Here for the people: The argument for making clinical ethics more patient-centred

Abstract

Healthcare organizations aim to provide excellent, patient-centred care. Many departments within a hospital excel in achieving this goal, but clinical ethics service providers would benefit from becoming more patient-centred. This article considers how ethics services can add a patient-facing component to their strategic direction and work portfolio. Through a case example, suggestions to guide ethics service providers in expanding their duties and responsibilities are provided, including consultation with families and education sessions. This reframing would include clarifying the role of ethics within a healthcare organization, making services more accessible to patients, families and the community, as well as engaging with other disciplines to provide well-rounded patient care. While the work currently being done by clinical ethics services is important and ought to be continued, ethics service providers should strive to achieve the goal of improving patient experiences and directly contribute to the excellent care being provided.

Introduction

Healthcare organizations, such as hospitals, long-term care homes, community health centres, and home care providers, all have a similar goal: to provide excellent care to the people and communities they serve. While all of these institutions may have varying interests or strategies, they all work towards bettering the healthcare system and improving individual well-being. In hospitals, in particular, goals are often relayed through mission statements and value lists, centring primarily on a patient and the care they receive.^1-5

This demonstrates a focus on patient- or person-centred care, which puts the patient first. This concept prioritizes individualized care and specialized services to better meet patient needs. ⁶ This article will continue to use “patient-centred care” to denote this. While this concept is not novel, there has been a significant shift in bringing patient-centred care to the forefront of a hospital’s ethos. ⁷ Overall, patient-centred care has demonstrated benefits in improving clinical outcomes, service delivery, use of resources, and provider satisfaction.^8-11 Furthermore, this approach has been endorsed through the Ontario government’s Excellent Care for All Act (ECFAA) requiring healthcare organizations to implement patient-centred care. ¹²

Challenge

When patient-centred care is not provided successfully, it may cause challenges in fostering a positive relationship between patients/families and their providers, as well as with the hospital, in general. There are always opportunities to improve patient- and family-centred care. This can be demonstrated through a hypothetical case example.

A baby is born prematurely at 24 weeks, requiring neonatal intensive care in hospital. The baby’s parents are visibly anxious about the unexpected birth, and their baby’s chance of survival. They request to speak to the medical team to better understand their rights and responsibilities with regard to decision-making. They do not want prolonged harm and suffering for their child.

The medical team explains that some “harm” may occur, such as needle pricks or temporary breathing challenges, but that it is short-lived and necessary in order to improve their baby’s well-being. The team reiterates that this is normal treatment and they will do everything they can to help their baby.

The parents feel that the team’s behaviour toward them is dismissive and still have unanswered questions about their rights and responsibilities. They also begin noticing that they are being called “difficult” for asking a lot of questions and being anxious. Furthermore, they feel that they are being discriminated against due to being a young couple.

After several weeks of admission, the medical team suggests connecting the couple with a Patient and Family Advisor whose child also received neonatal intensive care. The team also plans to consult an ethicist to see how they can best deal with this “difficult” family.

This case demonstrates multiple challenges in providing care and fostering a trusting and positive relationship between the care team and patients and families. The example also makes clear that family-centred care is not being adequately provided. While this case study gives rise to many issues that should be resolved, only the concept of improving patient- and family-centred care will be addressed.

Discussion

The implementation of patient-centred care differs depending on the care being provided. Organizations may depend on Patient and Family Advisors or Advisory Councils (PFAC) to provide a patient’s or family member’s perspective on strategy, policies, and procedures, and whose members can act as mentors to patients and families receiving care. ¹³ This may satisfy a level of patient-centred care, but ultimately all departments have a responsibility to promote and practise patient-centred care. Some providers or departments do this expertly, whereas others may need to be more proactive in how they provide this type of care. We believe that clinical ethics departments fall into the latter category and should improve the ways they directly interact with patients to improve their treatment and experience. A more family-centred approach from ethics could have alleviated some concerns in the case described. We will return to this notion later.

Typically, the goal of clinical ethics services is to support excellent patient care, thereby promoting patient-centred care through a variety of actions. This often includes ensuring policies are written in a way that takes ethical principles and values into account, supporting staff in upholding patient wishes and autonomous choices, or providing education to staff on patient rights and professional ethical responsibilities. ¹⁴ While goals and responsibilities are similar, types of clinical ethics services often differ between organizations. Some benefit from individual clinical ethicists, who are considered experts and are expected to provide support at all levels of the institution. Other organizations mobilize different professionals, such as physicians or social workers, who have graduate-level education or training in ethics to contribute their knowledge by providing education and supporting research initiatives. ¹⁵ Institutions may also have an ethics committee (either as an independent entity or in conjunction with the above-mentioned examples) which meets to review cases brought forward by staff, approve policies, and create learning opportunities for organization-affiliated groups. Regardless of the methods used to provide clinical ethics services, they should focus on patient-centred care.

Despite the valuable work being done by clinical ethics services, it should be noted that most of the requests for these services come from other staff. For example, a physician may request the presence of an ethicist at a family meeting to ensure that all perspectives are being heard, or a nurse educator may request an education session on substitute decision making, so that nurses are better able to explain to family members their role in the care team for incapable patients. Both of these examples include some contact with patients and families, both direct and indirect, and clearly advance the care being provided, but are not explicitly patient or family-guided. We do not believe that clinical ethics services should cease to provide these types of services, as well as the others previously listed—quite the opposite; an ethical lens should be applied to policies, staff should have a support system to address moral distress, and education must be offered to providers. All of these initiatives support the delivery of high-quality care. We are noticing, however, that clinical ethics work is not often aimed at the patient, or community itself, but rather focuses on the staff looking after them. ¹⁶

Clinical ethics service providers ought to consider how they can improve patient experience directly. Furthermore, healthcare organizations should think about how they can leverage clinical ethics services to directly meet their goal of providing excellent, patient-centred care to individuals and the community. Encouragement from leadership teams to develop and implement strategic directions within clinical ethics departments could be a motivator in promoting this goal. ¹⁷ Ideally, clinical ethics providers should consider developing a strategic action plan that includes a purpose, goals, and expected outcomes related to patient-centred care. For example, “patient-centredness” may be a value to include in the strategic plan, or a goal may include outreach to a local marginalized population.

It is important to reiterate that the work already being done by clinical ethics services can directly influence patient care and patient experience, and, therefore, should continue to be provided. Organizations, including clinical ethics service providers, have to balance direct patient-centred care with considering staff needs and points of view. ⁷ While autonomy is at the forefront of Canadian healthcare, other factors, such as staff safety, burnout, and overall efficiency, must continue to be taken into account. Employees must also have an opportunity to contribute to decision-making processes, while keeping in mind that a healthcare organization’s ultimate purpose is to provide care to others.

By adding a patient- or family-facing component to the collection of previously mentioned essential activities, clinical ethics service providers will be better able to provide well-rounded patient-centred care. This may pose challenges, such as limited resources within ethics departments, but making this shift a priority emphasizes the commitment to an organization’s mission and values and further contributes to a patient-centred culture. ¹⁵ The combination of patient-facing work and support (consultation, education) for staff would be ideal.

In order to effectively implement a more patient-centred approach, certain challenges must be addressed. It can be difficult to explain the role of a clinical ethics service provider (whether an ethicist or ethics committee) to patients and families, as well as to discuss how the provider can be a helpful service to them. Distinctions must be made, for example, between clinical ethics and the legal department, patient relations, and spiritual care, despite all of these departments frequently collaborating to support patients and families more holistically. ¹⁶

Furthermore, organizations should ensure that patients and families have full access to ethics services, such as consultation, education, and collaboration. This is a direct method of improving the visibility of ethics and promoting patient and family-centred care. There is no perfect method of introducing or promoting ethics services to patients and families. Staff may be leveraged to consider when it would be helpful for a patient to speak directly with an ethicist or directly request an ethics consultation and then either put in the request on the patient’s behalf or relay the needed contact information. In the case described above, it would have been prudent for a staff member to recommend speaking to an ethicist at the first inquiry of the family’s rights and responsibilities.

Promoting ethics services could also be done by using screens in lobbies that rotate various information slides to disseminate information on an ethics department or committee and how it may be used. Furthermore, digital or paper information pamphlets could be made available in public areas or on web sites or provided to staff to distribute to patients and families, or to include in admission packages outlining the available ethics services. All of these initiatives would require clear and concise communication, at a level that is understandable to all, including in multiple languages.

Other methods of raising awareness may simply include direct contact with patients and families. For example, on a unit where classes are offered to parents/families (Neonatal Intensive Care or Labour and Delivery) or patients (Rehabilitation), it may be appropriate for an ethicist or ethics service provider to introduce ethics services or to discuss a topic that is relevant (decision-making). This would increase visibility, and provide an opportunity to create a trusting relationship with another member of the healthcare team. This type of initiative may have benefitted the family in the earlier case example, where the ethicist could have introduced themselves in the early stages of their admission process and provided them with information and support, potentially avoiding their negative experiences of dismissal and discrimination.

Furthermore, providing education sessions to PFACs or friends and families of patients is not only a way to promote services, but also to disseminate valuable information. For example, a long-term care home may offer education to residents’ family members on consent and capacity, substitute decision-making, or living at risk so that they are better equipped to make decisions, participate in care, or understand the inner workings of their loved ones’ home. Similarly, community education opportunities, such as sessions on medical assistance in dying or driving with dementia, would disseminate accurate and helpful information, promote ethics services, and also build more trusting relationships between communities and healthcare organizations.

Conclusion

All of the concepts and examples given may have been helpful in the case described earlier. A variety of strategies could have alleviated the challenges that were experienced, but it is clear that a family-centred approach from an ethicist would have been useful. The ethicist could have been referred to speak to the parents about their roles as substitute decision makers, outlining how the consent process in the Neonatal Intensive Care Unit works, as well as provide various perspectives on harm as a means to a positive end. Ideally the ethicist would work with a diverse healthcare team, including medical professionals, social workers, and administration to provide the most excellent care in a difficult situation.

The work of clinical ethics service providers is extremely valuable. It ensures that organizations are held accountable and implement ethical decision-making at all levels. Ethics services provide support to staff and learners who experience moral distress, helping them provide better care to patients, families, and communities. As these organizations progress towards further implementation of patient-centred care, it is crucial that clinical ethics also moves in the same direction. Adding a patient- or family-facing component to the work that is already being done may be challenging or novel, but is necessary in order to meet the ultimate goal of providing excellent care.