ENTITLEMENT: THE OVERLOOKED DIMENSION OF PATIENT ENGAGEMENT

By Jessie Gruman

April 2, 2014

“I know the ropes at the VA…. I’ll pick up the phone in a heartbeat and call my senator and get what I need right away. A lot of guys aren’t like that.” – Max Gruzen, PTSD patient, Vietnam veteran [New York Times]

So this is what it means to be an “engaged” patient in the VA system today. You have to know a senator who will intervene on your behalf, to give your health care a priority higher than his other constituents and other senators’ constituents from all over the country. Just to get what you need: even if only an appointment with a primary care physician or specialist.

I read this quote with deep discomfort, the same way I react when I hear some hospital executive who is not receiving fast enough attention at his hospital’s security desk snap, “Young lady, do you know who I am?” Or the same uneasiness I feel when I take advantage of my husband’s staff ID at the medical center where he works so I can jump the line of waiting patients in the emergency department.

I hate seeing this. Even more, I hate participating in it. But most of all, I hate that I am treated in a health care system where even those who are most accountable for the quality of the care it provides (the institutional leaders) can’t trust the institution or the professionals who work there to routinely and uniformly deliver excellent care.

Those of us who believe we are special – that some privilege gives us the right to receive care that exceeds the routine – don’t operate in the belief that all care delivered at this hospital is excellent. We don’t believe that every patient treated here receives the best care the staff can deliver. We know that isn’t true and we don’t even bother to pretend it is.

I don’t know what kind of rainbow I’ve been gazing at, but I liked it better when I thought that the kind of patient engagement that was going to make a difference to my health outcomes was something I could significantly influence, as long as I possess and apply the right knowledge, skills and motivation. You know, where each engaged patient – each veteran, for example – would gather up his or her energy and focus on finding out how to get good care and then follow through on recommendations like organizing all those appointments or taking the pills as directed or losing the ten pounds before Christmas.

The public increasingly recognizes that health care demands more of our attention and skills as greater responsibility for care is shifted onto us and our families. While we will always face stiff challenges from a system with scant responsiveness to our individual needs, those of us committed to patient engagement believe that our participation can make a difference to our health outcomes.

And then along comes this story suggesting that what veterans really need in order to get effective health care is a good relationship with a senator.

Patient engagement is a critical issue right now because our ability to benefit from our care depends so profoundly on our individual abilities to take on complex and unfamiliar tasks while our capacity to perform them varies greatly. Any assumptions about the equity of health care are called into question when so many responsibilities for our care fall to us.

Our individual deficits and weaknesses, e.g. health literacy, education or economic status, already undermine our ability to fully benefit from the medications we take, the devices we need to master and the self-monitoring tasks we must perform. If you are ill already or you have to manage a complex chronic condition but struggle with reading and numbers, or if you find yourself coordinating your care by hand-carrying all your notes and tests from doctor to doctor, you are already significantly disadvantaged in your effort to get the most out of your health care. Relying on indicators of privilege or access to power also signals that, over and above changing our own behavior, the biggest challenge of patient engagement is to shape the system so it facilitates, guides and supports the actions of patients and family members.

Only with considerable work will we get to the point where all of us (patients, clinicians and administrators) believe that the care delivered by our clinicians at our hospitals is uniformly excellent, that the needs of each one of us who walks in the door are treated with similar haste and attention.

Until then, those who feel entitled to better care because of who they know or the position they hold will not only make that erroneous claim but will also continue to benefit from a system that has no problem admitting that it delivers better care to those with connections than to those without.

The rest of us should be ready to search for our own pet senator or lofty hospital board member if we want to find good health care and make the most of it.

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.