Palliative Care: An Update

Abstract

Population across the globe is not only aging but also suffering from serious illness. This is critically important in providing patient–centered end of life (EOL) care. The following article intends to describe what are the principles of palliative care (PC), how PC assists in the care of patients with cancer and serious illness across settings, current delivery of EOL care, and the future of PC with novel models of delivery.

Introduction

Why is Palliative Care Important?

About 2.6 million North Americans died in 2013¹, but the demographics of those who have died has changed dramatically since the early 1900s. Death in childhood was more common at that time, but with the introduction of antibiotics, immunizations and sanitation practices, morbidity and mortality began to drop and a longer life expectancy was realized. Increased life expectancy has brought with it much higher rates of chronic disease. Chronic conditions don’t threaten life expectancy, but significantly affect a person’s wellbeing and health care needs. More serious life limiting chronic conditions such as dementia, cardiovascular and respiratory disease, and cancers are also increasing and have changed the pattern of death². Today older adults typically die from chronic illnesses with a gradual period of deterioration and disability³. Most healthy people, when asked where they would prefer to die, nominate their home as their preference. However, the statistics on place of death indicate that this is uncommon. For example, in Australia and United Kingdom (UK) only 18% of people die at home, 13% die in the nursing home, 13% die in hospice, 56% die in hospitals^{2, 4}. This results in a high cost burden for the health system and potentially a poorer quality of death².

Palliative care (PC) is a new field in medicine that has proven to be essential for patients with chronic advanced illness. According to the Worldwide Palliative Care Alliance (WPCA) and the World Health Organization (WHO) global atlas⁵, only three out of five continents have quality palliative care. The document states that PC should be based not on prognosis or diagnosis but on needs wherever the persons’ care take place and at the primary and secondary levels of care. Palliative care is a human right because the lack of PC is a problem that leads to unnecessary suffering for the people who are among the most vulnerable in society.

Worldwide 20 million people are estimated to require PC at the end of life (EOL) every year, of which 69% are adults over 60 years old and 6% are children. Figure 1 shows an estimated number of people in need for PC. The places colored in orange and red have the highest number of patients in need of this service⁵.

Figure 1.

Rate for people in need of palliative care.

From Connor SR, Sepulveda-Bermedo MC (Eds). Global Atlas of Palliative Care at the End of Life. World Health Organization (2014). Worldwide Palliative Care Alliance:Hospice House, London (Chapter 2: pp.17).

Nationwide the Institute of Medicine (IOM) has released multiple reports stating that PC is essential for quality, and stopping suffering across the continuum is their common denominator. For example, the Dying in America document reports that there is evidence for improving the quality and availability of medical and social services for patients with advance illness and their families⁶. Moreover, cancer care delivery system is in crisis because care often is not patient-centered and many patients do not receive PC to manage their symptoms and side effects from treatment⁷.

What are the Main Barriers for Palliative Care Development?

There are many barriers to PC development⁵ This includes but is not limited to lack of clear policy establishing PC, lack of educational programs to teach PC and lack of essential medications to deliver PC (e.g. opioids, which has low to non-existent access in 83% of the world’s countries). All these barriers can be overcome. A public health approach that emphasizes policy, education, medication availability, and implementation is needed to foster the development of PC services⁵.

A report by Casarett and Teno⁸ states that population health and PC need each other because of the potential synergies between these two disciplines. For instance, PC focuses on patient-centered outcomes such as quality of life, symptom burden, emotional and spiritual well-being, caregiver burden and bereavement. This more inclusive approach complements the traditional emphasis of population health on reducing morbidity and avoiding mortality. On the other hand, population health models could help PC move beyond the current model of inpatient and outpatient consultations. Specialized PC clinicians are in short supply, and a population health-based approach may offer novel strategies to meet patients’ and families’ needs without relying on specialists. Similar to the suggestions proposed in the global atlas report⁵, authors propose that population-based PC should include access, primary PC, structures that support PC, innovative ways to change the culture of EOL care and data that provides a picture of a population’s well-being in the face of serious illness⁸. This approach is particularly relevant for low income countries where access to secondary care in hospitals may be limited.

In the next section we will discuss the principles of EOL care and the evolution of PC services in the United States as a way to look at how such barriers are being addressed.

Principals of End-Of-Life Care

End of life (EOL) care is defined as care that helps those with advanced, progressive, incurable, and serious illness to live as well as possible until they die⁹. EOL care in the U.S. is provided through palliative and hospice medicine. Both hospice care and palliative care focus on ensuring the best possible quality of life for individuals with serious illness and their families by providing support, symptom management and comfort care. Palliative care begins at the start of a serious illness and is given alongside treatments designed to combat the disease. Hospice care is a type of palliative care program for people in the final months of life and is considered when the person’s condition deteriorates and active treatment does not control disease. Since progressive deterioration and death is anticipated, the emphasis of care moves from active treatment of disease to treatment to give comfort and control symptoms¹⁰. People who receive palliative and hospice care may live longer and have a better quality of life than people with similar illness who don’t receive it¹¹. Figure 2 shows the model of EOL care continuum¹².

FIGURE 2.

Continuum of EOL care.

Adapted from Ferris F, Balfour H, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. A model to guide patient and family care. Based on nationally accepted principles and norms of practice. J Pain Symptom Manage. 2002;24(2):106–23.

Hospice and palliative care were introduced to the United States over 40 years ago. The movement began to replicate the services provided at the EOL in the United Kingdom. In 1963, Dr. Cicely Saunders, a world renowned hospice leader, was invited to the Yale School of Nursing to provide a lecture series on hospice care. These lectures led to the formation of the first hospice in the U.S. ten years later. Early hospices were developed by professionals who felt that caring was lacking in the provision of health care for the dying and used the services of volunteers, both professionals and lay persons. In 1982, the Medicare Hospice Benefit (MHB) was established as a three-year provision with a required review prior to approval. Conditions were established so that hospice providers had to adhere to standards and regulations in order to receive reimbursement. The MHB provides 87% coverage of hospice patient days; the remaining 13% is covered by a variety of other payers including Medicaid, private insurers, self-pay, and charity care¹³. A key element to the provision was that participants had to have a terminal illness with a life expectancy of 6 months or less certified by two clinicians^{13, 10}.

Over time in the U.S. the specialization of palliative care has advanced considerably. It is an established field with formal accreditation processes (for hospitals by Joint Commission, for universities by ACGME and for comprehensive cancer centers by NCCN), has an increasing public and professional awareness, increasing training options, and better supportive policy. Palliative care is provided most of all in health care settings including acute hospitals, community services (either as consult or hospice service), nursing home and pediatric services.

According to data from CAPC (Center for Advance Palliative Care) registry, in 2015, PC prevalence and number of patients served had more than tripled since 2000. This is more evident in hospitals where in the past five years, the number of academic, community and faith-based hospitals offering palliative care services has soared. As of 2012, some 1,734, or 61 percent, of U.S. hospitals with more than 50 beds had a palliative care team—an increase of 164 percent since 2000¹⁴. On the other hand, the community setting needs further development, but home-based PC pilot models are promising in reducing Medicare cost and hospitalizations^{15, 16}. Further development is needed in the nursing home setting as well as in the pediatric population.

Current changes in the health care system have led to policy supportive of PC services. For instance, moving reimbursement from fee for service toward paying for quality through the Affordable Care Act (ACA), increased financial and quality incentives to keep people safely at home and avoid unnecessary hospitalizations, and the new reimbursement for advance care planning conversations in January 2016. These changes have led to marked increase in payer and health system interest in palliative care models. However, the challenge is to determine what type of patient really needs palliative care.

Who Needs Palliative Care?

The need for palliative care may not be as obvious and it depends on the psychosocial, spiritual and physical necessities of each patient rather than on diagnosis. However, there are several diagnoses that due to its known course have been identified as in need for PC (See Figure 3). Caution is needed when using only diagnoses for the assessment, because not all patients with a certain diagnosis are in need of palliative care. There are generally three groups of patients: those who have a palliative period of advancing progressive disease; those who have a stable or no disease, relatively few symptoms but then deteriorate or die suddenly; and those who suffer from chronic disease, where the disease is not clearly progressing, but who might have periods of progression and symptoms where they would benefit from palliative care and then periods of remission. Because it is not precisely known what the proportions are of those three groups of patients requiring palliative care, symptoms experienced in the last year of life can be used as indicator of palliative care needs⁵. The best tool providers have is their clinical judgment by answering the following question: would you be surprise if this patient dies within the next year? Providers should base their answers on three elements: nutritional decline, disease progression and functional decline¹⁷.

Figure 3.

Distribution of adults in need of palliative care at the end of life by disease groups.

From Connor SR, Sepulveda-Bermedo MC (Eds). Global Atlas of Palliative Care at the End of Life. World Health Organization (2014). Worldwide Palliative Care Alliance:Hospice House, London (Chapter 2: pp.17).

The prognostic indicator par excellence is function. The trajectory of various disease types is depicted in Figure 4 and it shows how function plays out in the dying process. Unlike cancer patients who experience considerable decline in a shorter period of time prior to death and where the need for palliative care services may be more obvious, patients with chronic conditions have a much longer disease trajectory with difficult prognostication. Additionally, a larger number of patients exist with more complex chronic conditions involving multiple co-morbidities². On the other hand acute illness among healthy individuals can lead death and adult disability. Therefore, a study by Creutzfeldt CJ, et al.¹⁸ proposed a fourth trajectory to help prepare providers, patients and families to make more informed and critical decisions about care. The suddenness of the injury and the “time is brain” imperative create a fast paced, often chaotic environment characterized by uncertainty, fear and stress for patient, families and providers. Decisions must be made rapidly, unlike the case for patients with cancer and other chronic diseases, when goals can be clarified in the context of relentlessly progressive symptoms and disability. Patients who survive the acute stage enter a chronic stage of recovery, when the chaos gives way to an agonizing watchful waiting period. The potentially long disease course and changing function demand vigilance for emerging symptoms. Understanding this pattern and providing clear communication may help improve clinical care by considering the steps set out in the trajectory. The added dimensions to this trajectory, namely, building trust and shared decision making, are pivotal in all PC conversations¹⁸.

Figure 4.

The disease trajectories of chronic illness and acute brain injury.

Adapted from the Supporting Australians to Live Well at the End of Life. Australian Health Ministers. National Palliative Care Strategy 2010: Commonwealth of Australia; and from Creutzfeldt CJ, et al. Predicting decline and survival in severe acute brain injury: the fourth trajectory. BMJ 2015

As stated in section I, there is a need for population based planning of PC service provision. A population health approach is about focusing the planning on population rather than individuals and addressing disparities between different groups through a priorities method. These groups can be categorized according to socio-demographic or diseases such as dementia and cancer. Based on diagnosis of cancer and non-cancer serious illness we will look into the evidence of needs met by PC services. Seriously ill patients have high symptom burden depending on their diagnosis, namely nausea, pain, fatigue, anorexia and breathlessness among others. Routine comprehensive symptom assessment with the use of validated instruments is indicated in the context of advanced disease.¹⁹ Also data suggest that spiritual concerns are common and that the majority want to discuss their spirituality with providers. All of which can be address by PC approach. In cancer care there is a tendency toward personalized cancer treatment because it is associated with lower treatment related death rate (1.5 vs. 2.3%, p=.001)²⁰. Various different randomized controlled trials (RCT) in advanced cancer patients demonstrated benefit of early PC in survival, quality of life and mood outcomes but no change in symptom intensity^{11, 20, 21}. Certainly, providing PC based on patient needs is the goal but, depending on the setting, PC delivery may be different.

Current and Future Models of Delivery

Current Models

A model of service delivery is about the framework for the delivery of care and a model of care broadly defines the way health services are delivered. Delivery of PC service is influenced by the nature of the health system and the country in which the PC service are embedded. Palliative care is provided by many different health professionals and it occurs across three health settings: community, hospice and acute hospitals²².

Community settings include the patient’s own home, nursing home facilities or other locations. Community PC can reduce general healthcare use and increase family and patient satisfaction with care, which supports families to sustain patient care at home²². Nursing home PC delivery occurs in one of three modes: contracted hospices, PC consultation and internal PC team. However, nursing home PC delivery has limited evidence about an effective integrated model. This is an area of great need given that 28% of older Americans die in nursing homes, as well as nearly 70% of people with advanced dementia. Moreover, end-of-life (EOL) care for nursing home residents has been associated with poor symptom control, burdensome transitions, and low family satisfaction with care ²³. Hospice use in the nursing home is associated with lower rates of invasive therapies, hospitalizations, higher satisfaction and pain management¹⁹. A more recent retrospective study by Miller and colleagues revealed that PC consults in nursing homes was associated with less hospitalization and intensive treatment²⁴. Future trials should compare the relative efficacy of different models and intensities of PC community services. Models need to include integration between the different setting and services, in particular for PC delivery at the NH.

Hospice or inpatient designated palliative care beds can include beds in hospitals or a purpose-built hospice. In the U.S. & the U.K. hospice is provided at home through an interdisciplinary team. Hospice has been demonstrated to enhance symptoms, improve satisfaction, prolong survival and reduce admissions¹⁹. However, hospice care needs to be viewed as less of an escape from traditional medicine and traditional care at the EOL and more as a component of high quality care²⁵. For this reason, with the ACA there is incentive in developing PC programs by managed Medicare and Medicaid.

Acute hospital is the place where patients receive active but short term treatment for a severe injury or episode of illness, an urgent medical condition or during recovery from surgery. PC is usually provided by a consultative service. Inpatient consultation team reduces symptom distress, enhances quality and decreases spiritual distress¹⁹. Along with various prospective studies, one RCT demonstrated better quality of life and longer survival in the PC consultation group as compared to usual emergency department (ED) care. There is evidence that using either consultative or integrative PC interventions in the ICU results in the decrease of ICU and hospital length of stay²⁶. ICU interventions also improved the quality, quantity and content of communication and decreased symptoms of distress and anxiety in family members. However, the field could benefit from a definitive well-powered, well-designed, multicenter controlled trial evaluating proactive PC in the ICU/ED as compared to usual ICU/ED care.

Palliative care teams in hospitals are now the rule, not the exception, because evidence shows its benefits in quality of service and less expenditure. The sickest 10% of the U.S. population accounts for 64% of health care expenditures. On average, palliative care consultation is associated with reductions of $1,700 per admission for live discharges and reductions of $4,900 per admission for patients who died in the hospital. This means savings of more than $1.3 million for a 300-bed community hospital and more than $2.5 million for the average academic medical center²⁷. This is evidence of cost reduction seen in the inpatient setting however this is inconclusive in the community setting²⁸. There is also need of further studies to evaluate the cost of different population and disease groups (such as cancer or renal care) served in these settings.

One aspect that has been introduced by PC is dignity²⁹. While the separation of humanity and compassion from healthcare delivery has been an issue, healthcare providers have a profound influence on how patients experience illness and on their sense of dignity. That is why a dignity conserving care framework has been proposed to remind providers about the importance of caring for as well as caring about their patients. This consists of the “ABCD” mnemonic, including attitudes- to examine their own attitudes and assumptions toward patients, behaviors-awareness of attitudes can set stage for modified behavior, compassion-awakening of the providers’ feelings (empathy) about patients’ suffering, and dialogue-exchange of information within a partnership. The addition of dignity conserving care in health education provides a framework to guide providers towards maintaining patients’ dignity³⁰.

Future Models

There are two models worth exploring as they may be exemplary for future PC models. Of note, case management is a recurring feature of many successful models. First, is integrated PC in cancer and chronic disease. A systematic review³¹ on integrated PC in Europe revealed that agreement in the benefit of involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place. This model has a threefold focus: treatment for alleviation of symptoms, consulting for discussion of options and training for education of providers involved in the interventions. A cultural shift that is needed is that of reframing the conversation about wellness and living with quality for as long as possible no matter your health condition²⁵. Second, is the example of Florida Hope Hospice⁵. This hospice agency realized there was an increasing need for a special kind of care by those who were not eligible for hospice benefit. They were one of many hospices that pioneered the concept of access for all and set a goal to expand the scope of our care to reach more people in need. Through an interdisciplinary team approach they provide pain control, symptom management and bereavement counseling. This lead to care coordinated programs, each with its own staff, that focus on quality of life through palliative care. This enabled adults to remain in the place they call home, providing daily living assistance, proactive medical care and innovative disease management. This resulted in additional cost-saving efficiencies, increased levels of service, and a more robust referral network. Through collaboration with other healthcare centers and the open access, Hope cares for 73% of all people at the end of life in their service area; the national average is 41.6%. Revenue sources included Medicare, Medicaid, insurance, private pay, grants and community support. Only limited expansion was required for their administrative services and infrastructure⁵.

Conclusion

Palliative care is a growing specialization that has proven to meet the needs of patient with serious illness with dignity. The story of U.S. PC development has demonstrated how such service can be expanded not only through policy but also through education of providers, including nurses, social workers, and physicians, among others. Functional decline and patient needs are the best determinants of who would benefit from PC. This service is available in the hospital and community settings with good evidence of its benefits. However, further studies are needed to provide appropriate modes of delivery as well as to fortify the evidence of its benefits across all settings.

Biography

Dulce M. Cruz-Oliver, MD, is Associate Professor, Department of Internal Medicine, Division of Geriatric Medicine, Saint Louis University School of Medicine, St. Louis, Missouri.

Contact: dcruzoli@slu.edu