Adequate pain and symptom relief is a core value of healthcare, medicine and nursing, which is particularly important at the end of life. Yet, some dying patients do not have their symptoms sufficiently controlled, which can cause severe distress to patients, families and health professionals. Reasons for inadequate symptom management at the end of life are complex and include difficulties in recognising signs of dying, identifying symptoms, and accessing care services. Another barrier to receiving optimal pain and symptom management relates to fears regarding legal or ethical risks. This can arise where health care professionals want to relieve a patient’s symptoms but are concerned about the effects that the necessary medication could have on the patient.

In a recent article published in Palliative Medicine with colleagues from the University of Queensland, the University of Technology Sydney and the University of New England, we spoke to nurses from different clinical backgrounds and settings about their concerns when providing pain and symptom relief to patients near the end of life. [1] We encountered recurrent reports from almost all interviewed nurses that symptom management was seen as a noticeable issue at the end of life, particularly in non-palliative settings like residential aged care. Nurses frequently discussed fears that providing symptom relief might hasten patients’ death and lead to legal or professional repercussions. While some spoke of coroner’s court, civil litigation or criminal charges like murder or manslaughter, nurses also worried that any legal investigation could result in them losing their job, registration or reputation.

What stood out was that for most nurses, legal and professional concerns were not based on their own experiences but rather on stories they had heard from others and in the media. Yet, their fears still influenced clinical practice in important ways. This included under-reporting of symptoms, under-administering of symptom relief and over-documenting when medication was given.

Particularly concerning was that less than half of the interviewed nurses knew the law in this area. This is significant because the law is clear in its protection and support of appropriate management of symptoms at the end of life. The law draws on the ethical doctrine of double effect. [2]

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, as long as:

1. It is staff’s explicit intention to relieve pain, not to hasten death;
2. Pain relief is not achieved through causing the patient’s death;
3. Proportionally, the need to relieve pain is so great that it warrants accepting the risk of hastening death.

Other research we have done also confirms that fears of legal risks for providing palliative care are largely unfounded. A recent review of publicly available cases in Australia demonstrated there has been very little judicial scrutiny even of cases where over-medication is alleged to have resulted in a patient's death. [3] We have suggested that clinicians should not fear legal sanctions for using opioids appropriately at the end of life. Indeed we argue that the law can be an ally in good end of life care through its support for administration of appropriate palliative care. [4]

To help care staff learn more about the law when providing pain and symptom relief at the end of life, we have developed the ELDAC Legal Toolkit and a free online training program called End of Life Law for Clinicians. [5,6] 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. We have also created a short animation to share our findings about nurses’ legal concerns with a wider audience. [7] 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.

References

1. 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.
2. Queensland University of Technology (QUT), End of Life Law in Australia. Palliative Medication [Internet]. Brisbane (QLD): QUT End of Life Law in Australia; 2020 [updated 2020 Apr 10; cited 2020 Jun 24].
3. Willmott L, White B, Piper D, Yates P, Mitchell G, Currow D. Providing Palliative Care at the End of Life: Should Health Professionals Fear Regulation? J Law Med. 2018 Oct;26(1):214-245.
4. Hunt RW. A perfect storm: fear of litigation for end of life care. Med J Aust. 2020 Feb;212(3):140-140.e1. doi: 10.5694/mja2.50465. Epub 2019 Dec 24.
5. End of Life Directions for Aged Care (ELDAC). Legal Toolkit [Internet]. Brisbane (QLD); ELDAC; 2020 [updated 2020 Mar 02; cited 2020 Jun 24]. 
6. End of Life Law for Clinicians (ELLC). Palliative Care Education and Training Collaborative: End of Life Law for Clinicians [Internet]. Brisbane (QLD): ELLC; 2020 [cited 2020 Jun 24].
7. White B, Willmott L, Gerber K. Addressing nurses' legal fears in end-of-life care [Digital or visual products]. Brisbane (QLD): Queensland University of Technology (QUT); 2020. Video: 2.55min

Dr Katrin Gerber, Australian Centre for Health Law Research, Queensland University of Technology & Melbourne Ageing Research Collaboration, National Ageing Research Institute

Professor Lindy Willmott, Australian Centre for Health Law Research, Queensland University of Technology

Professor Ben White, Australian Centre for Health Law Research, Queensland University of Technology

Distinguished Professor Patsy Yates, School of Nursing, Queensland University of Technology

This blog is part of series of blogs commissioned by ELDAC to support aged care health professionals and care providers in providing end of life care. You can find more information on the ELDAC website. Additionally, the ELDAC Helpline is available 9am – 5pm, Monday – Friday (CST) on 1800 870 155 or email at ELDAC.Helpline@flinders.edu.au