How Much Help Does a Helper Need for a Helper to Give Help?

For some time, I’ve been insisting that the exclusive focus on patients and doctors in our discussions of “shared decision-making” is misplaced. I’ve maintained that our single-minded devotion to “patient engagement” in the practice of medicine is likewise ill-conceived. For many older patients, making medical decisions and providing hands on care fall at least in part on the shoulders of caregivers, and for the oldest, frailest, and most cognitively impaired patients, the responsibility rests entirely with caregivers.Yet caregivers are consistently left out of the loop, or given inadequate information, or only called in at the eleventh hour. A new study in Health Affairs confirms my worst suspicions and argues that we need to provide considerably more support to caregivers if they are to function effectively as care partners.

The researchers identified a mere 66 studies that evaluated the involvement of caregivers in making one or more health-related decisions for seniors. Four of the studies tested an intervention such as a decision aid; the others were descriptive. Only 14 of the studies were quantitative; the remainder were qualitative or utilized a mixture of methods. The majority of the decisions had to do with either nursing home placement or end of life care. Almost all the studies identified unmet caregiver needs.

Interestingly, only one intervention led to improved decision making and didn’t seem biased, a study of a decision aid addressing the use of feeding tubes. But in general, what emerged from the analysis was that caregivers need more information, they need discussions of values and preferences, they need help in figuring out how to make a decision, and they need support from doctors and nurses—before, during, and after the fateful decision is made.

The new study also recognizes that caregivers are involved in making lots of small but consequential decisions, not just in major decisions such as whether an older person should move to a nursing home and whether the person should enroll in hospice. Deciding whether to bring a patient with cough and fever to the emergency room, for example, versus initiating treatment at home with oral medications and oxygen,  or using exclusively comfort-oriented measures such as Tylenol and morphine, has huge implications for the patient’s well-being, future trajectory, and for health care costs.

Caregivers aren’t yet another obstacle for busy doctors and nurses to overcome. Involving caregivers in no way diminishes patient autonomy—in fact, it promotes patient self-determination by providing a window into patients’ wishes and by helping clinicians implement those wishes. The caregiver needs to be seen as the clinician’s best friend, as the partner who can make all the difference. 

The way forward is clear: physicians and nurses taking care of older patients who have a caregiver need to involve that caregiver at every step of the health care journey. Identifying a nurse or social worker to serve as a health care coach for the caregiver would make the system work even better.