The lived experience of the hospital discharge “plan”: A longitudinal qualitative study of complex patients
BACKGROUND
Transitions in care are a high-risk time for patients. Complex patients account for the largest proportion of healthcare costs but experience lower quality and discontinuity of care. The experiences of complex patients can be used to identify gaps in hospital discharge practices and design interventions to improve outcomes.
METHODS
We used a case study approach with serial interviews and chart abstraction to explore the hospital discharge and transition experience over 6 weeks. Participants were recruited from a small hospital in Toronto that provides care to complex patients living with human immunodeficiency virus (HIV). Framework analysis was used to compare data across time-points and sources.
RESULTS
Data were collected from 9 cases. Participants presented with complex medical and psychosocial challenges, including substance use (n = 9), mental health diagnoses (n = 8) and a mean of 5 medical comorbidities in addition to HIV. Data were analyzed and reported in 4 key themes: 1) social support; 2) discharge process and transition experience; 3) post-discharge follow-up; and 4) patient priorities. After hospital discharge, the complexity of participants’ lives resulted in a change in priorities and subsequent divergence from the discharge plan. Despite the comprehensive discharge plans, with referrals designed to support their health and activities of daily living, participants experienced challenges with social support and referral uptake, resulting in a loss of stability achieved while in hospital.
CONCLUSION
Further investigation and changes in practice are necessary to ensure that discharge plans for complex patients are realistic within the context of their lives outside of the hospital. Journal of Hospital Medicine 2017;12:5-10. © 2017 Society of Hospital Medicine
© 2017 Society of Hospital Medicine
The complexity of her relationship with her family and her unmet needs for support continued after discharge:
I try and be as independent as possible. I don’t have to call them for nothing. Because, even the other day, I called my mom and I asked her, I said, “Mom, I’m going to give you $400 [to pay back a personal loan] and I’m going to give you an extra $100, you could buy me some food.” And she goes “Okay.” But, I didn’t give it to her yet. I don’t know, she seems money hungry right now, so I’m like no, I’ll wait. (P5, I4)
In the hospital, participants frequently spoke about discharge and transition planning that was inclusive of their social support networks. However, a sense of isolation and loneliness was common post-discharge. Often, friends and family members did not provide the support that participants anticipated, but instead were sources of anxiety and stress. One participant conveyed his experience with a friend he listed as a social support:
I gave him some money to get me some groceries, to make sure I had some food in the house when I got home. He didn’t do that. All of a sudden he was called away to [another city]. He told me his father had a heart attack. He told [others] his father had a slip. I still have yet to receive my money. (P7, I4)
Discharge Process and Transition Experience
While some participants were excited about the thought of freedom of being home, others were anxious about the burdens of returning to life outside of the hospital.
I kind of feel like, yeah, I want to go home, but then I think to myself what am I going to do when I get home. Am I just going to go back to what I’ve been doing? Am I going to really change? Am I going to forget to take my pill one day because I’m home and stuff like that. (P4, I1)
The discharge process was often perceived by participants to be rushed. Some participants found the discharge meetings helpful, while others did not feel the process empowered them to engage in a meaningful conversation with hospital staff.
There was no one there with me to even help me with my brain, to think. But it’s afterwards I’m like why didn’t I say that, like that’s what I meant to say. The brain just doesn’t function that way. (P8, I2).
This participant struggled with the transition. One week after discharge when she was asked how her health was she replied:
Terrible. I’ve got no energy. I haven’t eaten for 3 days. I haven’t drank for 3 days. I’ve got diarrhea galore […] Just no appetite whatsoever. I can’t even make it up the stairs without losing my breath. If I make it up the stairs, I have to sit for 15 or 20 minutes… (P8, I3)
The weight of maintaining activities of daily living was prominent in all post-discharge interviews, in many cases accentuated by declining health. The transition to home was more challenging than participants expected; the experience was strongly influenced by the stability of their health, their environment, and the complexity of their lives.
Follow-up and Referrals
Discharge summaries included a mean of 7 referrals. All participants were referred to a case coordinator, nurse, and family physician. Other referrals included pharmacist (n = 8); personal support worker (n = 6); housing (n = 5); and food-support programs (n = 5).
Several factors led to challenges accessing and receiving services. Participants identified: difficulty with requisite paperwork; mobility and financial constraints; personal and logistical challenges with home-care providers; and competing priorities, such as caring for family. These experiences were frequently accompanied by frustration and anxiety.
Because, if I’m in [city where girlfriend lives], I will not get the support that I get when I’m home. Like my nurse comes. [She] was supposed to come and see me twice and I missed that. I missed like 4 [appointments]. You understand? Certain things I’ve been missing. (P6, I4)
When one participant was asked if she had followed up with the food support program she had been referred to, she responded:
Oh, baby, no. I’ve been so confused. I’ve had ODSP [referring to Ontario Disability Support Program, a government disability program] on my case. I’ve got all the files all mixed up. My worker’s a real bitch. She hates me, big time. I was supposed to go bring in papers today, but I couldn’t get out of bed. I don’t know how much trouble I’m going to be in with ODSP now. (P8, I3)
