One day everyone will be a patient or caregiver

”The only reason for time is so that everything doesn’t happen at once.” — Attributed to Albert Einstein.

Many of us live our lives thinking of time as a noun, remembering the past or projecting into the future. When the time we experience is a verb, the very present of our experience is colored by how we have built a past, certainly, but also as preparation for the future. It is a formidable job to truly capture that present.

Time as the noun, by remembering past experiences, is what attracted me to the Urban Zen Integrative Therapist (UZIT) program (www.urbanzen.org). I was drawn to the training by relating it to experiences from years back when I worked at Bellevue Hospital in New York City. My assignment then was in a research study of severely autistic preschool children. The team was composed of the Child Psychiatrist Stella Chess, Magda Campbell, a psychopharmologist, and from Bank Street College of Education, Elsbeth Pheiffer. You could not have found a more formidable group. Each was generous with her time, the case studies were illuminating, and the inspiration gained from being in that stimulating setting has lasted a lifetime.

Ms. Pheiffer was head of the special education program at Bank Street College while I was attending the “rival” school, Teachers College of Columbia University. This highly respected educator treated me as one of her own. She was encouraging and shared with me that she had found artists to be quite successful in working with the severely autistic. Her words and the instruction she gave offered me tools to effectively work with the nonverbal preschoolers of the inpatient program. This experience was one of the richest of my working life.

Once I stopped trying to relive that past experience, the information and instruction throughout the Urban Zen training has enriched my present life and introduced me to new concepts. As I began to project my life into the future, I thought I might volunteer at a hospital or with the Urban Zen program, itself.

One of the most important messages I have taken from the yearlong Urban Zen Integrative Therapist training is that one day everyone will be a patient or caregiver. Accidents, sudden illness, and chronic conditions do not discriminate and can strike individuals and families at any time. To secure the best possible treatment, it is important to plan for these inevitabilities with information and resources. Most of us, myself included, are not well enough prepared and can be taken advantage of or make hasty decisions during times of crisis. Of course it is difficult to think about confronting illness or injury during periods of optimal health, but it is during just those times we can best take preparatory actions.

Our healthcare system is increasingly complex and information gathering to ascertain patient rights can be difficult. According to Dr. Rock Brynner, a professor of Constitutional Law, there is help: a patient advocate.

What does a patient advocate actually do? Among their central functions is to be an accurate note taker, chronicling every stage of treatment and serving as a bridge between social workers, nurses, religious and spiritual guides. Most beneficial is helping to decipher and decode the mysteries of hospital billing, which seems to be written in an obscure foreign language. Advocates can also be experts in following the medical insurance trail to assure accuracy in payments and reimbursements to the patient. When the situation is possible, choosing a hospital is another formidable job where an advocate can help sort through multiple considerations: distance from the patient’s home, checking the record of hospital-born infections, family arrangements, and sleeping accommodations for spouse or family. Although a patient advocate must also be sensitive to divisions or any disturbances within families, their position is to first respect the patient.

An advocate knows that doctors are less tired in the morning and tend not to schedule weekend hours. When surgery is called for, the patient may not take this important information into consideration and here the advocate can step in and when possible, encourage early weekday morning surgeries.

Another important role is helping to prepare and coordinate legal documents. Living wills, and advance directives that include the patient’s wishes are becoming legally mandated in many states. The patient advocate is the rational one in times of stress and can speak objectively, without blame or judgment to the hospital staff and without being attached to outcome.

Regardless of the condition, all patients need to be cognizant of their legal rights and who is and who they would like to designate to act on their behalf. A durable medical power of attorney is a valuable tool that permits the assigned person to see the patient’s medical records, and if the patient desires, this could include the patient advocate.

Almost every hospital now has a patient advocacy office and a specific document called a Patients’ Bill of Rights. These documents are drawn up by hospital legal systems and often limit the hospital’s liability. Although well-meaning and certainly supportive, the individuals in these in hospital advocacy offices are hospital employees, with their first loyalty being to their employer. Having a knowledgeable advocate outside of the system has many benefits. Support can be found through individuals or agencies, and reading the abundance of books and articles on the topic of patient preparedness and advocacy. (http://www.patientadvocate.org/)

Although it is believed this will soon no longer be the case, as of now, no form of certification exists for this important role, and patient advocacy is primarily a voluntary occupation. Sarah Lawrence College in Bronxville, N.Y., has begun to offer a three-year graduate degree and there are smatterings of online programs. It is a new field, and caution is advised in finding an experienced advocate.

At a recent Urban Zen training we had the opportunity to meet a patient advocate and the person she was supporting. Respect between the two was obvious. By offering herself as a bridge between patient, family and medical system during a very difficult time, the advocate did not take the place of family, but helped to assuage their anxiety as well the patient’s. The patient shared with us that the support was especially beneficial when she was first diagnosed and that during the healing process, the advocate was invaluable in coordinating treatments. Even the simple act of making sure the patient was getting proper nutrients was gratefully acknowledged.

The benefits to the patient are difficult to describe in words. Whereas so often identity is diminished by our impersonal healthcare system, the advocate’s acknowledgment of an individual at life’s crossroads helps to create a powerful bond of deep-seated respect. Bringing dignity and respecting the personhood of a patient can go miles towards their comfort and perhaps, even healing.

My hope is that the role of patient advocate grows and is legitimized as integral to healthcare and essential for families in time of crisis.

Grateful acknowledgement to Rock Brenner for providing source notes for this article.