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Amputations and Life Care Planning, Psychological Issues, and Vocational Considerations
Compiled by
Roger O. Weed, Ph.D., LPC, CRC, CDMS, CLCP, CCM, FNRCA, FIALCP
Professor and Coordinator, Graduate Rehabilitation Counselor Training, Georgia State University
Cultural Differences
• Language can be a major barrier• Evaluate for: family dynamics, perceptions of healthcare/ illness, compliance issues, & beliefs
• Illness affects cultures differently:– African Americans with vascular disease are
4x more likely to have lower limb amputations than other groups with similar medical cond.
• Needs more research
Recommended AssessmentsEVALUATE:• Physical• Psychological• Home environment• Transportation• Available resources
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Physical Assessment
• Limb is evaluated noting appearance, color, temperature (thermography), and skin texture
• Limbs are palpated—muscle strength, range of motion, and functional mobility typically compared to unaffected limb
• Chest X‐ray, electrocardiogram, blood tests—esp. for platelet count
Psychological Issues
• In some countries, amputation due to sentence for criminal activity“Theft is punishable by the amputation of the offender’s
right hand. For a second offender, the punishment is amputation of the left foot .”
• Self image • Chronic pain
Home Assessment
• Depends on level(s) of amputation• May need
– Accessible entry for wheelchair– Wider doorways– Modified kitchen– Modified bathrooms/showers– Added entry to sleeping area– More storage for supplies/equipment– Fire/security system (monitored) – Special equipment (patient lifts, assistive tech, shower aids, stair lifts, etc.)
See Karl, J. & Weed, R. (2007). Home Assessment in Life Care Planning. Journal of Life Care Planning 5(4), 159‐171
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Transportation
• Depends level(s) of amputation • May need fully accessible van with floor mounted joy stick and mouth stick key pad for triple amputation (both arms at shoulder and one leg – see next page)
• Or, only need hand controls as a back up to lower extremity amputation complications.
See Weed, R. & Engelhart, L. (2005). Vehicle modifications: Useful Considerations for life care planners. Journal of Life Care Planning 4(2&3), 115‐125
Note: left leg is prosthetic
Psychological Preparation• Prepare for pain—phantom limb pain (PLP) or
residual limb pain (RLP)– See more details below
• Prepare for loss of independence• Prepare for life as an amputee
– Important to refer to a local prosthetic service center for a pre‐amputation consultation‐‐‐offers a realistic view of lifestyle
• Prepare families for ways to support and community resources available
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Counseling
• 30% show signs of clinical depression • Sense of grief and loss
– Fear, denial, guilt, anger
• Bereavement counseling has been shown to help cope with loss
• CBT helps reduce anxiety & challenge negative/distorted thoughts– Relaxation, visual imagery, pain management
Counseling Cont.
• Technique used depends on the individual‐‐‐consider cultural issues
• Be sure to include family members and community resources
• Recognize that younger amputees generally deteriorate in their psychological functioning over time compared with older amputees
Counseling Considerations• Body image can be a major issue
– Study of 19 amputees—6 of 8 females and 3 of 11 men said change in body image more intrusive handicap than the impairment of function
– Dreams of a healthy/complete body
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Counseling Considerations
• Impaired sexual function– 77% of males & 38% of females reported
decrease in sexual functioning– Study of male amputees, 90% interested in
sex, 67% sexual dysfunction – Effects of amputation on sexual activity—
most consistent predictor of depressive symptoms
Counseling Considerations• Reasons for decreased sexual activity:
– Impaired sexual functioning– Pain during sex due to amputation– Decreased interest– Decreased mobility– Unwilling partner– Feeling self‐conscious– Fear of poor performance/injury
Vocational Impact
The success of rehabilitation depends on many variables, including the following:
• Attitude of client• Level, number and type of amputation• Type and degree of any resulting impairments and disabilities (secondary injuries)
• Overall health of the patient• Family support• Use of prosthesis/prostheses
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Vocational Implications• Depends on reason and location of amputee• Functional limitations include motivity, mobility, sensory limitations,
atypical appearance, sensory, & exertional• Unilateral below knee requires ~10% more energy to walk• Unilateral above knee requires ~60% more energy• Hemipelvectomy requires ~75% more energy • Weight gain/loss 10%+/‐ affects fit so may lose work time for Tx• Heat with prosthesis can be very uncomfortable• The better educated, the better the work prognosis• More likely to work than average person with disability
Return to Work Rates
• The extent to which amputation affects ability to work is a function of age, education, work experience, and psychological adjustment to the disability
• Individuals with limb loss: 6 in 10 work• General population of individuals with disabilities: 3 in 10• Centers of Excellence probably better outcome
(Weed & Atkins, 2004; Weed, Kirkscey, Taylor, & Mullins, 1997)
Vocational Rehabilitation Goals
The goal of rehabilitation after an amputation is to help the patient return to the highest level of function and independence possible, while improving the overall quality of life ‐ physically, emotionally, and socially.
In order to help reach these goals, amputation rehabilitation programs may include the following:
• Treatments to help improve wound healing and stump care• Activities to help improve motor skills, restore activities of daily living
(ADLs), and help the patient reach maximum independence• Exercises that promote muscle strength, endurance, and control• Fitting and use of artificial limbs (prostheses)• Pain management for both post‐operative and phantom pain
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Vocational Rehabilitation Goals (Continued)
• Emotional support to help during the grieving period and with readjustment to a new body image
• Use of assistive devices• Nutritional counseling to promote healing and health• Vocational counseling• Adapting the home environment for ease of function, safety,
accessibility, and mobility• Patient and family education
Vocational Impact
• Americans with Disabilities Act (1991) – prohibits discrimination
• Smith‐Fess Act (1920) – providing funding for counseling, training, prosthetic appliances, and job placement for the physically disabled with industrial injuries.
• Vocational Rehabilitation Act of 1965 – authorized construction of rehabilitation facilities, and generally expanded services, including the extended evaluation and assessment of persons with disabilities.
Workplace Accommodations and Assistive Devices
• Wheeled carts (for transporting material)• Reachers• Long handled grippers• Thickened writing implement• Adapted computer keyboards• Automobile modification• Example work assistive devices for upper extremity, next page.
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Texas Assistive Devices (p. 1 of 2)
http://www.n-abler.org/
Recreation
• Shower/Swim legs (and upper extremity)• Golfing• Ski (water and snow)• Fishing• Photography• Hunting• Biking• Etc. , etc.
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Questions for the O & P to ask
1. Is the life care planner certified?• If not, is he or she Board eligible?• If not, any training?Weed, R. (December 1, 2001). Contemporary Life Care Planning for persons with amputation
(cover story). Orthotics and Prosthetics Business News, 10(23), 20-22, 24, 26, 28, 30.
2. Under what “industry” rules is the plan being completed?
3. When outlining the needs of the client, did you (the prosthetist/orthotist) consider the age, activity level, functional level and life style of the client? Active vs. sedentary?
4. Will the plan reflect expected changes for client related to aging?
5. Is the client a child? If so, did you consider the effect of growth and activity level on prosthesis replacement and maintenance schedules?
• Also, did you project expected replacement and maintenance as an adult and throughout their lifetime
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6. Do your recommendations include provisions for
• temporary prosthesis, • supplies, • maintenance, • replacement schedules, and • therapies for initial use and replacement
training?– Based on hard “data” rather than personal opinion.
7. Are your recommendations in writing or did you provide them verbally and the life care planner took notes?
• If notes, ask for a copy to make sure the record accurately reflects your views.
8. Can an economist take your recommendations and calculate a “bottom line” figure?
• Did you specify the relevant “L” codes, costs, frequency, and duration of each entry
Potential Complications (p. 1 of 7)
Phantom Limb Pain• 70% experience PLP • Can continue long term—59% at two
years• PLP is more common than residual limp
pain (RLP)• Often associated with older age, AKA,
other medical problems, and low adjustment to amputation.
• Pain prior to amputation can contribute to development of PLP
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Phantom Sensations/Pain (2 of 7)
• Sensation is the feeling that the limb is still present.• Pain refers to sometimes debilitating pain.• Treatment includes
Warm wet clothMassage Remove prosthesisShrinker sockMedications (e.g. baclofen, tizanadine, Topamax, , Lidocaine patches, Zostrix, Mexitil
andMarinol and tricyclic antidepressants such as amitriptyline or trazadone, gabapentin (Neurontin), and carbamazepine)
Acupuncture/acupressure BiofeedbackHypnotherapy Transcutaneous electrical nerve stimulation (TENS)Plus many alternative medicine options
Source: www.pc.rhul.ac.uk/.../PS1061/L6/PS1061_6.htm
Potential Complications (p. 4 of 7)
Residual Limb Pain• 57% experience RLP• 21% have RLP at two years• Less prevalent than PLP, but is typically experienced with greater intensity and impacts daily functioning
• Can be related to other medical problems or low adjustment to amputation
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Potential Complications (p. 5 of 7)
• Chronic skin breakdown/wounds on stumps and at site of anticipated prostheses that require additional skin grafts, skin flaps and/or other surgery.
• Hypertrophic scarring which may require surgery to correct.• Increased phantom pain or phantom sensations that require
medication and/or other treatment (neuromuscular stimulation, etc.) to treat.
• Orthopedic or neurologic problems including poor posture due to altered gait, back problems and back pain related to abnormal gait, osteoarthritis in knee and/or knee contractures, neuromas, heterotopic ossification and/or bony overgrowth or bone spurs on stumps which are more significant than expected and which require additional surgery to correct.
Potential Complications (p. 6 of 7)
• Significant weight gain and/or loss which affects prostheses fit and requires more adjustments than expected, including more frequent replacement of sockets and/or prostheses than expected.
• Vascular compromise or other vascular issues that require treatment, including medication.
• Increased risk for falls and re‐injury due to impaired mobility skills and increased fatigue associated with bilateral lower extremity prosthetic use.
• Poor psychological adjustment to disability and functional limitations.
Potential Complications (p. 7 of 7)
• Failure to maintain prostheses and/or perform proper skin care which results in increased maintenance, replacements and/or increased stump skin problems. Stability of prostheses also may affect client’s functional abilities.
• Excessive sweating that affects fit of prostheses and durability of liners.
• Need for prescribed medication related to amputations
• Burns have special problems associated with skin integrity and care
• Overall – a good, comfortable fit is essential!
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Outlook• Technology has made great gains, esp. in the
area of prosthetic rehab– See next page for recreation related
• Adaptive equipment/supplies continues to improve, increasing activities of daily living, recreational activities and quality of life
One handed opening jars
One handed hair dryingOne leg and
prosthesis off? Roll around home
Resources (p. 1 of 5)
• Amputee Coalition of America (ACA)A nonprofit, amputee consumer educational organization thatprovides educational materials, newsletters, magazines, and a peer support network. 900 East Hill Avenue, Suite 285 Knoxville, TN 37915 1‐(888) 267‐ 5669 http://www.amputee‐coalition.org
• National Library of Medicine, National Institutes of Health – http://www.nlm.nih.gov/medlineplus/amputees.html
• For upper extremity research related informationhttp://www.medschool.northwestern.edu/depts/repoc/sections/researc
h/projects/upperlimb/uplimb_imes.html
For people with a disability who work in agriculture (http://www.agrabilityproject.org/)
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Another resource for persons with disabilities who work in agriculturehttp://pasture.ecn.purdue.edu/~agenhtml/ABE/Extension/BNG/Resource%20Center/resourcecenter.html
Off the shelf help or custom designed at Georgia Tech
www.catea.org
Publications
Contact: www.amputee-coalition.org• inMotionmagazine is published bimonthly for amputees, caregivers and healthcare
professionals, providing timely and comprehensive information. • Connections - The Amputee Coalition of America's Multicultural Publication.• First Step - A Guide for Adapting to Limb Loss, containing articles on the physical
and emotional stages of the amputation process - from surgery to regaining an active and full life.
• Expectations: Parenting Children and Teens with Limb Differences is a publication for parents and caregivers of young amputees.
• The Communicator, a bimonthly newsletter for amputee support group leaders. Also• One-Handed in a Two-Handed World: By Tommye-Karen Mayer, published by
Prince-Gallison Press, Boston, MA, 617/367-5815
Contact: www.amputee-coalition.org
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Selected References • Meier, R. & Weed, R. (2004). Life care planning for the amputee. In
R. Weed (Ed.) Life Care Planning and Case Management Handbook (2nd ed, pp 281‐312). Boca Raton, FL: CRC Press.
• Weed, R. & Atkins, D. (2004). Return to work issues for persons with upper extremity amputation. In R. Meier and D. Atkins (Eds.). Functional Restoration of Adults and Children with Upper Extremity Amputation, 337‐351. Demos Publishing.
• Meier, Brown, M, Helm, P., & Weed, R. (2004). Life care planning for the burn patient. In R. Weed (Ed.) Life Care Planning and Case Management Handbook (2nd ed, pp.351‐380). Boca Raton, FL: CRC Press.
• Weed, R., Kirkscey, M., Mullins, G., Dunlap, K. & Taylor, C. (1997). Return to work rates in cases of amputation. Journal of Rehabilitation Outcomes Measurement, 1(4), 35‐39.
Presenter BioRoger O. Weed, PhD, LPC, CLCP, CRC, CDMS, CCM, FNRCA, FIALCP
Roger O. Weed, Professor and graduate rehabilitation counseling coordinator at Georgia State University, is a Licensed Professional Counselor, Certified Life Care Planner, Certified Rehabilitation Counselor, Certified Disability Management Specialist, Certified Case Manager, Fellow of International Academy of Life Care Planners, and Fellow of the National Rehabilitation Counseling Association. He has authored or co‐authored approximately 150 books, reviews, articles and book chapters.
He has been honored several times for his work including the 2006 Distinguished Professor Award from Georgia State University’s Alumni Association, 2005 Lifetime Achievement Award, from the sponsors of the International Life Care Planning Conference, 2004 Lifetime Achievement Award from the International Association of Rehabilitation Professionals (as well as recognition in 1997 and 1991 as the Outstanding Educator), the 1993 National Professional Services Award from the American Rehabilitation Counseling Association, and 2003 Research Excellence Award from the College of Education at Georgia State University. In addition, he is listed in several editions of Who’s Who in the World.
Dr. Weed is the ethics chair for the International Academy of Life Care Planners and Associate Editor of the Journal of Life Care Planning. He is one of the five founders of the national training program leading to life care planning certification. He is also past‐chair of the Georgia State Licensing Board for professional counselors, marriage and family therapists, and social workers, as well as past‐president of the National Association of Rehabilitation Professionals in the Private Sector (now known as the International Association of Rehabilitation Professionals ).
