National Cancer Institute NCI Cancer Bulletin: A Trusted Source for Cancer Research News
January 12, 2010 • Volume 7 / Number 1

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A Closer Look

Communications


This is the first article in a new series of stories related to cancer communications. Look for the symbol on the left in an upcoming issue for the next article in the series.

Video Eases End-of-Life Care Discussions

Despite the extraordinary progress made in cancer treatment over the past several decades, the disease remains the second-most common cause of death in the United States. Every year, more than 500,000 people with cancer are confronted with the need to make end-of-life care decisions. These decisions can be complex, not only in terms of the emotional issues but also in terms of the wide range of medical options, which can have different goals.

 'I think what videos allow us to do as physicians is to broach difficult topics in a way that patients can understand what we're talking about.' -Dr. Angelo Volandes

These discussions can be further hampered by poor communication between physicians and patients, and by the fact that patients often have limited understanding of medical terminology. Uninformed decision making can lead to patients choosing end-of-life care that is not in line with their values or with how they picture their last days of life, which in turn can cause distress for them and their loved ones.

“Often when these conversations about end-of-life care are held in the abstract, we’re asking our patients to imagine things that are often unimaginable, and with which they have very little experience,” said Dr. Angelo Volandes, an internal medicine physician at Massachusetts General Hospital. “We want to make sure that patients have all the information required to make an informed decision.”

Viewing Reality

Dr. Volandes and his colleagues from several hospitals in Boston and Pittsburgh are studying what role patient education plays in the types of end-of-life care that are ultimately chosen by patients. Broadly, end-of-life care can be grouped into three categories: life-prolonging care, which includes extreme measures such as cardiopulmonary resuscitation (CPR) and the use of mechanical ventilators; basic medical care, which includes medicines for infections or other treatable problems; and comfort care, which aims to keep patients pain free and relieve their symptoms but does not include life-prolonging treatment or medications for treatable conditions.

Many patients with advanced cancer choose life-prolonging care, in spite of its limited benefits for seriously ill people. (For example, CPR fails in more than 90 percent of people with advanced cancer. And of the less than 10 percent that do survive CPR and mechanical ventilation, most experience medical complications from the procedures.)

“I fear that many people may have been misinformed about the reality of what these medical interventions can provide,” said Dr. Volandes. “I think, when we’re having these conversations, often the words that our patients are using or the images in their mind are more reflective of the media, of television, of the latest episode of Grey’s Anatomy, or other such programs, rather than the clinical reality.”

Recently, the researchers tested whether a video depicting end-of-life treatment options would be better than traditional verbal explanations in helping patients understand the types of medical technology used in end-of-life care. They enrolled 50 patients with malignant glioma into a randomized clinical trial, assigning patients to a verbal explanation group (27 patients) or to a video group (23 patients). Patients in the verbal explanation group listened to a narrative describing the three categories of end-of-life care and the limitations of each type of care. Patients in the video group listened to the same verbal narrative and then watched a 6-minute video that included the same narrative, but matched to visual images of the care being described. The results appear in the January 10 issue of the Journal of Clinical Oncology.

The video included simulations from all three categories of end of life care, including CPR and intubation, administration of intravenous antibiotics, oxygen use, and receipt of pain medication. The appropriateness and accuracy of the simulations were reviewed by 10 oncologists, 3 critical care specialists, 3 palliative care physicians, and 3 medical ethicists, and edits to the script were made as needed.

Each patient’s preference for type of end-of-life care was recorded after exposure to the narrative or the video, as well as their willingness to undergo CPR. The researchers also asked about their understanding of the types of care described and their comfort with the video experience.

Truly Informed Decisions

Participants in the video group reported a larger increase in knowledge of the medical interventions being discussed. “Patients told us ‘I heard you, but I didn’t understand you. But once I saw the pictures, I understood what you meant by those words,’” recounted Dr. Volandes. All of the participants in the video group said they would definitely or probably recommend the video to another cancer patient.

After listening to the verbal narrative, 11 participants said they were willing to undergo CPR and 16 declined. After watching the video, only 2 were willing to undergo CPR and 21 declined.

Among those who only listened to the verbal narrative, 7 people preferred life-prolonging care, 15 preferred basic medical care, and 6 preferred comfort care. After watching the video, no participants preferred life-prolonging care, 1 preferred basic medical care, 21 preferred comfort care, and 1 was unsure of his preference.

Visual Learning

“When you have these difficult conversations with patients, it’s not just about what they want and how they feel—the psychology of this devastating disease,” commented Dr. Ann O’Mara, head of Palliative Care Research in NCI’s Community Oncology and Prevention Trials Research Group. “We have to teach patients because, even at the end of life, there are pieces of knowledge that they need in order to make informed decisions.”

“I think what videos allow us to do as physicians is to broach difficult topics in a way that patients can understand what we’re talking about,” said Dr. Volandes. “We need to adapt to how our patients learn today. We’re a media society. We’re visual learners, and video is one additional means by which we as physicians can educate our patients.”

The researchers are beginning a large multicenter study in 2010 that will test use of the video in a diverse group of patients with different types of cancer, from both rural and urban hospitals.

—Sharon Reynolds

ALSO IN THE NEWS

Doctors Less Likely to Discuss End-of-Life Care Options with Terminally Ill Patients Who Feel Well

To determine whether doctors follow national guidelines to discuss end-of-life issues with patients who have a life expectancy of a year or less, researchers led by Dr. Nancy Keating of the Brigham and Women’s Hospital and Harvard Medical School in Boston surveyed a national sample of 4,074 doctors who care for cancer patients. They found that most did not wish to discuss end-of life issues, such as preferences for resuscitation or where patients would like to die, as long as their patients are feeling well. Instead, they preferred to wait “for onset of symptoms or until there are no more nonpalliative treatments to offer,” wrote the authors. Physicians who felt knowledgeable about discussing end-of-life care options were more likely to review do-not-resuscitate orders, hospice care, and preferred place of death with their patients in the present, rather than waiting to do it. “Education and patient, physician, and institutional interventions may be necessary to increase advance care planning for terminally ill cancer patients,” concluded the authors. The results were published online January 11 in Cancer.

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