Applying Holism in the Home Care Environment for Clients With Advanced ALS: A Toolkit for Practice

Victoria Hall, RN, MSN, CCRN

Topics in Advanced Practice Nursing eJournal. 2003;3(2)

Abstract

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive, debilitating disease that targets motor neurons. As motor neurons die, voluntary skeletal muscle becomes weak, atrophied, and eventually paralyzed, to the point of supraquadriplegia with the need of ventilatory support for those who choose it. The purpose of this article is to demonstrate application of the nursing process as a guide to the detailed care of patients with advanced ALS. Applying a model of holism allows the advanced practice nurse (APN) to explore beyond the complex physical needs and technical management by facilitating psychosocial-spiritual growth and the best possible quality of life.

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Cite this: Applying Holism in the Home Care Environment for Clients With Advanced ALS: A Toolkit for Practice - Medscape - May 08, 2003.

Table 1. Possible Etiologic Factors in ALS ^[1]
Altered Immunity
Antibodies to calcium channels Antineuronal antibodies Antisprouting antibodies
Disordered Neuronal Metabolism or Function
Abnormal neurotransmitter function Abnormal thyrotropin releasing hormone Altered axonal transport Defects in neuronal membrane structure or function: heat shock proteins/stress proteins Defects in the urea cycle Disordered calcium, phosphate, and bone metabolism Hyperparathyroidism Loss of cholinergic receptors Loss/dysfunction of androgen receptors
Excitotoxicity
Alterations in serum and spinal fluid glutamate EAAT2 (glutamate transporter) protein deficiency Zinc-induced excitotoxicity Seed of Cycas circinalis (native to Guam)
Genetic Disorders and Abnormalities
ALS1: Defect in superoxide dismutase gene (SOD1) ALS2: Chromosome 2q33 DNA and RNA abnormalities Genetic markers/HLA antigen Hexosaminidase deficiency
Infectious or Inflammatory Disorders
Severe upper respiratory infection Syphilis Viruses, especially poliovirus, echovirus 7, HIV, and a mutant virus termed stealth virus Prions
Heavy Metals and Trace Minerals
Aluminum Copper Lead Manganese Mercury Selenium
Nutritional Disorders
Dietary deficiencies Gastrointestinal dysfunction Vitamin deficiencies
Physical Injury
Pneumatic tools Prior surgery Electrical injuries Prior trauma Radiation
Toxic Agents or Exposures
Animal carcasses and hides Endogenous "toxins" Gasoline Household pets Spinal anesthesia
Other
Abiotrophy (premature aging) Apoptosis (programmed cell death) Malignancy Neurotrophic factor deficiencies Nitric oxide Paraproteinemia Altered expression of vascular endothelial growth factor (VEGF) Vascular disorders

Table 2. Homecare Supply Set-Up and Maintenance
Item	Comments
Respiratory
Ventilators (2)	1 at the bedside; 1 for wheelchair and backup
Bacterial filters (3 sets)	For ventilators
External 12-volt battery	For portable ventilator
Battery charger	For portable ventilator
Tracheal cuff pressure gauge	Pressures < 25 cm/H₂O decrease risk of complications
Percussor	Use for chest physiotherapy
Pulse oximeter	Continuous bedside monitoring
Suction machines (3)	1 at the bedside; 1 as backup; 1 portable (battery powered)
Low-pressure backup alarm	Backup for ventilator alarm
Compressor for nebulizer (2)	1 at bedside; 1 as backup
O₂ condenser	Continuous at the bedside
O₂ tubing (3)	1 25 ft for travel, the rest 6 ft
E-Tanks (number depends on use)	Backup O₂, travel
Heat and humidity source	Example, Hudson Heater, Concha columns, with Concha water; for portable, need heat and moisture exchanger, sometimes call an "artificial nose"
Manual resuscitation bags (2)	1 immediately available at all times; 1 behind ventilator as backup
Ventilator circuits complete (3)	2 rotate for weekly cleaning (return circuit behind ventilator once dry); 1 for wheelchair
5 gallon buckets with lids (2)	1 for ventilator cleaning solution; 1 for rinse
Red Rubber Catheters (RRC) (case)	Use for clean suctioning technique; clean nightly; change weekly
Quart containers with flip-top (2)	1 for RRC/sterile water/vinegar; 1 for sterile water rinse
Suction hoses (4)	2 rotate for weekly cleaning; 1 for portable; 1 for backup
Yankauer suction (3)	2 rotate for weekly cleaning, wash nightly; 1 for portable; 1 for backup
Tracheostomy tube (3)	Backups for monthly changes and emergencies; include a tube 1 size smaller
Trach tube holder (case)	Example: Dale
Nebulizer kits (6)	Rinse after each use; clean 3x per week
Bronco Saline	NS for nebulizer
Normal Saline vials (box)	Best for suctioning when needed for tenacious secretions
General
2x2 IV sponges, sterile (6 boxes)	G-tube stoma care
2x2 sponges, clean (2 packages)	Eye care, stoma care
4x4 sponges sterile (2 boxes)	Wound care and miscellaneous
4x4 drain sponges, sterile (6 boxes)	Trach care
6" Cotton-tipped swabs (2 boxes)	Trach and g-tube care
Alcohol swabs (2 boxes)
Cleaning solution for ventilator circuit	Example: Control III
G-tube (3)	Change monthly and as needed
Gloves (by box or case)	All sizes to fit staff and caregivers; consider powderless, nonlatex
Absorbent pads	Deluxe grade for comfort and absorbency
Nonpetroleum lubricating jelly	Tube changes
Fire extinguishers and smoke detectors	1 near patient, others in rooms such as kitchen

Table 3. Nutrient-Dense Menu Options for Enteral Feedings
Macronutrient	Protein 20% to 25% 4 kcal/g	Carbohydrates 55% to 60% 3.3 kcal/g	Fats 20% to 25% 9 kcal/g
Nutrient dense menu options	Fish Salmon+ Tuna+ Mackerel+ Herring+ Meat Chicken Eggs (not raw) Yogurt Goat milk Tofu Soft or silken Protein powder Whey	Fruits Cantaloupe* Grapefruit* Orange* Strawberries* Tomato* Watermelon* Vegetables Acorn squash* Asparagus* Cauliflower* Broccoli* Potato* Grains Quinoa Brown rice Millet Barley	Avocado* Coconut Tofu Nuts Olive oil Flax seed oil Fish oil products

Table 4. Determining Energy Needs
Step 1. Determine the basal metabolic rate (BMR). Also called resting energy expenditure (REE) and basal energy expenditure (BEE). Energy expenditure = BMR x stress factor x activity factor.
Harris-Benedict formula
Men	66 + (13.7 x wt in kg) + (5 x ht in cm) - (6.8 x age in years)
Women	655 + (9.6 x wt in kg.) + (1.8 x ht in cm) - (4.7 x age in years)
Step 2. Adjust the BMR for added stress (very general)	Surgery: 1.1-1.2 x Trauma: 1.1-1.4 x Infection: 1.1-1.5 x
Step 3. Determine level of physical activity	Ambulatory 1.3 x Confined to bed 1.2 x
Protein Requirements
Healthy adult	0.8 g/kg per day
Stressed adult	1.5-2 g/kg per day

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