Context
Participants spoke of the complexity of the MCC experience: multiple conditions that included not only physical, but also psychological conditions such as depression and anxiety; impacts of MCC on physical, psychological and social domains of health; managing many different medications for multiple conditions; seeing multiple health and social care providers; and health-related crises that lead to transitions to and from the acute care sector. Within this context, participants described how they had to accept the realities of gradual health decline associated with MCC and set realistic goals. Older adults explained, “I’ve adapted to it as it’s happened…it’s been a gradual thing. You know, you get this problem and then you get this problem and then you have another problem and …I’ve just dealt with it” (Older Person ON 111).
Caregivers described dealing with increasing needs and demands associated with MCC: “If I was to say anything about being a caregiver, I’d say it’s tough, and as she gets worse, it gets tougher” (Caregiver AB 216). Caregiver goals were focused on keeping the care recipient as well as possible, and in their homes: “keep him stable, where he is now” (Caregiver AB 206). Healthcare providers focused on maintaining “quality of life” and setting “realistic goals” for persons with MCC, as one participant described: “So it’s really trying to find out what do they actually want that would improve their quality of life in view of their chronic conditions” (Palliative Social Worker ON 03). It is within this duality, on one hand feeling hope to maintain function and continue to live at home, but on the other, accepting the reality of worsening illness and its implications, that the experience of MCC was described.
The experience of managing multiple chronic conditions
Overwhelming, draining and complicated
All three groups described the experience of managing MCC as overwhelming, draining and complicated. Older persons described their experience as “difficult,” “lousy” and “hard.” Many outlined feeling “frustrated” that they have “no strength,” “no energy” and “limited mobility,” forcing them “to give up a great deal” of both the everyday activities such as walking across a room, as well as special activities, such as sports and hobbies. Several older people described feeling “overwhelmed” by their MCC, that it was “hard to cope,” they were “tired of the pain,” that they had “no control over” their health and there was “nothing I can do to stop it.” Conversely, a few older persons described their experience as “good, usually,” that limitations “come and go,” but that generally they were “managing well” and described themselves as “lucky”.
Caregivers described their experience of caring for an older person with MCC as “overwhelming,” “frustrating,” “draining,” “exhausting,” “stressful,” “challenging,” “time-consuming” and “emotional.” They described having to “do it all” and felt “stretched,” wanting, needing and sometimes not being able to “be there all the time.” A few caregivers who were providing care to a family member whose MCC were relatively stable reported “managing well” and saw themselves as “fortunate”.
Providers described caring for older persons with MCC and their caregivers as rewarding, yet also challenging. Some providers described the challenge of trying to address the multiplicity and complexity of physical and psychological issues: “It can be very draining if they have a lot of conditions. If you care … it’s difficult not to think that you can help with everything and be all things to all” (Physiotherapist ON 08). Providers expressed a sense of isolation and potential for burnout in caring for clients with MCC: “I have to handle all these clients by myself and sometimes there’s struggle and burnout because you can feel frustrated” (Primary Care Social Worker AB 302).
Organizing pills and appointments
All three participant groups discussed their experiences in organizing care when dealing with MCC. Older person and caregiver efforts centred primarily upon managing multiple medications and appointments. Examples included: obtaining medications though doctor’s appointments for prescription renewals and ordering refills from the pharmacy; organizing medications at home using dosette boxes; monitoring and managing side-effects; and managing changes to medications that frequently occurred after an acute care hospitalization. Caregivers described “constantly looking at medication” (Caregiver ON 224).
Older persons and caregivers described that much of their communication with providers, particularly family physicians and specialists, focused on medications. One participant described his appointments with his family doctor: “I just tell her why I’m there and [the situation] …and then she just gives me another pill” (Older Person ON 115). Medication discussions focused on changing medication dosages, adding new medications, and discontinuing others.
Several participants described major changes to medication after older persons with MCC were discharged from acute care hospitals. These changes were described as being abrupt; carried out by providers without input from older persons or caregivers regarding their preferences; and in some instances, were harmful
. New medications brought challenges of new side-effects that required additional monitoring and action. Providers from all disciplines and work settings discussed the complexity of medication management for older persons with MCC. This complexity involved not only large numbers of medications, but also interactions between them: “
It’s also very overwhelming to them [older persons with MCC]. They’re on 15 different medications because everybody has been giving them all, but taken all together, it’s just too much” (Family Physician, ON 16). Several providers discussed the challenges of evidenced-based care for this group, since many guidelines are based on evidence from younger clients and those with single rather than multiple conditions:
“The complexity of it makes it a little difficult… My biggest challenge is trying to follow guidelines because when we have patients who have multiple conditions and it’s impossible to follow ten different clinical guidelines, otherwise you have them on 50 different medications, so it’s always that risk-benefit assessment … most of the clinical guidelines aren’t made looking at studies in the geriatric population” (Pharmacist ON 05).
Caregivers in particular spoke about organizing appointments and accompanying the older person: “I go with him to all the specialist appointments. I always go” (Caregiver AB 206). Caregivers also described “coordinating,” “making arrangements,” “scheduling” and “managing” healthcare appointments, along with managing tasks surrounding visits, such as completing blood work, going for scans and tests, arranging transportation, and when needed, negotiating time off work.
Being split into pieces
Older persons with MCC and caregivers described challenges receiving services from multiple providers who focus on a single disease or single aspect of their health, and do not see them as a whole person. Care is often experienced as disjointed and lacking coordination. Similarly, providers described difficulties “knowing the whole picture” since each provider only has a “piece.” Some older persons explained that they don’t see themselves with a number of conditions, that it is all “one.” A participant described: “[The MCC are] all interrelated anyway…they’re all me…it begins to sound like the rheumatoid arthritis ‘me’ and the diabetic ‘me’ but they’re all me” (Older Person ON 113). This description spoke to an approach to care that was often centred on a single disease or condition, rather than holistic or person-centred in nature.
There was variation in the experiences of caregivers and older persons related to how care is coordinated among multiple providers. Many participants described that information from specialists was sent to their family doctor: “I mean there’s communication, one way back to the family doctor” (Caregiver AB 206). Others reported that the coordination process was mysterious, they didn’t know how it was done, but reported that it must be happening: “I have no idea if things go to him [family doctor] or not. Now, when I see him, I do share what happened when I saw a specialist, but I really don’t know” (Older Person ON 101). Some participants described the healthcare experience as piecemeal: “I don’t see as much of a team approach. It’s very piecemeal” (Caregiver ON 201).
Many providers discussed challenges in care coordination across the multiple specialists and providers and with family and patients. They described challenges in obtaining health information they needed to provide care in a timely way. This was particularly so for front-line home care providers: “I have delayed or no, medical information… so, it can take several days for a phone call of information to come through to me” (Physiotherapist ON 07). They explained they often rely on family members to act as communicators with the team: “The patient or the patient’s family… often have a copy of the findings and they’ll show us. That is the only way” (Registered Nurse Home Care ON 20).
Providers who worked in primary care teams described the ease of accessing information from other team members through the shared Electronic Medical Record (EMR): “Every single discipline, they have access to other files from the different disciplines, which is helpful” (Primary Care Social Worker AB 302). They also expressed a need for this information to be available to providers outside of their team (e.g., home care providers) in order for providers to have a holistic focus: “The shared patient record is key for different agencies, it is invaluable in A) not duplicating and B) being aware of the full picture before you treat something in isolation” (Registered Dietitian ON 06).
Not only was there a ‘split’ or division between care for different chronic disease conditions, there was also a separation between care for diseases and health promotion/disease prevention efforts. Older persons and caregivers rarely mentioned healthy eating, physical activity or other health promotion activities as the focus of physician interactions. However, many older adults and caregivers reported that they were engaging in health promoting activities such as “watch what I eat,” “eat proper foods” and “walk” to “lose weight,” as well as doing “puzzles and games” to keep the mind “busy” with cognitive exercise. Non-physician healthcare providers often mentioned health promotion activities as a key part of their care and described how they helped clients see the connections between health promotion activities and improved function.
Doing what the doctor says
There was a marked disparity between the experiences of older persons and caregivers compared with providers in relation to making decisions about managing MCC. Older persons and caregivers perceived that decision-making regarding their care was physician- or provider-directed. In contrast, providers perceived that they were using a shared decision-making and collaborative approach. One of the first steps of engaging older adults and caregivers in decision making involves actively listening to their concerns and experiences. A number of participants described instances of their voices and wishes not being heard by family physicians and specialists: “We don’t get a chance to say anything to him because he’s ready to get out; he’s got so many clients, these specialists see as many patients as they can and you’re out of there. That’s disappointing” (Caregiver ON 219).
When asked to describe the decision making process related to managing MCC, many older adults and caregivers reported “
obeying” doctors, and that “
we do what the doctor tells us to do.” They described barriers to being engaged in these decisions: “
Most doctors don’t get it…they hear what they want or what they think you’re supposed to say and they tell you what they want” (Older Person AB 107). When asked if family doctors discussed goals of care, care planning for the future, or provided health information or connections to services, many participants reported they did not. In a few situations, participants described relationships with physicians where their concerns were heard and acted on:
“The doctors will talk with me and listen to what I’m telling them and then we’ll try to work together on what we could do to keep him as comfortable as possible. I feel that I have a pretty good voice” (Caregiver ON 222).
In stark contrast, providers from all disciplines and settings exhaustively described their interactions with older adults with MCC and family members as focusing on their priorities, collaborative, respecting choice, and fully engaging them in decision making related to care. They used phrases such as: “My goals are to meet their goals,” “trying to let them steer their own boat,” “giving them choices” and “all my treatment decisions are made in collaboration with the patient.” Providers described starting with patient and caregiver goals: “My job is to recommend decisions to people or recommend treatment options. So, I make sure they understand their options as best as possible and I would start with ‘what’s your goals of care?’” (Family Physician ON 11). Similarly, in home care, the focus was on clients and choice: “It’s a collaborative effort, client being number one, what do they want? And then providing them with what options we have to offer” (Registered Nurse Home Care AB 20).
Relying on family and friends
Participants in all three groups described the key role that family and friends play in providing informal support to persons with MCC. Older adults and providers described relying on these supports, while caregivers described the significant and often stressful roles they took on to help the older person with MCC to continue to live in their own home. Informal caregivers provided a very broad range of supports that addressed the complexity of MCC including physical care, provision of meals, housework, managing medications and their side effects, assisting with exercise, providing transportation, and accompanying older persons to medical and other appointments. Caregivers also provided emotional support, cognitive stimulation, social outings, and personalized care.
Informal support was most often provided by spouses and children: “with the support of my husband and two daughters, we manage quite well” (Older Person AB 104), and friends: “I’ve got good support – friends…you gotta have that support system” (Older Person AB 112). Participants also talked about other sources of support such as faith communities and online sources of support: “I get a lot of support from friends and people I know on Facebook” (Older Person ON 107).
Many participants from all three groups described the informal caregiver role of supporting individuals with MCC as one of excessive strain and burden. An older adult explained: “She does everything. She’s got a tremendous load, a very tremendous load” (Older Person AB 110). Caregivers described a sense of having to do everything without help: “I think having to do everything, pretty well....some days it’s too much. I can’t handle all this and I don’t have any outside help” (Caregiver ON 221). Caregivers recognized the seemingly unending nature of caregiving for persons with MCC as overwhelming: “I feel like I’m floundering because I feel overwhelmed. I feel like there’s no end in sight” (Caregiver AB 212).
Providers described the primacy of the role of informal caregivers in supporting care of older persons with MCC. They explained that having family members improves patient care and outcomes: “if they have a family member nearby who’s willing and wanting to help, it makes a huge difference in terms of prognosis and the outcomes and that patient’s care” (Pharmacist ON 05). Physicians expressed how the active involvement of caregivers facilitates more coordinated care: “You always hope they have someone that’s there to help them out. Because there’s adults that don’t necessarily have someone that can just come to appointments or take them places or be involved in their healthcare and then it’s just a mess” (Family Physician, ON 13). One provider beautifully illustrated this theme: “I think their ability to come to those appointments, to attend education sessions, to be kind of a participant in that journey is key” (Registered Dietitian ON 06).
Having difficulty getting outside help
All three groups of participants spoke of the difficulty in getting outside help to assist the older person and caregiver to manage the complexity of MCC in the home. Outside help included a wide range of health services such as home care, as well as support services such as caregiver support groups. Participants described five aspects of getting outside help: (a) the lack of awareness of available community health and social support services; (b) the difficulty in accessing services; (c) the inadequacy of services in meeting needs; (d) the delay in accessing or refusal of services, and (e) needing a ride.
The lack of awareness of available community health and social support services
Many caregivers and older persons reported being unaware of available community health and social support services: “I don’t know of anything else. My granddaughter, she was saying that there’s a lot of stuff out there that we could have. I don’t know” (Caregiver ON 217). Some reported hearing about services through providers or word of mouth. Many providers, in contrast, described awareness of support services, regularly discussing those services with clients, referring clients to “a whole list of resources” (Physiotherapist ON 07) and sharing contact information.
The difficulty in accessing services
Participants described the complexity of both accessing information about services as well as accessing the services themselves as this caregiver explained: “What I have found is accessing information or services or knowing what resources are available is very complex. It is convoluted almost and there are so many people involved that you don’t know where to start” (Caregiver AB 221). Some older adults and caregivers who had tried to access support described frustrations connecting with organizations, waitlists and being ineligible for services: “I signed up for an exercise class and it took me a year before I got in” (Older Person AB 101). A caregiver described her attempts to organize services for her husband but because his condition was not considered severe enough, they “floundered” and had to wait for years before he became eligible.
The inadequacy of services in meeting needs
All three participant groups spoke of the inadequacy of community health and support services in meeting needs. Most frequently, they spoke of the inadequate number of hours of homecare services to meet the complex and intense needs of older persons with MCC: “For my father, he’s maxed out in terms of the number of hours; he’s got 90 hours a month but that’s only 3 hours a day and when he needs 24 hour coverage, that’s really hard” (Caregiver ON 205); They’re getting 2 hours a week and it’s really not enough” (Family Physician ON 16); and “There just isn’t enough community supports, there isn’t enough respite” (Outreach Social Worker AB 01).
There was also variation in the perceived usefulness of home care with some participants reporting it as “great”, others as inconsistent, inconvenient, and some as no help at all. Participants spoke of the challenge of lack of consistency of home care staff: “It’s a different person each time. That, to me just does not sit. If I have to show them what, or she has to tell them each time what to do, you might as well do it then” (Caregiver AB 204). One respondent described that when her family member was deemed palliative she was able to receive much more support, with better coordination than when he was deemed chronically ill.
The delay in accessing or refusal of service
Many respondents indicated that they used no formal services at all, or that they used services in the past, but none currently: “No, other than going to the doctors” (Caregiver ON 208); “No, no there’s nobody, really … No, I have nobody come” (Older Person ON 106). Caregivers and older adults often described delaying or refusing services for a variety of reasons such as valuing their independence and personal preferences of the older person. Many caregivers stated that they were “managing,” so did not want the disruption that would come with acceptance of services: “I’ve been offered respite, I’ve been offered help with light housekeeping and at the moment I can manage that so I really don’t want someone coming in among all this while I can still take care of it” (Caregiver ON 222). Some caregivers spoke of the reluctance of the older person to participate in programs: “Well, there’s things that we have access to that he doesn’t want to participate in, like programs outside the house. He was a part of that and he didn’t want to go anymore” (Caregiver AB 214).
Providers explained that they struggled with situations where families with MCC clearly needed support services, yet refused these services. Reasons for refusal of services included pride, independence, a reluctance to have strangers in the home, and a fear that opening the door to services was indicative of an impending move to long term care. Providers struggled with how best to support families to accept services:
“So getting them to open up to a wider scope of support … [the family says] ‘It’s alright, we’re handling this. ‘Well, they’re not because it’s getting worse and worse. Let us help you find the support; let us work together but, ‘Oh, no, we’ll do it. We’ll manage fine; you’re busy. You’ve got other people that you need to worry about other than us.’ And that seems to be the biggest struggle” (Registered Practical Nurse Home Care ON 22)
Needing a ride
All three participant groups discussed the importance of being able to drive or have transportation to attend the many medical appointments associated with MCC and to participate in programs or services. An older person explained that “part of my problem is that anywhere or anything I want to do, I have to get [my husband] to take me because I can’t drive now” and that even though there was a program in her church she wanted to attend, “I hate to burden him with that when he’s already got enough on his plate” (Older Person ON 118). A provider explained: “Others are relying on a son or a daughter to take them to their medical appointments and then others might be relying on public transport. In some cases that’s a barrier to them actually participating in a service they could potentially benefit from” (Exercise Specialist Primary Care AB 07).
Participants identified the costs associated with public or private transportation for frequent appointments related to MCC as an important barrier to accessing needed care: “Transportation is a big issue and finances because people just can’t afford it” (Physiotherapist ON 08); and “[patients say] ‘I can’t afford a taxi. My husband is not well, can’t drive me. My kids are busy. I don’t know how I’m going to get here.‘So really, getting people to their medical appointments can be challenging” (Physiotherapist AB 18). Providers also recognized the barriers posed by living in rural areas: “In the rural areas, transportation is an issue. It’s very costly for patients to get to appointments” (Nurse Practitioner ON 09).