Project I: Maria Case Study

Maria Case Study:

This case study is about Maria, a Hispanic patient/client with amyotrophic lateral sclerosis (ALS). You will apply the nursing process, wholistic caring using the mind, body and spirit framework, and other nursing frameworks and theories to a case study with consideration given to a client of diversity and to reflect, through discussion, how current trends and research environments have affected the health care delivery to this patient and family. You are a home care nurse.

CASE STUDY OF “MARIA”

Maria is a 51- year old, divorced Hispanic woman. She has two sons, ages 16 and 21 years. Maria has been diagnosed with amyotrophic lateral sclerosis (ALS [commonly known as Lou Gehrig’s disease]) since 2020 and has had to quit her job. The older son had left home to study business in college, but due to his mom’s declining health, he has returned to help care for Maria and their home. Maria has had to cope with the changing lifestyle of an independent woman to one who is rapidly becoming more dependent. Maria visits an ALS clinic at least once a month at the Veteran’s Hospital Medical Complex in Milwaukee, Wisconsin, since her diagnosis, and gains support from the interdisciplinary team from her visits. Maria and her two sons live in Jackson, Wisconsin in Washington County. Maria served in the army reserves for over 20 years and was called to active service several times.

Maria can communicate through speaking, writing and reading at this time. Her voice is becoming weaker due to the disease process. At times, she conveys words that are difficult to understand by her sons and caregivers. She is bilingual speaking Spanish fluently and in English very well. Her sons only speak English, her siblings are bilingual along with her divorced husband, and her mother speaks some English, and usually speaks Spanish with Maria and her siblings.

Maria weighs 120 pounds. She has lost 20 pounds since the diagnosis of ALS. She takes supplemental nourishment by drinking Ensure. Upon history taking, you have found that Maria is in the late early to middle stages of Maria’s ALS but worsening at a rapid pace. She has had difficulty tying shoes and opening jars. She was in a woman’s bowling league and she would drop the bowling ball. She waited 9 months prior to seeing a physician and after many tests, and one year of referrals, and more tests, she was diagnosed with ALS. She now has more muscle fatigue, cramping, fasciculations, and stiffness and has an old wheelchair, cane and walker to assist her mobility. She has neck and joint pain and at times, she uses a neck brace. She has fallen and she has been unable to get up by herself. She occasionally trips when she walks in the apartment. She no longer drives. Although very infrequent, Maria exhibits some excessive laughing and crying spells. At times, she has headaches probably due to respiratory insufficiency.

Maria had been married for over 20 years, but has been divorced from her husband, Hugo, 5 years ago. Her spouse does see Alberto and Juan and has a good relationship with Maria. She maintains joint custody with Hugo of her two sons, aged 16 and 22 years. The 16-year-old son, Juan, lives with Maria. The 22-year-old son, Alberto, moved to a college campus where he pursued his business degree, but now has returned home to help Maria and Juan.

Maria’s mother lives with relatives in Texas. Maria states that she has a very good and loving relationship with her mother who is in her late 70s. Her father died from Parkinson’s disease 4 years ago. Maria continues with her grief as her father and Maria had an excellent relationship as they worked side by side as seasonal workers within the fields for many years. Her mother suffers from heart disease and diabetes which also limits her ability to assist Maria. She is retired and tries to visit Maria one to two weeks over the fall when seasonal work is accomplished. She travels to Wisconsin with other relatives. Maria vacations in Texas to visit relatives, but is no longer able to travel.

Maria’s 4 siblings are seasonal workers in Wisconsin and return to Texas during winter. Maria is very close to her sister, Juanita, who is 11 months older than her. Like Maria, Juanita burns candles and prays to St. Christopher and Virgin of Guadalupe and God for Maria. Along with Juanita, she also prays to St. Christopher and God. A rosary and cross are seen on her dresser in her bedroom along with a picture of the Virgin of Guadalupe hanging above her dresser. Maria is very concerned about death and dying and has shared that she has read about physician assisted suicide. She feels strongly that God is in control, and could not take this route due to her strong religious beliefs. She is asking you if the Catholic perspective on PAS has changed. When assessing Maria’s spirituality, she shared that she was baptized as an infant in the Catholic faith, took Holy Communion in second grade, and was confirmed as a teenager. Maria follows Canon Law and attends mass on Sundays. She uses Holy Water to bless herself regularly, takes Communion every Sunday, and sings in the church choir. She wears a necklace with a crucifix. At meals, Maria says prayers and crosses herself. Her priest has also given her communion. She confesses sins to him regularly. And her priest has given her Anointing of oils for healing. A parish nurse visits at least twice a week. In the past, Maria also sponsored several youth for confirmation and taught Sunday School.

Juanita visits weekly while she is in Wisconsin working in the fields and at least every Christmas after she returns to Texas. Maria is a first-born generation of Mexican immigrants. Maria and her parents are U.S. citizens. In the past, Maria has used herb and other folk remedies including teas for illnesses. She also believes it is God’s will to whatever happens.

She is also asking questions about a “breathing machine” and feeding tube. She has read about both and wonders if her quality of life will improve. She also needs to complete advanced directives and is thinking that she should have Hugo or Juanita be the power for health. At present, she has no will or advanced directors.

Prior to becoming ill, Maria was an apartment manager and able to support herself, her youngest son, Juan, and contributed financially to Alberto’s education. Her housing and utilities are covered as a manager, along with an additional $3500 each month as an employee. Maria has met with a social worker to apply for SSI and Badger Care, along with disability benefits and she receives both. She has met the criteria for disability benefits under the Disability Act. Maria states she is concerned about her finances. Alberto has helped Maria with the management of the 75-unit apartment complex and Maria has asked the apartment owner to have Alberto take the management role and has agreed to this. Maria and her sons can stay in a two-bedroom apartment with a large living room, kitchen, two bathrooms, and dinette area. All areas are on one level on the ground level of the building. Alberto plans to take one class every semester to continue his studies. Both boys are supportive of Maria and exhibit anxiety and fear about their mom and their futures.

Maria is aware of the outcome of her diagnosis and has arranged for her 16-year-old son to live with Alberto or his father, Hugo, when she becomes gravely ill and dies. Maria has two close female friends, Hannah and Rosa, who are trying to help Maria remain at home. They assist with obtaining groceries for her and providing emotional support. Maria moved to Wisconsin when she married as her husband’s family lived in Wisconsin. Maria has no desire to move to Texas. In the past, both her husband and Maria were seasonal workers for area farmers. They also worked in canning factories. She served in the army reserves for 20 years. Maria did return to school and completed a Bachelor’s degree in Business, and has been an apartment manager for over 10 years. Hugo now works for a landscape company and is beginning to understand that Maria is very sick. In fact, Hugo and his co-workers took the ALS ice bucket challenge in 2015 as a co-worker was suffering from ALS. He visits weekly and supports Maria and his 2 sons.

Maria’s past health history includes the following:  Perforated uterus during a D & C procedure in 2015,  Ruptured ovarian cyst and hysterectomy in 2016  Two episodes of pneumonia within the past year which included one hospitalization. As a result of her illness, she is no longer able to drive a car or climb stairs. Two days ago, Maria fell on her face injuring a front tooth and lacerating her lip, which required sutures. She has admitted that several falls have occurred, but this is the first time that she needed medical attention. A referral to home health was made. Upon assessment, she has muscle atrophy, muscle weakness, hyperreflexia in both legs, and an absent Babinski sign on the left. She complains about neck pain, leg spasms and loss of appetite. Maria wants to try dry needle therapy to her legs for cramping. She has not tried a pain clinic yet. Her discomfort is almost “unbearable” at times and is interested in trying medical marijuana. She has read about Wisconsin’s Lydia law and is asking you about what you thought of medical marijuana as a professional. Maria also has an exaggerated gag reflex. She is asking for more help in assistive devices to help her remain mobile.

Maria admits that she is fatiguing more easily, has an unsteady gait and experiences dyspnea with minimal activity. She requires two pillows to sleep on at night. Maria eats two meals each day and expresses some concern about coughing after drinking fluids. Swallowing solids is not a problem. Although bowel movements have always been regular, some constipation have been experienced. She is more homebound. Washington County has limited transportation services. She has relied on Hannah, Rosa, and her sons to drive her to church, and the ALS clinic.

Maria’s major support system is Hannah and Rosa, along with her sister, Juanita, and her two sons, to whom she talks when she feels worried or afraid about her condition. Maria also finds support through her local church, including visits from a parish nurse, but she is unable to attend now. She has received comfort from her priest, but he hasn’t contacted her for several weeks. In lieu of going to church, Maria has been listening to the Christian Radio Network for Catholic services and hymns. She continues to remain hopeful about her illness. Several times, Maria has mentioned that she relies on faith and that her spirituality is very important. She identified several faith traditions previously. She feels she is being punished and conveys that she feels that her divorce may have something to do with this as marriage is a sacrament in the Catholic faith and her sin against God.

She is also asking about how transitional care will help her deal with death and dying. Maria wants to continue to live in her apartment until she dies. No funeral plans have been initiated.

Maria had her son use the internet to search about ALS. She is reading lots of research about ALS. She has read about the SODI gene and ALS. She has also read about military service and environmental risk factors like pesticides and the link to ALS. As a nurse, you will be sharing some research on family genetics, as Maria is worried about her sons getting ALS. She has no knowledge about the ALS registry. Maria has also used a traditional healer called a curandero, and a sobador, who gives her a massage due to neck and shoulder pain. Maria also is using lavender, an essential oil, for anxiety which she also reports that her sleep has improved. She uses aromatherapy for the lavender. She is asking you if there is research on lavender and what side effects it may produce.

Physical examination of Maria reveals the following data:
Temp 99 orally, pulse 86-regular, B/P 138/78 (R) 140/80 (L). Respirations are 22 and slightly labored. Skin is cool, pale and dry. Capillary refill is less than 3 seconds. Slight edema is noted bilaterally in pedal and ankle areas. Oxygen saturation is 92%. Maria’s current weight is 120 lb. and height 5’4″. Upon auscultation, heart tones are clear and regular. Breath sounds are diminished bilaterally in the bases. Productive cough with white clear sputum. Abdomen is slightly firm with hypoactive bowel tones in bilateral lower quadrants. Maria complains of hard bowel movements and mild constipation. Bruises are noted on Maria’s left arm, hip and knee. Seven sutures on Maria’s left lower lip are intact as a result of her fall. Overall skin is intact. She also complains of leg weakness and is beginning to use a walker. You have used health care informatics and all labs are within normal ranges, except for K+ which is low normal at 3.3.
An environmental assessment will be completed, along with risks for falls.
Medications include Rilutek, multivitamin, Scopolamine patches for drooling, an anti-depressant, an anti-anxiety, Baclofen for stiffness, and leg spasms, Nuedexta for outbursts of laughing and crying, and Ensure twice daily. Maria has read about Radicava, an IV medication but has decided against it for now due to the cost. Maria is also very interested in communication devices.

You are a home care registered nurse assigned to Maria; this is one of your first visits to Maria. You will continue to visit Maria at least 3 times weekly.
______________________________________________________________________
MUST USE THESE RESOURCES:
For more information about ALS, contact the Wisconsin Chapter of the ALS Association, 3333 North Mayfair Rd Suite 104, Wauwatosa, WI 53222, 414.771.9400; OR the National office of The Amyotrophic Lateral Sclerosis Assoc., 27001 Agoura Rd, Suite 250, Calabasas Hills, CA 91301-5104, 818.340.7500, 800.782.4747; http://www.also.org
Also google the ALS magazine called Hopeline. Hopeline is published quarterly by the ALS Association INC., WISCONSIN Chapter., WI chapter: www.alsawi.org phone number (262)784-5257. Visit other neurological sites including muscular dystrophy.

The Maria Case Study will be completed by each student. The student will review and study the case and complete each section. You will submit a paper in APA format. This is a comprehensive project that may be a minimum of 30 pages in length. There is no page limit to your paper. This project will reflect previous course material. Use tables to help you organize your material in any way you can. Remember to name and label each table that you created. Use level one headings to help you present each section.

1. SECTION 1: This section will be presented in short answers, 2 to 3 sentences or in one to two paragraphs. Read the sections carefully. This is only a guideline and the rubrics that follows is for grading purposes. This guideline gives you tips to find more information.

Begin Maria’s Case Study with a literature review of ALS. Cite background literature and research in your presentation of ALS. This section, you will present as a question and answer section with short answers to each question. Do not write more than a few sentences.

QUESTIONS TO INCLUDE:
1. what is ALS: pathophysiology including at the cellular level
2. history of ALS: when was it identified and by whom, and how did we become better aware of ALS
3. presentation of symptoms and disease progression including early, middle and late stages of symptoms (use a table for presentation of signs and symptoms, including causes of death)
4. ethnicity and diagnosis of ALS (use a table for presentation of ethnic groups and ALS)
5. gender differences and similarities in males and females
6. incidence and prevalence of ALS (incidence is the rate of new or newly diagnosed cases of the disease. It is usually reported as the number of new cases occurring within a period of time (month, year) or by a fraction of the population like per 100,000 people). (Prevalence is the actual number of cases alive with the disease in a period of time).
7. age of usual onset of the diagnosis of ALS,
8. etiologies including genetic, and specific genes (list 4 which may include C90RF72 found in 2011, and SOD1 found in 1993)
9. discuss genetic counseling, and the legal, ethical and Catholic perspectives of genetic counseling.
10. what is the Genetic Information Nondiscrimination Act of 2008?
11. environmental etiological factors (list at least 4) that are associated with ALS
12. occupational risks and ALS (identify 2 occupations that may be linked to ALS
13. longevity of disease (life span after diagnosis of ALS)
14. ALS registry: what is it, and how it will help ALS patients and families, when was it implemented? How does it help research efforts? What is the biorepository for ALS? Funding for ALS Association
15. ALS Bill of rights: what is it and what are professional registered nurse’s responsibilities??

2. SECTION 2: This section is written in paragraph format.
This section will take time and research. Again, this is only a guideline to help you research the material and to explore the topics more in depth. Use the rubric to what I am asking for in grading.

1. Investigate political factors and their impact on health policies, ethical, legal, professional and Christian (primarily Catholic) factors that may affect care provided to Maria and others with ALS.
Use the following resources as a guide to to help you with each issue. What does the Catholic perspective have to say about health and social issues? Use the Nurses’ Code of Ethics and Nursing Social Policy Statement to help you guide you to what professional nurses should do and support decisions. Use Wisconsin State Board of Nursing Act for legal ramifications. Explore what a professional registered nurse must do including that of referral, knowledge, coordination, and research. Also reflect on your own perspective of each issue.
Investigate stem cell research, medical marijuana, Disability Act of 1990 and the 5-month waiting period to approve benefits, physician assisted suicide, stem cell research and medical marijuana You will explore ethical, legal, professional and Christian (Catholic) implications of political discussions and decisions made by governing bodies of each item that has been identified. Cite references.
a. You should have at least 5 to 6 paragraphs on each issue. Make sure that you focus on all aspects of the topic that is addressed in the rubric.
b. Make sure that you address each item that has been asked for in all areas of political (governing bodies), legal (what is the law?), ethical, professional and Catholic (Christian) perspectives.
c. Identify different types of stem cells in your discussion of stem cell research: endogenous, induced pluripotent, fetal and embryonic. How does the Catholic church respond to each type of stem cells and how they are used?
d. Explore the Nurse’s Code of Ethics from the American Nurses Association for each issue. Use such terms as autonomy, beneficence, justice and respect and the sanctity of life. Refer to State Nurse Practice Act in your state.
e. Make sure that you present the differences of euthanasia, and physician assisted suicide (PAS). What are the general legal criteria that doctors must use to prescribe a lethal dose of a drug to terminally ill patients?
Make sure that you present the Catholic perspective of physician assisted suicide and the foundation of the sanctity of life for decisions in the Catholic and Christian faiths. What is the reference to God the author of human life? How does it preserve the sanctity of human life? What does it say about protecting the poor, terminally ill and people with disabilities?
Make sure that you reflect and present on the American Nurses’ Association (ANA) position of physician assisted suicide. In June, 2019, the American Medical Association (AMA) has continued to oppose physician assisted suicide. The AMA has the largest association of physicians in the United States. At its annual meeting in Chicago, delegates affirmed its opposition to PAS on a 360 to 190 vote. The AMA position underscored its ethics of “PAS is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.” What is the position of the ANA? What are the responsibilities of the professional registered nurse?
At present, the following states have legalized physician assisted suicide: Washington (2008), Oregon (1997), Maine (2019), California (2015), Colorado (2016), Hawaii (2019) New Jersey (2019), Vermont (2013), New Mexico (2021), and Washington D.C (2017). One state of Montana has legal PAS via court ruling. The federal government and all 50 states prohibit euthanasia under general homicide laws. Where does the state of WI stand on PAS?

f. Make sure you present what states have legalized medical marijuana? And for Wisconsin, explore the Lydia Law. What is the perspective of the Catholic church about medical marijuana? What are the professional registered nurses’ responsibilities with medical marijuana? Why are state and federal laws different with medical marijuana causing conflict?
g. Refer to the ALS Association, American Nurses Association and their position statements on stem cell research, therapeutic use of marijuana, physician assisted suicide, the American Cannabis Nurses Association, the Association of the American Medical Colleges, Death with Dignity, Muscular Dystrophy Association, National Institute of Neurological Disorders and Stroke and other professional websites that will give you information for this section
h. Finally, some issues you will reflect on from your own individual perspective.

i. SECTION 3: This section is presented in a paragraph format. Conduct a literature review and discuss the Hispanic/Mexican culture and how it affects Maria’s health and illness beliefs and treatments regarding nursing and cultural competence. Include the following:

-family (familism), and the role of family in decision making and women’s (marianismo) and men’s (machismo) influence in the Hispanic culture, and family
-religious influences
-language barriers and communication patterns, linguistic patterns, nonverbal communication, use of silence, teaching strategies that are evidence based to help with cultural sensitivity, and health literacy, self-care management with culture, pain and comfort
– folk remedies (herbs like lavender) and nontraditional healers (like a sobador, curandero and others)
– etiologies of health, illness, and disease including humoral causation, hot and cold illnesses, evil eye, God’s will;
-what is empacho, envidia, susto,

Also finish references using APA, remember to review spelling, grammar, verb-tense, references, pagination, headings, cover page, abstract.

Also focus on the worthiness of this project.

MARIA CASE STUDY: Student’s Name _________________ Date_______________
Possible
Points Actual Points
1. This section is to be answered in short answers in a few words or in 2 to 3 sentences or by paragraphs. Also develop tables when asked. Write the question and answer it in your presentation. No explanations please unless asked for.

Part I: ALS

-Introduction and overview of amyotrophic lateral sclerosis (ALS) (2-3 sentences) (1 point)

-When was ALS discovered and by who? (1 point) Short answer

-Name two famous people who have been diagnosed with ALS (1 point) (short answer)

-List and define the two common types of ALS? (2) (short answer: identify each type with one sentence of explanation of each type)

Pathophysiology of ALS at the cellular level (5 points) (In one to two paragraphs, explain what is happening at the cell level; remember this is at the cellular level)

Develop a table of symptoms in early, middle, late, and end stage symptoms including 2 causes of death (8 points)

Develop table with ethnicities (White, African-American, Hispanic and Asian and incidence of ALS in each population (3)

Gender differences and similarities in incidence between males and females (2) short answer

Incidence and prevalence of ALS (2) short answer (use per 100,000 people in presentation)

Age of usual onset of the diagnosis of ALS (1) give range and mean age, life span/longevity and mean survival post diagnosis (1 point) (short answer)

Etiologies:
-Identify and list 4 possible genes (2)
-in two paragraphs, explain why genetic counseling is necessary and what are the legal and ethical aspects of genetic testing; (4)
– explain in one paragraph Genetic Information Nondiscrimination Act (GINA) (2 points)
– explain in one paragraph, what is the Catholic perspective of genetic testing and counseling (3 points)

– Environmental: Identify and list 4 environmental risks that may correlate with diagnosis of ALS (2 points)

-identify and list 2 occupations that may be at risk for developing ALS (2 points)

-ALS Registry: (8)
-what is it (1)
-when implemented (1)
-types of questions asked (1)
– biorepository: what is it and what samples are taken (1)
-research using data, and other clinical trials (1)
-how many people have participated in the ALS registry this year or since its creation, thus number of participants in the ALS registry (1)
-who funds the ALS registry and how much is it funded (2)

ALS Association
-what is the association and what do they do, along with nurses’ responsibilities (2 points)

-ALS Bill of Rights (5 points):
-what is ALS bill of right (1)
– list the 11 ALS Bill of Rights (3)
– what are responsibilities of registered nurses in service to patient and family about the ALS Bill of Rights (1) 57

2. Part II: Discussion of political, Christian (Catholic), legal, professional and ethical factors that may affect Maria. Cite references.

• -Disability Act of 1990 and waiver of waiting period to obtain benefits and payment of disability benefits for
• ALS patients. Explain (2points)
•
• -Physician Assisted Suicide (PAS): (14)
• -definitions of PAS and euthanasia, (2 points)
• -Four legal criteria to be used in states prior to PAS (2 points)
• -ANA position statement, (2 points)
-Wisconsin’s response to PAS (2 points)
• -nurses’ responsibility with PAS (2 points)
• -Christian/Catholic response; (2 points)
•
• -what is your individual perspective of PAS? (2 points)
•
• -Stem cell: (12 points)
• explain types of stem cells: fetal, embryonic, endogenous, pluripotent, (2)
• ethical, legal aspects (2)
• nurses’ responsibilities, (1)
• ANA position, (2 points)
• Wisconsin’s response to stem cell research including private research (1)
• Federal funding (1)
• Christian/Catholic response to types of stem cell research used (1 point)
• what is your individual perspective of stem cell research and therapy; explain perspectives with all types of stem cell therapies (2 points)
•
• -Medical marijuana: 17 points
• what is marijuana, CBD and TCH, and other compounds in marijuana (3 points)
• identify one oral form of medical marijuana and how is it used (1 point)
• what are the legal laws of federal government (1)
• -what are the laws of states (1)
• -what is recreational form of marijuana (1)
• -what is medical form of marijuana (1)
• -ethical implications (1)
• Christian/Catholic response to both medical and recreational marijuana (2)
• ANA position statement, and nurses’ responsibilities (2 points)
• Wisconsin’s response: legally and WI Lydia’s Law (2 points)
• what is your individual perspective of medical marijuana (2 points)
• • 45

3 Part III: Hispanic culture and Maria:
-family (familism) and role of family in decision making, and role in patient care and treatment plan (2) and
-traditionally who would makes the decisions for health care and illness (3 points)
-women’s (marianismo) and men’s ((machismo) perspectives (5)
-language barriers and communication, linguistic patterns including nonverbal communication and strategies that nurses can use, especially evidence-based teaching strategies would you use with Maria and Her Hispanic family considering health literacy, cultural sensitivity, and linguistic interventions (5)
– how is pain and comfort managed in this culture; how would you assist Maria to engage in self-care management based on her culture (5 points)
-folk remedies (herbs including lavender) 5
– nontraditional healers (like a Sobador, Yerbero, and Curandero,) 5
– Etiologies of disease, health and illness (5)
– hot and cold illnesses,
-humoral imbalances,
-evil eye,
-God’s will,
-what is empacho, envidia, and susto?

35
3. Part IV. Conforms to APA style of writing and presentation:
Title page
Running head
Pagination
margins
Abstract: summary of project; includes keywords
On first content page on page 3, title repeated from cover page
Spelling,
use of headings and transitional sentences/paragraphs
tables are numbered and titled
organization of paper
grammar,
verb-tense,
paragraph formation,
singular versus plural,
use of possessive (‘s)
correct punctuation
line spacing (double spacing only)
use of lower and upper case letters
who versus that (example: patient who and not patient that)
numbers (one to nine spelled out; 10 and above written as numeral, unless first words of a sentence)
citations
references (within last 5 years)
use of formal writing; avoid us, you, we, your 10
Part IV: Is this project worthwhile?
Does it capture program outcomes and Concordia’s mission statement in serving students to develop in mind, body and spirit?
Does it capture previous course work?
What would you modify, or change in this project?
On a one to ten basis how much did you learn? What section was the most beneficial for learning?

3

Total Points 150