Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design
© Lang et al.; licensee BioMed Central. 2015
Received: 16 December 2014
Accepted: 18 December 2014
Published: 27 May 2015
Palliative care clients with complex needs are increasingly choosing to remain at home for their care. Home represents familiarity, presence of supportive family and friends, potential for normalcy and, a safe haven. The palliative care literature although robust is hardly ever linked with safety and home care. Patient safety has been focused predominantly on institutions without a corresponding level of research or safety initiatives in the home care sector. Although a growing body of research has begun to highlight the complexity and multidimensionality of home care safety there is a dearth of understanding of safety issues from the perspectives of clients, caregivers, and paid providers who are responsible for managing and coordinating palliative home care. The aim of this study was to describe the experiences, challenges, and insights regarding safety for adults receiving and providing palliative home care services.
Mixed method design was used to capture the multiple meanings and influences on the broadened conceptualization of home care safety including emotional, social, and functional safety. There were three types of participants in this multi-site study namely palliative home care clients, caregivers, and paid providers. Individual interviews (n = 33) were conducted in the client’s home followed by a photo “walkabout” to describe their daily experiences and routines. Focus groups, three with experienced professionals (n = 25) and two with home support workers (n = 11) were also conducted.
This study supports the broadened conceptualization of home care safety namely that: the safety of the client and caregiver are inextricably linked; the home is an unregulated and uncontrolled site for providing palliative home care in contrast to hospitals or other institutional settings; and clients and caregivers have the autonomy to live and take risks in their own home.
To ensure quality in palliative home care and to mitigate safety risks the client and caregiver(s) should be considered as the unit of care; caregivers need to be better prepared and trained to manage the complexity of issues; and regular assessments are imperative to monitor and detect changes in the unit of care and their changing needs while respecting their autonomy to make less than safe choices.
KeywordsPalliative home care Caregiver Home care Home care safety Patient safety Interpretive description Mixed methods Human factors
Palliative care clients with complex needs are increasingly choosing to remain at home for their care [1, 2]. Home represents familiarity, presence of supportive family and friends, potential for normalcy and, a safe haven [3–5]. Home care includes a wide range of services to individuals who need medical or nursing treatments such as wound care and medication management. It also includes assistance with activities of daily living like bathing, dressing, and eating, and/or help with instrumental activities like housework and meal preparation .
As is the case throughout Canada, most countries focus on patient safety in the institutionalized care sector. There has not been a corresponding level of research or patient safety initiatives in the home care sector . Moreover, although the literature on palliative care is quite robust, it is hardly ever linked with safety and home care. In 2006, following the first U.S. National Summit on Medical Errors and Patient Safety, the Research Quality Interagency Coordination Task Force produced the first document to link safety and palliative home care . Extending knowledge about safety in palliative home care is important because clientsa receiving end-of-life care, as well as their family and caregiversa, are particularly vulnerable to medical errors and safety lapses for a number of reasons. Palliative clients have increased exposure to medications, treatments and the healthcare system; these clients have more serious effects from errors because they have less reserve with which to overcome the effects and lastly; their disease may have caused cognitive impairments. Palliative clients are often exposed to pervasive patterns of care that run counter to well-substantiated, evidence-based practices – including insufficient or inappropriate treatment of pain, depression, dyspnea, and other symptoms that are common with this population, in this context . Family and other caregivers that provide the majority of the care at home are often elderly and contending with their own health problems [6, 9]. Caregivers often experience sleep deprivation because they provide around-the-clock care such as administering and managing medications, moving the client, managing medical equipment, and providing intimate personal care such as bathing, toileting, and skin care . This is in stark contrast to how clients are cared for in institutions where there are two or three shifts of paid professionals prepared to provide this kind of care.
Caregivers are often ill-prepared and overwhelmed by the many demands they face, placing them at risk for injury and other negative consequences such as adverse physical, psychological, social, and financial challenges [11, 12]. Coordinated care, optimal medication regimens, advanced care planning, and bereavement care can all make substantial differences in comfort, rate of exacerbations, and even lifespan . Yet, palliative care clients and their family/caregiver(s) often face a piecemeal array of uncoordinated care elements, making the receipt and provision of home care challenging and fraught with risks . Providing palliative care in the home requires that home be recognized as “a distinct place of care”  and not just an extension of an institution. Moreover, the care and safety of palliative clients at home cannot be attended to without including the family and caregiver(s) in the equation [7, 16–21].
Dimensions of home care safety risks 
Dimensions of home care safety risks
Encompasses the physical environment including technology (i.e., oxygen tanks, dialysis, IV’s etc.), supplies (i.e. medications, stoma maintenance, solutions etc.) the diversity of people involved to manage and administer, and relationships with/between them.
Refers to the psychological impact of receiving and providing care at home. It is often distressing or anxiety-provoking for clients and caregivers to cope with a myriad of issues (i.e. managing medications, changes in client health status, treatments, and technology). Fatigue, exhaustion, depression are prevalent and can have tremendous impact on everyone involved.
Addresses the idea of where the client lives in the community, who lives with the client, who visits the home, and the nature of the client’s social support network. Potential for decrease in social interactions, loneliness, and isolation from friends and family. Potential for various forms of abuse is an important consideration for those providing and receiving home care.
Encompasses how health conditions or provisions of care affect activities of daily living, employment, leisure activities. Potential for diminished capacity to function in your home and community doing what you would normally be able to or want to do (i.e., shopping, banking, gardening, working etc.)
Although a growing body of research [7, 9, 19–21, 23–27] has begun to highlight the complexity and multidimensionality of home care safety there is a dearth of understanding of safety issues from the perspectives of clients and caregivers themselves, as well as from the providers who are responsible for managing and coordinating palliative care at home. As such, the research question guiding this study was: What are the experiences, challenges, and insights of adult clients, their unpaid family/caregivers, and their paid providers, regarding safety in palliative home care?
Interpretive description methodology , which acknowledges the constructed and contextual nature of the health-illness experience, was used to design this study. This grounded approach to articulating patterns and themes emerging in relation to various clinical phenomena, was used to capture the multiple meanings and influences on the social, emotional, functional, and physical safety that play out within the palliative home care experience. This non-categorical qualitative research methodology was useful in contributing to our understanding of how people experience health and illness and focused on what healthcare providers can do to make a difference .
The broadened conceptualization of safety in home care that includes physical, emotional, social, and functional safety [7, 21] was the framework used to guide this study. Socio-ecological perspectives [29–31] provided an analytic lens to help us understand the increasing complexity and interrelatedness of the concepts of safety, palliative home care, and clinical practice, with the diverse personal and environmental factors and the interrelationships among these factors that influence a given health situation. Aligned with these perspectives is the contribution of human factors principles which considers “human capabilities and limitations in the context of interactive systems of people, tools, technology, and work environments to ensure their safety, effectiveness, and ease of use” . In the case of home care, human factors engineers understand the need to examine the complex issues at play and the potential threats to quality and safety through an analysis of the sensory, physical, and cognitive abilities of providers/caregivers/clients, required care processes and tools, medical devices and other equipment, and the physical environment in which care takes place. Instead of requiring people to change their behaviour to interact with complex systems, human factors focuses on changing the systems that people interact with to account for known human strengths and limitations so safety may be improved .
This study took place in two Canadian cities, Montreal and Québec City, from 2009–2012. While Montreal has a large multi-ethnic and multi-cultural population, Québec City is more reflective of the demographics of the rest of the province of Québec, which is predominantly Caucasian, Catholic, and French-speaking . Study participants reflected this portrait. Although both cities fell under the same provincial jurisdiction for healthcare, the reality was such that the criteria used to designate an individual to receive palliative home care and the services offered, varied across Centres locaux de services communautaires (CLSC), which are community services centres providing health and social services in peoples’ homes.
Based on the broadened conceptualization of home care safety [7, 21] data were collected using semi-structured interviews, photo “walkabouts”, and focus groups all of which were digitally recorded. Following ethics approval, the research team relied on nurses and case managers from participating CLSCs to recruit participants. Eligible clients receiving palliative home care services were identified and contacted in order to determine their interest in learning about this study. Clients, caregivers, and providers who were interested and who agreed to release their names were contacted by the researcher to explain the study, answer questions, and arrange to meet with those still willing to participate.
There were three types of participants in this study namely palliative care clients, caregivers, and paid providers. Five households in each city participated resulting in a total of 33 interviews (note: in two households an additional provider was interviewed and in one household an additional caregiver). Client and caregiver interviews were conducted in the client’s home in either English or French depending on their preference. In order to allow for more freedom in speaking about their respective concerns and insights, the interviews with clients and caregivers were conducted separately when possible. Following the interviews a photo “walkabout” was conducted, during which the client, caregiver, or both parties guided the interviewer through the home while describing their daily experiences and routines. Visual methods, such as photo narration are increasingly being used in social science and qualitative research as a way to encourage participant collaboration while accessing the experiences and voices of research participants [34, 35]. Features such as stairs, areas or rooms in the home, devices, medications, and supplies that were linked to daily routines and any possible safety concerns were pointed out by the participant and were captured on digital camera by the researchers for later human factors analysis.
Clients and caregivers self-identified as Quebecois or Canadian from a variety of cultural groups (e.g., Belgian, Haitian, East Indian, Bosnian, and Jewish). There was an equal distribution of female and male clients whose mean age was 78 years (range = 66–89 yrs.). All of the palliative designations were based on the client’s cancer diagnosis (i.e., lung, prostate, colorectal, nasopharyngeal, and pancreatic cancer). In addition to cancer, some of the clients were also living with various chronic illnesses including congestive heart failure, chronic obstructive pulmonary disease, diabetes, renal failure, and rheumatoid arthritis. Nearly half the caregivers were women with a mean age of 70 years (range = 52–87 yrs.), and all but one caregiver, who was the daughter of the client, were the spouses of the client. Clients and caregivers reported that their highest level of education achieved ranged from Grade 9 to a university degree.
Individual interviews with nurses (n = 5), social workers (n = 4), physiotherapist (n = 1), and occupational therapist (n = 1), who were most familiar with the participating clients and caregivers, were conducted at a time and place agreeable to the particular provider. To further enrich the data, focus groups  with paid providers were also conducted in each city. Three of the focus groups consisted of experienced professionals (n = 25) including physical and occupational therapists, nutritionists, spiritual leaders, physicians, while two were comprised of infirmière auxiliaire (n = 11) who are generally referred to outside of Québec as home support workers and paid to provide home care services such as house cleaning, cooking etc. Providers were predominantly women (98%) with a mean age of 53 years (range 26–59 yrs.) who had been working in home care on average 11 years and 6 years specifically in palliative home care.
Digital recordings of the interviews and “photo walkabouts” were transcribed verbatim and uploaded into NVivo 8, a qualitative software program. With the broadened conceptualization of home care safety as the guiding framework, two researchers independently coded each transcript identifying patterns and the relationships among the patterns. Two members of the team, including a human factors engineer, similarly coded the photographic data independently. We compared each interview with subsequent interviews. A pattern was identified either by its frequency in the data and/or by the importance of the issue that emerged.
The analysis team convened regularly to identify recurring, converging, and diverging patterns in the data. Any discordance was discussed until consensus was reached. In this paper, the findings that directly link to the experiences, challenges, and insights from clients, their caregivers, and providers around palliative home care safety are presented.
The four dimensions of safety namely physical, emotional, social, and functional safety [7, 22], described in Table 1, were used to frame the findings in this study. While the patterns have been listed separately, it is important to recognize there is some overlap, but not to the extent that patterns could be collapsed any further.
Pattern 1: Safety risk due to the mismatch of physical space, equipment and supplies
Pattern 2: Lack of preparation, training, and support for caregivers
I know they couldn’t tell me exactly what is going to happen, but they didn’t give me a clue. I had to guess at when to take her in to the hospital… that was to me the scariest, it’s the not knowing what was going to happen, what was coming, what were the first things I had to do, stuff like that… Everything was learn as you go but that was very difficult to me… [CG]
…When my husband was dying, I took him home but I was terrified, what did I know about caring for someone who was dying? I phoned my doctor, very intuitive, very bright man, so long as he could do something for you…When he couldn’t do something for you he checked out so I was really alone… [CG]
…we will teach them in the space of an hour how to give injections of morphine, but I remember the gentleman who told me: “You’ve had three years of training and then you ask us to do it in an hour…” [PRO]
…I found out recently that her husband had given her suppository and he dis-impacted her when she was impacted [constipated] and I’m thinking: ‘… does he have the training for that?’ [PRO]
If I have to always wash him by hand, it is not easy. I have already hurt my shoulder, I fell and all that, I do not know how long I will be able to wash him by hand? [CG]
Caregivers also had to manage unexpected and urgent situations that heightened the emotional, social, and functional distress for both clients and caregivers.
…there was one time when we went out together for some errands. He [CLI] suddenly says “I am going to have diarrhea now!” He couldn’t help himself…poor guy was full of it all over his pants… I had to tie my sweater around his waist and we asked the girl working in the clothing store if we could use her washroom. I made him sit and told him not to worry…I cleaned him up as best I could … [CG]Caregivers were frequently responsible for managing and administering multiple medications (including narcotics), often without any training. In contrast to hospitals, where professionals follow extensive and explicit policies and procedures about how to store, administer, and monitor medications, at home medications were managed irregularly. The human factors analysis of photographic data illustrated medications stored among non-medication related items, in cluttered locations, with other people’s medications, and among expired medications, creating safety risks for all involved (Figure 3).
Knowledge of the types of medications caregivers administered or clients self-administered was at times vague, limited in terms of what a medication was prescribed for, and possible effects or contraindications. Clients and caregivers were not always aware that failure to execute one step or adding an additional step in a medication regime could cause an overdose, considerably diminish a medication’s efficacy, worsen symptoms, increase the frequency of exacerbations, or cause other medication-related adverse events. Caregivers described the apprehension experienced pertaining to potentially forgetting to give medications and to giving too much of a narcotic such as morphine to manage pain.
Pattern 3: Caregivers’ health and wellbeing neglected by self and others
…I have an arrhythmia, I have high blood pressure…she won’t let me out. I have appointments, I have prostate cancer, and I can’t even go to my appointments since September because she says: You have to stay with me… [CG]
…I found it terribly difficult…he got up at night and did things…weird things but he couldn’t remember the following morning. It exhausted me terribly when I was not sleeping… he can do anything at night! I desperately need to sleep at night or I’m screwed because I have no reserves and I worry that if there was something I may be sleepy or not fully present… [CG]
she’s just so dedicated to her husband but she put her health way after his. She needed knee surgery, she needed to go to the doctor… it was to the point where one day she just fell… [PRO]
The social worker doesn’t even want to talk to me. As a matter of fact, she won’t even let me in the room when she speaks to [CLI]. It’s sick. That’s the other part, but I don’t care! I’m doing the best I can. Under very trying and very demanding circumstances at times… I don’t know what else to do… [CG]
[Referencing abusive relationship] You know we can’t fix problems that have been there for many years. It only escalates when there’s an illness, a life threatening illness. And you can’t fix it; you only can start from where you’re at. You can’t go back… if you gotta go back then that’s more therapy than I have the expertise for… [PRO]
Pattern 4: changing roles lead to tensions
a lot of times they [CG] accept to take them home because they know they’re only going to have them [CL] for a short period of time and they have accepted it mentally but sometimes they [CL] live longer and what happens is the caregiver gets burnt out …what happens is they’ll become more rough with the client, not intentionally but because of the frustration, they can grab them unsafely sometimes, or yell … [PRO]
her children got her to change her will so they are the beneficiaries, the executors. I wasn’t going to sit and fight with them, I’m gonna let them do what they gotta do, that’s basically what it is and they want to control her, the kids want to control her …[CG]
I became his mother, him my child in a certain sense. Well he is sick, there are things that I have to forget, but you know we are compassionate to his plight it would not change anything anyway. We both had a good cry, it would not change anything? No point to be in sorrow all the time… [CG]
I had a reaction, and my blood sugar dumped very suddenly. I was like shaking and just almost passed-out. That was scary. That was scary for him [CLI] … He was very afraid. But luckily he had some dried fruits in his drawer… I was still conscious. I was still aware what was happening and all that…I was like I’ve got to have something sweet. If I had actually passed out he could still get the phone of course, and call 911… [CG]
I must say again, my wife is looking after me despite the fact that she has a severe illness herself… [CLI]
It’s only in the last year, you see, because he [CLI] was the caregiver before. Yes, because she [CG]…physically, in many ways, she was the one who had more sickness. [PRO]
These renegotiated roles and responsibilities frequently added a palpable layer of stress to existing strained relationships among the caregiver and other family members, leading to misunderstandings, arguments, and increased tensions.
Pattern 5: autonomy to make less than safe choices
I could probably walk without the walker, but I am a little wobbly, and I know the therapist would like me to remove all my scatter rugs and I don’t want to do that, it would break my heart to have the house empty out like that, so I’m just aware of it and I try to be very careful not to hook into it and I want to leave the rugs… [CLI]
sometimes I see him go up or down this small staircase. But I learned not to bug him about it anymore. Even if it’s risky, even if it were better if he didn’t do it [climb steep staircase], it’s his choice… [CG]
We will propose solutions but it is up to them to decide what to do with the suggestions that we make, it is for them to make the choice. And that is what the people love to hear. They think “it is my home....” So even if they are not safe, we cannot demand anything… [PRO]
One example was an oxygen-dependent client who had a large sign on her front door warning visitors that oxygen was in use. However, anyone stepping into the apartment was immediately hit with a wall of cigarette smoke. When discussing the sign, the client explained that she made sure never to smoke in the room where the oxygen tank was located because she knew “how dangerous it can be” [CLI].
If we do not have a hoist and we know that with a hoist it would be more comfortable and safer to install the client in his bed, or in a chair that is there in the living room or in his room but she or he [CG] says …No, no I will take him, I will slide him… if spouses or caregivers are reluctant to use any kind of new devices and other things, it can be dangerous. [PRO]
sometimes I feel that if they don’t follow our recommendations or our ways of setting our safety limits, we step back. Of course, we have our own workers’ safety to protect, but how about the client’s safety? How about the neighborhood’s safety? The building’s safety? …. We can say, “Either it’s our way, or the highway.” Because we have rules and standards to abide by… it’s putting other people at risk… [PRO]
The personal and professional thresholds of safety risks for healthcare providers needed to be offset with the client’s and caregiver’s choice to live with certain risks. Although they strived to respect the wishes of terminally ill clients receiving home care, in some cases this created dilemmas for providers in terms of the safety risks posed. This perpetual balancing act is a key element of safety in the palliative home care scenario.
Pattern 6: revolving door of providers compromises trust and confidence
If it’s different nurses all the time, even if they are giving care, in my head, it’s not as safe as having the same nurses who are familiar with the situation… [CLI]
Last week another nurse came …and I was a mess because I don’t think she had ever put a Foley [catheter] into a woman before and she would say things like “does it go in the vagina, is the vagina open”, I said ‘what?’ I said ‘No! It goes into the urethra!’ Till she got it in, you imagine how stressed I was?
I was getting the lady for the respite… We’re also getting a cleaning person coming in from the CLSC… the first one was an excellent cleaner, but boy did she talk a lot. She would know all our business. And then I had another one who smoked like crazy, she can’t smoke in here because of the oxygen, but on her clothes you smelt nothing but cigarettes… [CLI]
In response to feeling stressed, frustrated, and less safe due to the number of different providers, some clients and caregivers re-negotiated the terms of the home care service relationship or the terms of the client’s care, (e.g., they requested specific services, insisted on consistency of providers, and identified unmet needs of the client that had been missed because of inadequate assessment). However this was after the acceptance of the services in the first place and not before, or as the home care contract was being planned. Clients and caregivers had to experience and recognize the disruption and perceive a threat to their safety and sense a loss of control in their home in order to try and regain some sense of control over the situation. In some cases this made clients and caregivers so uncomfortable they turned down some or all of the services they could have received.
passing in the same week, there can be seven different people even from agencies who don’t really know the client. I think our clients need stability and people they know… [PRO]
“…I hope they didn’t send him home on the weekend and he’s dead. You know, that was my biggest, worst fear; he had no family …It just happens sometimes. They don’t inform us, they just send them home… [PRO]
Although much has been written about the experiences and challenges of palliative care including palliative care at home, this study contributes new knowledge by using a safety lens to describe and explain the experiences of clients receiving palliative home care services as well as their caregivers and paid providers. Our findings support the broadened conceptualization of home care safety namely: how the safety of the client and caregiver are inextricably linked; the multiple dimensions of home care safety, including physical, emotional, social, and functional safety; that the home is an unregulated and uncontrolled site for providing care in contrast to hospitals or other institutional settings; and that clients and caregivers have the autonomy to live and take risks in their own home [7, 22]. Based on these realities, which were central in framing the findings from this study, we are structuring this discussion by putting forward five key messages to help mitigate the home care safety risks to clients and caregivers.
Key message # 1: consider the client and caregiver(s) as the unit of care
The safety of the client is inextricably linked to the safety of the caregiver [7, 22]. Caregivers in this study often neglected their own health needs, felt compelled to renegotiate their roles and relationships with the person they were caring for, stated that they experienced stress from the responsibility of caring and the apprehension of potentially committing a serious or fatal error, all the while trying to honour the client’s wish to maintain some level of autonomy and to die at home with dignity. Consistent with earlier work  caregivers in this study were seldom considered part of the healthcare team, seldom consulted regarding the plan of care, or acknowledged in terms of their increasing stress and deteriorating health. It is therefore imperative that beginning with the assessment stage of palliative home care services providers focus on the client and caregiver together as the unit of care, and not just the client as per the philosophy of palliative care . A means of accomplishing this would be to include a specific caregiver assessment at the onset of home care service provision to consider how ready and willing a caregiver is to take on the role of caregiver and to gain a better understanding of that particular family system. Moreover, having anticipatory guidance for caregiver about what to expect and where they can access supports would be useful to those taking on this responsibility.
Key message #2: prepare and train caregivers to manage the complexity of issues
For many, becoming a caregiver is a first time experience. When discharged from hospital it is taken for granted that those closest to the client will provide the care required, with little recognition or reimbursement. Referrals often provide incomplete information for home care providers putting the caregiver and client in a less than desirable situation from the outset [39, 40]. Often conscripted into the role, caregivers are increasingly relied upon by the health system to provide the lion’s share of the care, with little or no attention paid to the caregivers’ health condition, concerns or preoccupations . In this study, some caregivers did not grasp the exponential nature of care needs that would ultimately result from the client’s deteriorating health situations. Caregivers and clients also reported that paid providers typically underestimated the nature and extent of care and support required. Caregivers were vulnerable and often over-extended by the time palliative home care services were offered or engaged, or became so as the burden of care increased and the caregiving period lengthened. Caregivers have previously reported inadequate knowledge  particularly related to pain management, navigating an uncoordinated home care system, no hands-on learning, and not knowing what to expect as an illness progresses . This lack of knowledge may well be a contributing factor to the feelings of powerlessness and helplessness that caregivers described when providing palliative care  or the feeling of loss of control [44, 45].
Peoples’ homes are generally not designed for and thus seldom suited to the provision of healthcare. They can become cluttered and poorly maintained environments [6, 9]. Several challenges such as the mismatch between the available physical space and storage requirements of equipment and supplies in private homes, ; a lack of training or preparation to meet the complex demands, tailored information about available resources for clients and caregivers ; and the need to teach clients and caregivers practical skills and information [46, 48–52], have all been previously reported but without the link to safety. It is important to provide tailored and accessible information about the services available; training related to lifting and handling; medication management and administration; and dealing with symptoms and other forms of caregiver distress. A recent study found that caregivers learn through processes such as trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences . As in this study, caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or explained by others, instead of learning reactively after a crisis. Thus, preparing and guiding caregivers to manage the complexity of practical, emotional, and cognitive challenges associated with caring for the person who is dying, is pivotal to ensuring their physical, emotional, social, and functional safety as well as that of the person for whom they are caring [46–50]. This level of support for caregivers is essential to help them cope, enable them to recognize when they need additional support, and how to seek it, especially when care providers are not present.
Key message # 3: conduct regular assessments to monitor and detect changes in the unit of care and their changing needs
Safety at the end of life involves the inter-relatedness of the client, family members, caregivers, and healthcare providers. Trust and confidence in healthcare providers have been shown to be critical to a feeling of safety at home [46–49, 54, 55]. Providing nurses and support workers as part of palliative home care services is accepted as being helpful, yet it also has the potential to compromise trust, confidence and the emotional safety of clients and caregivers if this help is seen as a revolving door of different home care providers. This revolving door setup was typically due to the organisational challenges of scheduling, staff turnover, and burnout. It has the potential to compromise the safety of palliative care clients because of poor communication amongst home care staff and a failure to pick-up on small and subtle changes in the client and caregiver’s situation over time . Routine assessments of the caregiver’s health and well-being, along with the client’s should be part of home care. Conducting ongoing reassessments of clients and caregivers should include updating and adapting care and supports to their changing health needs.
Key message # 4: recognize, acknowledge, and respect clients’ and caregivers’ autonomy to make less than safe choices
Additional examples of the various dimensions of safety risks
Dimensions of safety risks
• Bringing the hospital to home -Diminished space and overcrowding in communal living areas because of equipment and supplies from hospital can result in risk of trips, slips, falls, from equipment like wheelchairs/walkers, lifting equipment, and tubing, which can cause unintentional physical injuries)
• Limited training in medication storage, administration, side effects, and contraindications of narcotic medications and paraphernalia in the home, which is used in end of life care
• Concern for caregiver well-being when taking on caring responsibilities, as well as implications associated with burden placed on caregivers
• Fear of hurting the client when using equipment they do not feel adequately trained to use
• Disease trajectories with unpredictable setbacks and often with sudden changes and/or exacerbations of disease
• Dealing with a multitude of intense life-altering situations that can change quickly, which are often urgent, unexpected and unpredictable
• Wish for a dignified death at home can result in either a conscious or unconscious failure to recognize safety risks for themselves or others in their home
• Fatigue as a result of being on duty 24/7, constant change, & uncertainty, and a lack of routine
• Grief and emotional distress because of caring for a dying loved one
• Client’s terminal illness and minimal social network lead to a feeling of conscription and the expectation that spouses, ex-spouses, siblings, and children will help, leads to a renegotiation of roles
• Pre-existing health challenges (physical & mental) are worsened when roles are renegotiated, leading to reciprocal roles being determined by who is the sickest at the time
• Pre-existing tensions amongst client, family/friends, and old wounds re-opened
• Client loss of dignity (due to incontinence) in public places
• Compelled to take time away from work or other activities
• Diminished capacity for self-care, employment, engagement with family, friends, outside world
• Learning to be a caregiver on the job with limited support
• Developing ‘home grown’ solutions placing both parties at risk
• Inability to recognize if something is wrong because never told what to look for
The providers in our study spoke of the need to respect the way of life of the clients and caregivers and the entirety of their needs and concerns rather than focusing solely on physical safety. This is one of the hallmarks of home care and home care safety, allowing the clients and caregivers to make less than safe choices when safety is considered from a physical point of view. Caregiver safety is enabled by providers having an attitude that does not judge or diminish the caregiver, affirms their concerns and efforts, and that enables the client, family, and caregivers to live their lives as they wish, to the extent possible . This suggests that while the family’s choice to prioritise other concerns over those of physical safety the broader concept of safety is actually increased.
Key message # 5: ensure continuity of and coordination of quality care for the unit of care in each household
Home care is an assortment of services offered by an ever-changing roster of providers. For the palliative care population transitions between hospital and home is relatively common for acute episodes or symptom management. These recurrent transitions present challenges to sharing documentation and communication, challenges for which the risks are heightened at points of transfer across sectors [57–59]. Assigning a cross –sector case manager who has comprehensive understanding of a particular household with the authority and responsibility to minimize disruptions should be considered as a step towards ensuring continuity, mitigating risks, and coordinating care.
Patient safety as conceptualized in institutional settings does not fit well with home care safety [7, 22]. The safety issues presented here within the context of palliative home care draws attention not only to safety issues of the client but also illustrates the interconnectedness between the client’s safety with that of their caregivers. This study highlights how to expand the safety framework for home care to include the emotional, social, and functional dimensions of safety along with physical safety. Future research needs to maintain a systems perspective including focusing on the client and caregiver(s) as the “unit of care”, not just the client. Moreover, policy and practice changes are needed to ensure that assessments and care-plans are tailored and adjusted on an ongoing basis as the situation and needs for the unit of care evolve. Finally, in order to mitigate risks and ensure quality, current and potential recipients of home care need to be empowered to request and expect home care services tailored to their particular unit of care.
a In our work, home care patients are referred to as “clients”, and the term “caregivers” signifies unpaid family, friends, or neighbours who support and provide care for the client. “Providers” are professional – regulated or unregulated – individuals who are paid to provide home care services to clients.
Centres locaux de services communautaires (Local community services centre)
Victorian Order of Nurses Canada.
This study was supported in part by the Canadian Institutes for Health Research, le Ministère de la Santé et des Services sociaux, Accreditation Canada, Canadian Institute for Health Information, University Health Network, and the Canadian Patient Safety Institute. As a Chercheure Boursière, Dr. Ariella Lang was supported by Fonds de Recherche Santé Québec. Réseau de recherche en interventions en sciences infirmières du Québec (RRISIQ) and McGill University provided financial support to Dr. Lang for this publication. The authors would like to thank all of the individuals who recruited and made the initial contact with the families as well as those who participated in the interviews and focus groups. A special thanks is also extended to the individuals and caregivers who participated by generously opening their homes and lives in order to make this project a reality. We would also like to thank Jo-Anne MacDonald and Michelle Proulx for their input into the analysis of the data and Janet Purvis from VON Canada and for her invaluable comments and edits to the final manuscript.
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