I was six, one brother four, and the other just 18 months old when our mother and protector died of cancer.
We were not permitted to visit the hospital and my last memory is of waving to a window. No nothing, no closure or explanations, just gone.
Long years of wondering, pain and a feeling of abandonment might have been avoided if only….
In being with dying, we arrive at a natural crucible of what it means to love and be loved. And we can ask ourselves this: Knowing that death is inevitable, what is most precious today?
~ Joan Halifax
One of the most important messages I have taken from my Urban Zen Integrative Therapist training (UZIT), founded by Donna Karan, Rodney Yee and Colleen Saidman, is that one day everyone will, most likely, be a patient or caregiver.
Accidents, sudden illness and chronic conditions don’t discriminate and can strike individuals and families at any time.
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’s difficult to think about confronting illness or injury during periods of optimal health, but it’s during just those times we can best take preparatory actions.
Our healthcare system is increasingly complex and information gathering to 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 Patient’s Bill of Rights. These documents are drawn up by hospital legal systems and often limit the hospital’s liability.
Having a knowledgeable advocate outside of the system has many benefits.
Support can be found through individuals or agencies (such as www.patientadvocate.org) and reading the abundance of books and articles on the topic of patient preparedness and advocacy.
At a 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.
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Ed: Lynn Hasselberger