Healthcare professionals play a wide range of roles for newly-diagnosed patients who are faced with making treatment decisions. These roles include educating patients on the alternatives and helping patients to weigh the risks and advantages of each alternatives. The healthcare professional may recommend resources for a second opinion and/or make a recommendation for which treatment route to take. And the healthcare professional will inevitably play a supporting role as the patient moves forward with the results of this decision, going through treatment and subsequent recovery.
The Overarching Goal: Building Trust
Healthcare professionals can be most helpful in facilitating the decision-making process for their patients if they are able to build a relationship based on trust. A high level of trust may or may not mean that patients will trust their healthcare professionals to recommend the optimal course of treatment and, in turn, pursue this direction without question. Actually, most healthcare professionals prefer that the patient only make a treatment decision after carefully considering the options.
However, patient trust in the healthcare professional does mean:
- Patients trust the healthcare professional to ask the right questions and to understand how to competently use medical equipment and understand test results.
- Patients trust the healthcare professional to be aware of the latest treatments and to provide a balanced discussion of the benefits and risks of each treatment.
- Patients trust the healthcare professional to listen to their concerns and answer their questions honestly and in terms that they can understand.
- Patients trust the healthcare professional to consider their opinions, including opinions based on what they have learned through their own research, as well as to consider opinions they have gained by consulting with other healthcare professionals.
Establishing this level of trust during the initial treatment decision-making process is not completely under the control of the healthcare professionals. As discussed in previous chapters, newly-diagnosed patients bring their own experiences and prejudices to the relationship, and patients may subsequently erect barriers that are difficult if not impossible to overcome. How patients are reacting – Flight, Freeze, Fight – plays a role, especially in regard to the role of emotions.
Here are some ideas:
Listening and Being Supportive
Listening to another human being is the greatest way to honor them. Newly-diagnosed patients can greatly benefit from being with healthcare professionals who are willing to simply listen to their concerns, gently probing around areas that, if illuminated, might help the patient to make a more informed decision. Being a good listener means being non-judgmental, being open and receptive, without showing disapproval or otherwise directing the patient toward what the healthcare professional wants or does not want to hear. When patients feel that their healthcare professionals are listening to them, they are more likely to feel as if their individual needs are being acknowledged and considered in the information that they receive. Essentially, patients are more likely to feel that their healthcare professionals care about them. During what can often be a highly stressful situation, as the implications of various treatment options are considered, this reassurance can be invaluable to a patient.
Educating the Patient
Patients will be most receptive to information if it is presented from the perspective of an educator. There is a not-so-subtle difference between lecturing a patient and educating a patient. When a patient is lectured, the facts are presented in a one-size-fits-all format and the patient is left to digest what was clear and what was not so clear. Educating a patient is a step-by-step process which begins with gaining an understanding of what the patient currently understands, and the stepping through the process of expanding the patient’s knowledge, supplemented by check-ins along the way to assure that the patient is indeed understanding what is being discussed while also gauging how the patient is reacting emotionally. As such, educating a patient requires interacting with the patient on both cognitive and emotional levels.
Patients appreciate hearing about the treatment experiences of other patients with the same diagnosis, through anecdotes, printed information, and links to Websites. They also respond well to third party information about their diagnosis, and the treatment alternatives, published through independent organizations like the American Heart Association or the American Cancer Society. Brochures provided by pharmaceutical companies can also be useful as an information source. The benefit of providing patients with information from various sources reinforces that the healthcare professional is attempting to be objective, and that he/she is making recommendations that are widely acceptable in the field and that have benefited other patients in the past.
Patients respond well to healthcare professionals in an educational role from an emotional perspective. While newly-diagnosed patients are usually unfamiliar with interacting with healthcare professionals at the level of involvement required after a diagnosis has been made, they are familiar with the teacher-student role and have generally positive associations with this relationship. Consequently, they may relax their defenses when healthcare professionals present themselves in the teaching role. And the teacher-student relationship is certainly positive when patients are attempting to gain and process the information necessary to make an informed medical decision.
Patients want to feel like they are working with their healthcare professionals as a team. Teamwork implies that not only do the healthcare professionals care about their welfare, but that they also have a stake in seeing them get better. This is especially important when patients are making decisions about their treatment because teamwork enhances a sense of security and facilitates greater communication. Healthcare professionals can encourage a sense of teamwork by directly referring to themselves as members of the patients’ team, as well as through more indirect methods like sharing information, continuing to check in with patients regarding concerns and feelings, and answering questions in an honest manner.
There is a subtle difference between advising and educating a patient. When patients feel advised, they assume that the healthcare professional is basically telling them what to do. While patients may appreciate direct advice, they may also be skeptical of this advice, based on the assumption that the healthcare professional’s personal biases are being reflected in this advice. Furthermore, patients who perceive that they are being directed toward a specific treatment will be more likely to feel less in control of their healthcare and less likely to take personal responsibility for the decision.
Self-efficacy is enhanced when patients are encouraged to be independent and self-directed during the process of making medical decisions. This can be accomplished in a variety of ways. Guiding patients toward their own information-gathering can be a starting place in building a sense of control. Allowing patients to make simple choices wherever possible, e.g. where they report to for tests, or what kinds of exercise they choose, can begin to instill the idea that patients can be active in their treatment. While patients realistically have only a limited amount of power over their treatment destiny, encouraging as much self-efficacy as possible helps to provide a feeling of involvement and influence that can help to counter the sense of helplessness that ultimately all newly-diagnosed patients experience at some level.
Being Sensitive to the Readiness Factor
The importance of readiness to listen to information and to make decisions has been implied throughout this discussion. Patients progress at their own individual levels of readiness in terms of when they can hear and process information. Some patients can begin immediately after diagnosis to listen to information and consider their options, while others can’t. Emotions, past experiences, and current knowledge level all play a role here, as does how the patient is reacting to the diagnosis. The patient’s individual intellectual abilities are also a factor. Overall, lingering concerns of readiness are the result of unresolved fear. However, a contradiction also exists. While patients may not feel ready to face their condition and its treatment, the situation may be of an urgency that patients may need to make decisions before they have achieved emotional readiness. There are no clear guidelines here – the patient’s individual readiness must be weighed against the urgency of beginning treatment.
From “After the Diagnosis,” by Gary R. McClain, PhD; Cengage/Delmar, 2010.