Palliative Radiation Medicine

Massachusetts General Hospital Experience

In a landmark paper from the thoracic oncology service at the Massachusetts General Hospital (MGH), Temel et al. randomized 151 patients with metastatic non–small cell lung cancer (NSCLC) to standard oncological care alone or early palliative care integrated with standard oncological care. Patients who were assigned to the experimental arm met with a member of the palliative care team (which consisted of a board-certified palliative care physician and an advanced practice nurse) on a monthly basis until death. The monthly palliative care visits included a rigorous assessment of psychosocial symptoms, establishing goals of care, assisting with decision-making regarding treatment, and coordinating care on the basis of the individual needs of the patient.

The patients assigned to early palliative care had a significant improvement in QOL when compared with those assigned to standard care as manifest by a mean score on the Functional Assessment of Cancer Therapy–Lung (FACT-L) scale of 98.0 versus 91.5 ( p = 0.03). Moreover, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%; p = 0.01). Surprisingly, fewer patients in the palliative care group received aggressive end-of-life care (33% vs. 54%, p = 0.05) and, yet, median survival time was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, p = 0.02).

The authors speculated that the prolongation of life was, in part, attributable to the higher QOL and lower incidence of depression among those patients but acknowledged that the mechanism explaining the benefit of this endpoint required further elucidation. They also surmised that the actual treatment impact of early palliative care may have been greater than reported since patients in the control arm were allowed to cross over and receive consultation from the palliative care team.

Princess Margaret Hospital Experience

Zimmerman et al. used a unique study design to determine whether early palliative care was beneficial for 461 patients suffering from advanced cancer who had a maximal estimated survival of 2 years. The study took place at 24 specialized medical oncology clinics (8 gastrointestinal cancer, 6 breast cancer, 4 lung cancer, 4 genitourinary cancer, 2 gynecological cancer) who were affiliated with the Princess Margaret Hospital (PMH) in Toronto, Ontario, Canada. The randomization between early palliative care intervention and standard cancer care used a cluster-randomized controlled trial (i.e., randomizing clinics rather than individual patients). This approach was used on the basis of evidence attesting to the difficulty of recruiting patients to be individually randomized (or not) to an intervention such as palliative care.

The core intervention was outpatient consultation and follow-up by a palliative care physician and nurse consisting of monthly assessment of symptoms, psychological distress, social supports, and home services. The control group received no formal intervention; however, palliative care referral was never denied.

Although there was not a significant benefit in the primary outcome (change in score of the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being [FACIT-Sp] tool at 3 months) there was a dramatic benefit derived from early palliative intervention at 4 months vis-à-vis measures in QOL, symptom severity, and satisfaction with care. The authors concluded that early palliative care may be beneficial for patients with a wide range of advanced solid tumors.

Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Studies I to III

In the latter part of the 1990s, the Robert Wood Johnson Foundation decided to use philanthropic funds to develop national programs and studies that would enhance end-of-life care. This was called Project ENABLE (Educate, Nurture, Advise, Before Life Ends).

These studies differed in several important ways. In contrast to the aforementioned experiences, these studies were not restricted to one institution, thus lending themselves to greater generalizability of results. The ENABLE studies were stewarded by nurses rather than physicians and focused on not only patients but also caregivers. Last, since many of these patient/caregiver dyads were situated in remote rural communities, ENABLE sought to determine whether telecommunication technology could have an impact on the outcomes studied.

The initial ENABLE trial, launched in 1998, was a “demonstration study” that established the feasibility of integrating palliative care into routine cancer care. The oncology nurses received training as “palliative care coordinators” and thus learned how to reliably collect data with a diversity of instruments, such as the Edmonton Symptom Assessment Scale (ESAS) and Functional Assessment of Cancer Therapy (FACT) tool, at regular intervals. In addition, psychoeducational workshops were developed and targeted for patients and family caregivers. At its core, the demonstration study sought to align patient values and preferences for care. The significant rise in early hospice use during the study period (1998-2001) was a testimony to the success of the latter objective. Although patients and family members were highly receptive to the workshop model, only one-third of patients were able to attend these seminars regularly because they were too ill or lived too far from where the workshops were conducted. Accordingly, the investigators developed telephone coaching sessions for subsequent rounds of studies within Project ENABLE.

ENABLE II was a randomized controlled trial conducted for 322 patients with advanced cancer (gastrointestinal, lung, genitourinary, and breast tumors) in rural regions of New Hampshire and Vermont. The primary intervention consisted of four weekly educational sessions (addressing physical suffering, psychosocial needs and care coordination) that could be administered by nurses via telephone coupled with monthly follow-up sessions until death versus “usual care.” The intervention used a “distress thermometer” to identify sources of anxiety in five areas, including work or school, family problems, emotional problems, physical problems, and spiritual or religious concerns.

Those receiving this nurse-led palliative care intervention had significant improvements in QOL and fewer cases of depressed mood (the primary endpoints of the study) but did not derive benefit in terms of symptom intensity scores and reduced days in the ICU. There was no difference in survival outcomes between the two groups, though there was a trend favoring the group receiving the intervention (median survival time of 14 months vs. 8.5 months). Despite the lack of a statistical impact on survival, the conversion of a direct-contact intervention revolving around workshops to a manualized, telephone-based format illustrated a unique ability to deliver palliative care to rural populations hitherto denied access to the sophisticated programs available at urban academic medical centers. Accordingly, in-person consultation, which was deemed not feasible, may also have been unnecessary. To be sure, the intervention succeeded in educating participants and providing ongoing support to patients until death.

By the time ENABLE III was launched, it was considered unethical to deprive any participants of a palliative intervention. Instead, the study examined the timing of the palliative intervention. This study—which was run at a National Cancer Institute cancer center, a Veterans Affairs Medical Center, and within community outreach clinics—consisted of an in-person palliative care consultation combined with structured telehealth nursing coaching sessions. Patients were randomized to have the palliative intervention at the outset or 3 months later. Surprisingly, the patient-reported outcomes and resource utilization (e.g., extended hospice stay) were not statistically different between the experimental and control groups. Interestingly, the 1-year survival rate (63% vs. 48%; p = 0.038) was significantly improved among those who had early palliative intervention.

As noted, ENABLE III also addressed caregiver issues. It was presumed that this target population would benefit from a palliative intervention; thus, caregivers were, likewise, randomized to early versus delayed palliative care. A total of 122 caregivers were enrolled in the study. Most were women (79%) and white (93%), and the median age was 60 years. The intervention was primarily three structured weekly telephone coaching sessions drawn from the same three sources used for the aforementioned patient component of ENABLE III. The caregivers randomized to the early group had lower depression scores and less “stress burden” at 3 months than those randomized to the delayed intervention.

While the study design can be critiqued because it begs the question of whether caregivers need a palliative care intervention (i.e., in the absence of preexisting data, ENABLE III simply asked a question of “when”), the investigators made an impassioned plea to assume that caregivers would be helped given the well-documented psychological distress as well as the increased mortality risk of this ancillary population. The investigators concluded that palliative care should be implemented as soon as possible to this population as well to maximize benefits.

Assessment of Patients’ Information Needs

As a starting point, it is important to evaluate the patient's understanding of the illness and the patient's understanding of the goals of the treatments being administered. Open-ended questions can be used to evaluate how the patient is coping physically and emotionally. Patients’ information needs vary greatly—a balance must be struck between delivering information necessary for understanding and decision-making and between an “assault of truth,” whereby patients are given more information than they want or desire.

Several studies have shown that a small proportion of people do not want a lot of information. A survey of 126 metastatic cancer patients found that 33% wanted to discuss “dying and palliative care services” when first told cancer had spread; 19% said in the next few consultations; 33% said later, upon (their) request; 11% said never; and 10% were unsure. Almost half wanted the oncologist to initiate the discussion, 20% wanted the oncologist to check first if the patient wanted to know, and 24% wanted the oncologist to address the issue only if the patient asked. For some patients, there will be a “necessary collusion” (alternatively referred to as “mutual pretense”) in which these issues will not be addressed forthrightly but rather with the passage of time and evolution of the disease.

Talking About Prognosis

In these dialogues, it is common for patients to ask questions about prognosis. The motivation underlying queries pertaining to prognosis are not always clear. Whereas many patients want information about their anticipated future so that they can plan accordingly, others are seeking reassurance that things are not so serious or hopeless. It is important to try to understand the patient's motive in seeking this information.

In discussing prognosis, clinicians often describe median survival data or 5-year survival data. Median survival information can be particularly misleading, as it is a point descriptor that does not reflect interindividual variability, which may be great. Similarly, 5-year survival data may not provide adequate information about the true likelihood of survival. If prognostic information is required, the following principles are useful.

• 1.

  Be honest . If you do not know, say so. It may be useful to describe a worst-case and a best-case scenario.

• 2.

  Use averages . “One-third of people will still be doing well a year from now and half will live about six months. However, you are unique and I don't know exactly what course this disease will take.”

• 3.

  Emphasize the limits of predictions . “No one can really be sure what this will mean for you as an individual. We can't predict surprises, and it is wise to make plans for the best but also to cover options if things don't go well.”

• 4.

  Commit to nonabandonment . Reassure patients that you will continue to care for them, whatever happens.

• 5.

  Caution patients and their families that unexpected events can happen . Suggest that it is worthwhile to get their affairs in order so that they will not be totally unprepared if something unexpected does happen.

• 6.

  Avoid nihilism . Never say to a patient “There's nothing more that can be done” or “Do you want everything done?” There is always something to be done to help the patient with life yet to be lived. Discuss what can be done to make it better (and what might make it worse).

• 7.

  Initiate end-of-life planning . Sensitively bring up the important subject of advanced care planning.

Recent studies have demonstrated that prognostic awareness among patients with advanced cancer may be associated with reduced QOL and increased anxiety. This underscores the need for substantial psychological support—and sometimes treatment—of anxiety, depression, or demoralization.

The Oncological Management of Advanced Cancer

The judicious use of disease-modifying treatments can potentially prolong survival and improve comfort and function. As treatment options become more varied, complex, and expensive, the balancing of benefits and burdens in considering these primary treatment options is becoming increasingly challenging, particularly with the advent of new targeted therapies, immunotherapy and with hopes often pinned on biologically personalized therapies.

Decision-making regarding palliative therapies must take into account a range of relevant issues, including goals of care; likelihood of benefit; likelihood of harm; and the desires, beliefs, and understanding of the patient and family. Addressing the relative roles of disease-modifying approaches requires familiarity with key concepts of patient benefit, QOL, and risk/benefit analysis. When the therapeutic index of antitumor therapies is diminished and the likelihood of benefit is outweighed by either the risk or burden of the treatments, radiation oncologists must help steer patients and family to a care program that focuses on symptom management and other efforts to reduce suffering, help coping, maintain QOL, and prepare for the end of life (see later discussion).

Communication With Patients and Family Members

Given the complexity of the goals of care, patient and family expectations, and the range of therapeutic options, communication with patients and their families is a critical element of the radiation oncologist's role in caring for patients with incurable cancer. Communication is challenging; it requires patience and refined interpersonal and counseling skills to facilitate effective, informed decision-making.

A variety of communication tasks usually are undertaken by the radiation oncologist. The diagnosis, prognosis, and treatment options must be explained—this may involve discussions about the potential risks and benefits of treatment options, the role of palliative care, and the necessity for discontinuing antitumor therapies when appropriate. These tasks demand the skills to deal with intense emotions, highly distressed patients, and family members with fears, anger, and anticipatory grief.

Strategies such as communication training for oncologists, patient prompt lists, and patient education resources can be used as tools to facilitate more effective communication around these vital issues.

Management of the Complications of Cancer and Radiotherapies

Radiation oncologists must be experts in the evaluation and management of the complications of cancer and, in particular, the acute and delayed adverse effects of radiotherapies. This expertise should include approaches to minimize adverse effects, the evaluation and management of the acute adverse effects of radiotherapy, and approaches to the management of delayed adverse effects.

Evaluation and Management of Physical, Psychosocial, and Spiritual Disturbances

Patients with advanced cancer commonly have multiple symptoms and other sources of suffering. To address their needs, radiation oncologists must be experts in the evaluation and management of the common physical symptoms, including pain, dyspnea and cough, fatigue, nausea and vomiting, constipation, diarrhea, insomnia, and itch. In addition, psychological and existential distress is common; oncologists must be prepared to assess and help manage the varied sources of these concerns.

The informational and emotional needs of cancer patients are commonly underestimated. Depression, in particular, is often undetected or undertreated. Consequently, radiation oncologists should be familiar with the assessment of common psychological problems, such as anxiety, depression, delirium, suicidality and desire for death, death anxiety, and anticipatory grief. Where possible, they should be familiar with anxiolytic and antidepressant pharmacotherapy and should work closely with mental health clinicians to help address these issues.