We’re Bad at Death. Can We Talk?
New research has highlighted the fact that end of life care in the US is a growing need that needs to be addressed so that every citizen receives the care they need. Patients make an average of 29 doctor’s visits in their final months, with the final month being particularly key. Around 50% of Medicare patients go to the ER in their final month, with one-third being admitted to the intensive care unit and one-fifth being taken for surgery. Medicare’s funding allocation for patients in the last stages of their lives is approximately six times that of other patients, with end of life care accounting for a quarter of the entire Medicare budget. The situation has been left unchanged for the past 30 years, leading to questions over what can be done to improve the situation. Despite conventional thinking, providing more intensive end of life care does not improve outcomes. Research has found that there are two ways of improving patients’ final weeks, and those are to have conversations about end of life care much earlier, and to offer more palliative care services. Advance planning reduces emotional trauma, increases chances of patient survival in hospital, reduces intensive care use and increases quality of life. Palliative care use has risen 150% in hosptials across the US, and the resulting change has made Americans the least likely to die in hospital from cancer. However, only 56% of smaller hospitals feature palliative care services, despite the growing evidence that such services are in great need. Ethnic and racial minorities are most likely to die in hospital, and are less likely to receive palliative care or use a hospice. Seriously ill patients do not receive the care they need because their illnesses – such as chronic obstructive pulmonary disease or congestive heart failure – are not perceived as being life-threatening or worthy of palliative care. These slower diseases can end with organ failure, with care mostly being given as and when needed in response to issues, rather than proactively tackling future problems.

Her last conversation should not have been with me.

I’d just arrived for the night shift in the I.C.U. when her breathing quickened. I didn’t know much about the patient, and the little I did know wasn’t good: She had cancer. Her lungs were filled with fluid. As her breathing deteriorated and her oxygen levels plunged, I searched the chart for her wishes in an emergency. Nothing.

I explained to her how rapidly her condition had worsened and asked if she’d discussed intubation and mechanical ventilation. She shook her head; she didn’t think it would get so bad so fast. Together we called her husband, who had just left for the evening, but there was no answer.

“If we do it, when will I…” she paused. “When will I wake up?”

I hesitated. It was as likely as not that she wouldn’t. I explained that we never leave patients intubated longer than necessary, but when people were as sick as she was it was impossible to know when — or even if — they would be extubated.

“O.K.,” she said. “Do it.”

There are, no doubt, differing opinions on what constitutes a good death. But this, inarguably, was not one.