Helping Patients with Serious Illness Live Well through the Promotion of Adaptive Coping: A Report from the Improving Outpatient Palliative Care (IPAL-OP) Initiative

Abstract

Continuity outpatient palliative care practice is characterized by long relationships between patients, families, and palliative care clinicians and by periods of relative stability when the disease and resultant symptoms are less active. Compared to inpatient palliative care, outpatient practice requires a greater focus on encouraging healthy coping and on helping patients to live well with serious illness. This paper discusses the opportunities to promote adaptive coping in the delivery of outpatient palliative care.

Introduction

Palliative care is expanding across outpatient care settings.¹ Outpatient palliative care is accepted by patients,² reduces symptom burden, improves quality of life,^3,4 increases patient satisfaction, decreases health care costs,⁵ and may even prolong survival.⁶ As a result, outpatient palliative care is now an essential component of comprehensive palliative care services.⁷

Both inpatient and outpatient practice include symptom management, psychosocial-spiritual assessment, goal setting, and transition management. However, compared to the relatively brief and acute palliative care available in the inpatient setting, outpatient palliative care can provide continuity of care and offer long relationships between patients, families, and clinicians. Inpatient physician-patient relationships usually last days to weeks and often focus on major crises (e.g., cancer progression, multiorgan failure). Outpatients may be followed for months to years and show stability or clinical improvement punctuated with clinical decline and disease progression. Some outpatients experience prolonged stabilization of their disease or even cures. As a result of these differences, outpatient visits often have more time for the palliative care clinician to partner with the patient to devise a plan to “live well” in spite of the serious illness.

This paper explores how clinicians can use a supportive psychotherapeutic model modified to meet the needs of palliative care patients. In this approach the palliative care clinician can take advantage of a longitudinal relationship to support effective coping and adaptation (see Fig. 1).These techniques allow clinicians to engage the patient in cognitive problem solving and also help the patient reflect on effective coping strategies and cultivate positive emotions.

FIG. 1.

Helping patients with serious illness live well.

Prior to discussing methods for helping patients cope and live well it is important to recognize that palliative care clinicians come to these patient encounters with their own values, values that may enhance or diminish the relationship depending on how information is transmitted and received. These values often include the importance of full information disclosure, sharing of prognostic information, life closure activities, and the benefits of hospice. For many patients these values mirror their own and they welcome the resulting discussions. For others these values are contrary to their personal or cultural beliefs and can lead to conflicts and greater patient suffering. Thus it is incumbent on all palliative care clinicians to honor some key principles of palliative care psychosocial support:⁸

1. Develop rapport. Rapport builds quickly when symptoms are well managed and is promoted with basic communication techniques of sitting down, asking open-ended questions, listening carefully, and taking time to learn about the patient's life beyond the illness.

2. Reassess the patient's entire spectrum of needs, not just the clinical, on every visit.

3. Anchor the discussion around the patient's hopes and worries. Titrating discussion according to how the patient is coping helps ensure that the patient is not overwhelmed by information.

The Case

Rick, a 62-year-old male with end-stage chronic obstructive pulmonary disease (COPD), is referred to outpatient palliative care for symptom management. His primary care physician hopes that if the patient can get better control of his dyspnea, he could participate in pulmonary rehabilitation and improve his functional status.

Palliative care clinicians have a unique opportunity to facilitate adaptive patient coping, but this higher-level process can occur only when distressing physical and emotional symptoms are well managed. Research has documented how outpatient palliative care interventions improve dyspnea, anxiety, depression, and insomnia—all leading to improved quality of life.^6,9 With improved symptom control patients feel and function better and are thus in a better position to tolerate disease-modifying treatments. Beyond improving symptoms, referral for symptom management provides an introduction to palliative care services for the reticent patient who is struggling to cope and who may be afraid that palliative care is only associated with end-of-life discussions. In such cases the visit can focus first on symptom management and the clinician can more slowly integrate the emotionally challenging discussions related to disease progression.¹⁰ Lastly, it is when symptom control is optimized that palliative care clinicians can best support effective patient coping; it is the skill of symptom assessment and management that enables the clinician to become an integral member of the patient's care team so that future discussions around sensitive topics can occur.

Rick is started on long-acting morphine and his dyspnea improves, although he remains frustrated by the chronic nature of his symptoms. During his next few clinic visits, his nurse practitioner learns more about how Rick is coping. Rick reports his dyspnea is worse when he is alone, and reflects that this is probably because when he is alone he thinks about how difficult it is to manage. Rick comments that he is hoping to beat his lung disease. His clinician nods quietly after his remark, and Rick continues to talk about his goals for an upcoming summer vacation and then becomes tearful as he talks about spending time with his family. His clinician gently explores his emotions and Rick talks about how much he cares for his family and his worries about how they are going to manage.

Hope, Denial, and Normal Coping Mechanisms

During a serious illness patients and families employ a variety of coping strategies—adaptive, less adaptive, and dysfunctional. Many clinicians, patients, and family members are confused by the normal pattern of coping, where patients oscillate between displaying more and less hope about their future (see Fig. 2).^11–13 Clinicians may interpret seemingly unreasonable hopes (e.g., “I will beat the cancer” or “I believe in miracles”) as denial, which clinicians often mistakenly diagnose as unhealthy coping. By understanding that these statements do not reflect a dense denial but rather an effective coping strategy that defends against a painful reality, clinicians can better support the patient.¹⁴

FIG. 2.

Oscillation between more and less realistic hopes.

Responding truthfully and empathically using open-ended communication is an important way for clinicians to support patients through the oscillations of normal coping. For example, a patient with end-stage congestive heart failure hopes to see his grandchild graduate. By empathizing with the wish for more time, the clinician shares the enjoyment of hope with the patient, without misleading the patient.¹⁵ Aligning with the patient, the clinician might say, “It would be so nice to be able to see your grandchild grow up. I wish that were possible.” It may also be appropriate to remain silent, to not respond to statements of hopefulness, and allow the patient to experience uninterrupted personal expressions of optimism. Helping patients calibrate their hopes and develop an accurate awareness of prognosis should be, when the disease allows, a gentle process.

Helping the patient and family identify the coping strategies that they are using can normalize these behaviors (e.g., “It is normal to want to avoid thinking about your illness”). For example, the clinician can ask the patient to describe what he or she has done in the past to cope with serious problems and what he or she is doing now to manage the stress of the illness (see Table 1).^16,17 The clinician can then help the patient identify and name additional coping behaviors. The clinician might say, “It sounds like one way that you cope is to distract yourself and think about other things.” A patient who primarily uses intellectualization might be encouraged to experiment with a more contemplative approach such as appreciation or mindfulness to gain a deeper sense of their emotional state. Alternatively, patients who are emotionally overwhelmed might be encouraged to use distraction or problem solving to contain or manage strong emotions. When a patient's coping strategies remain rigid despite such interventions, referral to a specialist is indicated. For example, some patients benefit from frequent (e.g., weekly) visits with a cognitive behavioral therapist to reinforce alternative coping strategies; patients with severe anxiety or depression may need additional pharmacologic treatment before they can engage in more flexible coping.

Table 1.

Coping Strategies

What strategies have you used to cope?
Distraction	Do activities to take one's mind off worries.	Watch TV, read, talk with friends, listen to music.
Optimism	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.
Gratitude	Acknowledge benefits that one has received	Express thankfulness to family, friends, or physicians. Appreciate small things.
Joy	Enjoy moments of beauty and excellence.	Watch the sunset. Appreciate a well-played game of basketball.
Meditation	Engage in meditation, relaxation, or spirituality.	Listen to meditation tapes. Do progressive muscle relaxation. Go to church. Take a walk in nature.
Humor	Laugh about the situation.	Make jokes, appreciate the funny or ironic side of life. Help others to laugh.
Flow	Engage in tasks that take one's mind off worries and increase gratification.	Engage in hobbies, play games, do puzzles, engage in work.
Problem solving	Identify problems and generate solutions.	Research treatment options. Make plans for family financial security. Do advance care planning. Engage in legacy work.
Intellectualization	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.

Expanding the patient's coping repertoire enables them to better manage the day-to-day tasks of living. They may then have increased emotional reserve to explore the meaning of their illness and to address challenging emotional tasks such as legacy work, saying good-bye, or making amends. Family coping also influences patient coping, and including family members in some visits may be critical to reduce patient distress and allow emotional expression. Helping patients learn new coping skills, even as they are experiencing loss, sends a message that one can find internal strength and growth opportunities, even with serious illness.

Rick is able to attend some pulmonary rehab sessions; however, he feels exhausted by this therapy and decides to stop. He continues to come regularly to clinic visits. In these visits he can identify that he often uses distraction to take his mind off his uncomfortable breathing but he is unsure what else he does to cope with his illness. His clinician is able to name several other strategies that Rick uses regularly. For example, Rick is an amazing problem solver and has been able to arrange unprecedented home services for himself including 20 hours/day of home-care hours, an electric wheelchair, and a compact portable oxygen tank. Rick is an artist and enjoys painting, an expression of joy and a process through which Rick distracts himself from the physical experience of his illness. He is in flow, fully immersed in a feeling of energized focus, full involvement, and enjoyment in the process of the activity. ¹⁷

Celebrate the Good Times

A growing body of research suggests that positive emotions are not just the opposite of negative emotions, but independent dimensions of mental affect.¹⁸ Positive emotions are typically brief and result from personally meaningful circumstances (e.g., contentment from seeing a friend). Exploring positive emotions elicits positive affect and promotes resilience.¹⁹ In particular, positive emotions quell autonomic arousal, signal safety, and prompt individuals to explore new objects, people, or situations.²⁰ During crisis-free periods the outpatient clinician can encourage patients to recognize and celebrate these times of stability. Eliciting joy and happiness is an important aspect of coping support. Outpatient clinicians can foster positive emotions by asking patients to share stories about their family or important life events, or by discussing specific feelings such as relief, excitement, or happiness that the treatments are working, or feelings of gratitude for support from family or friends.

The Difficult Conversations Can Be a Process over Time

When patients are clinically and emotionally more stable, there is time to acknowledge the bittersweet nature of the good times and to encourage a discussion about the future. By periodically touching on difficult topics, the clinician accomplishes two tasks. First, the patient sees that the clinical time can be an opportunity to talk about difficult topics and that the clinician is not afraid of these issues. Patients and families may then use the clinic visit to discuss difficult topics that they might not approach without the safety and the supervision of an empathic clinician. Second, the patient can safely verbalize their feelings while having control over how much to explore. This process often helps desensitize patients to the experience of exploring difficult topics. With practice and ongoing exposure, patients who struggle to talk about their future may become more comfortable with these conversations—in the office and with family.

Many of Rick's follow-up visits focus on celebrating his relative good health. The opioids enabled Rick to feel more comfortable, and he begins each visit by retelling the story of how poorly he felt before meeting his palliative care clinician, and how much better he now feels. He and his clinician also talk about his family and how much he enjoys visiting his grandson and teaching him to paint.

Rick's palliative care clinician has him complete a health care proxy form and also asks about his preferences for intubation if he were to become sicker. Rick has been asked about his goals for treatment in the past and is certain that he would want everything done to keep living.

Rick talks a lot about his desire to take his son to Disneyland and how this could be accomplished with his illness. In discussions with his palliative care clinician, Rick reflects on why this trip is important to him and realizes that what he really wants is to have some time alone with his grandson. In place of the trip to Disneyland, Rick takes a weekend trip with his grandson to a local beach and feels deeply satisfied by this experience.

Encourage Practical Problem Solving

As we encourage patients to live as fully as possible, we often find that they have to problem solve in an entirely new context. As one patient noted, “I have never died before.” Common problems include how to manage a serious illness on vacation or how to organize help from friends. In such situations a problem solving therapy approach can be a useful clinical tool. In this approach the clinician works with the patient to define a disease-related problem, to establish achievable goals, and to evaluate progress.²¹ This conversation should occur after the clinician understands the patient's values and has determined what is possible medically. While problem solving as a therapeutic modality has not been studied for outpatient palliative care, it is useful in general practice²² and is an efficacious treatment for depressed chronically medically ill elders²³ and for anxiety and depression in patients with early-stage breast cancer.²⁴

Rick's dyspnea and functional status worsen over a period of several months. He has a home BiPAP machine and needs to use it daily to support his breathing. Rick seems to be adapting to his functional limitations, but his clinician wonders if he understands that his disease is now significantly worse and that he may not be able to remain in his home.

Gently Promote Prognostic Awareness: Open the Door to Conversations about the Future

Compared to usual care, more cancer patients assigned to early outpatient palliative care either retained or developed an accurate assessment of their prognosis over time (82.5% versus 59.6%; p=0.02); patients with more accurate prognostic perception were also less likely to receive intravenous chemotherapy at the end of life.²⁵ Other research demonstrated that patients who defined themselves as at peace and aware of their terminal prognosis had better mental health and quality-of-death outcomes, and their surviving caregivers had a better bereavement outcome.²⁶

Despite these benefits, discussing prognosis is challenging as patients struggle with the ambivalence of maintaining a normal day-to-day life. For most patients with chronic noncancer diseases, prognostic discussions can be confusing, because the severity of symptoms and disease progression are not linear.^27,28 Even in cancer, where the last three months of life have a fairly typical downward progression of function, patients commonly struggle with decisions that balance prognostic uncertainly against offers of further treatment with uncertain impact. However, developing a deeper awareness of and ability to tolerate discussions of clinical decline and the possibility of death allows patients to cope more effectively and be more fully informed when making decisions about treatment.^25,29 The information must be titrated to the patient's needs and ability to cope, which requires active participation in the medical and psychosocial aspects of the patient's care. Common phrases to start the conversation include, “What is your sense of what the future holds with this illness?” or “What have your doctors told you to expect in the future?”

An ongoing relationship with palliative care encourages the patient to reduce the cognitive dissonance between his or her wish to be cured and the reality of the need for palliative care services. Regular visits lead to greater acceptance of the involvement of palliative care clinicians, and, in our experience, greater openness to discuss the illness. During stable periods palliative care clinicians help patients think about the future when they encourage discussion of advance care planning, ask about patient concerns, and inquire about family coping.³⁰ Palliative care clinicians can open the door to conversations that allow patients to safely explore their feelings and attitudes towards their illness, treatment options, and personal values.

After prognostic discussions the palliative care clinician should talk with the referring clinician about patient understanding. For example, despite several conversations with his oncologist, a patient with late-stage cancer and no additional antineoplastic treatment options interprets his prognosis to be “a few years” and believes that he has at least two possible treatment options. Reporting this information to the referring oncologist serves three functions. First, it helps the oncologist decide whether the information matches the information the oncologist has already given. Second, if the report is very different from previously discussed information, the oncologist and palliative care clinician can jointly discuss a differential diagnosis for why the patient is struggling and can develop a treatment approach.³¹ Third, by discussing the patient's understanding, the palliative care clinician and oncologist, or other referring clinician, support each other.

Conclusion

The longer relationship and crisis-free periods found in the outpatient setting enables clinicians to use techniques adapted from supportive psychotherapy to help patients cope, adapt, and, at times, thrive. In the setting of a terminal illness, prognostic uncertainty means that physicians must continually balance preparation for death with hopefulness and positive coping for daily living. Further research is needed to quantify these approaches and evaluate their effectiveness. Helping patients live well in the face of serious illness is a skilled therapeutic intervention that not only comforts our patients but promises greater prognostic awareness and more fully informed, shared decision making.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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