"BREATHE! BREATHE!" he cried, a look of terror in his eyes.

This memory, along with a profound sense of helplessness and regret at being unable to relieve his distress in his final hours, still haunts the patient's sister 6 months later. Since the day her 45-year-old younger brother died.

She'd been his protector. His defender. From the time he was diagnosed with cancer at age 27 until the day he died from the long-term toxicities of the treatments that prolonged his life, she'd fought for him. Yet even though she was a nurse, she was helpless to relieve his distress when it mattered most.

On the last day of his life, as he succumbed to the respiratory failure he'd been fighting for 2 weeks, he was unresponsive most of the time. But he awoke suddenly from his unresponsive state to cry for help when he couldn't breathe.

Her greatest regret, and the one that still haunts her, was that it took so long to get him relief.

If only they were back home, where they were in control. Where she could quickly intervene to give him the oxygen, nebulizer, lorazepam, and hydromorphone that she knew he needed. But their interventions for controlling his symptoms, developed over 6 years of living together and her availability to him 24/7, were taken away during yet another hospitalization. Here in the hospital, she was dependent on the nurses and respiratory therapists (RTs), whose ability to quickly alleviate his distress was hampered by policies, protocols, and workload issues. They needed more than 20 minutes to accomplish what she could have done in 2.

She pushed the call bell. A few minutes passed. It seemed like hours.

At home, she would have given him a nebulizer as soon as his distress started. But here on the intermediate care pulmonary unit, she had to ask the nurse for the nebulizer. And the nurse, in turn, had to page respiratory therapy because hospital policy required an RT to deliver nebulizer treatments.

Fifteen minutes after she asked for help, he still hadn't gotten the nebulizer or anything else to relieve his distress, and the nurse was nowhere to be seen. He was so weak he couldn't talk, but his eyes said it all. Terror.

Finally she summoned her courage and marched over to the nurse manager, demanding that she do something. A few minutes later, the RT finally arrived to give him a nebulizer treatment and assess his oxygenation status. Soon after, a palliative care physician and nurse arrived and initiated interventions that finally provided relief.

Twelve hours later, at peace and comfortable, he died.

Confronting breathlessness

Dyspnea is a common, even universal, symptom for those in the final stages of pulmonary disease. And over half of patients with other life-limiting disorders such as heart failure and certain neuromuscular disorders experience episodes of breathlessness, despite treatments to control the underlying disease process.1

As nurses, we often encounter patients with this symptom, and we know to act quickly-after all, interventions to support respiration are the first steps in the ABCs of emergency response. But when caring for a dying patient where comfort, not rescue, is the goal, we're often less prepared to intervene. This and other barriers to rapid relief of distress can have serious consequences for the surviving loved ones, whose grief may be complicated and prolonged and whose memories of these important final hours will forever be scarred by their loved one's distress.

Rapid symptom relief is key

According to a recent systematic review of the top priorities in end-of-life care, patients rated symptom relief in the top five ranked elements of care.2 An integrative review confirms these findings, highlighting the importance of rapid and effective symptom relief as extremely important to both patients and families. However, patients and families were consistently dissatisfied with this aspect of care.3

Nurses are often frustrated by institutional barriers when trying to provide rapid symptom relief for dying patients. One healthcare system has developed an approach to help overcome these barriers called Code Comfort.4 Designed for patients who've chosen do-not-resuscitate status, the Code Comfort policy includes an order set for management of acute signs and symptoms such as pain, dyspnea, anxiety, and agitation. Following standing orders, the patient's nurse is authorized to implement interventions for moderate symptoms immediately. For unrelieved moderate symptoms or severe symptoms, the nurse activates the Code Comfort team, which is similar to rapid response teams for emergency conditions. Personnel responding to a Code Comfort alert may include specially prepared palliative care physicians, nurses, RTs, and chaplains. Guided by assessment and intervention algorithms, responders work quickly to provide rapid symptom relief and support the patient, family, and often the patient's nurse, who's likely also distressed by this time.4

Other strategies

Even in facilities that lack such a protocol, nurses can initiate the following strategies to prevent and relieve the distress of breathlessness for dying patients and support those who love them.

* Enlist the help of the patient and loved ones to rapidly assess and identify a treatment approach. What do they think is going on? Is this a symptom the patient has had before? What helps when this happens?

* Allow the patient and family to take action for distressing symptoms. Breathlessness becomes worse with anxiety, which is worsened by lack of control, a consequence of hospitalization. What actions could they take themselves, based on how they deal with the symptom at home?

* Act rapidly. Streamline the systems to get appropriate medications to patients experiencing symptom distress. Policies that impede rapid treatment, such as requiring nurses to page an RT to administer as-needed nebulizers, can harm patients and their families.

* Audit your unit's time to treatment for distressing symptoms. How much time lapses between when a patient requests an analgesic, nebulizer, or antiemetic and when it was administered? What caused delays? How can these processes be streamlined and barriers eliminated?

* Ensure that someone stays in the room. Patient abandonment during distress is a horrible, helpless feeling. Presence, ongoing monitoring, emotional support, and nonpharmacologic treatments such as repositioning, use of a fan, and distraction may all be implemented while medications are being prepared and new orders requested. But for this to happen, someone needs to stay with the patient.

Symptom distress is an emergency for a patient who's dying. Rapid time to treatment is the goal.

To promote comfort for the patient.

To promote healing for families who will remember every moment of those final hours.

If this were your loved one, isn't that what you'd want?

REFERENCES