The following three clinical cases offer an illustration of both the challenges and potential value of using completed ADs as a basis for medical decision making. In each case, the extent to which the family or community had a conversation about values and goals is critical to the outcome.
Case 1: Alan
Alan was a 50-year-old palliative care physician who understood the importance of planning ahead for a health care crisis. Alan had a large community of friends and a loving relationship with his wife. He completed an AD clearly stating his wish not to be resuscitated or intubated under any circumstances. Alan's appointed agent was a long-time friend who knew him and his values well. He discussed his definition of quality of life with her and made clear that anything short of his current quality of life would not be acceptable to him. He purposefully chose not to have his wife of 20 years be his agent because he knew it would be emotionally difficult for her to carry out his wishes. He was concerned that she would likely provide more medical care than he would want.
Alan was on vacation when he leaned against a railing that gave way, and he fell 15 feet to the hard ground. Alan knew immediately that he had a serious injury because he couldn't feel anything below his shoulders and couldn't move his arms or legs. As his wife rushed to his side, he looked at her and said goodbye, expecting that he would die from what would be determined to be cervical 5–6 spinal cord trauma that would leave him a functional cervical level-4 tetraplegic (totally paralyzed from the shoulders down). Alan was air ambulanced to the regional trauma center, where emergency surgery was performed to stabilize his spine. He regained consciousness and initially regained some function in his arms allowing for full extension of his elbows and limited use of his fingers. The doctors told him he could likely become “independent in transfers” and mobile in a power wheelchair. He discussed these issues with his wife and his agent friend, and he said that he was willing to see what life would be like “scooting around” in a motorized wheelchair, though he never formally changed his AD.
Case 1: Alan (continued)
After a second spine stabilizing surgery, Alan's mental status markedly declined. He lost all motor function from his neck down, and post surgery he was unable to be weaned off the ventilator, so he became ventilator dependent. He was unable to reliably speak to communicate his wishes. Exhaustive evaluation suggested his mental and motor changes were due to a rare demyelinating process that might resolve over several months. His agent decided to maintain all medical care but at the same time to honor his instruction not to accept resuscitation. She hoped to give Alan time to “awaken,” so that he could decide for himself whether he wanted to continue his current level of care focusing on recovery or to transition to comfort care. His wife and many of his friends felt that Alan would not find his current quality of life acceptable and wanted to shift him to comfort care. The agent, supported by several other close friends of Alan's, was adamant that she couldn't make an irreversible decision that would certainly lead to Alan's death. She reasoned that he still had the chance to regain capacity to make his own decision and found it especially difficult after Alan had said he was willing to see what life would be like when scooting around in a motorized wheelchair.
Six weeks after his initial surgery, Alan was still hospitalized, he had a tracheostomy placed to maintain long-term, ventilatory support, and discharge plans were being made for him to be transferred to a longterm acute care facility. Alan's palliative care colleagues were distressed that he was receiving care totally at odds with his “lived story” despite all of his advance planning.
Alan's case illustrates several common challenges of even the most well thought out AD.
■ His AD could not anticipate the actual medical events that occurred in his medical crisis, or the way in which he became ventilator dependent (uncertainty; competing autonomy of patient's wishes and surgical team).
■ His agent believed Alan “changed his mind” during discussions after the accident (agent uncertainty about the appropriateness of the AD instructions due to changed circumstances).
■ Later, Alan's agent was unwilling to make a life-and-death decision with the possibility of his cognitive recovery, however unlikely, even knowing that Alan's wife disagreed with this choice (competing autonomies among AD, agent, and Alan's wife). At this point in Alan's story, he is living a life that is inconsistent with his “lived history” and his well-documented AD without any likelihood of a change in the care plan in the near future. Alan's AD has not influenced the medical care he has received or the outcomes of care.
Case 2: Florence
Florence was a lively 91-year-old woman who had been blessed with an active mind and a body healthy enough to allow her to live independently and pursue her love of music. She was the leader of two weekly flute groups; she had season subscriptions to the symphony and ballet, a large circle of friends, and a granddaughter who visited her regularly. She also had a son in California who was her legal next of kin. Florence had verbally designated him as her surrogate decision maker.
Florence was resistant to filling out an AD or to discussing what she wanted in case of a medical crisis because she thought it was depressing, and she wanted to focus on the joy of living. She did eventually share with her son that she didn't want to live on machines, be in an ICU, or live in a nursing home. At her son's insistence, Florence finally signed an AD documenting these wishes.
Then it happened that Florence had a large left-middle cerebral artery stroke that initially left her unconscious, though not needing ICU care. Her son specified that she should be designated as do not resuscitate (DNR) and do not intubate (DNI) patient, consistent with her AD. As the stroke evolved, Florence awoke with total expressive aphasia, dense hemiplegia, and severe dysphagia with secondary aspiration pneumonia on antibiotics. She was able to nod or blink in response to simple questions but otherwise needed total care and had a feeding tube placed due to her high aspiration risk. The level of care that Florence needed could only be provided in an institutional setting. There she received a gastrostomy tube for nutrition. Given her resistance to talking about “death,” her son asked that all medical discussions be with him and his daughter excluding his mother. Florence's son readily acknowledged that she would find her new quality of life a “purgatory,” but as her son, he was also unable to “let her starve or die from an infection that could easily be treated with antibiotics.” The neurology team told the son that Florence might improve over time, though it could take 6 to 12 weeks before they would know her new baseline.
Florence's case also illustrates common challenges in implementing an AD; particularly, the often unclear and distressing decisions that the
Case 3: Betty
Betty was an 84-year-old woman who several years before had experienced a blood clot to her brain causing an embolic stroke from atrial fibrillation resulting in mild executive function diminishment. At that time, she and her mildly demented husband of 60 years decided to accept an offer to live in an apartment in the home of their daughter and sonin-law. Betty and her husband felt they had done a good job of financial and health care planning, including creating ADs, through a reputable estate planning attorney in Arizona while they were still living actively in that community. Betty's daughter, a retired trust executive, and her son-in-law, a palliative care physician, were designated agents for both parents. In addition, over the years that they lived together, Betty's sonin-law had initiated conversations about what would constitute quality of life for Betty and her husband, attempting to clarify their values and goals of care.
In the fall of her 84th year, Betty was found by her husband on the floor of their bathroom unresponsive. He called his son-in-law at work and was instructed to call 911. Betty's daughter was out of town on business and was expected to return late that evening. Upon evaluation in the emergency room (ER), Betty was found to have a dissecting, ascending aortic aneurism including her left carotid artery. In consultation with her son-in-law, the surgeon said that given the extent of the aneurism,
(continued) Case 3: Betty (continued)
the fact that she was unconscious when found, her prior stroke history, her age, and the preferences she had documented in her signed Physicians Orders for Life-Sustaining Treatment or POLST (a one-page document used in Washington State by people with advanced illness to inform all care providers of the person's care goals), surgery was not recommended. Betty woke up and was transferred to the ICU for close observation, with medical treatment including IV infusion to reduce her blood pressure and pain medication. Betty's daughter returned home at midnight and decided to get a few hours sleep before going to the hospital to see her mother. At 2:30 a.m., the daughter received a call from her very distraught mother wanting to know when she could come home.
The next morning Betty's daughter and husband arrived at the ICU early and requested a meeting with a palliative care physician. Because Betty's prognosis was poor, the daughter contacted her brothers and the grandchildren to advise them that they should come soon. The palliative care doctor talked to Betty, her daughter, and husband compassionately and honestly about the certainty of her prognosis: Betty's life was at an end; she had minutes to perhaps 2 weeks left to live. Betty responded with a mix of terror and acceptance. Her daughter asked the doctor about planning to bring her mother home on hospice care. The doctor explained that they wanted to keep Betty for a few days to see if she could be stabilized a bit more before sending her home.
The daughter and her brothers were fully on board with Betty's wishes, spelled out clearly in her ADs, that when her time came she did not want to be in the hospital, and furthermore that she wanted to be cared for at home. Even in light of the eminently terminal prognosis, the doctor's eyes reflected her fear of taking Betty off the intravenous medications. She recommended that Betty stay in the ICU through the weekend. It was Friday and Betty's daughter knew that it would be challenging to arrange a hospice intake over the weekend. Besides, she had clearly heard the doctor say that her mother could die in 10 minutes or at most 2 weeks.
The daughter turned to her mother and asked, “Do you understand what the doctor is telling you?” Betty replied fearfully, “I think she's saying I'm going to die.” Her daughter said gently, “Yes, and she is saying that they would like you to stay in the hospital a few more days to become more stable before going home. That also means that there is a possibility that you may not leave the hospital.” Betty's shocked reply was, “You mean I might die here? I want to go home!” Even so, the doctor
Betty's case illustrates that even a well-planned and well-communicated AD is not without its challenges. It also helps us to see that Betty's willingness to have the conversation about what constituted quality of life for her allowed her agent to feel certainty in being a strong advocate for Betty's goals.
■ Betty's goals were communicated consistently over time and they were wholly congruent with her “lived history” (desired outcome was achieved; individual and family autonomy issues were addressed in ongoing conversations before the crisis).
■ Betty's AD was clear to her and made clear to her family. She had stated that she did not want to be in the hospital for any reason. Given the crisis that landed her in the ER and then the ICU, it was less clear to the medical team because it was at odds with the immediacy of her medical condition (medical team uncertainty; competing autonomies and goals).
■ Betty trusted her appointed agents, her daughter and son-in-law, to carry out her wishes and was willing to have ongoing, meaningful discussions with them about what constituted quality of life. This allowed her agents to advocate clearly and assertively on her behalf when the crisis occurred (interdependence in community; reduced uncertainty; clarity of goals).
ADs are a good beginning to EOLcare planning, especially those that address one's quality of life before asking about medical treatments. However, if we are to transform the lived experience of the last days of life in this culture,
we must find a way to facilitate the conversations that will breathe life into ADs, bringing clarity to the decision-making process for the family and agent and ultimately the professional care team.
Perhaps as an example we should look to the radical shift in birthing in the 1970s that transformed childbirth from a medical event to a life-cycle family event. Birthing plans became the norm and are actively in use today. A birth plan spells out the detailed personal values that define a quality birth—who will be present, where the birth will ideally take place, what procedures will or will not add to the quality of the experience, and what is the bottom-line quality-of-life experience if a less-than-optimal situation should occur. Birthing plans are also created in community and in conversation with the provider, the family, and the doula.
There are two great bookend mysteries in life—birth and death. Doesn't it make sense to plan for, and talk about, how we want to live the last days of our life as robustly as we plan for birthing life into this world? This would allow all affected parties to be prepared for and be respectful of the individual's values and goals. When we have these conversations with a loved one, we don't focus on death and dying. We focus instead on how the person wants to live, because that is really what is being decided. We offer here some questions that we have found help facilitate this conversation:
■ In your life, have you had experience being with people at the EOL?
● What was that like for you?
● What was your role in that circumstance?
■ How would you describe what makes your life worth living?
● What if you were no longer able to do ?
● What would be a quality of life that would be acceptable?
■ Who and what are the people, places, things, and activities that are important to you?
■ Where do you imagine yourself being in the last days of your life?
● What would that look like?
● Who would be with you?
● What would you be doing?
In our family, these conversations are approached casually; they are interspersed with other conversation. Often the topic comes up naturally in asking about someone's life experiences, or when a friend or family member is ill or has died, or when we have seen something in a movie that stirs the conversation. The trick is to examine our own discomfort in having the conversation and begin to accept that mortality, birth and death, is indeed the common denominator for us all. Perhaps it is a subject that should be moved from taboo topic to table talk.
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& P. Silverman (Eds.), Living with dying: A comprehensive resource for healthcare practitioners (pp. 102–127). New York, NY: Columbia University Press.
Farber, A., & Farber, S. (2006). A respectful death model: Difficult conversations at the end of life. In R. Katz & T. Johnson (Eds.), When professionals weep: Emotional and countertransference responses in end-of-life care (pp. 221–236). New York, NY: Routledge.
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