Late one evening, an ICU physician calls a family to say Dad’s breathing rate had slowed to such an extent that he did not believe Dad would survive the night without life support. This seasoned doctor added that he had never seen patients come back from this condition on their own. Although Dad had do not resuscitate orders and his children had agreed with his wishes to forego extraordinary measures to prolong life, they were now faced with a difficult dilemma. Nothing prepares people for the excruciating decision to let a loved one go. Moreover, the decision had already been made, in concert with their father’s wishes in writing and by general consensus about his quality of life. Consensus had to be painfully revisited. Ultimately, the family agreed to let nature take its course — no intervention, simply comfort measures; they relayed that message to the doctor with instructions to call as the end drew near so they could be at the bedside. An anguished anxious night followed. Yet the phone did not ring. Morning dawned. The patient survived the night and awoke to eat breakfast, recovered, and went to a rehabilitation facility to learn to walk again.
On ICU rounds led by an experienced intensive care doctor, the team pauses outside the patient’s glass door with end-stage cancer. It had become clear that the prognosis for this gentleman was poor, and there was no hope for survival. At such times, making the patient comfortable is key. ICU physicians and nurses understand this and use medications to ease suffering. As the team walked away, the chief instructed the junior doctors entrusted with carrying out his orders, “Keep him euphoric.”
I write this as a caregiver, patient educator, and clinical researcher.
The coronavirus pandemic has shone a spotlight on intensive care units (ICUs). Due to the rapid and continued increase in critical illness from COVID-19 infection, discussions about capacity and specialized equipment have become commonplace. Terms such as ventilators, ECMO, PPE, emergency use authorization, and proning have entered into the lingua franca.
Critical care happens in the ambulance, the emergency department, and across the hospital. Ultimately the sickest and most severely injured patients end up in the ICU, or their medical providers are assisted virtually by trained clinicians (e-ICU). Before the pandemic, there were nearly 100,000 ICU beds across the U.S. COVID-19 has necessitated the creation of de facto ICUs, in repurposed operating rooms, in tents, and on ships. Non-critical care medical personnel have been deployed to meet the demand to render care for acutely ill patients.
If a hospital experience is overwhelming, anxiety-producing, and confusing, the ICU is more so by orders of magnitude. Entering through the doors, one is greeted by otherworldly sounds and sights– beeping and buzzing machines to monitor and support the body’s vital functions, nurses with eyes on their patients, attentive to every incremental change revealed by the monitors, and assorted medical professionals managing the myriad needs of precarious patients, alert to the possibility of an impending life-threatening downturn. Often, the ICU is the last stop for patients when treatment is unsuccessful or discontinued. Supporting end of life with compassion and comfort measures often falls to ICU medical professionals. This sadness is felt and permeates the ambiance.
Severe infection, organ failure, traumatic injury, and acute breathing crises are common reasons for ICU admission, as are postoperative open heart and brain surgery and organ transplants. Also common, patients undergo treatments and procedures that cause further problems. Potent medications, invasive monitoring, life support devices, and heavy sedation offer hope of mitigating disease progression but may engender serious harm. Ventilators provide life support by breathing for the patient, but are a fertile opportunity for the bacteria that cause pneumonia, and many patients once on a ventilator cannot wean off. The paradox is that the very device that enables life may precipitate mortality. Another pitfall of an ICU episode is the toll on the body’. Patients experience deconditioning and functional loss. It is not unusual for post ICU patients to require services to relearn walking and many motor and cognitive activities. There may be persistent effects of PTSD.
Bearing witness to a loved one on life support, hooked up to machines, lines, and drains protruding from the body can be painful and upsetting. In the COVID era, more distressing still is the inability to be with the loved one at their time of need. Whether the family is present or communicating by phone or video applications, liaising between the patient and the care team is important.
Following are suggestions to improve the ICU experience:
Have documents ready. Prepare a comprehensive set of documents: advance directives, living will, MOLST (medical orders for life-sustaining treatment) stating what the patient might or might not want to guide the ICU team in planning goals of care.
Understand the jargon. Much of the language used by medical professionals is inscrutable to the general public. Look up definitions and explanations of conditions, procedures, tests, and medications from trustworthy websites such as Mayo Clinic, Cleveland Clinic, WebMD. “Intensive Care – a guide for patients and relatives” may be useful.
Identify who’s in charge. The patient may have many medical and surgical consultants, each with investment in a different organ system. Figuring out who is ultimately the main decision-maker and possibly main contact will be key to getting information and for addressing concerns.
Appoint a spokesperson. To streamline communication, it is optimal to have one representative to gather updates, relay information, and coordinate with various members of the ICU team.
Value the nurse. Nurses are the conduit to…everything. Yes, there are times when it will be imperative to connect with the doctors. However, the nurse is the interface with every hospital service and staff person in the ICU. As the health care professional at the bedside they will know the patient best and have the big picture for schedules, tests, procedures, medications, and visiting consultants.
Prepare for discharge. Few patients go directly home. Possibilities include step-down or general medical/surgical unit, and rehabilitation or skilled nursing facilities. If discharge is to another facility, perform due diligence to ensure that you will be satisfied with the care. Whether in-person or reading reviews, evaluate for cleanliness, staff ratios, availability of therapy services, and what measures are taken to prevent Covid-19 transmission.
If you’re permitted to visit. Besides providing comfort, the nurse can let you know if there are other ways to be helpful, such as assisting at mealtimes or with mobilization and exercises. Delirium is a common complication seen in the ICU and can have serious aftereffects. Inform the care team if there have been previous episodes and orient the patient as to time and place and with assistive devices such as glasses and hearing aids.
Practice forbearance. These are difficult times. Healthcare workers make tremendous sacrifices to care for patients; they are stressed, overwhelmed, overworked, and sadly many have lost colleagues in the pandemic. Normal routines have disappeared; patients are dying at unprecedented rates. All this takes a toll. Please be understanding and kind.
Sara L. Merwin is the co-author of The Informed Patient: A Complete Guide to a Hospital Stay.
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