Jennifer Shin, Jennifer Temel
INTRODUCTION
Comprehensive end-of-life (EOL) care is an essential component of oncology. While we aim to cure as many patients as possible, many of them ultimately die of their disease. Our role as clinicians includes guiding patients and their families through the EOL. Comprehensive EOL care encompasses pain and symptom management, psychosocial and spiritual support, care-giver/family support, and discussions about goals of care and advance care planning. This requires skills in communication and symptom management, as well as knowledge of the services available in the community. A multidisciplinary approach is often helpful in providing comprehensive EOL care, and the team may include physicians, nurses, social workers, chaplains, palliative care, and/or hospice.
END-OF-LIFE CARE COMMUNICATION
APPROACH TO DIFFICULT CONVERSATIONS
Patients and families consider communication to be one of the most important aspects of EOL care (1). Discussions about goals of care, treatment preferences, and advance care planning can be difficult for clinicians, as well as for patients and families. In order to lead patients and families through these discussions, clinicians should be proficient in communicating about EOL care. Similar to other components of medical care, these communication skills can be learned and practiced (2).
A clinician can approach a difficult conversation using a series of communication steps that may be remembered by using the mnemonic SPIKES (Table 22-1) (3, 4). The first step in EOL care communication is to prepare for the discussion by asking the patient who he/she would like present in the discussion and by arranging a quiet, private setting with sitting room for all participants (Setup). The clinician should be well prepared for the meeting and know the basic information about the patient’s disease, prognosis, and treatment options. The conversation should begin with the clinician establishing what the patient and family know about the illness (Perception) and what specific information they would like to know (Invitation). The clinician can then build on the patient’s illness understanding by clarifying realistic goals and addressing unrealistic expectations (Knowledge). In discussions regarding EOL care, patients and families may express a range of emotions, and it is important to allow them to express these feelings and to recognize and respond to them (Empathize). Finally, it is helpful for the clinician to summarize what was discussed, assess the patient and family’s understanding, and make a clear plan about the next steps (Summarize and Strategize). These steps can be used in various difficult conversations, including communicating bad news, discussing advanced care planning, and shifting from disease-directed therapy to palliative care (4–6).
TABLE 22-1 APPROACH TO DIFFICULT CONVERSATIONS
DISCUSSING PROGNOSIS, MAINTAINING HOPE, AND SETTING REALISTIC GOALS
Patients facing serious illnesses value being able to prepare for their death (7). Physicians can augment the time that patients have to plan for the last phase of their lives by having honest discussions about prognosis and goals of care.
A patient’s understanding of his/her prognosis may directly impact his/her decision-making at the EOL. Cancer patients tend to overestimate their chance of survival, which can lead them to choose life-prolonging therapies or invasive procedures rather than supportive care (8). Additionally, patients must have a clear understanding of the potential impact of therapies on their life expectancy and quality of life in order to make individualized decisions about their care (9).
One of the most difficult tasks in oncology is maintaining hope while preparing for inevitable death. Clinicians can address unrealistic hopes (e.g., cure) in an empathic fashion using “wish” statements (“I wish things were different”) (10), allowing clinicians to empathize with patients and support their hopes, while acknowledging the realities of their prognosis. “Wish” statements may also help clinicians reframe unrealistic goals and encourage patients to think about new individualized goals (Table 22-2). Although cure may no longer be a possible goal, other realistic goals should be identified (Table 22-2) and may include but are certainly not limited to prolonging life, relief of distressing symptoms, finding personal meaning, and maintaining independence. Clinicians may also encourage their patients to hope for quality time with their loved ones, closure to their lives, and a peaceful death.
TABLE 22-2 IDENTIFYING AND REFRAMING GOALS
In all stages of cancer, patients and families look to their oncologist for guidance. As the focus of care shifts from a disease-directed to a palliative one, oncologists have an ongoing duty to help patients make decisions that are concordant with their goals. A clinician should make recommendations for care aligned with a patient’s goals, including the management of symptoms and/or the recommendation of hospice. Although clinicians may be concerned about the impact that EOL discussions may have on patients and caregivers, such discussions have not been associated with higher rates of depression or worry (11). EOL discussions are associated with less aggressive care, including lower rates of ventilation, resuscitation, intensive care unit admission, and earlier hospice enrollment. In contrast, aggressive care is associated with worse patient quality of life and worse caregiver bereavement adjustment (11). The section “Approach to Difficult Conversations” provides a framework for ongoing discussions about goals of care. As these goals evolve, it is important for clinicians to provide individualized recommendations to help patients and families navigate the EOL.
ADVANCE CARE PLANNING
Advance care planning (ACP) is the process by which patients describe their preferences for future care in the event that they become incapable of making medical decisions. It is an important step to ensure that patients’ wishes are clearly documented if they are unable to express these wishes themselves. ACP is essential for any patient with a life-limiting illness and is ideally completed prior to a medical crisis or the very EOL. It is important for physicians to systematically introduce the topic of ACP with their patients, as some patients may have already specified their wishes and others may be waiting for their physicians to bring up the topic before creating an advance care plan.
Written advance directives are the basis of ACP and serve two main roles. First, they provide guidance regarding the aggressiveness of care a patient would desire at the time of a life-threatening event (living will). Second, they identify a health-care proxy (durable power of attorney for health care) to communicate a patient’s wishes if he/she is unable to do so himself/herself. The designated health-care proxy (or proxies if an alternate proxy is also assigned) should understand that his/her role is to provide decisions based on what the patient would want in that particular situation, not what the proxy would choose for himself/herself.
Advance directives (both living wills and health-care proxies) go into effect only when patients are unable to directly participate in decision-making about their care. There are certain state-specific documents that may be used (Table 22-3). The patient and proxy should have copies of these documents, and a copy should also be placed in the patient’s medical record.
TABLE 22-3 USEFUL RESOURCES IN ACP
Many of the terms used in a living will are ambiguous and require interpretation in the context of the current medical situation. Even when a patient specifies situation-specific instructions in his/her living will, it is impossible to include all of the possible scenarios that a patient may face at the EOL. However, the living will can serve as a catalyst for discussions about goals of care. It may be helpful to meet with the patient, family, and proxy to help guide these discussions with specific mention of some scenarios that patients may face (e.g., life-sustaining treatments in the ICU, artificial nutrition and hydration). Through this process, the patient can consider his/her preferences and make them known to his/her proxy, family, and care team.
A living will documents a patient’s preferences regarding medical care, but is not a medical order. A Do Not Resuscitate (DNR) order is written by a clinician to formalize the patient’s preference about resuscitation status. This order is usually written when a patient is hospitalized, although a physician may also sign an out-of-hospital DNR order form that a patient can take home (sometimes called a Comfort Care form). This instructs emergency medical personnel on the patient’s DNR status. The Physician Orders for Life Sustaining Treatment (POLST) is a form that translates patient goals and preferences into a more comprehensive set of medical orders. The POLST includes orders regarding cardiopulmonary resuscitation (CPR) but also extends to specific medical interventions (e.g., options for comfort measures only, limited interventions including hospitalization, and full treatment) and artificial nutrition/hydration. The POLST may guide discussions and formalize a patient’s preferences beyond resuscitation status. POLST programs exist or are in development in 34 states (12).
Initial conversations about treatment preferences and formalizing these discussions into ACP documents and orders should begin early in the course of disease in patients with advanced cancer. As patients decline, it can be difficult for them to think clearly about EOL care preferences. It is also challenging for family members to be objective about a patient’s goals when the patient is ill or hospitalized. By beginning this dialogue early in the illness and revisiting it periodically, discussions about EOL care preferences are normalized (13).
PALLIATIVE CARE, HOSPICE, AND BRIDGE PROGRAMS
PALLIATIVE CARE
Palliative care is patient- and family-centered care with the goal of anticipating, preventing, and reducing suffering and optimizing the quality of life for patients and families at all stages of a serious illness. It encompasses the management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care tailored to the patient and family’s needs. Palliative care can be initiated by the primary oncology team and augmented by consulting and collaborating with an interdisciplinary team of palliative care experts (14), including specially trained physicians, nurses, and often social workers, chaplains, and pharmacists. Palliative care teams can assist the oncology team with symptom management, psychosocial and spiritual support for patients and families, and advance care planning. Specialized palliative care can be administered in a variety of settings (e.g., inpatient and outpatient hospital settings, long-term care facilities, home, hospice), although there is great regional variability in the availability of these services. An important distinction should be made between palliative care and hospice: palliative care is appropriate for any patient facing a serious illness and can be provided concurrently with life-prolonging treatments, while hospice provides palliative care for patients with a prognosis of less than 6 months and who have agreed to focus on comfort as their goal.
In a randomized trial of patients with newly diagnosed metastatic non-small cell lung cancer, patients who were followed by palliative care specialists early in their illness received less aggressive EOL care and had a longer median survival than patients receiving usual care (15). This study and others have demonstrated that palliative care, when combined with standard cancer care or as the main focus of care, leads to better patient and caregiver outcomes (16–18). The National Comprehensive Cancer Network’s guidelines recommend that palliative care begin at diagnosis and be administered concurrently with disease-directed, life-prolonging therapies, with a shift to palliative care as the primary goal when these therapies are no longer effective or desired (14). The American Society of Clinical Oncology recently published a provisional clinical opinion suggesting combined oncology and palliative care early in the course of patients with metastatic cancer and/or high symptom burden (19).
HOSPICE
Hospice is an essential resource for patients with metastatic cancer as they approach the EOL. Hospice provides comprehensive and compassionate care to patients and their families through an interdisciplinary team (Table 22-4) (20). Most hospice care takes place in the patient’s home, although there are nursing facilities that offer hospice care as well as inpatient hospice facilities. Patients are considered eligible for hospice if the referring physician and the hospice medical director certify that they have a life-limiting illness with an estimated life expectancy of less than 6 months. Additionally, the patient must accept a philosophy of comfort care, forgoing disease-directed therapies unless they provide a specific palliative benefit. A DNR order does not need to be signed at the time of enrollment into hospice. Hospice is reimbursed through the Medicare Hospice Benefit, the Medicaid Hospice Benefit, and the majority of private insurers (20).
TABLE 22-4 HOSPICE SERVICES AND TEAM MEMBERS
Services
Pain and symptom management
24-h telephone access to a clinician
Assistance with personal care needs
Help with errands (e.g., shopping) and light housework
Spiritual support
Companionship for the patient and family
Patient and family education and counseling
Case management and coordination
Advance care planning
Medications and supplies (pertaining to the hospice diagnosis)
Durable medical equipment
Continuous home care only during brief periods of crisis
Respite services (up to 5 d of inpatient care to allow caregivers a break, no limit to the number of respite care episodes)
Inpatient hospice (for treatment of severe symptoms that cannot be managed at home)
Bereavement counseling
Team Members
Physician (hospice physician, patient’s personal physician may also be included)
Nurse
Social worker
Home health aide
Clergy
Bereavement counselor
Speech, physical, and occupational therapists (if needed)
Trained volunteers
Source: From Reference 20.
Families report high levels of satisfaction with hospice (21), and longer hospice stays are associated with better quality of life in patients and less depression in bereaved family members (11, 22). Despite this, only about 42% of people in the United States die while receiving hospice care, and many patients enroll very late in the course of illness with a median length of stay of less than 3 weeks (20). Although this is likely multifactorial in origin, data suggest that patients may enroll in hospice later if their physicians do not discuss hospice, or if these discussions take place in the last few weeks of a patient’s life (23, 24). Therefore, it is important for the clinician to initiate a hospice discussion with patients who may benefit from such services. This may be loosely defined by the eligibility criteria, but it may be more helpful to consider specific triggers for earlier hospice discussions (Table 22-5) (6, 25, 26).
TABLE 22-5 TRIGGERS FOR EARLY HOSPICE DISCUSSIONS
Change in clinical status
Decline in performance status
Progressive disease
Complication of treatment
Hospitalization
Patient’s goals reflect a desire to focus on palliation
BRIDGE PROGRAMS
Bridge programs provide many of the services offered by hospice, but eligibility is not limited by a prognosis of less than 6 months or an agreement to forgo life-prolonging therapies. It is important to note that patients do have to meet the criteria for home health care (i.e., homebound with a skilled need), which may be a significant barrier to enrollment in a bridge program. Patients who are receiving bridge program services benefit from a team that is specialized in providing palliative home care, while also undergoing disease-directed therapy. These programs also provide a smooth transition to hospice if the patient chooses to defer additional life-prolonging therapies.
ACKNOWLEDGMENT
This work was supported by R25CA092203 from the National Cancer Institute at the National Institutes of Health.
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