Understanding ethics in end-of-life care

Much of the daily work of nurses in end-of-life care could perhaps be thought of as overlaid with ethical issues. This may be in relation to concerns that are raised, or with requests or decisions that are made. This section provides information and resources on some of the ethical issues that nurses can encounter in end-of-life care.

There are ethical considerations in the following contexts:

Assisted suicide is to deliberately help or encourage someone to end their life. (Euthanasia is the act of deliberately ending someone’s life to relieve their suffering).


Nurses working in palliative care are sometimes asked to help end someone’s life: 'I can’t go on like this, can you give me something to end it all?' Patient assisted suicide has been described as 'the provision of drugs and/or advice so that a patient could take his or her own life'. [1] This is illegal in Australia. [2]


It is important to acknowledge that some patients are expressing a desire to die rather than requesting direct action. These requests to die can be made when someone is depressed or emotionally distressed. For example they may feel that they are a burden, or perhaps are suffering intolerable physical or emotional symptoms. At other times decisions have been made carefully, such as deciding that life is intolerable.


One study of terminally ill patients in Canada [1] found that the desire for death was transitory (dependent upon symptoms at the time). This indicated that potentially treatable symptoms could in fact, drive people to suicide. Further research, on who is choosing an assisted death and why, is needed. [3]

If someone is talking about taking their own life, whether or not they are asking for help to do it, this situation needs to be addressed urgently. Actively listening to their concerns and fears can help ascertain why they have come to make this request. Talking to others within the health care team whenever possible provides a multidisciplinary approach to a situation that shouldn’t rest with one practitioner.


References

  1. Wilson KG, Chochinov HM, McPherson CJ, Skirko MG, Allard P, Chary S, et al. Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychol. 2007 May;26(3):314-23.
  2. White B, Willmott L. How should Australia regulate voluntary euthanasia and assisted suicide? Weston, ACT; Australia 21 Limited: 2012 Nov.
  3. Steck N, Egger M, Maessen M, Reisch T, Zwahlen M. Euthanasia and assisted suicide in selected European countries and US states: systematic literature review. Med Care. 2013 Oct;51(10):938-44.

Euthanasia is a deliberate act or omission, undertaken with the intention of ending a person’s life. Euthanasia is illegal in some but not all states of Australia. End of Life Law in Australia has more details on this for each state and territory eg. Victoria legislated for Voluntary Assisted Dying (VAD) of 2019.


The role of nursing in euthanasia varies across and within countries but a review of ethical considerations found the literature to be dominated by articles from the United States and rarely focused on nurses. A finding that was at odds with the acknowledgment that nurses have an important role in dealing with preliminary requests for euthanasia. Euthanasia has been an ever present debate in palliative care. The last two decades have seen a rise in active pro-euthanasia advocates pushing for legislation across the world. However, palliative care is aimed at supporting people at the end of their life, and this never involves an intention to end a patient's life.


A request for euthanasia sometimes comes from family members. Nurses may be asked by families to give their loved one something to 'end it all'. This may be when the person is unconscious or in the final days of life, and appears uncomfortable, as if they are suffering. Families will sometimes draw comparisons with the humane treatment of animals who are considered to have intolerable suffering.


Any request for euthanasia needs to be addressed, regardless of the source or nature. Actively listening to the concerns and fears of the person can help ascertain why they have come to make this request. Talking to others within the health care team, whenever possible, also provides a multidisciplinary approach to a situation that shouldn’t rest with one practitioner.


You can learn more from State and Territory government websites on this for:

Withdrawal of treatment or the decision not to initiate curative treatments is complex and often challenging for health professionals. Euthanasia and assisted suicide are different from withholding or withdrawing life-sustaining treatment in accordance with good medical practice by a medical practitioner. When treatment is withheld or withdrawn in these circumstances, and a patient subsequently dies, the law classifies the cause of death as the patient’s underlying condition and not the actions of others'. [1]


Decision making at the end of life can often involve very difficult and emotional decisions about whether to start or stop a treatment. For example, whether or not to start mechanical ventilation or whether to stop PEG feeding, or use of dialysis. These decisions need to consider whether something is burdensome for the patient - in other words, quality of life.


Nurses are often involved in the debates surrounding the withholding or withdrawal of treatment and there are often conflicting views in decision making. Ethical, cultural, religious and moral factors are enmeshed in these decisions and there are also sometimes worries about legal implications. [2] One study in an ICU setting found that central to the theme of withdrawing treatment was working with the family; consistent communication is a key factor. [3] Queensland Health’s guidelines for decision-making about withholding and withdrawing life-sustaining measures from adult patients emphasise that legal follows clinical considerations. Good clinical care and the person’s best interests should come first. See CareSearch Clinical Evidence on Care of the Dying Person for more.


References

  1. NSW Health. Guidelines for end-of-life care and decision-making. North Sydney: NSW Department of Health; 2005 Mar.
  2. Cochrane TI. Withdrawing and withholding life-sustaining treatment. Handb Clin Neurol. 2013;118:147-53.
  3. Vanderspank-Wright B, Fothergill-Bourbonnais F, Brajtman S, Gagnon P. Caring for patients and families at end of life: the experiences of nurses during withdrawal of life-sustaining treatment. Dynamics. 2011 Winter;22(4):31-5.

Providing food and fluids has great meaning to many people as they often relate the provision of food and fluids to comfort and nourishment, and to the giving and preserving of life. A person’s cultural background can have great impact on their values and beliefs regarding this topic and should never be underestimated.


Providing food and fluids for as long as someone wants them and can safely take them is important. It is when the person can no longer take them that the complexities of ethical decision making arise. This can be an emotive issue for nurses as well as for families.


Some family members insist on trying to continue to feed their loved one even when it is no longer safe to do so. They may consider not doing this as a failure to care. They may also insist on parenteral fluids or a feeding tube once someone can no longer eat or drink. In these circumstances it is important to talk to them about comfort measures, such as regular mouth care, wetting the patient's lips and using lip balms. If the family are so distressed at the thought of dehydration, a small amount of subcutaneous fluid may be an acceptable compromise.


Other health professionals are a good resource. For example, if unsure whether someone can still safely swallow food and fluids, referral to a speech therapist would be helpful.


Some patients themselves choose to specifically request not to receive artificial nutrition or hydration at the end of their life, such as in an advance directive. Some may make this choice at the time, with or without the agreement of their relatives.


Artificial nutrition and hydration are seen by some as interventions in what should be a natural process. This can be associated with significant risks and burdens. Even if it is found to be easy to initiate there can be difficulties when the time comes to consider their withdrawal. All discussions should take place early with families, ensuring they are aware of burdens and benefits of continuing this therapy. A study of nurses in Switzerland providing long-term care reported that less than two per cent of residents voluntarily stopped eating, and was more likely among older people. [1] This is comparable to reports from other developed countries and was regarded as a natural and dignified death. See CareSearch Clinical Evidence section on Nutritional Support for more information.


Reference

  1. Stängle S, Schnepp W, Büche D, Fringer A. Long-term care nurses' attitudes and the incidence of voluntary stopping of eating and drinking: A cross-sectional study. J Adv Nurs. 2020 Feb;76(2):526-534. doi: 10.1111/jan.14249. Epub 2019 Nov 29.

Palliative sedation is regarded as the use of sedation until death in the terminal phase, for symptoms that are resistant to other treatment measures. [1]


The decision to prescribe and/or administer palliative sedation should not be taken lightly, and is considered to be a last resort once all other measures have been exhausted. It is considered appropriate for only a small group of patients and used, for example, for intractable (refractory or impossible to control) symptoms. Establishing that a symptom is intractable is the first step in this process, with the associated collaborative decision making of vital importance.


Making this decision may create debate and contention within the multidisciplinary team. This mainly lies with the intention and depth of sedation, and in palliative sedation corresponding with withdrawal of other treatment. One example of this is whether the patient or family are making the request. The European Association of Palliative Care has produced a widely adopted framework on palliative sedation to help guide practice. [2]


It is important to emphasise that palliative sedation does not have the intent to directly hasten or end life, although some argue that the lines between palliative sedation and euthanasia can be blurred in cases where sedation is introduced too early or if medication doses are disproportionately high. [3] Another study found a lack of consensus in defining ‘existential suffering’ due to its subjective nature and therefore difficulty in deciding on an appropriate treatment course. [4]


If palliative sedation is a consideration then seek advice and support where possible from a specialist palliative care service.


References

  1. Bruinsma S, Rietjens J, van der Heide A. Palliative sedation: a focus group study on the experiences of relatives. J Palliat Med. 2013 Apr;16(4):349-55. Epub 2013 Feb 19.
  2. Cohen-Mansfield J, Skornick-Bouchbinder M, Brill S. Trajectories of End of Life: A Systematic Review. J Gerontol B Psychol Sci Soc Sci. 2018 Apr 16;73(4):564-572. doi: 10.1093/geronb/gbx093.
  3. Anquinet L, Raus K, Sterckx S, Smets T, Deliens L, Rietjens JA. Similarities and differences between continuous sedation until death and euthanasia - professional caregivers' attitudes and experiences: a focus group study. Palliat Med. 2013 Jun;27(6):553-61. Epub 2012 Oct 26.
  4. Bruce A, Boston P. Relieving existential suffering through palliative sedation: discussion of an uneasy practice. J Adv Nurs. 2011 Dec;67(12):2732-40. Epub 2011 Jun 1.

There has been much discussion over the years about resuscitation in the setting of hospice and palliative care. Resuscitation should be part of broader discussions around advance care planning with patients and their families. These discussions should be facilitated as early as possible, although in reality they continue to occur late in the illness trajectory, and sometimes are only raised when death is imminent. One study highlighted the fact that patients are not always aware of their prognosis; therefore, if resuscitation is discussed early in the course of their illness, decision-making around resuscitation will improve. [1] Another study found that the provision of written information about resuscitation was acceptable to patients but needed to be accompanied by a discussion regarding prognosis. [2]


These discussions (and subsequent decisions regarding ‘to resuscitate’ or ‘not to resuscitate’) should always be clearly documented to avoid confusion as the need to act on the decision arises. Documentation includes not only case notes or community notes, but also Advance Directives.


This situation will sometimes result in nurses not knowing whether to undertake resuscitation attempts or not. This can be especially difficult if for example, someone is imminently dying and their family are advocating for resuscitation (whether documentation is in place or not). Communication with patients and their families around decision making needs to take place early, so that these issues can be raised and conflicts potentially avoided later.


References

  1. Heyland DK, Frank C, Groll D, Pichora D, Dodek P, Rocker G, et al. Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalized patients and family members. Chest. 2006 Aug;130(2):419-28.
  2. Johnson HM, Nelson A. The acceptability of an information leaflet explaining cardiopulmonary resuscitation policy in the hospice setting: a qualitative study exploring patients' views. Palliat Med. 2008 Jul;22(5):647-52.

Nurses are sometimes asked to withhold the truth from a patient. This is referred to as collusion and can easily create a scenario of secrecy and mistrust. These requests are often made in relation to disclosing a life-limiting illness such as cancer, or even imminent death, and can be made by a family member or by the patient themselves.


In western society, it was common in the past to exclude a patient from the truth. But the trend has moved away from this in recent years and patient autonomy or the right to make their own decisions is now recognised and upheld.


To make decisions patients need to have enough information. However, patients do not always fully understand what they have been told, or they may not have been told. [1] Decisions are best made without undue influence, and the person making the decision should also be deemed capable of doing so.


Patient choice and autonomy are considered key in palliative care. One review of autonomy in the context of serious illness has defined a structural model comprising two key domains ‘Being normal’ and ‘Taking charge’. [2] The first of these might be viewed as continued ‘living while dying’. Taking charge encompasses being treated with dignity as a whole person and contributing to decision-making. Part of the nurse’s role, wherever possible, is to advocate for a competent patient’s right to decide their own course of action, whether it is something that the nurse feels is appropriate or not. Decision making is complex and includes cultural and social aspects that are not always acknowledged. [3]


It may be difficult to stand by when a patient decides (sometimes against advice) to take a course of action that you might consider ‘acceptable’ or ‘appropriate’. However, if the patient is capable of making such a decision and is well informed of the consequences of their actions, they must be allowed to exercise their autonomy to do so.


Palliative care patients are often vulnerable and may be more easily persuaded to make choices that they would not normally make, such as accepting further treatment that they don’t really want. They may also continue to request treatment that they have been told is futile and may not help. Further examination of their understanding of the situation and their goals is required to help support them in their decision making.


However in many cultures, it may still be common practice to keep distressing news from patients. Illness can be viewed as a family concern and autonomy may not be recognised. [4] In these instances it is important to understand and respect the cultural beliefs and collaborate with an ‘elder’ or significant person, while keeping the patients interests foremost. The ethical principles of beneficence (to do good) and non-maleficence (to do no harm) would apply.


The role of the nurse in this context is a difficult one. The majority of patients prefer to be told the truth about what is happening to them. Many will know or guess the truth and also realise that this is being kept from them. Others will not want to know, and this is their choice.


The nurse patient relationship will suffer if the patient feels that they are being lied to or kept from knowing the truth. Culturally acceptable communication is usually the best policy, and discussions within the multidisciplinary team can help to clarify what is happening, why it is happening and whether it is in the best interests of the patient.


A useful framework for nurses to avoid potentially distressing disclosures is to ask the patient: 'What do you know about your illness and what is happening at the moment?' and equally important: 'How much would you like to know?'.


References

  1. Anyfantakis D, Symvoulakis EK. Medical decision and patient's preference: 'much ethics' and more trust always needed. Int J Med Sci. 2011;8(4):351-2. Epub 2011 May 31.
  2. Houska A, Loučka M. Patients' Autonomy at the End of Life: A Critical Review. J Pain Symptom Manage. 2019 Apr;57(4):835-845. doi: 10.1016/j.jpainsymman.2018.12.339. Epub 2019 Jan 3.
  3. Wilson F, Ingleton C, Gott M, Gardiner C. Autonomy and choice in palliative care: time for a new model? J Adv Nurs. 2014 May;70(5):1020-9. Epub 2013 Oct 10.
  4. de Pentheny O'Kelly C, Urch C, Brown EA. The impact of culture and religion on truth telling at the end of life. Nephrol Dial Transplant. 2011 Dec;26(12):3838-42.

Palliative care research is helping to identify best practice for the care of the dying. Palliative care patients have long been considered a vulnerable population, and for many years it was considered unethical to conduct research with those at the end of life. [1]


In more recent years it has been reasoned that facilitating participation in research has allowed these patients to continue to have a ‘voice’, and to contribute to the care of those that will follow. However, not everyone takes this view. Some family members feel that they should protect patients from distress or further burden by not allowing them to participate in research. Some health professionals hesitate to propose them as a potential research subject. Talking through the benefits of research (and the ability to withdraw at any time) to those who are ‘protecting’ them may help to alleviate their concerns. One study describes ‘compassion’ and ‘vigilance’ as themes when investigating strategies that researchers have employed to manage ethical concerns in end-of-life research. [2]


Ethical concerns surrounding research with vulnerable populations include issues of consent; the resources and literature listed here may be of help.


References

  1. Wohleber AM, McKitrick DS, Davis SE. Designing research with hospice and palliative care populations. Am J Hosp Palliat Care. 2012 Aug;29(5):335-45. Epub 2011 Nov 21.
  2. Hickman SE, Cartwright JC, Nelson CA, Knafl K. Compassion and vigilance: investigators' strategies to manage ethical concerns in palliative and end-of-life research. J Palliat Med. 2012 Aug;15(8):880-9. Epub 2012 Jun 25.

Last updated 20 August 2021