Establishing trust and communicating with “difficult” cancer patients and families

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With the US shift in practice model and the advent of the “Information Age”, interventional oncologists need to communicate with their patients more frequently and at more depth. The new practice model frequently puts us in the position of the primary treating physician as opposed to a consultant. We must be aware that the patient-physician relationship, particularly in oncology, is a privilege. These are a few points to keep in mind that could help deal with situations that are not easy, writes Majid Maybody.

It is important to remember that the vast majority of so-called “difficult” patients are those who are simply trying their best to understand and manage their own or their loved ones’ health issues. More vocal patients and families are usually actively engaged in their healthcare, presenting new, potentially important information, and expressing unmet care needs. Dealing with these issues is sometimes new for us and commonly burdens our resources. Understanding the underlying cause of each “difficult” case helps in implementing its proper remedy.


Trust

Trust must characterise each encounter with patients and families, and is built incrementally. A patient’s capacity for trust expands or contracts, depending on positive or negative experiences. Betrayal is defined as an actual or perceived breach of trust which can be intentional or unintentional. It diminishes the capacity for trust. Trust and betrayal coexist in all human interactions. They are fundamental to developing and maintaining relationships, achieving outcomes, and ensuring the integrity of individuals and organisations. Healthcare organisations demonstrate their trustworthiness by putting into place integrated systems with clinical, educational, and administrative infrastructure that enables healthcare professionals to practice in accordance with professional competencies to achieve the desired patient outcomes. Accordingly, concordance among team members of an interventional oncology service and members of other services involved in the multidisciplinary management of patients is fundamental in establishing trust.


Patients and their family

It is common to get “first impressions” about patients and their families in our everyday discussions with them. The two ends of the spectrum are “easy” and “difficult” patients. An easy patient, is actually one that should be called a convenient patient. It is someone who agrees with us and lets us be in charge of what happens and when. On the other hand, the so-called difficult patients and families are the ones who “drive everyone crazy”, are “too demanding” or “know too much”. In fact, the vast majority of them are simply trying to figure out their situation. Lack of proper relevant information whether from our own service or carried over from others is one of the main reasons that turn these patients or families “difficult”.

The family is a crucial resource to cancer patients. The patient and family are emotionally intertwined. Family members often serve as principal caregivers. This role is fulfilled by spouse (70%), children (20%) and friends or more distant relatives (10%). The “family” can be whoever the patient relies on and may include relatives, best friends or neighbours. Including key family members in our communications ensures better outcomes. Families are different in handling adversities. The resilient family adapts positively in the setting of significant adversity and is able to reorganise itself to ensure adequate care of an ill member. They believe that strength is derived from teamwork and adversity is a shared challenge to be overcome together. They do well in difficult situations. On the other hand, some other families can be at risk. They usually have poor cohesion and conflict resolution capabilities. They are either argumentative and help-rejecting or depressed but help-accepting. Both are at greater risk for morbid outcomes. Communication with these families and their patients is challenging. These challenges may be family-level, cross-cultural or interactional.


Challenges

Family-level challenges may be related to problems between the patient and his or her family. Relationship styles within a family can significantly impact patient care. Family members who cope well with the stress of illness communicate openly, band together in mutual support and manage disagreements without excessive conflict. On the other hand, families who get distressed with illness have fractured relationships. For such families we are forced to utilise more resources in order to ensure proper patient care.

A cross-cultural challenge is a mismatch between our team members’ and the patient/family’s own beliefs and values. It can be a common source of misunderstanding and friction between the two. Sequences of interactions between us and the difficult patient and family can cause vicious cycles of reactions in which each party unknowingly invites further escalation. In such situations we should pause, disengage and leave the scene momentarily but be clear about a plan to return. Several strategies have been described to help reset our minds during these short disengagement periods. The three-minute breathing space is an example of such strategies.

As trust is built incrementally, we should remind ourselves that it takes time and resources to establish it. Accordingly it takes a while with focused efforts to re-establish it once it is breached. So not being able to achieve trust in one session should not disappoint us. We do not have to always like our patients and their families to be able to provide the best possible care while maintaining an appropriate level of professionalism and compassion. We also do not need to know remedies to all communication challenges to succeed. Being aware of available resources such as social workers, communication skills programmes and counselling services is the key to success.


Majid Maybody is assistant professor of Radiology, Weill Cornell Medical College and director of IR Fellowship Program, Memorial Sloan-Kettering Cancer Center, New York, USA.
He has reported no disclosures pertaining to the article.

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