The lived experience of the hospital discharge “plan”: A longitudinal qualitative study of complex patients

Despite comprehensive discharge plans and referrals, all participants experienced delays and difficulties in accessing and receiving services. In most cases, there was no single contributing factor to these challenges; the unique experiences were a result of the complex interplay of multiple factors for each individual.

Patient Priorities

In the hospital, participants primarily identified goals of improving physical health and medication adherence. However, these goals often shifted to meeting basic living necessities and supporting others upon discharge. Barriers to adequate food and mobility were prominent themes.

One participant spoke about the challenges of supporting her son while struggling with her own health after discharge:

Well, I’ve been dying, I can’t even walk, and yet I’m the one that still has to go to WalMart, to grab milk and bread for my kid. It’s not like I need any of that stuff, because I don’t even eat. (P8, I3)

Participants were admitted on a mean of 6 medications and discharged with a mean of 14 (Table 1). In the hospital, medications are dispensed directly to patients; however, maintaining optimal adherence at home was complex. When 1 participant was asked about her medications after being home for a week, she said:

My meds, you know I have the cream that I’m supposed to put … and I can’t find it. I lost it yesterday. I used it yesterday morning and all day yesterday I’m looking, like, did it fall behind there? But, obviously, I can’t look over there [because of mobility challenges] … I don’t think I can get it covered [by insurance to replace it]. (P5, I3)

Participants found it difficult to follow a specific dosing schedule, ensure food intake corresponded to medication guidelines, and navigate the impact of substance use. Substance use for some was associated with nonadherence. A participant, explaining his quickly declining health, spoke about the impact of using crack cocaine:

Yeah, when I use I don’t think about medicating, taking my pills or anything like that. That’s not even on your mind. It doesn’t come across your mind. […] I guess, that’s part of the addictive personality. It wants to grab hold of you and say “no, focus on me, focus on me.” (P7, I4)

Others used marijuana as an appetite stimulant and a critical piece of their medication adherence routine.

This study followed complex patients through hospital discharge and transition back into the community. In the hospital, participants focused on medical goals, but following discharge basic living needs became the priority. Despite a comprehensive plan to provide support upon discharge, participants found executing and following up with referrals, services, and medication adherence was often overwhelming and not achieved in the month post-hospitalization.

Our study provides depth and context to support and understand the findings of reviews evaluating interventions to improve transitions in care.^23,24 A systematic review of interventions to decrease 30-day readmission rates concluded that comprehensive support interventions (with many components) contributed to the greatest reduction in risk of readmission.¹⁶ Components that showed the greatest impact were those that were designed to improve patients’ capacity for self-care (including their ability to access and follow through with post-discharge care plans) and those that involved more individuals in the delivery of care.²³

Our results also support and expand on other qualitative findings of complex patients. Kangovi et al.²⁵ interviewed patients with low socioeconomic status at a single time point post-discharge to identify common experiences. They summarized their findings in 6 themes: powerlessness during hospitalization; incongruence of patient and clinical team goals; competing issues influencing prominence of health behaviors; socioeconomic constraints on patients’ ability to perform recommended behaviors; sense of abandonment after discharge; and loss of self-efficacy resulting from the “failure” to follow the discharge plan. Our findings tell a very similar story but provide the additional context and understanding of the lived experience over time. We found that the transition experience was most challenging when the home environment was unstable, resulting in a shift in priorities from those set during hospitalization.

While increased support may improve outcomes, there is a need to improve awareness, integration, and support for building capacity within complex patients.²⁶ Capacity is defined here as the sum of resources and abilities that a patient can draw on, and includes physical and mental as well as social, financial, personal, and environmental capabilities and resources.²⁷ This includes understanding the potential negative impact of developing a clinical plan which, in order to operationalize, requires resources in excess of the patient’s capacity at that time.²⁷ Minimally disruptive medicine, a promising theoretical approach for improving the care of complex clients, embodies the awareness of capacity in achieving patient-centered care while “imposing the smallest possible treatment burden on patients’ lives.”²⁸

This study, although not without its limitations, provides an in-depth exploration of the experiences of a small number of patients living with HIV, recruited from a single facility in Toronto, Canada after relatively long hospital stays. There are specific context issues related to HIV, such as stigma and severe consequences for suboptimal medication adherence. Furthermore, this study took place where many urban health resources exist; complex patients in rural settings or in environments less tailored to the needs associated with complex medical, psychiatric, and social conditions may experience greater barriers in the transition process. Although this study captured data from medical charts and documents relevant to the cases, further exploration of the clinician decision-making process in creating the discharge plans and additional sources of data on health outcomes post-discharge would be beneficial.

Despite its limitations, this study provides detail and depth to understand some of the most complex patients who suffer from significant challenges in the health system and who are amongst the highest-cost healthcare users. The case study approach, with serial interviews, is an important strength of this study, enabling meaningful insight into hospital discharge processes and challenges experienced by complex patients that can inform individual-level care practice and the development of new programs and interventions.

This study builds on recent research with complex patients in calling for a new approach to clinical care.^6,29,30 In order to support complex patients through discharge, clinical goals and referrals must be made in light of a patient’s capacity in the community. Structural changes may be made to improve coordination and access to services, decreasing the burden and improving the healthcare experience. Albreht et al.³¹ highlight a number of promising programs across Europe (such as the Clinic for Multimorbidity and Polypharmacy in Denmark) designed to improve the health and healthcare for individuals living with multiple chronic conditions. Small-scale changes are also important such as increasing conversations about the capacity and limitations of individuals listed as social supports, and making appropriate and realistic referrals based on an understanding of a patient’s capacity and motivation for follow-up. Shippee et al.³² identify a list of approaches in line with minimally disruptive medicine that can be integrated into existing systems as part of a developing “toolkit” (eg, elicitation of transcendent patient goals, and integration of patient-reported outcome tracking of challenges and burdens associated with health and daily living). The findings of this study suggest that the elements of the toolkit may provide a foundation for future interventions and research to improve hospital care and discharge outcomes for complex patients.