The Ethics and Practice of Twenty-First Century Intensive Care Units

It is ethically and legally important to respect patient’s autonomy and dignity and to always act in their best interests and avoid doing harm, writes Professor William Silvester.
I imagine that we all have moments in our careers where we stop and question whether we are “doing good”. In 2001 I was caring for an elderly man with advanced cancer who was being treated in the ICU for pneumonia. He had deteriorated on the ward and was not capable of expressing his views about what he wanted. He was transferred to the ICU urgently, without time for discussion with the family and he ended his final days unconscious on a mechanical ventilator before dying. His wife and daughter came to me with tears in their eyes, saying that they could have told us that he would never have wanted to die this way if someone had only bothered to ask. It was evident that no one had asked him what he would want if he deteriorated and was thought unlikely to recover.
This led to me reviewing the literature on how we could do a better job of caring for people who are dying. I became aware, for the first time, of the concept of advance care planning. Advance care planning (ACP) is simply speaking to patients about what medical treatment they would or would not want in the future if they became too unwell to tell the doctors. ACP complies with good medical practice including supporting shared decision making, substitute decision making and good end of life care.
Given the great advances in medical technology and treatments, it places a responsibility on our shoulders to ensure that the technology is being used wisely. This applies outside the ICU as much as within. The ultimate goal, whether the patients are elderly or younger, is to prevent them and their families from suffering if there is nothing to be gained.
The ethical principles underscoring this include autonomy and informed consent[i]^,[ii], and the “best interests” test for the non-competent patient[iii]. Here the substitute decision maker would consider the patient’s previously stated wishes, and would consider that person’s goals, values and beliefs. The fourth ethical principle is that of dignity, including the prevention of suffering. The recognition that the patient has the right to consent to medical and surgical treatment, or to refuse that which they consider offers insufficient benefit, or to be overly burdensome, is supported by Catholic Health Australia’s Code of Ethics[iv]. This includes including life-sustaining treatments.
Why focus on end of life care?
During the last twenty years there has been an increased focus on the quality of end of life care^2,[v], and the provision of a “good death”[vi]^,[vii]. This has been based on the recognition that the delivery of good end of life care is often poor^2,5,6. The five elements of a good death, as identified by the patients, are:

• Good symptom management


• Avoiding prolongation of dying


• Achieving a sense of control


• Relieving burdens placed on the family


• Strengthening relationships

Provision of end of life care is an increasingly important part of hospital care, particularly in intensive care units. In the USA 22% of all deaths occur in the ICU or shortly after discharge[viii]. There is wide variation between countries, even within the Western world. For example, although rates of acute hospitalisation and mortality rates in the USA and the UK are similar, only 10.1% of hospital deaths in the UK occur in ICU whereas 47.1% of hospital deaths occur in USA ICUs[ix]. The UK has only one sixth of the ICU beds per capita in comparison to the USA[x] and is much less likely to admit the elderly to intensive care.
Limitation of treatment in ICU
Limitation of treatment (LOT) is becoming increasingly important in hospital and ICU deaths. A review of 31,000 ICU admissions in 37 ICUs in 17 European countries from 1999 to 2000 showed that, of 4000 patients who died, 76% of the deaths had a limitation of treatment order[xi]. The limitation of treatment order was to withhold treatment in 52%, withdraw treatment in 46% and actively shorten life in 2%; the mortality in each group was 89%, 99% and 100% respectively. There are similar proportions of deaths in ICUs in Australia[xii] and in paediatric intensive care[xiii] with limitation of treatment in 75-81%.
A review of end of life care practice in 282 European ICUs revealed that 8.6% of 14,000 patients had a limitation of treatment order, roughly evenly distributed between withholding (86% died) and withdrawing (93% died)[xiv]. Limitation of treatment was more common in northern European countries and in those patients with higher severity of illness and more pre-existing co-morbidities.
There is also an increasing tendency to impose a limitation of treatment on patients prior to ICU admission. A retrospective audit of the Australian & New Zealand Intensive Care Society (ANZICS) database between 2007 and 2009 showed that, of 281,000 admissions, 2% had treatment limited when admitted to the ICU[xv]. The mortality in these patients was 53%, compared with only 9% in those with an active management plan (p ,< 0.001). One third of the survivors went to another hospital, a rehabilitation hospital or a nursing home, leaving only 31% with a known good outcome. As in the study above, the likelihood of a treatment limitation and, independently, of death, correlated with age, severity of illness and pre-existing co-morbidities.
According to the ANZICS database, in the five years between 1998 and 2003 the number of patients aged over 80 admitted to ICU has increased by 44% from 9% to 12.9% of all admissions.
End of life care in the ICU
So what is the approach of the intensive care community to end of life care? The European, American[xvi], Canadian, United Kingdom[xvii], Australian and New Zealand[xviii] societies and colleges of intensive care medicine, amongst others, all have policies and guidelines on providing good end of life care. The elements that are common to all these documents include:

• Support for Principles: autonomy, beneficence, non-maleficence


• Support for respecting patients’ expressed choices, directly recorded or via substitute decision maker


• Support for advance care planning


• Provision of comfort care and respecting patient dignity


• Recognition that ICU can be good but may be of no benefit and cause suffering


• Importance of judging benefits against burdens including suffering, loss of dignity


• Not being obliged to start or continue Rx of no benefit


• That competent pts can refuse Rx, even if it leads to death


• That a doctor’s job is to inform the pt & to ensure competence


• That LOT decisions:
  
  
  
  • can be initiated by the pt, family or health professional
  
  
  • need medical consensus
  
  
  • should seek agreement of SDM/family
  
  
  • the burden does not rest solely with NOK
  
  
  • may need assistance of a 3rd party, ethics review or legal advice
  
  
  • need to be documented: the why, who & how
  
  
  
  


• Provision of a comfort plan, prescribing the palliative approach


• That symptom medication is appropriate, even if shortens life


• That even if there is a LOT, still care for the patient fully, ie don’t abandon the patient


• That it is important to take care of the patient’s family

Truog et al emphasised the importance that doctors involved in end of life care understand the distinctions between a) withholding versus withdrawing treatment, b) actions of killing versus allowing to die and c) consequences that are intended versus consequences that are merely foreseen but not the primary intention²⁸. The latter is known as the “doctrine of double effect” and refers to the effect that morphine may hasten death, which is foreseen but not intended given that the primary intention of administering the morphine is to treat suffering, not to hasten death.
End of life decision-making
How, and by whom, end of life decisions are made is contentious, variable and fraught with ethical and legal arguments. There are a number of realities and principles that need to be stated.
Firstly, decisions have to be made whether we like it or not. By avoiding or delaying a decision, at a time when there is a change in a patient’s condition that requires a medical response, is a decision in itself to maintain the status quo. This may be in the setting of not withdrawing treatment in a patient who is dying, or it may be the case of a patient who is deteriorating and may require intensive care to have any chance of survival. By not acting the doctor has still made a decision and cannot pretend that it was out of their control.
Secondly, the pendulum has swung away from the days-of-old when medical decision making was paternalistic (and there were not as many decisions to be made then as there was less medical technology at hand) towards a period of focus just on patient autonomy where doctors were expected to comply with any patient or family wish. The pendulum has now, sensibly, swung back towards a shared decision-making approach[xix].
Thirdly, although in all jurisdictions it is an assault to operate or perform other medical interventions on a patient without appropriate consent, the legal, ethical and societal judgement as to who makes the decision to limit treatment varies from country to country. In the USA a treatment limitation requires the consent of the patient or of the family of a non-competent patient. For example, in New York state a patient cannot be deemed not for resuscitation without the written consent of the patient. Whereas in Australia a decision to limit treatment is ultimately made by a doctor who is governed by the common law duty and, in some jurisdictions by the legislative law, to act in the patient’s best interests. In fact, in some jurisdictions, such as the Australian state of New South Wales, family members have no legal right to request or demand cessation of treatment unless they have been given special powers to do so by the guardianship tribunal as part of an enduring guardianship appointment.
How do doctors make end of life decisions?
If the doctor does make the decision, what are the factors that influence the decision? The first of these is their judgement of the patient’s prognosis. Although prognostic tools such as severity of illness scoring systems are accurate group predictors (predicting what percentage of a cohort of patients with similar diagnosis and severity of illness will die) they are not able to accurately predict an individual’s mortality better than the well-educated experienced doctor[xx]. However we have all seen patients survive unexpectedly, indeed sometimes after we have initiated the de-escalation of therapy!
The second factor that influences the decision is the doctor’s best guess as to the patient’s preferences. In the vast majority of critically ill patients they are not able to make decisions or inform the doctors as to their preferences. The doctors are not always good at predicting these and it emphasises the importance of advance care plans. In reflecting on a patient’s preferences we recommend that the focus of the consideration be on the likely outcome rather than on the specific treatment. Many patients are prepared to go through the burden of invasive treatment if there is expected to be a good outcome. If, however, a poor functional outcome is anticipated, particularly if the poor function is due to cognitive impairment there is a rapid falloff in willingness to accept the treatment[xxi]. In their absence we rely on the patient’s family, friends or legally appointed decision makers.
Substitute decision makers, however, incorrectly predict a patient’s end of life wishes at least 32% of the time[xxii]. Indeed, in one study it was shown that, even when the children of elderly patients knew that their parent would not want the intensive care therapy being proposed, the children would still request that the doctors initiate the therapy until the family have gathered, seen for themselves how “things are going” and come to a consensus about what to do[xxiii].
The good news is that patient-centred advance care planning has been shown to increase concordance between patient wishes and the prediction of others^17,[xxiv].
The third factor that influences a doctor’s decisions and management of end of life is their own values and beliefs. In a study of the attitudes of European ICU doctors, nurses, patients and families, Sprung et al showed that ICU doctors and nurses placed greater value on “quality of life”, and lesser value on “value of life” than did either the ICU patients or their relatives[xxv]. ICU doctors and nurses, if faced with a terminal condition or a poor neurological outcome, were less likely to want ICU admission, CPR or ventilation and more likely to want end of life care at home or in a hospice than the ICU patients or their relatives. This may simply be a reflection of their own medical knowledge and witnessed suffering of others. It could be argued that a clinician’s personal views should not influence the decisions that they make for others. On the other hand, a human being who brings expertise and experience to the decision may be just what the patient would want.
Although one study showed that the majority of substitute decision makers want to have final say over life and death decisions (55% alone, 40% to share it with the doctor)[xxvi], many patients want their doctor and family to make the decision together[xxvii].
So how should intensive care doctors approach these difficult decisions?
They should:

• Always act in the patient’s best interests and avoid doing harm[xxviii]
  


• Decide what life sustaining treatment is medically indicated. If need be, if there is doubt or if they anticipate questioning of their decision from the patient or family, then they should seek a second opinion and aim for medical consensus.


• Communicate their views to the patient or the family / substitute decision maker of the non-competent family


• Seek agreement with the patient and/or family/substitute decision maker.


• If the patient or the family / substitute decision maker do not agree with the decision they should give them time to see for themselves or, if uncertainty exists, consider a trial of treatment, with agreed time or treatment limits if the patient does not improve[xxix].


• Carefully document medical opinions, decisions and communications with the patient and family


• Remember to listen more than to talk and provide reassurance about the avoidance of suffering.

What is the role of advance care planning in end of life care?
Models of advance care planning, such as Respecting Choices® in the USA, and Respecting Patient Choices® in Australia, have shown that a coordinated, systematic, patient-centred approach to advance care planning by trained non-medical facilitators can improve outcomes for patients[xxx]^{,[xxxi],[xxxii]}. This includes ensuring that patients’ wishes are known and respected. They have been shown to be sustainable over time[xxxiii]. In a recent randomised controlled trial of advance care planning in elderly medical inpatients, end of life care was improved from both the perspective of the patient, and that of the surviving family members¹⁴. The patients who received advance care planning were also more likely to be satisfied with their overall care whilst in hospital. None of the patients who received advance care planning ended up dying in the ICU. Furthermore, the advance care planning reduced the risk of stress, anxiety and depression in surviving relatives¹⁴.
It is also increasingly recognised that the demands on the Medical Emergency Teams (MET) can be reduced by getting the ward doctors to have advance care planning discussions with their patients or their families and then make decisions on which patients would benefit from a MET call and which patients should receive symptom control if they deteriorate.
Advance care planning has also been used effectively in aged care homes to identify and respect the end of life care wishes of elderly residents and improve the level of satisfaction of the residents and their families with regard to the quality of care that they receive[xxxiv]. This study showed a dramatic reduction in the likelihood that elderly residents would be transferred to hospital to die (from 46% to 18%, p < 0.001). The potential in redirecting resources towards those who would benefit from, and would prefer, the treatment, is huge.
Thus, having started this journey ten years ago, when questioning how to avoid needless suffering in the ICU, we have come a long way but there is much still to be done.
Summary
It is ethically and legally important, when providing care to all our patients, to respect their autonomy and dignity and to always act in their best interests and avoid doing harm. Advance care planning is an essential to achieving this by giving patients the opportunity to tell us what they would want us to do if they became seriously unwell and could no longer communicate their wishes.
There is also an increasing focus on improving end of life care, including the prevention of suffering, making earlier and wiser end of life decisions about the appropriateness of treatment and improving communication with patients and families.