The Growing Need for Supportive Care in Oncology

EARLY CANCER DETECTION and better treatment options have resulted in more people surviving cancer and living longer with their post-treatment symptoms. Now, as baby boomers enter their senior years, there continues to be an explosion in the number of aging adults diagnosed with and surviving cancer. And, however positive this phenomenon might seem, it has contributed significantly to the growing need for supportive care in oncology.

According to the Centers for Disease Control and Prevention, “In 2015, the latest year for which incidence data are available, 1,633,390 new cases of cancer were reported, and 595,919 people died of cancer in the United States.”¹ The upside to this statistic is, of the 1,633,390 new cancer cases, 1,037,471 people survived. This means for every year that passes, there are more than one million more people living with cancer and their posttreatment symptoms who require some level of supportive oncology care. Unfortunately, the current healthcare system is ill prepared for this onslaught of new oncology patients. Even though major strides have been made in the palliative care field — there were only 658 hospitals (50 or more beds) with a palliative care team in 2000 compared with 1,831 hospitals with a palliative care team in 2016 (a 178 percent increase) — there still exist myriad barriers to supportive care in oncology.²

Diane Meier, MD, FACP, FAAHPM, director at the Center to Advance Palliative Care (CAPC), says the main barriers to palliative care include a lack of physician understanding of what palliative care is and when to refer; a lack of public understanding of what palliative care is; an inadequate skilled workforce pipeline in which there are more patients than trained health professionals to care for them; inadequate financing; and outdated policies that fail to address the changing needs of an aging and chronically ill patient population.

Palliative vs. Hospice Care

The World Health Organization’s outdated definition of “palliative care”³ still defines it as a pathway to dying, which perpetuates the misperception of many oncologists and their patients that palliative care is the same as hospice care. This misperception can result in oncologists failing to refer patients to palliative care at the right time or not referring them at all. It can also result in patients failing to request palliative care if and when they decide they want and need it.

Today’s definition of palliative care is distinctly different from hospice care. Palliative care is intended to be provided at any point during an illness with the goals of providing comfort, quality of life and support to patients and their families. Palliative care can begin at any time and at any stage of illness, whether the illness is curable, chronic or life-threatening, at the discretion of physicians and patients.⁴

On the other hand, hospice care provides comfort when there are no longer curative options available or when patients have chosen not to pursue curative or aggressive treatment because side effects outweigh benefits. Eligibility for hospice care requires two physicians to certify a patient has less than six months to live, if the illness were to follow its natural progression.⁴

The Palliative Care Framework

The palliative care framework includes many services provided by an interdisciplinary team that consists of physicians, nurses, social workers, therapists, home health aides, volunteers, spiritual counselors and bereavement counselors who work together to provide symptom relief and pain management, and to alleviate psychosocial distress to cancer patients during and after treatment. These services are provided in diverse care settings such as hospitals, nursing homes, assisted living facilities, long-term care facilities or patients’ residences.

The main purpose of palliative care is to improve communication between patients, caregivers and healthcare providers. Cancer patients who receive supportive oncology care can expect to remain comfortable by preventing or relieving their pain and suffering; improving their quality of care while reducing medical costs; and receiving psychological and spiritual care.⁴

The benefits of palliative care also include fewer tests and treatments that can be invasive and costly and cause additional anxiety and stress for patients, shorter or fewer hospital stays, fewer emergency room visits, fewer intensive care unit admissions on hospital readmission, and more procedures that can be performed at home (such as intravenous and drug treatments).

Guidelines for Quality Palliative Care

The National Consensus Project for Quality Palliative Care, comprising 16 national organizations with extensive expertise in palliative care and hospice, recently updated its National Consensus Project Clinical Practice Guidelines for Quality Palliative Care in 2018. These guidelines, endorsed by more than 80 national organizations, establish a comprehensive foundation for gold-standard palliative care for people living with a serious illness, regardless of diagnosis, prognosis, age or setting.

This fourth edition expands upon the original guidelines first developed in 2004 that described core concepts, structures and processes necessary for quality palliative care, including eight domains of practice. It also expands upon clinical and organizational strategies, screening and assessment elements, practice examples, tools and resources.⁵

Models of Palliative Care

CAPC’s three levels of palliative care. CAPC, a national member-based nonprofit organization dedicated to increasing the availability of quality palliative care services for people living with a serious illness, developed a provider-based model for primary, secondary and tertiary palliative care. The model focuses on palliative care services according to level of patient complexity and setting. Primary palliative care is provided by primary care providers, oncologists and others, and includes services all clinicians should be able to deliver, including symptom management and communication skills. Secondary palliative care is provided to patients when their symptoms are especially complex or difficult to manage. And, tertiary palliative care is indicated for patients with the most complex supportive care needs, which includes the roles of conducting research and educating the next generation of physicians and other professionals.⁶

The Bow Tie Model of 21st Century Palliative Care. Philippa Hawley, BMed, FRCPC, division head in the Department of Palliative Care at the British Columbia Cancer Agency in Vancouver, B.C., Canada, proposes the Bow Tie Model to describe palliative care. This new model acknowledges the duality of an approach that prepares patients for the worst (death) but still allows hope for the best (cure). It consists of two overlapping triangles that resemble a bow tie, with an arrow pointing from left to right. The first triangle represents disease management, and the second triangle is palliative care. The base of the palliative care triangle (end of the model) includes both death and survival as possible outcomes. The arrow indicates this is a dynamic process with a gradual switch in focus. The key difference between this and traditional models is survivorship is included as a possible outcome. This model permits the early acceptance of a care pathway where the two approaches to care are integrated from the time of diagnosis, when the ultimate outcome (death or survivorship) may be too frightening for the patient to contemplate.⁷

Born out of the Bow Tie model is the term “survivorship.” According to Dr. Hawley, survivorship “is starting to be used in reference to a type of service overlapping with or including palliative care.”⁷ She says a palliative approach to care is particularly important when the prognosis of a patient is uncertain and survivorship is a possibility. “Survivorship refers to a distinct phase in the illness trajectory between cessation of attempts to cure the disease and transition back to normal life or as near to a person’s normal as possible,” says Dr. Hawley. “Learning to live with stable illness may be one state of survivorship, and cure is not necessarily required. People who have been cured of a serious illness may be irreversibly damaged by the disease or its treatment, and may require significant multidisciplinary care to achieve their full subsequent potential.” Dr. Hawley believes the suffering of patients who enter the “limbo” of survivorship should be acknowledged, and palliative care specialists should have the skills to contribute to the care of these patients.⁸

The PACSSI model. Joseph Rotella, MD, MBA, HMDC, FAAHPM, chief medical officer for the American Academy of Hospice and Palliative Medicine (AAHPM), who works to improve the care of patients who have serious illnesses, says current fee-for-service payment mechanisms also pose a key barrier to expanding access to palliative care. In an effort to remove this barrier, AAHPM, an organization created in 1988 for healthcare providers who specialize in hospice and palliative medicine, proposed an alternative payment model that would support community-based palliative care called Patient and Caregiver Support for Serious Illness (PACSSI). PACSSI is one of two initiatives under AAHPM’s Payment Reforms to Improve Care for Patients with Serious Illness. “We believe the PACSSI model holds great promise for both improving quality of care for Medicare beneficiaries with serious illness and reducing costs for the Medicare program,” says Dr. Rotella.⁹

Mitigating a Skilled Workforce Shortage

AAHPM believes palliative care providers and organizations are integral to meeting the “triple aim” of better care for individuals, improved health of populations and lower growth in healthcare expenditures. The organization refers to recent studies that have demonstrated high-quality palliative care not only improves quality of life and patient and family satisfaction, but can also prolong survival.¹⁰

According to Dr. Rotella, “There are increasing numbers and needs of Americans living with serious or complex chronic illnesses, and the realities of the care pose challenges for their families. Because the number of people living with serious and complex chronic illness is expected to skyrocket over the coming decades, our nation needs to expand its capacity to train both palliative care specialists and all other clinicians who care for them.”

For instance, AAHPM’s policy statement says by 2050, the population age 65 years and older is projected by the U.S. Census Bureau to be 83.7 million, almost double that of 2012. As the population ages, an increasing number of people will be living with serious, complex and chronic illness. And, according to the Medicare Payment Advisory Commission, in 2010, more than two-thirds of Medicare beneficiaries had multiple chronic conditions, while 14 percent had six or more. Treatment of chronic and serious illnesses such as heart disease and cancer now accounts for nearly 93 percent of Medicare spending.¹⁰

Unfortunately, says AAHPM, there is a large gap between the number of healthcare professionals with palliative care training and the number required to meet the needs of the growing population of individuals with serious illness or multiple chronic conditions.¹¹ In 2010, AAHPM estimated 6,000-plus full-time equivalents, or 8,000 to 10,000 physicians, were required to meet then-current staffing needs in palliative care and hospice programs, with up to 18,000 physicians needed if all hospices and palliative care programs used exemplary staffing models. These scenarios did not take into account future expansion of need due to population growth and aging or expansion of palliative care services into community settings such as nursing homes, homecare and office practices, all of which can be expected to exacerbate the hospice and palliative medicine workforce shortage.¹⁰

To mitigate this skilled workforce shortage, AAHPM developed a bill titled the Palliative Care and Hospice Education and Training Act (PCHETA), which was reintroduced into the U.S. House of Representatives on Jan. 17. This bill includes the establishment of palliative care and hospice education centers, physician training, academic career awards, workforce development, career incentive awards, nurse training, palliative care education and awareness, and enhanced research. AAHPM and its stakeholder partners are focused on securing support from Energy and Commerce Committee members to quickly advance PCHETA.¹²

A Needed Paradigm Shift

Although strides are being made in the palliative care field, supportive care in oncology still requires a paradigm shift if it is ever expected to be considered an essential element of quality medical care for people who have serious, complex or multiple illnesses, regardless of their age, stage of illness, number of illnesses or care setting in which they reside.

“Increasing access to high-quality palliative care is a social transformation of profound importance to our health system, our nation and to people living with a serious illness and their families,” says Dr. Meier. “The goal now is to standardize timely access to quality palliative care for all who can benefit.”¹³