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This article describes successful institutionally-based programs for providing high quality palliative care to people with cancer and their family members. Challenges and opportunities for program development are also described.
Published literature from 2000 to present describing concurrent oncology palliative care clinical trials, standards and guidelines were reviewed.
Clinical trials have demonstrated feasibility and positive outcomes and formed the basis for consensus guidelines that support concurrent oncology palliative care models.
Oncology nurses should advocate for all patients with advanced cancer and their families to have access to concurrent oncology palliative oncology care from the time of diagnosis with a life-limiting cancer.
In 2009, cancer claimed more than 565,000 American lives, at a rate of approximately 1,500 people a day.1 As most cancers are not immediately fatal, patients will experience months to years of life-limiting illness with a relatively brief period of decline prior to death.2–5Since the early 1980s hospice services have been available to provide holistic pain and symptom management resources to patients with cancer who approach end of life (EOL) and their families. Although hospice services have been a tremendous source of care and comfort they are often “too little too late” because hospice referrals frequently occur close to the time of death.6, 7 Two Institute of Medicine (IOM) reports detailed unnecessary suffering resulting from inadequacies of the current health care system in providing end of life (EOL) care.8, 9
The goal of palliative care is “ to prevent and relieve suffering and to support the best possible quality of life for patients’ and their families, regardless of the stage of the disease or the need for other therapies.”10 (p.6) Although the idea of offering palliative care services early in the illness trajectory is not new, it was considered radical when originally proposed by the World Health Organization11. Until recently palliative care was rarely available for patients and their families early in the disease trajectory. So while it is imperative to improve cancer care systems at EOL, preventing the use of unwanted, aggressive interventions may have a greater overall impact on the quality of EOL care.3, 12, 17 International oncology and palliative care expert panels9–11, 18 have recommended early introduction of concurrent oncology palliative care (COPC) to improve patients’ quality of life and EOL care. ‘Simultaneous’ and ‘comprehensive supportive care’ are synonymous model names.19–21 The central thrust of COPC is to ensure that patient values, preferences, and treatment goals guide care throughout the illness, from diagnosis through death.
Despite demonstrated feasibility and increasing acceptance, cancer centers wishing to implement concurrent oncology palliative care still face many challenges. The purpose of this article is to first describe the structure, processes, and outcomes of COPC using one successful model of patient and family-centered oncology palliative care, and then to summarize innovative ways to overcome three key challenges of implementation: 1) ‘gate-keeping’, 2) providing quality care during care transitions, and 3) measuring outcomes of success. Readers are also referred to other excellent sources that describe program exemplars and provide guidance for program development10, 22–24.
In 1998 the Robert Wood Johnson Foundation (RWJF) program entitled “Promoting Excellence in End-of-Life Care” issued a call for demonstration projects and four cancer centers were funded to bring hospice principles earlier into the disease trajectory. 25–28 These four centers pilot-tested different models of integrated care and were able to demonstrate feasibility and acceptance by both patients and clinicians.19, 20, 28, 29 Founded on these early successes, numerous cancer organizations have developed standards and guidelines that recommend COPC from the time of diagnosis of a life-limiting cancer.9, 30, 31
According to the National Consensus Project (NCP) for Quality Palliative Care and the National Quality Forum (NQF) Preferred Practices guidelines10, 18 model palliative care programs should address the eight domains of palliative care (see Tables 1 and and2).2). However, it is generally not known to what extent palliative programs are consistent with these guidelines. A recent survey of 71 National Cancer Institute (NCI)-designated cancer centers and 71 non-NCI cancer centers was conducted to determine the availability of palliative care services in cancer centers. In that study the authors did not use the NCP guidelines, but rather defined palliative care services as “the presence of at least 1 palliative care physician”.32 (p. 1056) Using this definition virtually all NCI-designated cancer centers and 50 (78%) of the non-NCI cancer centers surveyed indicated that they had a ‘currently active’ palliative care program.
The Center to Advance Palliative Care (CAPC) is a national organization that assists hospitals and health systems nationwide to establish high quality palliative care programs (see www.CAPC.org). They describe staff models (see Table 3) that developing palliative care programs should consider with inpatient, outpatient, and community (home care) components. In Hui et al.’s survey (33), NCI-designated centers were more likely than non-NCI centers to have an inpatient consultation team (92% vs 56%; <.001) or outpatient clinic (59% vs 22%; <.001). However, few NCI and non-NCI-designated programs had dedicated acute care beds,(26% vs 20%, or institution operated hospice programs,31% vs. 42%, respectively.32
At the Norris Cotton Cancer Center (NCCC), an NCI-designated comprehensive cancer center serving a mostly rural population in northern New England, a successful COPC program for patients newly-diagnosed with advanced cancer was introduced in 1999 as the RWJF-funded Project ENABLE (Educate, Nurture, Advise, Before Life Ends) demonstration project. Over the past decade, this program has grown to a full service clinical and research program consistent with the eight domains of the NCP guidelines. From 1999–2001, Project ENABLE served 380 patients (and their caregivers) (deaths=268)12, 28. The aims of the project were to determine whether: 1) a palliative care intervention could be implemented in three distinctly different cancer care systems (an NCI-designated cancer center, a community ambulatory private practice, and a rural cancer outreach clinic), and 2) the intervention could be initiated at the time of diagnosis of advanced stage cancer. Patients with advanced lung, gastrointestinal, and breast cancer were eligible to participate. The ENABLE intervention consisted of an advanced practice palliative care nurse (APPCN) and a series of in-person, group psycho-educational seminars called Charting Your Course (CYC). The APPCN met with each patient to conduct a broad palliative care evaluation that covered physical, psychosocial, spiritual and functional needs of the patient. She was then responsible for coordinating care within the cancer center and in the patient’s community in order to meet these needs. Patients were followed by the APPCN during cancer center visits and by phone until death. CYC was a four-session seminar series for patients and family members that covered a broad array of topics including learning problem-solving skills, managing symptoms, financial information, complementary therapies / nutrition, family issues, community resources, spiritual issues, decision making and advance care planning, overcoming barriers to communication with clinicians and family, and dealing with unfinished business, loss, and grief. The materials for the seminars were also available in a self-help, manualized format for patients who could not attend the seminars in person.
Despite positive results, a number of problems emerged. First, the authors discovered that one APPCN could not evaluate and follow all eligible patients on a face-to-face basis. The number of patients who were interested in participating in the program and the hectic nature of the oncology clinics made one-to-one interactions for all patients impossible. Although many enrolled patients were interested in attending the CYC seminars, approximately 50% could not attend because of distance, lack of transportation or other limiting physical factors. Consequently, the essential content of the CYC intervention was provided by the APPCN over the phone and by sending materials via mail, both of which turned out to be effective strategies. Based on this experience and the success of other phone-based interventions being tested in the institution’s community practices,33, 34 the authors provided the intervention by phone in a subsequent randomized clinical trial (RCT)35.
Second, the intervention was not designed to have the robust clinical interaction offered by an interdisciplinary team. So with generous support from a philanthropic donor, an internationally recognized leader in palliative medicine was recruited to construct an interdisciplinary palliative care clinical team. And finally, the original demonstration project was designed only as a feasibility project. To determine effectiveness relative to patient and family outcomes, the program was subsequently tested in the ENABLE II RCT (R01 CA101704) (N=322; deaths=231).35 Although the clinical palliative care program at NCCC now extends to non-cancer patient populations this article focuses on the program as it relates to cancer patients.
In the NCCC ENABLE COPC model, illustrated in Figure 1, patients are managed throughout the cancer trajectory within the context of primary care (A, the outermost area of the diagram). Although oncology care (i.e., anti-cancer treatments) predominates (B, the darker shaded section of the diagram), COPC is introduced at the time of an advanced cancer diagnosis (C, light-colored inner section of the diagram). The theoretical orientation of ENABLE was based on the principles of prevention,36, 37 the World Health Organization (WHO) Continuum of Care model,11 and the team’s prior research using the Chronic Care Model (CCM) to develop ‘informed, activated patients’.34, 38, 40 A CCM-based telephone intervention that focused on patient activation or empowerment, an essential element of a productive clinical interaction, was successful in improving rural primary care patients clinical care and outcomes.34 Consequently, the authors adapted and tested it in the palliative cancer population in the RCT called ENABLE II.25, 28, 35 The ENABLE II intervention targeted the CCM “5 As” of behavior change (ask, advise, agree, assist, and arrange).41, 42 In ENABLE II, specially-trained palliative care advance practice nurses implemented a manualized curriculum to educate patients in problem-solving and communication skills. The goal was to empower patients to: 1) share their personal values, life circumstances, and expectations for care with their clinicians; 2) achieve their desired level of participation in decision-making;43 and 3) identify needed information for symptom self-care to manage the predictable biopsychosocial challenges of advanced, life-limiting cancer. As seen within section C of Figure 1, the CCM “5 As” comprise the palliative care counseling domains: patient activation, decision support, goal setting, problem-solving, and coordination.41
As the effectiveness of disease-modifying anti-cancer treatments lessen (section B), the use of palliative care strategies increases (section C). If complex palliative care issues arise, other specialists may be consulted (e.g., Pain Service for placement of an intraspinal pain pump) (section D in the diagram). Towards the end of life, hospice services (section E in the diagram) may be integrated to provide more intensive support in the home and community including bereavement support for family members following the patient’s death. Finally, as family members transition back to primary care, hospice support decreases. Dashed lines in the diagram signify ‘porous’ boundaries between different care systems.
The ENABLE II RCT outcomes showed that compared to a usual care control group, intervention participants had higher quality of life (QOL) and mood on the assessments following the intervention and prior to death. Post-hoc analyses revealed an unexpected finding--intervention participants had a lower risk of death in the year after enrollment (hazard ratio 0.67 [95% CI, 0.496–0.906] p = 0.009) and a median survival of 14 vs. 8.5 months (p = 0.14).35
Although the ENABLE COPC model preceded publication of the NCP guidelines,10 all eight NCP domains were addressed in the model. The program now consists of integrated, interdisciplinary clinical and research teams that provide care via outpatient and outreach clinics, phone-based prospective and follow-up care, and inpatient consultation, including oversight of EOL care on an inpatient oncology/hematology special care unit. As a tertiary center in a predominantly rural environment, the palliative care service collaborates closely with dozens of community-based hospice programs across Northern New England. Additionally, a focused effort, called the North Country Palliative Care Collaborative (NCPCC) (funded by the Tillotson Foundation)44 is comprised of 150 individuals, representing hospitals, home health and hospice agencies, nursing homes, physicians’ practices, community pharmacies, and other social service providers. The goal of the NCPCC is to raise community awareness and to provide palliative and EOL care expertise to address the specific challenges of providing palliative care in rural communities. The knowledge and specialized resources developed will contribute to national standards for best practices in serving rural populations.
The next stage of development for the program is to expand this care model to other oncology patients including those who are not based exclusively at the cancer center, but rather receive their oncology care primarily in their own communities. Although this intervention was originally tested in ‘poor prognosis’ solid tumor patients, a follow up RCT is now testing this approach in patients with hematological malignancies. Research indicates that palliative care is frequently not offered to this population.45, 46
Despite many successes, the program has faced a number of challenges. The three challenges that have been of greatest concern and are common among both developing and mature COPC programs are: 1) establishing structures and processes to identify all appropriate patients and overcome so called ‘gate-keeping’ whereby patients are not referred early for COPC; 2) maintaining consistent, expert palliative care across multiple transitions of care from diagnosis to EOL; and 3) establishing relevant quality indicators to measure outcomes of providing integrated COPC. Each of these challenges is described below in more detail.
A common challenge that most programs have or will face is resistance to referral to palliative care by oncologists who are concerned that a referral to palliative care will mean the end of cancer treatment and a loss of patients’ hope, both of which may be counter to the ‘curative’ philosophy that many patients have when they go to a cancer center.47–49 Furthermore, even oncologists who believe in the supportive care available from palliative care specialists may fear that they will lose control or contact with their patients and patients will feel ‘abandoned’ by the oncology care team.50 Hence, some oncology clinicians may use ‘gate-keeping’ to prevent their patients from being referred to COPC, especially early in the diagnosis when ‘active’ cancer treatments are still being explored.
A number of innovative approaches can overcome clinician gate-keeping. Initiating palliative care in the outpatient setting as recommended by the NCP and NFQ10, 18 is one strategy that has been used to overcome negative biases that palliative care is only appropriate at EOL or after all other anti-cancer or disease-focused treatments are exhausted. Hui et al.32 reported that while the majority of cancer centers reported a palliative care presence, less than half had an outpatient component to care. They pointed out that because oncology care is provided primarily on an outpatient basis, the lack of outpatient palliative care could decrease referrals, coordination of care, and communication among clinicians.
Placing palliative care services within the geographical region of the oncology clinic, when feasible, provides real time collaboration on mutual patients and ongoing opportunity for palliative care education with attending physicians, medical and nursing students, residents, and fellows. Having geographic presence begins to normalize COPC, and has the added potential benefit of having palliative care appointments in tandem with oncology or chemotherapy appointments. This patient-centered approach to care is particularly valuable for patients who travel some distance for appointments.
Another challenge related to ‘gate-keeping’ is the name “palliative care”. Fadul and colleagues21 examined clinician comfort with referring to a palliative care versus a supportive care service. They found that there was more reported distress from providers and perceived distress from patients when the word “palliative” was used to describe the services, particularly when referrals were made early in disease trajectory. There was less of an issue when the referral was clearly for EOL care. An important issue is to determine if the name “palliative care” is a barrier to service use; if so, proactive and intentional education with colleagues and patients will be essential. One way the authors’ developing service dealt with this challenge was to focus first on describing the available services rather than on the term “palliative” that is, upon introduction to clinicians or patients the team described its role as ‘consultants to oncologists… that assist in the care of patients and families facing serious illness’. The team tells these individuals that it has a ‘focus on symptom management, comfort and quality of life, and can assist patients and families with complex decision making’.
Processes such as implementing a standardized care pathway or disease specific algorithm which includes palliative care consultation ensures that appropriate services are introduced to virtually all appropriate patients as part of a systematic protocol rather than at the discretion of individual clinicians.51 Currently at NCCC, the diagnoses of pancreatic cancer, stage IIIB or IV non-small cell lung cancer, extensive stage small cell lung cancer, and glioblastoma multiforme trigger an automatic referral for an introductory palliative care outpatient appointment that is initiated by the scheduling secretary following the patient’s presentation at the disease-specific tumor board (see Figure 2). Another specific trigger for referral could be offering COPC to all patients enrolled in Phase I or II clinical trials.19, 52, 53
Incorporating a Palliative Care Team (PCT) referral as part of the treatment team up front minimizes the resistance to referral later when ‘there’s nothing left to be done’. Early integration normalizes palliative care involvement and begins the process of building relationships before a crisis occurs, i.e., when patients are functioning well enough to be home and out in the community. Many palliative care issues can be better addressed prior to functional status decline. For example, studies have shown decision making around advance care planning is much less threatening when patients are feeling well,54 rather than during an inpatient crisis or when death is imminent. Psycho-emotional issues can be explored with greater ease when physical symptoms are controlled. Seemingly simple matters such as having a first meeting with the patient while he or she is in street clothes and returning home later that day may lend itself to a safer, more expansive and comprehensive experience.
To overcome gate-keeping due to clinician concerns about losing contact with patients or patients feeling abandoned, palliative care providers must maintain excellent and open lines of communication. Some electronic medical record (EMR) systems may provide a relatively simple solution to this issue. For example, using the EMR, a palliative care provider can instantly send notes to the patient’s entire team of providers including the medical oncologist, primary care physician, surgeon, and radiation oncologist. As noted earlier, geographic proximity to the patient’s oncology team also fosters regular communication and nurtures collegial relationships. Participation and invitation to attend each discipline’s interdisciplinary team meetings is an additional strategy to build trusting relationships that will maintain open lines of referral to palliative care clinicians.
According to Coleman,55 transitions of care is a set of actions designed to ensure the coordination and continuity of health care as patients transfer between different locations or different levels of care within the same location. Seamless transitions are a key element of integrated, high quality COPC models. The NCP and NQF practices (See Tables 1 and and2)2) identify “continuity of care” as an important aspect of quality palliative care. The guidelines state that palliative care is integral to all healthcare delivery system settings (hospital, emergency department, nursing home, home care, assisted living facilities, outpatient, and nontraditional environments, such as schools). Table 4 provides an example of how a newly diagnosed advanced lung cancer patient might experience smooth transitions of care using a COPC approach compared to common usual oncology care.
Many challenges exist to providing quality transitions of care for palliative oncology patients and their families. Patients require complex continuous management as they have many symptoms related to the disease or to the treatment of the disease. They may experience heightened vulnerability during care transitions and frequently require care from multiple specialists. Thus, communication of their goals of care, medications, etc, can easily “fall through the cracks”.55–57 For example, when a symptomatic patient presents to an emergency department, emergency care providers may focus only on life-saving interventions rather than symptom control. They may not take the time to discuss the patient’s goals and preferences. This can result in patients receiving unwanted diagnostics, interventions, or hospital admissions.
Other challenges include communication difficulties that are inherent in caring for oncology patients with multiple oncology specialists (such as surgeons, and medical and radiation oncologists) and primary care providers in the community.58 Rural settings and regional cancer centers who collaborate with multiple visiting nurse associations and community hospitals present unique challenges to smooth patient hand-offs. Specifically, continuity of care is difficult to maintain when patients live at a distance from the treatment center, when there are few palliative care resources in local communities, when there is variable clinical expertise in rural communities, and when there are high turnover rates of nursing and medical personnel. These high turnover rates make it difficult for cancer center-based palliative care teams to build and maintain relationships with community providers. This situation may also signal inadequate experience or palliative oncology expertise in the community which will require both immediate and long-term education and consultation to ensure that the patient and family receive the same level of palliative care services at home as they receive in the tertiary center.
Integral structures to assure continuity of care across settings include an accountable care manager or care coordinator with palliative care expertise and written plans of care that are ‘portable’ and communicated across settings.25, 55, 57 The accountable team coordinator collaborates with professional and informal caregivers in each location of care to ensure coordination, communication, and continuity of palliative care across institutional and homecare settings. Maintaining regular contact by phone, between oncology appointments with patients who are at a distance from the cancer center, may also be accomplished via telephone using the skills of a palliative care specialist triage nurse. Typical triage nurse responsibilities can include prescription refills and pre-authorizations, general symptom evaluation, medication management, on-going education about the disease, treatments, and assistance with communication to community providers including hospice. Calls to patients 1–2 days prior to clinic appointments to review symptoms can help identify patient/family needs prepare patients and clinicians for an efficient, effective visit. Although input is primarily via the telephone, providing occasional opportunities for the triage nurse to participate in outpatient care, may enhance future telephone interactions.
Regardless of care location or level, the advanced cancer patient’s care should be based on a comprehensive care plan that is available to all providers so that the patient’s goals, preferences and clinical status are well-communicated.57 Components of the transitional care plan include logistical arrangements such as getting to the clinic, advance care planning preferences, patient and family education, and coordination among the health professionals involved in the transition. A primary area of attention is proactive management to prevent or address care desired in the event of crises and the avoidance of unnecessary transfers. An essential element of the documented care plan is documentation of the patient’s values and preferences for care in the form of an advance directive or advanced care planning note. This information must be readily accessible to all members of the medical team. This note can communicate the patient’s wishes regarding a surrogate medical decisions maker, preferences for specific life-prolonging treatments, and code status. Additionally, a checklist can be used when transitioning a patient from hospital to home hospice, which will remind the discharging team of certain important steps to providing a smooth transition to home and to the care of the hospice team and primary care clinician. With the patients’ goals and preferences in mind, items that are necessary to check off as completed include medications for crisis management, ensuring that the pharmacy carries the prescribed medications, verifying who will be overseeing the patient’s medical care at home, identifying who the patient will call in a crisis, and electronically sending the palliative care consultation.
Maintaining continuity when a crisis occurs is particularly challenging, but is also one of the most important times for the patient to have the attention of familiar care providers. The authors’ program found a creative way to do this by developing an automated system that notifies the PCT that a patient from the outpatient setting has been admitted to the hospital. This type of automated system allows for patients to have continuity across care settings and fosters communication of the patient’s goals, preferences, medications and clinical status during the hand-off from the outpatient team to the inpatient team. This system, called the “outs who are in” program was developed to provide continuity of care across settings. During the morning interdisciplinary meeting, these patients are identified through a tracking system in the EMR and the team is notified of their admission. The patient’s clinical status and goals are discussed and these patients are then added to the inpatient team consult list. Team consultation may range from supportive care visits from the team chaplain, to attention from the social worker, healing arts practitioner, or volunteers. However, some patients will also require expert communication and consultation for symptom management or integrating known preferences for care into the inpatient and discharge care plans.
Once a COPC program is in place another on-going challenge is to continuously measure and demonstrate program outcomes that are valuable to patients, families, administrators, and insurers. Demonstration of value added may be needed to secure initial or ongoing funding of a new palliative care clinical program. Every program should have a plan to measure and monitor its effect on the quality of patient care, ideally beginning prior to and then at the inception of the new program. Some measures will be useful for internal planning for staffing, need for program growth, and productivity. These same measures could then be compared to other programs as external benchmarks, especially for newer programs under development. Ultimately the data collected can be used to assure that high quality palliative care is provided across organizations.59
A number of frameworks exist that provide a foundation for assessing quality indicators in palliative care.60 10, 61, 62 Table 5 summarizes four key areas to consider in determining important metrics to continuously or intermittently monitor selected outcomes. Since the publication of NCP guidelines and NQF preferred practices (see Tables 2 and and3)3) consensus is building regarding essential domains and outcomes to measure different aspects of program evaluation. Although a comprehensive discussion of recommended metrics is beyond the scope of this paper, the reader is directed to recently published consensus recommendations to measure hospital-based palliative care programs24, consultation services,59, inpatient units,63, and clinical care and patient satisfaction.64
Measuring cost outcomes or cost effectiveness may also be a critical feature of program evaluation. The cost savings or ‘cost avoidance’ due to involvement of the palliative care team, especially in complex cases, is important, but can be more difficult to quantify and measure than direct revenue for services performed. While clinicians are tempted to proffer anecdotes of cost savings by descriptions of clinical encounters, administrators are more interested in data demonstrating improved symptom management, reduced hospital days, consumer satisfaction or cost savings generated by rational use of resources. As stated in a recent review of this topic, “Programs need to be able to demonstrate that they are providing value, and data provide a means of doing that.” 65 (p. 544) Recent reviews of palliative care influences on costs provide examples of how COPC programs may wish to evaluate their comparative effectiveness66–68
Three important challenges in measuring palliative care outcomes are: 1) whose perspective should be captured?, 2) who will do the ‘measuring’?, and 3) are there appropriate tools that are reliable and valid to capture data that will be meaningful? Data sources include patients, proxies (i.e., family caregivers), clinicians, and administrative data bases. Each has pros and cons to consider that should relate specifically to the question to be answered. Measuring outcomes can be costly in terms of staff time or identifying non-staff interviewers, chart auditors, or other data collectors. This is perhaps one of the bigger barriers to all programs having an active measurement component. Finally, although many tools have been developed and used in research, clinically meaningful tools for gathering data from patients who are seriously ill are only beginning to be developed and there is more controversy than consensus.12, 69–71
Although measurement of outcomes for program evaluation and quality improvement are important, continued development of rigor in measuring outcomes in the oncology palliative care research settings will ultimately provide the evidence base to ensure that palliative care will continue to flourish in the era of health care reform and limited financial resources. Health services researchers and others with expertise in measurement of palliative care outcomes are equally essential to the interdisciplinary team in managing the physical, psychological, social, and spiritual needs of patients with advanced cancer and their families.
It is clear that the specialties of oncology and palliative care each provide unique contributions to the care of patients with advanced cancer.52 There are increasing examples of successful programs that offer early and integrated care to this population. However, new and existing programs will continue to face the challenges of identifying and intervening early in the disease trajectory, using effective interdisciplinary team approaches that match the unique challenges of geography, culture, and available expertise and resources. Foundational resources are now available in the form of consensus guidelines and measurement practices so that future oncology patients and their families can be assured that they will have access to high quality care regardless of the length of their survivorship.
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