He was SO mad at me. He was sitting in a chair at the foot of the bed facing his wife. He was wearing his United States veteran baseball hat and his well worn cane was leaning up against his chair. “Can’t you just wait for our son to get here?!” He was mad at me and he was pleading with me.
His wife, Helen, would not make eye contact with him and would not take her eyes off of mine. She was pleading with with me too. In short, staccato like sentences she said to me, “I’m ready. to go. He knows. I’m dying. I don’t want. my son. to see me this way. I’m ready. to go.”
Helen had come in to the emergency department just about an hour prior. She was in respiratory distress. She has end stage COPD (chronic obstructive pulmonary disease). She was recently discharged from the hospital to a nursing facility. At the time of discharge from the hospital she filled out a MOLST form (Medical Orders for Life Sustaining Treatment). She very explicitly stated that she is DNR (do not resuscitate), DNI (do not intubate), and does not want positive pressure ventilation (something like BIPAP or CPAP). This morning at the nursing facility she couldn’t breath. The facility called 911 and she was sent to me by ambulance.
On arrival her respiratory rate was in the high 40s. Your respiratory rate right now is probably 12. She was sitting as straight up as her elderly body would allow, leaning slightly forward on her arms. She was cachectic, uncomfortable, and struggling for air. We call this the tripod position- if you know someone with asthma, watch their body position when they are having trouble breathing. She was using every possible accessory muscle- the muscles in your body that help expand and contract your thoracic cavity when your lungs need extra help. You could see how hard she was working by simply looking at her sternocleidomastoid, a muscle on the side of your neck. Her oxygen saturation on room air was 72%. When we placed her on a nasal cannula at 6L it was 83%. In a patient with COPD it usually hovers around 90-92%.
As you will hear me say again and again, the mantra of emergency medicine is simple- A, B, C. Airway, Breathing, Circulation. Start with the airway. Anyone who looked the way Helen did on arrival would be emergently intubated. And if not, she would at the very least be put on BIPAP (bilevel positive airway pressure). Among other things, BIPAP can increase ventilation, increase oxygenation, decrease airway resistance, and hopefully off put the need for a more invasive procedure, like intubation. Helen was working too hard to breath, she was getting tired. She was not receiving enough oxygen. If her sats didn’t raise she’d likely arrest, and without resuscitation, she’d die.
But Helen didn’t want any of this. She was acutely aware of what was going on. She had the capacity to make her own medical decisions. She had explicitly put them in writing. She ultimately agreed to allow us to place her on BIPAP, temporarily, but now she refused to be admitted to the hospital.
Her gray hair was matted from sweat, but even in this extremis you could tell that it had been cut in a stylish chin length bob. Her blue eyes were piercing.
And Helen’s husband wasn’t ready to say good-bye.
The BIPAP was a temporizing measure. If Helen didn’t want to be admitted to the hospital that meant she would go back to her nursing home and die. They don’t take people with positive pressure ventilation. And Helen knew that. She was ready.
Her husband was acutely aware of this as well. “You can’t just send her out there to die. You can’t do that. You are a doctor. You just can’t do that.” Tears were welling in his eyes. “I need my son. I need him for me. I don’t know what I’m going to do. We’ve been married for 61 years.”
Tears were welling in my eyes, too. I don’t want to do that. I don’t want to send Helen off to a nursing home to die. But I also have to do what she wants. He begged and pleaded with me to just keep her in the hospital until her son arrives. He lives in Arizona. He won’t be here until late tomorrow. I wish I could. I really with I could, I tell him. But I have to abide by Helen’s wishes. “I understand your pain, I understand your wishes. If I were you I would want the same thing. I would want my family here. And as much as it hurts me, Helen has made her wishes explicit.”
With the help of my social worker, case manager, nurse, and in conjunction with Helen, her husband, and her by phone her son, we all came to an agreement. Helen would be admitted to the hospital on hospice. She took off her BIPAP mask. She was to be admitted to the hospital with comfort measures only. Her husband knew this meant she may die, and may die very soon. But he agreed to it. We took her off all of the beeping monitors. We were no longer checking her oxygen saturation, we weren’t monitoring her pulse or blood pressure. I did give her some medication for her anxiety and pain.
Just before she was to be transported to the floor, about seven hours into her emergency department stay, I went back into her room. I sat down next to her husband and put my hand on his shoulder. “I’m so sorry for what you’re going through,” was all I could say. I was again fighting back tears. I stood up and walked to Helen. I looked directly into her blue eyes and gave her hand a squeeze. She squeezed back. I didn’t have any words.
The following day I came in to work and opened her chart. Helen passed away peacefully that night. Her husband had gone home to change his clothes. She passed after he left. Her son was to arrive in a few hours and would drive his father back to the hospital to pick up her things.