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What happens when nurses are afraid at their patients’ end of life?

When Dr Katrin Gerber shared her thoughts about the important topic of pain management at the end of life, it brought back many memories. My mother died in a nursing home in late 2011, and the haunting question lingered – did Mum get the pain relief she needed as she died? Doubts about this led to a long journey that became the book A Good Death: a compassionate and practical guide to prepare for the end of life, designed to raise awareness. 
 
Our culture doesn’t give much thought to questions about end of life experiences in the very elderly, so a conversation with Dr Gerber in 2020 showed the aged care setting still gets left behind when we think of palliative care. 
 
The work she describes will have an influence on the educators who teach nurses. It will encourage discussion among nursing professionals – whether in the aged care setting or elsewhere.
 
But we need to do a lot more to educate the community about improving end of life pain relief, so people understand what the law allows, giving them the opportunity to advocate more effectively for those they love, when they are dying.
 
Concerns of nurses about potential legal consequences play a role in the under-treatment of patients near the end of life, warns Dr Katrin Gerber, research fellow at Queensland University of Technology (QUT) and the National Aging Research Institute.
 
These concerns are relevant for nurses working in any care setting, but particularly for those in nursing homes.
 
“We wanted to know: Are health professionals scared of the law and what might happen if the patient dies after they have given them pain medication?” asks Katrin.
 
“But let me first tell you whether they should be scared of the law. The answer is – No.”
 
“The most relevant legal defence in such cases is the so-called doctrine of double effect. The doctrine states that if an action is carried out with good intent, for example, the intention to relieve patients’ severe pain, negative side effects like the potential risk to hasten their death are ethically accepted.
 
“That is as long as: Staff’s explicit intention is to relieve pain, not to hasten death; Pain relief is not achieved through causing the patient’s death; Proportionally, the need to relieve pain is so great that it warrants accepting the risk of hastening death.
 
“So, the doctrine provides legal protection for health professionals and is internationally recognised. That’s the theory. But what’s the practice?” she asks.
 
Katrin points out that Professor Lindy Willmott, Director of the Australian Centre for Health Research at QUT’s Faculty of Law, and her team, reviewed all Australian cases where over-medication had allegedly resulted in a patient’s death.
 
The paper that resulted ‘Providing Palliative Care at the End of Life: Should Health Professionals Fear Regulation?’ was published in 2018. (J Law Med. 2018 Oct;26(1):214-245.)
 
The team found that there were very few cases that even made it to court and if they did, it was rare for this to have legal consequences for medical staff. Their conclusion: that fears about the law were largely unfounded, and should not prevent pain relief at the end of life.
 
But regardless of this finding, nurses do have fears, and these may hold them back from giving adequate pain relief at the end of life.
 
So Professor Willmott led a study that Katrin became involved in, published this year (Willmott L, White B, Yates P, Mitchell G, Currow DC, Gerber K, Piper D. Nurses’ knowledge of law at the end of life and implications for practice: A qualitative study. Palliat Med. 2020 Apr;34(4):524-532. doi: 10.1177/0269216319897550. Epub 2020 Feb 7).
 
The team realised the problem affects nurses especially, because nurses play a critical role in the end of life care of patients across different settings: “They spend more time with patient than any other group of health professionals. So in this study, we wanted to start with them.”
 
“We interviewed 25 nurses from Queensland and New South Wales across a wide range of clinical specialties, settings, and locations. We wanted to explore nurses’ experiences with pain and symptom relief at the end of life and examine their knowledge of the law.
 
“We first wanted to know: Is inadequate symptom relief an issue at the end of life? 23 of 25 participants thought: Yes! That is 92 per cent!
 
“Almost all nurses recalled experiences when patients did not receive the relief they needed. Reports ranged in intensity, from patients with discomfort to immense agony. For example, one aged care nurse described:
 
“The family got so distressed that they stopped coming up which caused enormous grief… I would repeatedly speak as the resident’s advocate that this person needs to be reviewed… It was terrible to have to do this to somebody really in their dying throes but night after night it would be the same thing… There was no pain relief… It was heartbreaking… The stress that that caused not only to obviously the resident, clearly the family but this dreadful impact that it had on nurses.” 
 
Half of the participants believed inadequate pain and symptom relief to be a problem across the board, while the other half thought it was mainly an issue in non-palliative settings, including residential aged care. One aged care nurse described:
 
“I still think people are dying in unnecessary pain when they could be dying in comfort . . . There’s a lot of older people in nursing homes or even in a nursed-at-home community context, who are in fairly significant discomfort for a number of weeks and their last days, and it could be a lot better.”
 
Nurses expressed a lot of fear when it came to providing symptom relief at the end of life. These were often connected with fears of hastening death. Many nurses expressed legal and professional concerns. Some spoke of Coroner’s Court, civil litigation or criminal charges like murder or manslaughter. Often people also worried that any legal investigations could result in them losing their job, registration or reputation.
 
“What stood out was that for most participants, legal and professional concerns were not based on their own experiences but rather on stories heard from others and in the media. You know, those conversations in hospital corridors and staff tearooms. But their fears still influenced clinical practice in several ways. This included under-reporting of symptoms, under-administering of symptom relief and over-documenting when medication was given,” Katrin said.
 
For example, one nurse in aged care described:

“One of the patients I had been allocated to was an elderly lady . . . She seemed to be very uncomfortable . . . They had given her some pain relief but they didn’t want to give the extra morphine which she might well have benefited from because of this scenario of the side of effect of causing the last breath . . . So I asked another registered nurse to sign out this small dose of morphine . . . The dose was given and sure enough about 20 minutes later this lady died very peacefully. The other staff who didn’t particularly know me were horrified and the story went out that this new nurse has only been here for an hour and already one of her patients had died.” 
 
“Such misconceptions about pain relief at the end of life urgently need to be addressed,” says Katrin.
 
“In our study, some nurses had very limited knowledge about what was lawful practice. And even in most other responses, there was a lot of uncertainty. So while many felt they knew where “the line” is, they were unsure about the legal details.
 
“Many had received some law-related training during their degree, although the content differed considerably. And even when legal content had been covered, nurses’ training was often so long ago that they could not recall any details. Interestingly, almost all of the interviewed nurses wanted more training on the law because they believed that this would help them to feel safer and more confident in doing their job.”
 
But Katrin also believes that more education of the general public is urgently needed.
 
To help care staff learn more about the law when providing pain and symptom relief at the end of life, Lindy and her colleagues developed the ELDAC Legal Toolkit and a free online training program called End of Life Law for Clinicians.
 
These resources include detailed information that assist health professionals and aged care workers to answer legal questions that commonly arise in aged care practice as well as in other care settings.
 
The team have also created a short animation to share their findings about nurses’ legal concerns with a wider audience.
 
“In using these resources, we hope that healthcare staff will feel more confident of the support that law provides for the provision of appropriate palliative care,” Katrin said.
 
 

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