The Triple Helix @ UChicago

Winter 2014

"'We’ve Done All That We Can': Ethical Issues in End-of-Life Care" by Stephanie Bi

 

One of the core tenets of the Hippocratic Oath, which all physicians take at the start of their careers, states that “most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty.”[1] How exactly a physician, or any healthcare provider, for that matter, should determine how and when to end treatment for a patient is put to individual interpretation. End-of-life care is arguably one of the most fundamental questions of medical ethics, as it deals with the delicate and blurred boundary between life and death. To optimize end-of-life-care, a holistic and communicative approach can be implemented through a transparent doctor-patient relationship, a cohesive interdisciplinary team, and continuous follow-up with family members through the entire bereavement process. 

The terms “hospice” and “palliative care” are often conflated. To clarify, a “hospice” is not a place and often is a treatment team including a visiting nurse that is typically situated in the patient’s home. On the other hand, “palliative care” is generally given in an institutionalized facility such as a hospital or nursing home. Hospice care necessitates that one forego extensive life-prolonging treatment, while this is not necessarily the case with palliative care.[2] Additionally, to be eligible for hospice, one must have a physician write a note certifying that he or she had a life expectancy of less than six months.[3] 

To provide optimal end-of-life care, a doctor/patient relationship must be founded on ideals of transparency. Studies show that even though doctors usually make the admission to patients when a cancer is incurable, most are hesitant to give a more specific prognosis, even when pressed. For example, more than forty per cent of oncologists report offering treatments that they believe are unlikely to work. To avoid creating a sense of false hope that can be easily crushed, “concurrent care” is a viable option. In 2004, when the healthcare management company Aetna implemented an experimental program that allowed patients to receive hospice services without forgoing other treatments, the number of enrolled patients electing to use hospice jumped from 26% to 70% after two years. Despite the patients not giving up other treatment options, usage of hospitals and ICUs dropped by more than two-thirds, causing overall costs to fall by almost a quarter. Similar findings have emerged from data in La Crosse, Wisconsin hospitals, in which patients are asked upon admission to a hospital, nursing home, or assisted-living facility four questions about their wishes for end-of-life care. The questions themselves do not matter so much as the fact that they get conversation amongst the patient, the patient’s family, and the treatment team about end-of-life care options early on. Thus, early discussion about end-of-life treatment can reduce the false hope built on obscure treatment options with little probability for success.[3] 

Physicians are by no means the only members in treating patients with terminal illnesses. As they see scores of patients every day, they may end up spending the most time providing day-to-day care. An integrative and interdisciplinary team composed of nurses, chaplains, social workers, psychologists, and other members must work together to provide the most efficient and effective care for a terminally ill patient. For instance, one of the services that can be provided by the team is a social worker skilled in working with family systems. A treatment team that communicates well not only with the patient’s family, but also with one another, is crucial to patient care.[4] 

Hospice and palliative care nurses, in particular, come into the closest contact for the longest amount of time with the most terminally ill patients. Author of What It’s Like to Be a Hospice Nurse Kimberly A. Condon had worked in emergency medicine for 14 years before deciding to switch to a hospice nurse specialty. On one of her first site visits as a hospice nurse, Condon visited a newborn infant with chronic seizures, right as he was taking his final breaths. Starting to sob uncontrollably, she felt terribly ashamed for ruining the parents’ final moments with their son, berating herself for not being “their support, their rock” in their time of need. To Condon’s surprise, the parents expressed intimate gratitude and hugged her. Condon reasoned that perhaps by being emotionally “there” with the parents, she had not failed them after all.[5] Thus, end-of-life care professionals in particular must maintain a delicate balance between expressing empathy and presenting oneself as strong and reliable.  

It is common for medical personnel such as Condon to feel grief, failure, self-doubt, powerlessness or a reconsideration of working with terminally ill patients. To address this issue, it is important to provide both educational and emotional support for professional caregivers. Emotional support can come in the provision of a professional counselor, organization of routine debriefing sessions, and access to collegial support and mentorship groups. On the education front, there are many online resources for personal and institutionalized education including: The Initiative for Pediatric Palliative Care, Education in Palliative and End of Life Care, and the American Academy of Hospice and Palliative Medicine.[6] 

So what happens when the treatment team has “done everything they can”? Does the physician’s duty to the patient’s care extends past the patient’s death? For the late patient’s family, especially for pediatric patients, mourning is a long process. Loss of a child can increase risk for anxiety, depression, suicidal ideation, decreased quality of life, relationship struggles, and social decline. Many parents report that despite feeling properly treated before and during the patient’s death, they experienced feelings of abandonment by the treatment team during the bereavement period. According to Koch et al, the ethical concept of “nonabandonment” must be encompassed in a physician’s duty, along with the other factor of acting in the best interest of the child. [4] 

Especially with pediatric patients, it is important to have the interdisciplinary team comfort and guide the parents and siblings of the patient. Oftentimes, siblings are neglected before, during, and after the patient’s death and as a result, feel alienated, lost, and traumatized. A recent study of bereaved parents and siblings by Steele et al. recommended that healthcare providers address these following themes: (1) improved communication with the medical team, (2) more compassionate care, (3) increased access to resources, (4) ongoing research, (5) offering praise. Actively engaging siblings in treatment discussions throughout the entirety of the process, and assigning a child life specialist/social worker from the interdisciplinary team to work with the sibling, can achieve these terms. [4] 

Death is often a taboo topic in colloquial discourse, setting off difficult conversations and decisions in healthcare. We must directly address ethical issues concerning end-of-life care, rather than tiptoeing around them. A comprehensive and holistic model of care will allow for the best care of both the patient and the patient’s family through the use of a cohesive treatment team and follow-through with the patient’s family even after the patient’s death. Despite the human instinct to fight for survival, it is crucial that we calmly and realistically consider what awaits all and eludes none when medicine can do us no more good – the earlier, the better.

References

[1] Tyson, Peter. "The Hippocratic Oath Today." PBS. http://www.pbs.org/wgbh/nova/body/hippocratic-oath-today.html (accessed February 21, 2014).
[2] Villet-Lagomarsino, Ann . "Hospice Vs. Palliative Care." Hospice Vs. Palliative Care. http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspx (accessed February 22, 2014). 
[3] Gawande, Atul. "Letting Go." The New Yorker. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all (accessed February 21, 2014). 
[4] Jones, Barbara, Nancy Contro, and Kendra Koch. "The Duty of the Physician to Care for the Family in Pediatric Palliative Care: Context, Communication, and Caring." The Duty of the Physician to Care for the Family in Pediatric Palliative Care: Context, Communication, and Caring. http://pediatrics.aappublications.org/content/133/Supplement_1/S8.long (accessed February 22, 2014). 
[5] Condon, Kimberly A . "What It's Like to Be a Hospice Nurse." Slate Magazine. http://www.slate.com/articles/life/family/2013/06/nurses_and_hospice_care_personal_essay_from_a_nurse_working_in_end_of_life.html (accessed February 22, 2014). 
[6] Michelson, Kelly N, and David M Steinhorn. "Pediatric End-of-Life Issues and Palliative Care." Clinical Pediatric Emergency Medicine. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2344130/ (accessed February 22, 2014). 

 
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