Hospice for ALS - Comfort Care for Lou Gehrig's Disease

Article reviewed by Dr. Thomas Richardson, MD, Board-Certified Neurologist specializing in ALS and neuromuscular diseases with 17+ years experience in ALS care and hospice coordination.

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is one of the most devastating neurological conditions. Unlike many diseases where the timeline is uncertain, ALS follows a predictable, progressive course. Motor neurons that control voluntary muscles gradually die, leading to increasing paralysis while cognition typically remains intact. Most people with ALS live 2-5 years after diagnosis, though some live longer.

The cruelty of ALS is that patients remain mentally sharp, fully aware as their bodies stop responding. They lose the ability to walk, use their hands, speak, swallow, and eventually breathe, all while their minds remain clear. This awareness makes quality of life and maintaining dignity especially important.

Hospice care for ALS provides specialized support focused on comfort, respiratory symptom management, communication assistance, and honoring patient choices about treatment decisions. This article explains when hospice becomes appropriate for ALS patients, what hospice offers that’s unique to ALS care, and how to access compassionate support in Oklahoma.

Quick Answer: When Is Hospice Appropriate for ALS?

Hospice becomes appropriate for ALS patients when the disease has progressed to cause significant respiratory impairment, severe nutritional decline from swallowing difficulty, rapid functional deterioration, or when patients choose to forego mechanical ventilation. Medicare criteria include forced vital capacity (FVC) less than 30% of predicted, critical nutritional impairment with albumin under 2.5 g/dL, or life-threatening complications like aspiration pneumonia or respiratory failure. Oklahoma Home Hospice and other providers in Tulsa and Muskogee coordinate with ALS clinics at University of Oklahoma Physicians and regional neurology practices to provide BiPAP management, communication device support, specialized equipment, and family education throughout the disease progression, respecting patient decisions about advance directives and end-of-life choices.

Understanding ALS and Disease Progression

ALS is a motor neuron disease that specifically attacks nerve cells responsible for controlling voluntary muscle movement. Understanding how the disease progresses helps families recognize when hospice care becomes appropriate.

What ALS Is and How It Progresses

Motor Neuron Degeneration: In ALS, both upper motor neurons (in the brain) and lower motor neurons (in the spinal cord) progressively die. Without these neurons sending signals, muscles don’t receive commands to move. Muscles weaken, atrophy (shrink), and eventually become paralyzed.

What ALS Affects:

Limb muscles (arms and legs) - causing difficulty walking, using hands, lifting objects
Bulbar muscles (speech, swallowing, facial expression) - causing slurred speech, difficulty eating, drooling
Respiratory muscles (diaphragm, intercostal muscles) - causing breathing difficulty and eventual respiratory failure

What ALS Typically Doesn’t Affect:

Cognitive function (though some develop frontotemporal dementia)
Sensory nerves (touch, pain, temperature sensation remain intact)
Eye movement (usually preserved until very late)
Bladder and bowel control (usually maintained)
Sexual function

This selective nature means ALS patients remain mentally aware, able to see and hear, and capable of experiencing sensation even as paralysis progresses.

Timeline from Diagnosis to End-Stage

Typical ALS Timeline:

Months 0-12 (Early Stage):

Initial symptoms appear (weakness in hand, foot, or speech)
Diagnosis confirmed through neurological examination, EMG studies, and ruling out other conditions
Patients remain relatively independent, able to work and perform most activities
Treatment with riluzole and edaravone may modestly slow progression

Months 12-24 (Middle Stage):

Weakness spreads to other body regions
Walking becomes difficult, may need assistive devices (cane, walker, wheelchair)
Hand function declines, difficulty with buttons, writing, eating utensils
Speech may become slurred (dysarthria)
Swallowing difficulties begin (dysphagia)
Breathing capacity starts declining

Months 24-36 (Advanced Stage):

Significant paralysis in multiple limbs
Wheelchair-dependent
Severe speech impairment, may use communication devices
Significant swallowing difficulty, may need feeding tube
Breathing difficulty becomes pronounced, may use BiPAP
Complete dependence for activities of daily living

Months 36+ (End-Stage):

Near-total paralysis
Cannot speak (anarthria)
Cannot swallow safely
Respiratory failure without ventilator support
Death typically from respiratory failure or aspiration pneumonia

Important Note: This timeline is an average. Some patients progress much faster (6-12 months from diagnosis to death), while others live 5-10 years or more, especially those with slower-progressing variants.

Physical vs. Cognitive Function in ALS

One of ALS’s most challenging aspects is the disconnect between body and mind:

Physical Decline: Progressively worsening paralysis leaves patients unable to move, speak, or care for themselves. They require total assistance for all needs.

Cognitive Preservation: Most ALS patients (about 90-95%) maintain normal cognitive function throughout their illness. They:

Understand everything happening around them
Remember their lives before ALS
Experience full range of emotions
Make their own decisions about care
Feel frustration, fear, sadness, and hope

Frontotemporal Dementia (FTD) in Some Patients: About 5-10% of ALS patients develop frontotemporal dementia, affecting:

Executive function (planning, decision-making)
Personality and behavior
Language processing

When FTD coexists with ALS, it complicates decision-making about treatment, but doesn’t change the terminal nature of the disease.

Why Cognitive Awareness Matters: Because ALS patients typically remain mentally sharp, hospice care emphasizes:

Maintaining dignity and autonomy
Supporting communication as speech fails
Honoring patient preferences and decisions
Treating the patient as the decision-maker, not an object of care
Quality of life from the patient’s perspective

Why Respiratory Function Is Critical

While ALS affects all voluntary muscles, respiratory muscle failure is what ultimately causes death in most ALS patients.

Respiratory Muscles Affected by ALS:

Diaphragm: Primary breathing muscle that contracts to pull air into lungs
Intercostal muscles: Between ribs, assist with breathing
Abdominal muscles: Help with coughing and clearing secretions

Progressive Respiratory Decline: As these muscles weaken:

Lung capacity decreases (measured by forced vital capacity - FVC)
Breathing becomes shallow and inefficient
Carbon dioxide builds up in blood (hypercapnia)
Oxygen levels drop (hypoxemia)
Clearing secretions becomes difficult, increasing pneumonia risk
Sleep-disordered breathing develops (sleep apnea, nocturnal hypoventilation)

Respiratory Failure as Cause of Death: Without mechanical ventilation, ALS patients eventually cannot breathe adequately. Death occurs from:

Respiratory failure (inability to maintain oxygen and CO2 levels)
Aspiration pneumonia (food, liquid, or saliva entering lungs)
Acute respiratory crisis during sleep

This Makes Respiratory Management Central to ALS Hospice Care: Hospice focuses on keeping patients comfortable as respiratory function declines, managing air hunger, reducing anxiety about breathing, and supporting patients through the natural dying process without mechanical ventilation.

Hospice Eligibility Criteria for ALS Patients

Medicare, Oklahoma’s SoonerCare program, and private insurance cover hospice for ALS patients who meet specific criteria indicating disease severity and limited life expectancy.

Rapid Disease Progression Indicators

What Constitutes “Rapid Progression”:

Functional Decline:

Loss of ability to walk within 12 months of diagnosis
Loss of ability to use both arms within 12 months
Rapid progression from initial symptoms to severe disability

Multiple Body Regions Affected:

Bulbar plus limb involvement
All four limbs affected
Respiratory involvement in addition to limb weakness

Short Time from Diagnosis: Patients who progress from diagnosis to severe disability within 6-12 months have particularly aggressive disease and clearly meet hospice criteria.

ALS Functional Rating Scale - Revised (ALSFRS-R) Decline: This 48-point scale assesses function across 12 domains. Rapid decline (losing 6+ points over 3-6 months) indicates aggressive progression.

Respiratory Impairment Criteria

Respiratory function is the most critical hospice eligibility criterion for ALS:

Forced Vital Capacity (FVC) Less Than 30% of Predicted: FVC measures lung capacity. When it drops below 30%, patients have severe respiratory impairment and life expectancy typically measured in months.

FVC Testing: Performed at neurology appointments using a spirometer. Patients breathe in fully and exhale as hard and fast as possible. The volume exhaled is compared to expected values based on age, gender, and height.

Decline Pattern:

FVC 70-80%: Mild impairment, no immediate concerns
FVC 50-70%: Moderate impairment, begin discussing BiPAP
FVC 30-50%: Significant impairment, BiPAP often needed
FVC below 30%: Severe impairment, hospice appropriate

Additional Respiratory Indicators:

Dyspnea (shortness of breath) at rest
Use of accessory muscles to breathe
Orthopnea (difficulty breathing while lying flat)
Tachypnea (rapid breathing)
Oxygen saturation dropping below 90%
Elevated CO2 levels on blood gas testing

Nutritional Decline and Swallowing Difficulty

Swallowing problems (dysphagia) in ALS lead to malnutrition and aspiration risk:

Critical Nutritional Impairment:

Weight loss of 10% or more from baseline
Serum albumin less than 2.5 g/dL (indicating protein malnutrition)
BMI below 18.5
Dehydration despite efforts to maintain intake

Swallowing Difficulty Progression:

Early: Difficulty with certain textures (pills, dry foods, thin liquids)
Moderate: Prolonged mealtimes, frequent coughing or choking
Severe: Unable to safely eat or drink by mouth, aspiration pneumonia risk
End-stage: Complete inability to swallow (NPO - nothing by mouth)

Feeding Tube Considerations: Some ALS patients choose percutaneous endoscopic gastrostomy (PEG) tube placement to maintain nutrition. This doesn’t disqualify them from hospice—patients can be on hospice with feeding tubes if respiratory decline and overall prognosis indicate limited life expectancy.

However, if patients decline feeding tube placement and cannot safely eat by mouth, severe malnutrition develops rapidly, and hospice becomes very appropriate.

Functional Decline in Daily Activities

Severe functional impairment across all activities of daily living (ADLs) supports hospice eligibility:

ADL Assessment:

Bathing: Requires total assistance
Dressing: Cannot dress self
Toileting: Complete dependence
Transferring: Cannot move from bed to chair without mechanical lift
Feeding: Cannot feed self, may require tube feeding
Mobility: Wheelchair-bound or bed-bound

ALS Patients Meeting Hospice Criteria Typically:

Score 50% or less on Karnofsky Performance Scale (indicating significant functional impairment)
Require 24/7 caregiver assistance
Spend majority of time in bed or chair
Cannot perform any ADLs independently

Life-Threatening Complications

Certain complications indicate end-stage ALS and hospice appropriateness:

Recurrent Aspiration Pneumonia: When patients repeatedly develop pneumonia from aspirating food, liquid, or saliva into lungs despite precautions, prognosis is very poor.

Acute Respiratory Failure: Sudden inability to breathe adequately, requiring emergency intervention. Patients who choose not to go on mechanical ventilator qualify immediately for hospice.

Sepsis: Life-threatening infection spreading through bloodstream, often from aspiration pneumonia or urinary tract infections in immobile patients.

Severe Pressure Ulcers: Stage 3 or 4 bedsores indicating profound immobility and declining overall condition.

Renal Failure: Kidney problems from dehydration, poor nutrition, or multi-organ decline.

When these complications occur in ALS patients, they signal that death is approaching, and hospice focus on comfort rather than aggressive treatment becomes appropriate.

Unique Challenges in ALS Care

ALS presents specific challenges that hospice teams must address with specialized knowledge and equipment.

Maintaining Communication as Speech Fails

Progressive Speech Impairment:

Dysarthria (Slurred Speech): Early in bulbar ALS, speech becomes slurred, nasal, or difficult to understand. Family members can often still understand, but strangers cannot.

Severe Dysarthria: Speech becomes nearly unintelligible. Communication requires extreme effort and causes frustration.

Anarthria (No Speech): Complete inability to speak. Patient cannot produce any vocal sounds. Communication requires alternative methods.

Communication Solutions Hospice Supports:

Low-Tech Options:

Letter boards or alphabet charts (patient indicates letters by eye gaze or pointing)
Yes/no questions (eye blinks, finger movements for answers)
Picture boards for common needs

High-Tech Options:

Speech-generating devices (computers with synthesized speech)
Eye-gaze technology (tracks eye movements to select words on screen)
Brain-computer interfaces (experimental, limited availability)

Hospice Role in Communication:

Coordinating with speech therapists to maintain optimal communication
Training family and hospice staff in patient’s communication methods
Ensuring communication devices are available and functioning
Allowing extra time for patient to communicate, never rushing
Respecting that patient has thoughts, feelings, and preferences even when speech is gone

James, an ALS patient in Tulsa, used eye-gaze technology to communicate until his final days. His hospice team learned the system and always asked his preferences about positioning, music, and care. “They never assumed they knew what I wanted,” he typed. “They always asked and waited for my answer. That dignity meant everything.”

Managing Breathing Difficulties

Respiratory management is the cornerstone of ALS hospice care:

Symptoms of Respiratory Decline:

Shortness of breath with minimal activity
Difficulty breathing while lying flat (requiring elevated head of bed)
Waking at night gasping for air
Morning headaches (from CO2 buildup during sleep)
Fatigue and daytime sleepiness (from poor sleep quality)
Anxiety about breathing

Non-Invasive Respiratory Support (BiPAP): Bilevel Positive Airway Pressure (BiPAP) machines provide breathing support through a mask without requiring intubation or tracheostomy. They:

Push air into lungs during inhalation (relieving work of breathing)
Assist with exhalation
Can be used intermittently (at night) or continuously
Extend life and improve quality of life for months

Hospice and BiPAP: Some hospice programs allow patients to continue BiPAP as a comfort measure even on hospice, particularly if it relieves air hunger without being overly burdensome. This is negotiated based on patient goals and individual circumstances.

Comfort-Focused Respiratory Care:

Positioning to optimize breathing (elevate head, lean forward positions)
Oxygen for comfort (not to prolong life)
Morphine to relieve air hunger and reduce respiratory distress
Anti-anxiety medications to reduce panic about breathing
Fans directed at face (surprisingly effective for breathlessness)
Suctioning to clear secretions if distressing
Scopolamine patches to reduce excessive saliva and secretions

Making Decisions About Ventilation

The most critical decision ALS patients face is whether to accept mechanical ventilation when respiratory failure becomes imminent.

Mechanical Ventilation Options:

Invasive Ventilation:

Tracheostomy (surgical opening in neck)
Ventilator machine breathes for the patient
Can extend life for months or years
Requires 24/7 nursing care or family trained in ventilator management
Speech becomes impossible
Total dependence increases

Non-Invasive Ventilation (BiPAP): As discussed above, provides support without tracheostomy but eventually becomes inadequate as ALS progresses.

No Mechanical Ventilation: Choosing to allow natural death when respiratory muscles fail. This is the choice most ALS patients make.

Why Most ALS Patients Decline Ventilation:

According to the ALS Association, only about 5-10% of ALS patients choose long-term mechanical ventilation. Reasons include:

Quality of life concerns (total paralysis, inability to speak, complete dependence)
Caregiver burden (requires 24/7 care)
Financial costs (ventilator care, nursing, equipment)
Prolonging dying rather than extending meaningful life
Desire to die naturally rather than with machine dependency
Fear of being unable to communicate wishes once on ventilator

Hospice Role in Ventilator Decisions:

Hospice supports patients in making fully informed decisions:

Providing honest information about what ventilation involves
Discussing quality of life implications
Respecting patient autonomy—neither pushing toward nor away from ventilation
Supporting whatever decision patient makes
Helping complete advance directives documenting wishes
Ensuring family understands patient’s choice

Critical Point: Choosing hospice typically means declining mechanical ventilation. Hospice philosophy focuses on natural death with comfort, not prolonging life with aggressive interventions. Patients who want mechanical ventilation wouldn’t choose hospice at that time.

Preventing Aspiration Pneumonia

Aspiration pneumonia—caused by food, liquid, or saliva entering the lungs—is a leading cause of death in ALS.

Why ALS Patients Aspirate:

Weakened swallowing muscles
Inability to protect airway during swallowing
Excessive saliva production
Difficulty coughing to clear aspirated material

Hospice Strategies to Reduce Aspiration:

Dietary Modifications:

Thickened liquids (easier to control than thin liquids)
Soft, moist foods (pureed, ground, or mechanically soft)
Small bites, slow eating pace
Stopping oral intake when swallowing becomes too dangerous

Positioning:

Sitting fully upright for meals
Staying upright 30-60 minutes after eating
Elevating head of bed during sleep

Oral Care:

Frequent mouth care to reduce bacterial load
Suctioning to remove excess saliva
Medications to reduce saliva production (scopolamine, glycopyrrolate)

When Aspiration Pneumonia Occurs: Hospice treats with comfort measures:

Antibiotics if they provide comfort (reduce fever, ease breathing)
Or palliative care only if patient is actively dying
Morphine for respiratory distress
Oxygen for comfort
Suctioning for excessive secretions

The goal isn’t preventing death (which is inevitable), but preventing distressing symptoms and maintaining comfort.

Addressing Mobility and Positioning Needs

As ALS progresses to complete paralysis, positioning becomes critical for comfort:

Challenges:

Cannot reposition self when uncomfortable
Pressure ulcers develop from immobility
Joint contractures (permanent joint stiffness) from lack of movement
Pain from prolonged positioning

Hospice Interventions:

Specialized Equipment:

Hospital bed with adjustable head/foot
Pressure-relieving mattress
Positioning wedges and pillows
Mechanical lift for transfers (preventing injury to patient and caregivers)
Wheelchair with specialized seating and head/neck support

Frequent Repositioning:

Turning every 2-3 hours to prevent pressure sores
Using pillows to support comfortable positions
Range-of-motion exercises to prevent contractures
Gentle stretching to reduce stiffness and pain

Skin Care:

Inspecting pressure points daily
Keeping skin clean and dry
Using barrier creams
Treating any pressure ulcers promptly

Pain Management:

Muscle relaxants for spasticity and cramping
Pain medications for discomfort from positioning
Warm or cool compresses
Gentle massage (if patient desires and can communicate comfort)

What Hospice Provides for ALS Patients in Oklahoma

Hospice care for ALS patients includes specialized services tailored to the unique needs of this disease.

Respiratory Symptom Management (Without Ventilator)

Focus on Comfort Rather Than Prolonging Life:

Hospice respiratory care for ALS aims to relieve air hunger and breathlessness while allowing natural disease progression.

Medications for Breathlessness:

Morphine: The gold standard for relieving dyspnea (air hunger). Low doses relieve the sensation of breathlessness without causing respiratory depression.

Anti-Anxiety Medications: Lorazepam or other benzodiazepines reduce the panic and anxiety that often accompany breathing difficulty.

Oxygen: Used for comfort, not to maintain specific oxygen saturation levels.

Environmental Interventions:

Fans circulating air
Cool, well-ventilated rooms
Calm, quiet environment

Family Education: Teaching families that:

Increased sleepiness as CO2 rises is natural and not distressing for patient
Air hunger can be completely controlled with medications
Patient won’t “suffocate” or struggle to breathe with proper symptom management
The dying process with respiratory failure is typically peaceful when symptoms are managed

BiPAP Management and Support

Some hospice programs allow BiPAP use as a comfort measure for ALS patients:

When BiPAP Continues on Hospice:

If it relieves air hunger and patient wants to continue
When it’s not overly burdensome to patient and family
As long as patient can still communicate wishes about continuing or stopping

Hospice Support for BiPAP:

Equipment maintenance and supplies
Mask fitting to prevent discomfort
Troubleshooting problems
Education about when to use (nighttime vs. continuous)
Permission to discontinue if it becomes burdensome

Transition Away from BiPAP: As ALS progresses, many patients reach a point where BiPAP becomes uncomfortable or ineffective. Hospice supports the decision to stop BiPAP and relies on medications for comfort instead.

Nutritional Support and Swallowing Strategies

Dietary Management:

Hospice dietitians work with families to:

Modify texture and consistency for safe swallowing
Maximize nutrition from foods patient can safely eat
Identify favorite foods and honor preferences
Transition to pleasure feeding (small tastes for enjoyment rather than nutrition)

Feeding Tube Management: For patients with PEG tubes, hospice provides:

Tube feeding supplies
Education about administration
Troubleshooting tube problems
Skin care around tube site

Transitioning to Comfort Feeding Only: When swallowing becomes too dangerous or burdensome, patients may choose:

Small amounts of favorite foods for pleasure, accepting aspiration risk
Ice chips or mouth swabs for moisture
Discontinuing all oral intake and tube feeding
Focus on comfort rather than nutrition

Family Support Around Feeding: Hospice helps families understand:

Decreased intake is natural at end of life
Forcing food causes discomfort
Patient won’t suffer from hunger when appetite is naturally gone
Small amounts for pleasure honor patient’s desires

Communication Device Coordination

Speech Therapy Collaboration: Hospice coordinates with speech-language pathologists to:

Maintain patient’s current communication system
Adapt methods as disease progresses
Ensure all caregivers understand how to communicate with patient

Technology Support:

Ensuring devices are charged and functioning
Having backup low-tech methods available
Training new hospice staff in patient’s communication system

Honoring Patient Voice: Most importantly, hospice ensures the patient’s voice is heard:

Always asking patient’s preferences
Including patient in all care decisions
Treating patient as autonomous decision-maker
Never talking about patient as if they’re not present

Family Education and Anticipatory Guidance

What to Expect as ALS Progresses:

Hospice teams provide detailed education about:

Timeline of disease progression
What changes families will observe
Signs that death is approaching (days to weeks)
How to keep patient comfortable during each stage

Preparing for Respiratory Death: This is especially important for ALS. Hospice teaches families:

What respiratory failure looks like (increasing sleepiness, not gasping for air)
How medications will keep patient comfortable
That patient won’t be aware of breathing difficulty when properly medicated
What to do when breathing changes or stops

Emotional Preparation: Helping families:

Process grief while patient is still living
Have meaningful conversations while patient can still communicate
Say what needs to be said
Find closure and peace

Practical Preparation:

Completing advance directives
Making funeral arrangements in advance if patient wishes
Addressing financial and legal concerns
Planning for after death

Making Difficult Decisions: Ventilator, Feeding Tube, and Advance Directives

ALS patients face profound decisions about life-sustaining treatments. Hospice supports informed decision-making without judgment.

Understanding the Choices

Decisions ALS Patients Must Make:

Mechanical Ventilation:

Accept invasive ventilation via tracheostomy when respiratory failure occurs
Use BiPAP as long as helpful, then transition to comfort care
Decline all mechanical support and allow natural death

Feeding Tube:

PEG tube placement before swallowing becomes too dangerous
Continue eating by mouth despite aspiration risk
Combination approach (tube feeding for nutrition, small amounts by mouth for pleasure)
Decline feeding tube and eventually stop eating when swallowing fails

Advance Directives:

Do Not Resuscitate (DNR) orders
Do Not Intubate (DNI) orders
Healthcare power of attorney
Living will specifying wishes

Quality vs. Quantity of Life Considerations

These decisions involve deeply personal values about what makes life worth living:

Questions to Consider:

What quality of life is acceptable to you?

Is life with complete paralysis but intact mind acceptable?
Is life without ability to communicate meaningful?
What activities or connections make life worth living?
At what point would continued life be burden rather than gift?

What are your fears?

Suffocating or struggling to breathe
Being unable to communicate
Being burden to family
Dying alone or in pain

What are your hopes?

Maximum time with family regardless of condition
Dying naturally without machines
Maintaining dignity and control
Not prolonging dying process

What are your beliefs?

Religious or spiritual views about death
Values about medical technology and natural processes
Views on quality vs. quantity

There are no “right” answers—only what’s right for each individual.

How to Discuss with Family

These conversations are difficult but essential:

Starting the Conversation:

Choose a calm time, not during a medical crisis
Begin with “I need to talk about my wishes if ALS progresses”
Acknowledge it’s hard but important

Be Specific:

“I do not want mechanical ventilation”
“I want BiPAP if it helps me breathe comfortably, but I want to stop if it becomes burdensome”
“I want a feeding tube to maintain nutrition as long as possible”
“I want to focus on comfort, not prolonging life at all costs”

Explain Your Reasoning: Help family understand your values and why you’re making these choices.

Listen to Family Concerns: They may have different views. Listen, acknowledge, but ultimately the decision is yours.

Document Everything: Put wishes in writing through advance directives so family doesn’t have to guess or make impossible decisions during crisis.

Hospice Can Support Whatever You Choose

Critical Point: Hospice supports patient autonomy and honors choices:

If you choose comfort care without ventilation, hospice provides expert symptom management
If you initially choose BiPAP and later decide to stop, hospice supports that transition
If you choose feeding tube, hospice manages tube feeding while providing comfort care
If you decline feeding tube, hospice ensures comfort as nutrition naturally declines

Hospice doesn’t judge your choices or pressure you toward specific decisions. The team provides information, supports you in making informed choices, and honors those choices throughout your care.

How to Start Hospice for ALS in Tulsa and Muskogee

If you or a loved one with ALS is ready to explore hospice, here’s how to begin:

Talking to Your Neurologist

Your neurologist or ALS specialist is the starting point:

Initiating the Conversation:

“I’d like to discuss hospice and what that would mean for my ALS care”
“My respiratory function has declined significantly. Is it time to consider hospice?”
“I’ve decided I don’t want mechanical ventilation. Can you refer me to hospice?”

What Your Neurologist Will Assess:

Current FVC and respiratory status
Functional decline and ADL dependency
Nutritional status
Overall disease trajectory
Your goals and preferences

Physician Certification: For hospice enrollment, a physician must certify life expectancy of six months or less if disease follows expected course. For ALS patients meeting respiratory or functional criteria, this certification is straightforward.

Coordination with ALS Clinic

Many ALS patients receive care through specialized ALS clinics at major medical centers:

Oklahoma ALS Resources:

University of Oklahoma Physicians Neurology - ALS Clinic (Oklahoma City)
Oklahoma Neurology Associates (Tulsa)
INTEGRIS Health Neurology Services

ALS Clinic Coordination with Hospice:

Sharing medical records and current medication regimens
Continuing to see ALS neurologist while on hospice (if desired and helpful)
Coordinating equipment needs (BiPAP, communication devices, wheelchairs)
Ensuring continuity of care during transition

Hospice Doesn’t Mean Abandoning ALS Care: You can remain under neurology care while receiving hospice services. Hospice focuses on comfort and symptom management while neurology provides specialized ALS expertise.

What to Expect from Hospice Team

ALS-Specialized Hospice Care Includes:

Nursing:

Registered nurses experienced in ALS care
Regular visits (frequency based on needs)
24/7 phone access for questions or crises
Symptom management expertise

Medical Direction:

Hospice physician oversight
Coordination with neurologist
Medication management and adjustments

Hospice Aide:

Assistance with bathing, dressing, personal care
Repositioning and transfers
Basic comfort measures

Social Work:

Emotional support for patient and family
Advance directive completion
Resource connection
Family counseling

Chaplain:

Spiritual support (optional, based on patient wishes)
Life review and meaning-making
Support for spiritual distress

Bereavement Support:

Grief counseling for family (continues 13 months after death)

Specialized Equipment and Resources

Equipment Hospice Provides:

Hospital bed with adjustable head/foot
Pressure-relieving mattress
Mechanical lift for safe transfers
Wheelchair (if not already provided by insurance)
BiPAP machine and supplies (if continuing as comfort measure)
Oxygen equipment
Suction machine for secretion management
Bedside commode
Bath bench and shower chair

Medications Covered: All medications related to ALS and comfort care:

Morphine for air hunger
Anti-anxiety medications
Muscle relaxants for spasticity
Medications to reduce secretions
Pain medications
Anti-nausea medications

Communication Support: Coordination with speech therapy to maintain communication devices and methods.

Resources in Tulsa and Muskogee

ALS Association Oklahoma Chapter Phone: (405) 525-9000 Website: www.als.org/oklahoma Services: ALS education, support groups, equipment loan closet, financial assistance, patient services, connection to resources

Muscular Dystrophy Association (MDA) - Oklahoma Office Phone: (405) 942-6490 Website: www.mda.org Services: ALS clinic coordination, support groups, equipment assistance, educational programs

University of Oklahoma Physicians - ALS Clinic Phone: (405) 271-4000 Address: 920 Stanton L Young Blvd, Oklahoma City, OK 73104 Services: Specialized ALS care, multidisciplinary clinic visits, clinical trials, hospice coordination

Oklahoma Neurology Associates - Tulsa Phone: (918) 493-1290 Address: 4444 E 41st St, Tulsa, OK 74135 Services: Neurology care including ALS management, coordination with hospice providers

National ALS Helpline Phone: (800) 782-4747 Website: www.als.org Hours: Monday-Friday, 9:00 AM - 5:00 PM ET Services: Information about ALS, care resources, emotional support, connection to local resources

Frequently Asked Questions

How long do ALS patients typically live on hospice?

This varies significantly. Some ALS patients enroll in hospice weeks before death when respiratory failure is imminent. Others enroll months earlier when FVC drops below 30% but may live 3-6 months or longer. The median length of stay for ALS patients on hospice is approximately 2-3 months.

Can I still use my BiPAP machine on hospice?

This depends on the hospice program and individual circumstances. Some hospices allow BiPAP as a comfort measure if it relieves air hunger without being overly burdensome. Discuss this with prospective hospice providers. If BiPAP is important for your comfort, choose a hospice that will support its continued use.

Will hospice help me keep my communication device?

Yes. Hospice teams coordinate with speech therapy and work to maintain whatever communication system you’re using. They’ll ensure devices are functioning, charged, and that all caregivers understand how to communicate with you. Your voice and autonomy matter to hospice teams.

What happens if I change my mind about ventilation after enrolling in hospice?

If you enroll in hospice choosing comfort care without ventilation but later change your mind and want mechanical ventilation, you can revoke hospice and pursue aggressive treatment. Your autonomy is always respected. However, understand that once on a ventilator, getting off is legally and ethically complex, so this decision deserves careful thought.

Will I suffocate or struggle to breathe when ALS causes respiratory failure?

No. With proper hospice symptom management, respiratory death is peaceful. Morphine relieves air hunger (the sensation of breathlessness), and anti-anxiety medications reduce fear. As CO2 levels rise, you naturally become sleepy and slip into unconsciousness. You won’t experience gasping or struggling if symptoms are properly managed. This is why expert hospice respiratory care is so important for ALS.

Can family members stay with me 24/7 on hospice?

Absolutely. Hospice at home means family can be present as much as they want. There are no visiting hours or restrictions. Many ALS families provide round-the-clock care with hospice support through nursing visits, aide services, and 24/7 phone availability.

Does hospice cover the cost of my feeding tube?

If you already have a PEG tube, hospice covers supplies, formula, and tube maintenance. Hospice typically doesn’t pay for initial tube placement surgery (that would be covered by Medicare Part B or other insurance before enrolling in hospice), but once you’re on hospice, all feeding tube needs are covered.

What if I can no longer communicate my needs?

This is why completing advance directives while you can still communicate is critical. Document your wishes about comfort measures, symptom management, and situations you want addressed. Designate a healthcare power of attorney who knows your values and can speak for you. Hospice teams honor documented wishes and work with your designated representative to ensure your comfort and dignity.

Can I receive hospice in a nursing home or assisted living?

Yes. If you need 24/7 care that family cannot provide at home, you can receive hospice services in a nursing home or assisted living facility. Hospice coordinates with facility staff to provide additional support, symptom management, and comfort care.

What happens at the moment of death with ALS?

With hospice care, death from ALS is typically very peaceful. As respiratory muscles fail and medications keep you comfortable, you gradually become sleepier, slip into unconsciousness, and breathing quietly stops. There’s no struggle or distress when symptoms are properly managed. Families often report that the death was peaceful and dignified, which is the goal of hospice care.

Conclusion: Dignity, Comfort, and Choice in ALS Care

ALS is a devastating disease, but hospice care ensures that the final chapter is marked by comfort, dignity, and respect for patient autonomy rather than suffering and prolonged dying.

For ALS patients in Tulsa, Muskogee, and throughout Oklahoma, hospice offers:

Expert management of respiratory symptoms without mechanical ventilation
Support for communication as speech fails
Honoring choices about treatment and end-of-life care
Keeping patients comfortable at home surrounded by loved ones
Supporting families through the dying process and bereavement

If you’re living with ALS and respiratory function is declining, if you’ve decided against mechanical ventilation, or if you’re simply ready to focus on quality of life rather than fighting a disease that has a certain outcome, hospice may be right for you.

Talk to your neurologist. Ask questions. Explore what hospice offers. You deserve to face ALS with expert support, maintained dignity, and the freedom to make choices about your own care. Hospice can provide all of that, honoring your journey while ensuring comfort until the very end.

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