AGING WITH SCI: CASE MANAGEMENT ISSUES AND INTERVENTIONS, A SOCIAL WORK PERSPECTIVEJeanine A. Penzo, MSW, LICSWVA Boston Healthcare System2018 Healthcare Summit

Disclosures• Presenter has no financial or non-financial interest to

disclose.

• PESG staff, PVA staff, and planning/review committee members have no financial or non-financial interest to disclose.

• This continuing education activity is managed and accredited by Professional Education Services Group in cooperation with Paralyzed Veterans of America. PESG, PVA, and all accrediting organization do not support or endorse any product or service mentioned in this activity.

Learning OutcomesAt the conclusion of this activity, the participant will be able to:

• Identify and describe SCI/D specific physical issues that complicate the aging process.

• Explore the psychosocial impact of aging with SCI/D on the Veteran’s independence, quality of life and ability to remain in the least restrictive living situation.

• Discuss common case management challenges encountered by the SCI/D Team and strategies to resolve them.

CE/CME Credit

• If you would like to receive continuing education credit for this activity, please visit:

• https://pva.cds.pesgce.com

Aging with SCI/D• Advances in emergency, acute and rehabilitative care

means living longer with spinal cord injury and diseases• Long term health interventions• Monitoring of secondary medical conditions

• Many individuals with SCI/D diagnosed as young adults are living up to 40 or 50 years with disabilities, well into their seventies and eighties

• Social workers/case managers encounter patients faced with increasing physical decline and increasing dependence for ADL’s and IADL’s which can lead to a decline in overall quality of life

Accelerated Aging in SCI• What causes accelerated aging in SCI?

• “Wear & tear”, minute /repeated damage• Possible central and immune mechanisms

• Trajectory of Aging in SCI may depend on • Severity of injury• Age at injury• Duration of injury (time aging with/without SCI)• Era of injury

• Some effects of aging relate more to duration of injury than to age, through there is some overlap

• Especially evident in some organ systems(S. Sabharwal, 2017)

Aging with SCI/D-Physical • Aging with SCI/D presents more complications than seen

in the general population as a result of already compromised organ systems (Jha et al. 2010 & 2011)

• Genitourinary System• Increased UTI’s, urinary tract stones, bladder CA

• Gastrointestinal System• Increased constipation and incontinence

• Cardiovascular System• Known to be a leading cause of death in long term SCI/D • Diminished activity may lead to insulin resistance and lowered HDL

Aging with SCI/D-Physical • Integument System

• Increased risk of pressure ulcers

• Respiratory System• Most common reason for hospitalization and death are respiratory

disorders-flu, pneumonia, sleep disordered breathing (Burns, 2007)

• Musculoskeletal System• Upper extremity overuse injuries and disuse osteoporosis

• Nervous System• Entrapment neuropathies and syringomelia

(Jha et al. 2011 & 2010)

Psychosocial Impact of Aging• As individual with SCI/D ages, he/she also struggles with

feelings of loss of control

• Decreased independence/increased dependence• Perceived loss of autonomy• Changes in familiar living situation• Decline in quality of life • Changes in life satisfaction

Supporting Autonomy“Independence when not possible physically, is still intellectually realistic…:” (Jha, et al. 2010)

• Support the Veteran’s autonomy and sense of independence while ensuring his/her safety • Include Veteran in discussions re: areas of need• Allow Veteran to participate in decision making around treatment and care

related issues• Hiring, training, firing of caregivers when they are needed

• Goals of Care Conversations are important and should take place when individual with SCI/D able to participate

• .

Case Example: Mr. L• Mr. L is a 71 year old, 100% SC, married Veteran with

Multiple Sclerosis diagnosed in 1984• Mr. L’s wife is his primary caregiver and he is also

accepting of daily assistance from HHAs to alleviate some of the burden on his wife. The couple resides in a small rural community and she is a good advocate for Mr. L. He has access to community and VA resources for health care; his wife is comfortable contacting medical providers and asking questions about symptoms, equipment problems, and general concerns.

Mr. L - Follow Up• Mr. L experienced increasing functional decline over the

past 18 months• Mrs. L expressed concern to SW regarding knowing when

to determine when aggressive disease treatments should be changed to comfort care as her husband has DNI/DNR orders• Mrs. L SW recommended meeting with veteran for Goals of Care

Conversation. Mr. L agreed and wanted wife present

• G of C Conversation reviewed Veteran’s code status, his wishes regarding involvement of family, fear of being a burden, Mr. L ‘s desire to remain & home & pay for additional services, quality of life vs. length of life

Case Management Dilemmas• Assistance needed with ADL’s and Veteran with

SCI/D is resistant to formal agency services.• Family no longer feels Veteran with declining function

and possibly declining cognition is safe to drive. Request SW/CM assistance

• The aging Veteran with SCI/D is living alone or with an ailing spouse and has become dependent for all ADL’s and IADL’s. He/she is refusing to move to safer setting

• Family does not agree with decisions the Veterans is making and wants SW/CM support in overriding them

Assistance with ADL’s• As Veterans with SCI/D require more assistance with

ADL’s and IADL’s, their spouses/family caregivers are also aging, coping with their own medical conditions • Spousal caregiver not able to meet Veteran’s increasing needs • Veteran wants spouse to assist and not strangers from an agency

• Encourage Veteran to allow VNA 2 days/ week to start• Respecting Veteran’ wishes• Provides some relief for caregiver• Once veteran has a relationship with the agency staff, he/she may

be more willing to accept additional help

Case Example: Mr. & Mrs. W• Mr. W is a 71 year old, NSC Veteran with T12 ASIA A

paraplegia since 1989. He has been independent with wife providing assistance as needed

• In 2015, Mr. S had series of strokes resulting in R side weakness and making him dependent for most of his needs

• Reluctant to accept HHA help; Mrs. W’s OA in lower back exacerbated.• Initially HHA 3 days/week in 2015. Veteran now accepts HHA 7

days/week• Veteran has used inpatient respite successfully• Mr. W reports SWLS of 29/35 in 2018• Mrs. W ‘s Zarit score dropped from 18/20 to 11/20

Driving • Driving Cessation is usually associated with cognitive

decline as one ages• For individuals with physical disabilities, functional decline

may play a more significant role.• Giving up ones driver’s license associated with loss of control and loss of

independence• Same individuals experienced grief & loss after initial injury; families often reluctant

to initiate conversations about driving

• How can SW/CM and other clinicians assist patients and families with these difficult discussions?• Suggest family conversations re: driving in general, not targeting the Veteran: how

would you feel if _________ happened while you were driving?• Have back-up plans for alternative transportation to favorite activities

• Family, public paratransit, elder services

• Offer to participate in family meeting to assist family with the discussion

Case Example: Mr. Q• Mr. Q is an 85 yo, married Veteran with an incomplete

spinal cord injury who was using a rolling walker to ambulate. He was still driving when he came to his Annual Evaluation and he made a few comments that caused the team to question his driving ability:• His wife, whom he referred to as “nervous Nellie”, would no longer

ride with him when he drove• He reported a few minor fender benders where he scraped a fence

or bumped into a wall.• A driver evaluation was recommended and Mr. Q declined

Mr. Q Follow Up• One hour later, SW who met with Mr. Q for his AE, was

leaving the VA in a government car for a home visit. Mr. Q made a wide turn in the VA parking lot and hit the SCI Homecare vehicle, causing dents in both vehicles but no bodily injury

• Mr. Q insisted that SW had been in his way, however did agree to driving evaluation after the incident• He is no longer driving and eligible for VA travel now that he is

using a manual wheelchair for mobility

Living Situation• SCI/D teams in their work promote living in the least restrictive environment after injury that will be also be safe

• Aging with SCI/D, especially after acute illness or MS exacerbation can result in the Veteran’s inability to return home• Veteran living alone no longer able to independently perform

ADL’s, take own medications, buy food, prepare meals• Veteran’s family caregiver no longer able to met his/her daily

needs• Veteran is socially isolated in his home

Living Situation (continued)• Living with family member, moving to more accessible

home/unit and/or more home services may be reasonable short term solutions

• Placement in Skilled Nursing Facility for rehab or continued sub-acute medical care does not need to be long term- beginning with agreement to short term stay may be opportunity to get patient’s initial buy-in

Case Example: Mr. H• Mr. H is 95 year old, 100% SC with C3 ASIA D SCI due to

cervical stenosis since 2007• Lived alone in own apartment until 2016 when he moved

to Assisted Living Facility (ALF). HHA 4 days week, independent going to/from ALF

• In 2018, Mr. H showed signs of significant physical and cognitive decline (falls, obvious memory impairment, MOCA 18/30)• SCI Homecare referral• Increased HHA to daily AM & PM• Veteran allowed increased involvement of his daughter

Decision Making Capacity

• There are processes in place to ensure the safety of patients when cognition declines:• MOCA administered by psychology at SCI Annual Examinations• Progress Note stating that Health Care Proxy has been invoked triggers

alert in medical record postings.• SW/CM can initiate evaluations for VA fiduciaries, conservatorship and

legal guardianship

• The more difficult discussions occur when family members or other providers disagree with decisions the Veteran (with decision making)capacity, is making.• They struggle with the concept of the loved one or patient “having the

right to make poor decisions”• The SW/CM is often expected by family members to facilitate a

discharge plan that is against the Veteran’s wishes

Case Example: Mr. E• Mr. E is a 90 year old, single, NSC Veteran, who was an

MIT researcher prior to retirement. He has incomplete quadriplegia due to a fall in 2010 and was living in ALF. Mr. E had some cognitive impairment at time of his SCI (MOCA 20/30) which worsened considerably over the past year

• NOK/HCPs are 2 nephews in NY and CA• Annual Evaluation in Nov. 2017: severe cognitive decline

noted with MOCA score of 13/ 30 which led to the following actions:

Mr. E’s Follow Up (1)• Home visit to ALF by SCI Homecare RN & SW

• Pills not taken, smell of urine, stained clothing• Veteran refusing HHA services & med management in ALF due to

additional costs, despite having the funds

• Referral to Geriatric Clinic, Elder Protective Services, and VA Psychology for capacity evaluation

• Phone conversations with nephews • Mr. E lacked decision making capacity, HCPs were

invoked• Inpatient admission to community hospital for dehydration

with transfer to VA SCI Unit

Mr. E Follow Up (2)• ALF could provide level of services now required• Mr. E refused LTC and was the only person able to

access his funds• Guardianship in process with assistance from VA (medical

certificate)and Elder Services Attorneys (guardianship petition)• Court date 9/4/2018• Nephews agreed to serve as guardians in the long term.

Family Caregiving • Aging caregiver is hospitalized, has post-op precautions,

has family death in another state and has been primary caregiver of Veteran

• Discuss available resources and services with Patients and families prior to needing them• During SCI Annual Evaluation is optimal opportunity to discuss

availability of VNA services, in-home and inpatient respite services

• Facilitate discussion on compromise between Veteran & caregiver

In Summary…• How does the SW/CM facilitate discharge planning when

there appear to be competing goals: patient autonomy and independence, patient safety, limited physical or financial resources, family control?• Family Meetings are key ( in patient or in the home)-Case example

of home care family meeting• Discuss realistic expectations of Veteran AND family members• Encourage compromise

References• Jha A., Charlifue S., Lammertse D.P. (2010), Spinal Cord

Injury and Aging. In V.M. Lin (Ed.) Spinal Cord Medicine Principles and Practice (pp. 323-331). New York, NY: Demos Medical Publishing , LLC.

• Jha, A., Charlifue, S. (2011), Aging in SCI. In S. Kirshblum & D. I. Campagnolo (Eds.) Spinal Cord Medicine (pp.500-510). Philadelphia, PA: Lippincott Williams & Wilkins Health.

• Sabharwal, S. (2017) Aging with a Spinal Cord Injury @ VA SCI Symposium, 10/18/2017.

• Stringer, H. (2017, February). Lessons for Caregiving. Monitor on Psychology. 41-46

Questions & Comments