When Death Is Certain

Irene was a frail elderly woman draped in an oversized turquoise cashmere sweater. Her bright pink lipstick barely concealed her blue lips, which pursed tightly together when she spoke. Her portable oxygen tank rested on the intensive care unit (ICU) floor, gently cradled by her black Gucci bag with a bright yellow inhaler poking out a side pocket. Nasal cannula oxygen tubing looped over her ears with prongs tucked gently in her nose. We stood together in the ICU at her mother's bedside. “I'm the palliative care doctor and I'm here to see your mom.” I said. “The ICU team asked me to come. You're mom is in a coma on a life support machine.” I explained. The patient was a 91-year-old woman with end-stage dementia from a nearby nursing home where she had lived for the past 3 years, unable to feed herself and oblivious to her surroundings and visitors. She had been admitted to the hospital several times in the past year for urinary tract infections and dehydration. Three days ago, she had a cardiac arrest, and was brought by ambulance to the emergency department where she endured a prolonged and massive resuscitative effort before regaining a heart rhythm after 44 minutes of cardiopulmonary resuscitation (CPR) and pacemaker insertion. “I can't live without my mother. Everyone wants their mother to live forever. She was the youngest of nine children. I'm an only child. What am I going to do without her?” Irene sobbed. She told me that despite being a legal secretary for an estate planning law firm, her mother wanted no part of writing a living will or completing a health care proxy form. Irene became more short of breath and had to sit. She asked in her matter of fact way what decisions had to be made now. We talked about protecting her mother from further resuscitative efforts should her heart stop again by writing a do-not-resuscitate (DNR) order. Since there was no chance of recovery, we also discussed the option of withdrawing the respirator. Irene called her daughter and priest who both came to the ICU within 2 hours. Following a bedside prayer including the administration of Last Rites, Irene requested that the ventilator and pacemaker be discontinued. The patient died 32 minutes later amidst the monitors, beeps, and alarms in ICU Room 524: an overly cluttered but sterile four-bed room.

Mr. S. was a new consult called in early Sunday morning. He was a 78-year-old male with end-stage Parkinson's disease, multiple strokes, hypertension, heart failure, and pneumonia. He had been living with his elderly wife until 3 weeks ago when he was admitted to the hospital for pneumonia. The family made a decision not to put Mr. S. on a respirator should his respiratory function deteriorate and a do-not-intubate (DNI) order was written by the intern. Sunday morning at 2:25 am a Rapid Response Code was called for “altered mental status” and a blood pressure reading of 72/45 mm Hg. The family was called by a covering night float intern at 2:35 am for direction as to what to do next. During this frantic middle of the night telephone call, the patient's elderly wife advised the intern not to move her husband to the ICU and to “just make him comfortable.” The intern wrote a DNR order to protect the patient from further aggressive care and ordered 1 liter of normal saline to be given intravenously. The patient became more short of breath and the hypotension persisted. Upon my arrival, the patient was using accessory muscles to gasp in his 42 breaths per minute. Despite the 100% non-rebreathing oxygen mask that smothered his face, his oxygen saturation was only 72%. He lay in bed unresponsive and dying. His nurse held a small cup filled with six colorful pills. I asked her what she was planning to give Mr. S. and she competently rattled off the names of the pills like ingredients for a chocolate chip cookie recipe: Lipitor^®, aspirin, Synthroid®, Nexium^®, potassium and Dilantin. She informed me that due to the patient's hypotension, she would hold his morning Lopressor^® dose. I attempted to conceal my frustration and explain to the nurse that Mr. S. was actively dying. Not only would he aspirate the pills in her cup; these medications serve no purpose during dying. I further explained that Mr. S. needed a stat dose of morphine 2 mg IVP for his terminal dyspnea. The nurse reluctantly gave Mr. S. the morphine, but only after taking his temperature and another blood pressure reading: It was 62/40 mm Hg.

Mr. O. was a 102-year-old retired pharmacist who lived in Great Neck with his son, a dentist. Mr. O. was bedbound, moderately demented, and cared for by a 24-hour private-hire home health aide. Mr. O developed fever and shortness of breath at home and was brought to the emergency department by ambulance where he was intubated for severe pneumonia. He was treated in the ICU for a week and transferred to the Palliative Care Unit on a ventilator for end-of-life care. Although frail, he was successfully weaned off the ventilator and was close to his baseline functional status. The patient's private attending encouraged an aggressive approach and advised the son to refuse a DNR order should the patient deteriorate. Despite numerous discussions between the patient's attending of record and the palliative care team, the attending refused to allow a DNR order to be written or discussed with the patient's son. The attending of record called numerous subspecialty consultations including neurology, cardiology, pulmonary, renal, gastroenterology and plastic surgery (for decubiti debridement). The patient developed respiratory failure 1 week after extubationn and was reintubated and transferred back to the ICU. The patient received a tracheostomy and percutaneous endoscopic gastrostomy (PEG) feeding tube and was eventually transferred to the Respiratory Care Unit. He remained in the Respiratory Care Unit for 2 months where he developed pneumonia and three moon-crater–sized sacral decubiti. During his fourth ICU readmission on hospital day 72, Mr. O. died. He succumbed to a final bout of sepsis. The patient's attending of record and son wanted “everything done.” And so it was.

Mrs. A. was an 89-year-old female living at home with her 12-hour Medicaid aide. The remaining hours of care were provided by her three daughters in alternating shifts. Mrs. A was bedbound with severe vascular disease, diabetes, end-stage heart failure, and severe dementia. She was admitted to the hospital for gangrene of the right leg. Despite 4 weeks of intravenous antibiotics, the gangrenous leg was not improving and a vascular surgeon recommended an above-the-knee amputation, despite the high risk of intraoperative and postoperative death. The daughters could not decide if surgery would be worthwhile and were uncertain of the clinical benefit should the patient survive the operation. Although Mrs. A. enjoyed being hand fed by her home health aides, she failed a recent speech and swallow test that resulted in the discontinuation of hand feeding. A tube was inserted through her nose into her stomach for tube feeding. Several more weeks passed, and a palliative care consult was called by the nurse. The palliative care team reviewed the risks and benefits of the proposed surgery with the daughters and offered alternatives to surgery that included wound care, pain control, and home hospice care. The daughters decided to take their mother home with home hospice care. Since Mrs. A.'s only pleasure in life was eating, the feeding tube was removed and the gift of hand feeding was returned to her. Elizabeth, the oldest daughter, asked why hospice care had not been brought up a month earlier?

On my way out of the hospital, I walk through the Medical ICU and am greeted by the intensivist who says “I have six names for you guys to see on Monday”. As I drive home this rainy Friday night to prepare a rather pathetic Sabbath dinner for my family, I am plagued by cases like these from a typical week on the palliative care consult service. I have known the physicians caring for these patients for nearly two decades and would refer my own family members to them. They are good doctors. How is it, that care rendered when cure is no longer possible, is so bad? Why is non beneficial treatment offered? Why do six subspecialty consultant notes immediately precede my death note?

Does one really need their Lipitor® on the day of death?

I cannot submit bills for the countless hours of conversations I had this week with families about goals of care because these conversations were not “face-to-face” with the patient as is required for payment by Medicare (99356 billing code for prolonged face-to-face discussion with patient). My patients are generally obtunded or dying and cannot participate in these lengthy discussions regarding their care. If physicians actually got paid to have these difficult and time consuming goals of care discussions with family members and surrogates, would they? Instead, physicians are financially incentivized to perform more tests and write more notes. If payment was bundled for each hospitalization, thereby eliminating financial incentives for piecemeal work, would care of hospitalized terminally ill patients improve? Might we then provide appropriate palliative care to patients—when death is certain?