Prescribing the end-of-life conversation
Is saving the life of a terminal patient always the best medicine?
LIKE MOST doctors, I was a young resident, fresh out of medical school, when I had my first experience with the American way of mistreating the dying.
Taras Skripchenko was a frail, bed-bound 78-year-old man with inoperable lung cancer who was admitted to my service during my first year of residency training. Skripchenko was too confused to have a lucid conversation and lacked family members to guide his decision-making. His oncologists hadn’t spoken with him earlier in the course of his disease about what was important to him, so he was a “full code.” He had no “do not resuscitate” order on file. In short, we were ready to do everything possible to keep him alive.
“Code Blue! Code Blue!”
A nurse had checked on his pulse only to realize that he did not have one. I ran to his room and found the team already performing CPR. I clumsily jammed my hands into a pair of latex gloves and joined the ritual, relieving one of the nurses doing chest compressions, which is far more physically demanding — and brutal — than what is portrayed on television. My clasped hands pressed hard against Skripchenko’s frail chest, and all I could hear and feel were the cracking of his ribs with practically each compression. The rhythmic pumping eerily emitted a coarse, Velcro-like sound.
Skripchenko’s heart was eventually stabilized, and we transferred him to the ICU. By the following morning he had a tube or catheter in almost every part of his body, for a grand total of eight plastic intrusions, including an endotracheal tube (lungs), two central intravenous lines (veins), an arterial line, a nasogastric tube (stomach), a foley catheter (bladder), a rectal trumpet tube, and a tube placed in the sac of his heart to drain fluid. Taras was “fixed.”
Doctors like to tackle problems and fix them. And it is truly amazing what modern medicine has achieved in a relatively brief span of time. Can’t breathe? We can fix that with breathing machines. Have an infection in the blood? We can fix that with powerful antibiotics. Have some fluid around the heart? We can even fix that by drawing it off with a needle or cutting a hole into the surrounding sac.
The tougher issue, however, is when to recognize that the small fixes do not change the larger picture, to recognize that fixing specific problems may not fix the whole patient.
This is medicine’s version of not seeing the forest for the trees. We doctors had repaired Skripchenko’s heart, but what benefit was this to him? Could he go on living in a meaningful way? Doctors always search for the next fix, but we need to know when to use — or not use — our growing tool kit of fixes. If no one asks the critically ill patient whether or not he or she would even want these risky procedures to only marginal benefit, if any, then doctors just keep on trying more interventions.
Skripchenko’s heart stopped three more times, and, miraculously, the ICU team brought him back each time. Still, not surprisingly, a patient in the late stages of terminal advanced cancer succumbed to his disease. Whatever the next new fix is, nature eventually takes her inexorable course. Taras Skripchenko died 48 hours after the initial Code Blue, never having regained consciousness.
End-of-life care in America is broken at every level. A recent Institute of Medicine report paints a damning picture of end-of-life care in this country: It needs to be entirely overhauled. We live in a city with some of the best hospitals in the world, the “Wall Street” of American health care. I work in one of the best hospitals on earth, and I’ve watched patients die in ways that are protracted, dehumanizing, and far more painful than they needed to be.
I have heard patients and families demand that we “do everything,” to prolong their life, but in many cases they, unfortunately, have little idea what “everything” means because no one has explained their options clearly. Sometimes, patients and families don’t want to face death. But more often, the problem lies with the medical profession. The principal reason we have gotten death so wrong is because doctors fail to have meaningful discussions with patients and their families about how to live life’s final chapter.
There are many reasons for this. We aren’t trained to have these discussions, to explain in simple terms what CPR means, and what it entails (broken ribs for the frail), or how difficult it is for a patient with a terminal illness to be weaned off a breathing machine. When we do try to explain, we often leave patients and families confused and frightened that they won’t be well cared for. They feel like we have abandoned them. They often feel responsible for their own uncertainty, not realizing that their confusion reflects our inability to communicate effectively.
Americans receive some of the best health care money can buy; they also experience some of the worst deaths in the developed world. By most accounts, the American transformation of death from a natural process occurring at home to a medicalized event taking place outside of the home has been disastrous. The health care system is teeming with brilliant scientists, but there is a dearth of effective communicators and advocates.
One toxic side effect of the extraordinary progress that has been made in medical technology is the assault of medical interventions at the very end of life. The first necessary step toward a remedy lies with a return to the oldest tool in medicine’s proverbial black bag: talking with patients about their wishes for how they want to live in their remaining time.
If the health care system slows the technological juggernaut enough for doctors to explain fully to seriously ill patients the options for medical care as the end of life approaches — including the choice to forgo countless interventions in advanced illness, if that is indeed what is desired — then patients can truly choose how to spend their final days.
Among the questions that all of us, as future patients, need to consider and discuss with family, close friends, and our doctors are the following:
■ What kinds of things are important to you in your life?
■ If you were not able to do the activities you enjoy, are there any medical treatments that would be too much?
■ What fears do you have about getting sick or medical care?
■ Do you have any spiritual, religious, philosophical, or cultural beliefs that guide you when you make medical decisions?
Some people will leave end-of-life decisions to their personal physicians and other experts, without questioning them. Some will choose to pursue any possible remedy, no matter how extreme, painful, or experimental, in an effort to stave off the ravages of disease, the trauma of serious accident or injury, or just the gentle unwinding of life functions that accompanies old age. Others will opt for hospice care to ensure comfort, a sense of community, and access to family and friends as the end approaches.
The success of this essential conversation about end-of-life care lies not in the individual path chosen but rather in the active and fully informed participation of the patient and family members. In other words, these discussions empower patients to receive whatever end-of-life medical care they wish.
But sometimes words are not enough. An additional reason why patients are mistreated at the end of life is that words can’t explain what we, as health professionals, have seen. I’ve found that for some patients, no amount of simple explanation is as powerful as actual images. Video images, which can supplement verbal discussions, have been used successfully to educate patients about their medical choices near the end of life. More importantly, when doctors fail to ask patients about their preferences, patients can empower themselves with videos that provide them the knowledge they need to be at the center of and in control of their health care.
What people need most on this journey is not the promise of the next new technology, but rather a guide to help them navigate this dark forest in which we all will undoubtedly find ourselves. People need doctors who are honest enough and capable of explaining new technologies with the accompanying risks and benefits, and discussing whether those technologies would truly benefit them. When patients with a serious illness have a chance to understand their options, many make very different choices and do not end up like Taras Skripchenko.
Watch: Dr. Volandes and his book, “The Conversation”
Dr. Angelo E. Volandes is on faculty at Harvard Medical School and Massachusetts General Hospital. His book, “The Conversation: A Revolutionary Plan for End-of-Life Care,” is being released by Bloomsbury Press this week.