◆ The palliative advanced practice registered nurse (APRN) in a palliative care clinic provides continuity of care and symptom management concurrent with disease-modifying treatment that enhances patient satisfaction and reduces healthcare utilization.
◆ The palliative APRN offers collaborative decision support at key points along the disease trajectory to offer patient-centered, preference-sensitive treatment options.
◆ The palliative APRN’s longitudinal relationship with the patient and family, as well as with the other members of the patient’s healthcare team, enhances their coping and fosters resilience.
Eileen O’Henry was a 35-year-old woman with a history of asthma and obesity, status post gastric bypass surgery. She was admitted to the hospital with progressive, severe shortness of breath. She was diagnosed with pulmonary hypertension due to dermatomyositis-associated interstitial lung disease. Six years prior to her diagnosis, Eileen left her position as a bank manager and moved closer to her aged, ailing parents, with her fiancé and his two sons. She was estranged from her two sisters, who both struggled with alcoholism. Over the next 2 years, her mother and then her father died. One year prior to her admission, her fiancé died suddenly after a viral illness, leaving behind his 14- and 11-year-old sons. In the aftermath of that loss, their mother continued the previous custody arrangement, allowing the boys to stay with Eileen every other weekend.
In the first year after her diagnosis, despite treatment for her dermatomyositis, Eileen’s pulmonary hypertension progressed significantly, resulting in cor pulmonale and NYHA functional class III-IV disease. In the setting of chronic steroid use, she gained over 100 pounds, reaching a BMI of 38. She was admitted for initiation of vasodilator therapy (epoprostenol), which resulted in significant headache and muscle/joint pain. During this admission, she learned that she had been denied transplant listing by two different regional heart/lung transplant centers due to her weight. Faced with the progression of her disease and lack of apparent options to treat it, she presented as hopeless and distressed. Her pulmonologist requested a consultation from the inpatient palliative care team to establish a longitudinal relationship for ongoing goals-of-care discussions, pain management, and psychosocial support. For continuity, she was seen by the outpatient APRN during that admission. The consulting palliative APRN then followed her closely in the outpatient clinic along her disease trajectory.
Over the course of the second year of her illness, Eileen was seen monthly by the palliative APRN. Eileen’s severe dyspnea made it difficult to navigate the medical complex, so the APRN traveled to the medical infusion suite to see her during her monthly infusion therapy for dermatomyositis, which it was hoped would stabilize enough to again pursue heart/lung transplantation. A co-management model allowed the palliative APRN to assess and manage Eileen’s pain and symptoms and provide appropriate prescriptions and nonpharmacologic interventions. Eileen suffered from musculoskeletal pain (headache, jaw pain, shoulder aches) due to epoprostenol but was fearful about addiction to opioids given her family history. The palliative APRN provided education regarding opioid misconceptions and counseling regarding coping strategies during her monthly visits. The patient was also followed closely by the palliative care outpatient social worker. Knowledge of community resources on the part of the APRN and the social worker enhanced Eileen’s access to community services and allowed her to stay home longer. Emotionally, Eileen struggled to maintain hope without a certain plan for heart/lung transplant. She told the social worker, “I feel as if I have no past (referencing the death of her fiancé and parents), no future (referencing survival without a transplant) and the present sucks.” Both the palliative APRN and social worker helped to enhance Eileen’s resilience in the face of physical debility and medical uncertainty and supported her in coming to terms with her changing physical abilities as a stepmother.
As she began the third year of her illness, now 37 years old, Eileen suffered increasingly with dyspnea and pain and worsening functional ability. Eileen’s pulmonary, cardiology, and rheumatology teams shared with her that her disease was not responding as they had hoped. A transplant was no longer a possibility. She began to ask theoretical questions about stopping treatment of her pulmonary hypertension, stating, “I don’t think I can do this anymore,” but she was not ready to stop life-prolonging treatments out of concern that her stepsons would think she was a “quitter.”
In response to Eileen’s distress, the palliative APRN organized and led a multidisciplinary outpatient team meeting to discuss Eileen’s goals of care. Eileen and her close friend, along with her primary pulmonologist, cardiologist, and rheumatologist, were in attendance. Eileen described the misery of her home situation and made the request that someone “give me an achievable goal or let me go.” Her subspecialists responded that ongoing therapy of her pulmonary hypertension would only slow the rate of her inevitable decline and death. She then asked what would happen if her epoprostenol was discontinued. She was told that she might die quickly and might suffer significantly worsened dyspnea or chest pain after withdrawal. She was offered the option of admission to the medical center’s cardiology floor for withdrawal of the drug in a monitored setting, with the expectation that she would die, which she accepted. She requested the admission be arranged after one last Christmas with her stepsons, at a time when all of her medical subspecialists, including the palliative APRN, could be present.
When Eileen was ultimately admitted, as requested, the palliative APRN was on call that weekend and her primary cardiologist, pulmonologist, and rheumatologist were also available. Before the epoprostenol was withdrawn, she spent a wonderful day and a half with her close family and dear friend at her side. Each family had an opportunity to say goodbye to her. The palliative social worker assessed how each of the family members was coping and ensured they had adequate supports going forward. The palliative APRN was the primary clinician responsible for Eileen’s comfort medications during the withdrawal process and provided intensive emotional support to the nursing staff through the process. Eileen died peacefully several hours after her epoprostenol was discontinued, with her stepsons, aunt and uncle, and best friend at her side.
Concurrent Care from Diagnosis Onward
The prevalence of inpatient palliative care programs is rapidly rising in the United States. From 2000 to 2011, among hospitals with over 50 beds, the number of palliative care teams increased by more than 150%.1 While hospital-based palliative care has grown substantially over the years, continuity across all settings has been lacking. Outpatient palliative care often extends the impact of an inpatient program “upstream” by providing concurrent care from the time of diagnosis across the illness to end-of-life. The most common model of outpatient clinics has been the academic medical center model of outpatient palliative care clinics as a growth of inpatient palliative care services. However, there are new models emerging from a more community-based perspective. In these settings, palliative care clinics are developing from a breadth of community partnerships, such as hospice, home health agencies, independent practices, and community service agencies.
All along a patient’s disease trajectory, a palliative care clinic can enhance continuity of care, improve symptom management, increase patient satisfaction, and reduce healthcare utilization, particularly at the end-of-life.2 As the above case demonstrates, the initial palliative care consultation was requested during an inpatient admission, but the referring team recognized that this patient needed longitudinal care. The patient, Eileen, had a high symptom burden, poor social support. Her goals were to continue pursuing disease-modifying treatment with the hope of prolonging her life. Her prognosis was poor and she was overwhelmed. Outpatient palliative care clinics are often started as an extension of the inpatient palliative care team to enhance the quality and continuity of care throughout the disease trajectory.3
Palliative APRNs play a pivotal role in the delivery of high-quality palliative care concurrent with disease-modifying treatments. A key component of quality is continuity of care, which is enhanced by a continuous patient–APRN relationship. This promotes the APRN’s ability to provide ongoing assessment and management of pain and symptoms, counseling regarding adjustment to illness, advance care planning, and education regarding the side effects of treatments and medications. Moreover, the palliative APRN is poised, through education and experience, to assess the patient’s emotional history and coping and to provide supportive counseling and screening for spiritual concerns.4,5,6 A recent pilot study, looking at the effects of integrating a palliative APRN into a community oncology center, found that, when compared to usual care, patients were six times less likely to be hospitalized and possibly even lived longer.4 In this study, the palliative APRN was integrated into the care of patients with advanced cancer at the time of diagnosis and followed the patient and family throughout the disease trajectory. This study demonstrates the value of a continuous relationship with a palliative APRN who has specialized knowledge and experience.
The trust that is built by the palliative APRN over time also acts as a foundation for the difficult conversations that will come later in the disease trajectory. A preexisting relationship brings comfort to the patient and family when these conversations are revisited in times of crisis. Since most patients are ambulatory at the time of diagnosis and continue treatments on an outpatient basis, an outpatient palliative care clinic is the ideal place for the APRN to develop such relationships. In addition to improving patient satisfaction and quality of life and decreasing hospital admissions, concurrent palliative care has been proven, in a population of lung cancer patients, to increase survival.7,8,9 Box 13.1 lists the benefits of outpatient palliative care services.10
Adapted from Spragens L, Jones A. Community-based opportunities for extending the palliative care continuum. [Presentation handout]. 2011.
Core Services and Practice Considerations
The first step in building a palliative care clinic is to determine the primary population of patients to be served and the core services to be provided. This focus may be determined by a perceived need within a targeted population or by the expertise of the palliative care APRN. Most palliative care clinics serve patients with serious or life-threatening illness who have one or more of the following needs: complex pain and symptom management, complex medical decision support, assistance with goals of care clarification, assistance with advance care planning, and/or complex social and family dynamics, including substance abuse issues and mental health issues. It is important to determine whether outpatient palliative care services will be provided to a certain disease-specific population, based on a needs assessment that reveals challenges with patient populations, or will be based on pain and symptoms.11
Smith and colleagues,3 in a survey of outpatient palliative care clinics, found that the most common reasons for referral were management of pain and non-pain symptoms, determining goals of care, and support for psychological issues. However, when the survey respondents were asked to rank the services actually provided, they listed determining goals of care first, followed by pain and non-pain symptom management, then social support. The authors suggest that the likely reason for the difference in services requested and those provided is that palliative care team members “uncover” unmet needs. Defining the delivery model and core services is imperative to help guide referral sources and define the mission of the clinic. However, addressing unmet needs is often welcomed by the referring providers and patients and families. Prior to initiating an outpatient clinic, there must be well-defined descriptions of appropriate palliative patients, triggers that may warrant referral, and clear expectations of the services to be provided.
APRNs’ scope of practice may determine their role in a palliative care clinic. Specifically, individual state nurse practice acts and statutes, as well as institutional bylaws, will need to be considered when designing the palliative care clinic. Furthermore, there may be differences between the role of a clinical nurse specialist and a nurse practitioner in state nurse practice acts. Some states may allow autonomy through full independent practice without physician oversight; other states may have more restrictive practice acts requiring physician supervision. Of course, to participate in federal billing and reimbursement, all APRNs will need a collaborating physician. Another important aspect of a palliative care clinic is prescription medications. There is state variation on prescriptive authority, with some states more progressive than others.12 The APRN in a more restrictive state will need to develop a plan for prescription writing.
Despite these differences by state, the palliative APRN can function at the highest scope of practice and provide advanced knowledge of the physical, emotional, social, and spiritual needs of seriously ill patients. Moreover, APRNs institute comprehensive care and provide communication to healthcare providers. In states where APRNs have full independent practice, collaborative practice with physician colleagues is still an important consideration for palliative care. Indeed, for optimizing the management of patients who need highly complex symptom management, a physician colleague can co-manage patients to assist with problem solving and decision making.
The shortage of board-certified hospice and palliative medicine physicians should not be a barrier to finding the right fit with a collaborating physician. If the palliative APRN is providing palliative care services to primarily heart failure or oncology patients, he or she may choose to collaborate with a cardiologist or an oncologist. A non-hospice and palliative medicine collaborating physician provides expertise in complex diagnostic and specific disease management issues that may arise, while the palliative APRN provides expertise on the assessment and treatment of symptoms and offers psychosocial and spiritual counseling as well as coordination of care.
Models of Outpatient Palliative Care Clinics
Across the United States, a wide variety of models are used to deliver outpatient palliative care services, ranging from outpatient clinics to home and nursing home visits. Once the scope of services is determined, the setting for the care can easily be identified. New models are emerging in the growth of community-based outpatient palliative care clinics. Three current models have been identified for a palliative care clinic: embedded, standalone, and co-located13 (Table 13.1).
Table 13.1 Models of Palliative Care Clinics
Unique clinic operation. Overhead and support likely to be in a distinct cost center.
Sublet or subsidized tenant, with possible shared services, but independent patient populations
Service extension of an existing clinic, with shared or designated space
Source of Patients
Independent, but may reflect higher mix from “host” clinic
Dependent; a subset of the “host” specialty; may also allow other patients to be served
Full cost center with provider staff + support + rent & operating expenses
Mixed options; often some overhead & support may be “in kind” or subsidized by “host” or system
Most support provided by “host” clinic.
Used with permission: Barbour LT, Cohen SE, Jackson V, et al. Getting started: The outpatient palliative care clinic. A technical assistance monograph from the IPAL-OP project. 2012. Available at http://ipal.capc.org/downloads/the-outpatient-palliative-care-clinic.pdf. Accessed September 12, 2014.
The embedded model is often used to start a palliative care clinic. Several successful and innovative embedded models have been described that use a palliative APRN as the core team member.4,5,14,15 Embedding a palliative APRN in an outpatient clinic has been associated with measurable benefits, such as improved symptom management, decreased emergency department visits and hospital admissions, and possibly a decrease in mortality rate.4,5
In the embedded model, palliative care is available as standard treatment for any patient with a life-limiting illness in the clinic. This patient-centered approach allows the palliative APRN to get a “foot in the door” with reluctant referrers and patients, decreasing the perception that palliative care is only for the imminently dying. Fairly quickly, referrers note the benefits of being supported in the arenas of complex symptom management, coordination of care, and complex goals-of-care discussions. Often, in the embedded clinic model, the palliative APRN becomes an informal teacher for other healthcare providers by modeling complex conversations or coaching other providers through these conversations, thus enhancing the care delivered. The embedded clinic model not only enhances the satisfaction of the referrers but can also provide support to the palliative APRN, who, by practicing in collaboration with others, develops specialty-level knowledge of the disease state.
There are several disadvantages of an embedded clinic model centered on lack of control for patient flow issues. The palliative APRN’s schedule is dependent on another clinician’s timeliness, and there is a higher likelihood of unscheduled add-on appointments and a higher number of cancellations. Despite these inefficiencies, embedding an APRN in a clinic is often a cost-effective way to establish credibility and build relationships while slowly increasing referrals, possibly with a goal of developing a sustainable standalone clinic.
The standalone clinic allows for a broader patient population. A palliative care service may only have the funding to provide a full-time APRN in the clinic. Additional team members, such as a chaplain or social worker, may be available for only a percentage of a full-time equivalent position or may be supported fully by the institution at large. Palliative care physicians may also see patients in tandem with the palliative APRN or may just consult on occasion. In a standalone clinic, the palliative APRN becomes an important consultant. Patients and families will see the added value of the palliative APRN separate from their oncologist or pulmonologist.
Some palliative care clinics are co-located in a cancer clinic or an HIV or congestive heart failure clinic. The advantage to the host clinic is quick and easy access to the palliative APRN and other palliative care team members. This model may save costs for the palliative care service in terms of overhead and allow more incremental growth.13
Outpatient palliative care services can also be provided as a combination of embedded and standalone clinics. In institutions with close proximity among specialty outpatient clinics, palliative APRNs can float to multiple different clinics in the same day. An example might include seeing his or her own panel of patients in a standalone clinic, traveling to see others in the oncology infusion suite, and then joining a heart failure clinician for a joint visit. Advantages include in-time coordination and collaboration of care, allowing those patients who have long days with infusions or have a harder time getting from place to place to have palliative care services come to them. This approach has the value of being extremely patient-centered by going to where the patient is, but it can be inefficient, as the palliative APRN loses valuable documentation time while in transit between clinics. The palliative APRN is again at the discretion of another clinic’s schedule changes or appointment delays. For certain populations, however, having the palliative APRN travel to the patient is indispensable. Some instances include the reluctant or fearful patient who might not be willing to come to a standalone clinic visit, or a patient with complex chronic illness who does not yet understand the role that palliative care can play in his or her care.
No matter what the type of palliative care clinic, there may come a time when it is difficult for a patient to travel to a clinic. In these situations, the APRN must have knowledge about community resources to ease the transition of care to the home. Home palliative care services may include hospice when appropriate or desired; home health when the homebound criteria are met and/or the patient declines hospice; and home palliative care from either hospice or independent providers. See Chapter 19, The Palliative Advanced Practice Registered Nurse in the Home Setting, and Chapter 17, The Palliative Advanced Practice Registered Nurse within a Hospice Organization.
Role of Other Team Members
Other team members may be embedded in the palliative care clinic or may require referral, notably social work and chaplaincy. In addition to providing in-depth counseling and support, social workers can help patients to complete advance directive forms and assist with finding resources for those with financial, insurance, or transportation needs. If a social worker and chaplain are not fully dedicated to a palliative care clinic, a plan must be in place for timely referrals. Early joint visits with the chaplain or social worker can facilitate rapport, allowing for subsequent visits to be completed separately from the palliative APRN. Ideally, the palliative APRN will have institutional or local access to nutrition services, rehabilitative therapies, such as physical therapy, occupational therapy, and speech and language pathology, chronic pain management (if not covered by the palliative APRN), child life specialists, and grief counseling for their patients.
A variety of funding sources are generally necessary to run a palliative care clinic. APRN billing and reimbursement will vary depending on whether a clinic is an independent practice, a hospital-owned clinic, or part of another entity. See Chapter 4, Reimbursement for the Palliative Advanced Practice Registered Nurse, for details on billing and coding issues. Typically, given low rates of reimbursement and relatively low clinic appointment volumes, billing revenues do not cover the full cost of an outpatient clinic practice and at least one other source of funding will be needed. In a survey of 20 outpatient palliative care practices, funding sources varied among the programs, but the most common was a combination of institutional support and billing revenues.3 Commonly, justification for a palliative APRN may include cost avoidance through decreased hospital admissions, decreased emergency department visits, decreased lengths of stay, and early admission to hospice. This cost avoidance may translate into financial support from the institution at large. Embedding an APRN in an oncology or primary care clinic has shown such cost avoidance through decreased healthcare utilization.4,5 Philanthropy, research, and private foundation support are also common funding sources. Funding will be required for staff (medical and nonmedical), overhead (space and supplies), billing, budgeting and information systems, and tracking of outcomes.11
Launching the Palliative Care Clinic
Establishing Visit Times
Once a model is chosen for the palliative care clinic, funding has been located, and a staffing plan has been identified, decisions should be made about clinic flow and practice, in particular establishing visit times. Visit times may need to be longer to accommodate travel time, lack of support staff, and documentation time. A recent survey of 20 outpatient palliative care programs showed that new consultation times were 40 to 120 minutes, with an average of 65 minutes, and follow-up visit times were 20 to 90 minutes, with an average of 37 minutes.3 In one oncology-embedded APRN-run palliative care clinic, the initial visits are scheduled for 90 minutes.14 In general, a good rule is to begin with 90 minutes for a new patient or new consultation and 45 minutes for a follow-up visit, unless more time is needed to travel from clinic to clinic. These appointment times provide a cushion for those days when a follow-up patient may have complex issues and extensive care coordination is needed. Clinic times may be adjusted on a case-by-case basis or shortened if needed to accommodate same-day appointments.
Referrals and Scheduling
Referrals can come from many sources, such as registered nurses, physician’s assistants, physicians, social workers, rehabilitation therapists (physical therapy or occupational therapy), chaplains, other APRNs, or patient and family self-referral. Scheduling guidelines, developed by the palliative care team members, should be established prior to the startup of the palliative care clinic. Screening for inappropriate referrals should be outlined within these guidelines. In some practices, screening questions can be used by the scheduling secretary: the reason for the consult and the urgency.11 These questions, as well as self-referrals, may trigger the palliative APRN to interview the patient or referring provider about the appropriateness of the consultation. Some self-referred patients may not have a serious, life-limiting illness but are looking for a new opioid prescriber or may be asking for patient care coordination that would be better provided by their primary care provider’s team.
As a way of building clinic volumes or to reach a specific high-needs population, outpatient palliative care clinics can be part of disease-specific or algorithm-driven triggered consultations. Scheduling pathways can then be developed for automatic referrals in these groups. As an example, an automatic palliative care consultation could be scheduled for patients with newly diagnosed stage IIIB or stage IV lung cancers, pancreatic cancer, New York Heart Association (NYHA) stage III or IV heart failure, advanced chronic obstructive pulmonary disease, or amyotrophic lateral sclerosis. Automatic referrals require close collaboration with the specialty group. These automatic referrals not only make palliative care consultation part of the routine care provided by the specialty group but also decrease the perception that palliative care is only for patients at the very end-of-life.
Patient Care Responsibilities
The palliative APRN should explicitly communicate with referring clinicians about role expectations. The role may vary on a case-by-case basis, ranging from consultation only to co-management and even sometimes assuming primary responsibility for the patient.11
Co-management is an ideal model for providing specialty palliative care for patients with serious illness. These patients have intense needs, and a co-management approach allows team members to lean on each other along the disease trajectory to off-load work and support each other emotionally, decreasing the risk of burnout. This collaboration also avoids a “handoff” when the patient’s care needs tip toward a more palliative focus, away from disease-modifying therapies. This integrated, co-management model prevents the patient from feeling abandoned and enhances the concept that palliative care is an “extra layer of support” that is offered to many patients at the time of diagnosis.16
Other providers may request consultation for a specific issue only (such as pain management) or for the palliative APRN to take over full care of the patient. Consultation-only requests that require the referring provider to implement recommendations may not improve symptom control outcomes.8 The embedded model is the ideal setting for a consultation-only role as the APRN can work closely with the referring provider to guide the implementation of the recommendations. Assuming sole care for a patient can be time-intensive for the palliative APRN. However, it may be appropriate for a patient who has no primary care provider and is no longer receiving disease-modifying treatment or is referred to hospice care without a primary care provider.13 Defining these roles up front, at the time of consultation, not only helps the patient clarify whom to call with specific issues but also improves collaboration between team members, ultimately benefiting the patient and increasing satisfaction among all team members.
The Initial Outpatient Consultation
Prior to the visit, the APRN should gain a comprehensive understanding of the patient’s medical history, likely prognosis, and disease trajectory through chart review and discussion with primary specialists and/or the primary care provider. See Chapter 38 for a guide to introducing palliative care to the patient and family in the initial visit. The underlying goal of the initial visit is to introduce the patient and family to the role of palliative care to establish rapport and to screen for and address the most pressing needs, whether those are physical symptoms, emotional distress, or decision-making support.
During the initial visit, the palliative APRN performs a comprehensive assessment of symptoms using tools like the Edmonton Symptom Assessment System or the Memorial Symptom Assessment Scale, with a focus on pain and physical symptoms and psychological symptoms, such as depression and anxiety. The APRN may also need to institute pain interventions and initiate opioid prescribing agreements and guidelines. The APRN should also assess, to the extent possible, the patient’s and family’s understanding of the illness and prognostic awareness, mentally bookmarking areas of significant disconnect between what the patient believes and what chart review has revealed. In addition, it is useful to know about any particular information or decision-making preferences.17 Chapter 39, Advance Care Planning, can assist the APRN in counseling regarding end-of-life preferences and the timing of such conversations. The palliative APRN should perform a social assessment to determine the patient’s and family’s coping strengths and deficiencies.
After the initial consultation, the palliative APRN can identify longitudinal goals for addressing the identified areas of need and can suggest a frequency of follow-up visits. For example, if a patient is emotionally resilient, fully understands his or her disease trajectory and prognosis, and has no symptom issues, the palliative APRN might offer to see the patient every 1 to 2 months, in conjunction with surveillance, restaging diagnostics, or visits with the primary specialist. If, however, the palliative APRN identifies a number of areas of need, or there is a high likelihood that symptom burden may change rapidly due to beginning new disease-directed therapies (chemotherapy or radiation), the patient might need to be seen as soon as a few days or a week following the consult.
Above all, the palliative APRN should set realistic expectations for herself or himself in an initial consultation to avoid forcing an agenda upon the patient and family members, potentially alienating them. The philosophy of promoting quality of life, maximizing functional status, optimizing psychosocial coping, and assisting with care management can guide care and help the patient and family understand the support of palliative care. If the patient/family is willing to return, the palliative APRN has succeeded and the work can continue. Box 13.2 lists unique components of the initial consultation note.
Subsequent Outpatient Visits
Depending on the disease type and trajectory, the middle phase of outpatient palliative care work may last weeks, months, or even years. During this time, in addition to ongoing symptom management as indicated, the palliative APRN should work on fostering resilience and developing prognostic awareness in the patient and caregivers.18,19 This work increases the patient’s tolerance for difficult discussions and lays a foundation of trust in the relationship for the later, challenging work of end-of-life decision making. The APRN should partner with the patient in celebrating the happy moments and solving problems through the tough times, effectively banking a store of goodwill in the relationship that increases the patient’s willingness to engage in less comfortable conversations when they are needed.
Once patients and families can rely upon adequate coping skills and have appropriate prognostic awareness, they have the emotional energy to participate in legacy work: preparing for leave-taking. For those patients with adequate coping and strong familial and financial supports at diagnosis, this work may be engaged in much earlier, but for some particularly challenged patients or family members, the capacity may never evolve.20
In the initial consultation, or early in the course of the relationship, the APRN should inquire about, explicitly name, and validate the patient’s existing and past coping strategies and assess how well they worked in the past and are working now. If past strategies are no longer effective, offer alternatives and offer to brainstorm how new behaviors might work for the patient.18 Table 13.2 lists different coping strategies patients might employ. The palliative APRN relies on his or her ability to synthesize the coping history, prognosis, and emotional response to the illness in order to reflect core strengths back to the patient. This approach will not only foster resiliency in the patient but strengthen the patient–APRN relationship.
Table 13.2 Sample Coping Behaviors and Examples
Do activities to take one’s mind off worries.
Watch TV, read, talk with friends, listen to music.
Stay positive about the future. Try to have times when one almost forgets about the cancer.
Think about future possibilities. Make plans for the future. Hope for good things.
Acknowledge benefits that one has received.
Express thankfulness to family, friends, or physicians. Appreciate small things.
Enjoy moments of beauty and excellence.
Watch the sunset. Appreciate a well-played game of basketball.
Engage in meditation, relaxation, or spirituality.
Listen to meditation tapes. Do progressive muscle relaxation. Go to church. Take a walk in nature.
Laugh about the situation.
Make jokes, appreciate the funny or ironic side of life. Help others to laugh.
Engage in tasks that take one’s mind off worries and increase gratification.
Engage in hobbies, play games, do puzzles, engage in work.
Identify problems and generate solutions.
Research treatment options. Make plans for family financial security. Do advance care planning. Engage in legacy work.
Think about abstract ideas and avoid focusing on emotions.
Contemplate the meaning of life or death. Read about the illness and discuss details with family or physicians.
Used with permission from Jacobsen J, Kvale E, Rabow M, et al. Helping patients with serious illness live well through the promotion of adaptive coping: A Report from the Improving Outpatient Palliative Care (IPAL-OP) initiative.
In addition to identifying existing coping styles and developing new ones, the palliative APRN should foster the experience of positive emotion. Experiencing positive emotions minimizes the autonomic sympathetic fear response, increasing a patient’s sense of safety and willingness to try new behaviors.21 When patients report happy events, the APRN should celebrate those moments with them, and at other times, help them to recognize and enjoy those things they are grateful for.
Finally, the palliative APRN should strategically interpose challenging conversations or difficult encounters with more lighthearted interludes or matter-of-fact visits. This careful titration of discomfort is critical to avoid overwhelming the patient’s and family’s ability to cope and fosters the resilience needed to engage in the next difficult conversation to come.
Identification of High Emotional Distress
One challenge is handling patients who struggle to adapt to these circumstances and require more in-depth services. The palliative APRN should identify the patient with high emotional distress when they are first screened in palliative care and enlist the help of a skilled social worker or other counselor to engage more intensively in counseling around coping strategies. Box 13.3 lists a number of “red flag” characteristics that should prompt referral to a social worker or other clinician skilled in problem-solving therapies or cognitive-behavioral therapy.22
Adapted from Weisman AD, Worden JW. The existential plight in cancer: Significance of the first 100 days. International Journal of Psychiatry in Medicine. 1977.
A common reason for referral is concern that the patient is in “denial.” In the face of life-threatening illness, patients cope by avoiding their painful new reality as a way of preserving psychological equanimity. Denial is adaptive until proven otherwise, and the palliative APRN should not seek to correct the denial by forcing the patient to discuss topics that are clearly causing discomfort. The palliative APRN in the clinic is afforded multiple visits over time to support a patient’s transition from denial to adaptive acceptance.
Deepening Prognostic Awareness
Most patients experience an acute stress response driven by a nervous system sympathetic discharge when they are first told they have a life-limiting illness. For many patients, this sympathetic response overloads their cognitive capacities and much of what they are subsequently told may be heard but not comprehended. Over time, the majority of patients pass through this sympathetically charged, fear-driven stage and into a cognitively intact phase in which they have achieved an accurate understanding of their prognosis. Having this awareness facilitates goal-directed medical decision making, as when discontinuing chemotherapy prior to enrolling in hospice, or when electing not to pursue an implanted defibrillator in NYHA class IV heart failure.23
The minority of patients who struggle with this comprehension phase should be referred to a palliative care clinic to assist with improving prognostic awareness and establishing a relationship for future decision support. With the combination of education and experience in compassionate nursing care and expertise in symptom management, the APRN is well prepared to address “a patient’s capacity to understand his or her prognosis and the likely illness trajectory” (prognostic awareness).14 When palliative care has been involved early in the course of the disease, or when the patient has a slowly progressive disease, the palliative APRN has time to work on fostering resilience, as described above. The APRN can intermittently test the patient’s tolerance for discussions of prognosis by asking him or her to imagine worse health states, making use of a “hope for the best, prepare for the worst” framework: “I’m really hopeful that this new chemotherapy regimen will do the trick, and I also wonder, though, if we should plan for what you might do if it doesn’t.”
When the patient’s disease progresses rapidly, or when he or she is referred late to palliative care, the patient may be faced with decisions that depend upon adequate prognostic understanding, even if he or she is not there yet. The palliative APRN should consider “naming the dilemma” as a way of aligning with the patient, but ensuring the conversation is opened. “I can tell that talking about a time when your cancer is worse is really hard to do and I wish we didn’t have to, but I worry that if we don’t we won’t be able to make good decisions together. Can you help me think about a way to discuss this that would feel OK to you?”19
Supporting the Resilience of Referring Clinicians
Palliative APRNs are well positioned to support their referring colleagues and reduce the risk of compassion fatigue and burnout. The palliative APRN can lighten the referring APRN’s or physician’s workload and time pressures by handling intensive symptom management or by exploring goals and preferences.24 As a co-manager of complex cases, the palliative APRN serves as a mentor for difficult communication and the palliative care team-at-large acts as a supportive community for other APRNs and physicians. The palliative APRN can also support the resiliency of other referring APRNs through relationship building that fosters informal discussions of complex cases, which may lead to requests for formal case reviews. Providing shadowing experiences for new APRNs during orientation can also bolster APRN colleagues’ confidence in discussing palliative care services with patients and their families.
Comprehensive, Coordinated, Continuous Care
An important aspect of quality palliative care is to provide a coordinated assessment and continuity of care along the disease trajectory. The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care discuss domains of quality that form the basis of practice. Under Domain 1, Structure and Processes of Care, there is an emphasis on coordinated assessment and continuity of care across all healthcare settings.25 Patients may have complex pain or symptoms requiring frequent medication adjustments and education; they may have multiple specialists involved in their care and experience increased vulnerability during transitions of care. The palliative APRN is well-suited to address this challenge and provide continuity of care.
A skilled coordinating registered nurse is a critical support to the APRN. This registered nurse is primarily responsible for phone triage, ensuring that patients’ symptoms are managed and psychosocial needs are met in a timely manner in between visits. The nurse also communicates with patients’ other providers and helps to coordinate hospital admissions. The registered nurse acts to “extend” the reach of the APRN, handling basic symptom assessment and management (such as bowel medication titration), using appropriate guidelines to allow him or her to practice within his or her professional nursing scope of practice. When patients are undergoing dose titration of pain medications or require close monitoring for other reasons, the coordinating nurse can make routine phone calls to check in with the patient, ensuring that the correct protocol is followed and optimal results are achieved. Because this registered nurse acts as the “right hand” of the APRN, he or she should be located in the clinic to ensure optimal communication and collaboration with the APRN or physician he or she is working with that day. Depending on workload, he or she may also assist with checking patients in before visits, reconciling medications, assessing and evaluating the effectiveness of interventions, monitoring for adverse effects of medications, and screening for new symptoms or problems.
Another important aspect of providing coordinated care and continuity of care is through the interdisciplinary meeting. The expectation for an inpatient palliative care staff is similar to that for outpatient palliative care staff: the need to meet at least weekly to discuss patients and to review new consults and particularly challenging situations. This ensures that the palliative care roles are defined, that handoffs through transition of care are thorough, and that care goals are in alignment. This meeting also provides support to clinicians in the ongoing clinical care.
When providing quality palliative care in the outpatient setting, access to a specialty palliative care provider should be available 24 hours a day, 7 days a week. This service is helpful not only for patients who have active symptoms but also for referring providers who may need phone consultation about a complex symptom management situation. This is especially important when the palliative APRN dispenses prescriptions to enable follow-up care.
Approaching End-of-Life: Late Work
As a patient’s life approaches its close, the palliative APRN partners with other clinicians and discusses the perceived benefits and burdens of further disease-directed therapy. This discussion may trigger awareness that the patient’s goals need further clarification. Chapter 40, Family Meetings, offers a thorough review of conducting these discussions. In general, a goals-of-care discussion must be informed by the patient’s values and goals and the medically available and/or appropriate treatment options that will meet those goals.
Most patients choose to continue disease-directed therapy as long as they perceive the treatment as beneficial (i.e., it is helping them to meet their goals) and not significantly limiting their quality of life. When a patient’s scales tip such that the benefit is outweighed by the burdens, it is often the palliative APRN who learns, through the longitudinal relationship developed in the clinic, that a transition to purely palliative therapies is needed. Some patients may be perceived by their primary specialists as desiring inappropriately aggressive care. Palliative APRNs can elucidate the reasons for these choices: in one typical scenario, a patient is willing to temporarily accept an otherwise unacceptably low quality of life in order to meet certain goals, such as living long enough to be present for a major life event, like the birth of a grandchild. By sharing these motivations with the treatment team(s), the palliative APRN can ease some of the moral distress experienced by clinicians who worry the patient “just doesn’t get it.”
Increasingly, palliative APRNs are incorporated into the care team of patients with multiple chronic illnesses and multiple specialty providers. The palliative APRN is well-positioned to arrange and facilitate multidisciplinary meetings in the outpatient setting. The palliative APRN serves to translate medical information to the patient and family and helps to elicit the patient’s goals, which are reflected back to the medical team. The benefits to patients are clear, given the often fragmented care and communication they experience because they have multiple specialists.
In addition to supporting patients through the transition to end-of-life care, the palliative APRN is in an optimal position to support the patient’s primary provider, who may be struggling with anticipatory grief at the thought of losing a patient or guilt that he or she could not cure or forestall the disease’s progression. The palliative APRN helps team members to cope through debriefing conversations that allow for expression of emotions and for thorough discussion of the patient’s goals and preferences. Knowledge and acceptance of the patient’s goals facilitate adaptive coping in the provider.
Referrals to Hospice
The rapport and trust developed over time in the longitudinal relationship described in this chapter becomes the foundation for emotionally charged discussions closer to the end-of-life. Helping a patient and family make the transition to hospice is one of those complex conversations. In addition to skill in communicating empathically, the palliative APRN should have a thorough understanding of hospice eligibility criteria for the patient’s diagnosis and the services provided in the patient’s community. Assuming hospice eligibility criteria are met, a patient should be referred to hospice once he or she is no longer receiving disease-modifying therapy or when coming back and forth to the clinic has become burdensome. At the time of the hospice referral, the palliative APRN should review the patient’s medication list to identify medications that might not be covered on hospice and suggest alternatives, and should prepare for crisis events in the home by prescribing medications for crescendo pain, dyspnea, seizures, or agitation.
Prior to making a hospice referral, the palliative APRN should identify which provider will oversee the patient’s care once on hospice. To promote quality care within the transition, the palliative APRN should be explicit that he or she remains available as a consultant to the hospice medical director and should state whether he or she will serve as the attending physician of record for hospice care. This ongoing consultative relationship helps patients and families feel that they are not being abandoned once a referral to hospice is made and provides expert-level guidance to the clinician managing the patient’s care going forward. It is important that the attending physician of record feel comfortable with the current plan of care and feel prepared to manage any foreseeable complex pain or symptom issues. Carefully communicated handoffs, at the time of hospice referral, are imperative to ensure a smooth transition.
Embedded in the culture of nursing and APRN education are the skills of communication, assessment and management of symptoms, psychosocial and spiritual support, and coordination of care. The palliative APRN in the clinic draws on these skills, improving patient satisfaction and decreasing healthcare utilization. The longitudinal APRN–patient relationship enhances communication with patients and families, thereby improving the ability to offer patient-centered, preference-sensitive treatment options. Palliative APRNs deliver coordinated, comprehensive care that can lessen the burden of illness on patients and families and may improve the resilience of the clinicians who co-manage these patients with the palliative APRN.
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