The caregiver as clinician: When life informs practice

Editor’s note: This blog post is the second part of a two-part series. Read part one.

For me, becoming a caregiver has put into perspective the difficulty of making decisions for others. But what can healthcare professionals do to lessen decision-making burdens and increase the likelihood of making “good” decisions?

First, we must accept that fully-informed or “perfect” decisions may not exist. We must simply make decisions that seem right at the time with the information available. But, if we accept that fully informed decision making may not exist, then we must be willing to tolerate unacceptable outcomes or outcomes that may not be what a patient might have wanted. We have to be OK with inaccuracies. The question then becomes what degree of inaccuracy we will permit and, to that, I have no definitive answer.

Second, we can increase the likelihood that patients’ or family members’ treatment decisions are medically appropriate by only presenting those clinical options that are medically indicated. Alternatively, we could present all options but clearly indicate which options are medically inappropriate (and therefore not viable options).

It frustrates me that we as healthcare professionals present all options, including those that are medically inappropriate, and then get upset with families for selecting an unreasonable option. If we present an option that is medically inappropriate as though it is a legitimate option, then patients and families will have little reason to think that option is anything less than appropriate.

To this end, it makes little sense to ask patients or families whether they would like resuscitation to be performed in cases where it would be harmful to perform resuscitation. If it would be inappropriate to initiate or maintain a treatment or procedure, then say so. By telling patients and families which treatment options are inappropriate and why, they are far less likely to select an unreasonable option.

Third, recognize that there may be reasons why the patient or family cannot implement your recommendations for reasons you do not see. Rather than write off an inability to adhere to your recommendations as “nonadherence,” be willing to explore how and why those recommendations may not be attainable. Normalize the clinician-patient or clinician-family conversation by acknowledging and asking about these limitations.

Fourth, recognize that even the strongest of people experience caregiver burdens. Before judging the adult son who occasionally raises his voice with his 94-year-old mother, walk in his shoes.

Before promulgating rumors about how the patient’s family rarely comes to the hospital and speculating about whether they care enough about the situation, recognize there is a chance the family has to work to support the patient’s hospitals bills.

Before assuming that the patient’s family is selecting continued aggressive measures for selfish or financial reasons, first try considering good intentions.

Finally, recognize caregiver burden and attend to your patients’ families. If you see the same family member accompanying your patient on every visit, there is a pretty good chance that one family member is carrying the heaviest caregiver load and is therefore susceptible to caregiver burnout.

If the caregiver looks disheveled, appears exhausted, is snappy, or talks about competing obligations within his or her own family, it’s a good time to talk about caregiver burnout. Have a list of cost-friendly resources and assistance on hand. Importantly, have access to a social worker who is skilled at addressing caregiver burnout or accessing resources that can address burnout.

Decision making sucks. Caregiving sucks. But my journey as a caregiver and a healthcare professional has taught me that just a little recognition and attention can go a long way in minimizing patients’ and families’ burdens.

We, as healthcare professionals, can communicate better in ways that can help minimize burdens. I provided several recommendations for healthcare professionals above, and I hope to see us implement them on a wide-scale.

-By Courtenay Bruce, J.D., M.A., assistant professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and director of Community Outreach in Ethics at Houston Methodist Hospital