The ideal patient experience: Education, trust help define realistic expectations
Open communication between health care providers and patients makes the course of treatment easier for all involved. Effective communication starts with the initial visit and continues throughout the treatment process. It is important to remember that relaying information in a way that it is actually understood will help patients diagnosed with cancer come to terms with the nature of their disease, the degree of advancement, the recommended treatments and the expected outcomes.
An online Harris Interactive survey commissioned by Cancer Support Community (CSC) and Cephalon Inc. showed that nearly all responding patients and physicians agree that being an informed patient is important to ensure effective communication but also found that patients need guidance on how to communicate with their health care providers.1 In response to the survey results, CSC, in collaboration with Cephalon Inc., developed the Framing Life With Lymphoma program (http://www.cancersupportcommunity.org/MainMenu/About-Cancer/Types-of-Cancer/Non-Hodgkin/Framing-Life-with-Lymphoma) to provide tools for patients to enhance communication with their physicians and other health care team members. Ultimately, establishing an open exchange with all members of the health care team allows patients to formulate realistic expectations that may alleviate some of their fears, and perhaps help to improve outcomes.
Effective patient education
Every physician approaches education differently, but the desired result is likely the same — an informed, comforted and involved patient. First, I encourage patients to research their diagnoses. The information they gather independently can then be discussed during the initial visit.
When seeing a new patient with a cancer diagnosis, I recommend physicians allot at least 45 minutes for the appointment. I always ask questions such as, “Has anyone talked to you about your situation yet?” and “What do you know about lymphoma?” This is the time to assess the extent to which patients are informed and address any misconceptions that may have arisen. I make sure to create a mutual understanding about the disease and treatments to eliminate ambiguity or confusion. Because that initial visit is so important to the patient, I take the time that is necessary to ensure that all appropriate and relevant information is relayed. By taking this approach, the patient is allowed the opportunity to begin his or her cancer journey as a proactive participant within the team of caregivers, rather than as an onlooker who feels powerless to inform the decisions that are made about his or her treatment.
The time I spend with my patients is further enhanced by the style in which I communicate. I speak slowly and make eye contact, and I try to be as comprehensive as possible during all appointments. I am careful to explain details in terms that patients can understand. I recommend stopping occasionally to ask if the patient has any questions to ensure that they are absorbing the information. I will ask again for questions at the conclusion of the consult.
It is not uncommon that patients think of questions after they leave. The Harris Interactive survey showed that 44% of patients do not ask all of their questions during visits, and 25% admit the reason is because they do not remember to ask them. Most of the physicians and patients surveyed felt that some form of aid or assistance can make discussions more efficient, and 70% of patients and 78% of physicians thought discussion materials would improve their conversations.1
Taking into consideration that patients may be overwhelmed or inhibited during their first visit, I suggest that physicians provide printed material that lists questions that are important to ask, or to make themselves available to patients after the initial visit. It may also be helpful to provide patients with educational material while in the waiting room to make sure the information is fresh in their minds upon meeting with the physician. All of these tactics can go a long way toward improving communication and ensuring that visits accomplish the goals of the providers and meet the needs of their patients.
Making joint decisions
The Harris Interactive survey results revealed that, while most physicians feel they involve patients in the decision-making process, 26% of patients with lymphoma feel left out when it comes to choosing how to treat their disease.1 Patients can only participate in the decision-making process in a meaningful way if they are informed. Everyone has opinions, but if patients are ill informed, those opinions are not grounded in fact. A physician may then spend too much valuable time explaining what can and cannot be done. Treating patients who are more informed is advantageous because they better understand what the physician says from the beginning.
Once I ensure that patients have the knowledge to take part in a discussion about treatment options, I engage them in shared decision making. Decision making should not be a 50/50 effort, however. In my experience, patients expect me to tell them what I think. For example, when at a point of considering chemotherapy treatments, I may present the pros and cons of each regimen, but I know I must narrow the field to two or three options that make the most sense. Rather than putting a decision like this solely on the patient, physicians can use this model as a means of entering into an informed discussion of treatment options.
A team approach
Inclusion in the health care team can translate into an ideal patient experience. A team environment has many advantages for patients from the first consultation and beyond. The informed patient may ask questions about issues the physician may not have otherwise addressed. Likewise, having more than one provider interact with the patient benefits all involved, because nurses will likely take a different approach to sharing and soliciting information than physicians. A topic of discussion that a physician may overlook may be covered by the nurse practitioner or another team member, and vice versa. Therefore, involving everyone helps to fill in the gaps to provide well-rounded patient care.
A team is not complete with just the physician, nurse practitioner and the patient. Although I believe that most physicians are thorough when addressing pain and other physical symptoms, some may not fully address the psychosocial effects of a cancer diagnosis, such as anxiety or depression. Therefore, I recommend health care providers direct patients to advocacy and support groups that can provide access to resources and information that may not be available elsewhere. Although not all patients may be interested, some may find learning about others’ experiences with the same disease to be comforting and empowering.
Particularly for an indolent non-Hodgkin’s lymphoma diagnosis, there is much to be discussed during the diagnosis and treatment process. Some details may be overlooked, such as covering all treatment options, discussing the impact on family and friends, or talking about important side effects. Therefore, it is necessary for providers to create an atmosphere of trust. Encouraging a sound relationship with each member of the health care team is crucial to helping the patient not only endure his or her individual experience, but also have some measure of control while living through it.
- Framing Life With Lymphoma survey fact sheet. Cancer Support Community. http://www.cancersupportcommunity.org/MainMenu/About-Cancer/Types-of-Cancer/Non-Hodgkin/Framing-Life-with-Lymphoma/National-Survey-Results.pdf. Accessed Oct. 12, 2011.
Lee Hartner, MD, is clinical assistant professor of medicine at Pennsylvania Hospital in Philadelphia. Disclosure: Dr. Hartner reports no relevant financial disclosures.