Palliative Care

Palliative Care: What it is and What it isn't

Despite being one of the most poorly understood medical specialties, palliative care does some of the most important work and is at the forefront of delivering care that addresses holistic needs of the patient. 

What is palliative care?

Palliative care is an interdisciplinary medical specialty that has evolved in definition and scope over the years. Initially, it was care provided for cancer patients that were no longer receiving active treatment and therefore dying from their disease. It wasn’t until the 1980s that palliative care services were provided outside of hospice programs (the distinction between palliative care and hospice will be discussed throughout this article).

Today, the World Health Organization (WHO) defines palliative care as “an approach [to medicine] that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” The Centers for Medicare and Medicaid Services (CMS) has said that “palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.” The Center to Advance Palliative Care defines the field as “specialized medical care for people with serious illnesses…focused on providing patients with relief from the symptoms, pain and stress of a serious illness—whatever the diagnosis.” They also make the important point that “it is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.”

All of these definitions convey the same concepts: that palliative care exists to complement traditional medical care by addressing issues that are of critical importance to the patient, but that a specialist physician with no palliative care training doesn’t have the time, resources, or training to address. Let’s use a hypothetical adult patient who has been diagnosed with lung cancer to illustrate this concept. First, their treatment will differ depending on cell type (non-small cell versus small cell), tumor stage, molecular characteristics, along with the patient’s medical history. After reviewing all this clinical data and debating on different treatment options, the oncologist often does not have the time or energy to adequately address the patient’s other often emotionally intense concerns. These include questions about their prognosis, apprehension over spiritual matters, the psychological distress experienced by both patients and their family members, and other similar anxieties. This is where palliative care steps in. 

Palliative Care Services: A Broad Overview

Palliative care plays a primary role in providing management of distressing symptoms in patients with serious illnesses. These symptoms commonly include pain, shortness of breath, anxiety, depression, fatigue, various gastrointestinal symptoms like nausea and vomiting, insomnia, delirium, anorexia, and many others. One study of 592 patients showed that patients who received palliative care interventions had an 87 percent improvement in pain or other symptoms. The deliriogenic nature of severe pain is well understood, so the importance of managing pain to prevent delirium and the multitude of complications it causes is obvious.

Another important palliative care service is establishing goals of care. Having a “goals of care discussion” means working with patients and their loved ones to determine their priorities of care and what outcomes are most important to them. This conversation frequently includes exploring disagreements amongst family members with conflicting goals and/or ideas of what their incapacitated loved ones would most likely want. Once established, palliative care teams ensure that these priorities inform all clinical decisions made by the various other specialists involved in care of the patient. Skilled communication is at the heart of providing care aligned with patient priorities, but studies have consistently demonstrated dissatisfaction amongst patients when it comes to communication between family members and doctors. A 2016 survey found that 71% of physicians stated they had never received training on communication with patients about goals of care and about half of them endorsed feeling unprepared to conduct them. Palliative care physicians receive significant amounts of this training and have even developed consensus guidelines to optimize communication-related outcomes.

The third general category of services provided by palliative care includes psychosocial support. This domain most clearly highlights how important the interdisciplinary aspect of this field is, with most programs utilizing some combination of social workers, psychologists, psychiatrists, chaplains, and bereavement counselors. To illustrate the benefits of providing psychosocial support to critically ill patients, consider depression. This condition has a prevalence rate of up to 60% in patients with terminal illness and is associated with higher utilization of healthcare services and significantly increased mortality rates. A common misconception amongst healthcare providers is that depression is a normal aspect of illness that they therefore fail to diagnose and treat, but critically ill patients respond to standard depression treatments (both psychopharmacological and supportive psychotherapy and/or counseling) similarly to other populations. Untreated depression is associated with decreased functional capacity and poorer quality of life, and studies have shown that treating physical symptoms can also improve depression.

The final broad service provided by palliative care teams is coordinating patient care amongst a flurry of specialists, interventions, and treatment settings within an already fragmented and complex medical system that frequently confuses patients and their families. The interdisciplinary nature of palliative care allows for assistance to patients and families in understanding and regaining control over their care plans, ensuring communication among and between the multiple clinicians involved in the patient’s care, and making sure future care occurs in the setting most appropriate to their needs.

Hospice Model of Palliative Care

In the United States, hospice care eligibility is restricted to those patients who have had two different physicians offer a prognosis of less than six months to survive. Hospice services exist to deliver palliative services for patients at the end of life when it has been determined that further curative or life-prolonging therapy would be futile and non-beneficial. They also must forfeit insurance coverage for disease treatment. Hospice care is most commonly delivered around the clock in the patient’s home by healthcare providers trained in providing home health.

How to Identify Patients Appropriate for Palliative Services

The most well-established methods for identifying patients in need of palliative care services have been identified for inpatient hospitalized settings. A 2011 consensus statement from the Center to Advance Palliative Care proposed the criteria shown below.

Criteria for Palliative Care Assessment at Time of Hospital Admission

Comprehensive Patient Assessment in Palliative Care

Before looking at some of the specific parts of patient assessment that are unique to or more heavily emphasized in the field of palliative care, it may be useful to consider the concept of total pain. This term, coined by the founder of modern palliative care and hospice Dame Cicely Saunders, refers to the complex mechanisms and manifestations of suffering, including its physical, emotional, socioeconomic, and spiritual components. Thus, total pain is an incredibly individualized experience. The way someone perceives their physical pain, their body image, their understanding of their illness, their wishes, their relationship, their values, and their spiritual beliefs (or lack thereof) not only vary tremendously between different people but also plays a critical role in the way that they experience their illness and suffering. 

Generally speaking, a comprehensive palliative care assessment includes all of the basic, foundational components comprising a standard medical evaluation (patient history, physical exam, labs, etc.). The palliative assessment features additional unique content and focus areas that ultimately distinguish it from standard medicine. A thorough palliative care assessment is not typically completed in one session and instead must be broken up over multiple encounters due to complexity of clinical content and the time needed to develop appropriate rapport. Thus, a closer look at these specifics is warranted to paint a clear picture and practical understanding of the field’s purpose and relevance in medicine today.

There are six well-delineated domains of patient assessment that make up the palliative care assessment. Although these areas of inquiries are of central importance to the palliative care team, most medical specialities often do not take them into consideration. The domains are as follows:

• Physical Symptoms
• A systematic literature review looked at the most common physical complaints that patients with an end-stage illness (in this case, AIDS, heart disease, COPD, cancer, and chronic kidney disease) endorsed. They identified the 11 most prevalent symptoms as pain, depression, anxiety, confusion, fatigue, breathlessness, insomnia, nausea, constipation, diarrhea, and anorexia.
• When any symptom is identified, the palliative care specialist will ask the standard follow-up questions done in all patient encounters (onset, duration, location, etc.). They will also inquire about the meaning of this symptom to the patient, or, the degree of burden the patient perceives to be causing.

• Psychological, Psychiatric, and Cognitive Symptoms
  • The key symptoms here include depression (not adjustment or grief), anxiety, delirium, and maladaptive coping with illness. 
  • Some important factors that increase the likelihood of these things happening (and their severity) include rapidly advancing illness, steroid medications, metabolic abnormalities, financial strains, and uncontrolled pain), and the clinician should be sure to screen for these accordingly and ideally formulate solutions using the interdisciplinary team. 
  • Of note, screening for depression using a brief screening tool (like Patient Health Questionnaire-9) is helpful for identifying patients who may need further evaluation to help differentiate between a depressive mood disorder as opposed to sadness, grief, and/or demoralization.
  • Coping refers to the way a patient adjusts and balances themselves psychologically to deal with the challenges of a life-threatening illness. Broadly speaking, there are two general categories of coping mechanisms: adaptive and maladaptive. Adaptive coping skills include a variety of things like humor, acceptance, planning/proactive management, open communication/seeking support from others, reframing the situation cognitively, and sublimation. Utilizing these techniques has been shown to enhance functional, emotional, and spiritual wellbeing in a patient regardless of how rapidly their illness may be progressing.8 Maladaptive coping mechanisms are associated with increased stress and higher burden of illness. Some examples of these unhealthy strategies include denial, disengagement, avoidance/isolation, self-blame, constant worry, substance abuse, and others. Perhaps unsurprisingly, these responses have been associated with increased stress and higher burden of illness. In one study, approach-oriented coping (active coping, positive reframing, and acceptance) was associated with higher quality of life and reduced depressive symptoms among cancer patients receiving early palliative care. A patient's personality and cultural paradigm can contribute to whether the emotion regulation style is adaptive or maladaptive, and coping styles must be assessed by the palliative care specialist considering the clear influence they have on patient outcomes.

• Illness Understanding and Care Preferences 
  • This domain focuses on the degree of informed participation a patient will have when it comes to making decisions and plans for matters related to their illness. Goal-concordant care describes how well the treatment a patient is receiving aligns with their informed preferences/goals of care. Providing goal-concordant care is of the utmost importance for the palliative care specialist, and a patient’s decision-making capacity must be assessed to determine whether or not a surrogate decision-maker is required. 

• Patient’s Socioeconomic Status
  • Patients suffering from advanced illness often face significant financial and social challenges. This statement is also true of their family members and friends. 
• Existential and Spiritual Concerns
  • After the initial shock of receiving a diagnosis of a severe, advanced, and/or life-threatening disease wears off, patients are often left to grapple with heavily-weighted and emotionally laborious questions. Topics related to spirituality and existential matters have traditionally not received any consideration by the medical field. Palliative care, however, seeks to change this, using standardized tools to help clinicians approach these topics with their patients.

• Continuity of Care
  • Transitioning between different healthcare settings in the United States places the patient at risk for fragmentation and duplication of care while increasing the risk for medical errors. The literature has shown that certain populations will experience increased complications and worse outcomes in general. Therefore, comprehensive palliative care assessment aims to discern what transitions are avoidable and how to better coordinate care to avoid trauma, confusion, and unwanted treatment. 
  • Care coordination should involve clinicians and non-clinician members of the interdisciplinary team, such as case managers and social workers.

The unique focus of palliative care assessment is that it is entirely focused on the needs, wishes, and desired outcomes of patients and, and in many instances, their loved ones. Instead of a patient’s changing labwork or other pathophysiological parameters, palliative needs assessments focus on a patient’s own changing preferences and desired outcomes. 

Palliative care specialist, Dr. Egiddio Del Fabbro, stated in an interview “earlier palliativeinterventions are associated with better outcomes.”

The Future of Palliative Care in the US

Palliative Care has grown tremendously since the World Health Organization first officially designated it as its own distinct medical specialty in 1990, which was around the time its first fellowship training program was formed. Since then, the field has experienced explosive growth and will continue to do so in the future. Estimates show that by 2030, roughly 20% of the US population will be 65 years or older.  This prediction means that there will be an ever-increasing demand for end-of-life care, chronic illness management, and other palliative care services. Another major driving factor for the growth of the field are the multiple clinical trials that continue to consistently demonstrate the benefits of palliative care, which include higher levels of provider and patient satisfaction, cost savings, decreased stress amongst caregivers, and more. Palliative care truly embraces the concept of caring for the “whole person,” a concept that the rest of the medical field has had trouble succeeding with. The field has truly turned what was once an idealistic, nebulous concept into something more pragmatic and regularly practiced. Because of this, there have been cultural shifts amongst patients and providers alike towards prioritizing quality of life over aggressive and potentially low yield interventions. With continued expansion into many other medical specialities besides oncology, you can be assured that palliative care models will soon become a commonly utilized and embraced approach to patient care.

Written by Jay Fickle

Edited by Michael Stein

References

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