No-one wants to be a patient in an intensive care unit (ICU). But if you ever do require intensive care, would you or your family like to be better informed about the harms and benefits of intensive treatment?
And would having better information about what may happen during the ICU stay and after help you make informed decisions, especially if you are no longer in a position to make decisions?
A recently released review1 of 13 medical studies published over the past two decades investigated just that.
The review involved 6194 older patients or relatives from Australia, the USA, Canada and France. The researchers found that asking people about their preferences for intensive care was rare (1 per cent to 53.6 per cent).
Less than a third (1 per cent to 34.7 per cent) were asked about ‘goals of treatment’ – whether they wanted everything at all costs in the hope of getting back to normal and how much suffering they would endure to do so, or whether they would want treatment focused mostly on their comfort. Understanding of fears or involvement in decision-making were also low.
Phrases such as ‘dissatisfaction’ with end-of-life care or ‘discordance’ with clinicians about the benefits of ICU procedures were common.
Some patients felt that ‘too much treatment’ causes unacceptable suffering; or when treatments were provided despite the likelihood of improving a patient’s quality of life; or if they were given to extend life for people in a coma with little to no chance of recovery.
Two messages were clear. Firstly, people are aware of the concept of ‘futility’ – providing treatment that doesn’t change what happens to patients in either the short or long term – even if they call it something else.
Secondly, seniors have strong opinions about such treatments but are not often given the opportunity to express them. Some of the reasons suggested for this lack of consultation included patients' cognitive impairment or advanced age, doctors’ doubts about prognosis, paternalistic attitudes towards decision-making, and generally a difference of opinion between health professionals and members of the community regarding what is realistically achievable in the ICU.
The review concluded that what was thought to be inappropriate treatments in ICU for families and patients were usually based on social circumstances and compassionate grounds, and not necessarily confined to the medical aspects.
Clinicians are urged to place themselves in the patient and family's shoes, and proactively involve them in reconciling these differences of opinion. In short, by asking patients and their loved ones what they would or wouldn’t want, based on the best and worst case outcomes.
The theme of poor or insufficient communication between clinicians and the patient emerged repeatedly; unsurprisingly, this is not a new challenge2. Sometimes families and patients themselves have not been told about prognosis or impending death, so despite the presence of frailty and multiple chronic conditions, when death comes, it can seem to be a sudden and unexpected event. There is ongoing debate about how far prognostic disclosure should go. We believe honest, clear and timely communication of expectations is an ethical obligation of clinicians3.
Quality end of life care encompasses many aspects: from the technical competencies of procedural staff to clinicians’ taking time to engage with empathy and compassion, to enabling the death to occur at a place and time of the patient’s (or their family’s) choosing.
Older adults with life limiting illness and informal bereaved caregivers of older Australian patients have told us before about their end of life priorities4. They need some sense of control over what happens near the end of their life. They have made it clear that they want to be involved in treatment decisions made about them. And they need clinicians to adhere to their wishes.
A recent New Zealand study5 confirmed that the personal traits and behaviours of ICU clinical staff affected how families felt about the care provided for their loved ones nearing death from a critical illness. Suggestions for improvement were regular and sensitive communication with families of dying patients, more contact with physicians, and flexibility in allowing larger number of visitors by the bedside towards the end.
While clinicians are trained to save lives and cure disease, there is a point where 'if they can’t save their lives they should save their deaths'. Allowing a dignified death rather than prolonging the dying process could reduce unnecessary suffering as well as avoid giving families false hope and pathological grief. The concept of ‘inappropriateness’, in a system where ‘everything’ is both provided by default, and is an expectation of both society and medical culture, needs to be recognised and discussed. Treatments that do not impact on survival time or improve quality of life6 are not in seniors’ best interests, often prevent the achievement of a ‘good’ death and erode the sustainability of the health system. As one family member recently told an ICU clinician during a meeting to talk about realistic expectations for their loved one, “Sometimes, doctor, there are things worse than death.”
The often default process of ‘decisions made about me without me’ is only slowly changing. Empowering seniors and their families to challenge clinicians and ask about treatment burdens and realistic expectations, as well as encouraging open and honest conversation about dying, will only improve the care they receive.
Associate Professor Magnolia Cardona, Gold Coast Hospital and Health Service and the Institute for Evidence-Based Healthcare, Faculty of Health Sciences and Medicine, Bond University.
Nurse Ebony Lewis, School of Public Health and Community Medicine, The University of New South Wales, Australia.
Dr Alex Psirides, Intensive Care Unit, Wellington Regional Hospital in New Zealand.
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