Death is inevitable. But for many it remains the last taboo. Modern medicine means we can prolong life like never before. Assisted dying legislation currently before Parliament may mean – in special circumstances – we can control death like never before.
Health Central’s Death series will explore the health aspects of death & dying in New Zealand. This is the first of eight in-depth feature and opinion articles.
We are all going to die. But how much do we know about it?
We’ve seen hundreds, if not thousands, of people die on screen – often violently with a bullet, or gently and quietly with muted lights and soft music. But death, like birth, can be slower, noisier and much more unpredictable than is portrayed by Hollywood filmmakers.
Our forebears had little choice but to care for their dying family members in their final days and hours, but in the 20th century death became something considered best left to the clinical experts, which meant far fewer of us than before were familiar with the actual dying process.
Social change, however, has meant that death in the 21st century, like birth, is no longer a mysterious ‘rite of passage’ happening behind closed doors or pulled curtains. In this final life step, family and friends are welcomed as active carers or bedside supporters – sometimes 24/7.
But unlike parents offered antenatal classes leading up to their first births, many of us come ill-prepared to our first death. Our initiation may be gentle, with the person sleepily slipping from life, or it may be confusing or disturbing. Either way it will be a profound experience that will help shape our attitudes to death, dying and, inevitably, euthanasia.
So what can we expect when someone dies? Health Central talks to palliative care specialist Dr Brian Ensor about the symptoms of dying.
A diagnosis of dying
What can be surprising is that most of us will die in much the same way.
Unless we die suddenly – say, in a car accident or from a heart attack – the last hours of life are similar for everybody, whether we die of cancer, diabetes, lung failure or frail old age. The body’s organs will start to fail and shut down until there is multiple-organ exhaustion, our heart stops, our brain follows and we die.
Ensor is a clinical advisor to Hospice New Zealand and until recently was director of palliative care at Mary Potter Hospice. In his mind, dying comes in two stages.
The first stage is the big picture – the person’s terminal disease, co-morbidities or frailties begin snowballing beyond being able to be controlled and a clinical consensus is reached that the person is dying. It is time for the clinical team to meet with the family and shift the focus from intervention to comfort for the final week or weeks of life.
The second stage is when the signs emerge that death is imminent in a matter of hours or maybe days. There may have been changes in circulation, skin tone and colour, breathing or consciousness, and the symptoms of dying begin.
Death is as individual as the person who is dying, so the number, timing and intensity of symptoms people experience will vary, but many people will have one symptom or more.
Pain is probably the symptom we most fear when faced with the death of a loved one or ourselves. But in the final days or hours of life, Ensor says, pain probably comes a distant fourth in the concerns of the dying person or the family at their bedside. And while some of these three other dying symptoms can be distressing to see or hear, he says they are usually not as distressing to the dying person as their body and brain slowly shuts down.
Breathlessness (dyspnoea or ‘air hunger’)
One of the symptoms that can cause the greatest struggle for the dying person and concern for families is changes in breathing.
When a person begins to die, a number of reflexes or symptoms can kick-in as consciousness lowers, says Ensor, and breathing changes are among them.
“Breathing, I think, tops the list of symptoms that people struggle with at the end of life,” he says.
“A number of breathing patterns can emerge – none of which look like ‘normal’ breathing.
It is all perceived as struggling to breathe, but it is harder to watch than it is for the patient who is unconscious.”
The use of morphine or another opioid is the most common medication treatment for this symptom, along with careful positioning of the person, a gentle flow of air across their face and trying to reduce the patient’s anxiety with relaxation techniques like massaging their feet if they are happy to be touched, their choice of relaxing music, reading aloud to them and health professionals maintaining a calm and caring approach.
One breathing pattern that can emerge is cyclical breathing (also known as Cheyne-Stokes breathing) when the ‘thermostat’ in the brain measuring oxygen and CO2 levels in the body starts to “run rough”, says Ensor.
So the person’s breathing may stop for a while – for a worrying 30 seconds or so – and their oxygen levels reduce before the breathing instinct kicks in again – often with fast, puffing breaths as they catch-up. Ensor says this reflex needs to be explained to families, who can obviously find it distressing to witness the person stop breathing and then appear to struggle to breathe.
A reflex that can kick in for people dying of renal failure is breathing very quickly to get rid of the acid resulting from the shutdown of the kidneys. “Another reflex,” says Ensor, “can be a grunting or groaning sound on breathing out, which helps breathing – like pursed lip breathing does for conscious people.”
But again, Ensor says, studies show that what people at the bedside can find difficult to watch or hear might not be as uncomfortable to the dying person. If breathing is distressing for the dying person – they are showing signs like grimacing or muscles tensing tight when taking a breath – the response is to give morphine or another opioid that suppresses respiration and ‘relaxes’ the signals from the brain in response to how much oxygen or CO2 is in the body.
Terminal/excessive respiratory secretions (the ‘death rattle’)
From the days when most people died at home in their own beds, the ‘death rattle’ was the symptom that signalled death was close.
The ‘rattle’ is caused by the dying person no longer being able to swallow or clear secretions, like saliva, from their mouth and airway – so the secretions build-up and when air moves over the pooled secretions in the top of the throat and lung passage ways they vibrate. The resulting sound has been described as noisy, rattling, gurgling and unpleasant.
Ensor says again while the ‘death rattle’ is unpleasant to listen to – he gives the analogy of breathing through a straw at the end of a milkshake – the air is still coming and going very freely and it is usually not a struggle for the dying person. He says they know this because conscious people tell nurses and doctors that it doesn’t worry them and when people are unconscious there is no reflex to cough. Care of a person with a death rattle includes considering the impact on the family who may fear the person is choking or drowning, repositioning the person and regular mouth and lip care.
“A death rattle from normal secretions, like saliva, doesn’t bother anybody, but a death rattle in terms of pneumonia and other secretions is another scenario,” says Ensor.
The second scenario – resulting in a deep rattle and a person trying to cough – is less common and the clinical response may be sedation to suppress the breathing, medication to dry up the secretions, or, on occasion, treating more vigorously with antibiotics or steroids to control the secretion causing the symptom.
About half of the people cared for by hospice services will have a mention of secretions or a ‘death rattle’ in their notes, says Ensor. And studies have shown that about half of the relatives and friends who witness a ‘rattle’ – as well as hospital staff – find the noise distressing.
Restlessness, agitation and delirium
“Do not go gentle into that good night… Rage, rage against the dying of the light.” (Dylan Thomas)
Families hoping for their loved one to drift gently and quietly from life can instead find them fighting to climb out of bed, agitated, twitching and even angry.
Terminal restlessness or terminal agitation can be the most disturbing of the symptoms of dying for people at the bedside, with it sometimes being called terminal anguish or terminal distress.
Ensor says restlessness can have multiple causes – with usually no one single cause – but is often perceived by anxious family and friends as their loved one being in pain.
Pain is one of the possible causes of restlessness that clinicians try to exclude and, if the person is uncomfortable at rest, will look to increase their pain relief, but with caution as sometimes pain relief, combined with anti-nausea or other medications, can make restlessness worse, with a side effect of morphine or fentanyl being delirium.
Delirium is a befuddling of the brain signals that can cause confused thinking, lethargy, hallucinations as well as restlessness, irritability and agitation in the dying person.
But a more simple cause of restlessness can be a full bladder. “If somebody is semi-conscious and they start becoming restless, groaning and trying to get out of bed – and people aren’t sure why – you have to make sure their bladder is okay,” says Ensor.
Sometimes restlessness can be caused by the discomfort of a wrinkled sheet, an uncomfortable position, or too much noise and light in the room. Good nursing care, familiar voices and belongings, and relaxation techniques like aromatherapy, massage and quiet familiar music might help. Emotional, spiritual or religious distress sometimes also surface in the final hours and spiritual or religious support may provide solace for the person and their family.
But the causes of restlessness and agitation can be numerous and irreversible as the body shuts down. If relieving the fixable potential causes doesn’t help, the next step is often medication – most commonly the sedative midazolam. However, if a person is conscious, the anti-psychotic haloperidol may be considered to try to reduce the confusion and improve clarity.
In the final stage, as we know, the heart stops, then the brain, and the person dies. The first death we encounter may be someone slipping out of the world in their sleep or unconscious, sedated with pain relief and sedatives. They may go quietly – they may go noisily. The death may be anticipated and at a place of their choice. Or it may be unanticipated and fought against under bright lights, with machines beeping and strangers coming and going. The symptoms of dying may be well managed and well explained. Or they may not.
Whatever our first experience is of dying is, it will be profound and shape our attitude to what is a ‘good death’.