Is Supporting Caregivers of the Terminally Ill Effective?

In the second guest post in our special series for Hospice Care Week, hospital chaplain Reverend David Southall reflects on his work and what research can tell us about supporting caregivers 

“There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy.”

Let me start in an unusual place! In his beautiful poem A Child’s Christmas in Wales, Dylan Thomas recounts the Christmas presents he had from his relatives including “ books which told me everything about the wasp, except why.”

As a modernist academic I rail against this; evidence, research, process and analysis are the tools of my trade. But as a post-modern Chaplain, involved in providing spiritual and pastoral care, I get the point.

Some things are difficult to measure. Try to measure the love one human being has for another; or the strength of a relationship; or love and truth and beauty. Or in a palliative care setting, try to measure the efficacy of the emotional care given to a patient. In fact, it begins to seem that some of the most important existential virtues are beyond the reach of evidence based research.

Hopefully, however, you note that I said “difficult to measure” not “impossible”. I’m not willing to throw in the research towel yet. It just means we have to try harder and with more creativity with those things that seem intangible.

Can we measure care and compassion?

And excitingly, this comes to the fore in palliative care. How do we measure the effectiveness of the love and support which is given to patients in their last hours or to their loved ones caring for them? Indeed, how do we even define care and support? Can an evidence based process ever get to plumb the depths of this fragment of human experience?

Let me help with a narrative.

young hands holding old hand

Caring for caregivers. Is emotional care beyond the reach of research?

Trudy’s mum was dying. Not only that she was dying in an acute hospital. And so, for days, in a side room, Trudy, her Dad and sister sat with Mum. I knew them because Trudy was a staff member and as part of my duties I visited them regularly as we saw Beryl slip slowly from this life. I sat with them in silence and at times I invited them to tell me about Beryl’s life. At other times they asked me to pray for Mum, and, in the rawest times, they verbalised their fears of what life would be like without Beryl. And in between they spoke about how they were feeling and the challenges of the situation.

Not an unusual situation for a chaplain, or indeed any health care professional working with the terminally ill. And after 10 days Beryl died.

Now it remains my belief that I did something healing in my time with this family. I believe I helped the family cope better in their situation. I trust that my interventions helped them in their psychological distress.

But are any of these beliefs in line with reality? Well, there was no chance to have a full scale randomized control trial! There was no possibility of a control group! I have only the anecdotal response from the patient’s relatives which can be found on my Chaplain’s Blog at www.revdavidsouthall.com.

So did I do something of import for these caregivers at an important time of their lives? Well maybe…

And yes research can help us

An interesting Cochrane review of studies which involved support given to caregivers when their relatives were in the terminal phase is found here.

The review examines 11 studies which look at supportive interventions given to informal caregivers of patients with a terminal illness, and asks if the support received made any qualitative difference to the caregivers.

In analysing the results it suggests the following conclusions:

Firstly, it seems that supporting the caregiver can reduce psychological distress in the short term.

Secondly, it seems that caregivers’ coping skills and quality of life may marginally improve, if they are in receipt of supportive interventions.

On some other issues though, the statistical significance diminishes further. So there was no sleep improvement and, more alarmingly, one subgroup of people reported higher levels of family conflict rather than its amelioration.

It seems that the conclusions reached by this review of supportive interventions for caregivers hardly gives a resounding “yes” to my question of whether I did something important for Beryl’s family. Rather, we are left with the sense that there is a “strong possibility” that support decreases psychological distress and increases coping skills.

Glimpsing possibilities

So perhaps Dylan Thomas and Shakespeare are right after all. Perhaps there are things, in reality, which defy measurement. Perhaps it is impossible to ‘prove’ that prayer might help people improve more quickly; or that patients get better more quickly in a room with a window; or that kindness and compassion have an impact on patients’ psychological well-being.

I, however, take a different road. I appreciate the view of those who say some things are just too numinous to research, and I say “yes, for now at least.” But all progress in knowledge has come via paradigmatic shifts which opened new vistas.

And so I welcome the glimmers of assertion from the study. And, given that all good research is provisional, I take this study as offering a tentative glimpse into how such important research should be undertaken.

For me, the import of this short review is not so much geared around the conclusions but around the possibilities, along with the following challenge: how do we ask the right questions and use the right tools to measure outcomes- even the more existential.

I’m confident that my intervention in the “Beryl narrative” made a significant difference to her family in probably one of the most difficult times in their lives. And I am optimistic that, in the future, backed up by robust, high quality, statistically-significant research, we can demonstrate this beyond dispute.

The challenge is just finding out how.

Links:

Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews 2011, Issue 6. Art. No.: CD007617. DOI: 10.1002/14651858.CD007617.pub2.

Cochrane summary http://summaries.cochrane.org/CD007617/COMMUN_interventions-for-supporting-family-and-friends-of-patients-at-the-end-of-life

 

 


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About David Southall

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David Southall is Chaplain at Worcestershire Acute NHS Trust and has an interest in Palliative Medicine. His published works in this field revolve around how metaphor and narrative are used by terminal patients to explore their situations and to create new ways of seeing the world (details of which can be found on LinkedIn https://www.linkedin.com/profile/view?id=248174200&trk=nav_responsive_tab_profile ). He believes that narratives form the way we structure the world and our place within it. He is an avid bloggeer via his award winning Chaplain's Blog in which he recounts patients stories and reflections upon these. He is also active on Twitter @revdavesouthall and @WeChaplains, attempting to stimulate discourse on spiritual care in a healthcare setting. David is a post-modern, research-minded, motorcycling Chaplain.

2 Comments on this post

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    I would just like to highlight the importance of also addressing the mental strain, stress and even burnout experienced by the healthcare workers who cannot avoid being exposed to emotionally draining situations such as occur in palliative care. I am happy to say we are very close to publishing our review update summarizing the evidence on this very topic. Hopefully I can also write a post on it for this exquisite blog. Stay tuned.

    Jani Ruotsalainen / Reply
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    And here it is, our updated review on preventing stress in healthcare workers: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD002892.pub3/abstract

    Jani Ruotsalainen / Reply

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