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From doctor to worried family member: a call for more humanized care in the ICU

Dr. Zsuzsa Csik
Physician
March 5, 2023
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Recently I had the unfortunate experience of changing my perspective from being a doctor to becoming a worried family member.

My father spent five weeks in a hospital with a severe infection. Visiting hours were restricted to one hour per day – the aftermath of COVID – and getting information about his therapy, prognosis, etc., was nearly impossible.

Thankfully, my father recovered and was discharged. He was more than happy to go home, but at the same time, he was traumatized. He was often treated disrespectfully. He felt he had no right to ask questions. His need for painkillers was ignored sometimes for hours. The time spent in the hospital left a mark on him.

I hope this is an extreme example, but let’s be honest; similar things happen now and then. They may happen unintendedly, but they happen and affect our patients.

My father suffered unnecessarily during his hospital stay. Nurses and doctors didn’t treat him as a person with feelings or fears but often saw him as a task on the to-do list. They dehumanized him.

What does dehumanization mean?

The word sounds puzzling or even malicious.

Per definition, dehumanization means to regard, represent, or treat someone as less than human or to deprive them of human qualities or attributes.

Do we really do that to our patients? It may sound harsh, but yes, we all do it sometimes.

How are patients dehumanized?

In medical care, dehumanization can take different forms, like,

  • stripping patients of their identity by not calling them by their names but by their room numbers or illnesses
  • controlling their bodies with machines and medicaments
  • putting them into an artificial coma
  • performing all kinds of procedures while unconscious
  • ignoring their privacy by entering and exiting their rooms unannounced without asking for permission
  • restricting their connection with their foremost support, their families

Most of these attitudes are part of standard policies and practices.

Other forms of dehumanization are the products of human nature.

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Dehumanizing may be a human act of self-protection 

In the ICU, hardship, misfortune, pain, and misery are part of daily life. While working under circumstances the majority can’t even imagine, one must show extreme empathy when facing critically ill patients with uncertain outcomes, end-of-life decisions, etc.

At the same time, one must carry out painful, unpleasant procedures causing suffering with their own hands.

Self-distancing could be considered a normal defense mechanism.

Several factors can intensify it, such as:

  • Cultural differences between patient/family and health care professionals
  • Altered consciousness of the patient
  • Working under time pressure
  • Moral and ethical conflicts in the caring team
  • Burnout of the caregiver
  • Toxic working environments
  • Fragmented care delivery

All these reasons are legitimate. Still, we mustn’t forget that disrespectful behavior and dehumanization are nonphysical and preventable harm. Moreover, dehumanization affects our patients’ lives as much in the long and short term.

The consequences of dehumanization 

The direct consequences of dehumanization can significantly influence the primary outcome.

Some examples are:

  • Loss of trust in the medical team
  • Decreased motivation to actively participate in treatment
  • Disorientation or delirium through misinterpreting reality
  • Physical distress
  • Neglect because of lack of communication between patient and staff

They can result in suboptimal medical treatment with possibly longer hospitalization and more complications.

Families also suffer from dehumanization as they may feel guilty not being able to support, encourage or advocate for their loved ones. Consequently, they can experience symptoms of depression or anxiety.

The aftermath of the ICU 

Once having endured the critical phase and being discharged, survivors must face the bitter reality of returning to “normal life” on their own. Unfortunately, most systems fail to rehabilitate or even orientate these patients.

Survivors might suffer from PTSD or PICS (post-intensive care syndrome) with all its physical and mental debilitations. In addition, they possibly face unemployment and the fear of becoming a burden to their families.

Surviving critical illness remains the primary goal, but one can’t deny that the treatment must make sense in the greater context of life after ICU.

How does humanizing intensive care help?

Patient-centered care is not only a goal, but it provides us with the means to improve the outcomes of our critically ill patients.

It is a recent topic, but a growing body of evidence supports its significance. Intensivists all over the globe have started to recognize the weight of dehumanization and advocate for change.

Patient-centered care is gaining influence, at least on the theoretical level. A Spanish research group, HUCI (Humanizando los Cuidados Intensivos), put it into practice. Their English manual includes seven strategic lines to help humanize care in the ICU.

The seven strategies are:

  1. Open-door ICU: presence and involvement of family members
  2. Optimizing communication within the multidisciplinary team and between the patient, family, and the health care team
  3. Prioritizing patients’ physical and psychological well-being
  4. Physician well-being, burnout-prevention
  5. Support after intensive care for survivors and their families
  6. Coexistence of end-of-life care with intensive care
  7. Humanized infrastructure, such as improved architectural and structural elements

What’s the future?

Now, with the possibilities of modern medicine, we can reduce the mortality of life-threatening diseases in ways we couldn’t have dreamed of earlier.

Let’s remember, in the meantime, that our patients are not merely organs to medicate, replace or repair. They are feeling and thinking human beings who are likely living their worst nightmares in our hands. So, let’s treat them with respect and compassion.

The goal of intensive care therapy should be, as the authors of a related article say:

“… balancing the lifesaving effects of technology with a greater emphasis on the individual patient and respect for human dignity.”

Zsuzsa Csik is an anesthesiologist in Brazil.

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