End-of-life decisions are some of the most important anyone ever makes. Yet for most people, more thought goes into buying a car or a house than into making these plans. Many healthcare providers feel ill-equipped to help families navigate difficult medical decisions near the end of life.1 The four topics case analysis method developed by Jonsen2 uses four questions to analyze essential ethical issues (Table 1). This approach can be used in inpatient and outpatient settings.
This case study illustrates use of the four topics model. It is based on a composite of actual cases to protect patient confidentiality.
An 86-year-old woman, "BH," was admitted to the hospital via the emergency department with gross hematuria and a high fever. Her other vital signs were stable. She was nonverbal and did not follow commands.
The nursing home records indicated that BH had end-stage Alzheimer-related dementia. She had a court-appointed guardian for financial and medical decisions. Her adult children had poor relationships with each other, and the court felt it was in the patient's best interests to have an impartial guardian. She had no advance directives.
The patient was admitted to the general medical floor and started on IV antibiotics and IV hydration. The physical examination revealed a pale, ill-appearing elderly woman who was disoriented and nonverbal. She grimaced and moaned when her abdomen was touched. Her lab work revealed severe anemia, a high white blood cell count, and blood urea nitrogen and creatinine levels consistent with acute renal failure. Noncontrast computed tomography (CT) was performed on the abdomen and pelvis. A contrast CT was not performed due to the patient's poor kidney function. The CT scan showed a large tumor in the wall of the bladder and smaller tumors in one kidney, the liver and the base of the lungs. She was diagnosed with probable advanced metastatic bladder cancer.
The oncology consultants determined it would not be helpful to pursue a tissue diagnosis via biopsy, since the patient would not be healthy enough to undergo chemotherapy, the only likely treatment for her advanced cancer.
BH was listed as a Level 1 upon admission, meaning that all resuscitative measures would be provided for her. The attending physician contacted the guardian to review this, stating that Level 1 procedures would not benefit her and would actually be burdensome to her. The guardian told the attending physician she was reluctant to change the patient's level of care because she had heard about some recent cases of guardian liability when levels were changed without a court order. The physician requested a meeting with the guardian, the family and the patient's court-appointed attorney
At the family meeting, the physicians explained BH's condition and the probability of metastatic bladder cancer. The guardian and all family members were in agreement that the patient would not wish for nor would she gain any benefit from Level 1 care. But the family exhibited significant discord about placement of a feeding tube should she remain unable to eat, as well as the possibility of changing to comfort care from aggressive care.
The patient's attorney felt that without the approval of the guardian, it would not be possible to change the patient's level of care without a court order. Furthermore, unless it could be proven that it would be better to be deceased than to be in her current state, the court would be reluctant to order any change in level of care
In the meantime, the patient began to improve to her usual level of functioning and was discharged back to the nursing home. No determination about level of care was made at this time.
The four topics approach provides a framework for a thorough and vigorous consideration of all variables in this complicated case.
This topic addresses the principles of beneficence and nonmaleficence. How can we balance the duty to serve this patient with the duty to not harm her?
BH was admitted to the hospital with hematuria, fever and anemia. The examination determined that she has multiple kidney, bladder and lung tumors consistent with advanced metastatic bladder cancer. Her present condition is stabilized with fluids, antibiotics and supportive therapy.
She has an existing, progressive end-stage illness (Alzheimer disease) and has been diagnosed with advanced bladder cancer. The treatment would be chemotherapy, but she is too frail to tolerate it. In fact, her kidneys are too compromised to consider a CT with contrast because the test would cause kidney failure.
This is a patient with two chronic end-stage diseases. Alzheimer disease has rendered her incompetent and unable to care for herself. Her bladder cancer is advanced and even aggressive treatment would add only a short amount of time to her life. There is no alternative plan in the case of treatment failure, since there is no other recommended approach for her type of bladder cancer, other than supportive therapy (manage infection and anemia).
In summary, there is no beneficial curative treatment for this patient, and any attempts to treat her bladder cancer could cause harm. To attempt any treatment would violate the principles of beneficence and nonmaleficence.
This topic speaks to the principle of autonomy, the idea that a person has the right to self-determination. In cases of conscious, competent patients, it is easy to determine their wishes. When a patient is unable to decide, there are many avenues to explore. Some patients have living wills or have discussed their wishes with family members. In this case, the family is unable to help with this decision and the court-appointed guardian was not familiar with the patient's desires.
Background information is often helpful. Prior to her illness, BH was a vital member of the community. She was financially well off and had many philanthropic interests. She was intelligent, well-educated and on many boards and committees. She was an integral part of the social scene in her town and loved to give and attend social functions. She was always well dressed and took pains with her appearance. Even after moving to a nursing facility, she was still charming and enjoyed social activities and visits from friends.
She has a court-appointed guardian who is well-equipped to handle financial matters but does not feel comfortable with some of the medical matters confronting her. She did not know the patient before she became ill and has no personal knowledge of her wishes.
BH's guardian agrees that continuing Level 1 care would be burdensome, but she is reluctant to change the level of care. Her family agrees with this. They agree that they do not want CPR, but they are not in agreement about any other measures, such as feeding tube placement or use of a ventilator.
At the end of the day, we have a patient who cannot make decisions for herself and has a guardian who is reluctant to do so. The family reports no knowledge of her specific wishes but they agree that if the patient could see herself now, she would not want to live like this or want any heroic measures.
This is an accepted way to gauge patient preferences. Significant literature exists about the ethics of substitute decision making. As far back as 1990, Brock3 examined the concept of substituted judgment, stating that this could be done through knowledge of the patient's values. In 2008, Elke-Henner4 stated that "substitute decision making for previously competent patients usually presents few problems because it is generally easy to identify the values that the now incompetent person would have used."
Although BH's family believes she wouldn't want to live this way, the legal guardian has the final say and she is reluctant to change the level of care. This could be viewed as violating the patient's right to autonomy.
Quality of Life
Quality-of-life topics address the principles of beneficence, nonmaleficence and autonomy but in a slightly different way. The medical indications and patient preferences topic looked at issues up to the present. Quality of life addresses what will happen to the patient in the future. It asks what will happen if aggressive treatment proceeds.
BH has no hope of a "normal" life, even with treatment. Her underlying disease is progressive. Treatment for the cancer will cause renal failure, immunosuppression and susceptibility to massive infection, pain and discomfort. A younger, healthier person who understood the risk: benefit ratio and had a chance of returning to a normal life might choose to accept these risks. In this case it has already been determined that the patient had not been living her "normal life" for some time now.
Quality of life considerations should address any biases that the provider might have. For instance, would the provider not recommend treatment based on age alone, or do other factors come into the decision? If the provider cannot resolve biases, it is best to have someone else weigh in on the case.
Is this patient's present or future condition such that continued life might be judged undesirable? This question varies from culture to culture and is shaped by a patient's life experiences, religion and moral values. It can be helpful to evaluate a person's quality of life by using the restrictive, minimal and below minimal quality of life descriptions, as described by Jonsen (Table 2).1 Knowing what we know about the patient and her former life, as well as her present state and her future prognosis, one can't help but think she is living a minimal quality of life with the possibility of a rapid progression to below minimal.
It is interesting to note that the patient's lawyer was of the opinion, that, unless the patient would be better off dead that in her present state, it would be difficult to change her level of care in a court of law. It can be argued that some people, possibly the patient herself would think that she would be better off dead than in her present condition.
In this case, knowing what we know about the patient's past life and making inferences about her preferences, it seems that by not reducing the level of care, the patient's autonomy is being violated, as well as the principles of beneficence and non malificience. Continuing care could cause physical harm and pain, without any clear benefit. This would be a direct moral and ethical violation.
No end-of-life dilemma exists in a vacuum. Family dynamics, legal issues and religious and cultural issues make decisions difficult. The principles of justice and loyalty are addressed by examining these questions.
In BH's case, the family is dysfunctional and in disarray. An outside guardian was brought in to handle the patient's affairs. There continues to be discussion among the siblings as to what their mom would have wanted. The guardian is reluctant to change the patient's level of care for fear of legal repercussions. The patient's lawyer feels that a court order would be necessary in view of the guardian's reluctance. The staff is upset because they feel they are torturing this patient by submitting her to painful and needless treatments.
In some states the roles of decision makers are legislated by statute. In this particular state, if an incapacitated person does not have a medical power of attorney, the decision making authority defaults to the spouse and then adult children.5 The state law also outlines the conditions under which a guardian should be appointed, as well as the powers of a guardian. This law provided a clear framework for the guardian to follow, but she still had misgivings.
Contextual features include religious or cultural concerns, research issues and confidentiality issues. Financial concerns for both the hospital and family are also addressed as contextual features. Although is it tempting to think that all patients are treated equally without regard to finances or insurance, finances are a very real concern. None of these apply in this particular case.
Disagreement among the providers is a contextual variable. For instance, if the admitting provider felt strongly that nothing should be done, and the oncologist wanted to proceed at all costs, it could add another layer of complexity. In this case all providers were in agreement.
After a few days, the patient became more alert and began eating. She was responsive to touch and appeared alert, but still nonverbal. Her pain was controlled and her vital signs were stable. She was discharged back to the nursing home, without any resolution to her level of care.
Upon discharge there was a collective sigh of relief, but all agreed that it was only a matter of time before BH would be back facing the same dilemma. Even though nothing was resolved before the patient left the hospital, this case study demonstrated how the four topic method can be used to address end-of-life concerns. It adequately addressed the four ethical principles in a clear, thoughtful and systematic way.
BH was readmitted to the hospital approximately 6 weeks after the initial hospitalization. Her cancer had advanced rapidly during that time. On admission she was unresponsive, dehydrated and anemic. The guardian was contacted and after a discussion with her own lawyer, who said that she was at very low risk for any legal ramifications, she allowed the level of care to change. The patient was admitted to the inpatient hospice program for comfort care. She died a few days later with her family at the bedside and in agreement with each other for the first time in many years.
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1. Melvin CS, Oldham L. When to refer patients to palliative care: triggers, traps and timely referrals. J Hosp Palliative Nurs. 2009;11(5):291-301.
2. Jonsen AE, et al. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Practice. New York: McGraw-Hill; 2006.
3. Brock D, Buchanan AW. In: Deciding for Others: The Ethics of Surrogate Decision Making. New York: Cambridge University Press; 1990: 87-114.
4. Elke-Henner W. Incompetent patients, substitute decision making and the quality of life: some ethical considerations. Medscape Journal of Medicine. 2008;10(10):237.
5. Marshall J. Understanding Act 169. A Professional Guide to Living Wills and Advanced Health Care Powers of Attorney in Pennsylvania. http://www.paelderlaw.com/understanding-act-169-a-professionals-guide-to-living-wills-and-advance-health-care-powers-of-attorney-in-pennsylvania/
Mariann Ward is a family nurse practitioner at Crozer Chester Medical Center's Springfield Division in Boothwyn, Pa.