1.2. Definition of Palliative Medicine
According to the Center to Advance Palliative Care (CAPC), Palliative Care and its medical subspecialty, known as Palliative Medicine, are defined as the “specialized medical care for people living with serious illness.” [1
]. Palliative Care is the relief of suffering and soothing of symptoms caused by disease or illness, this is care provided by any member of a healthcare team. Palliative Medicine is a fellowship trained medical subspecialty providing expert level Palliative Care to patients with serious illness. The illness may be considered serious in a variety of ways, including illness that is incurable and/or life-threatening, that manifests with difficult symptoms or requires multiple hospital admissions for treatment, or illness that drastically changes a patient’s quality of life. Palliative Medicine is provided by a workforce of providers, including physicians, advanced practice providers, nurses, chaplains and social workers. Some teams may include art and music therapists, pharmacists and child life therapists as well. These providers work with patients’ specialists to provide pain and symptom management, communication expertise, emotional, spiritual and psychosocial support as well as end-of-life care when appropriate. The goal of Palliative Medicine is to alleviate the burden of serious illness through the improvement of quality of life by addressing gaps in symptom management and communication. Palliative Medicine involvement is appropriate for any age and any stage of a serious illness and can be provided alongside curative treatment with additional services if death occurs (Figure 1
Palliative Medicine and Hospice (end-of-life care) are often thought to be synonymous but Hospice is a small role of Palliative Medicine (Figure 2
). End-of-life care is care of a patient in their final hours or days is one aspect of Palliative Medicine, often performed through Hospice care. Hospice care is the treatment of a person at the end of life, which is recommended when a patient’s prognosis is six months or less. Hospice care is available to patients through the Medicare Hospice Benefit covering the cost of end of life care for patients with Medicare Part A and certification of a terminal illness by both a hospice doctor and the patient’s usual physician (Figure 1
). Hospice also provides caregiver and family support and bereavement services after a patient’s death. Palliative Medicine teams often coordinate and/or provide hospice care.
1.3. Care Pathways and Use in Palliative Medicine
The epidemiology of dying is evolving. The verification of a terminal illness from a patient’s usual physician is important as death now often follows an extended period of health decline without a clear entry point to the dying phase. The use of advanced interventions has made conversations around health care planning and eventual hospice care that much more important. Novel therapies are also disrupting abilities to accurately prognosticate outcomes of severe illness, leading some health systems to use pathways to trigger Palliative Medicine consults, though at present care pathways in Palliative Medicine are rare. The pathways health systems use to trigger Palliative Medicine consults often include the following [3
Readmission from long term care facilities
Frequent admissions in a set time (e.g., greater than three admissions in one month)
More than one admission for a terminal illness
Advanced or metastatic cancer, which is not expected to benefit from cancer-directed therapy
Difficult symptom management, which needs specialty intervention
A discordance between goals of care and advanced directives
Critically ill/terminally ill patients without advanced directives
The European Association of Care Pathways consensus meeting in 2005 defined a care pathway as “a methodology for the mutual decision making of care for a well-defined group of patients during a well-defined period”. Defining characteristics of care pathways include an explicit statement of goals and key elements of care based on evidence, best practice and patients’ expectations. The definition may also include facilitation of how communication occurs, coordination of roles and sequencing of the activities of the multidisciplinary care team between patients and their relatives. The documentation, monitoring and evaluation of variances and outcomes as well as the identification of appropriate resources must also occur in care pathways [4
Primary clinical care pathways are structured—sometimes multidisciplinary—plans used by health services to outline algorithms of care for patients with specific diagnoses or clinical problems. These pathways have developed as treatment decisions, which evolved from evidence-based medicine. The pathways provide a link to create local protocols for clinical practice from guidelines [5
]. Often primary clinical care pathways provide a standardized approach towards a specific clinical problem and impact hospital metrics, including the length of stay, cost and quality of care, leading to the ability to measure outcomes as a result of applying these pathways.
A non-small cell lung cancer (NSCLC) pathway has been used at Dana–Farber Hospital in Boston since 2014. The development of this pathway occurred due to a large number of patients being seen with NSCLC, the complexity of this cancer and wide variation in oncologists’ practices in treating this cancer. A standard algorithm of treatment options was created with flags requiring override that pop-up in the electronic medical records when clinicians order therapies that deviate from the algorithm. The Dana–Farber NSCLC pathway has decreased the outpatient cost of care per patient by nearly $
15,000 while maintaining median survival. The 25% reduction in cost was attributed widely to the decreased use of antineoplastic drugs as a part of the pathway. Using this care pathway, the institution saw cost savings without compromise of care or survival outcomes. Researchers at Dana–Farber are also evaluating whether the NSCLC pathway has an impact on patient emergency room visits and hospitalizations [6
]. As hospitals look to impact the cost and quality of care, hopefully, more care pathways in Palliative Medicine will develop in the future.
The Liverpool Care Pathway was developed in 1997 as a pathway to provide a template to non-Palliative Medicine specialty providers of evidence-based, multidisciplinary care of patients at the end-of-life and included support for caregivers and families with the intent to provide Palliative Care across the entire United Kingdom health system. The data from the program showed that it improved knowledge of when and how to stop futile therapies and how to communicate with patients and families about death and dying. This pathway also provided evidence that improving communication between medical staff and between the medical staff and patients and their families had positive outcomes for patients [7
]. The program was abruptly discontinued in 2014 due to various criticisms from national reviews.
The discontinuation of the Liverpool Care Pathway, which was the most used end-of-life care pathway ever, raised the question of whether end-of-life care pathways for the treatment of the dying were effective. In a 2016 Cochrane review of end-of-life care pathways, only one study met inclusion criteria and only 34% of patients in the study were cared for in accordance to the pathway. Minimal patient outcomes were reported. There are limited studies to provide sufficient data regarding the clinical effectiveness of end-of-life care pathways [8
While few end-of-life care pathways have been used, there are even fewer pathways focused solely on Palliative Medicine for patients earlier in their disease trajectory of serious illness. Evidence supporting care pathways for acute and chronic disease management can be drawn from many areas of medicine and some have Palliative Medicine integrated into them [9
]. Prominent examples are the pathways of cancer management published and regularly updated by the National Cancer Care Network (NCCN). Palliative Medicine now has a primary pathway under the NCCN as a guide to Oncologists [10
The true benefit of a care pathway is applying consistency to the way a medical subspecialty is practiced and the data it can provide, by allowing for comparisons of treatment methods and patterns. Pathways also allow consistency in teaching. However, care pathways also allow for flexibility to make exceptions when clinicians need to use their clinical judgment to solve a problem. Creating care pathways within Palliative Medicine provides the ability to standardize features of the practice, including the structure, funding, composition of team members and services provided. However, there are challenges to creating Palliative Medicine care pathways for chronic, non-malignant diseases, such as advanced neurologic or cardiac diseases. These challenges include the wide variety of diagnoses that fall under these medical specialties, difficulty in predicting duration and course of illness, types of medical interventions required to manage the disease and lack of Palliative Medicine clinician experience with these diseases or their advanced medical interventions [10
Although the NCCN has established a Primary Palliative Medicine care pathway, there are challenges to this pathway, even in Oncology, including the need for a wide variety of services for these patients. In cancer care, Palliative Medicine clinicians often see patients at diagnosis if symptoms are distressing and follow them through survivorship if long-lasting effects of treatment remain [10
]. Another unique challenge in Oncology is that each patient experience is unique and the components of Palliative Medicine required to meet these individual needs are often not available due to lack of funding or resources. Currently, the American Society of Clinical Oncology (ASCO) recommends that all patients with a new diagnosis of cancer have an interdisciplinary Palliative Medicine evaluation within eight weeks of diagnosis, that focuses on symptom management, clarification of treatment goals, supporting of distress and coordination of care [11
]. Following this care pathway is dependent of the region of practice and what types of Palliative Medicine services are available.
Integrated care pathways are those that include Palliative Care as a part of usual patient care, with adjustments to their involvement as the illness progresses. Research has shown that improvements occur within the overall quality of care and with Palliative Medicine delivery when integrated care pathways are used. Examples of integrated pathways include the care of patients with advanced heart failure who are generally referred when they develop symptoms of New York Heart Association (NYHA) Class III or IV or American College of Cardiology (ACC) or American Heart Association (AHA) Stage D disease [12
]. Patients with heart failure have a large burden of symptoms including dyspnea and fatigue, high psychosocial distress of patients and caregivers and the increasing need for advance care planning as their disease progresses. Additionally, the discussion surrounding complex medical decisions, involving organ transplant and advanced mechanical circulatory options is crucial. One aspect required for evaluation for a left ventricular assist device (LVAD), a type of mechanical circulatory option, is an evaluation by a Palliative Medicine clinician for symptoms and preparedness planning.
Few and far, both primary and integrated care pathways in Palliative Medicine require further research. As of now, two Cochrane system updates did not identify any studies that met minimal criteria for analysis inclusion to support use and dissemination of Palliative Care pathways [19