Palliative Care: Expanding Role and New Approaches

(http://www.im.org/Publications/Insight/Archives/2010/V8I3/Pages /PalliativeCareExpandingRoleandNewApproaches.aspx) PALLIATIVE CARE Palliative care focuses on the relief of suffering and achievement of optimal quality of life for patients, their families, and caregivers through ameliorating physical symptoms, relieving psychological impact including distress and despair, addressing social and interpersonal concerns, and promoting spiritual well-being (1). Spanning diseases and often delivered simultaneously with lifeprolonging and curative therapies, it occupies a unique position in medicine. Due to a coalescence of trends, including the aging of the American population, greater burden of chronic versus acute illness, increases in comorbidities among those with advanced disease, and rise in health care expenditures often partly due to overtreatment, palliative care is rapidly evolving and expanding its role. Growing recognition of the field of palliative medicine reflects an increase in awareness of and demand for palliative care. Palliative medicine was recognized as a medical subspecialty in 2006 by the American Board of Medical Specialties and Accreditation Council for Graduate Medical Education (ACGME), in 2007 by the American Osteopathic Association, and in 2008 by the Centers for Medicare & Medicaid. There are now 62 ACGME-accredited palliative medicine

training programs. The number of hospital-based palliative care and hospice programs has increased from 632 (15% of hospitals) in 2000 to 1,027 (25% of hospitals) in 2003 (2); the American Hospital Association reported 1,412 hospital-based palliative care programs in 2007. Health care organizations offering palliative care recommendations now include University Healthcare Consortium, National Quality Forum Framework, National Comprehensive Cancer Network, American Cancer Society, Institute for Clinical System Improvement, and American Hospital Association. Unique features characterizing palliative care highlight its relevance in the panoply of health care services and are shaping its evolving role. Unlike other disciplines, the primary focus of palliative care is the relief of suffering (versus cure or slowing of the disease process); the patients experience is paramount. In fact, the impact and effectiveness of palliative care is judged independent of traditional outcomes such as death or cure (3). Caregiver outcomes, such as psychological distress and fatigue, are important targets of monitoring and intervention in palliative care. Patients receiving palliative care comprise a highly heterogeneous population, spanning diseases, ages, and most other categorical divides. They receive care in various settings, ranging from hospital-based palliative care units to outpatient clinics, freestanding hospices nursing facilities, and the home. Palliative care is inherently interdisciplinary, involving physicians, nurses, social workers, counselors, chaplains and other clergy, and individuals such as music therapists and complementary and alternative medicine providers. Care is planned and delivered in a team context; the approach coordinates the contributions of various care providers to optimize the well-being of the patient as a whole person (Figure 1). Several current trends in palliative care merit attention by leaders in academic medicine. Primary of these are ongoing efforts to both standardize practice and develop new models of care, increasing recognition of the need for better palliative care training for all health care providers, and growth and expansion of palliative care research. Recent years have witnessed a rapid growth in hospitalbased palliative care programs; a Center to Advance Palliative Care analysis released in April 2010 reported that the number of palliative care programs in hospitals with 50 beds or more increased from 658 to 1,486 (a 126% increase) between 2000 and 2008 (4). New models of transitional care delivered outside the hospital, such as outpatient palliative care clinics and office-based consultations, are also emerging in the effort to bridge settings where palliative care services are provided (5). New methods of data collection and management, in particular ones leveraging health information technology and electronic records, offer mechanisms to improve

continuity of palliative care (6). Recognition of unmet symptom management needs across the disease trajectory is motivating the incorporation of palliative care earlier in the disease care process, and ideally as a supportive option throughout the full continuum of care (Figure 2). As we move into an era of evidence-based palliative care, leaders advancing the discipline continue to underscore the fundamental patient-centered orientation of this unique practice and to include patient-centered outcomes as key metrics for research as well as clinical care. Encouraging in this respect is multi-site data from Veterans Administration Medical Centers assessing nine qualityrelated aspects of care in the last month of life: patient well-being and dignity, adequacy of communication, respect for treatment preferences, emotional and spiritual support, management of symptoms, access to the inpatient facility of choice, care around the time of death, access to home care services, and access to benefits and services after the patients death (7,8). Adjusted quality scores for palliative care patients were higher overall than for patients not receiving palliative care65 versus 54and higher in almost all individual domains. Palliative care appears to also improve perceptions of the quality of carean important patient-centered metric. The positive cost impact of hospital-based palliative care has also been a major focus. In the largest such study to date, using 20022004 administrative data from eight hospitals with established palliative care programs, 2,630 palliative care patients who were discharged alive were propensity-score matched to 18,427 usual care patients, and 2,278 palliative care patients who died were score matched to 2,124 usual care patients (9). The palliative care patients discharged alive had an adjusted net savings of $1,696 in direct costs per admission and of $279 in direct costs per day, with significant reductions in laboratory and intensive care unit costs compared to costs incurred by usual care patients. Savings were even more pronounced for palliative care patients who died: an adjusted net savings of $4,908 in direct costs per admission and of $374 in direct costs per day, with significant reductions in pharmacy, laboratory, and intensive care unit costs compared with those of usual care patients. Other studies have reported similar cost savings achieved through the use of palliative care services and resources. Data from the Dartmouth Atlas have been used to support the fiscal case for inpatient palliative care services as a way to better manage high-need, high-cost, highutilization patients (10). The positive cost impact of palliative care in the hospital setting is accompanied by improvements in symptom control and patient satisfaction (7,11). The need for better palliative care training for all health care providers demands ongoing attention focused on both physicians-

in-training and practicing providers. Fifteen years after the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments demonstrated inadequate symptom control and advance care planning in five major teaching hospitals in the United States, inadequate symptom management and communication in advanced illness continue to be demonstrated routinely in health care practice (12). Furthermore, the curriculum in medical schools continues to undermine the value of advanced illness care (13). With only one palliative care physician currently for every 31,000 patients with serious illness (14), the need to train providers in palliative care skills and to improve the attitudes of health care providers towards patients with advanced, incurable illnesses is critical. An important trend that will facilitate evidence-based practice in palliative medicine is the increase in palliative care research activity. In 1970, palliative care studies constituted 0.1% of all Ovid Medline citations; by 2005, this proportion reached 0.4%. Published palliative care clinical trials comprised 1% of all palliative care literature in 1970; from 2001 to 2005, this percentage rose to 7%. Palliative care clinical trials as a percentage of all clinical trials rose from 0.2% in 1970 to 0.8% in 2001-2005 (15). The International Association of Hospice and Palliative Care Web site now lists 27 journals specifically dedicated to hospice, palliative, and end-of-life care. There is also a growing number of palliative care-relevant articles being published in general medical, nursing, and social work journals. Electronic digests are available to rapidly disseminate reviewed publications important to practicing clinicians (16). Recent attention in the field has focused on ensuring the quality and clinical relevance of evidence being published. Convening partnering investigators from prominent institutions nationwide, a newly formed palliative care research cooperative group is moving rapidly to define an agenda for the field, develop collaborative processes including standardized methods of data collection and sharing, and systematically build a robust evidence base of high-quality studies to guide clinical decision-making (17). As health care and patient populations become increasingly complex, palliative care provides a structured, rational, patientcentered approach to the provision of high quality, cost-effective care that meets the needs and desires of patients, their families, and caregivers. Palliative cares integration into academic medicine is only beginning to occur. As palliative care is increasingly woven into the fabric of health care, it will be critical that it is mainstreamed into the academic enterprise. The rewards to be gained by academic health centers adoption of palliative care will be multifold, and will help redirect patient care back to its roots in relieving suffering. AUTHORS

Amy P. Abernethy, MD Division of Medical Oncology, Department of Medicine Duke University Medical Center Christine Ritchie, MD Associate Professor, Division of Gerontology, Geriatrics, and Palliative Care University of Alabama at Birmingham

http://bestpractice.bmj.com/bestpractice/monograph/1020.html Introduction
Palliative care is specialised medical care for people with serious illness that focuses on the best quality of life possible. [1] To palliate comes from the Latin word 'pallium', 'to cloak' or to ease symptoms without curing the underlying disease. The primary goal of palliative care is to provide quality of life for the patient and family, achieved through an interdisciplinary approach that includes symptom control and support for the patient and family. This may occur at any stage of a patient's illness, with or without life-prolonging therapies. Hospice is a philosophy of care that focuses on the palliative-care needs of the patient unit (patients and carers), to relieve suffering and promote comfort during the end-of-life transition when curative therapy is no longer desired and/or an option. Determining a patient's goals of care is the key principle underlying palliative medicine. Palliative care should be integrated into the daily clinical practice of patient care, regardless of the underlying illness or stage of disease.

Palliative-care services
Palliative care addresses the physical, psychological, social, and spiritual issues of a patient's disease process. It may be defined as patient- and family-centred care that optimises quality of life by anticipating, preventing, and treating suffering; throughout the continuum of illness, palliative care involves addressing physical, intellectual, emotional, social, and spiritual needs and aims to facilitate patient autonomy, access to information, and choice. This is accomplished through an interdisciplinary team approach, which may include physicians, nurses, nursing aides, social workers, case managers, chaplains, psychologists, dieticians, pharmacists, therapists, and

trained volunteers. [2] The team elicits the patient's goals of care and focuses on improving the quality of life and promoting comfort by therapies that are in line with the patient's goals. This may involve managing pain and non-pain symptoms, enhancing communication and education, assisting with difficult decision making and treatment choices, advance-care planning, disposition planning, providing emotional and spiritual support, and providing grief and bereavement services. These services are usually provided as a complement to the existing medical care. Hospice care falls under the larger umbrella of palliative care. Hospice is a philosophy of care that focuses on the described palliative-care needs of the patient unit, to relieve suffering and promote comfort during the end-of-life transition when curative therapy is no longer desired and/or an option. Addressing a patient's psychosocial and spiritual transition from curative to palliative therapies and goals is part of the process.

Need for palliative care

The 2008 estimated life expectancy at birth in the UK was 79 years: 76 years for males, and 81 years for females, similar to those for the European Union as a whole and for the US. [3] Advancements in public health and technology have modified the leading causes of death to be the end result of chronic illnesses. In England and Wales over 230,000 people develop cancer each year, and cancer accounts for one quarter of all deaths. [4] In the US, the leading causes of death in 2007 were heart disease, cancer, stroke, and chronic lower respiratory diseases. [5] Globally, the leading causes of death in 2001 were heart disease, stroke, lower respiratory tract infections, and chronic obstructive pulmonary disease. [6] The older population is growing at a rate faster than that of the world's total population. [7] The percentage of older people is projected to more than double globally in the next half century. One in every 5 Americans will be older than the age of 65 by the year 2030. [8] The ageing population poses unique socio-economic consequences worldwide. A new challenge, as outlined by the United Nations, will be "to ensure that people everywhere will be enabled to age with security and dignity and continue to participate in their societies as citizens with full rights". [7] The healthcare-delivery system is changing to be responsive to the needs of people with chronic, debilitating illnesses and end-of-life issues. Palliative care will have a key role during this transition. Many gaps exist in end-of-life care. In a multicenter landmark study, only 47% of physicians knew when their patients desired do-not-attempt-resuscitation (DNAR) status, with only 51% of these patients having a written DNAR order. [9] Despite >50% of patients dying in the hospital, 49% to 100% of patients and 63% of carers state that home is the preferred place of death. [9] [10] In addition, symptom control is not optimal, with surrogates reporting 50% of their loved ones having moderate to severe pain >50% of the time during the last 3 days of life. [9]

Palliative care has been shown to improve patient outcomes, and provide lower cost of care and intensive care utilisation. [11] [12] [13] [14] [15] [16] Outpatient palliative care services provided to patients with advanced cancer receiving standard care had improved quality of life and mood compared with patients receiving only standard care, with no differences in survival. [17] In addition, patients with newly diagnosed metastatic non-small cell lung cancer who received palliative care in addition to standard care had better quality of life and mood, and longer survival than patients receiving only standard care. [18] The American Society of Clinical Oncology advocates integrating palliative care principles into the care of patients with advanced cancer, and incorporating quality palliative care into oncology training and certification. [19] In the UK, the Gold Standards Framework (GSF) was developed to support general practitioners and district nurses in delivering quality palliative care. [20] The GSF focuses around the '7 Cs' of communication, co-ordination, control of symptoms, continuity, continued learning, carer support, and care of the dying.

Goals of care
Determining a patient's goals of care is the key principle underlying palliative medicine. A 7-step protocol to elicit goals of care is a helpful tool for this process. [33] [34] Create the environment Secure a place where you can sit down, have privacy, and minimise interruptions. It is essential to be able to listen to the patient throughout the palliative care process. Depending on an individual patient's circumstances and choice, discussion may be with the patient alone or in the company of selected people such as partner, other family member, or carer. All discussion should proceed at a pace tailored towards a patient's own needs. For some patients goals of care can be established in one discussion. Others may require subsequent conversations. Determine what the patient (and family) know Clarify upfront what the patient and family understand about the current situation. This step is critical before proceeding any further. Update the patient and family on the patient's condition and correct any misunderstandings. Explore what the patient's (and family's) hopes are Discuss what brings the greatest value, meaning, and joy to the patient's life. Focus on what you can do to help achieve those goals. Identify things that you cannot do because they are not possible or are

not in line with achieving the goals of care. Offer realistic goals and discuss options to achieve those goals Set goals before determining the treatment plan. Assist in shared decision making by suggesting realistic goals and making recommendations on the care plan that will achieve the patient's goals. Work through unreasonable or unrealistic expectations. Redirect unrealistic hopes to realistic ones. Respond empathically Be prepared to respond to any emotions that may arise. Listening to and acknowledging the emotion is often enough to provide a sense of respect and comfort. Make a plan, summarise, document, communicate, and follow through Establish a plan for the next steps (e.g., where you go from here). Summarise the plan to ensure that everyone is on the same page. Document the plan in the chart. Communicate the plan to others in the medical team. Schedule a follow-up meeting as indicated. Periodically review and revise Review and revise the goals of care when the patient has a significant change in health status, limited life expectancy, change in setting of care, or change in treatment preferences. Goals may change near the end of life.

Overview of treatment of the seriously ill patient

The role of the palliative-care team is to incorporate the information from the detailed assessment and develop a treatment plan that matches the patient's goals of care, including expert symptom-specific control. Symptom management is complex because there are often multiple symptoms. General clinicians should seek advice or help from a specialist in palliative care when management is difficult.

Comprehensive palliative-care assessment

A comprehensive palliative-care assessment enables an individualised care plan to be prepared. [35] A key part of the assessment is to prioritise the patient's and family's concerns and problems. However, it should be recognised that it is not always possible to do a comprehensive assessment on one visit. Furthermore, in some circumstances any immediate issues (e.g. a person in severe pain) may require action before the full assessment can be completed. Assessment may be facilitated by the use of palliative care assessment tools.

[Palliative care Outcome Scale (POS)] (external link) [Alberta Health Services: Edmonton Symptom Assessment System Revised] (external link) Assessment should include the following: History of illness Review the patient's disease course, including the primary illness and pertinent secondary diagnoses. Summarise the previous treatments and patient's response. Physical symptoms Physical assessment is best organised by symptoms and functional activities, rather than by organ system. The physical examination can be used to confirm findings from the history. Occasionally, diagnostic tests are helpful if they change the care plan and are in line with the patient's goals of care. Psychological symptoms Inquire about mood/affect, emotions, fears, cognitive state, coping mechanisms, and unresolved issues. Decision-making capacity Evaluate global and decision-specific capacity. Begin advancecare planning discussions. Social assessment Evaluate the family, community, financial, and environmental circumstances that are affecting the patient. Spiritual assessment Inquire about personal meaning and value of the patient's life and illness, faith, religious denomination, and desired pastor services. Practical needs Determine carer, dependent, domestic, and residential needs, and how these will change as the patient's illness progresses. Death planning Evaluate current and anticipated losses. Determine bereavement needs of patient and family, including risk assessment for

complicated grief. Continue advance-care-planning discussions and planning for the last hours.

Illness trajectories
Patients with advanced illness can be categorised broadly by the clinical course of their disease process. This concept of chronic-illness trajectories can be helpful in estimating prognosis, revisiting goals of care, and anticipating the patient's physical, psychological, social, and spiritual needs. Three distinct illness trajectories have been described for patients with chronic, progressive illness: cancer, organ failure, and dementia trajectories. [36] While simplistic (and with the caveat that not all patients will conform to a specific trajectory), these remain useful models to consider for patients with such illness. Cancer trajectory Patients have a slow, gradual decline for prolonged periods, followed by a short period of rapid decline, which leads to death.

Cancer trajectory

Pain management
Pain is an unpleasant sensory and emotional experience that simply is 'whatever the patient says it is'. [53] [54] Pain is the most common reason patients seek health care. [55] Approximately 25 million Americans experience acute pain each year, with another 50 million experiencing chronic pain. Opioids are the mainstay of therapy for cancer pain. [56] There is evidence that opioids are also effective for non-cancer pain. [57] [58] Opioids are more effective than placebo

for nociceptive and neuropathic pain. [59] [60] Potentially reversible causes of pain should be identified. Nonpharmacological interventions include: [53] [61] [62] [63] [64] [65] [66] [67] [68] Patient and family education Self-help techniques Cognitive-behavioural coping strategies Music therapy Complementary therapies (e.g. massage therapy, reflexology) Physical exercise/therapy Counselling Addressing the psychosocial and spiritual issues. The World Health Organization (WHO) analgesic ladder provides a stepwise approach to the use of analgesic drugs in cancer pain. [69] [60] [68] Approximately 71% to 100% of patients can achieve pain control by following the WHO ladder guidelines. [60] The ladder starts with the use of non-opioid analgesics for mild pain, then weak opioids for moderate pain, and strong opioids for severe pain.

Three Generations of Models of Palliative Care

The earliest model of palliative care focused on patients first receiving aggressive, curative treatment, then transitioning to palliative care, and eventually transitioning to hospice. These three levels of care were not well integrated, and this early model of palliative care reflected the need to choose between receiving curative treatment and transitioning to supportive care alone (Figure 1).

(Enlarge Image)

Figure 1.

First-generation model of palliative care and hospice model. Adapted from End-of-Life Nursing Education Consortium SuperCore Curriculum (Copyright 2008, COH and AACN).

More recently, many palliative care programs have been established in acute care settings to provide consultative services.[10] While they greatly improve pain and symptom management and are very helpful in improving discussions of goals of care, they are usually accessed only to help limit lifesustaining treatment or to allow death.[11,12] Palliative care programs that provide care from the onset of the disease usually develop their programs based on a secondgeneration model of palliative care. In this model, curative, aggressive treatment and palliative care coexist. As cure-oriented treatment options decrease, the role of palliative care increases. Hospice services are offered at the end of the continuum of care

(Figure 2).

(Enlarge Image)

Figure 2.

Second-generation model of palliative care. Hospice is included in the palliative care focus. Adapted from The World Health Organization. [3]

More recently, the model of palliative care has continued to evolve into a third-generation model (Figure 3). Like the secondgeneration model, there is a "zero sum" assumption that a strong focus in one aim necessarily implies a minimal focus in the other. Thus, early in treatment, almost all efforts are oriented toward modifying disease processes. Palliative or supportive care increases only as the disease-orientation decreases.

Third-generation model of palliative and hospice care (End-of-Life Nursing Education Consortium SuperCore Curriculum; National Quality Forum). Adapted from the National Quality Forum. A National Framework and Preferred Practices for Pallative and Hospice Care Quality: A Consensus Report. Washington, DC: Authors; 2008:3.

The Infinity Hospice Care Blog

(http://www.infinityhospicecare.com/blog/?p=34)

Shhhh . . . What About Hospice & Palliative Care?

I try to focus this blog on health rather than disease by writing about all that we can do to optimize our wellness. But death is the 800 pound gorilla in the room. We cant escape its grasp, yet too often, we ignore it and wont discuss it, even when its near. Its as if by mentioning it by name, were committing someone to a sure death. But I have a surprise for you: even if we dont talk about death, we will still die, sooner or later. Sure, physicians and lay people alike arent very good at using their crystal balls to predict the exact time of death. But with certain diseases and conditions, weve developed enough experience to narrow our guess down to weeks-to-months or sometimes days-to-weeks or so on. You get the idea. Cancer is one of those illnesses where we can often make a credible guess. Yes, weve made tremendous strides over the last few decades against this dreaded diagnosis. In fact, some forms that were once as good as a signed death sentence are now manageable. With others, we even dare breathe that other C word,

cure. But still too often, cancers either present too late, having already spread to different parts of the body, or become resistant to all the surgeries, chemotherapies, and radiation that we can throw at it. These patients, the ones with metastases, are the ones for whom we should discuss hospice and palliative care earlier rather than later. Realistically, we should offer palliative care even at the beginning of any treatment to help all patients and their loved ones cope with side effects and adverse reactions. But later on, once its clear to us, the physician, that things arent going so well, rather than consider death the equivalent of defeat, we really need to take the initiative and start discussing hospice & palliative care, even as we consider another Hail Mary pass to rally the troops. In truth, we never win. Death always trumps life. The American Society of Clinical Oncology just released a new statement that care needs to be individualized for patients with advanced cancer. Thats code for actively involving the patient in his/her care, specifically asking for their individual goals and care preferences. For many, its not death that is feared, but rather the final days right before. Patients dont want to suffer (however, one defines that physically, mentally, emotionally or spiritually) or to be left alone in the hospitals cold sterile environment. Most want to be at home surrounded by loved ones after having checked a few more items off the bucket list. This is where hospice and palliative care medicine step in, to offer comfort and compassion, when no cure is possible/realistic, to both the patient and the family. Incredible as it may sound, in the case of metastatic nonsmall cell lung cancer, in a study published in the New England Journal of Medicine last August, those patients randomized to early palliative care had less aggressive care at the end of life (as expected by definition), yet reported better mood, better quality of life, and surprisingly, longer survival, living on average almost 3

months longer (11.6 months compared to 8.9 months) compared to those who received standard oncologic therapy alone. So its about time that we acknowledge that 800 pound gorilla. To get the conversation started, a nice piece was written online yesterday in the USA Today. Lets start talking about hospice and palliative care options. Disclaimer: I serve as a Medical Director for Infinity Hospice Cares Las Vegas program Resource: Dr. Alvin Lin alvinblin.blogspot.com