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Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers.
A projected 1,479,350 new cancer cases in the United States will be diagnosed in 2009 and 562,340 Americans with cancer are expected to die.1 In addition, one in every four deaths in the United States is due to cancer.1 These numbers are expected to increase dramatically since the number of people over age 85 will double to 10 million by the year 2030.2 Care for the more than half a million current cancer patients with serious or advanced disease involves expert symptom management and maintenance of quality of life.
Throughout the United States, across disciplines and settings, improved care for patients is emerging as palliative care becomes available for increasing numbers of patients. Improved palliative and end-of-life care has included institutional changes, educational activities for the variety of disciplines involved in care, research initiatives to improve care, and the development of national guidelines for assessing quality cancer care. The purpose of the article is to identify the current status of palliative care, the challenges to implementing palliative care, methods to improve application of palliative care principles, and clinical implications for clinicians involved in caring for patients with serious and advanced cancer.
Palliative care is a dynamic field and is now recognized as a medical specialty with an inherent interdisciplinary nature. The focus of palliative care includes the relief of suffering for patients with life-threatening or serious debilitating illness and support for the best quality of life for patients and families.3 Coordination and partnerships with hospice programs is a major feature as palliative care continues across the trajectory of disease (Figure 1). As an interdisciplinary endeavor, the field of palliative care includes medicine, nursing, social work, psychology, nutrition, and rehabilitation, although depth of support available from each discipline varies from institution to institution.
The last few years has witnessed the reporting of a large number of palliative care programs across the United States. Data from the 2008 American Hospital Association (AHA) Annual Survey of US Hospitals shows that 1299 hospitals (31%) have palliative care programs today.4 This represents a rapid increase over the 632 programs reporting palliative care programs in 2000.4 The range of interdisciplinary support available at each of these institutions varies from the full complement of supportive services, to small consultation programs.
With such a rapid growth occurring, concern for the quality of care has emerged. Efforts to address quality have come from the national level. Two of these are outlined here: The Clinical Practice Guidelines for Quality Palliative Care and a state-by-state report card effort as developed by the Center for the Advancement of Palliative Care. These reports identify the characteristics of a quality palliative care effort, and where we are now in providing that care.
National guidelines for palliative care were initiated by the National Consensus Project for Quality Palliative Care (NCP). In 2009, the second edition of The Clinical Practice Guidelines for Palliative Care was published by NCP. The framework for these guidelines consists of eight broad domains, which guidelines identified under each domain (Table 1). Within each domain, examples of institutions that represent the successful implementation are identified. The Joint Commission (TJC) formerly known as the Joint Commission for the Accreditation of Hospitals has embedded these guidelines within their existing standards. The guidelines can be accessed at www.nationalconsensusproject.org.
The second effort to address the quality of existing palliative care practice is the State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals.5 This effort addresses the multiple needs of patients with serious and advanced disease and stresses the importance of coordinating care across medical disciplines, excellent symptom management, relief of suffering, addressing family caregiver needs, and providing excellent communication among patients, families, and health care providers. Hospitals were rated on four areas: patient access to palliative care services, patient access to palliative medicine physicians, medical student access to clinical training in palliative medicine, and physician access to specialty-level training in palliative medicine. Grades varied from A = top performers, B = On Their Way, C = In the Middle, D = Need Significant Improvement, and F = Little or No access. Distribution of scores across states revealed that differences occurred geographically with most states scoring in the middle (Figure 2).
The top performing states were Vermont, Montana, and New Hampshire, while the states with little or no access to palliative care included Oklahoma, Alabama, and Mississippi. In addition palliative care was unlikely to be part of public hospitals, demonstrating that access to palliative care support is least likely for medically underserved populations. For states where there is more access for palliative care services, patients are less likely to die in the hospital and less likely to spend time in the ICU/CCU in the last six months of life.
A number of trends in health care today decrease the chances of cancer patients having access to palliative care. These range from the limited availability of palliative care services to the philosophy of patient care that dominates our health care system.
With the aging of the United States population, the demand for cancer services will increase.6 At the same time, the supply of physicians and especially oncologists will decrease, due to a large percentage of retiring oncologists, a decrease in the number of physicians trained, and a new generation of physicians who prefer to work part-time or is specialties with less working hours and emotional demands than oncology.6 The recognition and increased use of palliative care physicians and nurse practitioners who specialize in palliative care is one approach recommended to address this workforce shortage.7 The palliative care specialist is better prepared to meet patients’ needs and can relieve the burden of care for the oncologist.6
Most patient care is disease oriented, with a focus on the tumor, the treatment approach, and specialty consultation by various medical disciplines.8 Care is usually complex and treatment involves many specialties. Following treatment, remission followed by recurrence and additional treatment is not unusual for many patients. This approach increases the need for multiple physicians and the potential for fragmentation of the individual patient’s care. The need for physician expertise outside of oncology will increase, as the cancer population ages, and co-morbidities increase. Coordination of care across this many disciplines is limited One approach to this problem has been to use navigators (lay, nurses, social workers) to assist cancer patients to move through diagnosis, treatment, and follow up care.9
Palliative care can assist in changing from a disease-focused approach to a patient-centered philosophy, where the needs of the patient and the patient/family goals are essential to planning care. Patient-centered care broadens the focus and requires clear coordination across specialties and disciplines and access to palliative care physicians and nurses.
Another aspect of care that is clearly lacking in current health care systems is the communication about patient goals and preferences for care. When patients are asked what kind of care they want when serious and life threatening disease occurs, their preferences include pain and symptom control, avoidance of prolongation of the dying process, a sense of control, concern for family burden, and an opportunity to strengthen relationships with loved ones.10 However, research does not demonstrate that patients’ preferences are adequately met. Moderate to severe pain has been reported by 60% of patients with colon cancer, 57% of patients with lung cancer between days 8 and 14 of hospitalization – a sufficient period following admission to get any pain under control.11 Family members report poor emotional support, a lack of respectful treatment, and no involvement in decision making about care.12
Ninety percent of patients say they would like to die at home.13 However, approximately 53% of all patients die in the hospital, and 24% die in nursing home. Also, death continues to occur in ICUs, and CCUs, with patients surrounded by equipment and having difficulty communicating with their families.13 The median length of stay on hospice during 2005 was 26 days; one-third enrolled during the last week of life and 10% on the last day of life..14 Reasons for the late transfer to hospice include difficulty switching to a non-treatment mode, inability to have the conversation about death with the patient and family, and reluctance of the patient and family to give up the search for a cure. A change in health care to include palliative care early in the course of cancer can begin to familiarize the family with palliative care services, start the communication about death earlier in the course of cancer treatment, and provide an opportunity for a discussion of goals of care among the physician, patient, and family.
An additional challenge to implementation of palliative care is the limited evidence for this specialty. Needed are studies that provide evidence to guide better decisions regarding symptom management, different health care models, decision-making approaches about treatment options, communication on sensitive topics such as death, and support for family caregivers.
Challenges to implementing palliative care are many and include issues from workforce deficiencies to changing models of health care delivery. Current activities in palliative care have the potential for improving many of the issues identified.
Palliative care guidelines provide a framework for the care needed for patients with serious and life-threatening cancers. Approaches to improving the application of this care include education, training, and research endeavors.
Educational efforts in palliative and end-of-life care have targeted nurses, physicians, and other disciplines associated with clinical care. These efforts are essential for clinical changes in patient care to begin.
ELNEC is a national education initiative to improve end-of-life care in the United States.15 The project uses a train-the-trainer approach to provide undergraduate and graduate nursing faculty, nursing Continuing Education faculty, staff development educators, staff nurse, specialty nurses in pediatrics, oncology, critical care and geriatrics, and other nurses with education in palliative and end-of-life care. To date, over 5,300 nurses in 50 states have received ELNEC training through these national courses and are sharing this new expertise in educational and clinical settings. This, however, represents less than 0.2% of practicing nurses. The ELNEC project is administered by the American Association of Colleges of Nursing, Washington, DC, and the City of Hope, Los Angeles, CA. The curriculum content is delivered by national nurse leaders and includes eight modules (Table 2) Details on upcoming courses are provided on the ELNEC website (http://www.aacn.nche.edu/ELNEC/).
The EPEC Project was initially developed and led by Linda Emanuel, MD, PhD at the Institute for Ethics of the American Medical Association (AMA), Chicago, IL with support from the Robert Wood Johnson Foundation.16 EPEC was designed to provide practicing physicians with the core competencies they would need to effectively manage end-of-life care. It was disseminated using a train-the-trainer model. The EPEC Project is estimated as having reached 120,000 physicians and has introduced them to the field of hospice and palliative medicine.17
EPEC-O was developed to overcome the barrier among American physicians described as tribalism. Many US physicians do not think of themselves as a physician in the general sense but look to their own specialty or subspecialty for continuing education. Thus, the target audience for EPEC-O is the practicing oncologist and the interdisciplinary team caring for persons and families with cancer. The curriculum is similar to EPEC except it only refers to patients with cancer (Table 3).
The EPEC Curriculum and the EPEC-O curriculum are available through the EPEC Project at www.EPEC.net. National courses are held on a regular basis. The entire curriculum is also now adapted for web-based distance learning and is available at the EPEC web site.
Applying what is known about appropriate palliative and end-of-life care to the improvement of clinical practice requires trained, multidisciplinary champions to assist with needed institutional changes. Several projects have focused on preparing multidisciplinary teams in palliative and end-of-life care
CAPC is a national organization dedicated to improving the lives of patients with serious, complex illness by increasing the availability of high quality palliative care services in health care settings throughout the U.S. (www.capc.org).
CAPC’s premier training initiative is the Palliative Care Leadership Centers™ (PCLC), nine leading palliative care programs across the country representing diverse settings and led by experts in the field. PCLC provides intensive, hands-on operational training and year-long mentoring to teams of hospital and hospice health care professionals involved in starting or running a palliative care program. Other CAPC educational offerings include the annual CAPC seminar, a two and a-half day program providing comprehensive training in all aspects of planning, implementing and growing a palliative care program; e-learning courses through CAPC Campus Online; audio conferences; CAPCconnect Forum, a moderated peer-to-peer discussion board; and a wide variety of tools and publications available on the CAPC website, www.capc.org.
To date, approximately 2300 hospitals and hospices and over 5,000 individuals have participated in CAPC seminars or PCLC training. Two years after training, 76% of teams that did not have a program in place at the time of training succeed in establishing a palliative care program. CAPC seminars and PCLC training are attended by a diverse population of health care professionals: 33% physicians, 21% nurses, 17% Advanced Practice Nurses, 5% social workers, and 3% clergy.
DELEtCC was an education project dedicated to improve palliative and end-of-life care through training of interdisciplinary teams from nation-wide cancer centers.
Nationally recognized palliative and end-of-life care faculty presented the three-day curriculum composed of ten modules using plenary sessions, group work, and breakout sessions (Table 4).
Between the years 2002–2005, 199 teams from 42 states completed the course and successfully implemented palliative and end-of-life care goals at their institutions.18 Dissemination of DELEtCC information continues via on ongoing availability of the course curriculum CD at http://prc.coh.org/
The ACE Project involves a two and a half day palliative and end-of-life educational experience for psycho-oncology professionals (psychologists, social workers and spiritual care professionals).19 The curriculum is conducted by a faculty in the fields of psycho -oncology and palliative care and addresses effective team functioning, collaboration, and advocacy as approaches to systemically improve the institutional delivery of palliative care. The curriculum includes nine modules and uses adult learning approaches (Table 5). Initial evaluation of the ongoing courses has demonstrated that the first 2 ACE courses were highly successful with participants rating the overall course an overage of 4.6 on a 1 – 5 scale with 5 = excellent 19 and participants actively involved in institutional change efforts to improve palliative care.20
Despite national efforts to provide professional education and support for institutional change, the evidence-base for palliation and end-of-life care is limited. Research on treatment decision-making, family care, and advance directions are just a few of the areas that need rigorous research efforts. Resources for such research, while limited, have begun to fund needed studies.
NPCRC is a unique national organization whose mission is to stimulate, develop, and fund new research directed at improving care for seriously ill patients and their families. The NPCRC specifically targets research that can be rapidly and directly translated into improved clinical practice. The NPCRC currently funds Career Development Awards for Junior Investigators and Pilot and Exploratory Project Support Grants. Currently funded projects range from quality of death in institutional long term settings, symptom control in advanced cancer, and interventions for ICU patients and families (Table 6).
The NPCRC hosts an annual research retreat that convenes researchers for presentation of cutting edge research, establishing research priorities, and promoting collaboration. The annual retreat is co-sponsored by the American Cancer Society and the College of Palliative Care of the American Academy of Hospice and Palliative Medicine. Additional information on NPCRC can be obtained from their website www.npcrc.org
The ACS has, among many research initiatives, extramural research initiatives in palliative care using Pilot and Exploratory Grants. Targeted areas include
Information on other ACS research mechanisms can be found at www.cancer.org To date, 15 pilot and exploratory projects have been funded (Table 7). Even among this small group, there is a range of focus; five studies are examining strategies to enhance communication, four on ways of minimizing pain and fatigue, two on use of measurement tools, and two on the health care systems. Four of the studies center on underserved populations
Care for cancer patients with serious and life-threatening illness and for their families needs improvement. Untreated physical symptoms, poor communication between providers and patients, and treatment decisions in conflict with patient and family preferences characterizes the current standard of healthcare for our sickest and most vulnerable patients. The field of palliative care was developed in direct response to the unmet needs and wishes of patients and their families and the accomplishments of this interdisciplinary specialty over the past decade have been remarkable. Nonetheless, serious barriers to palliative and end-of-life care implementation remain.
Clinicians are urged to learn more about palliative care in order to overcome some of these barriers. Clinicians cannot practice what they do not know, and therefore attending local and national presentations of palliative care to increase the knowledge base is an essential initial step. This can occur through local presentations, national meetings, on-line courses, and individual reading and exploration.
Next, clinicians should support the education and training of others – those involved in implementation of palliative care on an institutional level, and those with whom they work on a daily basis. Support for colleagues to attend a CAPC course, an ELNEC course, or the ACE course will result in increasing the knowledge base of the team, and prepare them for improved patient care as well as support for institutional change.
Clinicians can review new research findings for palliative and end-of-life care, and apply these findings to daily care of patients. These are generally posted on the NPCRC website. Resources to improve care for patients with serious and life threatening cancers are available through the ACS, the NPCRC, and the PRC websites. Clinicians can ask patients and families about their goals for care and collaborate in selecting treatment options.
Continued efforts are needed to overcome the barriers to successful implementation of palliative and end-of-life care for patients with cancer. The National Guidelines for Palliative Care can provide a quality yardstick evaluate current clinical practice.
In summary, multidisciplinary educational initiatives, clerical applications, and research studies have begun to move palliative and end -of-life care toward the recommendations identified in the National Consensus Guidelines. Continued efforts in all fronts will be needed to identify compassionate and appropriate care and to disseminate this care to all clinicians caring for cancer patients.
NIH/NCI Grant No. P30-CA33572-25 (Cancer Center Support Grant)
Marcia Grant, Division of Nursing Research and Education, Department of Population Science, City of Hope, Duarte, California.
Ronit Elk, American Cancer Society, Atlanta, Georgia.
Betty Ferrell, Division of Nursing and Education, Department of Population Science, City of Hope, Duarte, California.
R. Sean Morrison, Brookdale Department of Geriatrics and Adult Development, Mount Sinai School of Medicine, New York City, New York.
Charles F. von Gunten, Center for Palliative Studies, San Diego Hospice and Palliative Care, San Diego, California.