No professional expects every conversation with patients or families concerning code status, quality of life, intubations, and tracheostomies to be straightforward or easy to facilitate. However, discussing pragmatic options with patients and loved ones and helping them arrive at their personal definition of quality of life is a gift of truth we owe to our patients.
It can be difficult to guide a family towards a realistic understanding of their prognosis. Here are 5 tips to make it easier on the patient, family, and you:
Kelly was in her early 40’s. She had breast cancer that had metastasized throughout her body. She was in and out of the ICU and the step-down unit for almost two years. The first time she graduated from ICU to step-down the family was so excited, especially after proving all of the naysayers wrong. Kelly was a fighter! Her mom insisted she was going to make it out of the hospital. As anyone who has worked in intensive care might suspect, three short days after that graduation out of the ICU, the page came over the intercom: “CPR team STAT with intubation,” the call came from Kelly’s room. She came back to the ICU, and the disappointment and fear was evident her family’s eyes. This cycle repeated in various ways for the last two years of Kelly’s life.
During Kelly’s fight, her husband mentioned several times that he wanted to put her in hospice. He had approached each nurse asking questions about her options. Kelly’s mom, however, pushed her daughter to keep fighting. Her encouragement came from a place of love but cast a pallor over the family. The word “cancer,” was not allowed to be spoken in the room, and Kelly’s mom was making all of the decisions for Kelly and her husband. Telling the inevitable truth of Kelly’s prognosis seemed futile to the physicians, so they kept suggesting courses of treatment that left Kelly fighting an endless, futile battle. Kelly was torn between wanting peace and comfort and not wanting to disappoint her mother.
She needed someone to say to her mother that her daughter was not going to recover. Someone to say, “We can turn off the alarms, get rid of all of the bells and whistles, wires, tubes and needles, and provide peace.” The following day, after similar conversations with ICU nurses, a physician sat down in a conference room with Kelly’s mother and husband. He told them Kelly would never leave the hospital, that everything the team was doing at that point was just to prolong the inevitable. He explained that without a change, Kelly would suffer until that happened. He was candid and kind and spoke honestly to Kelly’s mother and husband.
The family met and agreed that Kelly would love to have her best friends and closest family members with her, and that she really needed to see her dogs. She was a dog lover and her two huge, loving huskies that she missed terribly hadn’t been able to see her while in the hospital.
Ultimately, Kelly died a peaceful death surrounded by those she loved most, but her very long and futile fight in the ICU could have been made much easier. Her ‘truth’ came very late. Had she been given the gift of truth and the opportunity to go home with comfort care, she could have experienced her remaining time at home with her family and huskies.
Hospice specialists are experts at explaining the concept of shifting to comfort care rather than curative treatment. The hospice team can provide literature patients can read at their leisure, and resources and phone numbers for them to call and ask questions. Ordering a hospice consult early in the process can diffuse potentially difficult situations. Decisions about hospice are easier to make if the groundwork is laid earlier than a moment of crisis.
Ultimately, no practitioner likes giving bad news to a patient or their family. But these conversations can save those in our charge endless exhaustion and help them avoid complex grief and guilt. The gift of truth is one of the most sacred ways we can honor and support our patients.