“Death Panels” or Prudent Planning?

Aug 19, 2009 | 2 comments

Last week, the Senate Finance Committee dropped end-of-life care conversations from the health care bill, ducking Sarah Palin’s Facebook charge of government “death panels.” Medicare won’t be covering a useful patient-doctor talk that could avert much heartache when grandma is hospitalized.

The provision would have paid medical providers for the time they spend advising patients about end-of-life care. These conversations help people decide on and provide clear instructions to family and medical professionals about issues such as resuscitation, whether to use tube feeding or intravenous hydration when certified to be in a terminal condition, and who will make healthcare decisions if they are unable to speak for themselves. They also serve to educate people about options such as palliative or hospice care to alleviate suffering.

This is a very valuable conversation to have. Unfortunately, death is taboo for most families to discuss honestly (as is sex). Even with advance medical directives in place, when the time comes to put the patient’s wishes into action, real life gets messy.

My 82-year-old father-in-law Norm died in April 2009 after a seven-week medical journey that started with a broken hip from a fall and ended with death from pneumonia. He had three acute care hospitalizations and two stints at a rehabilitation hospital. But Norm’s healthcare directives changed with each visit.

Norm was lucky to be alive after his third open-heart surgery at the age of 70. Told by his doctor at the time to get his affairs in order, he had prepared well. He went into the hospital with medical directives and a do-not-resuscitate order (DNR) in place.

The hip replacement surgery was a success, but as with his previous surgery, it took him a long time to come out of the effects of anesthesia. For three days, he talked about the family’s Viking history (odd, since the family is Jewish), had flashbacks to the Korean War, and saw politician John Edwards rearranging the furniture in his room. With the hallucinations, he couldn’t get out of bed to start walking as soon as the doctors wanted, and he developed pneumonia in his right lung a week after the surgery.

Norm came very close to dying from pneumonia that first week, but the doctors heroically pulled out the stops to get the mucus out of his lungs. He improved to the point that he went to a rehabilitation hospital after three weeks to work on the functional skills he needed to go home.

But within four days, he was back in the emergency room. He’d had an allergic reaction that caused swelling in his hands, arms and legs. While he didn’t have a fever, he was persistently cold even though his room was incredibly warm. He became as incoherent as he had been after the surgery. His skin was peeling as if he was burned and he developed a bladder infection.

This time, Norm didn’t want the DNR implemented. He thought the doctors wouldn’t try as hard to make him better, but they did – even though they were not able to identify the source of the allergic reaction. After eight days, he was transferred back to the rehabilitation hospital to keep learning the skills to walk and function at home.

He seemed to be making great progress, but after eight days, he choked on applesauce and became very short of breath. He was taken again to the emergency room. The pneumonia was back, this time pervasive in both lungs. It turned out Norm had “silent aspiration,” which meant he was literally inhaling anything he ate or drank.

When the ER doctor asked about a DNR order, the family was at a loss. Norm, who was again incoherent, indicated he didn’t want the DNR. Myra, his wife of almost 60 years, was the named decision maker for Norm. She was stressed and tired from being constantly by his side during the month and a half of his hospitalizations. She looked to my husband and me to help decide what to do. We decided to stick with his original wishes and Norm was given the wristband that indicated do not resuscitate.

A pulmonologist came into the ER. He said Norm had put up a good fight, but that his body was tired and broken. He said the best they could do at this point was keep him comfortable, and let nature take its course. He recommended Norm be admitted under palliative care, where he would be kept comfortable, but not “fixed.”

I called my husband’s brother who lived on the East Coast and told him it was time to make arrangements to come to Albuquerque. The end was near. He had seen his father right after the surgery, but it had been six weeks of steady deterioration since then that he had not witnessed.

When my husband’s brother arrived the next day, he would not accept “doing nothing.” He asked for antibiotics to fight the infection, for a feeding tube to be inserted, for respiratory therapy to be administered. After palliative care was explained to him, he insisted that the doctor in charge do things to “make him better,” even though it may have actually prolonged suffering. His insistence put my husband and me in an uncomfortable position, as we had accepted Norm’s coming death and knew more intervention was futile.

Norm was incoherent for a majority of this last hospitalization. Toward the end, when he started muttering, “It hurts, it hurts,” we asked for morphine to relieve the pain. Norm died peacefully after two days, with his family gathered around him.

Without a family conversation before a crisis hits, advance medical directives can become just words on a piece of paper that no one pays attention to. Don’t let this happen to you. Try to speak, and listen, with your head as well as your heart.

A Good Goodbye