Perceptions of hospital-dependent patients on their needs for hospitalization

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

Study Limitations

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.