I Advance Care Planning: Promise and Challenge
Planning for End-of-Life Care: Where Are We and How Did We Get Here?
Susana Lauraine McCune Leah Rogne
SETTING THE STAGE
Unsteady on his feet but determined to water a young tree on a day in early summer, a 93-year-old North Dakota farmer with mild to moderate dementia tripped and fell in his garden. He managed to pull himself up and, with his wife's help, got back to the house. The next day he was driving his golf cart around the farm, making plans with his wife and daughter for how to cut back on the large garden, telling his family which irises and lilies to keep and which he could no longer care for. The next day he began a sharp decline in his motor abilities and soon could no longer dress himself.
After being hospitalized overnight for observation and a brain scan, he and his daughter shared a soda while waiting for the test results. The neurologist came in and told them that there was a subdural hematoma—a bleed in his brain—that was causing his sharp decline, perhaps caused by the fall. By this time, the farmer could no longer talk.
Scenario 1 (continued)
The doctor told the daughter that they could bore a hole in his skull and suck out the blood or, if that did not work, they could open up his cranium and remove the clot. The daughter told him her father was clear about his wishes, and he would not want this kind of procedure.
When the daughter brought her father to the hospital, she had a large manila envelope containing information on his wishes about his dying and death. The envelope was kept by the front door of the house on a bookshelf, and all the family knew what it was and where it was. One of the documents had been signed in 1963—46 years before the accident. There was a form donating his body to the state medical school. One form was his living will. Another document gave his daughter the right to make decisions for him if he could no longer speak for himself. The documents were the result of numerous conversations over the years between the farmer, his wife, and their children over the years about their desires about end of life (EOL).
Though grieving at the news that her father's death would come sooner than she'd expected, the daughter had complete confidence in what he would have wanted and complete confidence in her right—and her responsibility—to act on his behalf. The farmer went home to the farm and died 9 days later under the care of hospice, 30 feet from the spot where he had been born.
A woman in her mid-50s experienced symptoms that indicated a possible serious illness. Her symptoms included severe, unrelenting vertigo, nausea, vomiting, disorientation, diminished vision and cognition, and shortness of breath. Her primary care physician referred her to several specialists. Since a hospital admission had been discussed as a possibility, to each doctor appointment she brought with her a file folder labeled “Advance Directives.”
When she checked in for her doctor appointments she said, “I brought my advance directives with me, and I'd like to have them added to my chart.” Receptionists looked at her with a blank stare and responded, “I don't deal with that. You'll have to take that up with the nurse or the doctor.”
When called from the waiting room to the examining room, she said to the medical professional, “I brought with me my advance directives. I'd like to have them added to my chart.” They gave her either a quizzical look or a blank stare and replied, “I don't know what that is.” Or asked, “What is that?”
She explained, “They are documents I have completed to direct my medical care in case I am not able to advocate for myself. They include naming a health care proxy to make medical care decisions for me if I can't make them myself. I'd like to have a copy added to my chart.” The medical professionals typically responded, “I don't deal with that. You should talk about it with the doctor.”
When the physician entered the exam room, the patient said, “I brought a copy of my advance directives. I'd like to have them added to my chart.” One physician said, “Oh, that is a good idea. I am so glad you have thought about that. I wish more people would do this. It is so important.” Three other physicians paused and said, “Give those to the nurse.”
None of the physicians initiated a discussion with her about the specifics of her advance directives (ADs) or her treatment goals for EOL care.
During her appointment with one of the physicians, she initiated a conversation about her ADs. She said, “You have come highly recommended to me and I would like to discuss designating you as my primary physician of record, so I'd like to discuss my advance directives with you.”
The physician replied, “Let me take a look at your paperwork.” The physician flipped through the directives, which included a health care proxy, and specific directions in a living will, including instructions to allow natural death (AND), do not resuscitate (DNR), and do not intubate (DNI).
The physician said, “I cannot honor these requests. They are against my moral and ethical beliefs, and against my duty as a physician. I believe life is sacred and is to be preserved.” At this point the visit ended and she left.
Working on a presentation to her fellow students on EOL planning and taking seriously what she had read about the failure of ADs to satisfy the need that had been identified 20 years earlier, a graduate student passed out a copy of the new Physician Orders for Life-Sustaining Treatment (POLST) form to her Sociology of Death class. She asked that all the students in the class—most of them in their early twenties—fill them out on the spot and get them signed by their physicians. Puzzled, her young classmates hesitated.
POLST is a doctor's order that is designed for someone who has a life-threatening illness and for whom it would not be surprising if they were dead within a year—entirely inappropriate for a healthy 20-something college student. But in light of the sharp criticism ADs have received in recent years, this earnest graduate student saw the new POLST as the solution for all.
ADVANCE DIRECTIVES AND ADVANCE CARE PLANNING: WHERE ARE WE NOW?
Twenty years after the passage of the federal Patient Self-Determination Act (PSDA), intended to provide persons with a way to express their wishes about the care they would want at EOL, we are faced with EOL care situations such as those reported in the three scenarios above. Some EOL scenarios go well, with families, patients, and their physicians having been in continuous conversation with one another to share their values about how the patients see the EOL unfolding for them and making sure that their desires are documented. At the same time, some patients find it difficult to engage their providers in having a conversation or even understanding the purpose of a request to address EOL, decision making, and care. There is also widespread misunderstanding of how to document one's wishes and what is the appropriate path to protect oneself from unwanted treatment in a life-threatening situation.
Despite decades of institutional mandates such as the PSDA, only a minority of adults have expressed their wishes about EOL care in writing. Wenger, Shugarman, and Wilkinson (2008) reported only 18% to 36% of adults have completed ADs. Members of the public receive contradictory and confusing information—if they receive any information at all—about how to document their wishes. Those who do prepare documents often do not share them with their families or tell their families or closest friends that they even have the documents. EOL planning documents may be stored in a safety deposit box and remain unknown to health care providers or families who would need to access the information at the time of crisis. People do not want to talk about death.
In this chapter, we discuss the promise of ADs and the challenges that proponents of planning have faced in their attempts to create widespread change in how we plan for EOL care. We start with a definition of ADs and ACP and follow with a brief history of the social currents that led to and shaped the development of ADs. We discuss the ethical foundations of ADs and outline some of the benefits of and challenges in using ADs to provide for satisfactory EOL decision making. We end with a discussion of the new
focus on ACP and on ongoing communication and community involvement as key mechanisms to transform how we plan for EOL care.