family with critical care patient

Supporting End-of-Life Conversations for Those Who Cannot Speak

Human frailty and mortality are a fact of life. Living through the COVID-19 pandemic over the last year with daily updates in the news on the number of critically ill and dying patients in our hospitals has just served as a painful reminder of that fact of life.

End-of-life conversations are fraught with a mix of emotions. For the patient, family members and friends, any talk about an impending death is too often avoided due to a combination of fear and denial. Modern medicine and the decline in multi-generational households have turned what had been a natural and expected event in the cycle of life into an unexpected aberration. As life expectancy has increased, we have pushed thinking about our mortality into the dark and by extension our discomfort when confronted by either our own death or that of someone close to us. This discomfort creates a barrier to full expression of our physical and emotional needs.

From the perspective of the individual who will be dying it translates into being scared to ask the questions about a dire prognosis. On the one hand we want to be told the truth, but on other as patients we are scared to directly ask “Am I going to die?” When family and friends come and ask how we are doing, we are more likely to respond, “I am doing Ok” rather than “I am dying.”

From the perspective of family and friends, there is also a reticence to directly reference the inevitability of a patient’s impending death. Part of that reticence is due to being uncertain whether the patient is aware of the dire prognosis, but it is also in part due to general discomfort in any direct discussion of death. We just don’t know what to say if someone told us they were in pain or that they were dying.

The avoidance of conversations about death and dying may reduce the discomfort of the moment but it will inevitably lead to regret that we did not say what needed to be said. Failing to confront an impending death can lead to a patient’s inability to be involved in medical decision making about clinical interventions and the use of life-sustaining interventions. To support patients and their families deal with a terminal prognosis, clinicians must overcome their own fears of raising a difficult subject and also support their patients and families so that they can cope and manage the end-of-life crisis they are facing. Whether the patient is in a facility or at home, support from psychological counselors and pastoral care providers can reduce the anxiety about the impending death and provide guidance on how to make the most of end-of-life conversations.

Patients, whose medical condition renders them unable to speak or write, face the challenges we have just described and the added challenge of not being able to express themselves. The patient with ALS should have the same right to participate in medical decision making and end-of-life conversations as a patient with an end stage cancer. Saying goodbye is hard enough when you can speak, we should not make it harder for those who cannot speak. Providing access of augmentative and alternative communication tools can enable patients to not only actively participate in their care but to also participate in end-of-life conversations with friends and loved ones.

Voxello’s noddle-chat communication tablet has been designed to support the wide range of communication needs of hospitalized patients including their ability to engage in end-of-life conversations. Being able to let one’s personality shine through even when using a speech-generating device can go a long way to breaking the ice needed to overcome our reticence to speak about death and dying.  Noddle-chat can be quickly implemented, so regardless of how imminent death is, the patient can engage with family at the end of life. For the patient being able to communicate reduces some of the stress of facing death and for the family, it eliminates the regrets of not having been able to truly say goodbye.

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