When Bob Whitlow, a long-time paraplegic, faced a recent health crisis, he hired a private health advocate to help. Given the increasingly complex health-care system, it’s a path more patients may start taking, says MarketWatch’s Kristen Gerencher
The father on the phone was obviously in distress. His daughter, now 15 months old, had spent the major part of the last year in a pediatric hospital. His child, he said, had trouble breathing and needed suctioning every 15 minutes, but the hospital was saying she was ready to be discharged. “How can this be?” this perplexed father asked.
This is not an unfamiliar story: how and why things happen in a hospital is a mystery to many families, no matter what age their family member is. What are some strategies we all can use to make transitions to and from various settings easier?
- Core Strategy: Begin planning for discharge the day of admission. The moment someone enters the hospital we have to think about the discharge plan. Too many times patients say, “I never met this person before, and she/he came in one morning and said I was going home that afternoon.” Some of the most difficult discharge planning scenarios occurs because the process is too abrupt and patients and families get scared. If a patient looks “low priority” on admission, that does not mean we can wait to “get to them” until the day they are discharged. Much of the resistance we encounter at discharge might disappear if we did a brief introduction the day of admission.
- Core Strategy: Think “out of the box” about communication with patients and families. So many misunderstandings that happen during the hospital stay occur because families do not understood what is happening. In extremely complex medical situations the norm is to communicate through team meetings with the family, but this may not be the most effective way to work with them. Families frequently call me for help after just such a meeting. “There were all these people in the room”, they say, “and we couldn’t remember what they all do and they were trying to tell us how things were going and we couldn’t understand them.” In any large system, a family will have certain providers they seem to talk with more easily. Instead of “Team Meetings” with all the players there, what if we called them “Family Updates” and just one member of the team met with the family? After all, we frequently say to families, “Pick one person in your family as the point person,” because we know it is a more effective communication system. The same is true for families: it is more effective for them (and much less intimidating) if they talk with just one team member so they are not overwhelmed: they need a “point person” on the medical team. In some cases, this “point person” may not be a physician: it may well be another member of the healthcare team. We need to be flexible in the way we communicate information.
- Core Strategy: Use simple language. It is easy to forget that the world of medicine is an alternate universe with its own language, customs and behaviors. Patients enter this alternate universe, and they encounter all the problems of cross-cultural travel. In addition, they are very ill and do not have the resources to think and analyze information well. Even their friends and family may not understand our language. If we drop medical jargon from our explanations and are prepared to repeat the information several times, the families we work with have a greater probability of understanding us. Stressed families can only absorb a limited amount of information at one time. They need to hear it multiple times so they can move to a point of decision-making.
- Core Strategy: Focus on care coordination. The system of care has changed—and most patients do not know it. They do not understand the Hospitalist system of care and still expect their family physician to follow them into the hospital. It is a shock to learn that may not be the case. They may already be struggling with a new diagnosis or a poor surgical outcome, and a different system of care adds to the stress. Be prepared to explain this system of care and provide reassurance that their primary care physician will get a report of what happened during their hospital stay.
- Core Strategy: Realize that patients do not know how medical decisions happen. Medical decisions—good ones—are “found” not “made”. There is a big difference between how the medical team looks at decision-making in healthcare and how our patients do. Patients frequently believe that their provider can get information (from labs, scans, biopsies etc.) and then simply “make” a decision about the best treatment option. In reality, those decisions are “found”: the healthcare team looks at all the information, tries to judge what might work best, integrates more information, changes their minds, suggests something else: it’s a moveable process. Treatment plans can shift quickly. In the end, we hope to “find” care that works and enhances the patient’s quality of life. The process may look chaotic to patients and families. We need to communicate how and why we do what we do.
- Core Strategy: Have an answer for the hardest words: “I promised I’d never…” We hear this all the time: “I promised I’d always take care of them”; or “I promised I’d never send them to a nursing home.” We need to help people look beneath those words to what they were really promising: to care for their family member in the best way possible. It is important to have these discussions because it helps move families from feeling guilty about their care decisions to feeling peaceful about them. When they have made that shift, options that did not seem possible before can emerge and ease the transition to the next level of care.
The father of the 15-month old girl had struggled unsuccessfully to understand the decision to discharge rendered by a complex system. His daughter’s medical team had struggled to provide the best care possible after a devastating medical event. The challenge now is to integrate the family and the team so that the next step (e.g. accept discharge, or advocate for continued medical care) will be in the best interest of the patient, and one the family can understand and successfully accommodate.