Fault Lines And Frontiers In Person-Centered, Long Term Care: Part 2

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V. Tellis-Nayak

V. Tellis-Nayak

When did you last notice a doctor sitting at the bedside, totally absorbed listening to the patient’s story? Danielle Ofri, MD, recalls bygone days whenever she talks with admiration of her mentors. They were white, male doctors in starched shirts and bow ties, schooled in lily white settings.

“Their old-fashioned doctoring made them approach the bedside as a sacred act,” Ofri says. “They examined each patient—whether a homeless Ecuadorian alcoholic, a veiled Muslim woman, or a visiting Swiss diplomat—with a thoroughness that in itself exuded respect.”

She speaks of Dr. Spenser, blustering in style but who coached young medics-to-be on compassion. He would drag a metal stool to the exam table, swivel it down to the lowest level, and sit on it with his head level to the exam table. Then he would say, “Whenever you speak to a patient, you seat yourself at the patient’s level or lower. You never hover over them high and mighty. They are the ones who are sick. They run the interview, not you.”

Eclipse Of The Art Of Relating
A kind caregiver whose eyes bespeak concern, whose touch conveys compassion, and whose words reassure, does more than just communicate; kindness and caring speed up recovery and hasten healing more surely than does the cold potency of the formulary.

Institutional medicine is quick to report that 70 percent of the avoidable, massive acute-care damage inflicted on patients is caused by miscommunication. Such analysis is typical of the biomedical mindset—it skirts the real issue; it begs the question.

Advances in communication make the world flatter and smaller, and social contact easier than ever. Why then is miscommunication epidemic in health care? The answer is obvious.

The communication revolution helps us to connect easily, but it does not help us to relate meaningfully. Relations are the soul of health care. But human contact is turning cold and sterile.

The Art Of Listening
Surveys of residents, families, and staff are commonplace in long term care (LTC). But the art of listening is in eclipse. Many policies, regulations, and programs are elegantly designed and aimed to benefit LTC residents. But we sadly watch many of these residents flicker, flame out, or linger on as cooling embers. Too many LTC initiatives are born of logic that is not always in sync with what beneficiaries want and need.

Regrettably, LTC discourse on culture-change is loud in tone, light in theory, and lax in its phraseology. My disappointment sparked a research interest, which in turn resulted in a book I co-authored with my wife, Mary Tellis-Nayak: “Return of Compassion to Healthcare.” Importantly, we reviewed what we had heard from residents, family, and staff in annual surveys—several million respondents over 15 years.

We asked, “Who is the person in person-centered care?” All lines of inquiry converged on the humanist axiom, which we summarized as follows: Five primal yearnings make us human and endow us our inalienable rights: to be, to become, to belong, to be our best, to reach beyond.

History’s March Toward Human Rights
These five “Bs” are what make us human. However, many societies throughout history have not recognized select groups as humans, including women, children, slaves, and ethnic outsiders.

Our forebears paid a heavy price in blood and treasure before reaching a consensus about the humanity that is our ultimate birthright. We believe the five Bs distill the content and spirit that fueled history’s major upheavals—those whose intent was to clarify and ensure that birthright:

  • Milestones in democracy: Magna Carta, Emancipation Proclamation, Women’s Suffrage.
  • Revolutions: American (“life, liberty, happiness”); French (liberty, equality, fraternity); Russian (You have “nothing to lose but your chains”).
  • Religions: Christianity (We are “made in the image and likeness of God”; “People of God”); Hinduism (“Atman is Brahman”); Islam (“All the born are born with the God-given nature”).
  • Caregiver oath: “First, do no harm.”
  • Humanist precept: Maslow, Frankl, Adler (“Our humanity is the measure in all things”).
  • International consensus: 193 signatories to the United Nations declaration of human rights.

The five Bs encapsulate the primal yearnings intrinsic to a person, whatever the context or circumstance. We take inspiration from the great humanitarian, Albert Einstein, who advised, “Remember your humanity, and forget the rest.” We propose that the five Bs serve as a preliminary touchstone for new understanding of human yearnings—especially of those under our care.

The skeletal outline that follows narrowly focuses on LTC residents and is meant to illustrate how the five Bs could be a “GPS” that pinpoints our person-centered destination and guides us on an assured route.

Five Self-Evident, Inalienable Rights

  1. To Be: To live in a risk-free setting, safe, without fear of injury from medication error, abuse, under-staffing, inadequate infection control, substandard wound care. To live without pain and to die in dignity.
  2. To Become: To be respected for your unique self; to participate in care decisions and day-to-day choices; to have ready access to all your health records. To maintain self-reliance and maximize self-care.
  3. To Belong: To lead a fulfilling social life, to bond with caregivers and to be mutually supportive of fellow residents; to stay connected to family, children, animals, nature, and the outside world, real and virtual.
  4. To Be Your Best: To grow mentally and spiritually as a person; to use your skills to advise, to teach, to mentor; to display your talent and use it to entertain fellow residents; to
    find meaning in suffering, and to make disabilities and illness a teacher.
  5. To Reach Beyond: To find joy in serving others, to be part of resident council, of an advisory group that plans menus; to comfort those in pain and in hospice; to be a foster grandparent.

Heed what the residents, families, and staff say, and what they yearn for. Always honor their humanity. That will keep you on the high road in pursuit of life, liberty, and happiness.

V. Tellis-Nayak, PhD, is senior research advisor at NRC Health, Lincoln, Neb. He has been a university professor, whose scholarly work has been published in national and international professional journals. He has conducted research in the United States and abroad, and his major findings have reached a wider public through his writings in trade magazines. He can be contacted at vtellisn@gmail.com.

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