Case #5 – John
Presenting Problem / Background
John, a 46-year-old Caucasian male who is living with HIV, is admitted to the acute care hospital after a community health nurse found him in his apartment unconscious from a drug overdose. John uses street drugs (including intravenous drugs) as well as prescription drugs.
One day later, with the immediate crisis over, John is medically stable, fully conscious and is insisting on being discharged from the hospital. His behaviour in hospital has been difficult to manage. He removes all his lines and tubes, presents with sudden outbursts, offensive language and refuses to eat that is sometimes expressed with a thrown meal tray. The treating physician feels that John still requires another day or two of monitoring and has some concerns about his uncontrolled viral load (>100,000 copies/ml blood) and low CD4 count (89 cells/mm3) which John does not appear to be concerned with. There is also a question of his ability to care for himself given his extensive medical history and repeat admissions. While John’s personality is usually confrontational, he appears to be particularly agitated on this admission.
Subjective
Past Medical History
John’s medical history includes a six-year known history of HIV. He has a history of diabetes and as a result, had a left below knee amputation four years ago. He usually wears a prosthesis. Two years ago he was admitted to the intensive care unit (ICU) for sepsis from a wound infection on the site of his left below knee amputation. He has also been seen at the hospital for two drug-related admissions in the past 18 months. John is currently being followed by a community health nurse for dressing changes of a similar wound that has not healed. As a result, he has not been able to use his prosthesis and lately has been using a wheelchair for outdoor ambulation and crutches in his apartment.
John has peripheral neuropathy secondary to his diabetes leaving him with a mild decrease in sensation in both lower extremities (right foot and left at amputation site) and hands. At times he finds that he stumbles while walking with his prosthesis and has difficulty with some manual dexterity tasks, and now has difficulty navigating the wheelchair.
While HIV medications have been offered to him in the past, to-date he has declined to take them, as he is afraid that his roommates will learn of his HIV status. He lives with friends in a small 3rd-floor apartment (with elevator access) and is very eager to go back as soon as possible. His friends have their own health challenges, and they live together to pool their disability allowances. He has been on long-term disability for 5 years and wants to eventually get back to work, but is concerned about his ability to keep up with the demands of work in light of his addiction to prescription medications and fluctuating energy levels. He previously worked as a respiratory therapist in a community hospital. His energy levels fluctuate, and some days he needs to sleep in the afternoon for 2 to 3 hours. When his energy is low he finds it difficult to exert himself; he is not sure that he can maintain a full day of work.
The rehabilitation team has been asked to see him to provide recommendations on how to optimize his care.
Objective
Upon entering his hospital room, John is found lying on the ground covered in cereal and the remaining food items from his breakfast tray. He is fully conscious, alert and oriented but appears emaciated. He reports having climbed down onto the floor because the bed was too soft. John demonstrates he is fully capable of transferring back up onto the bed and then into a chair but does so impulsively and recklessly, without regard for the use of safety features such as the brakes on his wheelchair or consideration of the positioning of the chair.
Guiding Questions
1. What are some of the (a) impairments, (b) activity limitations and (c) participation restrictions that John is currently experiencing?
Notes: Consider the physical, cognitive, social, emotional and psychological challenges faced by John and classify according to the ICF Framework. Keep in mind how his disability may include fluctuations that are episodic in nature and characterized by periods of wellness and illness (good days and bad days).
Some examples might include:
- Impairments: fatigue, weakness, agitation, decreased sensation, decreased balance, decreased dexterity, impaired insight and judgment, skin integrity.
- Activity Limitations: difficulty carrying out day-to-day activities, decreased mobility (wheelchair and use of prosthesis).
- Participation Restrictions: difficulty/barriers in returning to work, financial challenges, risks to maintaining personal safety, nature of social support from friends/roommates, fear of stigma with HIV disclosure.
2. What added complexity does the episodic nature of John’s disability have on his overall health?
Notes: Consider the ups and downs that come with living with HIV and the uncertainty that comes with it. What happens if John is unable to use his prosthesis, what if he has another wound infection? What if his diabetes remains uncontrolled and results in another amputation?
3. What added complexity does John’s concurrent health conditions have on his overall health?
Notes: HIV, diabetes, substance use, previous amputation. Neuropathy related to diabetes. He is at risk of developing further complications due to HIV and diabetes.
4. What additional factors should be considered?
- Nutrition: As John has diabetes, nutrition support is crucial. Are there any issues regarding weight loss, nutritional habits or other needs (e.g., food security)? Suggest referral to a dietitian. If appropriate and if necessary, discuss options for community food banks, community suppers, food boxes and community cooking support programs (which also provide social support).
- Review sleep and rest /stress management. If required, follow up with a pamphlet, discussion or referral for good sleep hygiene.
- Refer to an addictions counsellor to address his substance use and provide education on safe injection practices.
- Determine if John has a reliable mode of communication to ensure contact with health professionals. Alternatives may include landline, cell phone, leaving messages with someone who is in regular contact and knows of his HIV status.
5. What are some of the short-term and long-term rehabilitation goals for John?
Notes: Consider patient values and preferences, and principles of shared decision-making, when discussing and developing goals. Use the SMART principle.
Short-term goals include:
- To improve motivation to become independent with ADLs (dressing, toileting, bathing) in 2 weeks.
- To be able to consistently perform safe and independent transfers to prevent further injury in 2 weeks.
- To be able to mobilize safely in the wheelchair 200 metres in 2 weeks.
- To be able to ambulate with his prosthesis 100 metres in 2 weeks.
- To be assessed for cognitive impairment which may be exacerbating his agitation.
Long-term rehabilitation goals might include:
- To link with community-based supports to reduce his isolation regarding his HIV diagnosis.
- To link with supports that can help John in decision-making (e.g., whether to start HIV medication and to take steps to manage his substance use).
6. What are some of the potential treatment strategies that might be used to address John’s impairments, activity limitations and participation restrictions?
Notes: Consider patient values and preferences as well as key medical issues when discussing treatment strategies. It is important that the strategies used to address John’s challenges take into account the ICF. By setting goals that address his impairments, this can lead to improvements in his activity limitations and participation restrictions. Consider using the process of shared decision-making to prioritize treatment choices/strategies, and provide rationale. Priorities include addressing his agitation, safe transfer and mobility training with a wheelchair, wound care, upper extremity strengthening exercises, lower extremity strengthening – quadriceps and hamstrings, ADL training and seating assessment. John may also require neurocognitive interventions if he demonstrates cognitive impairments during the cognitive assessment.
Recordkeeping (e.g., tracking of exercise, medications, and other self-management techniques) may help John to maintain his goals. If John seems overwhelmed, suggest that he set one goal for the day to provide a purpose for getting up. Additional strategies may include keeping a daily reflection record, especially to identify items for discussion at the next healthcare appointment, teaming up with a friend or buddy to share an activity and be reminders for each other. All clients should also be encouraged to engage in some type of cognitive activity (e.g., reading, word games, or games on his cell phone). Mindfulness strategies (for example, mindful meditation) may help John to manage his symptoms, stress and uncertainty.
7. What kind of educational health promotion, prevention, care, treatment and support materials or information might you provide for John?
Notes: John would benefit from reviewing the practical guides and booklets published online by CATIE, particularly the resources that address emotional wellness, nutrition and recommendations for living healthy with HIV. CATIE also provides a variety of educational materials regarding common concurrent conditions such as diabetes. Education regarding wound care is also warranted. However, in his present state, he may benefit from a peer support volunteer to help him go through relevant sections and discuss the options. The local CBHO may have trained peer support volunteers available if John is willing to participate.
If John really intends to return to work, he can be referred to local vocational services where available.
8. What other health or social services might John also benefit from having access to? Why?
Notes:
- CBHO provide a wide range of services to those living with HIV in Canada.
- Many people benefit from peer support programs. If referral is to a non-HIV peer support program, the program should be screened for policies around discrimination, and there should be a discussion as to whether disclosure of HIV status is needed.
- John will benefit from a referral for addictions counselling.
- Referral to OT or PT for seating assessment.
- Eventual link to an Employment Action Program at his local CBHO or other community organization to help facilitate his re-entry into the workforce.
- Diabetes support organizations.
9. What issues might John need you to help him advocate for?
Notes: John may need your help to acquire mobility devices (and a new prosthesis if needed). He may also need your help with income support. If John decides to investigate his work choices once he has stabilized he may need your help to access vocational rehabilitation services
Medical Management – Infectious Disease Specialist Recommendations
Assessment: John is living with untreated HIV and diabetes, which resulted in an amputation. Wound management continues to be a challenge along with behavioural issues.
Plan:
- Counsel to initiate combination antiretroviral therapy as well as Septra and azithromycin prophylaxis.
- CT head to rule out focal frontotemporal pathology as patient is behaving in a significantly erratic and disinhibited fashion.
- Referral to addictions counselling/harm reduction services.
- Referral to community psychologist.
- Optimize his glycemic control – this is likely contributing to his poor wound healing and neuropathy.
- Assess for other complications related to diabetes (e.g., ophthalmology).
- Discuss the pros and cons of if and when to begin HIV treatment.