Five core themes were identified from the interview data: patient over person (the non-medical needs and characteristics of patients’ were ignored); uncertain and confusing process (the length of the waiting time was uncertain and the decisions made by formal care providers did not make sense to carers); inconsistent quality in care delivery (carers were generally frustrated by the lack of time and oversight from care providers); carers addressing the gaps in the system (carers continue to provide care for their loved ones and advocate for their needs); and personalization of long-term care (carers, for the most part, were eager for their loved ones to be placed into long-term care as long as the setting catered to the patients’ needs and preferences and was located close to family). The first three themes captured what carers observed when the patient was ALC. The fourth theme captured what carers did while the patient was ALC and the final theme captured what carers wanted post ALC. Below we describe each of the themes and include illustrative quotes taken from a range of participants. Quotes with […] refers to text removed due to length and redundancy.
Patient over person
When patients have an ALC designation they are no longer in an acute phase of treatment. Despite the acute phase of treatment being over they continue to have other needs related to personal care (activities of daily living, assistance with meals) and comfort. Carers understood why staff prioritized patients with urgent and acute care needs but felt that their family members should not be ignored. Carers were frustrated when “little things” (such as basic personal hygiene) were not attended to because they were important aspects of personal dignity. It appeared that responding to personal care needs (as opposed to medical intervention) was a priority for carers of patients at this stage.
“I look at certain times, you know, where my dad is not tended to. […] And I know it’s not easy. … They’re not shaved, they’re not combed, they’re not dressed properly.” Carer 5
Carers noted that patients need encouragement and prompting from care providers in order to have their needs met but these personal touches to care were uncommon.
“…he won’t ring the bell if he has to go to the bathroom or he won’t tell you if he has pain. … you have to encourage him – Do you have to go to the bathroom? Or take him every 2 to 3 h. And they told me, “Well…” Carer 6
Carers understood the behaviors of patients, their histories and roles. For instance, a carer was surprised when a case manager did not realize that her mother was a former nurse. The carer felt that her mother (who was not keen about going into long-term care) likely knew what was happening when being assessed and potentially shaped the information she shared with them (presented as more independent than she actually was).
“Well, my mom didn’t like her much. [laughs] And my mother being an old retired nurse, she was pretty feisty. And I was a little surprised that this lady didn’t know that my mom was a retired nurse and that she had worked at [organization name]. […] like once we got into the conversation, my mom could relate to exactly what was happening.” Carer 10
Likewise, other carers shared insight on the factors that triggered patient behaviors. A carer, who used to be a hospital nurse, explained why her Mom may have been acting out.
“I said even if she were to fall, break her hip, get pneumonia, die… And that may sound harsh but that’s the reality […] as long as she had that quality of life where she could still get around and do things. […] the reason why she’s screaming and all this sort of stuff is because she can’t get out of her chair. You guys have buckled her in. She’s used to being independent and walking around. […] I’d much rather see her fall with her walker than be bound in a wheelchair.” Carer 8
In this case it appeared that protecting a patient from harm (a fall) by buckling her in her seat impacted her autonomy and dignity, resulting in a responsive behavior. These and other dignity and risk trade-offs were observed by the carers and represented the priorities of staff (safety) versus the priority of patients and carers (freedom and dignity).
Some carers felt that the hospital setting was poorly aligned to the perceived needs and preferences of the patients. The hospital environment and pending LTC placement appeared to be particularly difficult for younger patients who resisted living in an environment with “old people.”
Among older patients, particularly those with dementia, the hospital environment was also resisted at times. For instance, the site of one of the ALC wards was a former psychiatric hospital which carried a certain stigma for patients:
“…because she doesn’t want to go back into that place. She thinks it’s for the crazy people […] And I keep telling her, no, mom, […] it’s the overflow […]. And she just doesn’t… She knows but then she doesn’t know. You know what, within 2 min, she says, “No, no, no.” But it’s hard.” Carer 12
In summary, carers suggested that the person tends to be overlooked within an environment geared to the patient. Carers delineated the small but important things that warranted more attention from health staff as well as critical trade-offs that occurred. These trade-offs (particularly between safety and personal independence and dignity) had implications for the quality of life and care experience of patients and carers.
Uncertain and confusing process
After a period of time in hospital, all patients were placed on the waiting list for LTC. Some carers were unclear if LTC was the best option. For instance, one carer was hesitant about placing his wife into LTC after visiting one of the sites:
“But after I seen one, I said no way, I’ll look after her. If I have to quit working, I said I’ll look after her. I can’t in good conscious warehouse her in a facility like that and forget about her. No way. We don’t do things like that.” Carer 4
Providers, at times, disagreed as to where the patient should wait for LTC. In one case a carer felt relieved when a specialist sided with her and informed a community care coordinator that the patient could not go home.
In some cases hospital and CCAC staff encouraged or pressured carers to take the client back home as they waited for LTC. In all cases this was met with resistance. A carer recalled a discussion with her son regarding the suggestion from hospital staff that her husband return home to wait for LTC:
“Yeah. Well, they seemed to be very pushy in, you know, getting him out of there, out of the [hospital]. I guess they needed the beds or something. And he [her son] says, “Mom, I think we’ve been railroaded.” We didn’t like the way it was going. They were suggesting that he come home. And we said no because I don’t know if I could cope with that and I think it would have been too much for me.” Carer 1
Being on a waiting list for LTC did not ease feelings of uncertainty. While carers were able to select their LTC home preference and switch their choices thereafter (sometimes with consequences such as being placed further down the list), when and how the placement would actually take place was unclear. One carer feared that a facility would refuse her son given his high care needs. Many were confused and frustrated about the selection process for LTC, particularly how people were prioritized on the waiting list:
“We know people who have been there less time and been exactly where they wanted to go. And maybe there’s more spots for women than men, I don’t know […] No one will tell us anything. You phone [community agency] and it’s all, “Oh, you know, he’s on the list.” I’ve been told that because he’s safe and taken care of at [hospital], he’s not a concern to move him […] And I feel when the time comes to get everyone out of there, he’s just going to be stuffed somewhere.” Carer 6
In one case, a carer started to prepare for her father to come home which entailed making structural adaptations to his home and purchasing equipment. As her father’s needs worsened the discharge destination was switched from home to LTC and it was determined that he should not leave hospital as he waited. Changes in the patient’s health and various inputs from members of the care team created an uncertain and confusing time for this carer as well as some unexpected expenses.
Waiting for LTC was often characterized by multiple moves within and between hospitals. A carer talked about the implications of this for her father with Alzheimer’s disease:
“But I just didn’t think it was fair for my dad having dementia or Alzheimer’s to go from… You go from one unit and you’re settled, and you’ve got these nurses. Then you go from there, you go to 3-south, to 2-south, to 2-north, to 4 and then 5. So he went for 5 moves.” Carer 6
Patients who had longer periods of ALC were often charged a co-payment as they waited for a LTC bed from the hospital. Issues of fairness were raised among caregivers who had mixed feelings about being charged for their stay despite receiving little to no service.
Ultimately, carers commented that being placed on a wait-list should not follow a “one size fits all” approach:
“And I think when they’re looking at the cases, they need to remember that everybody is different […] Even though your process in how you get them say into a nursing home is the same, you can’t say that you do that for everybody. You can’t send everybody home and put in services, and expect them to be able to stay at home.” Carer 15
In summary, being put on a waiting list for LTC as well as the location where patients should wait was not always agreed. If and when consensus was reached the process was still unclear. Multiple moves within and between hospitals and feeling “pushed out” were common experiences. The process of being put on a waiting list seemed almost mechanical without much individual tailoring during the process.
Inconsistent quality in care delivery
Carers noted that the care delivery experience and interactions with staff were of mixed quality. While many had positive interactions with staff, they were overshadowed by frustrating moments. For instance, carers noted that providers did not have time to give the care that they felt their loved ones needed:
“The staff here are wonderful but they’re just over-worked. They don’t have the time to sit with each person that’s on that floor to help them with their meals.” Carer 2
Some carers believed that lack of care and attention led to poor health outcomes:
And I find that [hospital] deconditioned my dad. […] not taking him to the bathroom as often, and finding him like on the side of the bed with his cast almost down to his knee or past his knee because that’s where his injury was, because he had to go to the bathroom. And he didn’t know better to ring.” Carer 6
Some carers described how their experiences changed at different points of the patients care trajectory, particularly as they transitioned from having medical needs to having an ALC status. A carer for her son with an acquired brain injury (ABI) was generally satisfied with the care received before he became ALC. As an ABI patient he was surrounded by a multidisciplinary team including mental health providers and social workers who were able to guide the family as they made critical decisions regarding the patients care. The carer observed a change in the quality of care when her son was transferred to the ALC ward:
“The care is very good. I have found with some transfers, we’ve sort of had to keep our finger on the pulse of things just to make sure that the continuity of care… And I did mention that to one of the ward managers, that I found that some things kind of fell through the cracks when there was transfer…” “Carer 14
Some carers lacked trust in the hospital staff and were skeptical about what happened when they were not around:
“When she was in [hospital], I don’t know whether they gave her some medication or what but she was so confused. She was talking about something that wasn’t even making any sense […] But when I talked to them about it, they just kept saying she’s just mixed up.” Carer 3
In summary, carers had mixed views about the quality of care received. Carers noted a stark contrast between ‘pre ALC’, which tended to be more coordinated and timely and ALC care when needs were neglected. Some carers lacked trust in the care staff and were uncertain about whether important tasks were completed in their absence.
Carers addressing the Gaps in the system
Carers continued to provide care while their loved ones were in hospital despite feeling stressed and discouraged. In addition to caring for their family member in hospital, carers had other responsibilities including paid employment, child rearing, caring for other family members and, in a few cases, managing their own disabilities. While the vast majority expressed feelings of frustration, stress and fatigue others appeared more resigned, and perhaps accepting of their circumstances, even if not ideal. In one interview, where 3 children caregivers participated, feelings of guilt were expressed, not as a result of caring for their father who was the care recipient with ALC, but from their mother who continued to live at home, with dementia, and did not agree with the care decisions they made. In all situations carers continued to provide care for their loved one in hospital, particularly by doing the activities that the hospital staff did not do (at least not in the way that the carers felt sufficient). These activities included assisting or encouraging their loved ones with activities of daily living, meals, going for walks and socialization (e.g. visiting, taking them home on a weekend pass, and activities in hospital if available).
A carer stated that she wished the hospital did more “so it’s not all up to the family member.” Carer 11. This carer associated such lack of activity with decline: “You might be continent when you arrive but you’re incontinent when you leave.”
Formal providers, at times, expected carers to do tasks that they did not have time to do, including mobility activities:
“I’m thinking, well, maybe he should get more rehab. Well, I had a comment said to me [from provider], “Well, then you know what, why don’t you come and walk your father?” Carer 6
This carer expressed a great deal of frustration at the expectations that providers had of the family. She felt that her father was declining functionally due to lack of activation. She coped by advocating for his needs.
Advocating for the needs of patients was common among caregivers, particularly adult children as opposed to aging partners. They effectively ‘worked the system’ to get a desired outcome. In some cases, carers were currently in (or retired from) health care provider roles which afforded them an ‘insider’s view’, helping them navigate the system and ask the right questions. For instance, a carer noted that things improved after questioning providers about the lack of care her Mom received after a fall which occurred while in hospital:
“And she was just lying in bed for 3 days, a little 86 year old. Like no, I wasn’t very happy […] I wasn’t angry, I wasn’t upset. Once I asked the questions, I got the best services. The nurses were awesome. Just nobody seemed to know what was happening next.” Carer 10
This same carer was alerted that a bed had opened up in a LTC facility prior to her Mom’s fall. The carer, who lived across the country, flew to the hospital where her Mom was located and went ahead and moved all of her belongings into LTC without permission so she would not lose her bed.
Other carers described their actions as more complacent and felt that their passivity put them at a disadvantage. When trying to understand how people were prioritized on the waiting list for LTC, a carer felt that it came down to “…how much noise you make. We’ve been pretty calm.” Carer 7
In summary, the carer role continued while the patient was ALC. Carer activities ranged from meeting personal care needs to advocating for the patient, even from afar, and filling the gaps of care not addressed by the formal care system. Carers who did not speak up felt that they were at a disadvantage.
Personalization of long-term Care
In the process of waiting for LTC (or following placement in a couple of cases) carers shared what was important to them about this next destination. Many patients were in wards (rooms with multiple beds as an ALC) and frequently changed units and floors to accommodate other patients.
A son caring for his father contrasted the private room in LTC to the hospital ward.
“He’s got his own room. Because at the [hospital], he was in a 4-bed room. So now he’s got his own private room, and he loves it.” Carer 13
One carer noted that getting her Mom to a LTC facility and personalizing her space was important to her and to the well-being of her Mom:
“Yes. I wish we can get her in there fast. It would be better for her. Then I can bring some of her stuff, like her TV and her chair that she likes to sit in […] At least it makes her look like she’s in her own place […] It might settle her down more.” Carer 12
A participant who was caring for his father commented that once his Dad was placed he started to re-engage in things that were previously important to him:
“Yes, there was church options…But he just chose not to go. But they never pushed there, eh…If he didn’t want to do it, he didn’t want to do it […] But at [Long-term Care Facility], it’s a little different set-up here than at the [Hospital]. I don’t know what it is. Just the fact that it is an actual real senior citizen home, that might have played on his head too. But he’s a little more into participation […] And now he’s going to church and doing his exercises and things.” Carer 13
Carers talked about the importance of the patient being in an environment that truly aligned with their needs and preferences. In one case, a carer described her brother with long-term memory impairment as an intellectual person who loved to learn and travel. Having stimulating conversations and books to read were important to him but the LTC home fell short of meeting these needs for her brother.
“[…] there are so many people that are in wheelchairs, they’re sleeping. It’s just not… [Brother] says it’s not nice to look at people like that. He said, “I can’t look at people that are like that all day.” […] Because he’s got a good long term memory, he could talk about any philosophy or history that you wanted him to.” Carer 15
Finally, proximity of the LTC home to the carer’s residence was a factor that was raised to increase the convenience of visits, particularly for those who were working, were raising children or had their own personal health issues. Keeping a spousal unit together was deemed vital by a carer who reflected on the importance of having her mother (who required LTC) close to her father, who also had care needs, close together:
“I was thinking about, well, maybe, you know, if mom goes into [LTC home], and then wouldn’t it be wonderful if dad was in whatever, [assisted living closeby] […] So that then he wouldn’t have to drive and he would have that built-in social circle ….” Carer 11
In summary, when carers reflected on their expectations for LTC, finding an environment that aligned with the needs and preferences of their loved one, having a private space and being in close proximity to family was important for ease of visiting, socializing and patient quality of life.