by Craig Klugman, Ph.D.
This week’s Thursday night medical TV was all about end of life decision-making and delved into the questions of how much aggressive treatment is too much, what happens when physicians lose clinical distance, and who makes decisions for patients.
On Chicago Med (Season 2, Episode 18), a patient with Alzheimer’s is admitted to the ED with a fever and chills. She has pneumonia and has for several days, only being sent to the hospital that day by her long-term care facility. The patient is Dr. Bella Rowen, Halstead’s former mentor and administrator Goodwin’s former colleague (from her nursing days). As the patient is brought in, a nurse says “No advance directive, no family, and the surrogate just passed away, so it’s going to be our call.” Halstead is emotionally invested in his mentor and takes over decision-making for her care. She is frail and does not remember him. When Rowen codes, Halstead pushes CPR even though, as his colleagues tell him, he will break all of her ribs and only cause suffering. He resuscitates and intubates her. We are told that she will never get off the vent. When her kidneys fail, he orders dialysis. Goodwin talks to him and says that such measures will lead Rowen to live the rest of her days on machines, bedridden with sores, and open to infections. Goodwin tells Halstead that the woman he knew was gone and forcing this patient to live would not bring his mentor back.
One of the major ethical issues raised in this case is whether, in fact, Halstead should have been making decisions for the patient. In part, he made the decisions because he bullied and dismissed anyone who suggested a less aggressive approach to treatment, or even allowing natural death. Rowen is an example of the unrepresented or unbefriended patient. Without clearly written instructions, a living surrogate decision-maker, or family, we have to ask who makes the decision? Most states have a statutory hierarchy of decision-makers that begins with family and then ends with close friend, clergy, or other person. In Illinois, the last person on the list is executor of the estate. As a prominent physician, Rowen most likely had a last will and testament with an appointed executor. This episode makes no mention of that. In such cases, it is usual that social work searches for any family or friends, and that step also did not happen. If a patient is truly unrepresented, then the next step is a court-appointed guardian. The problem is that the process to have one appointed is lengthy. If there is not a family member willing to serve in that capacity, the court will appoint a professional guardian who is likely burdened with many appointees and expects payment for her/his work. Plus, the professional guardian will not know the patient or her values.
In essence, as Thaddeus Pope pointed out in the New England Journal of Medicine, usually the attending physician makes the decisions in these, often in consultation with other colleagues. Some hospitals may have a policy that an ethics consult is called. In Texas, a clergy member is supposed to be called to make decisions (ideally the patient’s clergy member), though few are willing to serve if the patient was not a congregant. In some places, hospitals are coming together to create unrepresented patient policies—a meeting to create a regional policy is occurring in Chicago this month. Clearly this episode demonstrates the need for regional policies and even state laws to assist in surrogate decision-making for unrepresented patients: The ad hoc methods used now unfairly leave decisions in the treating physician’s hands.
Ideally, a decision-maker considers the patient’s values and best interest (in that order). Ultimately, this is what happens on Chicago Med. Halstead watches a video of a commencement address given by Rowen, where she tells the graduating MDs, “Treat the patient, not the disease.” He realizes what Rowen’s values were and chooses to withdraw aggressive treatment including the incubator. Although late in the game, perhaps a palliative care consult would have been helpful for the patient’s comfort.
The other point that this storyline raises is why the other characters involved in the case, two women, did not speak out more forcefully to advocate for the patient? Was this a commentary on power relationships between men and women? Or an observation that to err on the side of life excuses bullying colleagues and patients? Or did Halstead’s connection to this patient give him a priority to decide in their minds? It is important for all health care professionals to speak up when they see wrong and when they see a patient’s values or best interest being violated.
Grey’s Anatomy (Season 13, Episode 18). In this episode, Maggie’s mother, Diane, is actively dying and being prevented from doing so. Over several episodes, Diane has been seen and treated for aggressive breast cancer though she hid this from her daughter, the chief of cardiothoracic surgery. Having become aware of her mother’s illness late, Maggie feels like she is catching up and that she has the ability to cure her mother. The episode covers a long period of time, presented in a fractured montage as Maggie pushes her mother to take on risks that have no chance of cure. In other words, Maggie loses her medical objectivity and yet also fails to be present as a daughter. She ignores the ethical guideline that a physician should never treat her own family and falls into the trap of objectifying her mother. For example, when Maggie learns of an aggressive clinical trial, she urges her colleagues to perform a surgery on her mother that will improve a lab value that would make her mother meet trial criteria. The surgery will not benefit her mother’s health or prognosis. Meredith refuses to do the surgery, going to Diane and explaining her concerns. Maggie pleads with her mother, “don’t you want to live.” Diane sighs and decides right there and then, that her medical choices are being made to appease her daughter’s conscience rather than being in her own best or even chosen interest. Diane says this idea outright in a later conversation with Weber. Meredith is fired on the spot and Maggie pleads with other colleagues to do the surgery. They all agree the surgery is not in her mother’s interest, exposing her to risk for no health benefit, but they bow to the ferocious will of Maggie.
Diane begins the trial, which leads to a montage of horror: pain, night sweats, bruising, internal bleeding. Maggie says that if they get through this bad part then her mom will feel better. Maggie falls into the therapeutic misconception: She believes that the clinical trial is a magical pass to health and wellness. In reality, a clinical trial is about gathering data—it is not intended to cure, yet. Depending on the phase of the trial, the data might be about side effects, toxicity, efficacy or dosing. If the patient gets better, that is great, but such an outcome is not the intent of a trial. Diane begins to broach the conversation about her dying with Maggie by teaching her lasagna recipe to her daughter. She invites Maggie’s friends to dine on her dish, which is a symbol for motherly love. At the dinner, Diane broaches the idea of burial and the gathering ensures that Maggie has a supportive community to help her through the difficult task of grieving.
Eventually, Riggs helps Maggie to see that the treatment was not working and that Diane should be allowed to make her own decision: To stop treatment. Maggie goes to Meredith, who painfully recalls their mother’s death (the two women are biological half-sisters, but Maggie was adopted by Diane). Maggie does not know what to do if she is not being the aggressive doctor. Meredith tells her point-blank to be with her mother, and to talk about anything that her mother wants to discuss. And so the viewer sees Maggie paint Diane’s nails. Diane is giving a litany of life advice and although she does not want to die, seems peaceful. In another highly symbolic moment, Diane says the room feels stuffy and Maggie gets up to open a window where we hear a bird chirp. When she turns back, her mother has died. Opening a window to let a soul leave is a common practice in many cultures and in some, birds are believed to carry away the souls of the dead. This moment also demonstrates another end-of-life belief: The dying often wait for their loved ones to walk away and leave them alone before they die. Often the family goes to shower, grab a bite to eat, or sleep and it was when the patient is alone, that she or he dies.
Ironically, both Grey’s Anatomy and Chicago Med this week showed doctors choosing aggressive and painful treatments with no hope for cure or even patient comfort for people whom they admired and loved. In both shows, the physician-decision-maker crossed professional role boundaries and felt guilt out of not being there for the patient. The irony is that several studies have shown that when doctors make their own end-of-life choices, they choose less aggressive, more peaceful options (although recent studies suggest otherwise). In both cases, it is only when they stop making the decision that they want and listen to the values of their loved ones/patient, that the person in the bed becomes more than a disease to be conquered.
Diane’s storyline is an example of failure to communicate and to speak openly about dying. Maggie might have been more able to accept the death and to feel that she had been present for her mother if Diane had not kept the secret for so long. And Diane might have had the death she wanted rather than allowing her guilt push her to acquiesce to her daughter’s every demand. Both lost time to really be together and that is the greatest tragedy of this episode.