In the United States, patients 65 years old or older accounted for more than one third of inpatient stays and 42% of inpatient care spending in 2012.1 Despite the identification of risk factors, the implementation of an array of interventions, and the institution of penalties on hospitals, a subset of older adults continues to spend significant time in the hospital.2,3
Hospital dependency is a concept that was only recently described. It identifies patients who improve while in the hospital but quickly deteriorate after leaving the hospital, resulting in recurring hospitalizations.4 Although little is known about hospital-dependent patients, studies have explored patients’ perspectives on readmissions.5,6 Nevertheless, it remains unclear whether there are individuals for whom frequent and prolonged hospitalizations are appropriate, and whether there are undisclosed factors that, if addressed, could decrease their hospital dependency. We conducted an exploratory study to ascertain hospital-dependent patients’ perspectives on their needs for hospitalizations.
This study was approved by the Yale University Institutional Review Board. From March 2015 to September 2015, Dr. Liu conducted semistructured explorative interviews with patients on the medical units of an academic medical center. Dr. Liu was not directly involved in the care of these patients. An interview guide that includes open-ended questions was created to elicit patients’ perspectives on their need for hospitalizations, health status, and outside-hospital support. This guide was pilot-tested with 6 patients, whose transcripts were not included in the final analysis, to assess for ease of understanding. After the pilot interviews, the questions were revised, and the final guide consists of 12 questions (Supplemental Table).
We used predetermined criteria and a purposeful sampling strategy to select potential study participants. We identified participants by periodically (~once a week) reviewing the electronic medical records of all patients admitted to the medicine service during the study period. Eligible patients were 65 years old or older and had at least 3 hospitalizations over the preceding 6 months. Patients were excluded if they met our chronic critical illness criteria: mechanical ventilation for more than 21 days, history of tracheotomy for failed weaning from mechanical ventilation,7 presence of a conservator, or admission only for comfort measures. Participants were recruited until no new themes emerged.
Twenty-nine patients were eligible. We obtained permission from their inpatient providers to approach them about the study. Of the 29 patients, 26 agreed to be interviewed, and 3 declined. Of the 26 participants, 6 underwent pilot interviews, and 20 underwent formal interviews with use of the finalized interview guide. The interviews, conducted in the hospital while the participants were hospitalized, lasted 17 minutes on average. The interviews were transcribed and iteratively analyzed. The themes that emerged from the initial interviews were further explored and validated in subsequent interviews. Interviews were conducted until theoretical saturation was reached and no new themes were derived from them. Demographic information, including age, sex, ethnicity, and marital status, was also collected.
Interviews were digitally recorded and transcribed. Independently, two investigators used Atlas Ti software to analyze and code the interview transcriptions. An inductive approach was used to identify new codes from the data.8 The coders then met to discuss repeating ideas based on the codes. When a code was identified by one coder but not the other, or when there was disagreement about interpretation of a code, the coders returned to the relevant text to reach consensus and to determine whether to include or discard the code.9 We then organized and reorganized repeating ideas based on their conceptual similarities to determine the themes and subthemes.9
Twenty patients participated in the formal interviews. Participants’ baseline characteristics are listed in Table 1, and four dominant themes, and their subthemes and exemplary quotations, are listed in Table 2.
Perspectives on Hospital Care
Participants perceived their hospitalizations as inevitable and necessary for survival: “I think if I haven’t come to the hospital, I probably would have died.” Furthermore, participants thought only the hospital had the resources to help them (“The medications they were giving me … you can get that in the hospital but not outside the hospital”) and sustain them (“You are like an old car, and it breaks down little by little, so you have to go in periodically and get the problem fixed, so you will drive it around for a while”).
Feeling Safe in Hospital. Asked how being in the hospital makes them feel, participants attributed their feelings of safety to the constant observation, the availability of providers and nurses, and the idea that hospital care is helping. As one participant stated, “Makes me feel safer in case you go into something like cardiac arrest. You are right here where they can help you.”
Outside-Hospital Support. Despite multiple hospitalizations, most participants reported having social support (“I have the aide. I got the nurses come in. I have my daughter …”), physical support, and medical support (“I have all the doctors”) outside the hospital. A minority of participants questioned the usefulness of the services. One participant described declining the help of visiting nurses because she wanted to be independent and thought that, despite recurrent hospitalizations for physical symptoms, she still had the ability to manage her own medications.
Goals-of-Care Discussion. Some participants reported inadequate discussions about goals of care, health priorities, and health trajectories. In their reports, this inadequacy included not thinking about their goals, despite continued health decline. One participant stated, “Oh, God, I don’t know if I had any conversation like that. … I think until it is really brought to the front, you don’t make a decision really if you don’t have to.” Citing the value of a more established relationship and deeper trust, participants preferred having these serious and personal discussions with their ambulatory care clinicians: “Because I know my doctor much closer. I have been with him for a number of years. The doctors in the hospital seem to be nice and competent, but I don’t know them.”
Participants considered their hospitalizations a necessity and reported feeling safe in the hospital. Given that most already had support outside the hospital, increasing community services may be inadequate to alter participants’ perceived hospital care needs. On the other hand, a few participants reported declining services that might have prevented hospitalizations. Although there has been a study of treatment refusal among older adults with advanced illnesses,10 not much is known about refusal of services among this population. Investigators should examine the reasons for refusing services and the effect that refusal has on hospitalizations. Furthermore, although it would have been informative to ascertain clinician perspectives as well, we focused on patient perspectives because less is known on this topic.
Some participants noted their lack of discussion with their clinicians about healthcare goals and probable health trajectories. Barriers to goals-of-care discussion among this highly vulnerable population have been researched from the perspectives of clinicians and other health professionals but not patients themselves.11,12 Of particular concern in our study is the participant-noted lack of discussion about health trajectories and health priorities, given the decline that occurs in this population and even in those with good care. This inadequacy in discussion suggests continued hospital care may not always be consistent with a patient’s goals. Patients’ desire to have this discussion with their clinicians, with whom they have a relationship, supports the need to involve ambulatory care clinicians, or ensure these patients are cared for by the same clinicians, across healthcare settings.13,14 Whoever provides the care, the clinician must align treatment with the patient’s goal, whether it is to continue hospital-level care or to transition to palliative care. Such an approach also reflects the core elements of person-centered care.15
Participants were recruited from the medicine service at a single large academic center, limiting the study’s generalizability to patients admitted to surgical services or community hospitals. The patients in this small sample were English-speaking and predominantly Caucasian, so our findings may not represent the perspectives of non-English-speaking or minority patients. We did not perform statistical analysis to quantify intercoder reliability. Last, as this was a qualitative study, we cannot comment on the relative importance or prevalence of the reasons cited for frequent hospitalizations, and we cannot estimate the proportion of patients who had recurrent hospitalizations and were hospital-dependent.
Although quantitative research is needed to confirm our findings, the hospital-dependent patients in this study thought their survival required hospital-level care and resources. From their perspective, increasing posthospital and community support may be insufficient to prevent some hospitalizations. The lack of goals-of-care discussion supports attempts to increase efforts to facilitate discussion about health trajectories and health priorities between patients and their preferred clinicians.
The authors thank Dr. Grace Jenq for providing feedback on the study design.
Nothing to report.