annual HEALTHCARE issue
GETTING PERSON-CENTERED HEALTHCARE
BY JAMES W. MOLD, MD, MPH
Have you ever delayed or avoided seeing a doctor for fear they would find something else wrong or recommend additional tests or treatments? Did you know that the central organizing feature of your medical record is the problem list? Have you ever seen the problem list in your or a family member's medical record? Were you surprised by how long it was? How did that make you feel?
For mostly historical reasons, most medical care today is based upon the following assumptions about health: 1. It is possible to define normal health; 2. Deviations from normal are bad; and 3. Efforts to maintain or restore normality are the best ways to help people live long, enjoyable lives.
Of course, those same three assumptions also apply to cars and watches. Maybe that's why medical care sometimes feels mechanical. It may also be why laboratory tests, X-rays, scans often seem more important to your doctor than knowing how a particular health challenge is impacting your or your family member's life. Unlike cars or watches, people have hopes, values, preferences, goals, and priorities. What is normal for one person is abnormal for another, and what is a problem for one may be an advantage for another. And unlike cars and watches, people often become stronger as they face challenges and overcome obstacles.
The healthcare system is actually trying hard to make care more humane, collaborative, and convenient. Those improvements are often called patient-centered care. However, patient-centered care, as currently envisioned, is driven by the same three assumptions. The focus is still on preventing and correcting abnormalities. The goal is still to make you or your loved one "normal". What if, instead of asking, "What's the matter with you (or your loved one)?" your doctor first asked, "What matters to you (or your loved one)?" That approach, called person-centered care, changes the focus of attention from fixing things to helping each person achieve their personal goals and reach their full potential. Problems are seen as obstacles, challenges, or opportunities for growth. Health is viewed as the ability to derive as much enjoyment and fulfillment as possible from life's journey.
Two approaches to person-centered care have been described. The first, called narrative medicine, focuses on each person's life story and the impacts of health-related events on that story. Telling your story can help you see challenges and opportunities more clearly, and once they understand your story, doctors are better able to help you make better medical choices. Many medical schools now teach the principles of narrative medicine, so it ought to be more available in the future.
The second approach, goal-oriented care, assumes that nearly everyone has four major life goals: 1) survival (prevention of avoidable death); 2) engaging in essential and meaningful activities and relationships (quality of life); 3) personal growth and development (meaning, purpose, resilience); and 4) a good death (consistent with one's values and preferences). Each person defines and prioritizes those goals differently based upon their values, preferences, vulnerabilities, and resources and at different points in time. Once a person's goals, priorities, and acceptable trade-offs are clarified, it is possible to determine which medical interventions are likely to be most helpful to them.
Most people value quality of life over the other three goals until they are faced with death. It is only then that they realize how much they enjoy life. Confucius said, "You have two lives. The second one begins when you realize you only have one." Of course, life can sometimes become meaningless or unbearable. At that point, survival is no longer a goal.
The most effective way to delay death is to focus on the most likely reasons a person might die prematurely. A person with swallowing trouble who is at risk for pneumonia, for example, can live longer by taking good care of their teeth and gums where the pneumonia germs live, avoiding contact with infected others, and washing their hands more often. A person with poor balance who is at risk for falls can focus on improving their balance and strengthening their legs and feet. That doesn't mean we should ignore other preventive measures, only that we should focus on the ones with highest impact first.
Activities that are important and meaningful differ from one person to another. Medical care to improve quality of life is most helpful when it focuses directly on a person's ability to participate in those activities rather than on eliminating abnormalities. It is less important that a person walks "normally" than that they can get where they need to go.
When healthcare promotes recovery of function after an illness or injury, we call it rehabilitation. Occupational therapists and sports medicine physicians use this approach. When the strategies involve developing new skills or improving existing ones, the process is called habilitation. Sports psychologists and fitness coaches use this approach. Goal-oriented care combines both approaches. When medicines are prescribed, the primary focus should be on the activities, not the symptoms, side effects should be tolerable, and the medicines should be stopped periodically to see if they are still needed.
Each of us is unique. Diversity should be encouraged and celebrated. And life is filled with challenges. That's a good thing. It gives us lots of chances to become stronger, more capable. Goal-oriented healthcare helps each person become all they can be, physically and psychologically. Avoiding or delaying antibiotics for minor infections allows our immune systems to become stronger. Viewing challenging events as opportunities for growth makes us better able to face larger challenges in the future.
End of life planning should not wait until death is imminent because death can occur without warning. In fact, it usually does. There is nothing morbid about admitting that we are all going to die at some point, and when we do, we want it to be a good death. That is more likely to happen if we plan ahead. Everyone with the capacity to do so should complete relevant advance directive documents (e.g., living will, durable power of attorney for healthcare, do not resuscitate). Those who will be involved in end-of-life decisions, when the time comes, should understand your values and preferences about death and dying. Until the healthcare system fully adopts a person-centered approach, you will need to help your doctors by doing the following:
1. Think about the story of your life or your loved one's life. How have particular people, places, and events affected the course of events? What have been the most important challenges? Where does the story seem to be heading? How is it most likely to end? Make sure your doctor hears that story.
2. Carefully consider your or your loved one's priorities, and don't forget what Confucius said about two lives. Think about things that could put you (or your loved one) at risk for premature death or disability. Consider what you can do now to prevent or delay those undesirable outcomes.
3. Try to help your doctors focus on the activities and relationships that are most important to you or your loved one.
4. View each health challenge as an opportunity to become stronger, more resilient.
5. Think about what conditions in life would be worse than death. Then complete an official advance directive document. If end-of-life decision-making is likely to be problematic, consider creating a durable power of attorney document covering healthcare decisions as well.•
ABOUT THE AUTHOR:
James W. Mold, MD, MPH: George Lynn Cross Emeritus Research Professor Department of Family and Preventative Medicine, University of Oklahoma Health Sciences Center, Oklahoma City, OK. Dr. Mold received his Bachelor of Science Degree at the University of Michigan and his medical degree from Duke. He completed a residency in Family Medicine at the University of Rochester and a Master of Public Health in Biostatistics at the University of Oklahoma. He practiced in small town in N.C. for six years before joining the faculty at the GOAL ORIENTED MEDICAL CARE goalorientedcare.org University of Oklahoma in 1984. There he practiced family medicine and geriatrics, taught, and conducted research. In 2014, he retired and currently lives in Chapel Hill, NC. with his wife Sandy and their golden retriever Lily.