View the Disease Management Project
Table of Contents

Department of
Hematology and
Medical Oncology

Definition and
Background

Patient Population/
Characteristics

Appropriate
Referral

Palliative
Medicine Skills

Structure of Palliative Medicine Programs

References

As defined by Cairns,¹ "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."¹

Cairns further noted,¹ "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

Palliative medicine, a young subspecialty, is recognized by the World Health Organization. A growing body of literature, the development of national organizations, and a recognized expertise have given credence to the value of palliative medicine. However, clinical trials in palliative care are difficult to conduct due to attrition and the need for active symptomatic treatment.

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% will be referred to palliative services. Discharges are inaccurately assessed in 27% of these chronically ill, resulting in frequent readmissions or excessively long hospital stays. Ongoing continuity of care is provided in only 17% of chronically ill patients.²

Palliative medicine arose in response to the care of this group of patients who 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 or in a subspecialty environment that did not proffer continuity and that had been driven by a disease-centered rather than patient-centered philosophy.³

Within a population of 1 million, there will be 2,800 cancer deaths per year; among this group, 2,400 will have pain and 1,300 will have dyspnea.⁴ These patients will experience a mean of 11 to 13 different symptoms.⁵ Also within a population of 1 million, there will be 6,900 deaths due to nonmalignant disease.⁴

The dying trajectory of patients with nonmalignant disease will be 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 nonmalignant terminally ill patients than in cancer patients 1 year before death; 35% of patients with nonmalignant disease will be functionally impaired, but most will 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 with episodic abrupt deterioration with partial recovery.⁶ However, symptom burden can be as great in terminally ill patients with nonmalignant disease as it is in cancer patients.

Patients need to have access to palliative care long before the terminal phase of their illness.⁷ It is inappropriate to consider a palliative medicine referral only at the point where 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 services⁸ states, "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." Similar recommendations can be made for nonmalignant illnesses. The term end-of-life care, popularized in 1994, is an inadequate description of palliative services.⁹

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 seven skills are not unique to palliative medicine, but reflect good medical practice.

Communication
Good communication between the clinician and the 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 disease-course transition, when truth telling, and when explaining treatment options so that informed choice and autonomy are possible.^10,11 Communication also requires listening and being present.¹² Delivering bad news requires compassion, a correct physical location, time, and the presence of appropriate family members. Physicians need to find out how much the patient knows, what he or she wishes to know, and the manner in which he or she would like to be told information before proceeding.¹³ Some patients want information directly communicated, 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 digestible form and repeated. Physicians need to respond to patients' feelings with empathy. Advanced planning care, continuity, and clinical guidance support the patient throughout this process.¹³

Despite the palliative care team's efforts, communication between the palliative care team and patients is a moderate to severe problem in 20% of cases and between the patient and family members in 30% to 40% of cases.¹¹ 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 problems in communications. 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.¹¹

Decision Making
When a plan of care is absent during communication with the patient, chaos usually reigns. Medical management often is inappropriate for the stage of illness, and medical costs increase as tests and technology substitute for 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 benefit and risk. Fragmentation of care in a subspecialty environment may delay transitioning due to an overly optimistic or incomplete understanding of the prognosis, whereas palliative care would better serve the patient's interests. "What is the plan of care and what are the goals of therapy?" are two of the most important questions physicians need to ask themselves.

Management of Complications/
Symptoms and Their Control
Palliative medicine defines disease as what the patient says it is. Most patients with multiple symptoms have symptoms grossly underestimated by physicians.^12,14 Patients volunteer an average of two to three symptoms; this figure nearly quadruples with a formal review of systems.⁵ In a 1,000 patient study of advanced cancer patients, the 10 most commonly elicited symptoms were pain, easy fatigability, weakness, anorexia, weight loss of 10% or more, lack of energy, dry mouth, constipation, dysphagia, and early satiety.¹⁴ These symptoms were found in more than 50% of the patients surveyed. All symptoms were clinically disabling, and all contributed to poor quality of life. Gender and age differences in symptoms also exist. For instance, nausea and vomiting are more commonly experienced by women, and dysphagia is more common among men.¹⁴ The young experience disturbances in sleep, depression, anxiety, and vomiting and have headaches more often than the elderly.¹⁴ Symptom clusters and severity change with disease progression. Poor prognostic symptoms are anorexia, dysphagia, hallucinations, weight loss, early satiety, and dyspnea.^14,15

Health-related quality-of-life tools survey for the most prevalent symptoms and measure the detriment these symptoms have on quality of life.¹⁶ The extent of investigations for symptoms depends on an appropriate patient-centered plan of care, available treatment options, and the course of illness. Prescribing for symptoms is an art well published within the literature. Principles of good prescribing include:

• The use of one drug for several symptoms
• Choosing medications with the least number of drug interactions
• Using medications with reduced side effects
• Choosing drugs with multiple routes of administration
• Drug efficacy
• Drug costs
• Therapeutic index (dose toxicity to dose response)

Multiple books have been published on the management of symptoms.^17-19

Psychosocial and Spiritual Care
The family is the primary caring unit 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 as evidenced by disruptive behavior, ambivalence, or discord.²⁰ Disposition to home requires that the family keep the patient comfortable (maintain symptom control), safe (maintain a physically and emotionally supportive environment), and maintain the patient's dignity (hygiene).²⁰ Patient and family evaluation, education, and counseling are effectively done through a family meeting.²⁰ Critical functioning of the patient and family are dependent on four common factors: problem solving, adjustment coping, performance status of the patient and caregivers, and communication.²¹

Within 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 console when death occurs. Palliative nurses train families in the special needs necessary for disposition, such as ostomy care and orthotic aids; review the home medication schedule; and educate families about the signs and symptoms of dying.²⁰

A threat to being 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.²² Definitions of spirituality have evolved within certain hospice organizations to mean predominately a search for meaning (at least in the English-speaking world). Spirituality has been separated from organized religion and traditional orthodox spirituality as a relationship with God, and has been replaced by the present wider definition.²³ Fully developed, it is a secularized version of the 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.²³

Such development in the definition of spirituality is molded by a recent disenchantment with religious institutions and a strong emphasis on individualism and autonomy, which is 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 as to his or her particular beliefs (ie, spirituality as meaning or spirituality in a traditional theistic sense).

Terminal Care
In the final stages of life, the goals of care focus on symptom management. Predicting life expectancy, particularly for noncancer patients, can be problematic. The waxing-and-waning pattern of congestive heart failure (CHF), for instance, is distinctly different to the predictable course of advanced cancer. The transfer of patients with CHF to the palliative care service is appropriate when the following criteria occur:

• Serum sodium is less than 138 mmol/L
• Heart rate is greater than 100 beats per minute
• Serum creatinine is greater than 2 mg/dL
• The patient has had prior multiple decompensations requiring hospitalization
• The patient experiences dyspnea at rest (New York Heart Association Class IV).²⁴

Minor criteria also exist. Complications from CHF and co-morbidities as well as age are added factors. Patients should receive maximum therapies, such as angiotensin-converting enzyme inhibitors and diuretics, beta blockers, and spironolactone, before being considered for palliative care or hospice. Episodic decompensations with successful medical resuscitation may be seen by patients as rehearsals for dying, but may also lead to a change in advanced directives with successful medical management. Sudden deaths are relatively common as the final event in CHF. Families need to be warned of this upon the patient's admission to the palliative service.

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 and hallucinations, Cheyne-Stokes respiration, reduced blood pressure and pulse pressure, reduced urinary output, mottled skin, and incontinence.²⁵ However, not all patients manifest these signs and symptoms. Additionally, the signs and symptoms of dying are frequently mistaken for drug side effects, and physicians or families may discontinue medications only to make matters worse.

Dying patients need symptom relief, the presence of a significant other, physical expressions of affection and caring, and truth telling.²⁶ Active management is required for pain, dyspnea, nausea, vomiting, myoclonus, and death rattle. Three to four types of medications are in standard use and include opioids for pain and dyspnea; chlorpromazine for dyspnea, delirium, anxiety, and nausea; antimuscarinics (such as glycopyrrolate, hyoscyamine, hyoscine hydrobromide) for secretions; and benzodiazepines for myoclonus or seizure. Medications will require versatility (multiple routes of administration) as many patients will be unable to take medications by mouth near the end of life.²⁶

Coordination of Care
Patients can get lost among the various subspecialties with multidisciplinary comprehensive oncologic care. Identification with a single physician-nurse dyad improves patient satisfaction, avoids conflicting or overlapping prescribing, and allows for 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 multiple entrance points into palliative care programs, including inpatient, inpatient consulting services, outpatient, 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 within the institution or at home. Patients should not be managed by limited palliative services, which is particularly true if services are limited to consultation only.²⁷ A 24-hour on-call system is part of continuity.

Specialists in palliative medicine can encourage the adoption of palliative principles within various subspecialties or can train other subspecialists in the art of palliation. Specialists in palliative medicine need to train others in palliative medicine as a career. Integration of palliative medicine within an institution may be:

• By indirect patient contact (ie, the "curbside consult")
• As a single-patient consultation to give direction
• A collaborative effort between oncologists or other specialists during active disease-modifying therapy
• Transitional to active palliation by formal transfer of care

The structure of a comprehensive palliative service should include inpatient and outpatient consultation services, an inpatient unit, outpatient clinics, community hospice services, supportive-advisory disciplines, education and training activities, and research. Most patients referred to palliative programs are highly symptomatic and should be seen in a timely fashion. Various models of comprehensive programs exist and have been adopted to the particularities of the institution.⁵

Conflicts
Conflicts can arise between subspecialties. Referral is based on the oncologist's or medical specialist's concept of care and may occur with transition to late-stage disease. This can lead to discontinuous rather than collaborative care or, at the point of the terminal phase of illness, leave little time for counseling or education of the patient and family. Patients and families in this situation are faced with a new care team during a period of high stress, which can frustrate both the family and the palliative care team. Previously prescribed pharmaceuticals may have to be altered due to end organ failure, the plan of care, redundancy, or cost. The palliative physician needs to prescribe as if the patient is going into hospice, which in the United States is financially capitated. Drug choices are based on efficacy and cost. In general, the highly expensive, newly marketed medications are not initially used unless there is a distinct advantage or if standard medications have failed to relieve symptoms or have produced unacceptable side effects.

Conflicts in the goals of care also can arise between specialists and the palliative care team. The promise of antitumor treatment if the patient improves may prevent or delay appropriate hospice referral for some patients. Palliative medicine is not an advertising point for comprehensive cancer centers, and patients who come to cancer centers seek active antitumor therapy rather than symptom management. Palliative medicine may not be the answer that the patient is seeking.

Return to Medicine Index

1. Cairns W. The problem of definitions. Progress in Palliative Care. 2001;9:187-189 [editorial].
   
   
2. Edmonds P, Karlsen S, Addington-Hall J. Palliative care needs of hospital inpatients. Palliat Med. 2000;14:227-228.
   
   
3. Davis M. Integrating palliative medicine into an oncology practice, chapter in press.
   
   
4. Higgenson I. Palliative and terminal care: health care needs assessment: the epidemiologically based needs assessment reviews, second series. Stevens A, Raftery R, eds. Oxford; New York: Radcliffe Medical Press, 1997.
   
   
5. 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.
   
   
6. 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.
   
   
7. Woodruff R. The problem of definitions. Progress in Palliative Care. 2002;10:17.
   
   
8. Expert Advisory Group on Cancer. A policy framework for commissioning cancer services: a report to the chief medical officers of England and Wales. (Calman-Hine Report) London: Department of Health, 1995.
   
   
9. Davis M, Walsh D, LeGrand S, Lagman R. End of life care: The death of palliative medicine? J Palliat Med, in press.
   
   
10. 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.
    
    
11. 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.
    
    
12. Rousseau P, Olso B. Initial communication of a terminal illness. Journal of Terminal Oncology. 2002;1:7-9.
    
    
13. Buckman R. How to break bad news: a guide for health care professionals. Baltimore: Johns Hopkins University Press, 1992.
    
    
14. Donnelly S, Walsh D. The symptoms of advanced cancer. Semin Oncol. 1995;22:67-72.
    
    
15. Reuben DB, Mor V, Hiris J. Clinical symptoms and length of survival in patients with terminal cancer. Arch Intern Med. 1988;148:1586-1591.
    
    
16. Osobar D. Quality of life assessment in palliative medicine. Progress in Palliative Care. 1996;4:167-168.
    
    
17. Waller A. Caroline NL. Handbook of palliative care in cancer. Boston: Butterworth-Heinemann, 1996.
    
    
18. Twycross RG. Symptom management in advanced cancer, 2nd ed. New York: Radcliffe Medical Press, 1997.
    
    
19. Woodruff R. Palliative medicine: symptomatic and supportive care for patients with advanced cancer and AIDS, 3rd ed. Oxford, New York: Oxford University Press, 1999.
    
    
20. Powazki RD. Palcisco C, Richardson M, Stagno SJ. Psychosocial care in advanced cancer. Semin Oncol. 2000;27:101-108.
    
    
21. Powazki RD, Walsh D. Acute care palliative medicine: psychosocial assessment of patients and primary caregivers. Palliat Med. 1999;13:367-374.
    
    
22. Storey P. Spiritual care at the end of life. Tex Med. 2001;97:56-59.
    
    
23. Walter T. Spirituality in palliative care: opportunity or burden? Palliat Med. 2002;16:133-139.
    
    
24. Albert NM, Davis M, Young J. Improving the care of patients dying of heart failure. Cleve Clin J Med. 2002;69:321-328.
    
    
25. Lichter I, Hunt E. The last 48 hours of life. J Palliat Care. 1990;6:7-15.
    
    
26. Davis M, Frandsen J, Dickerson D, Ripamonti C. Prescribing for the actively dying patient: Principles and practice. Journal of Terminal Oncology. 2002;1:19-32.
    
    
27. Tropiano P, Walsh D. Organization of services and nursing care: hospice and palliative medicine. Semin Oncol. 2000;27:7-13.

Disclaimer