- Email: [email protected]
Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU
ARTICLE IN PRESS Current Anaesthesia & Critical Care (2007) 18, 277–283
www.elsevier.com/locate/cacc
FOCUS ON: NEUROLOGY IN ICU
Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU Margot Heaneya,, Carole Foota, William D. Freemanb, John Frasera a
Critical Care Research Group, Intensive Care Unit, The Prince Charles Hospital, Rode Road, Chermside, Qld., Australia b Critical Care Neurology Division, Department of Neurology, Mayo Clinic Jacksonville, Jacksonville, FL, USA
KEYWORDS Withdrawal of care; Futility; Ethics; Intensive care
Summary Many individuals suffering from acute or progressive neurologic problems are managed in intensive care units. The capacity for these patients to exert autonomy regarding their own treatment is frequently compromised. Disease processes may impair consciousness and lucidity. Similarly, this may result from drugs, most frequently sedatives and analgesics that are necessitated by the treatments they are receiving, such as mechanical ventilation. This article will address the ethical and legal issues surrounding withdrawal of therapy, as they pertain to patients managed in intensive care units. Contemporary principles guiding clinicians’ decision making will be reviewed, followed by concerns and issues regarding common sources of conflict and misconception between patients, their families and healthcare professionals. & 2007 Elsevier Ltd. All rights reserved.
Introduction In the final stages of illnesses when treatment fails, or no longer provides a net benefit to the patient, the primary goal of medicine—to restore a person’s health—cannot be achieved and the justification for treatment no longer exists. In these situations where the burden of medical treatment outweighs the benefits, the question must be asked whether it is in the best interests of the patient to continue life-prolonging medical treatment, or whether a Corresponding author. Tel.: +61 731395488;
fax: +61 731396021. E-mail address: [email protected] (M. Heaney).
shift in treatment focus to palliation is required. This situation is frequently encountered in patients cared for in intensive care units (ICU). Many of these people are unable to communicate their wishes to their families and doctors. Many of these individuals are suffering from acute or progressive neurologic problems that are the focus of discussion in this issue of the journal. The withdrawal of life-prolonging medical treatment is a complex, emotionally charged and confronting issue for patient, medical team and family alike. This article is intended to help healthcare professionals who are faced with the decision of whether or not to withdraw lifeprolonging medical treatment from patients in the
0953-7112/$ - see front matter & 2007 Elsevier Ltd. All rights reserved. doi:10.1016/j.cacc.2007.09.002
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ICU. It provides a basic framework for the types of ethical considerations and dilemmas a clinician will need to consider in order to ensure an outcome, which is medically appropriate and facilitates a strong sense of trust in the therapeutic relationship among patients, family and their doctors. This topic, as it applies to intensive care medicine, has recently been reviewed from the UK perspective,1 and this article will describe the Australian situation, with contrasts to the US system described where relevant.
Guiding principles Modern technology and medical advancements have enabled the medical profession to treat disease and sustain life by artificial means when organ or system failure would otherwise naturally result in death. There is a heavy presumption in favour of administering life-prolonging treatment to a patient where that treatment provides a net benefit to that patient. These therapies include cardiopulmonary resuscitation, mechanical ventilation, renal replacement therapy, artificial hydration and nutrition (enteral and parenteral), vasoactive drug infusions, blood products and antibiotics. However, the ability of intensive care to replace or support vital organ function has resulted in some patients surviving for long periods of time without improvement in their condition or a terminal event.1 Some of the most important factors that should be taken into account when determining the best interests of the patient are included in Table 1. These include both medical and ethical considerations, and should be considered when determining whether or not withdrawal of lifeprolonging treatment is in patients’ best interests. Such decisions are often difficult and complex, and
Table 1 Considerations when evaluating patients’ best interests.
The patient’s diagnosis and likely prognosis with and without medical intervention
Assessing the benefits and burdens of current and/or proposed treatments
The patient’s own wishes and values where these can be ascertained
Views of those close to the patient regarding the likely wishes of the patient
Knowledge of the patient’s religious and cultural views that might impact on their wishes
need to involve close consultation and effective communication with the treating medical team, the patient and those close to the patient. How well a clinician can broach this sensitive topic with patient and family is correlated to how well the patient and family understand and accept this information and trust that the treating medical team has the best interests of the patient at the forefront of their treatment plan and goals.
What is withdrawal of medical treatment? The sanctity of human life and each individual’s right to be treated with dignity, compassion and respect underpin the medical decision to withdraw life-saving or life-prolonging treatment. A clinician’s primary goal for all patients is to improve their health, facilitate a meaningful recovery and provide quality medical care, treatment and support.2 A ‘meaningful recovery’ is usually interpreted in light of the values, beliefs and quality of life factors that are important to the individual patient. Such things generally include awareness of one’s self, and others, and the ability to interact in a meaningful and real way with others and the surrounding environment. A meaningful recovery generally affords a level of quality of life that the patient deems acceptable, or to that which the average, reasonable person deems acceptable. Withdrawing life-prolonging medical treatment is not done with the intention of killing the patient. It is distinguished from euthanasia and physicianassisted suicide because its primary goal is not to bring about the death of the patient. Withdrawing life-prolonging medical treatment helps the already dying patient to achieve a peaceful and dignified death, so that suffering and death is not unnecessarily prolonged as a result of medical intervention. When the decision to withhold or withdraw life-prolonging treatment has been made, treatment focus shifts to palliation. The primary aim of palliation is to relieve uncomfortable or unwanted symptoms rather than to cure the disease. Palliation includes the provision of reasonable medical and nursing procedures for the symptomatic relief of pain, suffering and discomfort.2 The clinician in charge of providing pain relief must do so with the primary purpose of obtaining symptomatic control of the patient’s pain, discomfort or distress, and not to cause or hasten the patient’s death; even though this may be one of the effects of administering such pain relief. This is known as the ‘principle of double
ARTICLE IN PRESS Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU effect’, and is readily distinguished from euthanasia or assisted suicide. This article does not support, endorse or condone euthanasia or assisted suicide, both of which are illegal in Australia. In the United States, physicianassisted suicide is illegal in all states except for Oregon.14
Who is involved in the decision making process? Whether or not to withdraw life-sustaining medical treatment is a complex, emotionally charged and confronting issue for patient, medical team and family alike. When a patient is competent to make decisions themselves, the treating medical team must respect the patient’s wishes. Doctors and medical staff have a duty to respect the patient’s right to refuse unwanted treatment and healthcare. This right is based on the well-founded principle of autonomy.3 Not respecting a competent patient’s right to refuse unwanted medical treatment is considered assault. Treatment given to a patient without obtaining consent can give rise to an action in battery (civil assault). It can also give rise to an action for criminal battery (assault) or if a procedure is administered, it may give rise to an action of ‘doing bodily harm’ or ‘grievous bodily harm’.4 When the patient is not competent to make decisions on their own behalf, then the decision to withdraw medical treatment is ultimately a medical decision made in the best interests of the patient. Doctors need to be careful, particularly when dealing with patients who cannot make decisions for themselves, not to transpose their beliefs, values and priorities onto the patient, but make a concerted effort to ascertain those of the patient.2 Determining what will be in the patient’s best interests requires consideration of medical and non-medical factors. Discussion with family members is of particular importance when the patient does not have the capacity to make or communicate decisions, as the family is likely to be aware of previously expressed patient wishes, or have an intimate knowledge and understanding of the patient’s wants, values and beliefs. When determining what course of action is in the best interests of the patient, the treating medical team should have a formal medical review regarding the patient’s condition and prognosis, and should consult closely with the patient’s family and loved ones as they are likely to be aware of any previously expressed views the patient may have held regarding end of life decisions.
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Areas of patient care frequently discussed in a formal medical review include prognosis of the patient’s condition; the efficacy of current treatment, whether it is justified, and any plausible alternative treatments which may offer a benefit to the patient, including palliation options. A therapeutic benefit occurs when a medical treatment or procedure confers some sort of symptomatic relief for the patient or improves the patient’s condition or prognosis in a real and meaningful way. This treatment is justified as it provides a real benefit. Futile treatment is treatment that cannot achieve its physiological aim and/or its desired benefit. Often when a treatment is considered to be futile the benefits afforded to the patient are outweighed by the burdens associated with such treatment. Because futile treatment does not benefit the patient the justification for providing the treatment does not exist, and the treatment should be withdrawn.5,6 Consideration is also given to the likelihood of meaningful recovery, how long the patient has been treated for, the degree of reported or perceived patient suffering, whether treatment has achieved its goals, whether the patient’s condition has improved, deteriorated or stayed the same, the nature of treatment required, the patient’s views if competent, as well as the views of family members. Those close to the patient usually want to feel involved in elements of patient care; they will also want to feel ‘part of the team’ in making end-oflife decisions about the patient. It is important that information such as the patient’s progress, treatment options and staff opinions be discussed with the family in an open and sensitive way. The treating medical team should aim to reach a consensus with those close to the patient on what treatment would be in the best interests of the patient, particularly when considering whether to continue or withdraw life-prolonging treatment. Holding regular family meetings is an effective way to explore these emotionally volatile and sensitive issues, and to gain greater understanding of the patient’s wants regarding life-prolonging medical treatment, their values and beliefs, and to educate the family and help them come to terms with their loved ones prognosis.
Common sources of conflict and misconceptions The treating medical team should be aware of common sources of conflict and common misconceptions that may occur between the medical staff
ARTICLE IN PRESS 280 and the patient or those close to the patient. These concerns and issues should be openly discussed with the patient and their family.7
Weight of decision-making power In complex cases where it is difficult to reach agreement, or where particular individuals advance strong arguments as to why an option may be considered controversial, it may be helpful to seek a clinical review independent of the treating medical team, and to arrange another meeting for the family and medical team. Although the decision to withhold or withdraw life-prolonging medical treatment is ultimately a medical decision, Australian courts are unclear as to what weight should be attached to family’s views. Whilst the patient’s family can offer important insights into the patient’s beliefs and views regarding end-of-life decisions, the clinician’s primary duty is always to the patient, and their best interests—not their families. Specific legislation varies between the states and territories of Australia, however, provisions exist in all areas for competent individuals to legally document their advanced health directives. When no such documents exist and an individual lacks competence to express their wishes, legally determined hierarchies exist ranking the relative importance of family, friends and caregivers in participating in discussions regarding the healthcare needs of their loved-ones. In the absence of any surrogate decision makers, legal bodies such as the ‘Adult Guardian’, in Queensland must be consulted. In the United States, patients may have a living will or legal document specifying certain circumstances in irreversible medical or neurological conditions such as persistent vegetative state or brain death that outline the course of action to withdraw life-prolonging measures of mechanical ventilation and other means of life support and nutrition. In cases where no such legal document has been made, the patient’s spouse is typically thought to be the decision maker for the patient. The physician then ascertains the patient’s wishes from the spouse about how to proceed. The spouse can convey what the patient would want in terms of level of medical support given the particular medical diagnosis, prognosis and overall medical scenario. If no spouse is available, the decision usually rests with the adult children to make decisions. If no children are available the siblings or other family members can be utilized for this
M. Heaney et al. purpose. The spouse or family is used unless the physician suspects a conflict of interest. Consideration should be given to seek a guardianship order or a court declaration for definitive resolution in cases where a unified decision cannot be reached, or there has been a significant breakdown in the relationship of the parties involved or where there is evidence of conflict of interest (e.g., patient’s condition is not irreversible and spouse has secondary gain). The courts are likely to remain the final arbiters in difficult cases.
Distributive justice/resource allocation Australians are fortunate enough to receive quality public health care for those who require it, not just those who can afford it. The healthcare dollar is finite. It has a limited pool of funds from which the public health system can draw from. It is the responsibility of society at large, as well as those who work within the health care industry, to think long and hard about resource allocation, costbenefit ratios and quality of life issues, and to acknowledge that we all have a responsibility towards maintaining a world-class public health care system. To date such public discussions by health care professionals remain taboo. In the United States, similar health care costs and pressures exist. Regardless of these issues medical decision-making is not made purely on health care costs. ICU facilities are intended to treat critically ill patients who have the potential to make a meaningful recovery. Patient’s inappropriately placed or maintained in the ICU prevent the treatment of other potential patients who would have greater benefit from the specialist care received. Furthermore, the cost to the hospital and state of maintaining a patient who is inappropriately placed in the ICU is a significant drain on the health care system. Furthermore, these patients are being unduly exposed to the burden of invasive treatment without the corresponding benefits of such treatment. As the health care system continues to reach crisis point, increasing pressure is placed on doctors to use limited resources wisely. This can conflict with one’s duty to patient versus a duty to the public health care system and public as a whole. Conversely, it is important to acknowledge that doctors are well placed to make informed decisions as to patient care that can include economically smart choices, as long as patient care does not suffer.
ARTICLE IN PRESS Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU Regrettably, a common misconception held by family regarding withdrawal of medical treatment is that medical staff do so to ‘free the bed’ for someone else. Doctors are advocates for their patients, and are bound to act in their best interests, both by law and by professional codes.8 Their primary duty is always to the patient they are treating, and the care of that patient will not be compromised for the care of another potential patient. Education and counselling regarding the indications for withdrawal of medical treatment are probably the best way to help the family come to terms with the prospect of withdrawal, and for continued trust in the treating medical team.
Organ donation Although research shows 94% of Australians support organ and tissue donation, only 30% have registered to become donors.9 Fifty percent of those registered to become donors never donate because their family do not consent to organ donation.10,11 One reason for the discrepancy between supporters and actual donors is the fear that medical personal will not ‘give it their all’ if they know someone is a registered donor. There is a popular fear that doctors will prematurely withdraw treatment if the patient is an organ donor. The idea that a potential donor will be sacrificed for multiple recipients in a utilitarian fashion is an unfortunate and grossly incorrect misconception. The ICU clinician is placed in a unique and precarious situation when faced with a patient who could be a potential organ donor and whose condition continues to deteriorate despite best efforts. Hospitals need to be more vigilant in identifying potential donors, not just patient’s who have registered to become donors, and seeking requests for organ donation. Failing to broach the topic of donation with either patient or family could potentially waste a valuable resource, which Australia cannot afford to squander. Organ donation not only saves lives, it improves the quality and functionality of them, and it reduces an everincreasing strain on our health care system. A ‘potential donor’ is usually identified after all measures to preserve life and to assist the patient in making a meaningful recovery have been attempted, and unfortunately the patient fails to recover. Unless the family or patient raises the issue of donation prior to patient death, the next of kin are usually approached for consent once the formal diagnosis of death has been made.11 The person best qualified to liaise with next of kin is
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either the senior doctor caring for the patient or the donor transplant coordinator.11 Treating doctors of the ‘potential donor’, the transplant team and the treating doctors of the ‘potential recipient’ remain separate entities. It is important that they remain as such for public and patient confidence and trust in medical professionals and the delivery of medical care. It is paramount that at all times the intentions and interests of each professional body are transparent, so that confidence in our medical system remains.
Abandonment Some patient’s and families may feel that if lifeprolonging treatment is withdrawn that the medical community has given up on the patient and no longer cares for them. It should be explained that when withdrawal of life-sustaining treatment occurs, the patient still receives medical care and supervision. The focus of care in these situations will shift to one of palliation. Patients, their families and carers should be reassured that symptom assessment, relief and nursing care will be provided, whatever decision is made about particular treatment regimes.
Denial Patients or family can sometimes have unrealistic expectations of current medical treatment. They may have unrealistic hopes, fears or guilt surrounding the patient’s condition and or treatment. Sometimes it is difficult for patients or their family to fully understand the prognosis or impact of disease burden on the patient’s life should they survive ICU. Denial can be a real issue for both patient and family going through the grieving process; either facing their own mortality or the loss of a loved one. These misconceptions can be addressed with more detailed explanations, statistics, important results including images and pictures, to help the family and patient better understand the patient’s situation. Examining the patient and demonstrating grossly abnormal signs in front of family members may be beneficial. For example, performance of brain stem tests may facilitate acceptance of brain death.12
Guilt Family, although close to the patient, are not responsible for making the decision to withhold or withdraw treatment. Despite this they commonly
ARTICLE IN PRESS 282 experience feelings of guilt, anxiety and bereavement. It is important that they receive appropriate care and counselling both before and after the decision has been made to withdraw life-prolonging treatment. Some people may feel as if they are ‘actively killing’ their loved one by withdrawing medical treatment rather than allowing the natural disease process to run its course. Again, education and counselling can provide support for family members in this instance. In particular, they should be advised that hospital social workers or counsellors are available to help the family through this difficult time.13 Patients’ may also feel under pressure not to ‘abandon’ the family or ‘give up’ on life, even though their condition is in its terminal phase. Similarly, some patients may feel like a burden to family, friends and the health care system and wish to withdraw treatment prematurely. Again, communicating openly and honestly with patient, family and staff is the most effective way for understanding and alleviating the ‘guilt’ associated with dying and or withdrawing treatment.
Futile/inappropriate treatment The treating medical team can be placed in a difficult position when a patient continues to receive invasive, life-prolonging treatment that is futile. Unless and until such medical interventions are withdrawn, the staff may feel that they are causing unnecessary and unjustified pain or discomfort for the patient, or merely prolonging death rather than preserving life. A therapeutic benefit occurs when a medical treatment or procedure confers some sort of symptomatic relief for the patient or improves the patient’s condition or prognosis in a real and meaningful way. This treatment is justified as it provides a real benefit. As previously stated, because futile treatment does not benefit the patient the justification for providing the treatment does not exist, and the treatment should be withdrawn.
Starting then stopping treatment Where patients lack capacity to make decisions about treatment, and there is a reasonable degree of uncertainty about the benefit of providing a particular treatment, treatment should be started until a clearer assessment can be made. It must be explained clearly to all those involved in caring for the patient that the treatment will be reviewed, and may be withdrawn at a later stage, if
M. Heaney et al. it is providing no net benefit, is inefficient or too burdensome for the patient. Some people may feel it is easier not to trial a particular treatment than to trial and subsequently withdraw, as withdrawing can feel like ‘giving up’ on the patient. It may be helpful to reiterate the possible benefits and burdens of the particular treatment, and then explain that the patient has had no benefit but still remains at risk of the possible burdens from the ongoing treatment. Discussing alternative treatments and reassuring the family that no one has ‘given up’ on the patient, and that all reasonable options to treat and improve the patient’s condition are being explored may allay fears of withdrawing treatment that is not beneficial.
Family conflict Conflicts of various kinds can arise. Those close to the patient may have antagonistic relationships with each other. Multiple people may attempt to assert decision-making authority. Strained relationships can develop between the treating medical team and those close to the patient. In these circumstances, close consideration needs to be given to conflict resolution pathways, counselling and appropriate safeguards should be in place to ensure the best interests of the patient are being served. In rare circumstances, if the relationship between the hospital staff and the family is highly antagonistic and cannot be salvaged through the available conflict resolution pathways, consideration may need to be given to changing the treating medical team, particularly the treating doctor or to transferring the patient to another hospital.
Conclusion Instead of death being viewed as a natural end to the continuum of life, modern society often views death as a foreign and much feared event. With the advent of advanced life support systems, modern medicine can replace or support vital organ function. This technology has resulted in some patients surviving for long periods of time without improvement to their condition or a terminal event. In these situations, the patient can remain in limbo: enduring the burdens of invasive medical treatment without the likelihood of having a meaningful recovery. When treatment is futile, and modern technology is simply prolonging death and the dying process
ARTICLE IN PRESS Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU rather than prolonging life, it is often in the best interests of the patient to withdraw life-prolonging medical treatment, and allow the patient’s illness to run its natural course.
Acknowledgments Dr. Freeman acknowledges research funding in part by the Robert H. and Clarice Smith/M.L. Simpson Foundation Trust Research Fellowship.
References 1. Young RJ, King A. Legal aspects of withdrawal of therapy. Anaesth Intensive Care 2003;31(5):501–8. 2. Withholding and withdrawing life-prolonging treatments: good practice in decision-making, /http://www.gmc-uk. org/standards/judicial_review_life_prolonging_treatment_ 2htmS. 3. Re T (1992) 3 Med LR 306; Department of Health and Community Services (NT) v JWB (Marion’s Case‘ CASE) (1992) 175 clr 218; Malette v Shulman (1990) 2 Med LR 162; Ms B v NHS Hospital Trust (2002) EWHC 429 (Fam). 4. Devereux J. Medical law: text cases and materials. Sydney: Cavendish Publishing; 1997.
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5. Isaac Messiha (by his tutor Magdy Messiha) v South East Health [2004] NSWSC 1061 (11 November 2004) at 26. 6. AMA position statement—care of severely and terminally ill patients, 1997; and MC, Re [2003] QGAAT 13 (8 September 2003). 7. Guidelines for conflicts concerning requests to withhold or withdraw life-sustaining medical treatment—medical executive committee. Froedtert Memorial Lutheran Hospital, /http://www.capc.org/tools-for-palliative-care-programs/ clinical-tools/policies-procedures/withhold-conflict-mgmt. pdfS. 8. Code of professional ethics; Sidaway v Governors of Bethlem Royal Hospital, 1985, AC 871. 9. Organ donor rate misery. The Daily Telegraph, Tuesday 12 September 2006; Bob Hart, ‘‘The Organizer’’ the Herald Sun, Saturday 29 July 2006, p. 2. 10. Opdam H, Silvester W. Potential for organ donation in Victoria: an audit of hospital deaths. Med J Aust 2006;185: 245–6. 11. In all Australian States and Territories, as long as the deceased has demonstrated a clear intention to donate their organs (some States mandate this be in writing) the next of kin does not have authority to over ride such a decision. See Human Tissue Act (NSW, VIC, TAS); Transplantation and Anatomy Act (ACT, QLD); Human Tissue and Transplant Act (WA, NT). 12. Doran M. The presence of family during brain stem death testing. Intensive Crit Care Nurs 2004;20(1):32–7. 13. ibid n18 14. O’Brien CN, Madek GA, Ferrera GR. Oregon’s guidelines for physician-assisted suicide: a legal and ethical analysis. Univ Pittsbg Law Rev 2000;61(2):329–65.
www.elsevier.com/locate/cacc
FOCUS ON: NEUROLOGY IN ICU
Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU Margot Heaneya,, Carole Foota, William D. Freemanb, John Frasera a
Critical Care Research Group, Intensive Care Unit, The Prince Charles Hospital, Rode Road, Chermside, Qld., Australia b Critical Care Neurology Division, Department of Neurology, Mayo Clinic Jacksonville, Jacksonville, FL, USA
KEYWORDS Withdrawal of care; Futility; Ethics; Intensive care
Summary Many individuals suffering from acute or progressive neurologic problems are managed in intensive care units. The capacity for these patients to exert autonomy regarding their own treatment is frequently compromised. Disease processes may impair consciousness and lucidity. Similarly, this may result from drugs, most frequently sedatives and analgesics that are necessitated by the treatments they are receiving, such as mechanical ventilation. This article will address the ethical and legal issues surrounding withdrawal of therapy, as they pertain to patients managed in intensive care units. Contemporary principles guiding clinicians’ decision making will be reviewed, followed by concerns and issues regarding common sources of conflict and misconception between patients, their families and healthcare professionals. & 2007 Elsevier Ltd. All rights reserved.
Introduction In the final stages of illnesses when treatment fails, or no longer provides a net benefit to the patient, the primary goal of medicine—to restore a person’s health—cannot be achieved and the justification for treatment no longer exists. In these situations where the burden of medical treatment outweighs the benefits, the question must be asked whether it is in the best interests of the patient to continue life-prolonging medical treatment, or whether a Corresponding author. Tel.: +61 731395488;
fax: +61 731396021. E-mail address: [email protected] (M. Heaney).
shift in treatment focus to palliation is required. This situation is frequently encountered in patients cared for in intensive care units (ICU). Many of these people are unable to communicate their wishes to their families and doctors. Many of these individuals are suffering from acute or progressive neurologic problems that are the focus of discussion in this issue of the journal. The withdrawal of life-prolonging medical treatment is a complex, emotionally charged and confronting issue for patient, medical team and family alike. This article is intended to help healthcare professionals who are faced with the decision of whether or not to withdraw lifeprolonging medical treatment from patients in the
0953-7112/$ - see front matter & 2007 Elsevier Ltd. All rights reserved. doi:10.1016/j.cacc.2007.09.002
ARTICLE IN PRESS 278
M. Heaney et al.
ICU. It provides a basic framework for the types of ethical considerations and dilemmas a clinician will need to consider in order to ensure an outcome, which is medically appropriate and facilitates a strong sense of trust in the therapeutic relationship among patients, family and their doctors. This topic, as it applies to intensive care medicine, has recently been reviewed from the UK perspective,1 and this article will describe the Australian situation, with contrasts to the US system described where relevant.
Guiding principles Modern technology and medical advancements have enabled the medical profession to treat disease and sustain life by artificial means when organ or system failure would otherwise naturally result in death. There is a heavy presumption in favour of administering life-prolonging treatment to a patient where that treatment provides a net benefit to that patient. These therapies include cardiopulmonary resuscitation, mechanical ventilation, renal replacement therapy, artificial hydration and nutrition (enteral and parenteral), vasoactive drug infusions, blood products and antibiotics. However, the ability of intensive care to replace or support vital organ function has resulted in some patients surviving for long periods of time without improvement in their condition or a terminal event.1 Some of the most important factors that should be taken into account when determining the best interests of the patient are included in Table 1. These include both medical and ethical considerations, and should be considered when determining whether or not withdrawal of lifeprolonging treatment is in patients’ best interests. Such decisions are often difficult and complex, and
Table 1 Considerations when evaluating patients’ best interests.
The patient’s diagnosis and likely prognosis with and without medical intervention
Assessing the benefits and burdens of current and/or proposed treatments
The patient’s own wishes and values where these can be ascertained
Views of those close to the patient regarding the likely wishes of the patient
Knowledge of the patient’s religious and cultural views that might impact on their wishes
need to involve close consultation and effective communication with the treating medical team, the patient and those close to the patient. How well a clinician can broach this sensitive topic with patient and family is correlated to how well the patient and family understand and accept this information and trust that the treating medical team has the best interests of the patient at the forefront of their treatment plan and goals.
What is withdrawal of medical treatment? The sanctity of human life and each individual’s right to be treated with dignity, compassion and respect underpin the medical decision to withdraw life-saving or life-prolonging treatment. A clinician’s primary goal for all patients is to improve their health, facilitate a meaningful recovery and provide quality medical care, treatment and support.2 A ‘meaningful recovery’ is usually interpreted in light of the values, beliefs and quality of life factors that are important to the individual patient. Such things generally include awareness of one’s self, and others, and the ability to interact in a meaningful and real way with others and the surrounding environment. A meaningful recovery generally affords a level of quality of life that the patient deems acceptable, or to that which the average, reasonable person deems acceptable. Withdrawing life-prolonging medical treatment is not done with the intention of killing the patient. It is distinguished from euthanasia and physicianassisted suicide because its primary goal is not to bring about the death of the patient. Withdrawing life-prolonging medical treatment helps the already dying patient to achieve a peaceful and dignified death, so that suffering and death is not unnecessarily prolonged as a result of medical intervention. When the decision to withhold or withdraw life-prolonging treatment has been made, treatment focus shifts to palliation. The primary aim of palliation is to relieve uncomfortable or unwanted symptoms rather than to cure the disease. Palliation includes the provision of reasonable medical and nursing procedures for the symptomatic relief of pain, suffering and discomfort.2 The clinician in charge of providing pain relief must do so with the primary purpose of obtaining symptomatic control of the patient’s pain, discomfort or distress, and not to cause or hasten the patient’s death; even though this may be one of the effects of administering such pain relief. This is known as the ‘principle of double
ARTICLE IN PRESS Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU effect’, and is readily distinguished from euthanasia or assisted suicide. This article does not support, endorse or condone euthanasia or assisted suicide, both of which are illegal in Australia. In the United States, physicianassisted suicide is illegal in all states except for Oregon.14
Who is involved in the decision making process? Whether or not to withdraw life-sustaining medical treatment is a complex, emotionally charged and confronting issue for patient, medical team and family alike. When a patient is competent to make decisions themselves, the treating medical team must respect the patient’s wishes. Doctors and medical staff have a duty to respect the patient’s right to refuse unwanted treatment and healthcare. This right is based on the well-founded principle of autonomy.3 Not respecting a competent patient’s right to refuse unwanted medical treatment is considered assault. Treatment given to a patient without obtaining consent can give rise to an action in battery (civil assault). It can also give rise to an action for criminal battery (assault) or if a procedure is administered, it may give rise to an action of ‘doing bodily harm’ or ‘grievous bodily harm’.4 When the patient is not competent to make decisions on their own behalf, then the decision to withdraw medical treatment is ultimately a medical decision made in the best interests of the patient. Doctors need to be careful, particularly when dealing with patients who cannot make decisions for themselves, not to transpose their beliefs, values and priorities onto the patient, but make a concerted effort to ascertain those of the patient.2 Determining what will be in the patient’s best interests requires consideration of medical and non-medical factors. Discussion with family members is of particular importance when the patient does not have the capacity to make or communicate decisions, as the family is likely to be aware of previously expressed patient wishes, or have an intimate knowledge and understanding of the patient’s wants, values and beliefs. When determining what course of action is in the best interests of the patient, the treating medical team should have a formal medical review regarding the patient’s condition and prognosis, and should consult closely with the patient’s family and loved ones as they are likely to be aware of any previously expressed views the patient may have held regarding end of life decisions.
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Areas of patient care frequently discussed in a formal medical review include prognosis of the patient’s condition; the efficacy of current treatment, whether it is justified, and any plausible alternative treatments which may offer a benefit to the patient, including palliation options. A therapeutic benefit occurs when a medical treatment or procedure confers some sort of symptomatic relief for the patient or improves the patient’s condition or prognosis in a real and meaningful way. This treatment is justified as it provides a real benefit. Futile treatment is treatment that cannot achieve its physiological aim and/or its desired benefit. Often when a treatment is considered to be futile the benefits afforded to the patient are outweighed by the burdens associated with such treatment. Because futile treatment does not benefit the patient the justification for providing the treatment does not exist, and the treatment should be withdrawn.5,6 Consideration is also given to the likelihood of meaningful recovery, how long the patient has been treated for, the degree of reported or perceived patient suffering, whether treatment has achieved its goals, whether the patient’s condition has improved, deteriorated or stayed the same, the nature of treatment required, the patient’s views if competent, as well as the views of family members. Those close to the patient usually want to feel involved in elements of patient care; they will also want to feel ‘part of the team’ in making end-oflife decisions about the patient. It is important that information such as the patient’s progress, treatment options and staff opinions be discussed with the family in an open and sensitive way. The treating medical team should aim to reach a consensus with those close to the patient on what treatment would be in the best interests of the patient, particularly when considering whether to continue or withdraw life-prolonging treatment. Holding regular family meetings is an effective way to explore these emotionally volatile and sensitive issues, and to gain greater understanding of the patient’s wants regarding life-prolonging medical treatment, their values and beliefs, and to educate the family and help them come to terms with their loved ones prognosis.
Common sources of conflict and misconceptions The treating medical team should be aware of common sources of conflict and common misconceptions that may occur between the medical staff
ARTICLE IN PRESS 280 and the patient or those close to the patient. These concerns and issues should be openly discussed with the patient and their family.7
Weight of decision-making power In complex cases where it is difficult to reach agreement, or where particular individuals advance strong arguments as to why an option may be considered controversial, it may be helpful to seek a clinical review independent of the treating medical team, and to arrange another meeting for the family and medical team. Although the decision to withhold or withdraw life-prolonging medical treatment is ultimately a medical decision, Australian courts are unclear as to what weight should be attached to family’s views. Whilst the patient’s family can offer important insights into the patient’s beliefs and views regarding end-of-life decisions, the clinician’s primary duty is always to the patient, and their best interests—not their families. Specific legislation varies between the states and territories of Australia, however, provisions exist in all areas for competent individuals to legally document their advanced health directives. When no such documents exist and an individual lacks competence to express their wishes, legally determined hierarchies exist ranking the relative importance of family, friends and caregivers in participating in discussions regarding the healthcare needs of their loved-ones. In the absence of any surrogate decision makers, legal bodies such as the ‘Adult Guardian’, in Queensland must be consulted. In the United States, patients may have a living will or legal document specifying certain circumstances in irreversible medical or neurological conditions such as persistent vegetative state or brain death that outline the course of action to withdraw life-prolonging measures of mechanical ventilation and other means of life support and nutrition. In cases where no such legal document has been made, the patient’s spouse is typically thought to be the decision maker for the patient. The physician then ascertains the patient’s wishes from the spouse about how to proceed. The spouse can convey what the patient would want in terms of level of medical support given the particular medical diagnosis, prognosis and overall medical scenario. If no spouse is available, the decision usually rests with the adult children to make decisions. If no children are available the siblings or other family members can be utilized for this
M. Heaney et al. purpose. The spouse or family is used unless the physician suspects a conflict of interest. Consideration should be given to seek a guardianship order or a court declaration for definitive resolution in cases where a unified decision cannot be reached, or there has been a significant breakdown in the relationship of the parties involved or where there is evidence of conflict of interest (e.g., patient’s condition is not irreversible and spouse has secondary gain). The courts are likely to remain the final arbiters in difficult cases.
Distributive justice/resource allocation Australians are fortunate enough to receive quality public health care for those who require it, not just those who can afford it. The healthcare dollar is finite. It has a limited pool of funds from which the public health system can draw from. It is the responsibility of society at large, as well as those who work within the health care industry, to think long and hard about resource allocation, costbenefit ratios and quality of life issues, and to acknowledge that we all have a responsibility towards maintaining a world-class public health care system. To date such public discussions by health care professionals remain taboo. In the United States, similar health care costs and pressures exist. Regardless of these issues medical decision-making is not made purely on health care costs. ICU facilities are intended to treat critically ill patients who have the potential to make a meaningful recovery. Patient’s inappropriately placed or maintained in the ICU prevent the treatment of other potential patients who would have greater benefit from the specialist care received. Furthermore, the cost to the hospital and state of maintaining a patient who is inappropriately placed in the ICU is a significant drain on the health care system. Furthermore, these patients are being unduly exposed to the burden of invasive treatment without the corresponding benefits of such treatment. As the health care system continues to reach crisis point, increasing pressure is placed on doctors to use limited resources wisely. This can conflict with one’s duty to patient versus a duty to the public health care system and public as a whole. Conversely, it is important to acknowledge that doctors are well placed to make informed decisions as to patient care that can include economically smart choices, as long as patient care does not suffer.
ARTICLE IN PRESS Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU Regrettably, a common misconception held by family regarding withdrawal of medical treatment is that medical staff do so to ‘free the bed’ for someone else. Doctors are advocates for their patients, and are bound to act in their best interests, both by law and by professional codes.8 Their primary duty is always to the patient they are treating, and the care of that patient will not be compromised for the care of another potential patient. Education and counselling regarding the indications for withdrawal of medical treatment are probably the best way to help the family come to terms with the prospect of withdrawal, and for continued trust in the treating medical team.
Organ donation Although research shows 94% of Australians support organ and tissue donation, only 30% have registered to become donors.9 Fifty percent of those registered to become donors never donate because their family do not consent to organ donation.10,11 One reason for the discrepancy between supporters and actual donors is the fear that medical personal will not ‘give it their all’ if they know someone is a registered donor. There is a popular fear that doctors will prematurely withdraw treatment if the patient is an organ donor. The idea that a potential donor will be sacrificed for multiple recipients in a utilitarian fashion is an unfortunate and grossly incorrect misconception. The ICU clinician is placed in a unique and precarious situation when faced with a patient who could be a potential organ donor and whose condition continues to deteriorate despite best efforts. Hospitals need to be more vigilant in identifying potential donors, not just patient’s who have registered to become donors, and seeking requests for organ donation. Failing to broach the topic of donation with either patient or family could potentially waste a valuable resource, which Australia cannot afford to squander. Organ donation not only saves lives, it improves the quality and functionality of them, and it reduces an everincreasing strain on our health care system. A ‘potential donor’ is usually identified after all measures to preserve life and to assist the patient in making a meaningful recovery have been attempted, and unfortunately the patient fails to recover. Unless the family or patient raises the issue of donation prior to patient death, the next of kin are usually approached for consent once the formal diagnosis of death has been made.11 The person best qualified to liaise with next of kin is
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either the senior doctor caring for the patient or the donor transplant coordinator.11 Treating doctors of the ‘potential donor’, the transplant team and the treating doctors of the ‘potential recipient’ remain separate entities. It is important that they remain as such for public and patient confidence and trust in medical professionals and the delivery of medical care. It is paramount that at all times the intentions and interests of each professional body are transparent, so that confidence in our medical system remains.
Abandonment Some patient’s and families may feel that if lifeprolonging treatment is withdrawn that the medical community has given up on the patient and no longer cares for them. It should be explained that when withdrawal of life-sustaining treatment occurs, the patient still receives medical care and supervision. The focus of care in these situations will shift to one of palliation. Patients, their families and carers should be reassured that symptom assessment, relief and nursing care will be provided, whatever decision is made about particular treatment regimes.
Denial Patients or family can sometimes have unrealistic expectations of current medical treatment. They may have unrealistic hopes, fears or guilt surrounding the patient’s condition and or treatment. Sometimes it is difficult for patients or their family to fully understand the prognosis or impact of disease burden on the patient’s life should they survive ICU. Denial can be a real issue for both patient and family going through the grieving process; either facing their own mortality or the loss of a loved one. These misconceptions can be addressed with more detailed explanations, statistics, important results including images and pictures, to help the family and patient better understand the patient’s situation. Examining the patient and demonstrating grossly abnormal signs in front of family members may be beneficial. For example, performance of brain stem tests may facilitate acceptance of brain death.12
Guilt Family, although close to the patient, are not responsible for making the decision to withhold or withdraw treatment. Despite this they commonly
ARTICLE IN PRESS 282 experience feelings of guilt, anxiety and bereavement. It is important that they receive appropriate care and counselling both before and after the decision has been made to withdraw life-prolonging treatment. Some people may feel as if they are ‘actively killing’ their loved one by withdrawing medical treatment rather than allowing the natural disease process to run its course. Again, education and counselling can provide support for family members in this instance. In particular, they should be advised that hospital social workers or counsellors are available to help the family through this difficult time.13 Patients’ may also feel under pressure not to ‘abandon’ the family or ‘give up’ on life, even though their condition is in its terminal phase. Similarly, some patients may feel like a burden to family, friends and the health care system and wish to withdraw treatment prematurely. Again, communicating openly and honestly with patient, family and staff is the most effective way for understanding and alleviating the ‘guilt’ associated with dying and or withdrawing treatment.
Futile/inappropriate treatment The treating medical team can be placed in a difficult position when a patient continues to receive invasive, life-prolonging treatment that is futile. Unless and until such medical interventions are withdrawn, the staff may feel that they are causing unnecessary and unjustified pain or discomfort for the patient, or merely prolonging death rather than preserving life. A therapeutic benefit occurs when a medical treatment or procedure confers some sort of symptomatic relief for the patient or improves the patient’s condition or prognosis in a real and meaningful way. This treatment is justified as it provides a real benefit. As previously stated, because futile treatment does not benefit the patient the justification for providing the treatment does not exist, and the treatment should be withdrawn.
Starting then stopping treatment Where patients lack capacity to make decisions about treatment, and there is a reasonable degree of uncertainty about the benefit of providing a particular treatment, treatment should be started until a clearer assessment can be made. It must be explained clearly to all those involved in caring for the patient that the treatment will be reviewed, and may be withdrawn at a later stage, if
M. Heaney et al. it is providing no net benefit, is inefficient or too burdensome for the patient. Some people may feel it is easier not to trial a particular treatment than to trial and subsequently withdraw, as withdrawing can feel like ‘giving up’ on the patient. It may be helpful to reiterate the possible benefits and burdens of the particular treatment, and then explain that the patient has had no benefit but still remains at risk of the possible burdens from the ongoing treatment. Discussing alternative treatments and reassuring the family that no one has ‘given up’ on the patient, and that all reasonable options to treat and improve the patient’s condition are being explored may allay fears of withdrawing treatment that is not beneficial.
Family conflict Conflicts of various kinds can arise. Those close to the patient may have antagonistic relationships with each other. Multiple people may attempt to assert decision-making authority. Strained relationships can develop between the treating medical team and those close to the patient. In these circumstances, close consideration needs to be given to conflict resolution pathways, counselling and appropriate safeguards should be in place to ensure the best interests of the patient are being served. In rare circumstances, if the relationship between the hospital staff and the family is highly antagonistic and cannot be salvaged through the available conflict resolution pathways, consideration may need to be given to changing the treating medical team, particularly the treating doctor or to transferring the patient to another hospital.
Conclusion Instead of death being viewed as a natural end to the continuum of life, modern society often views death as a foreign and much feared event. With the advent of advanced life support systems, modern medicine can replace or support vital organ function. This technology has resulted in some patients surviving for long periods of time without improvement to their condition or a terminal event. In these situations, the patient can remain in limbo: enduring the burdens of invasive medical treatment without the likelihood of having a meaningful recovery. When treatment is futile, and modern technology is simply prolonging death and the dying process
ARTICLE IN PRESS Ethical issues in withholding and withdrawing life-prolonging medical treatment in the ICU rather than prolonging life, it is often in the best interests of the patient to withdraw life-prolonging medical treatment, and allow the patient’s illness to run its natural course.
Acknowledgments Dr. Freeman acknowledges research funding in part by the Robert H. and Clarice Smith/M.L. Simpson Foundation Trust Research Fellowship.
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5. Isaac Messiha (by his tutor Magdy Messiha) v South East Health [2004] NSWSC 1061 (11 November 2004) at 26. 6. AMA position statement—care of severely and terminally ill patients, 1997; and MC, Re [2003] QGAAT 13 (8 September 2003). 7. Guidelines for conflicts concerning requests to withhold or withdraw life-sustaining medical treatment—medical executive committee. Froedtert Memorial Lutheran Hospital, /http://www.capc.org/tools-for-palliative-care-programs/ clinical-tools/policies-procedures/withhold-conflict-mgmt. pdfS. 8. Code of professional ethics; Sidaway v Governors of Bethlem Royal Hospital, 1985, AC 871. 9. Organ donor rate misery. The Daily Telegraph, Tuesday 12 September 2006; Bob Hart, ‘‘The Organizer’’ the Herald Sun, Saturday 29 July 2006, p. 2. 10. Opdam H, Silvester W. Potential for organ donation in Victoria: an audit of hospital deaths. Med J Aust 2006;185: 245–6. 11. In all Australian States and Territories, as long as the deceased has demonstrated a clear intention to donate their organs (some States mandate this be in writing) the next of kin does not have authority to over ride such a decision. See Human Tissue Act (NSW, VIC, TAS); Transplantation and Anatomy Act (ACT, QLD); Human Tissue and Transplant Act (WA, NT). 12. Doran M. The presence of family during brain stem death testing. Intensive Crit Care Nurs 2004;20(1):32–7. 13. ibid n18 14. O’Brien CN, Madek GA, Ferrera GR. Oregon’s guidelines for physician-assisted suicide: a legal and ethical analysis. Univ Pittsbg Law Rev 2000;61(2):329–65.