Emotional Needs an Important Part of Cancer Care

The National Cancer Institute says 15% to 25% of patients with cancer suffer depression. Others suffer from varying levels of stress and anxiety about health, financial, and other concerns. Lori Johnson, RN, BSN, OCN, with UC San Diego Moores Cancer Center in California, conducted a pilot study to assess distress management of patients with cancer treated at her facility’s ambulatory clinic. Johnson said she became interested in doing the study after becoming involved in the American Society of Clinical Oncology’s Quality Oncology Practice Initiative, a Web-based program that assesses participating clinics on several performance areas.

Johnson said the quality metrics, which are derived from documentation in patients’ charts, showed that in the spring of 2009, only 36.25% of their patients were having their emotional needs assessed. “As I was doing the chart abstraction,” said Johnson, “I noticed that all of our patients who were actually assessed for emotional needs were so blatantly distressed that the oncologist or the nurse could not possible move forward with doing their job without attending to those needs.” Most of these patients (95.45%) were referred for intervention, and the concern was that perhaps patients who had not been assessed were also in need of intervention.

Goals of the Study

Johnson wanted to make sure every patient coming into the clinic had an emotional needs assessment. Johnson said it is important for the nurses to ensure that every patient is aware that emotional support is a routine part of care. “Not only do we want to treat their cancer, we want to support them as people and assure them that their feelings of distress are normal,” she explained. According to Johnson, every patient with cancer experiences some distress, ranging from normal feelings of sadness and vulnerability to severe depression. “We have had patients that are lost to follow-up because they are in such distress that they can’t cope and just don’t come back,” said Johnson, adding that it was important to keep these patients from falling through the cracks.

An oncology nurse herself, Johnson knew that oncology nurses are uniquely positioned to perform this task and direct the patient to needed interventions. She felt the best way to ensure every patient was evaluated would be to institute a structured process. She assembled an interdisciplinary distress management team led by nurses to develop one for their center that encompassed guidelines on early assessment, interventions, and follow-up.

One of the team’s first steps was to assess the nurses’ perception of their practices in handling patients’ emotional needs. “I found that most of the nurses were actually doing this work but not documenting it, and many were not making appropriate referrals…to social workers or psychologists and psychiatrists,” Johnson explained. She said oncology nurses are educated in offering a therapeutic presence but some patients need the more intensive services these other experts are trained to provide. Teaching the nurses when to refer a patient for more extensive intervention was crucial.

Training and Documentation

The next step Johnson undertook was training the facility’s 28 nurses who were case managers or care coordinators on the National Comprehensive Cancer Network (NCCN) guidelines for distress management. “It includes emotional distress, psychological distress, and spiritual distress,” Johnson said. They learned how to assess patients, identify sources of distress, evaluate levels of distress, and determine when intervention was appropriate and which ones to consider. “At the very least, every patient should receive information on our supportive services,” she said. In addition to counselors and psychiatrists, nurses had the option of referring patients to Moores Cancer Center’s own resource center, which provides information and a schedule for relevant support groups.

An important aspect of assessing patients for distress is documenting any information in their charts, and Johnson gave the nurses a template with five different elements to be assessed preferably at every visit but at the very least during the first visit. The template required noting who was with the patient (the patient’s support system), what the patient said about his or her own level of distress, and an objective assessment of the patient’s affect and mood. Johnson gave examples of the things nurses should document. “Are they tearful or do they have a flat affect? Are they cheerful?” Johnson said cheerful patients make her nervous. “I had one patient that was very cheerful, and I said to the oncologist, ‘You know, we need to look out for depression in him.’ And he said, ‘Well, he’s really cheerful, he’s always joking.’ But at the next visit, he gave him a tool asking some very pointed questions, and the patient actually had suicidal ideation, so we want to be wary of that,” Johnson said. The last two items include any intervention the nurses do themselves, such as providing information or listening to the patient’s problems, and any referrals.

Study Outcomes

Within a few month of implementing this training, Johnson said scores of emotional needs assessed nearly doubled, from 36% to 69%. The percentage of patients who received intervention went down, which Johnson said might be because many patients did not need intervention or because the nurses did not realize providing information constitutes intervention. A surprising finding, according to Johnson, was that the percentage of patients who felt their emotional needs were addressed stayed relatively flat, at 68.6% in the spring of 2009 and 65.1% in the fall of 2009. She speculates this is because patients are not always aware that they have emotional needs that need to be addressed. “I’m not really quite sure what’s at work there,” she acknowledged.

Johnson said she continues to review charts and has observed an increase in the amount of documentation and an increase in the absolute number of psychology referrals. It was difficult to determine, however, whether the increase in referrals to psychologists was simply due to seeing more patients. In addition, the follow-up data demonstrate improvement in quality measures, Johnson said.

The Next Phase

Johnson believes, based on historical data, addressing the patient’s distress will lead to improvements in their physical symptoms and reduced costs. “If you’re very distressed, physical symptoms are worse. Anxiety increases pain, we know that from research,” she explained. It also affects adherence to a treatment plan, which has a direct relationship to outcomes. “Less anxiety on the patient’s part leads to fewer office visits and fewer phone calls and fewer emergency department visits,” added Johnson. “Regardless of whether they still have anxiety, the knowledge that there is a support system here and that their providers actually acknowledge those feelings as normal and that it is a part of their treatment gives them a stronger sense of partnership with us and it empowers them more,” she concluded.

Moores Cancer Center is working on phase II of the study, which will involve additional training for the nurses by psychologists in the center’s Patient and Family Support Services unit. This will include a literature review to evaluate the physical and financial consequences of anxiety in patients with cancer.