Definition and background

Palliative care has been defined by Cairns ¹ 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 state 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 advancing chronic illness and are appropriate candidates for palliative care, but only 30% of these patients will be referred to palliative services. 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 that half of patients dying within the hospital suffer from uncontrolled pain and that decisions regarding care are inappropriately timed. ⁴

Palliative medicine arose in response to the care of this group of patients. In the past, they were generally managed in an environment with an inappropriately high degree of technology for their stage of disease 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 and that was driven by a disease-centred rather than a patient-centred philosophy. ⁵ Palliative care is a movement dedicated to making the health care system responsive to quality-of-life concerns so as to avoid the false dichotomy of either cure or care. Palliative care should be intrinsic to the care for all patients. ⁶

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Patient population and characteristics

In a population of 1 million, it has been estimated that there will be 2800 cancer deaths annually; in this group, 2400 will have pain and 1300 will have dyspnea. ⁷ These patients will experience a mean of 11 to 13 different symptoms ⁸ and, in this group, there will be 6900 deaths caused by nonmalignant disease. ⁷

The dying trajectory of patients with nonmalignant disease is distinctly different from that of cancer patients. Functional impairment occurs 1 year before death in 13.9% of cancer patients and increases to 22% to 63% of patients within the last 5 months of life. Greater disability occurs in terminally ill patients with a nonmalignant disease than in cancer patients 1 year before death; 35% of patients with nonmalignant disease are functionally impaired, but most 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. ⁹ However, symptom burden can be as high in terminally ill patients with nonmalignant disease as in cancer patients.

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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. ¹⁰ Untreated pain and other symptoms associated with illness compromise or destroy patient autonomy. ¹¹ Physicians can protect patients from harm and promote their welfare by palliating pain. The disparity in the provision of 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.

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Appropriate referral

Patients need to have access to palliative care long before the terminal phase of their illness. ¹² It is inappropriate to consider a palliative medicine referral 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. The United Kingdom's policy framework for commissioning cancer services states that “Palliative care is required for many patients early in the course of their disease, sometimes from the time of diagnosis. It should not be associated with terminal care. The palliative care team should be integrated in a seamless way with all cancer treatment services to provide the best possible quality of life for patients and their families.” ¹³ Similar recommendations can be made for nonmalignant illnesses. The term end-of-life care, popularized in 1994, is an inadequate description of palliative services. ¹⁴

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Palliative medicine 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. ¹⁵ 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.

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Palliative medicine skills

Palliative medicine 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 medicine, but they reflect good medical practice.

Communication

Good communication between the clinician and patient reduces psychological distress, encourages better compliance, instils 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. ^16,17 Communication also requires listening and being present. ¹⁸ Delivering bad news requires compassion, suitable physical location, time, and presence of appropriate family members. Physicians need to find out how much the patient knows, what he or she wishes to know, and the way he or she would like to be told information before proceeding. ¹⁹ 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. ¹⁹

Despite the palliative care team's efforts, communication between the palliative care 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. ¹⁷ 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.

Decision Making

When a plan of care that is congruent with disease course is absent, chaos usually reigns. Medical management often is inappropriate for the stage of illness, and medical costs increase as tests and technology become substitutes for wise 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 delay transitioning 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?”

Treatment of Complications and Symptoms

Palliative medicine defines disease as whatever is experienced by the patient. Physicians grossly underestimate symptoms in most patients with multiple symptoms. ^18,20 Patients volunteer an average of two or three symptoms; this figure almost quadruples with a formal review of systems. ⁸ In a 1000-patient study of advanced cancer patients, the ten 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, and vomiting and have headaches more often than older adults. Symptom clusters and severity change with disease progression. Poor prognostic symptoms are anorexia, dysphagia, hallucinations, weight loss, early satiety, and dyspnea. ²¹

Health-related quality-of-life tools can help determine the most prevalent symptoms and measure the detriment that these symptoms have on quality of life. ²² 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. ^23-25

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 is 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; this is evidenced by disruptive behavior, ambivalence, or discord. ²⁶ Disposition to home requires that the family keep the patient comfortable (maintain symptom control) and safe (maintain a physically and emotionally supportive environment) and maintain the patient's dignity (hygiene). Patient and family evaluation, education, and counselling are effectively done through a family meeting. Critical functioning of the patient and family depend on four common factors: problem solving, adjustment coping, performance status of the patient and caregivers, and communication. ²⁷

In the hospital environment, a centralized unit fosters multidisciplinary care. In addition to the physical duties of nursing, nurses assess patients’ fears and anxieties, provide the palliative care team with insight into family dynamics, act as advocates for family needs, educate, 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

A threat to life 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. ²⁸ Definitions of spirituality have evolved within certain hospice organizations to mean predominantly a search for meaning, at least in the English-speaking world. Spirituality has been separated from organized religion and traditional orthodox spirituality, which include a relationship with God; this has been replaced by the present wider definition. ²⁹ Fully developed, it is a secularized version of the Christian Reformation; the “priesthood of all the believers” is seen as involving all in palliative care and, as a result, spiritual care is to be done by all. ²⁹

Such developments in the definition of spirituality have been molded by a recent disenchantment with religious institutions and a strong emphasis on individualism and autonomy, which are fostered by enlightenment principles and humanism. Many, however, hold to traditional orthodox spirituality, which will require the attention of a chaplaincy. Traditional orthodoxy uses believing and belonging (ritual and sacrament within community) to bestow hope and continuity. Western society has become a multifaith society, which requires consulting religious leaders of various faiths. The clinician should be aware of the divergent definitions of spirituality and be informed by the patient about his or her particular beliefs (i.e., spirituality as meaning or spirituality in a traditional theistic sense). ³⁰

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. ³¹ 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).

Dying patients need symptom relief, the presence of a significant other, physical expressions of affection and caring, and truth telling. ³² Active management is required for pain, dyspnea, nausea, vomiting, myoclonus, and death rattle. Three or four types of medication are generally used; these include 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. ³²

Coordination of Care

Patients can 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 non-antitumor palliative care when appropriate. These goals can be 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 such services allows the palliative care team to follow the patient throughout the course of illness wherever the patient may be 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. ³³ A 24-hour on-call system is part of continuity of care.

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Palliative outcomes

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. ²

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Summary

• 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% are referred to palliative services.
• Palliative medicine 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.

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Suggested Readings

• American Academy of Pain Medicine. Quality Care at the End of Life: A position statement from the American Academy of Pain Medicine. Available at http://www.painmed.org/Workarea/DownloadAsset.aspx?id=3217 1998;(accessed March 12, 2009)
• American Pain Society. Principles of Analgesic Use in the Treatment of Acute and Cancer Pain (4th ed). Available for order at http://www.ampainsoc.org/pub/principles.htm(accessed March 12, 2009)
• Beider S. An ethical argument for integrated palliative care. The Heart Touch Project. Evid Based Complement Alternat Med. 2005; 2:(2) 227-231.
• Buckman R. How to Break Bad News: A Guide for Health Care Professionals.
• Davis M, Frandsen J , Dickerson D , Ripamonti C. Prescribing for the actively dying patient: Principles and practice. J Termin Oncol. 2002; 1: 19-32.
• Edmonds P, Karlsen S , Addington-Hall J. Palliative care needs of hospital inpatients. Palliat Med. 2000; 14: 227-228.
• Higgenson I. Palliative and terminal care: Health care needs assessment.
• 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.
• Homsi J, Walsh D , Nelson KA. et al: The impact of a palliative medicine consultation service in medical oncology. Support Care Cancer. 2002; 10: 337-342.
• Hoyer T. Hospice and future of end-of-life care: Approaches and funding ideas. J Palliat Med. 2002; 5: 259-262.
• Lisson E. Ethical issues in pain management. Semin Oncol Nurs. 1989; 5: 114-119.
• National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology V.I. 2008. Available at http://www.nccn.org(accessed March 12, 2009)
• Powazki RD, Palcisco C , Richardson M , Stagno SJ. Psychosocial care in advanced cancer. Semin Oncol. 2000; 27: 101-108.
• 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 treatments (SUPPORT). JAMA. 1995; 274:(20) 1591-1598.
• 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.
• von Gunten CF. Secondary and tertiary palliative care in US hospitals. JAMA. 2002; 287:(7) 875-881.
• Walter T. Spirituality in palliative care: Opportunity or burden?. Palliat Med. 2002; 16: 133-139.
• Woodruff R. Palliative Medicine: Symptomatic and Supportive Care for Patients with Advanced Cancer and AIDS.
• Adams N. Worldwide Palliative Care Alliance. “Access to pain relief: an essential human right. A report for World Hospice and Palliative Care Day 2007. Help the Hospices for the worldwide Palliative Care Alliance. J Pain Palliat Care Pharmacother. 2008; 22:(2) 101-129.