CHAPTER 5
Palliative Care
Eve S. Faber, MD • Jessica Stetz, MD
Palliative care is an approach to care that focuses on quality of life for patients and families living with life-threatening illnesses. Through early identification and multidisciplinary management of pain and other distressing symptoms, palliative care seeks to prevent and relieve suffering by addressing the whole person and his or her physical, psychosocial, and spiritual needs (World Health Organization [WHO], 2013).
According to the WHO’s definition, palliative care:
Provides relief from pain and other distressing symptoms
Affirms life and regards dying as a normal process
Intends neither to hasten nor to postpone death
Integrates the psychological and spiritual aspects of patient care
Offers a support system to help patients live as actively as possible until death
Offers a support system to help the family cope during the patient’s illness and in their own bereavement
Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated
Will enhance quality of life, and may also positively influence the course of illness
Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications
INTRODUCTION
Why does palliative care matter to primary care providers (PCPs)? With advances in technology over the past century, life expectancy has increased dramatically. People are living longer with a range of chronic illnesses. PCPs must help patients to navigate the course of these illnesses. Death and dying are natural ends to life. All people die. PCPs will universally care for patients who are in the process of dying. Preparing to care for dying patients is an essential part of primary care training. With advances in treatment, patients are living longer than ever before with serious life-limiting conditions. All PCPs must expect to participate in their care. Improving skills needed to care for dying patients can help providers to feel more comfortable with this part of their work, improving both patient quality of life and quality of death.
Ten percent of deaths are sudden and unexpected, as in trauma or sudden cardiac arrest. Ninety percent of deaths follow relatively predictable trajectories: (a) a slow decline followed by a precipitous demise (i.e., cancer); (b) chronic organ failure punctuated by periodic crises (i.e., chronic obstructive pulmonary disease [COPD], congestive heart failure [CHF]); (c) a slow and less predictable decline, as in dementia and frailty (Murray, Kendall, Boyd, & Sheikh, 2005). Palliative care models and skills can be applied to patients with many life-limiting illnesses, including, but not limited to, cancer, dementia, coronary artery disease, CHF, cerebral vascular accidents, COPD, frailty, end-stage renal disease, HIV/AIDS, and progressive neurological diseases like multiple sclerosis and amyotrophic lateral sclerosis.
In a number of studies, palliative care has been shown to decrease costs and improve patient, family, and provider satisfaction with quality of care, quality of life, and family and caregiver satisfaction with quality of death (Brumley et al., 2007; Temel et al., 2010). Additionally, a landmark study of patients with advanced non-small-cell lung cancer demonstrated a 3-month increase in life expectancy in patients who received palliative care over usual care (Morrison et al., 2008).
When asked, approximately 75% of Americans said they wish to die at home. In fact, fewer than 25% actually die at home, and the other 75% die in acute care hospitals or skilled nursing facilities (Fischer, Min, Cervantes, & Kutner, 2013; National Center for Health Statistics, 2011; Teno et al., 2013). Why is there this discrepancy between patients’ perceptions of their wishes to die at home and the reality of death? The reasons are complex. The delivery of health care has become increasingly technology based and the moment of death is often delayed with advanced life support, such as mechanical ventilation, circulatory support, and hemodialysis. Dying is no longer simply the moment of death but rather the protracted process at the end of life, the final task of human development. PCPs can facilitate these steps through open communication, assistance with advance care planning, and through the exquisite relief of distressing symptoms.
There are specific skills that are central to successful palliative care. PCPs can learn these skills and include them in their practice. PCPs can progress to a level of mastery through which they empower patients to make informed end-of-life decisions about care, and improve provider satisfaction with the care delivered.
GIVING BAD NEWS AND PROGNOSTICATION
A provider’s initial contact with a patient who is learning of a life-altering diagnosis can be difficult. Learning to communicate bad news is essential to caring for patients. Like Elizabeth Kübler-Ross’s stages of grieving (1997), accommodating a new diagnosis may progress through stages, through which patients may begin to consider a new set of options. Although there are many models for delivering bad news (Baile et al., 2000; Vandekeift, 2001), the common threads include providing a private and comfortable space; limiting interruptions; establishing the patient’s level of understanding; explaining the context of the current discussion; and communicating the specific diagnosis clearly, simply, and in a language the patient understands. After the news or diagnosis has been delivered, the clinician must respond to the patient’s concerns and questions and establish a plan for moving forward. Periods of quiet reflection may occur, or outbursts of grief. People have a huge variety of emotional reactions to receiving bad news. They may be sad, angry, have difficulty expressing feelings, or seem inappropriately unconcerned. Providers must learn to deal with each of these responses. Remembering that the patient’s reactions are directed at the diagnosis and not at the provider is important. Providers can reflect back the emotion, thereby validating the patient’s experience. Each patient brings to the care relationship an individual set of characteristics that influence how he or she understands and processes medical information. Previous experiences, ethnicity, religious beliefs, and character traits all affect a person’s ability to cope with bad news. Using clear language and avoiding complex medical jargon improves patient understanding. Encouraging patients to ask questions and to restate the information in their own words will ensure that they have grasped the central information. The provider must continuously gauge the patient’s responses and need for clarification and support. Providers may not realize that there are misunderstandings unless specific questions are asked and patients are asked to restate the diagnosis in their own words. Even experienced clinicians find that patients have not understood the implications of specific results or prognoses despite discussions. Effective listening skills and clarification are critical. Providers will need to revisit these conversations throughout the progression of illness.
Prognostication is the skill of giving prognosis. Not a routine part of provider education, prognostication is one of the most important and valued tasks a provider performs. Patients want and need information about prognosis and ultimately the expected time until death. Understandably, providers find these questions difficult to answer, in large part because it is difficult to know when exactly a person will die (Christakis & Lamont, 2000). Aggregate data of 5-year survival often may not help in determining the time until an individual’s death. Acknowledging the uncertainty inherent in making predictions is essential to maintaining patient and family trust. However, providers have a responsibility to give patients considered opinions about prognosis, illness progression, and realistic life expectancy. These estimates are often expressed in minutes to hours, hours to days, days to weeks, or weeks to months. Health care professionals are educated and trained for many years to acquire experience that patients need to inform decisions about care. While it is painful as a provider to forecast death, patients will ask, and will usually find an honest response a relief. Prognostication allows patients the opportunity to appropriately plan for themselves and their families.
Through experience, providers become more skilled at eliciting unspoken concerns and tailoring information to each patient. Even novice clinicians can employ active listening techniques and a calm demeanor to deepen patient–provider discussions.
ADVANCE CARE PLANNING
Throughout the course of caring for a patient with a life-limiting illness, the PCP will have many opportunities to discuss patient wishes. Guiding patients to establish goals of care cannot be overestimated. Defining goals of care is the heart of providing palliative care. It facilitates true patient-centered care. Throughout the process, it is important to remember that palliative care intends neither to hasten death nor prolong life, but rather aims to support the patient and family through the process of living with an illness and dying with dignity. Advance care planning is the process of providing patients with a voice for their choices about specific interventions, whether via a health care proxy (a person) or living will (a document). Advance care planning allows patients to decide whether the benefits of particular interventions outweigh risks, and whether aggressive interventions and invasive procedures align with goals of care.
In palliative care, there is no right or wrong answer to the question, “How do you want to be treated as you become sicker?” Patients come to this discussion with a variety of life experiences and may be certain about wishes for life-prolonging care such as resuscitation, intubation, and surrogate decision making. Others may have no frame of reference for these discussions and may require a series of appointments and extensive education about available options, risks, and benefits. Some may come to the office with living wills specified and health care proxies designated. Others may never have heard of these options. Therefore, each discussion must begin with an assessment of the patient’s level of understanding, the patient’s goals of care, and the patient’s questions. First, the provider must listen. Then the provider must ask probing questions that help the patient to articulate how he or she wishes to continue living with the condition and, eventually, how he or she wishes to die.
It may be easiest to start by ascertaining the patient’s surrogate decision maker or health care proxy. “If you are not able to speak for yourself, who would you like to make decisions for you?” is a common first question. The conversation then leads directly into finding out what, if anything, the patient has discussed with that person and allows the provider to introduce the idea of planning for death as well as living with illness. Further discussion allows the patient to ask questions and express wishes about life-sustaining therapies such as artificial feeding, cardiac resuscitation, and intubation. It is incumbent on the provider to provide information about likely outcomes of these treatments, as the public perception of benefit may be different from the providers’ reality, or the evidence to support the treatment (Diem, Lantos, & Tulsky, 1996; Girotra et al., 2012).
In the United States, surrogate decision making and advance care planning are not legislated nationally; laws and regulations are state specific. Providers must familiarize themselves with state laws and local standards, as well as hospital risk management policies. Many states now have standardized physician orders on which to document wishes for life-sustaining therapies, and others are in the process of developing protocols. For the most up-to-date information, consult www.polst.org in the United States and local governmental agencies in other countries.
Rarely, some patients may express the wish to die at a time of their choosing and ask for physician assistance in this effort. Although physician-assisted suicide is outside of the scope of this chapter, we direct the reader to local laws to learn about legislation in their areas should this become an issue.
Family involvement in the planning process may be helpful to the provider and most patients. It is appropriate to ask patients if they would like to have family members present at visits, especially designated decision makers. This improves communication between the patient, family, and provider and can help the provider when there is conflict. In the event that the patient does not wish to involve family in discussions, providers should document discussions and facilitate advance care planning.
PHYSICAL SYMPTOMS