When patients feel like hostages

When the Mayo Clinic Proceedings published an editorial titled “When Patients and their Families Feel Like Hostages to Healthcare” in August 2017, the title was not only provocative but also true. Those admitted to the hospital with serious illness are in a vulnerable state and will often suppress their normal and reasonable wishes to “be liked” by their caregivers and avoid the “difficult-patient” label. After all, the medical team holds the key to restoration of health and life as it once was. However, patients and families never lose the right to have their voices and preferences heard and have their dignity affirmed in every clinical interaction.

To avoid the “hostage” scenario, patients and families need to be empowered to express their concerns, ask all their questions, and anticipate compassion without any fear of altering the outcome of their illness. Imagine you are admitted to the hospital with a case of severe pneumonia. What next? Of course, you are not only confused, but you also have an unsettling sense of vulnerability. What are some practical ways to make this transparent care occur?

• Come to every meeting with the care team with questions in writing and in descending order of importance. If unable to communicate freely, make sure someone you trust can speak for you.
• Ask that every member of the team identifies themselves and their role in your care.
• Establish who is the team leader—the “captain of the ship” — often the attending physician.
• Inquire to discover the areas of uncertainty in your illness.
• Share any suggestions on how to improve your care — need for quiet, communication issues, hospitality concerns, etc.
• Inform the team of any family concerns or questions, and do not hesitate to include family members in the meeting.
• Share gratitude for the things that have gone well.

Perhaps the most difficult experience is to be the parent of an ill child. Nothing can emotionally drain a mother or father more than a pediatric hospitalization. The advice above is just as valid. A parent’s desire to protect his or her child will no doubt drive every conversation. It is also critical to remember to involve the child in these discussions and never forget that their questions will often represent their deepest fears.

Finally, make every effort to learn about your illness or the illness of the one you love. Try to find reliable sources of medical information, and do not hesitate to ask your clinician to share their recommended internet sources. Venturing into the web without a guide can sometimes lead to misinformation and unnecessary fear regarding medical and health matters.

GREG BURKE, M.D., internist, is the chief patient experience officer for the Geisinger Health System, focusing efforts on the delivery of compassionate and quality medical care. He co-chairs the Catholic Medical Association’s ethics committee.