'Now . . . I Realize the Healing Power of a Good Nurse'

Michelle Mayer with daughter Amelia Stainbach on a beach she loved.
Michelle Mayer with daughter Amelia Stainbach on a beach she loved. (Family Photo)
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Tuesday, October 21, 2008

A little more than a week before she died, Michelle Mayer posted the following entry about the doctor-patient relationship on her blog, http://diaryofadyingmom.blogspot.com , under the heading "Confessions of a Former Nurse":

I often wonder what doctors think about while sitting on their swivel chairs across from me. Do I frighten them? I am their peer: young, educated, a successful academic, a mother, a wife. I'm not one of "those people," who drank, smoked, ate poorly, etc. If it could happen to me, it could happen to them. Do I remind them that they are not immune to disease and death by virtue of their academic pedigrees and thick wallets?

Or do I remind them of their impotence? They cannot cure or even control my disease. For certain scleroderma-related problems, like renal crisis and pulmonary hypertension, doctors can offer patients life-saving treatments. But for many of scleroderma's manifestations, there is little doctors can do to ease diseased-associated pain or organ malfunction. And I happen to be one of those patients for whom no useful treatments are available. Along with me, my doctors are often simply waiting to see what course my disease will follow: fast and furious or slow and steady.

But they aren't impotent. Yes, I am going to die long before I become eligible for AARP membership. For years, my body fell apart little by little. My doctors monitored my disease progression, tweaked medicines to make me more comfortable, and stood at the ready to pull out their arsenal of "big guns" when/if I should ever decide that I was desperate enough to try anything. The "good" doctors knew me as a person -- a professor fond of teaching and research, a wife, a mother of two young children, an amateur chef and seamstress, a gardener -- and, by doing so, they gained my trust. To the "so-so" doctors I was just another patient in a long line of many. One refused to call me by my first name despite my repeated requests. I remained "Dr. Mayer" to him until I decided I needed to be on a first-name basis with my doctor.

I suppose that health-care providers find it difficult to establish personal relationships. Keeping emotional distance makes it easier to bear the inevitability of patient's demise, especially in life-threatening diseases like scleroderma. Some doctors think it is unprofessional. Others buy into the idea that "Doctors Cure; Nurses Care," absolving themselves of their duty to their patient, the patient's illness, and how it affects their lives.

The inpatient hospice is a small, six-bed facility, which allows patients and staff time to get to know each other a little on this important last leg of life's journey. Nearly every day I have a five- to 10-minute conversation with one of my nurses and learn a little bit about them. They listen to my fears, they offer reassurance, and they share their experiences of helping people through the dying process. They cradle me and kiss my hair, they sit on my bed and talk, they see me as a person, not a patient.

My worst hours are between midnight and 2 when a nurse named Mary is usually on duty. I awake sometime during those hours drenched in sweat and shivering from head to toe. An angelic figure appearing out of the dark, she dries me off and changes my linens and puts me back to sleep. "You are so caring, Mary," I told her one night. "You are easy to love," she answered, "I pray for you every day."

I used to be a nurse. I was attracted to the field because I was social and, honestly, young girls in Northeast Philly didn't set their career ambitions too high. Surrounded by so many loving nurses here, I have started to think back to my nursing days. Sometimes I wonder if I was a bad provider. Did I dismiss my patients' concerns? Was I rude and uncaring? Was I indifferent to their suffering?

When I was in nursing school, I worked on an adult medical unit. Most of our patients were receiving chemotherapy or were early victims of the AIDS epidemic. I spent most of my shifts dressing bedsores that developed from the combination of being chronically ill and bedridden. I can only assume the sores were incredibly painful, though most of these patients had grown used to the unrelenting consequences of their disease.

Now I think to myself, "Would it have been so bad to cry?" or to say, "This is not fair." I wish that I had had the maturity and strength to look these patients in the eye, hold their hands and say, "I'm sorry for what you are going through." I wish I had pulled up a chair and given them the opportunity to share their grief and anger and sadness. But I was too young and stupid to know how awful it is to be sick and suffering and facing your mortality. I try and remember that when I experience the callousness of providers. I try to remind myself that they don't understand or know what to say, so they say nothing. Just like I did 16 years ago.

Now on the receiving end of care I realize the healing power of a good nurse. I wish I had seen it back in my younger days and used it more effectively.

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