Medical care in its original, premodern practice was largely palliative. The advent of cures such as antibiotics and chemotherapy did not exist, and treatments were often directed at symptoms or what was visibly ailing the patient. Care was often provided in the home and the physician-patient relationship was interwoven into the spirituality and culture of a community. Together with the physician, family members provided care for their loved one as they approached death and passed away, most often in the home.
With advances in medicine and technology came a breakdown in this original model of care. Curative care was slowly separated from comfort care until, in practice, they became mutually exclusive. Over time, this false dichotomy has led to a profound misconception of what palliative care is, creating a gap between care delivered to patients and care desired by patients. This approach has led to unwanted hospitalizations at the end of life, even for those with a strongly articulated preference to die at home.
Palliative care is not independent from curative treatment, and we need to re-center the practice of medicine to be wholly inclusive of palliative care. In this paper, we describe the history and evolution of palliative care and describe a novel partnership between the University of Southern California (USC) Section of Palliative Medicine and the CareMore Health System to improve the skill and comfort level of generalist physicians in delivering palliative care.
History and Evolution of Palliative Care
In the 1950s, Dr. Cicely Saunders, a nurse and social worker who later obtained her medical degree to pursue her passion for end-of-life care, began to advocate for the dying patient by acknowledging their total pain (the suffering that encompasses all of a person’s physical, psychological, social, spiritual, and practical struggles) and the dedicated interdisciplinary approach needed to alleviate it. Dr. Elisabeth Kübler-Ross followed in the 1960s with the controversial and revolutionary book On Death and Dying, which reexamined the way in which we care for dying patients. It was not until 1974 that the term palliative care was coined by Dr. Balfour Mount, a Canadian surgeon who was looking for a term to describe this type of terminal care that would be free of the negative connotations associated with hospice.
Almost a quarter-century later, in 1997, the Institute of Medicine embarked on a formal review of death and dying in the United States and recommended that all patients approaching the end of life have access to palliative care delivered by specialist clinical teams. Over time, compelling evidence emerged showing that early palliative care interventions improved quality of care, reduced cost, and even improved mortality.
The field has since enjoyed great momentum and has grown tremendously over the past several decades. The increase in hospital-based palliative care services by 138% from 2000 to 2011 is an inarguable example of this growth; palliative care is also now a board-certified specialty. However, as patients live longer with more chronic illness, the demand for palliative care specialists has far surpassed the supply. An additional struggle with the multi-morbid aging population is that more patients are transitioning between hospitals, nursing homes, clinics, and homes.
The relative investment in hospital-based palliative care without parallel development of community-based programs has created gaps in care, specifically during care transitions, often when a patient’s frailty is at its peak. Some existing programs have had success in sustainability and reduction of financial losses. More community-based palliative care programs are needed to bridge these care transitions.
The question remains: Who will staff these programs? Despite tremendous growth, palliative care is critically short-staffed in fellowship-trained providers. This workforce shortage is not the only problem, however. Palliative care remains poorly understood. Far too often, patients are described as “not appropriate or not ready for palliative care.” The commonality of this sort of verbiage suggests that there still exists a fundamental provider misunderstanding of what palliative care is and should be.
The core of palliative care is support, and every patient with a serious illness needs support in some way. Additionally, all clinicians should be capable of providing support to their patients, as it is the basis of what every clinician does. Developing and capitalizing on this skill is a logical place to start in the mission to fill the void of palliative care services that exist in today’s health care system.
Developing Responsibility for Non-Specialists: A Train-the-Trainer Model
The concept of primary and other non-palliative specialist clinicians providing uncomplicated, or primary palliative care, is one solution for a sustainable model of palliative care delivery. However, primary care clinicians and other non-palliative care specialists admit to limited exposure to palliative care during training. These clinicians are, therefore, often not comfortable providing even basic palliative care, such as advance care planning and matching care desired to care delivered. Furthermore, incentives to undertake this time-intensive and anxiety-provoking work are limited, especially in fee-for-service environments. With this lack of knowledge, confidence, and incentive comes the risk for low-quality palliative care, which may be more harmful than no palliative care at all.
Health care is trending toward rewarding value-based care. Value is measured by quality over cost, so high-value care means increasing quality while holding costs steady. Because all clinicians should be expected to provide primary palliative care, it is intuitive that elevating that primary palliative skill set will inherently increase value. Not all physicians can dedicate the time necessary to achieve mastery and board certification of palliative care, but the general skill set is badly needed in a broader set of physicians. To address this problem, the University of Southern California Section of Palliative Medicine has partnered with CareMore Health System, a senior-focused health insurance and delivery company, on a train-the-trainer model.
A CareMore physician trainer engaged in an 8-week intensive experiential course at USC in which she learned and practiced fundamental palliative care skills at the bedside under the supervision of a board-certified palliative care physician. Through the dedicated training, she was able to develop more complex symptom management and communication skills, as well. The training was composed of a combination of one-on-one didactics with the palliative care mentor; supervised and then later independent palliative care consultations, including complex family meetings on the inpatient medical, surgical, and intensive care units of USC-LAC Hospital; participation in daily interdisciplinary palliative care rounds; palliative care conferences; and journal club meetings.
The physician trainer then returned to CareMore to use this knowledge in her practice as well as to train community-based physicians and nurse practitioners at CareMore. After the period of site-based training, the trainer had continued communication with the palliative care mentor, with advice ranging from specific case-based questions to assistance with designing training tactics for clinicians in the community-based health care system. Training for the CareMore team was tailored to different levels depending on the knowledge base of the providers and the degree of complexity of the patients they manage. Advanced skills were taught to a team that interfaces with more complex patients who have higher palliative needs, while more basic skills were shared with providers whose patients’ needs are minimal.
For example, a company-wide initiative to improve advance care planning (ACP) in the comprehensive care model that already exists within CareMore has been implemented. A training series on ACP was developed by the train-the-trainer physician, and includes a pre-test, a series of video modules, a series of role-play sessions, and a post-test. This ACP training was launched to all Advance Practice Clinicians and physicians who provide routine care to CareMore members.
Further training has been provided on an ongoing basis in the form interactive micro-learning sessions, where high-yield palliative care pearls and up-to-date evidence in the field are shared with clinicians during recurrent meetings. The more advanced generalists received training on prescribing opioids in frail populations and on the complex goals of care discussions with patients with advanced illness. Furthermore, the USC palliative care mentor has been available during some of these interactive learning sessions to complement the training provided by the train-the-trainer clinician.
Quantitative metrics — such as completion of advance directives and physician or medical orders for life-sustaining treatment (POLST/MOLST), and utilization of acute care and ICU resources — are being tracked. Qualitative metrics also are being tracked, including patient satisfaction, provider comfort with palliative care concepts, and health system loyalty. More than 55% of patients at CareMore now die while on hospice care, a percentage that CareMore aims to increase to at least 70%. This increased utilization of hospice is an expected outcome of this training, given that there will be a greater focus on palliative care earlier in the patient’s serious illness trajectory.
Further opportunities may become possible in a health system such as CareMore, where there is national presence and regional markets are composed of their own innovative teams and unique needs. Clinicians who are identified in their regional markets may themselves become champions in palliative care and continue to further the training in their own markets. Attention should be paid as the training practices move further away from the original intensive training, to avoid a dilutional effect on the quality of the original content.
Training clinicians to train fellow clinicians in high-quality palliative care practices is an effective technique, and in the USC-CareMore example, the partnership dramatically increased access to non-hospital–based palliative care in the community.
The train-the-trainer model offers a way to address the substantial lack of high-quality palliative care available in the community. It alleviates anxiety in generalists who, with the training, are now more comfortable providing the delicate care needed, and it liberates palliative care teams to focus specialized care where and when it is truly needed. In the future, standardized approaches to experiential training can be created, tested, and disseminated via trainers and champions who have undergone the more intensive training.
While this model cannot replace the expertise of fellowship-trained specialists, it can help close the skills gap among primary providers. Should the popularity of these train-the-trainer palliative care programs grow along with the priority given to them, we may succeed in eliminating the unnecessary and harmful division between palliative and curative care.