Advance Care Planning Matters: View Sample Cases

Patient Profile - "Jasmine"

Jasmine is a 55-year-old woman who married later in life and finds her marriage on shaky ground. She has no children and estranged siblings. She is closest to a small group of coworkers in the office where she has worked for 20 years. Over the past few years, Jasmine has told her closest friends repeatedly that she would never want to be kept alive if she were very disabled and could not care for herself. Jasmine has high blood pressure that is poorly controlled. Unfortunately, she sustains a big bleed inside her brain. After surgery and a period of intensive care, her doctors say that if she survives to leave the hospital, she will likely never be able to care for herself again.

No - Advance Care Planning

Jasmine did not discuss her end-of-life care preferences with her doctor or her husband. She has no advance directive. When she has the brain bleed, the doctors in the hospital explain her clinical situation and ask her husband what she would want. He does not know. He feels guilty about that and the fact that they had grown apart. Jasmine's friends tell her husband that she said she would not want to be kept alive if she would be left profoundly disabled, but Jasmine’s husband is too overwhelmed to accept what they are saying. Instead, he instructs the doctors to do what is needed to preserve Jasmine’s life. Jasmine has a feeding tube placed and is transferred in a barely awake state to a nursing home for continued care.

Yes - Advance Care Planning Completed    

In the context of a discussion about blood pressure control, Jasmine's primary care physician introduces advance care planning. He asks about her goals for medical care and whom she would want to make medical decisions if she were unable. She talks about the conversations she had with her friends and that she values independence and disdains needing the help of others. The physician asks her to document these values in an advance directive that is then recorded in her medical record. He also recommends she discuss her views with her husband, whom she chooses to designate as her health care agent. When the doctors discuss treatment plans with Jasmine's husband after her brain bleed, they tell him that her advance directive provides guidance on how to proceed. They explain that Jasmine's prognosis is too poor to prolong life because medical treatments could never achieve her goals. While it is not the choice he would have made on his own, her husband feels comfortable following the doctor's advice, which is guided by her explicit preferences. He is relieved not to have to make the decision alone. Jasmine's friends, deeply saddened by the turn of events, validate the decision.


Patient Profile - "DeShawn"

DeShawn had a good job and marriage, both of which disintegrated because of his drinking. After a series of missed opportunities, he ended up living in a park where he found a peer group that accepted his alcohol use. Two men, Mike and Ike, became his close friends and the three spent much time discussing politics, sports and playing cards. After witnessing an accident, DeShawn and Ike had a long discussion about medical care outcomes. DeShawn explained that life is precious to him and that he would want everything done to try to preserve his life if there were any chance at all that he could continue to watch TV and listen to music. One night DeShawn fell and struck his head. When transported to the hospital the next morning, he is found to have a severe brain injury. After three weeks of treatment, DeShawn has had minimal recovery and continues to require a ventilator to breath for him. The doctors say that his chance of recovering to be interactive with the outside world is close to zero.

No - Advance Care Planning

DeShawn had not had a regular source of medical care for many years. During a few sporadic ER visits, no one ever asked him about advance care planning. When he is hospitalized for head trauma, the medical team is unable to identify any next of kin. They query law enforcement and even send a volunteer to the park where he was injured, but come up empty. After three weeks of searching, no one can be found to speak for DeShawn, and he is considered an "unrepresented person without decision making capacity" for whom a medical decision must be made by others. Because DeShawn's prognosis for recovery is exceedingly poor, the doctors recommend that treatment be aimed at comfort and that the ventilator be stopped to permit a comfortable death. The committee of individuals charged with assisting in decision making for unrepresented persons agrees that the doctors' recommendation falls in the ethically appropriate range. The ventilator is stopped and DeShawn dies comfortably.

Yes - Advance Care Planning Completed    

DeShawn receives no routine medical care, but he has several ER visits for trauma and alcohol related reasons. During an ER visit, a nurse notes that DeShawn is at risk for becoming unrepresented and incapable of making his own medical decisions. She asks him to complete an advance directive and he agrees, listing Mike and Ike as his health care agents. He does not complete the goals of care part of the document, but he and a notary sign the advance directive and a copy is maintained in the medical record. When DeShawn is hospitalized after the fall, Ike is contacted. Ike explains that DeShawn expressed strongly that he wanted to be kept alive if there was even a tiny chance of returning to a condition in which he could watch TV and communicate. When the doctors share Mike’s poor prognosis, Ike asked if there any chance at all that DeShawn could recover to the point of being able to enjoy watching TV. The doctors indicated that a precise prognosis at this stage is difficult, but after a longer observation period they might have more clarity. They also note that if DeShawn worsened, then his goals could never be met. DeShawn receives a tracheostomy and G-tube is placed. A POLST with a DNR order was signed and Mike was transferred to a Long Term Acute Care Hospital where Ike can visit and monitor his progress.


Patient Profile - "Alice"

Alice is an 84-year-old woman with oxygen-dependent emphysema from 60 years of smoking. She has three adult daughters who have never gotten along. Alice develops pneumonia and is slow to improve on the ventilator in the ICU. She now is developing kidney failure and the doctors think that she is unlikely to survive the hospitalization.

No - Advance Care Planning

Alice never discussed end of life issues with her doctors. Her pulmonologist gave her an advance directive, but she never returned it. The ICU doctors discuss prognosis with the daughters and recommend Alice be transitioned to comfort care because they think that Alice is very unlikely to survive the hospitalization. Although there is a tiny chance that she could recover to some degree, she would almost certainly be permanently dependent on a ventilator to breath. The daughters cannot come to an agreement regarding what treatment their mother would want. No decision is made and Alice dies in the ICU a month later.

Yes - Advance Care Planning Completed    

Alice's pulmonologist discusses with Alice that she is in the last phase of her life and that decisions about her medical care might be needed. They discuss her goals for medical treatment. Alice was on a ventilator a few years ago and hated it. She explains that she would not want to be ventilator dependent for a long period of time. She wishes her children would get along with each other, and wants to make all three serve as her joint decision maker. Her doctor advises her to designate a lead decision maker to avoid conflict, but Alice is unwavering and completes her advance directive with all three daughters named. When a decision is needed regarding the ventilator, the daughters are poised to disagree, but the doctors explain that Alice’s preference to avoid long-term ventilator use is noted in her advance directive and will be followed. The daughters instead can focus on next steps.


Patient Profile - "Alice"

Alice is an 84-year-old woman with oxygen-dependent emphysema from 60 years of smoking. She has three adult daughters who have never gotten along. Alice develops pneumonia and is slow to improve on the ventilator in the ICU. She now is developing kidney failure and the doctors think that she is unlikely to survive the hospitalization.

No - Advance Care Planning

Alice never discussed end of life issues with her doctors. Her pulmonologist gave her an advance directive, but she never returned it. The ICU doctors discuss prognosis with the daughters and recommend Alice be transitioned to comfort care because they think that Alice is very unlikely to survive the hospitalization. Although there is a tiny chance that she could recover to some degree, she would almost certainly be permanently dependent on a ventilator to breath. The daughters cannot come to an agreement regarding what treatment their mother would want. No decision is made and Alice dies in the ICU a month later.

Yes - Advance Care Planning Completed    

Alice's pulmonologist discusses with Alice that she is in the last phase of her life and that decisions about her medical care might be needed. They discuss her goals for medical treatment. Alice was on a ventilator a few years ago and hated it. She explains that she would not want to be ventilator dependent for a long period of time. She wishes her children would get along with each other, and wants to make all three serve as her joint decision maker. Her doctor advises her to designate a lead decision maker to avoid conflict, but Alice is unwavering and completes her advance directive with all three daughters named. When a decision is needed regarding the ventilator, the daughters are poised to disagree, but the doctors explain that Alice’s preference to avoid long-term ventilator use is noted in her advance directive and will be followed. The daughters instead can focus on next steps.