Penny Cates RN, BSN, MSCC, CLCP, LNCC, CNLCP,

CCM

Research in Life Care Planning

History of Research

• History of Research • History of Research in the United States • Research in Nursing (Remember Florence?) • Research in Life Care Planning

History of Research

• Has been dated back as early as 500B.C.

• 1747 James Lind Scurvy Trial “Treatise on Scurvy”

• Considered the first physician to conduct a controlled clinical trial. He wrote about it in detail. He was a surgeon on a ship and was appalled by the high mortality rate of scurvy. He found the cure of citrus, however it was 50 years before lime juice was made a normal ration on ships

• 1800 First Placebo used • 1900 Informed Consent was discussed

• 1943 First Double Blind

Controlled Trial • 1946 First Randomized

Curative Trial • 1947 Nuremberg Code –

Voluntary Involvement - (Evolved from Nazi Medical War Crimes - 1939–1945)

• 1962 Kefauver-Harris amendments Started Federal Oversight of Trials

• 1964 The Helsinki Declaration (updates occasionally)

History of Research in the United States U.S. Research Universities were built in the 18th & 19th Century

• Yale, New Haven, CT 1701 • UNC Chapel Hill 1789 • University of Michigan 1817 • University of Virginia 1819 • Wake Forest University, Winston

Salem, NC 1834 • Duke University, Trinity, NC 1838 • Northwestern University, Evanston IL

1851

• University of Maryland, College Park, MD 1856

• Cornell University, Ithaca, NY 1865

• John’s Hopkins University 1876 • Stanford University, CA 1885 • NC State University 1887 • UNC Greensboro 1891 • Appalachian State University, NC

1899

1850 First Mortality Schedules in U.S. a Mortality Schedules are a census’ that includes people who died between June 1st through May 31st in the year prior to the federal census. (Were available for years: 1850, 1860, 1870, 1880, & 1885)

• Gathered demographic information such as:

• Name, age, place of birth, parent’s names

• Manner of death when known • Date of death, place of death • Occupation • Geography by census maps

1850 Guilford County, NC Mortality Schedule

1910 Death Certificates

• Name and maiden name if female. Single, married, widowed, or divorced

• Age at death, cause of death, Date of death and witnesses

• Name/address of informant • Name of parents • Occupation and name of employer • Signature of attending physician • Date and place of burial or cremation • Details about length of illness • Where the individual was born, lived and died • Whether the individual was married

Emergence of Death Certificates following Mortality Schedules

Prior to Birth Indexes & Death Certificates, unless captured in church records, vital records were occasionally lost or destroyed by fires.

1910 Death Certificates became standard across the United States. They included information that added to the research already being conducted throughout the U.S. Information being gathered included:

19th Century Diagnostic Label Interpretation Treatment Options

Dropsy Edema/swelling – Heart failure but could be used to denote swelling for other reasons in 19th century. One treatment for dropsy was bloodletting either by venesection (phlebotomy) or by leeches.

Treatment options for Congestive Heart Failure (CHF) have evolved since the 19th century to include better diagnosis and treatment options including medication and surgery for valve replacement when needed.

Consumption Tuberculosis: an infectious bacterial disease characterized by the growth of nodules (tubercles) in the tissues, especially the lungs.

Reached epidemic proportions in 18th & 19th centuries in Europe & North America.

1865 Jean-Antoine Villemin studied transmissibility of Mycobacterium tuberculosis infection.

1882 Identification of tubercle bacillus as etiologic agent by Robert Koch

1907 Clemens von Pirquet developed the tuberculin skin test

1910 Clemens von Pirquet used his test to demonstrate latent tuberculous infection in asymptomatic children

1908-1921 Bacillus Calmette-Guerin (BCG) developed for Tuberculosis

1944 Streptomycin (antibiotic) discovered.

1952 Isoniazid (antibiotic) discovered.

19th Century Diagnostic Label Interpretation Treatment Options

Typhoid Typhoid fever: Serious disease spread by contaminated food and water. Symptoms of typhoid included: Lasting high fevers, weakness, stomach pains, headache, and loss of appetite. Some patients have constipation, and some have a rash. Internal bleeding leading to death.

1838 William Budd noted Typhus being transmitted through feces into drinking water.

1880 Karl Joseph Eberth described the

bacillus

1884 Georg Gaffky named bacillus Eberthella typhi which is known today Salmonella enterica.

1896 First vaccine for typhoid by

Almroth Edward Wright introduced for military use.

Throughout 20th century, Typhoid fever decreased in incidence due to increased hygiene and introduction of vaccinations.

Measles (Rubeola) Symptoms: Fever (up to 104 or higher), cough, and rash. Spread through the air. Can develop 1-2 weeks after exposure. Supportive care

1757 Francis Home (Scottish physician) demonstrated measles is caused by an infectious agent in blood of patients

1912 Measles became a nationally notifiable disease in the US requiring US healthcare providers and laboratories to report all diagnosed cases. In the first decade of reporting, an average of 6,000 measle related deaths were reported each year.

1963 Vaccination became available

Nursing Research

• Nursing Research was documented as early as the 19th century with Florence Nightingale.

• Born May 12, 1820, Florence, Italy • Died August 13, 1910 Mayfair, London • Florence had a classical education in mathematics,

German, French & Italian. • Born into privilege, she turned down a marriage proposal

because she was called to nursing. She went to nursing school against her parent’s wishes.

• In the 19th century, nursing was seen as beneath her social standing.

Nursing Research

• Florence Nightingale reformed hospital nursing during the Crimean war in 1854.

• She was considered an authority on hospital administration and sanitation.

• In 1860, she established St. Thomas Hospital & The Nightingale Training School for Nurses.

• Florence was a researcher and statistician who kept records of the work she and her nursing team did with sanitation and how it impacted mortality. Below is one of the Coxcomb pie charts she developed.

Florence Nightingale’s Coxcomb Pie Chart

Florence Nightingale: The Lady With the Lamp

What we thought it looked like.

Examples of Nursing Research Organizations

•American Nurses Association (ANA) •Universities (i.e. UNCG, Duke School of Nursing, etc.) •National Institute for Nursing Research •Southern Nursing Research Society

Why Research Elements of the Life Care Plan?

• To increase the Life Care Planner’s knowledge level on subject

matter/diagnosis. • To increase quality of collaboration with providers. • To increase quality of interview with client. • To assist in developing LCP recommendations.

Why do Research for the Life Care Plan?

To increase the Life Care Planner’s knowledge level on subject matter/diagnosis.

• Research brings Life Care Planner up to date on new treatments and any new information gained through research. i.e. TBI, CTE, Alzheimer’s, SCI, etc.

• To increase the Life Care Planner’s awareness of long-term outcomes on activities of daily living (ADL’s), functional decline, secondary diagnoses, etc.

• To stay up to date on current recommendations for surveillance and monitoring throughout a client’s life expectancy on injury and disease processes.

Why do Research for the Life Care Plan?

To inform conversations with treating providers for more intelligent discussions.

• Collaborating with providers following research reviews allows for better questions and in depth responses.

• When the Life Care Planner’s questions are of such quality they truly cause collaboration, it occasionally provides a better treatment plan for the client if the best option isn’t already in place.

When is the most opportune time to procure research during the Life Care Planning process? (i.e. Think Nursing Process)

One of three phases (For the sake of this exercise, I’m keeping this to 3 phases, instead of 5) • Assessment phase • Diagnostic phase • Planning phase

Nursing Process

When is the most opportune time to procure research during the Life Care Planning process?

Assessment phase

• Reviewing medical records • Interview client

Nursing Process

When is the most opportune time to procure research during the Life Care Planning process?

Planning Phase

• Building recommendations • Costing tables

Nursing Process

When is the most opportune time to procure research during the Life Care Planning process?

The Life Care Planner will get the BEST outcome if they procure

their research during the ASSESSMENT phase. Once medical records have been reviewed but just prior to interviewing the

client. Occasionally, further research will need to be done after interviewing the client.

Nursing Process

When is the most opportune time to procure research during the Life Care Planning process?

• Procuring research prior to interviewing the client allows for a

better interview with quality questions and observations. • Procuring research prior to collaboration with providers allows

for better questions and answers between the Life Care Planner and provider.

Multi-discipline Approach to Researching Life Care Plans

• Research is authored by virtually every professional discipline for which Life Care Planner makes recommendations.

• When procuring research, more validity is brought by finding research authored by the discipline recommended. (i.e. Registered Nurse, Physical therapist, Occupational therapist, Speech therapist, Registered Dietitian, Medical Doctor, etc.)

Organizations that have Multi-disciplinary Research

• CINAHL (Nursing and Allied Health) • AOTA (The America Occupational Therapy Association) • APTA (American Physical Therapy Association) • Academy of Nutrition and Dietetics Foundation • NAHC (National Association for Home Care & Hospice) • NIH (National Institutes of Health) or pubmed • Google Scholar

What type of research does the Life Care Planner include in the Life Care Plan.

• Peer-reviewed articles from respected journals. (i.e. Peer-reviewed=Evaluation of scientific, academic, or professional work by others working in the same field.)

What type of research does the Life Care Planner include in the Life Care Plan.

• Statistically significant • The number of participants in the study should be statistically

significant. (i.e. More than a few participants. The more the better.)

• Research from respected Scientists.

What type of research does the Life Care Planner include in the Life Care Plan.

• Beware of hidden motives from the researcher in the study. If the study has too narrow of a focus, is monetized or funded by an unusual source or the article’s voice “sounds” one-sided, it may not be an objective article.

• Respected literature (books, etc.) • From professional organizations related to the field of study

you’re researching. (i.e. avoid a Women’s magazine if your researching TBI).

How to research significant Articles

Examples: • Initial search includes main diagnosis • Search articles that include secondary diagnosis when

applicable (i.e. neurogenic bowel/bladder, short bowel syndrome following bowel resection, etc. )

• Long term effects or late effects of diagnosis (i.e. Long term effects of spinal cord injury, traumatic brain injury, traumatic burns, scarlet fever - untreated strep throat), etc.

Ethical considerations when including resources in the Life Care Plan

• When possible, consider multiple sources of similar content (i.e. Diagnosis/symptoms/secondary diagnoses) to ensure the information is well-rounded

• Consider opposing opinions with an open mind before determining your course

• Consider the source of the content for conflicts of interest. Does it seem swayed too much to one side or the other? (Is it objective?)

Ethical considerations when including resources in the Life Care Plan

• Consider inconvenient revelations when doing research • Early timing of research during the LCP process makes it

easier to manage these revelations • Confirm the findings with further research • Share the findings • Write the LCP with knowledge of the findings.

Penny Cates RN, BSN, MSCC, CLCP, LNCC, CNLCP, CCM www.CatesConsultingGroup.com

pcates@CatesConsultingGroup.com

@PennyGCates @ConsultCates @LifeCarePlan

Resources

• Bhatt, D. (2010). Evolution of Clinical Research: A History Before and Beyond James Lind . Perspectives in Clinical Research, 2010(Jan-Mar), 1(1), 6-10. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149409/?report=printable.

• Cantelon, P. L. (2010). NINR: bringing science to life. Bethesda, MD: National Institute of Nursing Research.

• Daniel, T. M. (n.d.). History of Tuberculosis. Tuberculosis, 13-24. doi:10.1128/9781555818357.ch2

• Florence Nightingale's Rose Diagram (1858 – January 1859). (n.d.). Retrieved February 26, 2018, from http://www.historyofinformation.com/expanded.php?id=3815

• Marta, M. M. (2015). A Brief History Of The Evolution Of The Medical Research Article. Clujul Medical, 88(4), 567. doi:10.15386/cjmed-560

• McDonald, L. (1970, January 01). Florence Nightingale: A Research-Based Approach to Health, Healthcare and Hospital Safety. Retrieved February 26, 2018, from https://link.springer.com/chapter/10.1057/9781137355621_4

Resources

• Measles: History of Vaccines. (n.d.). Retrieved January 25, 2018, from https://www.historyofvaccines.org/content/articles/measles

• Nightingale's 'Coxcombs'. (n.d.). Retrieved February 26, 2018, from https://understandinguncertainty.org/coxcombs

• No. 1712: NIGHTINGALE'S GRAPH. (n.d.). Retrieved February 26, 2018, from https://www.uh.edu/engines/epi1712.htm

• PIO, J. G. (n.d.). History. Retrieved February 26, 2018, from https://www.census.gov/history/www/genealogy/other_resources/mortality_schedules.html

• Protections, O. F. (2016, March 18). Federal Policy for the Protection of Human Subjects ('Common Rule. Retrieved February 26, 2018, from https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.html

• United States Death Records. (n.d.). Retrieved February 26, 2018, from https://www.familysearch.org/wiki/en/ United_States_Death_Records

• Ventura, H. O., & Mehra, M. R. (2005). Bloodletting as a Cure For Dropsy: Heart Failure Down the Ages. Journal of Cardiac Failure, 11(4), 247-252. doi:10.1016/j.cardfail.2004.10.003

• WHAT IS NURSING RESEARCH? (n.d.). Retrieved February 26, 2018, from https://www.ninr.nih.gov/