational agents, corticosteroids, cannabinoids, gastrointestinal prokinetic agents, laxatives) and nutritionist counseling
Coordination of care
An interdisciplinary approach of physical, psychological, social, and spiritual needs for both the patient and family is the basis of a palliative medicine care plan. Core members of the IDT include physicians, nurses, social workers, and chaplains. Depending on the patient’s and family members’ needs, other disciplines, such as child life specialists, nursing assistants, nutritionists, physical/occupational/speech/recreational therapists, respiratory therapists, pharmacists, psychologists, and massage/art/music therapists, may be useful.1
Patient & family education
Patient and family education is crucial when establishing goals of medical care, communicating bad news, and setting realistic expectations for the relief of symptoms.
Although many assessment instruments have been developed and applied in palliative care, many are criticized because of questionnaire length, lack of relevant content, implementation impediments, or incomplete outcome domains. Quality of life scales, symptom assessment batteries, and the Palliative Performance Scale for measurement of performance status are commonly accepted palliative care measurement instruments.11
Translation into practice: practice “pearls”/performance improvement in practice (PIPs)/changes in clinical practice behaviors and skills
- Palliative care, in combination with standard care, can lead to better patient and caregiver outcomes.8 A recent study showed that early introduction of palliative care not only improves quality of life, but also improves survival in advanced cancer patients.12
- Palliative care is an interdisciplinary approach, which seeks to relieve suffering and improve quality of life by treating various symptoms, supporting physician-patient communication, and establishing goals of medical care.
4. CUTTING EDGE/EMERGING AND UNIQUE CONCEPTS AND PRACTICE
Cutting edge concepts and practice
- In 2009, hospice and palliative medicine was recognized as a distinct physician subspecialty of 11 different parent boards.
- The Joint Commission now offers specialty palliative care certification for hospital programs based on NCP guidelines.1
- The Patient Protection and Affordable Care Act of 2010 includes a provision allowing children to receive simultaneous hospice and curative care, and includes a provision to test the option for adults to receive concurrent hospice and regular Medicare Part A benefits.1
- The number of both hospice and non-hospice palliative care programs around the country has grown substantially over the last decade.
5. GAPS IN THE EVIDENCE-BASED KNOWLEDGE
Gaps in the evidence-based knowledge
- Common communication guidelines used by palliative care experts have not been shown to be associated with improved outcomes.2
- Better data regarding the treatment of noncancer-based pain syndromes, dyspnea, fatigue, delirium, spiritual distress, and bereavement are needed.2
- National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 3rd ed. 2013. Available at: https://www.nationalcoalitionhpc.org/wp-content/uploads/2017/04/NCP_Clinical_Practice_Guidelines_3rd_Edition.pdf. Accessed October 31, 2017.
- Morrison RS, Meier DE. Clinical practice. Palliative care. N Engl J Med. 2004;350:2582-2590.
- Walsh D. Palliative Medicine. Philadelphia, PA: Saunders/Elsevier; 2009.
- The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognosis and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 1995;274:1591-1598.
- Grassi L. Bereavement in families with relatives dying of cancer. Curr Opin Support Palliat Care. 2007;1:43-49.
- Emanuel LL, Librach SL. Palliative Care: Core Skills and Clinical Competencies. 2nd ed. Philadephia, PA: Saunders; 2011.
- Dalal S, Bruera E. Assessing cancer pain. Curr Pain Headache Rep. 2012;16:314-324.
- Levy MH, Adolf MD, Back A, et al. Palliative care. J Natl Compr Canc Netw. 2012;10:1284-1309.
- Warm EJ. Prognostication. 2nd ed. 2005. Available at: https://www.mypcnow.org/blank-fygxy. Accessed October 31, 2017.
- National Comprehensive Cancer Network. Distress management. Clinical practice guidelines. J Natl Compr Canc Netw. 2003;1:344-374.
- Stiel S, Pastrana T, Balzar C, Elsner F, Ostgathe C, Radbruch L. Outcome assessment instruments in palliative and hospice care–a review of the literature. Support Care Cancer. 2012;20:2879-2893.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363:733-742.
Original Version of the Topic
Chirag A. Patel, MD. Palliative care. 09/20/2013.
Chirag A. Patel, MD
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