My first death was at the age of 25. It was August 1999, and I was a fresh-faced junior doctor, just a few weeks out of medical school. Jean was a lady in her 80s who had come in to hospital with a problem with her bowel. My team – a surgical team – initially hoped that we could fix the problem with an operation, that we would be able to make Jean better. But it became increasingly clear over a short period of time that she was deteriorating, and was unlikely to survive an operation. She was dying.
So, what did we do? We did pretty much nothing.
Every morning we would do a ward round, and we would see all of our patients. But when we got to Jean’s room we would stop, just outside the door. In the corridor, we would ask the nurse looking after Jean if there had been any problems overnight. Most often we received the reply that there had not, at which point we briskly moved on to the next patient. We doctors rarely even entered Jean’s room.
For the last ten days of Jean’s life I was one of the doctors responsible for her care. And yet, I don’t know if Jean experienced any pain or discomfort during that time. I don’t even know if she knew that she was dying. I didn’t ever ask her. It shames me to admit that the first time that my hand touched hers was when I had the grim responsibility of verifying that she was dead.
Our desertion of the dying is a relatively modern phenomenon. At the start of last century, doctors had so little up their sleeves with which to do their doctoring that much of what they did was palliate, tend to the dying.
But during the 20th century things changed. There were enormous and rapid social, economic and medical advances, and as a consequence the average human life span almost doubled. We doctors quickly became good at something that we had never been good at before: saving lives.
The trouble is, so good have we become at life-saving, and so reliant on the increasing sophistication of medical science in everything we do, that we seem to have forgotten that in every life there will come a point where it is un-saveable.
We are all going to die. And while medical science gets better and better, many aspects of death and dying have reciprocally become worse and worse. Dying has become a casualty of medicine’s triumphs: medicalised, sterilised, institutionalised and interventionalised.
And this isn’t what patients want. Research for Dying Matters shows most people with potentially short time left do not choose to prioritise longevity over everything else. They want to be symptom free, in a place of their choosing, surrounded by their loved ones, and away from sophisticated medical science.
But the trouble is to honour a patient’s preferences at the end of life, first you need to ask them what they want. And, to ask them, first you need to be open with them and their family about the fact that they are dying. And that’s the tricky bit.
Because we doctors do not like talking about death. In fact, we go out of our way to avoid using the words death and dying. We use euphemisms instead. We say things like ‘we’re going to focus on comfort care’. When what we really mean is ‘you are dying’.
It’s worth reflecting on who we are trying to protect when we avoid these words and these conversations. We may tell ourselves that we are preserving hope, but research shows that most patients with a potentially short time left to live want to know about it. This knowledge enables important conversations to take place, priorities to be discussed, and affairs to be attended to. Hope and terminal illness are not mutually exclusive.
Junior doctors still leave medical school – as I did – ill-equipped to care for the dying. Medical students receive on average 20 hours of palliative care education in a 5 year medical curriculum. We teach students anatomy, physiology, pharmacology; hearts, brains, livers; reverse, cure, fix. We focus so much on the saving of lives that we forget to tell students what to do when lives are un-saveable, producing doctors for whom death means failure.
This is a big problem because death is not a rare event for a junior doctor. There are 500,000 deaths in England each year, and half of these currently happen in hospital. And it's the junior doctors who are likely to provide the bulk of the day-to-day and night-to-night care for these patients and their families.
Three years after Jean died, I met Michaela. Michaela was 33, a bright, resourceful mother of 5, and a single parent. Early in her pregnancy with her fifth child, Michaela had been diagnosed with breast cancer. She had decided to continue with the pregnancy, even though she knew it meant delaying chemotherapy, and a potentially poorer outcome. As Michaela’s pregnancy progressed, so unfortunately did her cancer. By the time her baby daughter was born, the cancer had spread to her bones and to her liver.
I first met Michaela a few months after her daughter’s birth. By this time she was thin, frail, and exhausted. She was finding it an effort to even move from room to room within her home. Somehow she was still managing to attend appointments with her cancer specialist, who had suggested trying a new hormone tablet in the hope that it might control her cancer for a while; that it might buy her some time.
One day I was visiting Michaela at home and she said ‘Katherine, can I show you something?’. She lay back on the sofa and lifted her shirt to reveal a small lump on her abdomen. I knelt down beside her to examine it. My fingers gently traced the outline of a hard nodule under her skin, roughly the size of a 10p piece. It was unmistakeably a secondary from her cancer, and a sign that the new tablets were having little beneficial effect. I glanced up at her, and as I did so I noticed several other, smaller lumps on her neck and arms.
The physical examination of a patient can fulfil several purposes. For me, physical examination can provide a pause, time to gather my thoughts before approaching a difficult conversation. On this occasion, however, Michaela broke the silence and in doing so made my job much easier.
‘Has the cancer spread again, Katherine?’ she asked.
‘Yes, I think it has.’
‘Does this mean the treatment isn’t working, Katherine?’
‘Yes, it does.’
There was a slight pause. ‘Do you think I’m dying, Katherine?’
‘Yes, I do.’
Then it was my turn to ask the questions. Still kneeling by her side, I took her hand in mine.
‘What’s are your priorities?’
She said she was exhausted; she just wanted to rest.
‘What are your fears?’
‘What are your hopes?’
The children will be well supported.
Michaela moved into her local hospice two days later, and from there she sorted out her affairs. She signed the lease of her house over to her ex partner so that her children at least would not lose their home. She made memory boxes, wrote letters. And she rested. Her four older children visited her most days, but the baby stayed away. She had already said goodbye.
Michaela died peacefully in the hospice two weeks later.
Michaela’s death, at the age of 33, was premature by anyone’s standards. But she had achieved the goals she set for herself, and in this way her life was more complete than many.
Jean died in hospital. In fact I believe that she was comfortable, and she had her family around her. It wasn’t a bad death. And yet I wish that things had been different. I wish that I had left the morning ward round, that I had gone into Jean’s room, sat down, and held her hand. And I wish I’d asked her: what is important to you?
A good death is possible, and there is more than one way to die well. But there are minimum requirements. These are that we recognise the fact that our patient is likely to die, that we communicate this with them openly and honestly, and that we sensitively explore their priorities, their hopes, and their fears.
Death isn’t failure. But avoiding these conversations is.
Dr Katherine Sleeman is a Clinical Lecturer in Palliative Medicine at King's College LondonReuse content