Effectively Representing a Hospitalized Loved One: Preparing for Your Walk-on Role

By Bart Windrum

The likelihood that each of us will, one day, experience the hospitalization of a loved one is almost inevitable. I experienced two end of life hospitalizations. Each was unexpected; each lasted between two and three weeks. Each involved my parents, and each showed my patient-family how under prepared we were—despite being "advance-planned" and presenting as a cohesive family unit.

When unprepared, all we can do is accompany our loved one, passively witnessing whatever transpires from a place of disorientation and disempowerment. If, on the other hand, we take the time to prepare for the inevitable and consider what hospitalization actually entails, we can positively influence our experience and our loved one's recovery. We can empower ourselves to effectively represent our loved one during hospitalization.

It will take some doing, for there is much to understand. This article focuses on orienting ourselves to the nature of hospitalizations, in order that we can learn how to do what we are called upon to do in our loved ones' interest when they are hospitalized.

Medicine and Hospitals, Then and Now

Centuries ago, medicine could not fix us and hospitals were places to avoid. By the mid-20th century, medicine offered a potpourri of bodily repair services. These miraculous interventions work, and hospitals remain the places we go to get the most serious conditions fixed. Sometimes we even go to hospitals to die, even though arguably better alternatives exist for the asking and taking.

Present day hospitals are complex environments, for a mind-bending array of reasons. We (the lay public) are becoming increasingly aware of some of the reasons, as occasional cases rise to national prominence, and stories appear in mass media. Hospitals are places where medicine, technology, law, finance, and ethics intermingle, often with conflicting interests.

Complexity has resulted in a default requirement that is acknowledged but remains unexplained: family members must represent their hospitalized loved one. The evidence for this is ample:

• Hospitals advise us to accompany loved ones, even to remain with them 24/7
• A new legal realm called Advance Directives has emerged, focusing on constructing a legally binding framework for proclaiming our medical desires and ensuring they are met
• Media coverage of systemic problems is seemingly unending (including stories of hospital-borne, treatment-resistant infections, and medical errors both small and large)
• Guidance for actually how to represent a hospitalized loved one is mostly absent, despite widespread notice that hospitalized patients ought to be accompanied by an advocate.

Managing hospitalization is a huge topic: I've written a book focusing on it, and mine is one of four books I consider required reading to thoroughly prepare for the range of experiences we may encounter. So let's chunk it down into manageable portions, beginning with your role as the personal representative of your hospitalized loved one.

Why Personal Representation is Important

Let's start by acknowledging why personal representation during hospitalization is important:

• Our loved one's care can be compromised during hospitalization due to the nature of service within hospitals
• Ethical choices can loom large when definitions of what constitutes life and living get stretched due to medicine's technological capabilities
• As representatives, we advocate for our loved one's interests; we serve as proxies for people when they cannot speak for themselves, or when workers in the system cannot, or choose not to, hear them
• This role is serious—our loved one's well-being and even life are at stake

Because the medical world asks for (and essentially requires) personal representation, we need to know how to function in the role. Being an effective personal representative requires guidance.

Clarifying our Thinking and Language

The best initial preparation is to clarify some aspects of hospitalization that typically go unexamined. The words and definitions below actually describe a list of things that effective personal representation requires we understand:

• "Power Documents" is my phrase for the 5 essential legal documents without which we leave ourselves at significant risk: Durable Medical Power of Attorney, HIPAA Authorization and Release, Advance Directive (Living Will), the (optional) Do Not Resuscitate form, and the Durable Financial Power of Attorney. With these documents in effect and in our possession when we need them, we have all the legal power we need behind us for any decisions we make (under the documents' jurisdiction).
• "Care" is not care; it's bodily repair. Hospitals provide bodily repair services under the direction of independent physician-scientists, and monitoring by nurses and/or technicians on routine schedules. These services are distinct from care as we typically conceive of, receive, and deliver it within our homes. Bodily repair services are highly skilled and vital—and so is the more intangible care, for the beneficial effect it has on the bedridden and their personal representatives.
• "Discontinuity of Care" is the industry name given to what we experience as lapses and gaps in medical treatment. It is increasingly acknowledged as a major source of medical error and patient-family discontent.
• "Treatment group" is my new phrase for the traditionally named "care team." If care is actually bodily repair, and if gaps occur due to lack of cohesion, communication, and leadership amongst providers, then treatment group more accurately conveys the nature of the services we receive.
• "Patient-family" is the unit that requires caring attention in the hospital. The patient for obvious reasons: s/he's ailing and bedridden. The family because family members are now required participants in support of the patient.
• Patient-families need "Forecasting." Forecasting (a term introduced to me by Diann Uustal, clinical ethicist and R.N.) means advance guidance about how things work, how events unfold, and when decisions will likely need to be made during the hospitalization. Prognoses, that is, educated guesses about our loved one's physical condition, are a subset of forecasting.
• "Intrinsic and Extrinsic Shock" are what vulnerable, hospitalized patient-families are subject to. Intrinsic shock goes with the territory and is nobody's fault. Extrinsic shock is what patient-families experience when things go awry that ought not go awry. These are typically avoidable snafus that would not occur with forecasting or in the absence of discontinuity.
• And, in the case of end of life, "communion" is what's at stake: transient opportunities to deeply connect, several last times, with our loved one, and to receive explicit treatment direction from them, made in and for these moments.

These terms and phrases together represent core aspects that we will navigate during hospitalizations, for a real-life critical hospitalization includes elements that tax and stretch our capabilities. At their most poignant, our very beings are stretched due to inherent conflicts among medical, social, financial, moral, legal, and ethical concerns.

Before walking into our roles as personal representatives, we can prepare ourselves first by orienting ourselves to the nature of modern hospitalizations. We need to see clearly in order to personally manifest, and stimulate providers to manifest, the love our loved one needs during these most stressful times.

 

Bart Windrum is the author of Notes From the Waiting Room: Managing a Loved One's End of Life Hospitalization, How to Efficiently Settle the Family Estate, and the reform initiative "The Option to Die in PEACE (Patient Ethical Alternative Care Elective)".
Copyright © 2008 by Bart WIndrum

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