Definition and background
Palliative care has been defined by Cairns as follows:
Palliative care is an area of health care that specifically addresses the needs of patients who have illnesses that are causing their health to deteriorate progressively, and often rapidly, towards death. The aim of palliative care is the relief of symptoms, the maintenance of the best possible quality of life for the patient within the limitations of their illness, and support for family before and after the death of the patient. Patients and their families are usually introduced to palliative care when it becomes apparent that attempts at cure are no longer possible or are inappropriate. However, from the time of diagnosis of a potentially life-threatening illness or from the time of suspicion of such an illness, patients and their families may face emotional and existential issues that are commonly addressed as part of palliative care.
Cairns further noted that “Palliative medicine is the medical component of palliative care. Practitioners of palliative medicine employ their knowledge of the pathophysiology of medical management of advanced disease as their particular contribution to the work undertaken by a multidisciplinary palliative care team.”1 The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology states that “the goals of palliative care are to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of disease or the need for other therapies. Palliative care can be delivered concurrently with life-prolonging (disease-modifying) care or as the main focus of care.” Palliative care is not “end-of-life” care in this regard.2
An estimated 12% of patients who are hospitalized for acute illness have advanced chronic illness that makes them appropriate candidates for palliative care, but only 30% of these patients will be referred to palliative care. Discharges are inaccurately assessed in 27% of these chronically ill patients, resulting in frequent readmissions or excessively long hospital stays. Ongoing continuity of care is provided for only 17% of chronically ill patients.3 The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) found substantial shortcomings in communications, treatment, and characteristics of death for end-of-life care in hospitalized patients.4
Palliative care arose in response to the needs of these patients. In the past, these patients were generally managed in an environment with an inappropriately high degree of technology for their disease stage and with overly optimistic expectations that glossed over the severity of their illness and prognosis. They also may have been in a subspecialty environment that did not provide continuity or that was driven by a disease-centered rather than a patient-centered philosophy. Palliative care is dedicated to making the health care system responsive to quality-of-life concerns to avoid the false dichotomy of either cure or care. Palliative care should be intrinsic to the care for all patients.
Patient population and characteristics
In a population of 1 million, it has been estimated that there will be 2,800 cancer deaths annually. In this group, 2,400 will have pain and 1,300 will have dyspnea.5 These patients will experience a mean of 11 to 13 different symptoms, including pain, fatigue, loss of appetite, dyspnea, depression and anxiety.6 Also, there will be 6,900 deaths caused by nonmalignant disease.5
The dying trajectory of patients with nonmalignant disease is distinctly different from that of cancer patients. Functional impairment occurs 1 year before death in 14% of cancer patients and increases to 22% to 63% of patients within the last 5 months of life. In contrast, 35% of patients with nonmalignant disease are functionally impaired 1 year before death; however, they exhibit a more gradual loss of functional activity than cancer patients. Malignancy produces a more precipitous and predictable trajectory of health impairment, whereas nonmalignant illness produces a gradual decline, punctuated by episodic abrupt deterioration, with partial recovery.7 Overall, symptom burden can be as high in terminally ill patients with nonmalignant disease as in cancer patients.
Ethical framework for palliative care
The lack of integration between the cure and care models of health care delivery forces patients to choose either aggressive medical care to modify the disease process or symptom management. Individual treatment options are limited not by free choice but by policies that force patients to choose between curative or palliative approaches to their disease.8 Untreated pain and other symptoms associated with illness compromise or destroy patient autonomy.9 Physicians can protect patients from harm and promote their welfare by palliating pain. The disparity in providing palliative care across the health care system violates the ethical concept of distributional justice. Palliative services are unavailable to a large segment of the population who suffer symptomatically and whose lives are disrupted by their disease because they choose disease-modifying or curative therapy. This system provides only comprehensive palliative care within the context of less than 6 months’ survival and requires patients to forgo access to acute care and disease-modifying therapy encouraging the hastening of death.
Patients need to have access to palliative care long before the terminal phase of their illness.10 It is inappropriate to consider a referral for palliative care only at the point at which all other alternatives have been exhausted, when the patient is highly symptomatic, or when he or she is in social disarray and family life crisis. Palliative care is required for many patients early in the course of their disease, sometimes from the time of diagnosis, rather than be associated with terminal care. Integrating the palliative care team in a seamless way with all cancer treatment services provides the best possible quality of life for patients and their families.11 Similar recommendations can be made for nonmalignant illnesses. The term end-of-life care, popularized in 1994, is an inadequate description of palliative services.
A 2012 provisional clinical opinion published by the American Society of Clinical Oncology states that patients with metastatic non-small cell lung cancer should be offered palliative care and standard oncologic care at initial diagnosis.12 This recommendation is largely based on data showing that patients with non-small cell lung cancer receiving early, appropriate palliative care have better outcomes, such as reduced symptoms, better quality of life, improved patient satisfaction, reduced futile Intensive Care Unit care as well as reduced caregiver burden and more appropriate hospice referral, and it may even increase survivial.13 The expert consensus is that “combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”12Back to Top
Palliative care services
Clinical palliative care can be made available at three distinct levels. Primary palliative care refers to basic skills and competencies required of all physicians and health care workers.14 These skills are germane to any clinical practice. Secondary palliative care refers to specialist clinicians and organizations that provide consultation and specialty care. Tertiary palliative care refers to academic centers where specialist knowledge about complex (complicated) problems is practiced, researched, and taught.
Palliative care skills
Palliative care incorporates seven major skills: communication, decision making, management of disease-related complications, symptom control, psychosocial and spiritual care, care of the dying, and coordination of care or continuity. These skills are not unique to palliative care, but they reflect good medical practice.
Good communication between the clinician and patient reduces psychological distress, encourages better compliance, instills realistic expectations, and fosters patient satisfaction with care. Communication is particularly important at critical points in the patient’s illness, including when breaking bad news, at points of transition in the disease course, when truth telling, and when explaining treatment options so that informed choice and autonomy are possible.15,16 Communication also requires listening and being present.17 Delivering bad news requires compassion, suitable physical location, time, and presence of appropriate family members. Physicians need to find out how much the patient already knows, what he or she wishes to know, and the way he or she would like to be told information before proceeding.18 Some patients want information communicated directly, whereas others—usually older or perhaps more dependent patients—want family members informed, deferring autonomy and decision making to them. Information needs to be given in a digestible form and repeated. Physicians need to respond to patients’ feelings with empathy. Advance planning care, continuity, and clinical guidance support the patient throughout this process.
Despite the palliative care team’s efforts, communication between the team and the patient is a moderate to severe problem in 20% of cases, and communication between the patient and family members is a moderate to severe problem in 30% to 40% of cases.19 Respiratory and digestive system malignancies are particularly associated with greater difficulties in communication between patients and families. Earlier referral to palliative care teams can reduce communication problems. Poor communication is associated with greater spiritual needs, poor care planning, and poor patient and family insight. Good communication greatly facilitates the ability to care for patients at home.
When a plan of care is incongruent with the disease course, chaos usually reigns. Medical management often is inappropriate for the stage of illness, and medical costs increase as tests and technology become substitutes for sensible decision making. Decision making should take into account patient values and beliefs regarding the illness trajectory and should weigh the use of technology against expected benefits and risks. Fragmentation of care in a subspecialty environment can lead to inappropriate care plans because of an overly optimistic or incomplete understanding of the prognosis, whereas palliative care could better serve the patient’s interests. Two of the most important questions physicians need to ask themselves are “What is the plan of care?” and “What are the goals of therapy?” These important questions should then be followed by asking “Does the plan of care and goals of therapy make sense for this patient?”
Treatment of Complications and Symptoms
Palliative care defines illness as whatever is experienced by the patient. Physicians grossly underestimate symptoms in most patients.17,19 Patients volunteer an average of two or three symptoms; this figure almost quadruples with a formal review of systems. In a study of 1,000 advanced cancer patients,19 the 10 most commonly elicited symptoms were pain, easy fatigability, weakness, anorexia, weight loss, lack of energy, dry mouth, constipation, dysphagia, and early satiety. These symptoms were found in more than 50% of patients surveyed. All symptoms were clinically disabling and all contributed to poor quality of life. Gender and age differences in symptom prevalence also exist. For example, nausea and vomiting are more commonly experienced by women, and dysphagia is more common in men. The young experience sleep disturbances, depression, anxiety, vomiting, and have headaches more often than older adults. Symptoms and severity change with disease progression. Symptoms associated with a poorer prognosis are anorexia, dysphagia, hallucinations, weight loss, early satiety, and dyspnea.20
Health-related quality-of-life tools help assess the most prevalent symptoms and measure the detrimental effects these symptoms have on quality of life.21 The extent of investigations for symptoms depends on an appropriate patient-centered plan of care, available treatment options, and course of the illness. Prescribing for symptoms has been described in detail in the literature. Principles of good prescribing include the following:
- Using one drug for several symptoms
- Choosing medications with the fewest drug interactions
- Using medications with reduced side effects
- Choosing drugs with multiple routes of administration
Drug efficacy, drug costs, and therapeutic index (dose toxicity to dose response) are other important considerations. A number of books have been published on the management of symptoms.22-24
Psychosocial and Spiritual Care
The family is the primary support for patients with life-threatening illnesses. Patient and family education, counseling, and assessment of family dynamics are particularly important when transitioning patients to palliative care. A social worker or psychologist trained in palliative care can be invaluable in this regard. Psychosocial care involves assessing the gaps in communication and understanding between the palliative care team and family as well as evaluating family dynamics, which may be dysfunctional. Family dysfunction may result in disruptive behavior, ambivalence, or discord.25 Disposition to home requires that the family maintain the patient’s comfort (maintain symptom control), safety (maintain a physically and emotionally supportive environment), and dignity (hygiene). Family evaluation, education, and counseling are effectively done through a family meeting. Critical function for care at home depends on common factors, such as problem solving, adjustment, coping, the performance status of the patient and caregivers, and communication.26
In the hospital environment, a centralized palliative care unit fosters multidisciplinary care. In addition to the physical duties of providing nursing cares, nurses assess patients’ fears and anxieties, provide the palliative care team with insight into family dynamics, act as advocates for family needs, educate families and patients, and provide consolation when death occurs. Palliative nurses train families about the special requirements for disposition, such as ostomy care and orthotics aids, review the home medication schedule, and educate families about the signs and symptoms of dying.26
Most patients want their medical team to be aware of their spiritual and religious beliefs. In a survey given to patients with advanced illness to determine what factors are most important to them at the end of life, being at peace with God was ranked highest, along with pain control.27 Spiritual support from the medical team has been shown to improve a patient’s quality of life as well as decrease the odds that a patient will receive aggressive care at the end of life.28
Spirituality has many different definitions, but it is recognized as an important domain for palliative care patients. Spirituality has been separated from organized religion and traditional orthodox spirituality, which include a relationship with God.29 Spirituality has been described as “the inherent quality of all humans that activates and drives the search for meaning and purpose in life. Spirituality involves all human experiences in relationship to self, others, and a transcendent dimension.”30 Because different convictions exist on the meaning of spirituality, the clinician should ask the patient about his or her particular beliefs (ie, spirituality as meaning or spirituality in a traditional theistic sense).31,32 A threat to life often carries with it a challenge to meaning. A spiritual crisis can manifest itself in somatization and poor symptom control as the patient struggles with a profound sense of meaninglessness and hopelessness. Chaplains are a valuable member of the palliative care team when the clinician is unsure how to address the spiritual needs of the patient. Chaplains have been trained in addressing the many challenges patients face in regards to advanced illness, such as spiritual crises, search for meaning or purpose, finding meaning within an organized religion, and many other spiritual or religious concerns.
Care of the Dying
Psychological and biological markers of the imminently dying include cognitive failure, restlessness, dyspnea, pain, anorexia, bed-bound state, retained upper respiratory tract secretions (death rattle), inability to swallow, withdrawal, hallucinations, Cheyne-Stokes respiration, reduced blood and pulse pressures, reduced urinary output, mottled skin, and incontinence.33 However, not all patients present with these signs and symptoms. Additionally, the signs and symptoms of dying are often mistaken for drug side effects, and physicians or families might discontinue medications, which only worsens the situation (Box 1).
|Box 1: Psychological and Biologic Markers of the Imminently Dying33|
|Retained upper respiratory tract secretions (death rattle)|
|Inability to swallow|
|Reduced blood pressures and pulse pressure|
|Reduced urinary output|
Dying patients need symptom relief, the presence of a significant other, physical expressions of affection and caring, and truth telling.34 Active management is required for pain, dyspnea, nausea, vomiting, myoclonus, and death rattle. Three or four types of medication are generally used; opioids for pain and dyspnea; chlorpromazine for dyspnea, delirium, anxiety, and nausea; antimuscarinics (e.g., glycopyrrolate, hyoscyamine, hyoscine hydrobromide) for secretions; and benzodiazepines for myoclonus or seizure. Medications require versatility (multiple routes of administration) because many patients are unable to take medications by mouth near the end of life.34
Coordination of Care
Patients get lost among the various subspecialties involved in multidisciplinary comprehensive oncologic care. Identification with a single physician-nurse dyad improves patient satisfaction, avoids conflicting or overlapping prescribing, and allows a smooth transition to palliative care without antitumor treatment, when appropriate. These goals are accomplished only by avoiding an either-or approach to palliative care and oncology and by discounting palliative medicine as end-of-life care. Provision for a number of entrance points into palliative-care programs, including inpatient consulting services, outpatient services, and hospice services, is important for timely referral. The availability of multiple services within palliative care allows the palliative care team to follow the patient throughout the course of illness, whether the patient is in an institution or at home. Patients should not be managed by limited palliative services, which is particularly true if services are limited to consultation only.35 A 24-hour on-call system is part of continuity of care.
Hospice is a subset of palliative care that is delivered to terminally ill patients in the last 6 months of life. Unlike palliative care, a patient must choose to forgo disease-modifying therapy to qualify for hospice services.
Outcomes to palliative care should be satisfactory control of pain and symptoms, reduction in patient and family distress, an acceptable sense of control, relief of the caregiver’s burden, strengthened relationships, optimized quality-of-life as defined by the patient, and personal growth and enhanced meaning.
- The aim of palliative care is the relief of symptoms, maintenance of the best possible quality of life for the patient within the limitations of the illness, and support for the family before and after the death of the patient.
- An estimated 12% of patients who are hospitalized for acute illness have advancing chronic illness and are appropriate candidates for palliative care, but only 30% of them are referred to palliative services.
- Palliative care incorporates seven major skills: communication, decision making, management of disease-related complications, symptom control, psychosocial and spiritual care, care of the dying, and coordination or continuity of care.
- Cairns W. The problem of definitions. Progress in Palliative Care 2001;9:187-189.
- Levy MH, Back A, Benedetti C, et al. NCCN clinical practice guidelines in oncology: palliative care. J Natl Compr Canc Netw 2009; 7:436–473.
- Edmonds P, Karlsen S, Addington-Hall J. Palliative care needs of hospital inpatients. Palliat Med 2000; 14:227–228.
- The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT). JAMA 1995; 274:1591–1598.
- Higginson I. Palliative and terminal care. In: Stevens A, Raftery J, eds. Health Care Needs Assessment: The Epidemiologically Based Needs Assessment Reviews. New York, NY: Radcliffe Medical Press; 1997:183–260.
- Homsi J, Walsh D, Nelson KA, et al. The impact of a palliative medicine consultation service in medical oncology [published online ahead of print February 15, 2002]. Support Care Cancer 2002; 10:337–342. doi:10.1007/s00520-002-0341-8
- Teno JM, Weitzen S, Fennell ML, Mor V. Dying trajectory in the last year of life: does cancer trajectory fit other diseases? J Palliat Med 2001; 4:457–464.
- Haycox A. Optimizing decision making and resource allocation in palliative care. J Pain Symptom Manage 2009; 38:45–53.
- Peter E, Watt-Watson J. Unrelieved pain: an ethical and epistemological analysis of distrust in patients. Can J Nurs Res 2002; 34:65–80.
- Woodruff R. The problem of definitions. Progress in Palliative Care 2002; 10:17.
- A Policy Framework for Commissioning Cancer Services: A Report by the Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. London: Department of Health; April 1995.
- Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care [published online ahead of print February 6, 2012]. J Clin Oncol 2012; 30:880–887. doi:10.1200/JCO.2011.38.5161
- 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.
- von Gunten CF. Secondary and tertiary palliative care in US hospitals. JAMA 2002; 287:875–881.
- Mills ME, Sullivan K. The importance of information giving for patients newly diagnosed with cancer: a review of the literature. J Clin Nurs 1999; 8:631–642.
- Higginson IJ, Constantini M. Communication in end-of-life cancer care: a comparison of team assessments in three European countries. J Clin Oncol 2002; 20:3674–3682.
- Rousseau P, Olso B. Initial communication of a terminal illness. J Termin Oncol 2002;1:7-9.
- Buckman R. How to Break Bad News: A Guide for Health Care Professionals. Baltimore, MD: Johns Hopkins University Press; 1992.
- Donnelly S, Walsh D. The symptoms of advanced cancer. Semin Oncol 1995; 22(2 suppl 3):67–72.
- Reuben DB, Mor V, Hiris J. Clinical symptoms and length of survival in patients with terminal cancer. Arch Intern Med 1988; 148:1586–1591.
- Osobar D. Quality of life assessment in palliative medicine. Progress in Palliative Care 1996; 4:167-168.
- Waller A, Caroline NL. Handbook of Palliative Care in Cancer. Boston, MA: Butterworth-Heinemann; 1996.
- Twycross RG. Symptom Management in Advanced Cancer. 2nd ed. New York, NY: Radcliffe Medical Press; 1997.
- Woodruff R. Palliative Medicine: Evidence-Based Symptomatic and Supportive Care for Patients with Advanced Cancer. 4th ed. New York, NY: Oxford University Press; 2004.
- Powazki RD, Palcisco C, Richardson M, Stagno SJ. Psychosocial care in advanced cancer. Semin Oncol 2000; 27:101–108.
- Powazki RD, Walsh D. Acute care palliative medicine: psychosocial assessment of patients and primary caregivers. Palliat Med 1999; 13:367–374.
- Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000; 284:2476–2482.
- Balboni TA, Paulk ME, Balboni MJ, et al. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death [published online ahead of print December 17, 2009]. J Clin Oncol 2010; 28:445–452. doi:10.1200/JCO.2009.24.8005
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- Hermann CP. The degree to which spiritual needs of patients near the end of life are met. Oncol Nurs Forum 2007; 34:70–78.
- Puchalski CM. Addressing the spiritual needs of patients. Cancer Treat Res 2008; 140:79–91.
- Ehman JW, Ott BB, Short TH, Ciampa RC, Hansen-Flaschen J. Do patients want physicians to inquire about their spiritual or religious beliefs if they become gravely ill? Arch Intern Med 1999; 159:1803–1806.
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