Be In Charge Of Your End-Of-Life Care Wishes

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Be In Charge Of Your End-Of-Life Care Wishes

Prognosis can be a complex component of patient care for doctors and nurses, alongside the difficult task of discussing this with people with a life-limiting illness. With so many factors to consider for such a crucial component of care, more attention needs to be focused on how and where clinical teams have these conversations and make decisions with patients and their loved ones.

Researcher, nurse and Assistant Professor at the University of Canberra, Doctor Kasia Bail, understands the impact of difficult prognosis communication all too well. Dr Bail researches how nurses navigate complex care in hospital and how to achieve individualised patient-focused care. In her experience in conducting research projects over the years (and her additional work by many bedsides), Dr Bail expresses the importance of prognosis communication and suitable environments for these discussions to take place.

Communicating prognosis is multifaceted, and affected by of the intersections of different cultures, history, values, perceptions as well as underlying funding models driving the delivery of care. Dr Bail emphasises that people need to have an understanding of their own values and the values of the person they are talking to, in order for good communication, and especially prognosis communication, to occur.

“Communication is essentially coming to a shared understanding. It is more than the exchange of information,” Dr Bail said.

Having effective communication between clinicians and patients allow a shared outcome to be achieved.

“Determining a person’s care goals should be at the beginning of every relationship. I try to start every shift with asking the patient what is the most important thing I can do for you today?” Dr Bail said.

Working in palliative care units for a number of years, Dr Bail found what she loved most was identifying a patient’s wishes and then helping to achieve them.

“I ended up working in palliative care because I found, unfortunately, that it was the only time that we finally listened to the patient. We had to wait until they were dying before we actually did what they wanted and before their preferences became our highest prerogative.”

In order to positively impact care and improve prognosis communication, patients and carers need to express their opinions on the psychosocial aspects of the prognosis and communicate their wishes to the medical team to ensure a tailored approach to care. Whether it be to see the sky at least once a day or simply receive medications on time, patients must communicate their needs and wishes to their medical team.

Dr Bail recommends to patients and carers to be in charge of the psychosocial aspects of prognosis.

“Let the doctors and clinical teams stay in charge of the scientific aspects of the prognosis communication. But patients need to bring conversations back to them, so that their life goals are being tied into the pathway of their treatment goals.

“Know what you want out of life, so that the health care team can work out the best combination of treatments, risks and side effects that are in line with your highest priorities,” Bail said.

Due to the biomedical focus on disease and prevention, multi-disciplinary team members have regular team meetings, however Dr Bail says they are clinical in nature with the patient often absent from the conversation, and minimal emphasis of the psychosocial aspects or implications of prognosis. Dr Bail expresses the importance of these conversations taking place in the presence of both the medical team and the patient (and carer) to allow equal voice in the decision making process.

“Conversations need to happen where the weighting of psychosocial factors are as equivalent as the scientific decisions where neither of them take prominence over the other. These conversations need to be valued as they are part of the care delivery and time needs to be taken to invest in them,” Dr Bail said.

The environments available for these conversations to take place can also have a negative effect on prognosis communication. It is common in hospital settings to have small nursing desks and limited computer space which are often located in public spaces.

“If you want doctors and nurses to talk to each other and you want them talking to the patients, there needs to be an environment that enables the conversation.

“If we want good communication, we have to pay for it,” Dr Bail said.

For the future of good prognosis communication, the focus needs to be on improving these conversations and acknowledging they are interventions that are essential for delivery of quality hospital care.