There was a ray of hope about a caring encounter and about being treated like a unique human being.
The Essence of Quality: The Customer’s Perspective
For the elderly, hospital admission for surgery is a challenging event, and during a hospital stay a number of central events occur, from admission, to transfer to various wards, to discharge. In a patient-centered vision of care delivery, data from both quantitative and qualitative research should be studied and analyzed, and results considered comparatively.
An example shows the enormous gap between those approaches. In quantitative research, patients are observed when “eating in the best way their missing molars allow,” or “trying to keep in their (trembling) hands the number of pills the nurse delivers them every morning” (Uhrenfeldt and Terp Hoybye 2014). In quantitative research, risk of malnutrition is a subject of nutritional epidemiology, and poly-medication can become a riskier condition when accompanied by hearing and visual impairment. Both findings are “true”; however, it seems that no reciprocal knowledge exists between these fields of research and that patient difficulties highlighted in qualitative studies remain unknown to clinical researchers.
In times of resource shortages and increases in the elderly population, these findings suggest that there is a strong need to merge such different “truths” into a unique picture.
A Literature Overview
Literature on patient perception about health treatments ranges from traditional, quantitative research, to novel, qualitative research. In specific reference to the elderly, the literature is sparse and only a few reviews are found. Cardiac, orthopedic and cancer are the most studied surgical areas.
A systematic approach is seldom encountered, and only fragmented reports investigating non-homogenous aspects can be found. In addition to the medical research literature, publications issued by institutions dealing with quality of services (NCEPOD 2010, Picker Institute Europe) and investigations made by professional associations (RCoA Patient Liaison Group 2011) or charity organizations (DIPEx) are available.
Whereas quantitative research originated in the natural sciences such as biology, chemistry and physics, qualitative research has its roots in anthropology, philosophy and sociology. This explains the enormous differences between the methods of research adopted in these fields (see Table 50.1).
|Aim||Exploration of participants’ world and experiences||Search for causal explanations|
|Understanding, generation of theories from data observation||Testing hypotheses, prediction, control|
|Approach||Broad focus||Narrow focus|
|Context-bound, mostly natural settings getting close to the data||Context-free, often in artificial or laboratory setting|
|Sample||Participants, informants||Respondents, participants|
|Sampling units such as place, time and concepts||Randomized sampling|
|Sample frame fixed before research starts|
|Data collection||In-depth non-standardized interviews||Questionnaire, standardized interviews|
|Participant observation/fieldwork||Tightly structured observation|
|Documents, photographs, videos||Documents|
|Randomized controlled trials|
|Analysis||Thematic, constant comparative analysis||Statistical analysis|
|Grounded theory, ethnographic analysis,|
|Outcome||A story, an ethnography, a theory||Measurable results|
|Relationships||Direct involvement of researcher||Limited involvement of researcher|
|Research relationship close||Research relationship distant|
|Rigor||Trustworthiness, authenticity||Internal/external validity, reliability|
|Typicality and transferability||Generalizability|
Many studies have been conducted using a small number of observations, which could be considered a limitation. Others have been conducted with a phenomenological (researchers investigate the subjects and objects of a person’s experience) or ethnographic (researchers observe patient behaviors with the same attitude ethnographers use in investigating different peoples and cultures) approach. Qualitative content analysis (Graneheim and Lundman 2004) was used to identify “units of meaning”, sub-themes and themes that emerged from questionnaires or interviews. Such methodologies often produce more theoretical hypothesises than measurable data; however, these studies are nevertheless important.
Several such studies were conducted by nurses and represent a valid contribution to understanding patient needs in the framework of a team-based approach.
Surgical Specialties and their Impact on Older Persons
Research on lived experience in geriatric surgery focuses on three main domains: cardiac, orthopedic and cancer surgery. This is not by chance: on one hand, these operations are frequently performed on older patients, on the other they are all challenging for the patient.
All these sub-specialties have been recognized to exert a deep impact on the coping abilities of patients, influencing both mental outlook and physical status, and modifying quality of life (QoL) after surgery.
Cardiac surgery (see Chapter 26) is more and more frequently performed with positive results in octogenarians and the number has risen by almost 20% since the eighties (Ganske 2006). Whereas scientific knowledge is widely available about positive outcomes in the elderly, few studies have investigated their lived experience.
Cardiac surgery has been reported as a “complex, multifaceted and distressing procedure for older people” (Cleasson Lingehall et al. 2015) and as “a major life-threatening event,” that comes with “a strong encroachment on the person’s body and integrity” (Gardner et al. 2005). Women undergoing a coronary artery bypass graft (CABG) endured physical and emotional distress while waiting for surgery and functional limitations after surgery, which required them to accept their changed condition and reassess their state of normality (Banner et al. 2012). Recovery and rehabilitation after surgery were reported to be complex processes with both short- and long-term effects (Tolmie et al. 2006). Postoperative delirium, which occurs frequently after surgery in older patients (see Chapters 14 and 38), was reported to be a “unique, fearful, traumatic and unpleasant experience”; patients felt “drained of viability” and “ trapped in a weird world” and even one year later feelings of extreme vulnerability and frailty were described (Cleasson Lingehall et al. 2015).
Studies investigating the problems experienced by the families of octogenarians undergoing CABG and conducted with a hermeneutic/phenomenological approach reported that a great deal of work was required to manage both emotional and pragmatic patient reactions (Ganske 2006).
Aging predisposes to cancer development; when it occurs in the elderly, its impact superimposes on the challenge of getting older, comorbidity, impaired functional status and reduced response to stress. Colon, prostate and breast are the most frequent cancers among the elderly (see Chapter 23).
Cancer is a disease, but also a series of experiences that profoundly affect patients and their relatives. Uncertainty, vulnerability, isolation, discomfort and redefinition were found to be experienced by nine cancer patients studied by Halldorsdottir and Hamrin (1996). In a study with a hermeneutic-phenomenologic approach on 10 older patients undergoing prostate cancer surgery, the themes identified included “living in unknown,” “yearning to understand and know,” “struggling with unreliability of body,” “bearing the diagnosis of cancer,” “shifting priorities in the gap” and “feeling comfort in the presence of others” (Krumwiede and Krumwiede 2012).
In a longitudinal cohort study of 563 women, 67 years and older, affected by stage I–II breast cancer, body image was considered important and predicted the quality of mental health two years after surgery (Figueiredo et al. 2004). Other studies confirmed that body image and “the need to be treated as individuals” are important issues for older women; not being offered reconstructive surgery due to their age was perceived as a violation of their rights.
Colorectal cancer is accompanied by intense physical and psychological challenges; fatigue, nausea and pain are common in the days after surgery, whereas vulnerability, living under threat and uncertainty are long-lasting distressing factors. The impact of colostomy on quality of life is significant. Physical problems include irritation and rash around the ostomy site, sleep disturbance and gas emission that demand changes in lifestyle (Brown and Randle 2005). Some studies using a descriptive-phenomenological approach and investigating older patients undergoing fast-track colon surgery (see Chapter 34) showed that this program led to a degree of tension, as they experienced how this regimen worked both with them and against them (Norlyk 2011). This emphasizes the importance of involving patients and fully informing them about the advantages of such an approach.
After cancer surgery and state-of-the-art treatments, additional care is positively received by female patients. For instance, postoperative aromatherapy was perceived as a treatment offering physical and psychological overall comfort, relaxation, reduced pain, muscular tension, lymphedema and numbness, improved sleep, energy and appetite, and was reported as “a pampering experience capable of communicating the feeling of being cared for with a sense of dignity preserved and communicating with a failing body” (Kwong et al. 2017).
Both osteoarthritis and falls contribute to a high number of orthopedic procedures being performed on older patients. After surgery, patients require care, effective pain relief, good nutrition, early mobilization and rehabilitation, which are fundamental to a rapid attainment of independence, and reduced postoperative complications and costs.
Due to its frequency, hip fracture has been defined an “epidemic” among older adults. It can be considered the prototype of emergent surgery in the elderly and represents a unique challenge for both patients and professionals. Critical areas reported by patients and their relatives encompassed insufficient pain relief, lack of communication and information, uncaring attitude of professionals, variations in staffing levels over the week and lack of care continuity after discharge. The epitome of the lived experience of hip fracture can be found in Anaesthesia News (Walker 2011).
Research on patient perspective after different orthopedic surgeries found that a positive mental outlook, learning to cope with pain and accepting temporary loss of independence are needed to manage the rehabilitation process (Perry et al. 2011a).
A review by Tay Swee Cheng et al. (2015) identified one main theme, “Perioperative experience and QoL and health-related QoL,” and categorized eight sub-themes, four of which were related to the care process (“waiting time,” “coping and social support,” “patient education,” “care continuity”) and four related to patient specificities (“pain and disability,” “mental health,” “race/ethnicity/age/gender,” “body image”).
Another study by Perry et al. (2011b) on lower limb orthopedic surgery, showed that only three patients of eleven played an active role in their discharge, all required family support and many were left unsure about how and when to return to usual activities. Identified themes were: “lack of shared decision about discharge,” “dependent on family” and “error in rehabilitation.”
A study exploring patients’ lived experience after hip and knee fast-track surgery identified pain and information as areas of major concern (Specht et al. 2016).
Themes that Emerged from Study Analysis
In the “stress and coping” literature, it is generally recognized that the degree of control individuals express in different stressful situations (threat or challenge) varies with aging. Proponents of the growth hypothesis argue that age-related changes in coping are incremental thoughout life and that with aging, individuals become both more effective copers and less likely to adopt immature, maladaptive mechanisms such as “escaping” and “self-blame,” which are usually associated with intense emotional stress. The proponents of regression hypothesis argue that with aging, individuals become more rigid and prone to adopt ineffective coping strategies, moving from active to passive models of solving problems.
Studies investigating mental outlook reported that, whereas challenging situations are generally seen as controllable, threatening situations are not, suggesting that both age-related changes in coping – incremental and regression – may coexist and influence coping behaviors. Interindividual variations can obviously be influenced by cultural level and personality type. Emotional state was frequently dominated by the feeling of facing the unknown and yearning to understand.
Concerns About Physical Status
In all studies, a causal relationship was found between the acute need for healthcare and a feeling of vulnerability.
During a hospital stay, the patients’ main concerns were about pain. This reflects the obstacles the elderly encounter in communication regarding pain, especially in cases of cognitive impairment, and confirms that pain relief continues to represent a critical unmet need for such patients (see Chapter 32).
Difficulties in food intake were frequently reported, due partly to patient-related factors such as oral cavity and teeth health, drug-induced xerostomia, reduced appetite or nausea, and partly to organizational reasons, such as meals distributed by non-educated workers, little control of what is eaten and what is refused, and environmental conditions (Uhrenfeldt and Terp Hoybye 2014).
At discharge, concerns mostly regarded loss of autonomy, functional impairment and QoL after surgery. Uncertainty about body limits and coping with a cancer diagnosis prevailed. Despite their age, changes in body image represented a source of discomfort and malaise for patients.
Events that are part of the hospital routine are basically inspired by the need to obtain a good outcome and are often conditioned by economical restraints and the desire for efficiency. In many cases this requires patients to be forced to adapt to care routines and processes in a way that can be challenging for older people.
Studies reported that discomfort and malaise frequently occurred as a consequence of participating in the care process. Waiting times – often unavoidable, even in well-organized institutions – were badly tolerated by the elderly, who are often anxious about delays with no apparent reason. Another cause of discomfort was being moved between wards many times during a hospital stay, a circumstance that patients reported as “feeling like a cargo” (Cleasson Lingehall et al. 2015).
Despite early mobilization and re-alimentation being fundamental to postoperative recovery, being forced to get out of bed, and walking around or eating food without adequate information and motivation, was reported to be extremely difficult for patients experiencing fatigue, nausea or pain.
At discharge, the main areas of discomfort were related to the need for continuity of care and social support.
Implications for Practice: Capturing the Lived Experience
Quality in medicine usually deals with outcomes and process control; customer satisfaction (which is by definition pivotal for quality in accordance with international standards) is less frequently investigated because – in clinical research – observable, measurable items are objectively preferred to subjectively evaluated parameters. So, the majority of investigations on perceived quality of health treatments have been conducted through questionnaires conceived from the researcher’s point of view, and consequently unable to capture real lived experience.
In recent times, under the influence of psychological disciplines and following criticism of a certain paternalistic vision of medicine dominating patient–doctor relationships in the past, the patient’s right to influence decisions about treatment has become both prominent and fully recognized, and a rich area of research was initiated, bringing patient experience to the surface, together with the right to make conscious choices about care treatments. Going beyond technicalities and considering such issues as a part of the care process is a further, all-important skill for today’s doctors and nurses. Today, the importance of qualitative research is enhanced; inputs from it, even considering the small sample sizes investigated, may guide identification of uncovered areas and interventions for improvement. These studies have highlighted details that, even though implicit in the condition of being older, are often ignored by staff. Areas found to be overlooked or incompletely covered are healthcare needs, care processes and relational aspects. Human experience is rightly becoming the main epistemological basis for research on quality.
An adequate knowledge of the fundamental care principles in geriatric surgery should become part of basic education for both healthcare managers and staff. Comprehensive geriatric assessment, regretfully not used in these studies, should be implemented as routine practice in patient evaluation to identify specific needs and vulnerabilities. Despite its frequency, postoperative delirium was reported to be poorly recognized and managed by staff. Pain treatment was confirmed as being insufficient, as the elderly tend to try to be “good patients,” can be cognitively impaired and thus hampered in communicating. Healthcare staff should be instructed in the use of pain evaluation tools for cognitively impaired persons, such as PAINAD or others described in Chapter 32. Pain related to rehabilitation should also be treated, to improve patient compliance.
Nutrition at the hospital is another critical area; oral health evaluation – together with environmental factors playing against effective and appreciable nutrition, such as meal distribution, suboptimal environment etc. – should be carefully evaluated.