Talking About a Cancer Diagnosis

February 5, 2007

Cancer is a life-altering experience, and newly diagnosed cancer patients need information throughout the course of their disease. In the 1970s, Weissman and Worden identified the first 100 days surrounding the diagnosis of cancer as an "existential plight" in which patients suddenly confront their mortality.[1] During this fragile period of fear and anxiety, the need for information is tantamount to the patient's mental well-being. Providing quality information to cancer patients and their families is an essential aspect of care, but it is not always clear how and when information should be delivered. The purpose of this article is to suggest simple steps for talking with patients about their diagnosis, assessing their understanding, and facilitating their ability to share their concerns, fears, and hopes.

Cancer is a life-altering experience, and newly diagnosed cancer patients need information throughout the course of their disease. In the 1970s, Weissman and Worden identified the first 100 days surrounding the diagnosis of cancer as an "existential plight" in which patients suddenly confront their mortality.[1] During this fragile period of fear and anxiety, the need for information is tantamount to the patient's mental well-being. Providing quality information to cancer patients and their families is an essential aspect of care, but it is not always clear how and when information should be delivered. The purpose of this article is to suggest simple steps for talking with patients about their diagnosis, assessing their understanding, and facilitating their ability to share their concerns, fears, and hopes.

Oncology nurses work in a variety of challenging clinical settings and they may not have a clear understanding of their role in communicating with patients and family members about the diagnosis and its implications. Naturally, patients expect the physician to discuss their test results and the initial disclosure of a cancer diagnosis is always the physician's primary responsibility. However, a diagnosis of cancer warrants more than a one-time conversation, and if the oncology nurse is present when the physician breaks the news, the nurse has an opportunity to clarify any points the patient might be unclear on. Ideally, discussing a cancer diagnosis needs to be seen as a process, one that gives the patient adequate time to digest its full implications.

Benoliel recognized that cancer patients need to know what is happening to them, and to be able to talk with someone who will listen to all their concerns. They need an opportunity to experience the full emotional range of their situation without hiding their feelings in order to protect loved ones from distress. They also need to be an active participant in the decisions affecting their treatment options.[2]

Clear Communication

When talking with a patient it's best to choose a quiet setting and schedule adequate time so the conversation is not rushed. Ask if a family member is able to join you so each participant is aware of what is said, and can assist each other with processing the information. Ask the patient and family member what they've been told so far, and what they understand about cancer. Use simple, clear language when describing what the disease of cancer is. Also ask what the doctor has told them about how they plan to manage the disease. Be positive, but avoid the natural temptation to minimize the gravity of the situation. It's important to assess how both patients and family members react during these difficult conversations. Once you feel they've grasped the information, ask them explicitly how they feel about what's happening. Express genuine sadness, but reassure the patient and family member that there are resources to help.

If the patient is alone when the conversation occurs, ask if there is someone else who needs to know what was discussed, mention that you'd be glad to contact that person for the patient. Encourage the patient to talk with others and to ask questions, no matter how trivial they might seem. If the patient appears highly distressed, recommend a referral for a psychological evaluation and follow-up. Give the patient the name and phone number of a professional. Be sure to document what was discussed in the patient's health-care record so other providers are aware of what occurred. Timely follow-up is important; call the next day to see if the patient has additional questions or concerns.

Follow-up Visits

At the patient's next office visit, create a continuity of compassionate care, make eye contact and address the patient by name. Get a general sense of how they're doing and find out if they have any questions related to your previous conversation. It's important to keep the lines of communication fluid. Ask what happened in their lives since the last office visit. For instance, ask how others have reacted to hearing about their diagnosis, who they have told and how did those encounters go. Ask if they need help telling other people about their cancer. Suggest a simple strategy such as giving family members permission and/or the responsibility of sharing their situation information with others.

During these patient encounters, it's also important to assess the patient's level of emotional distress. There are easy-to-use tools such as the Distress Thermometer to identify elevated distress. The Thermometer ranges from 0 to 10; a mark of 4 or above warrants evaluation by a mental health provider.[3] Again, these encounters need to be logged in the patients' medical record so the full care team will be able to gauge how the patient's is coping with the issues surrounding the cancer diagnosis.

If you have regularly scheduled contacts with patients, then you need to expand your conversations to include a discussion of the implications of a cancer diagnosis. For many people, cancer provides an opportunity to reevaluate priorities in life and figure out what they would like to accomplish given the uncertainty of their situation. It's important to understand that full knowledge of the patients' cancer stage and treatment plan isn't necessary in order to have these conversations.

Use direct questions and simple language during these contacts. Ask, for instance, what if the cancer isn't all gone, what would you like to do with the time you have remaining? This gives the patient an opportunity to think out loud with someone who is nonjudgmental and can provide feedback about whether the patient's expectations are realistic.

LEARN PATIENTS' GOALS

Understanding what's important to the patient helps providers recommend treatment options that best match the person's wishes. It also helps providers make appropriate and timely referrals to the correct supportive care services. Comprehensive cancer care is best provided by a team of multidisciplinary specialists; it is critical that each member participates in the information-sharing discussions with the patient during the full continuum of care. Providers should gather information about not only the patient's cancer and their responses to treatment, but their psychosocial needs and fluctuations during each encounter. Mechanisms used to document this information so it is shared among providers are critically important.

Quite often, cancer patients don't have the energy, desire, or need to talk about their diagnosis with all members of the care team. However, the team needs to be confident and monitor their patients so that the channels of communication during difficult periods remain open. This is not only an excellent opportunity to connect with patients—it is our responsibility as their health-care providers.

Disclosures:

The author has no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.

References:

1. Weisman A, Worden JW: The existential plight in cancer: Significance of the first 100 days. Int J Psychiatry Med 7:1-15, 1976.

2. Benoliel JQ: Care, communication, and human dignity, in Garfield C (ed): Psychosocial Care of the Dying Patient. New York, McGraw-Hill, 1978

3. The National Comprehensive Cancer Network 1.2005 Distress Management, The Complete Library of NCCN Clinical Practice Guidelines in Oncology [CD-Rom]. Jenkintown, Pennsylvania, National Comprehensive Network, May 2005.