UNCONTROLLABLE SYMPTOMS
Nausea and vomiting
Nausea and vomiting are common symptoms of terminal illnesses. Studies suggest around 50% to 60% of people with advanced cancer suffer from nausea and/or vomiting, with people under 65 and women more likely to be affected.
Nausea and vomiting are also common side-effects of pain relief treatment. Approximately one third of people who are given opioids experience nausea, though this side-effect has been shown to diminish over time. In one study, 22% of patients withdrew from opioids because of the severity of side-effects including nausea. Nausea and vomiting can be treated with antiemetics, but, as one study in a hospice found, even when guidelines are followed symptoms can persist in some people.
I think pain is not necessarily the worst symptom you can have. I think nausea is often worse and is often much harder to deal with. A lady I’m treating has nausea and we’ve been through the medication that we would use for nausea and it is not helping. Palliative care consultant
Bowel-related symptoms
Constipation can be associated with abdominal and rectal pain, abdominal distension, anorexia, nausea and vomiting, urinary retention, and confusion. In 2008, a pan-European working group of palliative care professionals stated that constipation ‘is one of the most common problems in patients receiving palliative care and can cause extreme suffering and discomfort.’ The working group recognised that constipation can significantly reduce quality of life and has been found to rival or exceed pain in terms of the severity of distress it causes to dying people.
Similar to nausea and vomiting, constipation is a common side-effect of pain relief treatment. A review of existing evidence observed that constipation ‘occurs in almost every patient taking opioids and does not lessen with continued use.
The treatments available for constipation include laxatives, suppositories and enemas and these are widely regarded as effective. However, there is a consensus that more research on the treatment of constipation is needed.
Treatment can result in diarrhoea, incontinence and the need for rectal care, all of which can have a negative impact on a dying person’s sense of dignity. Therefore, the benefits of treatment have to be balanced against its side-effects.
She had bowel cancer and she basically wanted to be at home so she could just die looking out on her shed and garden with the family around her.
Faecal incontinence is a common symptom of some cancers towards the end of life. It is also a side-effect of treatment for cancers in the abdominal area. One study found nearly half of patients receiving treatment for rectal cancer went on to suffer from incontinence. These side-effects have been shown to harm people’s physical, psychological, social, and emotional well-being. However, this does not always lead to an overall reduction in quality of life.
In 2014, clinical ethicist Ann Munro told The Guardian that there are symptoms of dying that doctors can do little to alleviate. One woman in her care was passing faeces through her vagina: ‘She said to me, “I don’t want to be here anymore. I want this to stop. What can you do about it?” She found it humiliating and grim and she was going to die.’
Passing faeces through the vagina occurs when a person has a rectovaginal fistula. The most common cause of these fistulas is childbirth, but they can occur as a result of cancers and radiotherapy treatment.
Munro also said ovarian and bowel cancers can often lead to people vomiting their faeces. Scottish palliative care guidelines acknowledge faecal vomiting as a potential symptom of bowel obstruction.
I have seen people who have got vomiting towards the end of life because they have partial bowel obstruction. They are able to take some sips of water. They are able to take a cup of tea, but an hour later it comes back accompanied by faeces. They are actually vomiting up their faeces. Palliative care consultant
As part of a public conversation about legalising assisted dying in Australia, Angelique Flowers contacted the then Prime Minister Kevin Rudd to ask why he could not change the law to allow her a ‘peaceful death.’ Angelique was 30 when she was diagnosed with colon cancer and given just months to live. Following her death, her brother Damian said that in the last hour of her life ‘he held a bowl under his sister’s chin as she vomited faecal matter'.
Terminal haemorrhages
Terminal haemorrhages, also known as catastrophic haemorrhages, are a symptom of some cancers, most commonly in the head and neck, where tumours erode major blood vessels resulting in extensive and rapid blood loss that leads to death.
Terminal haemorrhages have been described as ‘rare but devastating’ events, primarily because treatment options are limited. When a terminal haemorrhage occurs, sedatives are administered in an effort to reduce distress for the dying person. But research suggests that this practice is largely ineffective because the person is likely to die before the effect of the sedative is felt. It has been proposed that the primary benefit of sedation in these circumstances may be the reassurance it offers to dying people who are at risk of a terminal haemorrhage, even if the palliative care team has doubts over the benefits sedation would offer should a haemorrhage occur.
Guidance for the management of terminal haemorrhages suggests more practical measures to reduce distress for dying people, as well as loved ones and healthcare professionals who are present, such as the use of dark sheets and towels to camouflage the extent of the blood loss. The reported incidence of terminal haemorrhages in patients with advanced cancer is between 3% and 12%. However, the evidence base for these estimates is unreliable, focussing on small-scale studies and expert opinion.
We’ve had people who have bled out suddenly, and you whack them with midazolam and you hope that they don’t know what’s going on. But then they pass away, so you can’t ever ask them. Palliative care nurse
Malignant fungating wounds
Malignant fungating wounds develop when cancer breaks through the skin. These wounds occur more frequently in breast, head and neck cancers, but can occur in other circumstances. Symptoms include an unpleasant smell, pain, bleeding, itching and leakage. Fungating wounds can sometimes be treated with radiotherapy and chemotherapy, but it is unlikely that they will ever completely heal.
One lady had tumours in her abdomen, which were starting to eat their way out of her, actually coming out of her abdomen.The smell was horrific. It was basically dying flesh and she was still with us and her family’s memory of her was her decomposing while she was still alive. And there was nothing we could do to stop it. She went on for about a week and a half like this, literally decomposing from the inside out. She was unconscious and you just have to hope that she wasn’t aware of too much. You just wanted to do something, even if it was just getting rid of the smell for the family, but you couldn’t because it was everywhere. Palliative care nurse
I remember I did a night shift a couple of months ago and we had this woman with the most dreadful wound. I mean it was just horrible. She had a cancer of the vagina and it was fungating. She was perfectly peaceful except when we had to turn her. And we had to turn her. You have to. You can’t just leave people. If somebody needs cleaning up, you’ve got to clean them up. She didn’t have enough sedation. We gave the maximum that the doctors would prescribe. She died fairly soon after, but she was in agony while we were turning her. Palliative care nurse
I have seen people with open wounds. People with breast cancer where the tumour is eating through the chest wall. They are prisoners in a hospice or a hospital ward. Palliative care consultant
Some claim stopping eating and drinking is a form of suicide and believe a healthcare professional who provides medical support to someone to do it is in fact assisting them in that act.
There’s a very thin dividing line between removing treatment and assisted dying. The intention is the same. You’re responding to a request of somebody who’s asked for it. The fact it’s possible to do that says to me, ‘Why don’t we just have assisted dying?’ Palliative care nurse
2-3 WEEKS
It took 22 days for her to die. 11 days pretty much compos mentis and then 11 days where they stepped up the medication and she was with it but not with it, in the worst of both worlds. BEREAVED SON
Where I work there are some who are very much against palliative sedation. But, if somebody says, and they quite often do, ‘If it gets too uncomfortable and too horrible, I just want to be asleep all the time’, I would say the vast majority of nurses would be very happy with that, and I think in practice a lot of what we do does basically sedate people. Palliative care nurse
We wouldn’t jump straight to sedating someone and we wouldn’t aim to sedate someone to unconsciousness, unless that is the only way in which we could treat their symptoms. But of course the side-effect of the medication is that the person might be drowsier or they might be sleepier, and so they might be less conscious as a result. I am very clear that I am not going to be aiming to make someone unconscious , but that is something that might happen. Palliative care consultant
I’ve got one patient at the moment. She is dying. She asked me very specifically yesterday if we could do anything to speed up her death, and if she could be drowsier. Of course we can’t do anything to speed up someone’s death, but we will do everything we can to make them comfortable and it may be that that will lead to more drowsiness. I don’t think the line is that fine. I am not saying that the medications we use are inherently, completely safe. I am just saying that the way in which they are used and increased when someone has a very limited prognosis isn’t very likely at all to hasten their death unintentionally. Palliative care consultant
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