Conference explores emotional impact on clinicians of supporting terminally ill people

Categories: Care.

Mathematics professor and writer John Allen Paulos expresses a truth that unmistakably resonates with individuals dealing with the issue of health. The challenges of uncertainty take on a particular significance when it comes to the onset of a terminal condition, and standing in the face of a person’s decline and death.

Whilst death may indeed be a certainty, even at the point of palliative care provision there are often deeply challenging levels of uncertainty, that go right to the heart of dilemmas with a myriad of high-stakes consequences.

What do you do when a CT scan shows an uncertain spot on the lung of a person with breast cancer – do you watch and wait with the risk of further spread if it is cancer, or do you start chemotherapy with all the side-effects that entails, only to discover it is not cancer after all?

How do you contend with the dying patient in a hospice who desperately wishes to die at home, but difficult symptoms mean an inevitable struggle to cope and they risk being admitted to, and dying in, a frenetic hospital environment?

What do you say when a terminally ill patient wants to know exactly how long they have left so they can arrange one last precious holiday with their family?

Conundrums of this nature are faced by patients and healthcare professionals every day. Whilst research exploring the issue of uncertainty in the context of advanced illness and approaching death is beginning to emerge, it has yet to be addressed head-on by educators in healthcare training.

In order to shed a spotlight and initiate a wider consideration of the issue, St Giles Hospice organised a healthcare conference dedicated to exploring this. Entitled ‘Between hope and fear – facing uncertainty in life-limiting illness’, the one-day event in July drew clinicians and specialists from across the Midlands, all keen to explore what so many patients and professionals struggle with on a daily basis. The conference was fully booked within weeks.

Nadia Khan, Consultant in Palliative Medicine at St Giles Hospice, said:

“As healthcare professionals looking after people coming to the end of their lives, we deal with it [uncertainty] all the time so it is one of those unspoken things that is fundamental to what we do. I am not sure we have ever articulated it before – it is just assumed it is part of the job.”

“One of the most powerful sessions of the day included insight into how we as human beings deal with the inherent uncertainty of both life and death, through the same innate mechanisms that span across time and geography. Uncertainty can be even more challenging to contend with, in a society where there is a common belief of total control and perfection being possible through self-effort.”

“The use of rituals, whether “superstitious reasoning” or “rational health beliefs,” and the way we harness the creative capacity of language, help us to remove the psychological anxiety associated with uncertainty and achieve a shared sense of firm ground. Being able to understand the nature of these phenomena in patients and ourselves through self-awareness, is vital if we wish to find a way to tolerate, if not flourish, in the face of uncertainty.”

During the conference delegates discussed the different ways clinicians handle uncertainty as well as the varied ways patients deal with it.

According to Chantal Meystre, Consultant and Lead Clinician for Palliative Medicine at the Heart of England NHS Trust, sharing the burden with colleagues is helpful. She said:

 “There is a lot of uncertainty for patients around life-limiting illness but it can be personally costly for clinicians too. Decisions made are mulled over and staff try hard to hang onto the right thing to do but wonder how they will feel when they get home.”

“There is a degree of burden holding – not being sure of the correct way forward but needing to have control of situations for patients and staff around us. The internal dilemmas that involve managing patient reactions and their own responses are immense. Did I do the right thing? Why did I not challenge? Have I exaggerated? What will colleagues think?”

When it comes to patients dealing with the uncertainty of advanced illness and impending death, Dr Sheila Popert, Medical Director of St Giles Hospice, said there is a fine balance between nurturing hope and truth telling. She explained:

“We have to respect denial as a coping mechanism. 20 per cent of patients do not want to discuss prognostic information. There is no point compelling people to hear bad news. We need to ask patients and loved ones how much they want to know and avoid shutting down or ending opportunities to discuss emotions.”

“As the illness progresses there is often a change in focus from hope for a spontaneous cure to hope of living longer to hope of a peaceful death. We can nurture hope by helping patients refocus their goals.”

Nadia Khan agreed, but stressed that the emotional toll on the clinician also has to be addressed. She said:

“In most scenarios, it is not as clear cut as diagnosis and treatment. Some patients will feel they are not getting the answers they need or that the doctor or healthcare professional has made the wrong decision. They struggle to accept the fact that things are just not black and white and decision-making can be hugely complex. That is where a lot of tension comes through for clinicians. You just plough on with work normally but it does take an emotional toll.”

“It is important for healthcare professionals to take time and consider how they can handle their own emotional state in healthy ways and engage in self-care. It is about having that self-awareness and knowing we are not in it alone.”

Nadia said the conference had been so successful there was already talk of organising another which could ultimately lead to more educational options being explored.

“We are just at the beginning of exploring uncertainty within the palliative care setting but it could be the start of a real culture change. The next steps are to create more confidence around how we tangibly grapple with clinical and psychological uncertainty, and start to deepen our understanding of the approaches we can use to deal with it. This in turn will allow us to relieve some of the distress associated with the experience of facing life-limiting illness.”

For more information visit St Giles Hospice

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