Originally from The Guardian
‘Our oncology team were amazing: they left no stone unturned. But her mental health problems remained untreated.’ Photograph: View Pictures/UIG via Getty Images
The NHS is simply not equipped to meet the psychological needs of the dying – and that has to change
My wife died a few months ago from cancer after battling it bravely for almost three years. The physical symptoms were so tough: pain, nausea, loss of mobility, and others too distressing to talk about here.
But the suffering she endured from the moment she received her diagnosis, until she entered the hospice where she ended her days, was almost entirely down to the difficulty she had coming to terms with her disability. It was the deep depression and rampant anxiety that very quickly spiralled out of control that made her life – and the lives of those closest to her – so difficult.
She was unwilling to go outside – not even to sit in our lovely garden, not even to listen to the birds. She cried every day, sometimes all day. She couldn’t eat, couldn’t read a book, didn’t know what pleasure felt like. In the last year of her life, all she could do was sit silently on our settee, watching dreary daytime television.
It’s astonishing to think that just a few short years before she had been a vibrant, highly intelligent and outgoing person. She loved the garden, her allotment, loved design. In 2016 she started to feel terrible pain in her back, and by early 2017 we found out it was cancer which had spread to her spine. You don’t need to be a genius to anticipate the impact that would have on anyone’s mental health.
And yet, shamefully, she never saw a psychologist or a psychiatrist, she never had a serious mental health assessment. Yes, she was offered counselling and cognitive behavioural therapy by Macmillan Cancer Support, the hospital and our local NHS services.
But the waiting lists could be months long, and the people who delivered the therapies were often inexperienced or just not knowledgeable enough about terminal illness. She would only get a few weeks of therapy, as if somehow her problems would magically go away, only for her to go straight back on the waiting list.
Not that the sessions helped anyway. She’d leave a CBT session clutching leaflets she was supposed to go away and read – an impossible task for someone who was often too stressed to even look at a newspaper. “Go and do some gardening,” one of the sheets said: not a very sensitive thing to say to a disabled woman who loved gardening but would never be able to do that again.
She was only offered antidepressants a year or so into her illness, but steadfastly refused to take them until she was admitted to a hospice. It was her choice, of course, though in the hands of an experienced psychiatrist she might have made a different decision or had different options.
Our oncology team were amazing: they left no stone unturned when it came to trying to find ways to help Sarah’s physical symptoms. But her mental health problems remained untreated; she never had a chance of seeing the hospital’s overstretched psycho-oncologist.
I make no criticism of our dedicated and caring NHS clinical staff. They are not to blame for a health culture that has always been more interested in the physical than the psychological, though the result of that imbalance is often tragic, especially when it comes to people with terminal illness. And this deficiency is unlikely to change without more scientists and funding bodies devoting time and cash to researching new therapies to support the mental health of those with terminal illness, or evaluating existing ones. I am not aware of a single project that is looking at what’s effective when it comes to NHS provision for the psychological needs of the dying.
When she was in the final weeks of her life and when her physical symptoms were at their most pernicious, Sarah finally, strangely, found some peace, even though she couldn’t feed herself, talk, walk or sit up. Maybe it was the medication, maybe it was the caring and experienced hospice staff, but her mood did seem to lighten a little and she died peacefully, surrounded by people who loved her.
When her physical symptoms were at their worst, she paradoxically suffered the least, and that I believe is because her psychological needs were finally – at least to an extent – addressed. It’s so sad that she never experienced anything remotely like that in the three long years which preceded her demise. We can only hope that there are doctors, nurses, scientists and politicians who feel strongly enough to put time and energy into finding ways to help these most vulnerable of people, and make the suffering go away.
• Mike Addelman is a former journalist and now works as a communications professional in higher education