There is growing evidence that palliative care supports the needs of patients with advanced lung cancer. Early palliative care referral has been shown to improve quality of life, decrease symptom burden, and help patients better understand their illness. However, access to palliative care specialists is limited. All providers caring for patients with lung cancer should be able to manage basic symptoms and engage in routine discussions about goals of care, prognosis, and suffering. By developing primary palliative care skills, more patients, even those with earlier stages of lung cancer, benefit from better symptom management, communication, support, and quality of life.
Key points
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Palliative care needs for patients living with lung cancer are high and distressing including high symptom burden that affects quality of life.
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Early integration of palliative care for patients with advanced lung cancer improves quality of life, symptom management, mood, and caregiver satisfaction with care.
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Physician and patient perceptions about palliative care and limited palliative care workforce are barriers to providing early integrative palliative care to patients with lung cancer.
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Primary palliative care skills should be learned by all providers caring for patients with lung cancer to ensure palliative care needs are met.
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Exploring values and goals of care early on leads to goal-concordant care, improved understanding of prognosis, and improved quality of life near the end of life.
Introduction
Lung cancer treatment options have grown in recent years, and with that comes an era of new hope in living with advanced lung cancer. Although cancer deaths related to lung cancer have decreased, lung cancer remains the number one cause of cancer-related deaths and median survival time is less than 1 year. , Patients with lung cancer also report a high burden of symptoms, including dyspnea, pain, and fatigue, and unmet psychosocial needs.
Palliative care provides care that focuses on improving quality of life by treating symptoms and supporting patients and families through the stress of illness. Referral to palliative care specialists has been shown to improve quality of life for patients with lung cancer. This has led to growing consensus for early palliative care referral for these patients. However, barriers to receiving palliative care referrals do arise, particularly physician and patient perceptions of palliative care, and limited access to palliative care specialists.
This article defines palliative care, explores the role of palliative care for patients with lung cancer, and discusses the benefits of early palliative care referral. It also helps to build primary palliative care skills in symptom management and communication that all clinicians should have, to best treat their patients throughout the course of illness.
Defining palliative care
Palliative care is interdisciplinary care focused on improving quality of life for patients living with serious illness and their families. The Center to Advance Palliative Care defines palliative care as “specialized health care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of an illness, and it is based on need, not prognosis. The goal is to improve quality of life for the patient and the family.” Palliative care grew out of the hospice tradition, and early on was seen as synonymous with end-of-life care. As palliative care has grown, there is increasing recognition that palliative care approaches, such as providing symptom management, integrating psychological and spiritual aspects of care, discussing difficult treatment decisions, and providing support to patients and family, are useful throughout the course of illness.
Delivery of Palliative Care
Palliative care is delivered by oncologists, primary care providers, other specialists, nurses, social workers, or palliative care specialists. Palliative care provided by nonspecialists is known as primary palliative care. Anyone caring for patients with lung cancer should be able to provide basic symptom management, routine discussions about goals of care, and support of patients and families. Specialty palliative care is provided by those who have specialized palliative care training. Specialty palliative care providers work in collaboration with the patient’s oncologist, primary care physician, or other provider. Access to specialty palliative care can come through inpatient consultation, outpatient clinics, or community-based programs that may go to the patient’s home, assisted living facility, or nursing home. Hospice care is specifically for patients nearing the end of life who are seeking a care plan focusing on comfort as primary goal. Hospice is also an insurance benefit in the United States, with strict regulatory requirements that determine eligibility and provide standardization for the care to be provided.
Integrating palliative care into lung cancer care
Over the past decade, there has been growing evidence for the benefits of palliative care for patients with advanced cancer. In 2012, the American Society of Clinic Oncology released a provisional clinical opinion, followed in 2017 by clinical practice guidelines, recommending all patients with advanced cancer or high symptom burden receive integrated palliative care services early in their disease course, and alongside cancer-directed treatment. , Similar clinical practice guidelines have been developed by other oncological societies. These clinical guidelines were developed in response to pivotal studies, several of which focused on patients with lung cancer. In 2010, in what is now considered a landmark study in the field, Temel and colleagues published results of a randomized clinical trial examining the effects of early palliative care integration for patients with metastatic lung cancer. Patients who received palliative care referral at time of diagnosis had improved quality of life, mood, and increased survival, with less use of aggressive medical treatment at the end of life. In 2016, a follow-up study in individuals with advanced lung and gastrointestinal cancer showed similar improvement in quality of life and mood. Intervention patients also reported better coping with prognostic information, and increased end-of-life discussions with their oncologist. Studies of mixed advanced cancer populations have also shown improvement in quality of life, symptom management, decreased resource use, and improved caregiver satisfaction with care with early palliative care referrals. ,
Barriers to Early Integration
Despite growing evidence and clinical guidelines, adoption of early palliative care in oncology has been variable. There are several reasons for this. Although many oncologists perceive palliative care as beneficial and value earlier intervention, , some still see palliative care as end-of-life care. , Providers may also worry that patients will lose hope or become more depressed if palliative care is discussed. Limited training in palliative care and communication also contribute to delayed referrals. Concerns about adding a new provider to a patient’s care team, and tension among providers about roles can also add to uneasiness. , Some oncologists may believe that they should be the ones to provide palliative care. Whether based on perception or reality, this view can influence the action of other care team members. For example, radiation oncologists have reported not wanting to upset the referring medical oncologist by suggesting palliative care referral. However, feedback from oncologists who have engaged in early palliative care integration have been positive. Oncologists believed that palliative care helped to “share the load” in caring for patients with difficult symptoms or complex psychosocial situations, and lead to less abrupt transitions as patients neared the end of life. Review of palliative care consultations done early also shows that initial visits are more focused on rapport building, coping skills, and prognostic awareness, whereas oncologists focused on treatment decisions suggesting a complimentary role between the services.
Patient barriers also exist. Several studies have shown that patients have limited or no knowledge of palliative care. Those with some knowledge tend to think of it as end-of-life care or comfort care leading to avoidance and worries about palliative care. This limited knowledge often comes from what they have been told by other health care providers. , Despite this, patients who eventually receive palliative care rate their overall satisfaction with care as higher and do not report increased anxiety after palliative care involvement. , Providers can help patients become more comfortable with palliative care by providing accurate information. Patients who have a reasonable understanding of palliative care are more likely to be comfortable with referral to palliative care services.
In addition to barriers related to individual characteristics noted previously, there are systemic barriers to early palliative care referral. These include inadequate palliative care resources, especially in the outpatient setting; lack of knowledge about existing palliative care resources; and not having clear referral criteria. , , On a positive note, a 2016 review of the National Cancer Database showed that patients with lung cancer had much higher use of palliative care compared with other cancer types, although overall use was low.
Timing of Early Palliative Care
American Society of Clinical Oncology clinical guidelines recommend referral to interdisciplinary palliative care teams within 8 weeks of initial diagnosis of advanced cancer based on Temel and colleagues’ 2010 study. , However, the current state of the palliative care workforce is unable to accommodate this. There are few studies that have compared different time points for early referrals. Bakitas and colleagues compared outcomes for those referred at time of diagnosis versus 3 months later and found no difference in quality of life, mood, or resource use for patients with advanced cancer, almost half of whom had lung cancer. Without clear guidelines, providers default to waiting until refractory symptoms develop, or conflict in medical decisions or psychosocial stressors become more complex to refer. However, this approach leads to variable referral times, and more often than not, late referrals.
Given the lack of a clearly optimal referral timeframe, and real-world workforce barriers, a middle-ground approach that takes into account stage at diagnosis, symptom burden, and prognosis is recommended. If resources allow, patients with advanced lung cancer should be referred to palliative care within 3 months of diagnosis. This allows for treatment of symptoms as they develop and relationship building that supports more difficult conversations in the future. If referral within 3 months of diagnosis is not possible, then referral should be considered for patients with high symptom burden regardless of prognosis, estimated prognosis of 1 year or less, progression in cancer after first- or second-line therapy, or patients with complex psychosocial situations or stressors.
Because there will likely be a lag between diagnosis and referral to palliative care specialists, primary palliative care skill development is essential. Lung cancer providers should engage in opportunities to build primary palliative care skills and encourage other members of the team to do the same. Oncology practices should standardize symptom assessments and have routine assessments for psychosocial stressors. These are adapted to fit local resources and practice conditions. Referrals to social workers or case managers are made earlier if assessment identifies stressors early on. Likewise, earlier discussions of advance directives and goals of care are supported by oncology nurses, advanced practice practitioners, and even lay health workers. All of these can help to improve goals of care communication, coping, and even caregiver distress when the end of life is near. , With time, integration of standard lung cancer care and palliative care can happen. Ultimately, it should be seen as a collaborative effort to support the patient and family through a disease process and the life stressors that may come with it.
Symptom management for patients with lung cancer
Patients with lung cancer report high symptom burden. Common symptoms in patients with lung cancer include dyspnea, pain, weakness, and loss of appetite. Many of these symptoms are expected to worsen in the last months of life. Untreated, or inadequately treated, symptoms affect a patient’s quality of life, ability to function, and even engagement in treatment. , It is important to routinely assess all patients with lung cancer for symptom burden and severity. The Edmonton Symptom Assessment Scale is a visual analog scale commonly used in palliative care that includes nine symptoms: dyspnea, pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, and other. Ideally, lung cancer providers should know how to evaluate and manage these more common symptoms, especially when mild. Referral to palliative care specialists would then be indicated for moderate to severe symptoms, multiple symptoms, if symptoms are affecting treatment options, or symptoms refractory to primary palliative care treatments. Although in-depth review of management for all possible lung cancer symptoms is not possible in the scope of this review, the following provide guidance on management for two of the most common lung cancer symptoms: dyspnea and pain.
Dyspnea
Dyspnea, or breathlessness, is a common symptom in lung cancer and increases as patients become closer to the end of life. , Dyspnea is the sensation of breathlessness, and is distressing to patients and families. Dyspnea is episodic or persistent. Dyspnea is subjective and may occur in the absence of hypoxemia, tachypnea, or other signs of respiratory distress. , A numeric or visual analog scale, such as the Edmonton Symptom Assessment Scale, should be used routinely to assess for dyspnea. Assessment should start at time of diagnosis. The presence of dyspnea at time of diagnosis is predictive of poorer outcomes and increased mortality at any lung cancer stage. , If dyspnea is reported, further evaluation should include its effect on function and activities of daily living. , Dyspnea may be related to the cancer itself or comorbid lung disease, such as chronic obstructive pulmonary disease, infection, pulmonary embolism, or pleural effusion. It is important to evaluate for underlying causes and treat appropriately. However, dyspnea may persist despite appropriate therapy. For refractory dyspnea, a combination of nonpharmacologic and pharmacologic treatments may be needed.
Nonpharmacologic management of dyspnea
There are several nonpharmacologic approaches to dyspnea management. Supplemental oxygen is an effective treatment of dyspnea caused by hypoxemia. However, studies have shown that for patients near the end of life, supplement oxygen was no better than giving room air for relieving dyspnea, likely because of multifactorial etiologies for dyspnea. , Although supplemental oxygen should be tried, it is important to consider other ways to manage dyspnea, particularly if symptoms are refractory. Proper patient positioning, especially when sleeping, may be helpful. Elevating the head of the bed or the use of a hospital bed may be beneficial, especially in more advance stages. A fan gently blowing air across the face can relieve dyspnea. Therefore, it is reasonable to ask that a fan be placed near where a person sits at home or near their bed. Similarly, a cooler room or even a window open at night may help. The use of high-flow oxygen or noninvasive ventilation in patients with cancer has also shown benefit for relieving dyspnea. , However, use of these treatments may limit the settings in which an individual can receive end-of-life care (eg, noninvasive ventilation may not be available in a patient’s home). Therefore, decisions about using measures that may impact other aspects of palliative care should be made through thoughtful discussion with the patient and family about goals and acceptable outcomes.
Opioids and other medications for dyspnea
Pharmacologic treatments for dyspnea are aimed toward treating a presumed underlying cause or treating the symptom directly. For example, antibiotics for an infection, diuretics for pulmonary edema, or inhalers/nebulizers for underlying lung conditions may all be useful treatments for underlying causes of dyspnea in the appropriate setting. If dyspnea persists despite these measures, or in the absence of a treatable cause, then treating the symptom directly is reasonable. Morphine is considered the first-line treatment of refractory dyspnea. Several studies have shown the benefit of morphine for the relief of air hunger and breathlessness. , Low doses are usually effective in relieving the feeling of breathlessness. If a patient is not on an opioid currently, I recommend starting a low dose of morphine (eg, 5–10 mg by mouth, as needed). Other short-acting opioids should also be beneficial for relief of dyspnea, although studies have mainly looked at the use of morphine. For patients that need opioid treatment on a more regular basis, transitioning to a long-acting opioid may be appropriate. Counseling patients on the use of opioids for dyspnea is important. Many individuals are not aware that it is used in that manner and may have preconceived notions about opioids in general. When counseling patients, I recommend that they time their dosing to when they first notice an increase in shortness of breath. Patients may find that shortness of breath is most bothersome at a specific time (eg, before activity). In this case, I advise them to take a dose before they begin the activity. Morphine is associated with increased drowsiness, but studies do not show an increase in mortality caused by morphine when used to treat dyspnea. , ,
Other medications that are considered in addition to morphine are benzodiazepines and steroids. Dyspnea is often associated with anxiety. Benzodiazepines may be helpful in this setting in combination with morphine. Studies do not support the use of benzodiazepines alone for dyspnea treatment. , Steroids have shown benefit in patients with lymphangitic carcinomatosis and airway obstruction. However, there are only limited data for use of steroids in patients with other reasons for dyspnea. ,
Cancer-related Pain
Pain is common in patients with lung cancer. Studies show that 48% to 92% of patients with lung cancer report pain. , , Pain affects quality of life but is often undertreated. Although patients own concerns about addiction and opioid dependence contribute to limited use, one study showed that nearly three-quarters of patients stated their provider had not recommended medications for pain. Uncontrolled pain is distressing, but cancer-related pain is manageable, and treatment can have secondary effects including improvement in mood, function, and quality of life.
Types of lung cancer pain
Lung cancer pain can often be categorized as nociceptive pain, neuropathic pain, or a combination of the two. Nociceptive pain is related to tissue or bone damage caused by tumor. Nociceptive pain is further differentiated into somatic or visceral pain. Somatic pain is described as sharp and localized. Common locations include the site of the primary tumor (eg, chest wall pain), or areas of where the cancer has spread, such as vertebral bodies in cases with bone metastasis. Visceral pain is described as dull, achy, deep, and less well localized. It may occur if lung cancer has spread to the intestine or other abdominal organs. Nociceptive pain is generally responsive to opioids.
Neuropathic pain is related to nerve damage. Damage to nerves can occur from tumor compression, enlarging lymph nodes, or chemotherapy. It is described as shooting, tingling, or burning pain, and often radiates. Neuropathic pain has a variable response to opioids but can respond well to adjuvant agents. Understanding the type of pain and location of pain is helpful in determining management.
Opioid management for lung cancer pain
The first step in managing pain is to take a thorough history, with a goal of ascertaining the type, location, severity, and acuity of the pain. A pain scale should be used routinely for severity rating. Some patients have a prediagnosis of chronic pain. This may flare with lung cancer diagnosis, progression, or treatment effects. The management of chronic pain is beyond the scope of this paper, but in these cases, collaboration with noncancer providers, particularly those who were managing the patient’s chronic pain, from an early stage is encouraged.
The World Health Organization has developed a three-step ladder for evaluation and management of cancer-related pain. For patients with mild pain (step 1 on the ladder), nonopioid medications, such as acetaminophen or nonsteroidal anti-inflammatory drugs, may be enough. Unfortunately, nearly a third of patients with lung cancer report moderate to severe pain (steps 2 and 3 on the ladder). For these patients, opioids are recommended, especially if the pain is nociceptive. Weak opioids, such as codeine, hydrocodone, and tramadol, are unlikely to be beneficial. , Instead, stronger opioids, such as morphine or oxycodone, should be considered. For patients that are opioid naive, the initial regimen should consist of a short-acting opioid every 4 to 6 hours as needed ( Table 1 ). Choice of opioid should be based on patient factors, such as prior experience with a specific opioid and renal function. If a patient requires regular use of short-acting medication because of constant pain, then initiation of a long-acting opioid is recommended, with continuation of short-acting opioid for breakthrough pain. The goal of pain relief should be to reach a pain level that allows for the person to function and have a good quality of life.
| Initial Doses | Frequency |
|---|---|
| Morphine, 5–15 mg PO Oxycodone, 5–10 mg PO Hydromorphone, 2–4 mg PO | Q 4–6 h as needed |
For some patients, opioid rotation may be necessary. Reasons for opioid rotation may include ongoing pain despite increasing dose or frequency of the current opioid, intolerable side effects of current regimen, or inability to take current regimen. Converting between opioids requires use of an equianalgesic chart ( Table 2 ). See Box 1 for how to convert from one opioid to another.
| Opioid | PO (mg) | IM/IV/Subcutaneous (mg) |
|---|---|---|
| Morphine | 30 | 10 |
| Codeine | 200 | 100 |
| Hydrocodone | 30 | Not available |
| Oxycodone | 20 | Not available |
| Hydromorphone | 7.5 | 1.5 |
Step 1: Calculate 24-hour dose of current drug (total of long-acting and prn doses)
Step 2: Using equianalgesic chart, calculate 24-hour dose of new drug
Step 3: To account for incomplete cross-tolerance, reduce dose by 25%–50%
Step 4: Divide total 24-hour opioid dose by the appropriate number of doses to be given in a day (eg, divide by 2 if the medication will be dosed every 12 hours)
Step 5: Consider what pill strengths/formulations are practically available to determine final long-acting regimen
Step 6: Calculate breakthrough opioid dose: 10%–20% of daily long-acting dose
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