Patient-centered care is the new buzzword in medical and health policy circles today. Choosing which of several possible treatments to use is supposed to be based on "shared decision-making." Treating chronic disease ought to involve patients in "self-management." Patients should be cared for in a "medical home." All these innovations are designed to put the patient at the center of the health care system. They are associated with better quality and lower costs than the more traditional physician-centered, paternalistic approach to care.
But they leave frail older people out in the cold.
Patient-centered care can work for older people with multiple chronic conditions or advanced illness only if it incorporates their caregivers. Between one-third and one-half of all people over age 85 have some degree of dementia limiting their ability for self-care. Even people whose minds work fine when they are well often develop delirium, or acute confusion, when they get sick. And those who are cognitively intact often have trouble with vision or mobility or hearing, which gets in the way of their taking full control of their own health care. If physicians and health care institutions are serious about bringing the benefits of patient-centered care to the oldest and most vulnerable patients, they must involve caregivers in all phases of medical care. That's what I argued in an essay in JAMA this week.
Caregivers need to understand the patient's underlying health status--not just how long they are likely to live, although that is important, but also what bumps they are likely to encounter along the way. They need to participate in the critically important process of defining and prioritizing the patient's goals of care because those goals will shape the approach to treatment that is right for the patient. Caregivers need to help design the plan of care--figuring how best to translate the goals into practice when the patient becomes acutely ill, as all frail people will.
Currently, over 80 million Americans serve as caregivers for adults. Many of them are responsible for pretty complicated medical tasks, whether administering multiple medications (sometimes as many as 15 or 20 a day, all of which come with potential side effects) or changing dressings on open wounds or operating technological equipment such as dialysis machines or feeding tubes. Only when physicians actively integrate caregivers into the treatment of frail older patients will those patients be able to enjoy the fruits of patient-centered care.
Doctors need to make the radical switch from individualistic, autonomy-driven care to family-centered care. Changing deeply ingrained behavior is hard. But physicians need to understand that they, along with patients, stand to gain from the change. Patient-centered care is essential to achieving the outcomes that are good for patients--and on which doctors will increasingly be judged.