The words we never said

Most of us have hesitated what to say and do around a bereaved person. Can a realist review help, at least a little?

A blog for the Evidence Synthesis Working Group written by Dr Mila Petrova, Centre for Cambridge Palliative and End of Life Care Group, Primary Care Unit, University of Cambridge

The dark bronze envelope

There is a dark bronze envelope at the bottom-most drawer of my bedroom wardrobe. I have carried it through four house moves over the last three and a half years. I have neither been able to open it, nor throw it away (as much as I often halve my possessions when moving houses).

It holds a letter I wrote to the then teenage daughter of a colleague who died in her early 40s. I will call my colleague Laura. It will only work in Facebook-world to say that Laura was a friend. We didn’t overlap enough to feel if we wanted to be friends. A ‘colleague’ is fair. But her death unravelled me. Maybe because I learnt of her illness soon after a lunchbreak where we spat half of our pasta and vegetables as we couldn’t stop laughing. Maybe because she died of the same tumor as my aunt, who also died ahead of her time and also left two daughters behind. Maybe because I wasn’t that many years younger than her.

What do you say? Mostly nothing

I got the news on a day when I was leading a conference on Electronic Palliative Care Coordination Systems. It arrived email upon email with the news of the aggressive recurrence of the cancer of another colleague. It felt as if the floors had turned quicksand in minutes but, also, that our research – in palliative and end of life care – mattered. I said something to that effect in my concluding remarks at the conference.

It is not that I expected to be consoled. But out of 45 or so delegates who stayed till the end, out of 20 or so who said good-bye personally, only four acknowledged what I had said. Interesting, an audience of people committed to end of life care who say nothing to a person who’s just mentioned a death and a relapse and apologised for the shaking in her voice. Of course, there are many ways to explain it. But still – interesting.

I have a rule not to lie when I am asked how I am (though with appropriate appreciation of context and the resulting levels of clarity). I ended up mentioning Laura’s death on several occasions in the week preceding her funeral. My colleagues at the Cambridge Palliative and End of Life Care research group were the only people who responded adequately. Other than that, I would get a brief silence, a scared look or inarticulate sound, followed by a change of topic or exit from the situation. A couple of times it was ‘it will all be fine soon’. The two emails I wrote to cancel social commitments received no response. Even my family were unimpressive. My Dad, who loves to have the upper hand in suffering and existential angst, was a particular classic. Of course he had suffered more when his colleague, but also true friend, died of cancer when she was in her early 40s.

We hesitate and miss the moment

Those are not judgements. Not now, not then. My mind was registering observations. It was also shaping a belief that there is a dire need for research and improved social conversation on bereavement.

Expressing condolences is not easy. The rules of supporting the bereaved are not clear. The rules of who counts as a bereaved are not clear either. Heck, even end of life care professionals passed on my words in silence. Even my family did not sense that I was more disturbed than the closeness of the relationship ‘justified’. And, most importantly, the sealed bronze envelope is evidence that I couldn’t decide what to do either.

I sobbed and cried a lot at the funeral, even though I hardly had the ‘right’ to. I stood at the outermost circle, the marginal presence I believed myself to be: at best a little bright speck in Laura’s life, the equivalent of her in mine. I have met her two girls twice (though heard of them often) and her husband once (I hardly recognized him, he had lost about 20 kilos since that time). I knew nobody else of her family. I can’t remember if there was a moment of forming a neat queue at the burial ground to express our condolences to them formally. If there was, I’d done it. If there wasn’t, I didn’t feel something was off. It was a non-traditional, life-affirming funeral. It could have been either way.

But I remember a moment when I needed to decide how fast to walk. Walk as I did, I was heading straight into her Dad, whom I’d never met. Adjust my pace up or down, and I wouldn’t need to face him. ‘I don’t know him, he doesn’t know me, and who am I at all?! Who am I to say something to him? What do I know about losing a child?!’. Legs slow down. ‘It could have been you in that coffin. It could have been your Dad standing by it.’ Legs hasten to face Laura’s Dad.

I introduced myself. Said that I was so incredibly sorry for his loss. That it broke my heart even to imagine it could have been my Dad standing there, that I can’t even begin to feel what it must feel for him. We spoke for a few minutes. He wanted to know about me and how I knew his daughter. The man visibly appreciated my words. I too felt a sense of peace and rightness for having done something worth doing.

Later in the village hall, I went over to hug and speak to Laura’s teenage daughter, the one for whom I had written the letter. It felt good, right, true, heart-breaking, open-hearted again. I told her there was a letter I’d written for her, that I would leave it somewhere there, along with a toy for her little sister.

And then I didn’t. Or, rather, I did, but picked them back when I was leaving.

I can’t remember the fullness of my thoughts. The formal reason was that I wanted to pack the toy, with her sad eyes, better.

Of course, this was not the real reason. I was worried what my letter – of memories of Laura, of compassion and reassurance for her daughter – could do. I was worried if my words were good enough. I was worried because my words can, sometimes, be more precise than you expect. I give those precise words to your pain to show you that I try to understand, that I want to understand and that I feel for you. I won’t run away scared by your pain. And maybe I sharpen it rather than console.  The way to hell is paved with good intentions.

I had intended to give the things for the kids to Laura’s husband so that he can decide what to do with them. But the man was a ghost, a fraction of the person he used to be. And, as becomes a ghost, he disappeared from the village hall at some point. I decided it’s crucial to repack the toy.

In the weeks that followed, I wrote a letter to Laura’s husband, repacked the toy, got a cardboard box and the address of the family. I never sent anything.

A SPCR review on complicated grief

Almost four years later, I am part of a team that has prepared the protocol for a realist review on the management of complicated grief in primary care in the UK . I don’t know if anyone in Laura’s family suffered from complicated grief, but the likelihood is higher when a person dies so young, so ahead of their time, so unfairly and cruelly, as we may think of it. (By the way, prepare for a change of style from the personal to the scientific).

In those early stages, we use “complicated grief” relatively loosely – as any experience of death-related grief and/or bereavement which is seen as protracted, complex and out of proportion with the cultural norm. One of our first tasks will be to clarify the concept and how it relates to concepts such as "complex grief", "complex bereavement", "protracted grief", formal diagnostic categories (e.g. "prolonged grief disorder” as in ICD 11), and candidate disorders (e.g. Persistent Complex Bereavement Disorder, as proposed for further investigation under DSM V).

Our goal then will be to identify what approaches, tools, services, programmes, etc. have been used to identify and manage complicated grief in primary care and community settings in the UK. We will not be asking which of them work and which don’t. In the realist framework, all social programmes (including healthcare programmes) work for some people, some of the time, under some circumstances.

Realist explanations take the form of CMO configurations – of contexts, mechanisms and outcomes weaved together into explanatory claims. Some contexts set our intended mechanisms in motion or facilitate their functioning. They thus lead to the outcomes we are seeking. Other contexts block or slow the mechanisms we want to get triggered. In a complex social environment and with people having an agency of their own, there are also many mechanisms and contexts, both propitious and antagonistic, which programme designers haven’t accounted for.

For instance, a community programme for managing complicated grief may involve convening a group of spouses who have lost a partner to cancer and are now the sole parent of their kids. Feeling supported by people who know your pain from the inside is assumed to be a key mechanism through which the group can help you. But, on the other hand, feeling the despair of all those around you may lock you further in your pain. Who else is in the group with you and what your broader support network is like are, potentially, some of the contexts that may explain the variability of outcomes across participants and settings.

The mechanism which took four years to uncover

Our team will be starting the review this summer (2019), with outcomes expected a year onwards. I hope it’s a good, robust, informative review. It will answer some key questions; it will not be able to answer many more, as any literature review does and doesn’t. But, weirdly, I answered my biggest question right here, in writing this blog.

I should have given the letter, not left it there on the tables, not taken it away with me, but given it to Laura’s Dad, not her husband. To the man I ended up talking to, not to the poor ghost of a person I could hardly recognize. A grand-father too can make a judgement about what’s good for his teenage grand-daughter better than a woman who has met her twice.

I know it’s late. But it’s ok. I have worked out the mechanism. I hope I never again write a letter to a kid whose mum has died, but I will remember that that kid has close people other than her dad. And that I will have spoken to some of them.

So simple, so obvious. And yet it took me four years and a blog to connect the dots.

***

When I next move, I trust I will let the sealed bronze envelope and its letter go.

Its writing didn’t serve its purpose.

But its keeping has.

If you may be interested in being part of a Patient and Public Involvement group supporting this review, please get in touch with us at mp686@medschl.cam.ac.uk.