In both Toronto SickKids and Montreal Children’s Hospital, I was struck by the inclusion of the bioethical team into PICU practice, not only to support difficult decision but as part of the psychosocial team to look at how better to support families, and also to support the nursing and medical team to talk through issues or cases on the PICU that might be causing moral distress.
A good definition of moral distress is “When there is incoherence between what one sincerely believes to be right, what one actually does and what actually transpires” (Webster, 2000). Moral distress is prevalent in nursing and in the ICU. Situations where it can occur include where there is the feeling that a patient’s death is being prolonged by aggressive treatment, or (often for the nurse) feeling caught in the middle between what the parents want and what the medical staff want. It can leave the person who experiences it feeling powerless, isolated and unsupported and it can lead to compassion fatigue, burnout and disengagement, all of which can have a negative effect on the morale of the whole team and an impact on patient and family care.
One way that the team at SickKids PICU has decided to tackle this is by starting the CARED rounds – Care and Reflective Ethics Dialogue Rounds. They found that bedside nurses struggled to find a safe space to discuss their concerns, found it hard to access the bioethics team or resources and did not really have a shared language they could use to express their ethical concerns. The CARED round is carried at weekly. It comprises the clinical nurse specialist (CNS) and the bioethicist who walk around the unit and have brief and confidential conversations with the bedside providers where they can discuss any ethical concerns that may have arisen on the unit, whether something specific or a broader topic. As a result of these interactions, the CARED team can identify any problems and provide an intervention or arrange a follow up meeting if necessary, although they have found that often being able to talk through and reflect on the issue with the team is beneficial for the bedside providers. It has been getting good feedback from the bedside team (nurses and respiratory therapists) who have found it relevant, inclusive and adding value to practice. I went and joined in one and was very impressed by the relaxed feel, the good participation and the ethical discussion that started between staff. I would be interested to see what the longer term outcomes of this initiative could be.
In Montreal I met with the wonderful Franco Carnevale who has carried out a lot of work around moral distress. He said that moral distress overwhelmingly affects nurses as they are the ones who spend the most time at the side of the patient. He felt it was vital for nurses to be ethicists and have ethical training, as doctors do, as the nurses have a strong family centred care focus and are advocates for the family. He believes that nurses should have a strong voice in ethical decisions and conversations. At Montreal they have started a whole day workshop for nurses on ethics, which he teaches into, where they train nurses in clinical ethical thinking. This course has had very positive feedback from all those who have attended.
One of the points that Franco made was that nursing-specific ethics helps teach nurses to nurse well, for example to know when to speak up or when to deviate from standard procedure to provide the best care for a family. I spent some time talking to the bioethicist in Toronto and we had a very good discussion in a similar vein – that being ethical and doing the right thing for a family does not always match organisational policy and in order to provide ethical family centred care rules sometimes need to be flexed or broken. The idea is to start the conversation to try and come to an ethically defensible decision.
Moral distress is very subjective and will always occur in PICU by nature of the workload; however, by trying to create an inclusive environment with strong ethical principles, as they are working towards in Toronto and Montreal, where all staff are encouraged to think and reflect ethically and to voice any concerns, the prevalence and the longer term impacts of moral distress might hopefully be reduced, with a positive impact on team morale and family centred care.