‘Is anyone here in hospice? My dad is dying at home in hospice and I don't really understand the process and don't know what's happening other than watching him die is incredibly painful.
Thanks for any help, feel free to DM me.’
There are numerous such posts on Facebook, in various groups like EMDOCS, Physician Mom’s Group, and Indy Physician Women. The posts are by physicians seeking a group member that works in a certain emergency department or intensive care unit or outpatient clinic. Some posts request to speak to someone who can provide information about a loved one. Some request assistance with arranging care because of “trouble navigating the process”. Many are looking for a “friendly face” or “someone to check in” on a patient. These posts seemed to multiply early in the pandemic when visitors weren’t allowed.
Why? The answer is two words, which many of you will have a negative gut reaction towards: Patient experience.
I’ve always had a sense of unease about these posts. First, because one can tread dangerously close to violating HIPAA. Second, because it seems to imply that we give certain patients greater attention or better care because of the patient’s association with a physician family member or friend. Nevertheless, the posts come from a place of genuine concern; the author of the post wants to ensure that their loved one has a good patient experience. These Facebook posts reaffirm what I have learned by working in the affluent Indianapolis suburbs: Physicians have an intuitive understanding of patient experience, and they can be its choosiest connoisseurs.
So what does a good patient experience involve? We have an intuitive feeling, but how do you explain it to others? Justin Morgenstern wrote a great summary of a study by Graham et al that examined the components of patient experience. The title of the study is based on a quote attributed to Theodore Roosevelt: “People don't care how much you know until they know how much you care.” The authors reviewed twenty-two qualitative studies and identified five main themes relating to patient experience: Communication needs, emotional needs, competent care needs, waiting needs, physical and environmental needs.
These themes will likely be intuitive to those among us who have spent time in the emergency department as a patient, or the family member or friend of a patient. We do not expect competence in regard to patient experience; we expect excellence. We want our loved ones seen quickly by a competent physician in a clean facility. We want to be kept informed, and many want to be involved in shared decision-making. But, perhaps most importantly, we expect the physician to demonstrate concern and compassion. I will note that while physician patients and physician family members have high expectations regarding patient experience, they also frequently understand the obstacles to a good patient experience and have great appreciation for our efforts. Even members of other specialties understand that we often balance caring for a critically ill patient with a full waiting room. They understand that our efforts can be hindered by inadequate staffing or long wait times.
So why do many physicians have a negative gut reaction to the words “patient experience”? I hope that you will read my follow-up post, “How I Learned to Stop Worrying and Love Patient Experience”.
- Courtney Soley, MD
