Patient advocacy groups play a vital role in supporting individuals through their healthcare journeys. One of the most challenging aspects of this support is handling difficult conversations with patients. While patient advocates are a notoriously empathetic and supportive group, most do not come into their role with formal training on effectively navigating heavy topics. Like many aspects of patient advocacy, learning what to say, where to say it, and how to move forward can take years of trial and error. To set advocates up for success, this article offers practical strategies for navigating sensitive patient discussions with empathy and professionalism.
The Importance of Difficult Conversations
Difficult conversations are an inevitable part of patient advocacy. Whether discussing the after-effects of a life-altering diagnosis or helping families make tough decisions, these conversations are crucial for several reasons. First, the conversations allow groups to show support to patients and caregivers throughout their diagnostic or treatment journey, reassuring them that they are not alone. Second, these conversations build trust between the patient and the advocacy group, which is why it is critical for advocates to be compassionate and honest during them. Finally, these conversation require an in-depth understand of the disease and its natural history to provide guideance– for this reason, such conversation force advocates to be very knowledgeable about the disease in question. All of these responsibilities can be a lot to juggle as a patient advocate, which can make it difficult to be present during conversations with patients. Fortunately, there are some strategies that can help.
Strategies for Handling Difficult Conversations
Before:
- Gather Information: Understand the patient’s medical history, current condition, and treatment options. Be aware of any cultural, religious, or personal preferences that may influence the conversation.
- Create a Safe Environment: Choose a quiet, private space where the patient and their family feel comfortable discussing sensitive issues. Minimize as many interruptions as possible.
- Anticipate Questions: Based on research or personal experience, think about potential questions or concerns the patient or their family might have. This can help you prepare thoughtful, empathetic responses if you feel that is necessary and inform any resources you might bring with you to the meeting.
- Practice What You Want to Say Beforehand: As mentioned before, learning how to handle difficult conversations, like any skill, requires some trial and error. To prevent that from affecting patient relationships, it is beneficial to practice with loved ones. For example, you could make an effort to actively listen when your friend complains about work or practice explaining the benefits and drawbacks of clinical trials to your spouse.
During:
- Stay as Present as Possible: Give the patient your full attention and ask clarifying questions if needed to avoid misunderstandings.
- Encourage Questions and Communication: Invite the patient to ask questions and express their concerns.
- Provide Accurate Information: Patients need accurate information to make informed decisions. Share information and advice honestly, even if it is difficult to hear. If the conversation is outside your expertise (for instance, if a patient expressing frustration with their current treatment plan) promptly connect the patient with someone more appropriate.
- Use Appropriate Language: Some patients and their families may be well-versed in medical jargon, some will require more simplified explanations. Adjust your language to match the needs of the patient.
Follow-Up
- Provide Additional Resources: Connect the patient with any relevant resources, such as pamphlets, websites, or support groups.
- Check-In: Arrange follow-up meetings or calls to address any ongoing concerns and provide continuous support. If, for instance, you connected the patient with a resource outside of your patient advocacy group, reach out to see if it has been helpful.
- Consider What You Learned: Take insights from the conversation, as well as previous ones, to inform potential new programs or resources that can better meet patient needs. For instance, if multiple patients have discussed their frustration about physicians not understanding their condition, that may suggest a need for more educational initiatives and natural history research in your disease area.
Difficult conversations are a fundamental part of the work done by patient advocacy groups. By preparing thoroughly, practicing active listening, being honest and transparent, and following up, advocates can effectively navigate these conversations. These strategies not only help in providing necessary information and support but also strengthen the trust and rapport between patient advocacy groups and the individuals they serve.
