Patient-centred care is a complex and constantly evolving concept. It is highly subjective and measurement thereof has been fiercely debated since its origins in the 1960s when the term ‘person- centred’ was first used in the field of psychotherapy. It remains a concept which lacks a universally agreed definition as it depends on the needs and experiences of the person receiving care, the environment in which it is given, and the individuals charged with its delivery. A number of dimensions or principles of ‘patient-centred care’ have been offered and these are considered and applied to the unique needs and challenges presented by patients in assisted reproductive technology settings in this chapter. Put simply, patient-centred care places the patient at the very centre of the care process. However, such an apparently simplistic concept continues to fuel academic and practitioner debate with the complexity of the relationship between patient and care provider being identified as a major obstacle in the development of a single, universally accepted definition.
Patient-centred care is far easier to define for the recipient. Regardless of why we are receiving care and in whatever context, we want to be looked after, treated with respect, supported where necessary, and cured where possible. The definition of patient- centred care from a provider’s perspective appears to be more contentious, however, as its meaning may vary from one provider to the next, and from one environment to another (1). For instance, a doctor undertaking a one-off face-to-face consultation with a patient may consider patient-centred care in an entirely different light than a nurse delivering care to a ward-based patient over a significant period of time. Despite the absence of a universally agreed definition, there is no doubt that patient-centred care is something that providers should strive for and attempt to deliver in the most appropriate form for the person in their care. It has become an internationally recognised and accepted goal for all healthcare providers (2).
Principles of patient-centred care
Patient-centred care plays a central role in ensuring that the emotional and physical needs of the fertility patient are identified and satisfied. While the ultimate aim of ART is to offer the patient effective and successful treatment, the quality of fertility care is far more than the efficacy of one treatment or another. Patient-centred care encompasses a number of principles which, taken together, can enhance the patient experience as well as potentially contribute towards treatment efficacy.
The Picker Institute, an international not-for-profit organisation, which promotes a patient-centred approach in the delivery of health and social care, has developed a useful framework which identifies eight dimensions or principles of patient-centeredness. The dimensions illustrate the elements required for optimal patient-centred care.
- Access to care (includes physical access, waiting times, and transport)
- Respect for patients’ values and needs (includes the patient’s active involvement in decision- making, where possible)
- Coordination and integration of care (includes front line and support care) – Information, communication and education (includes details of clinical aspects of care such as prognosis and treatment)
- Information, communication and education (includes details of clinical aspects of care such as prognosis and treatment)
- Physical comfort (includes pain management and help with daily needs)
- Emotional support and alleviation of fear and anxiety (includes that related to clinical aspects)
- Partner involvement (includes supporting partners and ensuring that they are involved in the care process)
- Continuity and transition (involves care, treatment and support after discharge)
Patient-centeredness in the fertility care setting
Parenthood is viewed in all societies as a rite of passage – the moment when we leave an indelible mark on the world by passing our genes on to the next generation. It is a moment promoted and reinforced by societal norms advocating that parenthood is the pinnacle for which we all should strive. However, for an increasing number of people this gold standard of achievement is often difficult, and sometimes impossible to attain.
For the 10% to 15% of us of reproductive age who struggle with infertility, the inability to achieve this ‘natural’ process is often associated with feelings of depression, anxiety, anger, frustration and isolation which invariably negatively affect our relationships, wellbeing and self-worth. Infertility is so much more than the physical inability to achieve conception at a drop of a hat. Indeed, the link between infertility and a multitude of negative emotional and psychological issues cannot be understated (3-5).
In the context of fertility care and treatment, person- centred care must therefore appreciate the highly specific physical and psychological needs of the fertility patient. It must not narrowly treat the physical condition without an awareness of the influence that infertility can have on relationships, the financial impact of treatment costs, the grief associated with unsuccessful treatment and the utter devastation that the decision to stop treatment without a child has on the patient(s).
One of the most wide-ranging pieces of research into the experiences of fertility patients was undertaken in 2014 (6). The research, which involved nearly 400 patients, highlighted a number of specific needs and desires identified by the patients themselves and showed an apparent gap between these and the assumptions held by treatment providers. These included:
- When searching for fertility care, patients valued the physicians’ attitude most of all, followed by success rates, distance from home to the fertility centre, physician continuity throughout the treatment period and type of fertility centre.
- Fertility care providers, on the other hand, considered success rates (effectiveness) to be the most important factor when recommending a fertility centre.
- Fertility patients and care providers had significantly different views on the value of treatment effectiveness, physician attitude and physician continuity.
- Fertility care providers in the study significantly underestimated the importance of patient-centeredness to fertility patients.
- To deliver optimal care to fertility patients, care providers need to understand the importance of patient-centred care, such as a friendly attitude, sympathy for the patients’ plight, respect for the patients’ right to informed consent and a transparent treatment process.
Implementing patient-centeredness in fertility care
It is important that patient-centred care co-exists with clinical effectiveness if it is to successfully contribute to improving the quality of healthcare. It must be delivered in a measurable way to ensure that both positive and negative aspects of care are identified. The information can then be used to modify or improve the service provided to patients.
Patient-centred care is reliant on health care professionals being able to distinguish between the ‘disease’, the ultimate labelling of the process embodying symptoms, diagnosis and treatment, and ‘illness’ which captures the patient ‘experience’ including their general wellbeing and lifestyle. When healthcare practitioners understand how both interact and affect the patient, they can implement measures to address the disease and the patient’s experience of illness and patient-centred care (7).
It follows that, when healthcare staff acknowledge and accept the patient in terms of both the disease and illness, they can begin to encourage and support the patient to actively participate and engage in each stage of their healthcare, which is a key component of patient-centred care (8). By empowering the patient and increasing both their understanding and confidence in the care and treatment process, The value of care healthcare staff can effectively contribute to the enhancement of patient satisfaction, quality of care given and potentially, to improvements in treatment efficacy (9). Distinguishing between the disease and illness, and planning a patient-centred care strategy is not as straightforward as it might seem. There is mounting evidence to suggest that different patient groups respond to patient-centred interventions in different ways on their treatment pathway. For instance, it has been suggested that patients are less likely to engage in decision-making and communication with healthcare staff as their condition becomes more severe. Patient-centred care strategies therefore need to be flexible and tailored to individual patients and put in practice by staff trained in providing a level of care which supports the physical and emotional needs of each patient.
As summarised by Jayadevappa and Chhatre, “The patient-centred care model that integrates mutually beneficial partnerships among healthcare providers, patients and families has profound implications for the planning, delivery, and evaluation of care.” (10). This is borne out by a review of evidence considering the link between patient experience and clinical effectiveness which identified consistent, positive associations between patient experience and safety and clinical effectiveness when patient-centred care is employed within the healthcare setting (11).
Whilst there is no doubt that there is a strong correlation between patient-centred care strategies, patient satisfaction and clinical effectiveness, the absence of a universally agreed definition has meant that care providers have employed such strategies in different ways. Nevertheless, regardless of how it is implemented, at its core, patient-centred care involves multi-layers of relationships including those between patient and physician; patient and nurse and patient and non-nursing support staff. It is a process that should be employed flexibly and designed to accommodate specific environments or patient groups. It is a process that should be devised jointly between patient and provider, ensuring it is receptive, realistic and effective.
Monitoring patient-centeredness
Patient feedback is essential to allow clinics to continuously strive to improve care and ensure it is patient-centred. Patient-reported experience measures (PREMs) are questionnaires that assess patients’ experiences whilst receiving care and are indicators of quality of care (12). They can be used to monitor the quality of care from the patient’s perspective. Relational PREMs assess patients’ experiences of their encounters with staff during treatment while functional PREMs gauge their perceptions of more practical issues, such as the quality of the clinic’s facilities. PREMs can be administered online and completed anonymously. They help clinics to monitor the standard of care and to take steps to improve care where needed.