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Patients who choose care in a home setting at the end of life may be at risk because of their declining cognitive or physical abilities, environmental hazards in the home, or caregiving issues. Although safety concerns in hospitals have been well documented, knowledge about safety issues in the home setting is limited. This qualitative, focused-ethnographic study was conducted to understand the safety issues that occur in the home setting from the perspective of home care clinicians who manage these issues for end-of-life patients.
As the terminally ill increasingly choose to be cared for and to die in the home setting (Higginson et al., 2013; Tang & Chen, 2012), home care clinicians must manage a variety of safety issues that may be precipitated by the patient's disease progression, caregiving, or environmental hazards in the home. Informal caregivers such as family members who provide care in the home are often exhausted and unable to foresee every risk to the patient and their understanding of safety may differ from that of clinicians (Lang et al., 2009).
Safety issues in a hospital setting have been well documented since the 1990s (Cafazzo & St-Cyr, 2012; Waring, 2009). Research regarding safety in the general home care population is, however, fairly recent (Doran et al., 2009a, 2009b). Such studies indicate that further research is necessary to understand patient safety as it pertains to those receiving end-of-life care (Lang et al., 2009; Macdonald et al., 2011).
The World Health Organization (WHO) specifies that patients are entitled to be safe and free from harm when receiving healthcare (WHO, 2009). The increasingly elderly population of western countries such as Canada and the United States is, however, predicted to strain healthcare services in the coming decade. As end-of-life care more often occurs in a home setting, research pertaining to the safety of these vulnerable patients is urgently needed (Tang & Chen, 2012).
A qualitative, focused-ethnographic study was conducted to understand the hidden and overt aspects of safety issues in the home setting for urban, adult, end-of-life patients from the perspective of home care clinicians. Permission to conduct the study was received from the Research Ethics Board of the principal author's university.
Thirty-two English-speaking clinicians who provide end-of-life care in the home setting were recruited at the team meetings of a variety of home healthcare organizations in Ontario, Canada. In keeping with the requirements of qualitative research, this sample size of participants was expected to saturate the data categories and subsequent to analysis provide a robust description of the area of study (Krueger & Casey, 2008; Small, 2009).
Community palliative care coordinators, personal support workers, physicians, and nurses were interviewed in one of four profession-specific focus groups. A fifth combined professional group was conducted with occupational therapists, physiotherapists, and social workers. Each focus group was comprised of five to eight participants with a range of 2 to 27 years of end-of-life home care experience.
Data collection in focus group format occurred simultaneously with data analysis, which in ethnography is a combined process that searches for patterns that will form the phenomenon being studied (Hammersley & Atkinson, 2007). The participants were interviewed for 1 to 2 hours using a semistructured, open-ended questioning format that invited them to describe the safety issues they had experienced while caring for end-of-life patients in a home setting (Prus, 2005). An interview guide was developed with the assistance of an advisory committee composed of representatives of the various professional groups being interviewed. A primary facilitator asked questions from the guide and a secondary facilitator observed the focus groups and wrote field notes.
The interviews were audio-recorded and began with the overarching question: "What safety issues have you seen while caring for end-of-life patients in their homes?" Probes were employed to elicit experiences and views about safety issues specific to the patient, the patient's family, informal caregivers, and home care clinicians. Subsequent questions were: "Which safety concern is in your opinion the most important?," "How do these safety concerns relate to the patient's wishes?," "What do you do now (or are able to do within organizational limits) about these safety issues?," and "What would you like to do, or prefer to do, about these safety issues?" The final question pertained to the participants' wish list: "Given unlimited resources, what could be done to prevent these safety issues from happening?"
The focus group data were transcribed verbatim from the audio-recordings and coded. The codes were grouped into categories and the data segments were then compared both within and across participant groupings for categories that were common to all participant groups (Mayan, 2001). The study's advisory committee validated the categories that form the results of the study (Charmaz, 2003; Morse et al., 2002).
There was consensus among the participants that the patient's wishes dictate how he or she will live and be cared for in the home setting at the end of life, and that patients and their informal caregivers do not realize how quickly an end-of-life patient's condition can deteriorate; an aspect that differentiates their care from that of other home care patients. The resulting safety issues are unique to each patient and are accorded priority based on the individual patient's needs. These safety concerns are illustrated in this study by four categories that were generated from the data analysis. The first three communication, competency, and capacity pertain to the patient, informal caregiver, or home care clinician. The actions of these individuals can either increase or mitigate safety issues in the home setting for end-of-life patients. The fourth category, barriers, is broader in scope and identifies issues related to organizational policies, a home's physical environment, or resource management that may impact upon a clinician's ability to safely care for patients.
The speed and accuracy with which communication occurs impacts the quality of patient care and hence patient safety. The transition points in a patient's illness trajectory are when speed is most important; particularly when a patient is discharged from the hospital before the weekend when medication may not be available and the appropriate assistive devices are not yet in place. This then becomes a time when a team of healthcare professionals has to scramble to put the necessary patient supports in place, engendering a whirlwind of activity to make all possible connections so that the patient and his or her family can be supported safely in their home. Clinicians agreed that communication is quicker when Internet access is readily available or when smart phones are used. One participant stated, "Our cell phones are just not great but if we had smart phones to send quick emails, our communication would be faster!" Another participant indicated that "we are encouraged to take our laptops into the home but if the wireless doesn't work, you can't order things right away and I will be typing and then the signal goes down, so I have to close everything down, and start all over again. It would just be so much more efficient and we could get a lot more work done if we could just do things immediately with a smart phone."
Accurate communication is also important, as it is vital to the patient's understanding of his or her prognosis. Failure to understand the prognosis may perpetuate a patient's or family member's quest for ongoing treatment that may not be in the patient's best interest "for example if the husband is pushing for more chemotherapy or radiation when his wife can barely get out of bed ... it is not safe for her then to have more treatment!" Accurate communication may be an issue as well when family members serve as translators for the patient. As a participant stated, "If I have to rely on family members, I worry about censorship. They're selective in what they'll tell you and they might not be giving you what the client is actually saying."
"There is often a disconnect[ion] between what the patient can do and what the patient thinks he or she can do." This statement also applies to the informal caregiver who is unable to accept the physical or mental deterioration of the patient that may have occurred due to conditions such as brain metastases or chemotherapy. "You say this is not safe but they say oh no he can do it, he's going to get better." These unrealistic beliefs about the dying person's competency place the individual in harm's way. Patients may fall during ill-advised attempts at mobility, become malnourished if left alone for long periods of time, or incur an overdose when responsible for taking their own medication.
The clinician's competency to support and care for the patient is also a factor in ensuring that the patient is safe and can remain at home as long as he or she wishes. Some clinicians feel that the isolation of their working environments can place their patients at risk; hence the need for extremely competent professionals. "I do think there has to be a level of competence to look after patients in this setting. You are working in isolation. And we know that for any clinician working in isolation that the risks to the patient are greater than they are when you are working in a team-based setting such as a hospital where mistakes can be caught by other aspects of the system. There is an increased risk in the home environment where errors in judgment could put particular people at risk."
Some informal caregivers simply do not have the physical, mental, or cognitive capacity to perform the tasks associated with the patient's condition. As one clinician explained, "the husband of a patient watched TV most of the day and did not provide fluids or medication to the patient, which resulted in dehydration and pain. He knows that if the patient doesn't drink that she could get really sick and possibly die but he doesn't understand that it's necessarily his duty to do that, even though she can't get out of bed." Other family caregivers may be elderly or have a chronic illness that limits their physical capacity to assist the patient.
In some cases diminished capacity because of addiction issues results in family members taking the patient's medication, leaving the vulnerable patient in pain and at risk for further complications. "Along the lines of the pain medication, you can only go so far in terms of counting medication or delivering so much at a time. If the family is determined to take it, they will still find a way to do so. I had a situation where ... the patient was afraid to say anything about what the son was doing because the son was his primary caregiver."
Conversely, a supportive but overzealous caregiver may also jeopardize a patient's safety. Such a caregiver may feel that he or she has the capacity to handle the patient's physical care (e.g., bathing) without assistance; precipitating a fall for the patient or an injury to the caregiver. "The issue is that family members will go above and beyond, which is their right to do, but it is not safe! Denial is compassion without reason. They are coming from a good place. They really want mom to have a bath and they're willing to break their own backs. But then when you think about it, if you break your back, then you have two sick people."
The barriers that may impede a clinician's caregiving abilities and thereby impact upon a patient's safety arise from organizational policies, a home's physical environment, or resource management. Clinicians indicated that the maximum number of hours of care allowed by organizations may not be adequate to support the patient to die at home; necessitating a transfer to an inpatient facility against their wishes. Also, the bureaucracy involved in ordering necessary items for the patient is a problem, one can't simply phone in an order, a paper requisition must be received before a device can be delivered to the patient and this can take time and place the patient at risk.
If the patient lives in an unsafe area, clinicians would be concerned about his or her own safety, particularly at night and they indicated that they might not visit as often as needed, which may jeopardize the patient's care. "Certain things are just environment, the fact that you could be in subsidized housing, a low income building, with elevators that don't work, and dark stairs." A home that is disorganized may also impede the ability of a clinician to safely care for the patient. Family members who smoke in the home in the presence of oxygen tanks present a safety risk to both the patient and the clinician. The presence of pets in the home may be problematic for the clinician who is allergic to or fearful of the animal, resulting in a shortened visit that can also compromise the patient's care.
In terms of resource management, some clinicians would appreciate the ability to provide input into the type of resources available to the patient. "We had an example last week. Our manager said that someone had given money and earmarked some of it for palliative care. She was offering it to us for a conference but maybe if we knew that the family had even done this, we would take that same money and instead of flying to a conference or whatever, buy five lock boxes." Lock boxes, similar to those used by real-estate agents, that hang on the outside of a doorknob and contain a secured key, would allow clinicians to access the home safely.
Patients often throw their key out of the window for the healthcare provider as they may "live in apartments without an elevator so they have to come down three flights of stairs to unlock the front door. The risk of a fall with these patients is huge, but to leave the door unlocked is not secure." The costs of lock boxes are perceived by clinicians to be minimal and are outweighed by the benefits of loaning them to their patients because as one clinician stated, "I've had patients that are so poor that they don't even have a phone line" clinicians cannot, therefore, phone and notify the patient that they have arrived for the home care visit.
Participants stated that timely communication between all caregivers, adequate resources, team support, and provider expertise in end-of-life care are factors that can mitigate risks to patient safety in the home setting. And as each patient is unique, clinicians require flexibility to tailor care to the patient's needs. Clinicians also maintain that the vulnerability of patients at the end of life requires specialty education or certification for those who provide such in-home care. Most home care personnel are generalists, and those with experience and skill can competently care for patients. As this population expands, those without experience will also be expected to provide end-of-life care. To do so safely, specialty education or certification is recommended.
Increasingly, as patient care becomes the responsibility of the informal caregiver, these caregivers will also require ongoing education and support to be competent in their role. To provide support to informal caregivers, clinicians require support themselves. Unlike in the hospital setting, clinicians in the home environment cannot easily confer with a colleague. This sense of isolation should be anticipated and discussed during regular staff meetings and contingency plans put into place. In concert with this issue, clinicians also recognize that various professionals tend to practice in "silos." Collaboration across these silos with regular interprofessional meetings will coordinate patient care more effectively and it is hoped, enhance patient safety.
And most important, participants emphasized that the patient, family, and clinician need to work together to identify the specific risks inherent in each home and utilize the experience of the interprofessional team to assist in managing the risks. Clinicians stated that they are not risk averse; they just need everyone to understand what the risks are and "to be on the same page!" As one clinician said, "Sometimes you may walk away from a home visit and it is a good thing a newspaper reporter is not following, because they would not understand why I left this man who is bedridden, with the commode beside him, his medications there, and no one's coming for three more hours. They would think that I wasn't doing my job. But he has said, I want to be here, and my son will come in the evening. I can reach my medication. I will wear the diaper during the day and my son will transfer me to the commode when he gets here."
The strength of this study is in the collection of data from a wide variety of interprofessional clinicians who specialize in end-of-life care in the home setting. Because many of their recommendations revolve around communication issues with both patients and colleagues it is important that home care personnel take note of these findings. Clinicians in the home setting are "guests" in the home and as such they occupy a more nuanced role and have less control than healthcare practitioners in a hospital setting (Kelly, 2013). Therefore, patients and family members who disagree with a plan of care may refuse to allow clinicians into their homes placing the already vulnerable palliative patient at considerable risk. Clinicians are, therefore, advised to become adept in their communication and negotiation skills, and to seek out experienced mentors or further education in this regard (Lingard, 2012).
Clinicians are also cautioned to be aware of patients' understanding of their prognosis. Clinicians at earlier stages of the patient's illness trajectory may not have communicated accurately with the patient about their prognosis. Engaging with the patient and his or her family in a direct manner regarding prognosis allows patients to make decisions about end-of-life care such as eschewing further life-prolonging treatments (which may not be safe) in favor of quality time with friends or family (Ferguson & Rodrigues, 2013).
The results of this study, although limited to the specific geographic area where the study was conducted, address an identified gap in the literature by illustrating the issues that can compromise patient safety at the end of life, and they suggest that flexible, patent-centered care needs to be implemented on a consistent basis to mitigate such issues.
Clinicians in this study are anticipating a "tsunami" of aging individuals who are predicted to overwhelm the healthcare system and they do not want these vulnerable patients to suffer in an overburdened system (Doran et al., 2009b). Additional research with informal caregivers and patients is, therefore, recommended to further identify risk in the home setting along with ways and means of modifying such risk, and determining best practices for the delivery of safe, flexible care to end-of-life patients in their homes.
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