Tackling existential distress in palliative care

In the public’s mind, palliative care is associated with relief of suffering.
 
But a surprising amount of end-of-life suffering is not just physical – but existential. And for some, it can cause extreme suffering.
 
Dr Nicola Morgan worked as a GP for more than a decade before becoming a palliative care specialist on the Gold Coast, where she has helped many patients die ‘good deaths’.
 
In that time, she has seen the effects of people grappling with meaning as their days come to an end.
 
‘We are complicated creatures. We are physical, emotional, and spiritual,’ Dr Morgan told newsGP. 

‘I’m not talking about religion, but about what gives you meaning.
 
‘If that part is suffering, that’s existential distress. In specialist palliative care, we see a lot of it.’
 
But Dr Morgan said many patients are not able to express that distress directly.
 
‘It doesn’t necessarily manifest. You have to go searching for it,’ she said. ‘If someone is, within their psyche, struggling deeply, it depends on the individual as to what solution would work.
 
‘If they’re religious, they may need a priest. But it may be totally different.

For a young woman, say, who is going to die soon and will never see her children grow up and their important journeys, you might find the most appropriate solution is to assist in her writing important letters for them to open on special occasions, so she can have closure. It’s complex.
 
‘Sometimes it’s about loss of roles and grieving for them, about not wanting to be in the situation you find yourself in.’
 
Dr Morgan has found that one of the unexpected gifts of working with people who are dying is the opportunity to think these issues though.
 
‘Working with people who are dying gifts us with the opportunity to consider these weighty life issues at an earlier stage of our own lives, before we are in crisis, and that enables us to grow and deepen as human beings,’ she said.
 
It is partly for this reason that palliative care teams include occupational therapists, social workers and psychologists.
 
Andrew Allsop, psychosocial and spiritual support manager for community health and aged care services provider Silver Chain, describes tackling existential and spiritual distress as a key part of quality palliative care.
 
‘If [the patient is] experiencing significant spiritual or existential distress, then it is then trying to get a sense of what is leading to that,’ he said. ‘They may be feeling incredibly isolated, totally disconnected, demoralised and have a sense of hopelessness, because they are struggling to really come to terms with what their life has been about.
 
‘They may need support as they grapple with what has given their life meaning and what will sustain the life they have left.
 
‘Nothing is going to solve [existential distress]. It’s not about trying to fix something. It’s actually being present to that person’s feelings, pain or grief, whatever that might be. It’s then trying to help people develop a sense of meaning where they feel there hasn’t been any, or there isn’t any.’

end-of-life care existential distress palliative care