The third type of story told in these texts are those in which the medical treatment received does not align with the patient’s wishes. Some narratives depict situations in which the dying person is unconscious and their wishes unknown. In these situations, a proxy is selected to make decisions, ideally in the best interest of the patient. In Periyakoil’s (2015) article ‘Pitfalls for Proxies,’ she recounts two narratives of patients whose wishes are unknown and whose treatment choices are left to loved ones. In both of these stories, according to Periyakoil, the proxies made poor decisions based upon their own needs rather than those of the dying person. In the first example, a patient without an advance directive contracted an infection after chemotherapy. He was admitted to the ICU but, despite intensive treatment, his condition continued to deteriorate. However, his wife would not consider withdrawing life support. Finally, Periyakoil asked the wife if she would want this same treatment, were their positions reversed: “Of course not, she said. She would want to just die peacefully. So why was she subjecting her husband to this fate? ‘The duty
of a good wife is to save her husband,’ she said softly and with steely determination” (emphasis in
her husband – nor show any interest in pursuing what Periyakoil seems to consider a good death – but instead makes decisions based on her idea of how a good wife should act.26
In the second example, Periyakoil recounts a story of an old man dying in the ICU. Hospital staff eventually track down the patient’s son, John, who has not visited his father for several years. Despite being estranged, John becomes his father’s proxy by default and doctors ask him for permission to withdraw life support. John declines. According to Periyakoil, John was moved by the thought of all the time he had missed with his father and so was “primarily motivated by his own need to have one last opportunity to repair the broken relationship and make amends to redeem himself.” The proxy heeding the “call of redemption” – or the “call of duty,” in the example above – results in overtreatment and a prolonged death, and thus, according to Periyakoil, both are to be avoided by carefully naming a proxy in advance and making your wishes clear to that proxy.
Even in cases where a person’s wishes are known, they can be outright overruled by their proxy. Periyakoil further tells of Carl, who used his power as proxy to override his partner, Darlene’s, ‘do not resuscitate’ (DNR) status. Darlene had advanced lung disease and a bad case of pneumonia resulting in respiratory failure and loss of consciousness. Following what Periyakoil named the “call of love,” Carl, “who could not imagine life without Darlene,” made the decision to have her resuscitated. Darlene was furious at Carl for not allowing her to die ‘naturally:’ “How can I ever trust you again?” Darlene asked Carl after waking up and learning what had happened. However, Carl maintained that he had saved her life. Periyakoil’s telling of the narrative does not give a sense of Darlene’s actual death, but Periyakoil clearly thinks Carl was in the wrong in this situation and uses this narrative in an attempt to persuade readers to choose carefully when
26 It is worth noting here that the patient and wife in this scenario are Korean-American and Periyakoil paints the wife
selecting a proxy, noting that a close loved one may not be able to make the best decisions precisely because of their love for the patient.
In these narratives there seems to be little consideration of the potential needs of the proxy, or other loved ones, in end of life situations. As discussed in the Introduction a good death is co- constructed by dying people, their loved ones and healthcare providers. Many have argued that the characterization made by the dying person themselves is the most important (see Scarre, 2012), but endings do impact loved ones as well. Proxies and healthcare providers have to live with the choices they make on behalf of dying people. Periyakoil only takes the (assumed) perspective of the dying person – which seems to align with her own views on the good ending to life – into consideration in these narratives, without taking seriously, for example, the contextually-bound logic driving of the duty-bound wife or the estranged son.
Lastly, there are stories about medical interventions not in accord with patient wishes that result from loved ones being unsure how to respond to medical crisis. For example, Zitter (2015, April) tells the story of an 86-year-old with a chronic heart problem whose wife calls the paramedics when he collapsed at home. The patient had filled out an advance directive and had “adamantly, repeatedly, and clearly told his family he wanted no more of it. No more shocks, no more hospitalizations, no surgeries or catheterizations, no pacemakers.” His daughters arrive at the ICU a short time after the patient has been stabilized and are, understandably, very upset that his wishes had not been followed. Zitter explains that while the patient’s efforts at advanced decision- making were good, an advance directive does not relieve first responders of their legal duty to sustain life once called. She gives the family the correct form for the patient’s situation and sends them home with the proper documentation to ensure that the patient’s wishes are respected, whether or not he is able to directly communicate them in any future situations. This narrative does
have a happy ending because the mistake is corrected such that his wishes were ultimately respected: “We sent him home on hospice, Polst [form] in hand, to be with his family for the precious time he had left – to live, this time protected from the type of death he feared the most.” In this narrative, it seems that the patient’s wife had not intended to overrule his wishes but had not known how to ensure that he had “no more of it” given the medical crisis. Without knowing that paramedics are legally obligated to prolong life unless they have a physician’s order not to, she may not have known that she was going against her husband’s wishes by calling 911 when he collapsed. Interestingly, we don’t see any more of her perspective in the narrative, Zitter only narrates interactions with the patient’s daughters.
The lesson of these types of stories is first, to be clear on your wishes and second, to pick your proxy well – you want someone who will follow your wishes and, ideally, has enough medical literacy to see them through. It is telling that the proxies in each of these narratives make the decision for more treatment, even if unintentionally. In each case, these proxies chose such that the dying person was subjected to further curative treatment and their lives were prolonged. The authors make clear that rather than defaulting to more futile or risky treatment, proxies should be protecting their loved ones from that type of death. Again, the moral of these stories is that minimal intervention at end of life, especially when the patient is passive and cannot choose for themselves, is better.