The ethics team was consulted for a middleaged man with a diagnosis of stage IV adenocarcinoma with multiple abscesses and a large eroding intra-abdominal mass. He is being treated with intravenous medications, including broad-spectrum antibiotics and antifungals for recurring intra-abdominal sepsis/infections. He has developed a small bowel-to-colon fistula that is not amenable to surgical intervention, placing
him at risk for dehydration due to high output. There is no role for chemotherapy while he is actively infected, and he is not a candidate for surgical intervention. He is unlikely to have any therapeutic options in the future.
The medical team requested an ethics consult with a question regarding code status
and goals of care. The patient has expressed privately to the team that he does not want any further escalation of medical treatment, although he would be interested in alternative treatment options such as naturopathic therapy. He has also expressed to the medical team that cardiopulmonary resuscitation (CPR) in the case of cardiac arrest seems futile to him, and he wouldn’t be interested in it.
The patient has an extremely close relationship with his wife of many years, who has suffered the devastating loss of her mother within the past year. Her mother’s death was complicated by miscommunications among the involved healthcare providers, the hospice team and her family. She articulates very strong feelings that hospice and palliative care leads to patients not having a say in their care; she equates these forms of care to euthanasia. Her feelings are buttressed by her extensive research via the Internet. She has a strong spiritual belief
system and believes that many people with terminal illness have conquered their disease with prayer and faith.
The medical team has informed the patient and his wife that naturopathic services are not available within the hospital. These treatments would require outpatient visits once the patient is stable enough to transfer out of the hospital.
Even though the patient has privately expressed to the team that he has no interest in further escalation of treatment or resuscitation in the event of cardiac arrest, when his wife is in the room, he acquiesces to her wishes that everything possible be done, including antibiotics, antifungals, vasoactive agents, intubation as needed, and CPR. He is competent and has a clear mind, and does not want to invalidate his wife’s feelings or hurt her; thus, he is able to express his own wishes only when his wife is not in the room.
The medical team is faced with the question of whether to respect the patient’s wishes as they are stated privately, or as he states in front of his wife.
The obvious ethical question confronting clinicians in this case is whether what’s best for this patient (let’s call him Marty) is to follow his privately expressed wishes to forgo life-prolonging interventions, or to provide any lifeprolonging interventions the patient’s wife (let’s call her Faith*) requests, based on Marty’s acquiescence in Faith’s presence. A less obvious ethical question is which medical interventions should be offered to Marty. In acute care settings, consensus surrounding “non-beneficial” medical interventions at the end of life has been reached for some interventions, but not for others. For example, a patient who is declared dead based on neurologic criteria is not typically continued on ventilator support. If surgeons can’t achieve the goal of a surgical intervention, they don’t offer to operate. For a myriad of reasons, we haven’t achieved consensus regarding when other medical interventions no longer benefit a patient who is dying and thus shouldn’t be offered. Examples include dialysis, ventilator support, extracorporeal membrane oxygenation, ventricular assist devices, enteral and parenteral nutrition and hydration, antimicrobials, blood products, and attempted CPR. Our acute care medical technology has complicated the already existentially complex question of when a person is “dying.” No wonder patients, family members and healthcare providers struggle with determining the right thing to do.
In this case, it appears Marty knows he is dying and prefers to forgo interventions such as attempted CPR, but is open to holistic interventions such as naturopathy. Whatever Marty hopes to achieve from naturopathic medicine (better quality of life, prolonged life, or both), it’s his choice to make, as long as he is adequately informed. Clinicians might even consider helping him evaluate available naturopathic services, including practitioners who visit patients at home or in the hospital. This may be an excellent way of building trust, which is essential to addressing the central ethical question this case presents.
The statement that Marty is “unlikely to have any therapeutic options in the future” needs to be re-evaluated. While surgery, chemotherapy and radiation therapy might not be options, Marty could presumably receive intravenous fluid to address dehydration. What about nutritional supplements – for example, total parenteral nutrition? It’s unclear whether this would benefit him at this stage in his disease. Marty and Faith must be informed about what to expect as his disease progresses, and they should be helped in identifying what role the healthcare team can play in supporting them through his current hospitalization and (if possible) discharge from the hospital.
What’s unclear is whether Marty is willing to accept any life-prolonging intervention to help ease Faith’s distress (and whether he believes this would ultimately minimize her grief), or if he is passively acquiescing to Faith’s wishes because he can’t bear to see her in distress and doesn’t know how else to address her suffering. It’s the rare individual who knows how to navigate the emotional minefield of end-oflife communication without support from those who have walked the path before. A skilled clinician or ethics consultant should be able to help Marty and Faith articulate their understanding of Marty’s condition and identify their hopes, fears and worries (for themselves and for each other). This is the place to begin a discussion about end-of-life care, not whether Marty should be a “full code” or not. The quality of this communication and support will determine whether the healthcare team has “done everything” to minimize Marty’s and Faith’s suffering and Faith’s future regrets.
Clinicians may mistakenly label someone like Faith as “in denial” and focus their energy on convincing her that Marty is dying and that certain interventions should thus be withheld, such as antibiotics or CPR. The problem with this approach is that it is difficult to establish trust when focusing on interventions that won’t be provided. Also, it may seem disingenuous to worry about how Marty is harmed by these interventions – for example, Marty wouldn’t be conscious during a CPR attempt and would thus be unlikely to suffer (recent accounts of “near-death experiences” during CPR attempts notwithstanding). While healthcare providers may suffer moral distress at providing CPR more for Faith’s emotional benefit than for Marty’s well-being, this shouldn’t be misrepresented as a harm to Marty (assuming he first agreed to full code status).
This case highlights the importance of approaching patient ethics not only from an analytical perspective but also from a humanistic perspective. Our healthcare system and society fail to prepare us – intellectually, spiritually and emotionally – for death. Healthcare providers are obligated to help remedy this deficit by supporting both patients facing death and those who love them. This isn’t achieved merely by giving factual information and respecting a patient’s expressed wishes. It requires connecting with the patient and family to gain their trust and developing a plan of care that best delivers what the patient and family truly want and what can be reasonably achieved.
It’s clear Marty values minimizing Faith’s sorrow and future regrets. Yet the assumption that the best way to achieve this is to agree to whatever Faith wants without an open and honest discussion needs to be challenged. Marty and Faith must understand that while no available interventions can stop the progression of Marty’s disease, the team will not abandon them. Faith’s disillusionment with hospice is regrettable, given that hospice services are usually a good fit for someone who wishes to take a more holistic approach to care. Perhaps Faith would be amenable to talking with a trusted hospice provider to help her process what happened with her mother and how Marty’s situation (and a different provider) may yield different outcomes. Faith may also benefit from a counseling or spiritual care referral to process her emotions surrounding her mother’s death, which are likely to complicate her grieving process during and after Marty’s death.
There is no mention of an advance directive here. Absent this, Faith would be Marty’s decision-maker in the event that he loses this capacity. Thus, it is important that Marty understands the implications here: if he makes his wishes known in the form of a living will or oral advance directive, this might take away a perceived burden that Faith is deciding “when he dies”; yet, if he feels that she would be better off, emotionally, opting for whatever life-prolonging interventions are offered, then he may decide to defer to her wishes, which would be his right as long as his choice is free and informed. At that point, the medical team would draw boundaries on what life-prolonging interventions would be available to Marty. It’s not uncommon in end-of-life care to provide some interventions more for the benefit of loved ones than for the patient. However, if skilled end-of-life communication were more accessible, we would see fewer cases where “doing everything” for a dying patient is equated to providing interventions that merely prolong the dying process, probably increase the patient’s discomfort and isolation, and questionably help family members assuage their grief. Regardless of whether Marty dies a “natural” or a “high-tech” death, he and Faith deserve the best of what palliative care has to offer.
For brevity, mention of other loved ones involved in Marty’s and Faith’s lives was omitted, but these individuals should also be considered.