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DOING WHAT'S RIGHT: THE ETHICS OF NURSING

Nursing home ethics: Inside out

by Bethel Ann Powers

We wear our clothing right side out.
When it is inside out we see the seams, the ragged edges,
Loose threads and tangled imperfections that hold it all together.
So life, viewed from the right side out,
Is held together by the seams and ragged edges of experience,
With what we know of right and good reflected in the mirror of our
imperfections.
Thus the task before us is to view life inside out more often
To better remember what it is we hope to see when we put it on right side out.

—Bethel Ann Powers, April 2005

What counts as an ethical matter? We are used to examining values and principles that guide decisions in problematic situations. However, the moral elements of the usual, familiar activities of our everyday lives generally escape such scrutiny, not because we do not care, but because we see what we manage naturally as a matter of course as settled, unproblematic and under control.

If we were to reflect deeply on the ethical implications of everything we do as we do it, life’s business would suffer and our work would never get done. Yet, daily experience is laden with taken-for-granted moral aspects that we consider without much thinking and act upon out of habit. The following sequence of events in the life of one family is common to many. Turned inside out, however, it is an invitation to consider, from an ethical perspective, the substructure of ordinary things.

Betty Cornell, the author’s mother

September 2002. We are holding my mother in our arms as she sobs, “I never thought you would do this to me.” She has been clear and vocal about her preference for death over life in a nursing home. But the Alzheimer’s disease that is robbing her of memory, speech and ability to live independently is a ruthless adversary. It gives no quarter.

What is it like to override the wishes of a parent who does not want to live in a nursing home? The moral issue involves competing goods. That is, it is good to respect a parent’s wishes but, at the same time, it is good to ensure his or her well-being. We may decide that circumstances are such that overcoming a loved one’s resistance is the right thing to do. Others may applaud the decision, and there may even be an element of relief. But doing right does not always result in feeling good about a situation.

Emotions of family members range from regretful acceptance or resignation to depression, guilt, shame and a sense of failure. The decision may cause family discord. The loved one may feel anger, fear, confusion and a sense of abandonment. How staff members assess family dynamics and respond to individuals sets the tone for relationships across the nursing home stay.

December 2002. Mother’s holiday letter to family and friends is accompanied by a collage of photos we have taken of her in the chapel, at the ice cream parlor, by the fountain in the courtyard, on a hayride. ... She is laughing and smiling. Her memory for the past is like a fleeting shadow, as she lives mainly in the present. Her contemporaries congratulate her on a successful retirement to a nice place that is close to her daughter.

What is the nursing home’s internal ethical climate? Written statements of a nursing home’s mission, goals and business practices and policies relating to resident-focused issues articulate the principles and values that officially define institutional moral agency. However, living statements are truer indicators of how principles and values are prioritized and the consistency with which they influence ordinary, everyday lives of residents, families and personnel at every level of the organization.

Today’s emphasis is on creating nursing home environments where residents can discover a joyful abundance of life, be well cared for in body and in spirit, forge meaningful relationships with others and participate, as able, with family members and a multiprofessional team in decisions affecting their care. Many of us may know of nursing homes that are not like that. And it is not how most people imagine them to be. But it is what they can be like and as they should be.

Betty Cornell

May 2003. The park next to the nursing home is a riot of spring flowers, and the warm air finally has replaced winter’s biting cold. We take Mother in a wheelchair to smell the lilacs and to observe the artistry of the pansy bed. We take more photos. Mother’s interest, however, is in the dogs being walked by passersby who kindly introduce her to their pets. Her hip, fractured earlier in a fall, has healed, but she cannot walk without assistance.

What values underlie concerns about the physical safety of older adults? Endeavoring to see that another comes to no harm and avoiding negligence that leads to harm—the ethical principle of nonmaleficence—guide actions aimed at preventing misadventures, such as falls. However, people can be harmed in more than just physical ways.

When physical safety becomes the dominant concern, other values often are called into question, such as beliefs about respect for the right of people to choose how to manage their own lives—the ethical principle of autonomy. Restraint minimization programs in nursing homes recognize the need to balance residents’ rights to dignity and personal freedom against risk factors associated with physical injuries. Since no setting is risk-free, this situation can pose dilemmas when the ethical choice is between broken bones and broken spirits.

December 2003. Over time, the deaths of many of her contemporaries have shrunk Mother’s mailing list to slightly under 100. We recognize names and addresses from years of maintaining these connections for her as she became progressively unable to do so for herself. Her delight in receiving mail is unabated. But this year’s holiday letter contains a suggestion that writers tell us who they are so that we can become the conduit of memories to which disease denies her access.

What is the external ethical climate of a nursing home in terms of its relationship with the local community? Nursing home surveys and report-card ratings reflect societal values and beliefs about minimum criteria for quality of care in these settings. But quality of community involvement, as a counterbalance to the isolating effects of institutionalization, is not integral to those measures. Maintaining ties of nursing home residents to the world outside their walls may be viewed as a role for family members or a function of a facility’s activities and/or public relations departments.

It could be argued, however, that a report-card rating that holds both nursing homes and community stakeholders accountable by measuring how well they draw nursing home residents into the mainstream of public life would better demonstrate their shared moral obligation.

September 2004. We are holding my mother in our arms as her breathing gently slows and stops ... forever. As if orchestrated by an unseen hand, the sun sets as the music playing at her bedside ends with “The Lord’s Prayer.” Her eyes are closed, her face peaceful. The witnessing of spirits’ entries into and departures from this world is a privilege, for these are holy times. Alerting the nursing home staff can wait. “No need to hurry,” I say, but the nurse in me says, “Look at your watch and record the hour.”

What is a good death? People respond differently and with varying emphases on both the dynamics of the dying process as well as the existential meaning death has for them, as informed by cultural experience and spiritual or philosophical beliefs. Certainly, individuals have major concerns about the adequacy of physical-comfort measures to ease the work of dying, including access to hospice care, prevention of pain and symptom control. Advance directives further help guide the clinical management of death by relieving specific uncertainties about how people who cannot speak for themselves wish to die.

It is easy to become preoccupied with these kinds of details. However, an ethical stance demands equal attentiveness to emotional and spiritual elements of the experience that offer support and consolation to families and lend dignity to this final life passage.

Epilogue. Betty Cornell (1917-2004) was a graduate of the Philadelphia Osteopathic Hospital School of Nursing (Class of 1939). She attended the University of Pittsburgh with encouragement from Annie W. Goodrich, spearheader of collegiate-based nursing education in America, whose support was a cherished lifelong memory. She left a legacy of correspondence with her patients and their families sustained over more than 60 years.

We dishonor older people when we fail to see them in the light of who they are, not as they may come to us, frail of mind and body, but as they are on life’s stage, in terms of the meaning and purpose of their lives. We should ask ourselves: How do we wish to be remembered?

She took the familiar words to heart. ...

“I solemnly pledge myself before God and in the presence of this assembly, to pass my life in purity and to practice my profession faithfully.* She was a take-charge professional.

“I will abstain from whatever is deleterious and mischievous, ...”* “I know what you need.” (“and will not take or knowingly administer any harmful drug.”* “You are safe in my hands.”

“I will do all in my power to maintain and elevate the standard of my profession.”* Her no-nonsense way could calm the fretful, give hope to the fearful or take on the cantankerous. “and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling.”* She was a keeper of weakly whispered secrets, an angel to the dying, a member of the family to the living.

“With loyalty will I endeavor to aid the physician, in his work, and devote myself to the welfare of those committed to my care.”* “Don’t worry. I’m here. I won’t leave you.”

In her last days, she continued to select “patients” to care for and supervised the work of nursing home staff. And do not doubt that echoing throughout eternity will be a confident voice declaring: “Don’t worry. I’m a nurse.” RNL

* From The Nightingale Pledge, written in 1893 by Lystra Gretter

Bethel Ann Powers, RN, PhD, is professor of nursing and associate director, Center for Clinical Research on Aging at the University of Rochester, Rochester, N.Y. Powers is the author of Nursing Home Ethics: Everyday Issues Affecting Residents with Dementia (Springer), which received the 2004 Book of the Year Award from the American Journal of Nursing.