A little of what I have learnt about hope and other things – Dr Chris Lukaris

Categories: Opinion and People & Places.

So what I have I learnt in 20 years? Everything and nothing…..some things are difficult to pin down…..oft times as ephemeral as a butterflies wings…..sometimes like stones thrown at me.

Mostly a lot…..and a little…..where often the little unexpected counts for more.

I have always thought that within medicine, and particularly palliative care, people let us in to their lives at times of extremes…..obviously in part because of need but they still show us the private times…..the behind closed doors- times…..the ones that aren’t pretty or instagrammable…..we are invited in and that, for me, remains the greatest bravery and the biggest privilege.

I am ever in awe of that letting us in because often people…..when they are dying…..open themselves…..bear themselves…..stripped of the distractions.  They aren’t suddenly filled with zoom lens wisdom…..or the answers to the questions about life that, in times, we all seek.

No, I think what people show us is that…..amongst all the melee…..the heartbreak…..the tears…..the myriad disappointment…..the sheer tragedy…..they show us that they carry on living…..they show us the strength and the power of what being human truly is.  There is an indomitable spirit for the most part…..we have an innate and instinctual drive to live…..we carry on…..it illustrates the wonder and the glory that is  people…..every day in my work I am faced by the wonder and uniqueness of  people.

One thing I have learnt is that on the whole we deal with dying in the same way that we deal with our daily living…..there is no sudden capacity to cope…..no sudden super power…..if our lives were messy then more often than not…..the way that we cope with our dying is likely to be messy too…..but that is also ok and for me reassuring.  But there are always exceptions to rules and I’m glad of that too…..the individuals who deal with their death with a grace and elan that is as clear as crystal and seems so beyond what we might have expected.  We have all seen those people…..and every time I’ve wished that I might bottle its essence and add a tipple to the afternoon sherry often partaken by the other patients at our hospice.

One man spoke of it being his greatest bequest…..beyond leaving his wealth…..to leave his children with the certainty that, when our time comes, we can die with fortitude and calm…..

And what of hope…..something so often spoken about.

We all of us hope…..The dying often come to us as a last resort.  They’ve said there is nothing else to do so they sent me to you.  Imagine the absolute horror of being told there is nothing else to do.  No hope….now go away to the hospice.

I am all for being open and transparent but, sometimes, we as clinicians inadvertently seek to unburden ourselves and, in so doing, we give people our words like weights and chains.  Part of our work is helping people reframe their hope and expectations…..to re-contextualize…..we can’t cure this disease but we can alleviate its symptoms…..we’ll put all our best efforts in to that…..we can still hope for a better day…..here and now…we can still plan…..plan for the worst and hope for the best.

The hospice particularly taught me that for most people and, for most of the time, there is always something else we can do…..it might at times seem woefully inadequate and small…..but often, such little things, can be the most restorative…..acknowledging how wretched something is…..listening…..when all is said and done…..holding a hand…..just being alongside someone.

As people approach the end of their lives I often tell families around the bedside that you have done everything that you can  and now is the time of just being here.  At the very end of life the time for action has passed…..it’s the time for soft, remembered voices and gentle touches.  But hope forms such an important part of our psyche.  The relative saying please don’t tell him what he has, he’ll give up hope and he’ll die.

But for me when people come to a hospice…..I hope we bring relief…..a team in less of a speedy blur who can still at times stop and smile and share stories…..but mostly I like to think we try to reframe hope…..that it is not now the hope for a new treatment or a complete cure…..but the hope for some good times…..for some precious time…..that the hope is not a hope of cure, but a hope of feeling more settled in whatever form that will take…..the disease will do as it does but we too will do the best that we do.  Ultimately it is the hope of…..a better night’s sleep…..of a better day but, ultimately, of a good death.

I previously found friends that come to pray over their friend quite disconcerting and challenging…..particularly when they hold that they are praying for a cure.  I worried that if it didn’t work then the person who had been prayed over might feel  that they weren’t worthy of healing…..and that to me is an unbearable thought…..if I had a magic wand I’d wave it over everybody.

Instead I now like to think prayer helps to heal the spirit or the soul or the being…..in preparation for whatever is to come and whatever someone believes.  It feels good to feel cared for…..thought about…..knowing that we matter to people who care for us…..are dear to us.  That we have mattered and made a difference is an important validation.

I have a story here…..my patients and colleagues have amply shown me the place of narrative and storytelling…..not only telling the story of our lives but also the story of our being.  What do you buy someone, who is dying soon, for their birthday???

Hand cream, flowers, bed socks, a cuddly toy maybe?  It was a patient’s birthday.  On their bedside locker stood a rather wonky tree made out of drift wood.  I had previously asked them what they hoped for the future.  They had said they hoped to make December because they so lived for Christmas.  We had asked whether they wanted Christmas in July for their birthday instead.  They had thanked us but added that just wouldn’t be the same.

They did however say  that their brother had made  a Christmas tree for a birthday gift…..they  said it was the best present  ever…..albeit a touch wonky and made more from memories than anything else. The brother had gone to the favourite beaches of their childhood…..sand from the one…..the one in west wales where they made the big sand castles…..driftwood from the beach in Norfolk where they had beach combed…..and pebbles from the Jurassic Coast where as children they had always hoped to find a live dinosaur egg.  They died a couple of days later and I like to hope that the wonky tree got planted on their grave.

We all of us live in hope


Dr Chris Lukaris is a specialist palliative care doctor with a background in general practice. He now works solely with palliative medicine at St Michael’s Hospice Herefordshire, England.   https://www.st-michaels-hospice.org.uk/contact-us/



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