Key elements of person-centered care include the elicitation of care goals and treatment preferences. This exploration naturally leads to the development of a care plan that aligns with patient and family values. Care goals are dynamic in nature and deeply contextualized by patients’ personal definition of what constitutes meaning and significance, their cultural and social framework, their experience of illness, and the priority they place on certain health outcomes. Providers must become adept at eliciting and understanding patient’s and caregiver’s values and goals, recognizing that these goals will shift over time as their illnesses progress and/or what is important to them reprioritizes. A number of tools are available to elicit patient’s and caregiver’s values and goals. The questions in Table 12.2 offer examples of questions that can be used to better understand patients’ values and goals.

Along with communication skills, the ability to prognosticate is one of the most important skills of those involved in the care of the very ill and one of the critical competencies in generalist and specialty level palliative care [5, 6]. Providing a time frame and when necessary, conveying a sense of urgency in light of limited life expectancy allows patients and families to make informed decisions as to how time their time will be spent and the opportunity to prioritize activities and treatment plans. The skill of prognostication requires knowledge of the typical trajectories of illness and insight as to the implications of physical signs and symptoms of illness as they manifest alongside and are impacted by the psychosocial and spiritual dynamics of the individual and their family. The provider must be familiar with the evidence from the literature, and have the ability to gather complete information in a patient assessment including exploring the psychosocial and spiritual aspects of the individual and family. The complex thinking and decision-making skills involved in prognostication also relies heavily on the wisdom honed from clinical experience. Most importantly, the ability to communicate prognosis to a patient and family is a critical skill—especially to know, because of culture, religion, or patient/family preferences what to convey, how, and to whom. Communication skills in delivering serious news require expert teaching, reinforcement through modeling and mentoring as well as intentional practice, ideally through the teaching technique of role play or using standardized patients. Increasingly, development of effective communication skills is a focus in the training of healthcare professionals. Table 12.3 provides a few considerations when engaging in conversations around prognosis.

Patients for whom home is the optimal setting for care delivery most often have advanced or complex illnesses coupled with significant functional impairment or disability. These individuals often experience a significant symptom burden as a result of their underlying diagnoses and comorbidities. Managing symptoms in the home setting presents unique challenges, particularly if symptoms are dynamic, tend to rapidly escalate or require intravenous medications for effective relief. In a study of 318 adults followed by a home-based medical care program, 43 % reported severe burden from one or more symptoms. The symptoms with the highest level of severity were depression, pain, appetite, and shortness of breath [7]. We briefly discuss management of these four most prevalent symptoms.

Depressive symptoms are prevalent in patients with advanced, life-threatening illnesses—up to 42 % experience depression at the end of life. Depression may be an indication of inadequately managed symptoms; therefore, addressing pain, dyspnea, and other symptoms as part of the overall treatment strategy is a key first step to addressing depressive symptoms.

Very few pharmacologic studies have been conducted that address depression in advanced illness; consequently, therapeutic recommendations do not differ greatly between palliative and nonpalliative patients. For patients with advanced illness, three factors influence choice of antidepressants (Table 12.4): (1) the time frame for treatment, (2) concurrent medical conditions, and (3) pharmacologic properties of the drug.

With respect to time frame for treatment, patients with a life expectancy of several months may benefit from a SSRI or tricyclic antidepressants (TCA) as long as the need for immediate onset of action is not present. The European Association for Palliative Care recommends mirtazapine, sertraline, and citalopram as reasonable considerations for first line therapy. For those who are weeks to a few short months from death, psychostimulants such as methylphenidate and modafinil offer more immediate onset within 24–48 h of initiation of therapy [9]. Concurrent medical conditions also guide therapy. For those with a history of seizure disorder, bupropion should be avoided. For those with chronic pain, antidepressants that also have a positive impact on pain (such as venlafaxine and duloxetine) should be considered. Relevant pharmacologic properties of antidepressants include availability of liquid formulation and side effects of the medication. Antidepressants that are available in liquid formulation (for when swallowing pills becomes more difficult) include fluoxetine, sertraline, paroxetine, citalopram, escitalopram, doxepin, and nortriptyline. Side effects such as orthostatic hypotension, dizziness, constipation, and prolonged corrected QT (QTc) interval tend to be most pronounced with TCA. Weight gain can be a potentially positive side effect of SSRI and mirtazapine. Sedation is also common with mirtazapine and trazodone and may be beneficial to patients with insomnia and depression, whereas agents with more activating properties (psychostimulants, SSRI) may be a side effect that is more beneficial to those with fatigue or psychomotor slowing [8, 10].

Nonpharmacologic therapy includes supportive psychotherapy and existential therapy. Supportive psychotherapy involves supporting adaptive coping mechanisms and minimizing emotional reactions such as shame and self-loathing that contribute to distress. Existential therapy often focuses on self-worth and self-determination in the context of increasing loss of control. Common forms of existential therapy include dignity therapy, therapeutic life review, and meaning-centered psychotherapy. Dignity therapy, a brief individualized psychotherapeutic intervention targeted at psychosocial and existential distress, has been shown to increase dignity, purpose and meaning and reduce depressive symptoms. [11] The questions commonly used in dignity therapy to elicit better understanding of patient/caregiver needs can be easily adapted to the home setting [12]. A useful overview question is “What do I need to know about you as a person to give you the best care possible?” Other related questions include many listed in Table 12.2 and questions to elicit other appropriate avenues for social and spiritual support: Who else should we get involved to help you through this difficult/challenging time?”

Pain is a common symptom experienced by individuals with serious or life-limiting illness, regardless of the underlying etiology. Pain is multidimensional in nature and can be exacerbated by depression, existential distress and psychosocial circumstances. Because of the complex nature of pain, careful assessment is needed to optimally characterize pain, determine, if possible, the cause of each type of pain being experienced and base management on the nature of the pain. Key elements of pain that ideally should be elucidated include character, location, frequency, relieving and aggravating factors of the pain, response to previous medication and treatment, and severity.

Pharmacologic pain management includes opioids, nonopioid analgesics (including acetaminophen), and nonsteroidal anti-inflammatory drugs (Table 12.5). Nonpharmacologic management may include guided imagery, transcutaneous electrical nerve stimulation (often facilitated through home physical therapy), therapeutic exercise, and treatments often considered alternative or complementary, such as acupuncture, massage, and other mind-body approaches.