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Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, First Avenue at 16th Street, New York, NY 10003, USADepartment of Family and Social Medicine, Albert Einstein College of Medicine, 1300 Morris Park, Bronx, NY 10461, USA
The first use of the word “palliative” as applied to the field was in early 1975 when the first Palliative Care Service of the Royal Victoria Hospital in Montreal was established. The hospice movement was started and spread rapidly in the late 1960s. The pioneering work of Cicely Saunders in London and Florence Wald in New Haven established the foundations of the modern hospice and palliative care movement and highlighted the end-of-life care needs of patients with advanced malignant disease. The Medicare hospice benefit was designed to limit access to patients who were dying of terminal illness, which led to late hospice referrals and reduced access for hospice care for patients with advanced chronic illnesses (Fig. 1).
Palliative care began to be defined as a care model for the terminally ill in the 1970s and came to be synonymous with the physical, social, psychological, and spiritual support of patients with life-limiting illness, delivered by a multidisciplinary team. The transition period from curative care to palliative care can be one of the most difficult phases of caring for patients with advanced chronic illnesses. The treatment goals change from life-prolonging treatment to symptom control and quality of life. Palliative care originally referred to the care of patients with terminal illnesses, but now it refers to the care of patients with advanced chronic illnesses (Fig. 2). The stark redirection of goals may fit only a few patients’ expectations from health care providers. Most patients want palliation of symptoms; and most are well served by some preparations for dying, even while there is substantial hope to prolong life with “aggressive” treatment.
In fact, most patients are probably best served with a model that mixes treatments to correct physiology (or to extend life) with treatments aimed at symptom control and alleviation of disability. Studies of the use of palliative care have found that patients with chronic, incurable conditions generally report a much better quality of life when they receive palliative care than patients who do not. In the past 2 decades, we have tried to improve end-of-life care, have granted patients the “right to refuse treatment,” have introduced advance directives, and have supported physicians’ claims that a treatment would be futile.
The groundbreaking randomized clinical trial by Temel and her colleagues
evaluated the impact of early palliative care on the care of patients with metastatic cancer. The study showed that specialty-based palliative care improved quality of life (QOL) and reduced the use of aggressive end-of-life care. Patients who received palliative care rated their quality of life as being significantly higher than those who did not receive palliative care (98.0 vs 91.5 on the Functional Assessment of Cancer Therapy-Lung scale, P = .03).
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. Palliative care:
Provides relief from pain and other distressing symptoms
Affirms life and regards dying as a normal process
Intends neither to hasten nor postpone death
Integrates the psychosocial and spiritual aspects of patient care
Offers a support system to help the family cope during the patient’s illness and in their own bereavement
Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated
Enhances quality of life and may also positively influence the course of illness
Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Why do we need palliative care?
Modern medicine has helped in the growth of the number of older adults with chronic illness. Although the current generation of older people is less disabled than its predecessors, the probability of functional dependency, cognitive impairment, and living with advanced chronic illness increases with age. According to the Federal Interagency Forum on Aging-Related Statistics, between 1981 and 2008, age-adjusted death rates for all causes of death among people age 65 and older declined by 21%. Heart disease and cancer are the top 2 leading causes of death among all people age 65 and older, irrespective of sex, race, or origin. Americans are living longer than ever before. Life expectancies at both age 65 and age 85 have increased. Under current mortality conditions, people who survive to age 65 can expect to live an average of 18.5 more years, about 4 years longer than people age 65 in 1960.
In 2007, 42% of people age 65 and older reported a functional limitation. Individuals with 5 or more diseases are the largest consumers of health care and account for two-thirds of all Medicare spending.
Overall, hospitalization rate was 336 per 1000 Medicare enrollees in 2007. Skilled nursing facility stays increased significantly from 28 per 1000 Medicare enrollees in 1992 to 81 per 1000 in 2007. The number of home health care visits increased to 3409 per 1000 enrollees in 2007. After adjusting for inflation, health care costs increased significantly among older Americans from 1992 to 2006.
In the United States, the health care system is structured around easy access to hospital care and does not have a good support system for community-based organized care for chronically ill patients. Despite being one of the highest spenders for per-capita expenditures, recipients of health care services are not satisfied with the care system in the United States.
Hospice providers grew by more than 30% between 1997 and 2007 in the United States. The reasons for the growth in hospice use include increased hospice services in nursing homes, growth in the aging population living with advanced chronic illness, and greater recognition of hospice benefit.
As the population continues to age in the United States, we will be faced with greater number of patients with advanced life-limiting illnesses. Health care providers will be needed to provide optimal care for these patients. The Institute of Medicine has made several recommendations regarding end-of-life care.
Some of these recommendations include the following: (1) People with advanced potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care. (2) Health care professionals must commit themselves to improving care for dying patients and to using existing knowledge effectively to prevent and relieve pain and other symptoms. (3) Educators and other health professionals should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to provide appropriate care for dying patients. Today, in New York State, physicians and nurse practitioners are required to offer to provide terminally ill patients with information and counseling concerning palliative care and end-of-life care options.
Illness trajectories and prognostic estimates
Excellent palliative care begins with an understanding of disease processes and trajectories, end-stage disease indicators, and the clinician prediction skills needed at each stage of the dying process.
studied 4 types of illness trajectories and described different patterns of dying: sudden death, cancer death, death from organ failure, and frailty. The study included 14,456 participants from 4 US regions and was called the Established Populations for Epidemiologic Studies of the Elderly (EPESE) study. The trajectories of functional decline for the 4 categories differed markedly. Only short-term expected deaths are likely to have a predictable terminal period. Patients with cancer do not usually suffer severe functional disability until the final stages. The illness trajectory therefore is of a slow overall decline until a relatively rapid decline in function toward the end of life (Fig. 3). Patients with far-advanced noncancer illnesses and high risk of death may have slowly declining health and relatively good functional status, such as patients with ischemic heart disease (see Fig. 3).
Deteriorations may be associated with hospitalizations and intensive care unit (ICU) admissions. This pattern also applies to those dying from chronic lung disease, with a similar pattern of acute relapse, active treatment, and improvement, but underlying steady decline and sudden death is always a possibility. In fact, the risk of sudden death for patients with advanced heart failure is 6 to 9 times that of the general population.
This trajectory may not be true for all patients with organ failure. The high levels of comorbidity with renal disease (especially cardiovascular and cerebrovascular disease) make this trajectory particularly difficult to predict. Those with dementia or general frailty have a much lower baseline level of functioning, with a declining but variable downward course toward death (see Fig. 3). In patients with an “entry–reentry” pattern, such as heart failure and chronic lung disease, decisions about when palliative care is appropriate are particularly difficult.
Studies assessing the accuracy of the physician’s clinical prediction are conflicting and contradictory; however, some investigators consider that it tends to overestimate survival by a factor of 3 to 5
and is overly pessimistic in only 20% of cases. Clinical predictions of survival seem more accurate for short-term than long-term survival. Therefore, for greater accuracy, survival estimates must be considered in conjunction with more widely used criteria, such as biochemical findings and comorbidities. Physicians, patients, and families can all become accustomed to periods of severe illness, with subsequent improvement, which may detract the provider from awareness of the overall decline. Patients may be well known to their general practitioner or specialist over a long period, a factor known to contribute to a more optimistic prognostic assessment by the clinicians.
Palliative medicine is facing the need for finding ways to help patients in whom a serious chronic illness presents with unpredictable illness trajectory, ongoing sudden exacerbations, and high risk of sudden death. Palliative care must also include frail elderly patients who have diminishing reserve capacity. What makes the trajectory even more complex is the difficulty in predicting who is at risk for sudden death and the limitation of clinical prediction models to identify the terminal phase of the disease.
With the rise in prevalence of advanced chronic diseases in the United States, there is a compelling need to adopt comprehensive models of disease-specific palliative care that are responsive to the ongoing challenges of living with an unpredictable chronic illness that is marked by a high death rate.
The identification of prognostic and predictive factors concerning both life expectancy and quality of life in patients is very important to facilitate ethical, clinical, and organizational decisions, but also to use resources as efficiently as possible. A life expectancy of 6 months or less is required for admission to government-funded hospices. Predictive models in palliative care should mainly concern the prognostication of life expectancy with the following objectives
To inform patients, families, and caregivers about the prognosis, in an appropriate culturally sensitive way within the patient-physician relationship, so as to involve them in the decision-making process
To make clinical decisions concerning withdrawing curative-intent therapies
To make clinical decisions regarding the use of oncologic therapies, such as chemotherapy/radiotherapy with palliative intent
To minimize the risks of undertreatment or overtreatment
To define the “appropriate time” for initiating a certain palliative option
To establish the most appropriate therapy for symptom control in each individual patient
To select the most appropriate setting of care (hospital, hospice, home care)
To answer the patient’s question: “How long do I have to live?” with the aim of helping patients, families, and caregivers to make personal decisions and plans.
Prognostic tools in palliative care
There have been several studies of prognostic indicators of survival for advanced cancer patients and less attention has been paid to noncancer but equally life-threatening illnesses. Data derived from prospective studies are scant. Four systematic reviews on survival prediction in terminally ill patients have identified a set of prognostic factors that are found to be predictive of survival time. These studies have taken the following into consideration: clinical prediction of survival, performance status, some physical symptoms, some biologic markers, some psychosocial and economic variables, and tumor type and cancer stage.
Although prognostic tools have been shown to improve survival prediction accuracy, only a few have undergone independent validation. Two of non–disease-specific prognostic tools, the Palliative Prognostic (PaP) score and the Palliative Prognostic Index (PPI), have been validated in different settings, countries, and in terminally ill cancer patients.
The PaP score was developed in the 1990s as the end result of a series of prospective, multicenter Italian studies that aimed to identify clinical and biologic factors relevant to the prognosis of patients with advanced cancer referred to hospice, and then to produce a composite of those factors as a prognostic index. Survival times were measured from the date of study enrollment, and the outcome was death from all causes. The score includes the following clinical and biologic variables: (1) symptoms such as dyspnea and anorexia (presence or absence); (2) Karnofsky Performance Score (KPS) (Table 1); (3) clinical prediction of survival, ranging from 1 to 2 weeks up to 12 weeks; (4) total white blood cell count; and (5) lymphocyte counts (classified as normal, high, or very high). A numerical partial score is given to each variable, based on the relative weight of the independent prognostic significance shown by each single category in the multivariate analysis. The sum of the single scores gives the total, which can range from 0 to 17.5. The higher the score, the lower the likelihood of survival at 30 days.
The prognostic variables of the PPI are the following: KPS, amount of oral intake, presence/absence of edema, dyspnea at rest, and delirium. A numeric partial score was given to each variable, and the sum of the single scores gives the total, which ranges from 0 to 15. Patients were stratified into 3 groups depending on their score (Group A: PPI ≤2; Group B: PPI of 2 to ≤4; and Group C: PPI >4). When a PPI greater than 6 was adopted as a cutoff, 3-week survival was predicted with 80% sensitivity and 85% specificity. When a PPI greater than 4 was used as a cutoff, 6-week survival was predicted with 80% sensitivity and 77% specificity. The PPI can acceptably predict whether a patient will survive for longer than 3 or 6 weeks.
Clinical prediction estimates, palliative scores, dyspnea, anorexia, dysphagia, delirium, leukocytosis, and lymphocytopenia are all considered factors of primary importance in survival prognosis in patients with advanced solid cancers. However, further research is still needed to better identify the prognostic factors for survival in palliative care patients at any stage of a wide spectrum of diseases. On the other hand, we should keep in mind that PaP scores and the PPI are like other survival estimate tools and predicted results are only a number that acts as a guide.
Estimating survival remains an inexact science, but prognostic uncertainty should not prevent us from talking with our patients when the question arises. Over the past decade, we learned to ask, “Is this patient sick enough that you would not be surprised to find that he or she had died 6 months (or a year) from now?” The patients who are “sick enough to die” are usually appropriate targets for the care that recognizes the eventuality of dying, even if any particular patient may live for many months.
Educating physicians in palliative care
Despite increased societal concern about end-of-life care issues, there is no clear indication that care for most patients with advanced life-limiting illnesses in the United States has dramatically improved. Most physicians, residents, and medical students have received sporadic and nonstandardized training in the principles and practice of palliative care.
Between 1989 and 1994, the Robert Wood Johnson Foundation funded a large study called SUPPORT, the Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment, to improve the care given to seriously ill hospitalized patients by having patients and their families discuss their treatment options with trained nurses. The study has shown that most patients were receiving aggressive life-prolonging treatments and had heavy symptom burden.
The results of the study were conveyed to treating clinicians, but did not have a big impact on the care of terminally ill patients. Thus, the Robert Wood Johnson Foundation has started a multiyear, multidisciplinary effort in collaboration with the Open Society Institute’s Project on Death in America to improve the care given to patients with serious, life-threatening illnesses. As palliative care enters mainstream medicine, we are now witnessing major efforts to improve the care of patients with advanced chronic diseases as they approach the terminal phase.
Previous studies showed that palliative care content in general medical and subspecialty books was very vague.
In 2000, the Liaison Committee on Medical Education added a requirement in end-of-life care and doctor-patient communication. The American Board of Medical Specialties (ABMS) approved subspecialty status for palliative medicine in 2006 and the first official ABMS-certified board examination for physicians was given in 2008 (see Fig. 1). Teaching palliative care for both undergraduate and graduate levels has been improved in past 10 years.
However, finding the resources to pay the faculty to teach palliative care has been challenging for most teaching hospitals.
Nursing education in palliative care
Expertise in symptom assessment, communication, and advocating well-communicated care are core competencies for nurses. Nurses hold a very important position in delivery of palliative care and home hospice care. The End-of-Life Nursing Education Consortium (ELNEC), administered by the American Association of Colleges of Nursing, has prepared and disseminated palliative care resources for undergraduate and graduate levels.
Nurses have developed formal accreditation requirements and certification examinations for nurse practitioners and registered nurses. The National Board of Hospice and Palliative Care Nurses has been offering certification examinations for advanced practice nurses and registered nurses.
Research in palliative medicine
Research, professional education, and clinical practice are convening to provide substantial improvement in care for people with serious chronic diseases. In a systemic review, researchers found that strong to moderate evidence supports interventions to improve important aspects of end-of-life care and many critical issues still lack high-quality evidence.
found weak evidence for the effectiveness of specific palliative service delivery innovations for managing pain and dyspnea, no evidence addressing pain management in advanced noncancer conditions, and insufficient evidence addressing dyspnea in cancer and heart failure. They identified research priorities about short-acting antidepressants and caregiving challenges in populations other than patients with dementia and reported important research gaps in the field. In 2008, the article “Putting evidence into practice: palliative care” was released as a valuable source. http://clinicalevidence.bmj.com/downloads/end-of-life.pdf.
Hospice programs have been established in many countries, often showing that good care for the end of life is within reach for a wide array of patients and cultures. The American Academy of Hospice and Palliative Medicine and the National Institutes of Health have called for investments in palliative care research because of the lack of evidence base in the field, and because models of care delivery need to be improved. But federal funding for palliative care research remains inadequate.
The National Palliative Care Research Center was established in 2005 to develop a new generation of researchers in palliative care. From July 1997 through July 1998, the Center to Improve Care of the Dying and the Institute for Healthcare Improvement sponsored a collaborative quality improvement endeavor for 48 teams from as many health care programs.
All aimed to improve care for persons facing the end of life. They formed goals, devised measurements, and tried innovations. The Institute of Medicine has released 2 more reports: “Improving palliative care for cancer” and “When children die: improving palliative care and end-of-life care for children and their families.”
For more than 20 years, the Dartmouth Atlas Project has documented variations in how medical resources are distributed and used in the United States. The project uses Medicare data to provide information and analysis about national, regional, and local markets, as well as hospitals and their affiliated physicians. Researchers have shown wide regional variation in health care resource use, and care effectiveness during chronic illness.
The data suggest that extra spending on doctors’ visits, consultations, tests, and frequency of hospitalizations in the high-use regions do not necessarily buy longer and better life for Medicare beneficiaries. According to the Dartmouth Atlas Project’s first-ever report on cancer care at the end of life released in November 2010, whether Medicare patients with advanced cancer will die while receiving hospice care or in the hospital varies markedly depending on where they live and receive care. The researchers found no consistent pattern of care or evidence that treatment patterns follow patient preferences, even among the nation’s leading academic medical centers. Across the United States, about 29% of patients with advanced cancer died in a hospital between 2003 and 2007. A link to the full study can be found at www.dartmouthatlas.org.
Palliative care in hospitals
The number of palliative care teams has been increased over the past decade and teams are available at most US hospitals, including more than 75% of large hospitals and all Department of Veterans Affairs medical centers.
The National Consensus Project for Quality Palliative Care (www.nationalconsensusproject.org) has developed Clinical Practice Guidelines for Quality Palliative Care. Palliative care teams including a physician and/or advanced practice nurse, nurse, social worker, and/or chaplain have demonstrated dramatic improvement in quality of care in symptom management,
and cost. Patients receiving inpatient palliative care consultation are more likely to receive follow-up services, such as home care services, hospice care, and nursing home placement when compared with usual care patients matched on age, mortality risk, and disease severity.
The palliative care team acts as a consulting service within a hospital. The team should ideally be available 24 hours a day, 7 days a week. Generally, a palliative care team is invited by the patient’s attending physician to provide the following services
Communicate with patient/family regarding goals of care
Assess for hospice eligibility and discharge planning
Provide emotional support
Arrange transfer of patient to a palliative inpatient unit.
Palliative care professionals provide consultative services not only to medical and surgical wards and emergency rooms, but also to adult and pediatric ICUs. Because rates of mortality and other unfavorable outcomes are relatively high in ICUs, many critically ill patients and their families have palliative care needs. Today, many critical care physicians are supporting educational efforts targeted to physicians, nurses, and other staff members of the critical care team. Several studies have shown that integrating palliative care services to improve quality of care in the ICU were associated with reductions in use of nonbeneficial ICU interventions, length of ICU stay, and conflict over goals of care.
Most patients with life-limiting illness are trying to manage complex chronic illness at home with minimal support from the insurance system. Moderate evidence supports the ability of multidisciplinary interventions that target continuity to affect outcomes of use in advanced illness. Strong evidence derived from many high-quality randomized clinical trials shows that reducing readmissions and other inappropriate use in advanced heart failure is possible, and the evidence is more consistent among more comprehensive and multidisciplinary approaches.
suggest that outpatient palliative care clinics are a “new frontier” for palliative care, but the growth of outpatient clinics has been hampered by poor reimbursement, limited space, and lack of palliative care staff. Many clinics support the patients referred by an inpatient palliative care program. Palliative care outpatient clinics may provide supportive care for patients with cancer; patients with human immunodeficiency virus (HIV); and patients with chronic advanced illnesses, such as end-stage heart disease, lung disease, and neurologic disease.
Hospice Palliative Care Programs
Hospices are discovering that hospice does not meet the needs of all patients. Terminally ill patients may not meet the stringent criteria of the hospice conditions of participation, and there are patients who refuse to elect the hospice benefit for several other reasons. A few large community hospice programs, such as the Metropolitan Jewish Hospice and Palliative Care Program in New York and the Hospice of the Bluegrass and Palliative Care Center of the Bluegrass in Lexington, Kentucky, are offering palliative care consultation services for patients cared for at home or in nursing homes. These programs can provide a smooth transition from usual care to hospice care for patients whose illnesses progress to the level where they are eligible or willing to receive hospice care. These hospice palliative care programs are model services that heavily depend on philanthropic support. Palliative care services may not be available across the country until financial support is provided for patient-centered services in the community.
Home Health Palliative Care Programs
Home health care agencies that meet the Medicare guidelines for home health services are beginning to introduce palliative care into their programs in various ways. In one study, patients with a prognosis of approximately 12 months to live were randomized into usual (n = 155) versus palliative in-home care (n = 155). Usual care was services provided through the Medicare home health benefit. Palliative in-home care consisted of an interdisciplinary team providing medical, social, and other palliative services. The study suggested significant improved patient/family satisfaction, fewer emergency department visits, lower medical costs, and increased deaths at home with palliative in-home care.
The Program of All-inclusive Care for the Elderly (PACE) and hospice programs incur a serious discontinuity at entry, but thereafter they are solidly allied with the patient and family. Fee-for-service care has little incentive to ensure continuity, to accept responsibility for patients’ experiences across multiple programs, or to ensure prevention of exacerbations. Patients with chronic serious illness could be matched with a special service array that emphasizes symptom control, family support, function, reasonable planning for death, and continuity.
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial, and spiritual. Palliative care uses a team approach to address the needs of patients and their families. This approach requires the interdisciplinary effort of health care professionals to address the physical, psychological, social, spiritual, and practical supportive needs of patients and their families. Ideally, the continuum of palliative care begins at the time of diagnosis of serious illness and creates a seamless delivery of supportive care. Palliative care complements therapies that aim to cure or modify disease process throughout an advanced illness process. It is an integral part of comprehensive care for adult and pediatric patients with life-limiting illnesses.
During the past 2 decades, palliative medicine has evolved from the hospice movement and has been recognized as a medical subspecialty. There are 3 key competencies that are central to providing general palliative care for any physician:
Providing a multidimensional assessment of the patient’s situation. “Are there issues related to communication and goal setting? Are they getting medically appropriate care? Are there unmet needs in terms of physical symptoms, psychological issues, social concerns, family difficulties, or spiritual distress? Are they informed about prognosis in a culturally sensitive way?”
Therapeutic core competency. This means providing treatment to improve those sources of distress, including skills in pain control and symptom control, as well as the ability to have conversations about tough issues like advanced care planning and choices at the end of life.
Knowledge of referral resources and willingness to refer for additional specialist palliative care. An aging population and growing incidence of multiple noncommunicable diseases has brought increased attention on palliative care as a public health issue. As the health care system faces these issues, palliative care presents an opportunity for policy makers, clinicians, and community organizations to immediately provide cost-effective care that will have significant effect on patients and their families.
There is a need to build on successful programs to provide palliative care and a need to enhance the services of long-term care facilities and home care for patients with life-limiting illnesses. Hospital palliative care teams and inpatient units are becoming a standard of high-quality care in American hospitals and ICUs.