Case Discussion:

CASE 1:  DECISIONAL CAPACITY

Mr. Smith has end-stage COPD and cardiomyopathy, septic shock, respiratory failure (ventilator dependent, failing extubation), acute on chronic renal failure requiring hemodialysis, and a marked decline in functional status prior to admission. He requested withdrawal from the ventilator after 96 days in ICU and just prior to planned transfer out of state to a chronic ventilator support facility, asking his doctor and wife that his son not be consulted regarding the decision. The physician requested psychiatric consult and bioethics committee evaluation.

Case discussion:

     This case may appear to pose an ethical dilemma, involving human relationships, in which there is moral tension and a conflict of values between two or more people.  The issues central to this case, however, are autonomy and decisional capacity. Does the patient have the autonomous right to make his own decision and does he have the ability to make decisions? The patient’s legal rights to make healthcare decisions for himself, even if refusing treatment may lead to an adverse outcome or an earlier death, has been well established. Whether or not the patient has decisional capacity is the critical issue. Key factors in determining decisional capacity are (1) ability to understand relevant information; (2) ability to understand the medical situation and its possible consequences; (3) ability to communicate a choice; (4) ability to engage in a rational deliberation about one’s values in relation to the physician’s recommendations about treatment choices; and (5) ability to express the same request over a period of time. In considering the patient’s capacity, it is important to distinguish the difference between decisional capacity and mental competency. Mental competency (often confused and misused in the healthcare setting) is a legal term and can ultimately only be determined by a judge.  Decisional capacity can and should be determined routinely by a physician when interacting with patients and when obtaining informed consent. Legally competent individuals may commonly have mental capacities compromised by illness, anxiety, or pain, which can temporarily or permanently impair decisional capacity and require that decisions be made by the patient’s surrogate.

In this case, Mr. Smith demonstrates decisional capacity and has the legal right to demand that he be withdrawn from the ventilator. He has an end stage condition and deems his quality of life, permanently dependent upon a ventilator, to be unacceptable. Discontinuing his ventilator at his request is not euthanasia, rather it is allowing him to die of his end stage condition. The physician should respect his wish not to discuss his decision with his son. Alternatively, if he feels obligated to tell the son, he must either obtain Mr. Smith’s consent to tell the son or ask to be replaced by another attending physician.

Outcome in this case:

In this instance, after further discussion with a member of the bioethics committee, Mr. Smith agreed to having his son told. He was taken off the ventilator. He died peacefully of respiratory failure with appropriate symptom management with his family around him.

CASE 2: AUTONOMY

Mrs. Jones  is a sometimes forgetful and confused but independent and self-sufficient 74 year old who refuses to have her gangrenous left foot amputated despite being informed and aware that failure to do so may lead to her death. The physician is considering seeking judicial authority to treat.

Case Discussion:

This case also raises questions of decisional capacity. Mild dementia casts doubt on her ability to make an autonomous judgment. However, even persons whose mental performance is somewhat abnormal should not thereby be automatically disqualified as decision makers. Individuals may be poorly oriented to time and place but still understand the issues confronting them. The central test is whether or not the patient understands the nature of the issue and the consequences of the choices relating to the issue. The physician should have a discussion with the patient of sufficient length and, if necessary, on more than one occasion, in order to be satisfied that the patient understands the issue and the choices and consequences. In addition, the patient’s decisional capacity should come into question if the choice made does not appear to be in keeping with the person’s own life history and values (“authenticity” of the choice). (Jonsen, Siegler, Winslade, Clinical Ethics, 5th Ed. 2002).              

Autonomy is the individual’s right to determine his or her own course of action. Autonomy presumes that the individual has decisional capacity. Autonomous decisions are typically consistent with the persons values, or ideas and concepts that give meaning to life, usually derived from social norms, religion, and family orientation. Based upon balancing the benefits versus the burdens of treatment, individuals may choose to pursue or withdraw or withhold treatment. Although it may be psychologically different, withholding versus withdrawing treatment is morally, ethically, and legally seen as the same. Families typically have a more difficult time emotionally dealing with the patient’s decision (or making the decision as surrogates) to withdraw treatment than to withhold treatment. The role of the physician should be to educate the patient and family of the medical pros and cons of treatment choices. Having done so, however, physicians should avoid imposing their own values on the patient or family. In situations in which either the treatments offer no benefit (medical futility), physicians should not offer or should advise against treatment. In circumstances in which the burdens of treatments outweigh benefits, physicians should seek to educate the patient and family in an effort to avoid initiation of treatment rather than subjecting families to the emotional difficulty involved in withdrawing treatment later. Examples that may frequently involve decisions about withholding versus withdrawing treatments are artificial hydration/nutrition, ventilator support, dialysis, CPR, and antibiotics. 

Outcome in this case:

In this example, Mrs. Jones’ clear assertions about her choice & the broader evidence of her life & values suggest that she has adequate decisional capacity to make an autonomous choice. Her physician should not seek judicial determination of incompetence, unless genuine doubt exists about her capacity. If the physician is convinced that she fully understands the consequences of her decision & she continues to refuse amputation, treatment should be limited to appropriate medical, non-surgical management. (Jonsen, et.al., Clinical Ethics)

Lets consider Mrs. Jones in another scenario: She comes to the ER as previously described. In this version of the case, however, she adamantly denies that she has any medical problems. Although the toes of her left foot are necrotic and gangrenous tissue extends above the ankle, she insists that she is in perfect health and had been taking her daily walk every morning and evening. Her neighbor asserts that Mrs. Jones has been housebound for at least a week, a fact that led her to drop in to see whether there was a problem. What do you think in this case?

In this version, Mrs. Jones does not demonstrate decisional capacity. She is denying her infirmity and her need for care and appears to be delusional. In Mrs. Jones’s best interests, the appointment of a proxy (if no designated surrogate) should be sought, goals of care discussed, and a decision about surgery considered (Jonsen, Siegler, Winslade, Clinical Ethics, 5^th Ed. 2002)

CASE 3 ADVANCE CARE PLANNING

Mrs. Smith is an 82 year old lady with severe and progressive debilitation due to supra-nuclear palsy and several other comorbid conditions. When her neurological condition worsened, she became unresponsive, and she began to constantly bite her lip, all but one child asked that her Advance Directive be honored and that her feeding tube should be removed. Because of the remaining vocal daughter, however, concern was raised about liability

Case discussion:

In 1990 Congress passed the Patient-Self Determination Act requiring hospitals that receive federal funds to ask, educate and assist patients to complete an advance directive (living will). An advance directive is a legal document that allows an individual to state what treatments they would want or not want when they are unable to make those decisions themselves.

Types of Advance Directives

Healthcare Surrogate: also called Durable Power of Attorney for Healthcare, Attorney-in-Fact

Legal document (in writing) designates a person 18 years or older to serve as one’s agent (voice) when that person can no longer make medical decisions for themselves (incapacitated).

Living Will: A statement to your physician, your family, and friends about your philosophy as related to end-of-life decisions. For examples, “If I become unable, by reason of mental and physical incapacity to make decisions about my medical care, let this document provide the guidance and authority needed to make any and all such decisions. If I am in a permanent coma or vegetative state, and there is no reasonable expectation of my recovery, I do not wish to be kept alive by artificial means . . . etc.” 

Combination Documents:  When the living will and the healthcare surrogate designation are combined, the document is commonly called an Advance Directive or Advance Care Plan.

In the state of Florida, the Living Will becomes effective when:

1.    Two or more physicians (attending and another consultant) have determined that there is no reasonable medical probability of recovery.

2.    The individual does not have decisional capacity.

3.    The individual has a terminal, end-stage condition or is in a persistent vegetative state.

In Florida, the document does not have to be notarized. It must be completed correctly and witnessed by two individuals over the age of 18, but not the surrogate and not the person’s physician; one witness should not be a blood relative. (Florida State Statutes Chapter 765.303)

Healthcare Surrogate

The designation of your healthcare surrogate is VERY IMPORTANT. Your surrogate should be capable and willing to act in accordance with your philosophy, your values, your choices. You should know and trust this person very well. Your surrogate should be able to seek and gather information, feel comfortable speaking to physicians and your friends and family, and should be able to make difficult decisions. Ask your healthcare surrogate if you can have their permission to designate this responsibility to them. Explore their feelings about making tough decisions? Can this person stand-up against potential opposition and pressure from healthcare providers, family and friends? Can this person put his or her own feelings aside and say “it’s not about me.”

Pitfalls of Advance Directives

Despite education efforts, and the horrors of landmark cases, less than 20% of persons in US have advance directives. Most healthcare surrogates do not understand their responsibility and have not discussed the “what ifs” with the person. Living Wills can be vague and MD’s do not know how to interrupt the document and statements like “heroic measures.” Many healthcare providers are unable/unwilling to recognize the dying patient. Many are uncertain when the advance directive should be executed. Families sometime can not find or remember where the document is located when they need a copy. Hospitals fail to obtain a copy (if any) of the document when the patient is admitted to the hospital. Most physicians typically do not talk about advance directives at the time of the office visit. There is a lack of education at all levels, such as myths that “they will let me go even if I can be saved” if I complete a document. There is poor communication on all levels as to the “big picture” of the individual in the bed.

What happens if I don’t have an Advance Directive?

        Decisions will be made by your surrogate and your physician. If you don’t designate a surrogate, the legal order of surrogacy in Florida (if available or appointed) is:

Specific Recommendations for you, your family, and your patients:

Dual Passports

        “Everyone who is born holds dual citizenship, in the kingdom of the well & in the kingdom of the sick & dying. Although…we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

                                                       Susan Sontag

Outcome in this case:

The one daughter never agreed with her siblings about removal of her mother’s feeding tube. The feeding tube was removed per the patient’s legal written wishes. Her disease process was terminal and two physicians agreed with this fact. The family obtained Hospice services and the patient died a peaceful death 7 days later with her family at her side. Education was done with the Nursing Home staff since they fueled the ethical dilemma in the beginning.

CASE 4:  MEDICAL FUTILITY

Mrs. Franks is a 63 year old with severe COPD, a previous stroke who presented with respiratory failure, non-ST elevation MI, and hypotension. Echocardiography demonstrated ventricular septal aneurysm, small VSD, IV ejection fraction 30%, and early pericardial tamponade. The patient improved with fluids and pressors, but failed an attempt to wean off the ventilator. She was later found to have extensive lung cancer with presumed malignant pericardial effusion. She had lost decisional capacity but had a Living Will. Cardiology recommended comfort measures only, while pulmonology consulted oncology for chest irradiation. The patient’s children came into conflict over, as did the cardiologist and pulmonologist.

Case discussion:

This patient has at least four severe medical conditions that may lead to imminent death: metastatic and aggressive lung cancer; severe COPD with ventilator dependency; malignant pericardial effusion with impending pericardial tamponade; and severe coronary artery disease with severe ischemic left ventricular dysfunction. Each problem imposes an extremely poor prognosis, but each is physiologically treatable on an individual basis. However, the total burden of pathology and impact of each condition on the treatment options and outcomes of the others makes significant survival, even survival to leave the hospital, impossible.  What would otherwise be an extremely low probability of response to aggressive treatment of her lung cancer is made futile by her heart disease and COPD. She has failed weaning off the ventilator due to the severity of her underlying COPD with the addition of obstruction of multiple airways by tumor, likely also aggravated by borderline pericardial tamponade. Irradiation to the chest would initially induce inflammation, worsening her pulmonary condition and pericardial tamponade. She is unable to survive the days or weeks of treatment that would be necessary to significantly improve her airway obstruction from cancer and pericardial metastasis.  Similarly, her cancer and COPD preclude effective treatment of her severe heart disease. She is not a candidate for bypass and septal aneurysm surgery, much less cardiac transplantation. She has no medical possibility to sustain life off the ventilator and is in imminent danger of death due to overt pericardial tamponade, recurrent myocardial infarction, enlarging VSD or ventricular septal rupture, and any number of other complications including pulmonary embolism, sepsis, pneumonia, cardiac arrhythmia and recurrent stroke. Treatment intended to significantly prolong life or stabilize her to the point of transfer out of the ICU is not possible. 

Because of the multiple organ systems and specialists involved, however, the family has not been prepared for the certainty of her imminent death. In fact, false hopes have been raised and family conflict has arisen through discussion of possible irradiation and chemotherapy. The relevance of the patient’s Living Will has not been acknowledged and the family has been led to believe there can be a possible difference in outcome with aggressive cancer treatment. The physicians involved have failed to adequately communicate the implications of the patient’s multiple comorbidities among themselves, to recognize clear medical futility, and to communicate this to the family. The physicians have missed the opportunity to inform the family that the prognosis was extremely poor; to allow the family to begin the process of grief and acceptance; and begin discussions of alternative palliative care early in the patient’s hospitalization. In today’s medical era of advanced technology, patients and families typically expect that a good outcome is possible unless they are clearly told otherwise. Ultimately, the physicians have failed to anticipate, recognize, and communicate medical futility and to include the family in this process in order to fully shift the treatment goals to palliative care at a time when all further curative efforts are ineffective.

The term futility is now used to cover many situations of predictable improbable beneficial outcomes, improbable success, and unacceptable benefit-burden ratios. Beauchamp and Childress (Principles of Biomedical Ethics:  5^th ed. New York, Oxford University Press; 2001) have suggested that the controversial word futility should be avoided when communicating with patients and families and possibly even between physicians: “This situation of competing conceptions and great ambiguity suggests that we should generally avoid the term futility in favor of more precise language.” Alternative terms that may allow clearer communication include “inefficacious,”” inappropriate,” and “non-beneficial.” A broad understanding of the multiple situations that may be considered medically “futile” is beneficial to the physician, since patients with conditions that fit any or all these definitions may warrant recognition and communication that futility exists and a full shift from curative to palliative care. The multiple possible applications of the term futility may also lead to confusion and miscommunication. The following are among many situations in which treatment might be considered futile if it cannot: (1) achieve its intended physiological effect; (2) achieve a benefit for the patient (even though it may achieve its physiological effect); (3) improve patient’s quality of life; (4) significantly improve duration of life; (4) postpone death; (5) achieve the basic goals of medicine and (6) avoid harm to the patient without compensating benefit (Hommel, 2002, The Catholic Health Association)

Section three in this series attempts to address the issue of medical futility in a manner that can reassure the practicing physician that recognition of futility is both possible and critical in the individual patient. Please see section three for a detailed discussion. Excerpts from section three are included here:

     “The “futility debate,” thus, ultimately centers on the question of whether physicians are willing to embrace their unique responsibility as the professional advocates for patients in recognizing when patients are “there,” that is when all reasonable hope of mastery of disease has vanished. Like all other medical decisions, it is not necessary or possible for all physicians to agree upon exactly what circumstances must exist in all patient conditions in order to define futility. In fact, the decision should and must be unique to each patient. What is needed is for all physicians to recognize the compelling obligation to apply all available data and skill to making the decision that medical futility exists at a specific point in that individual patient’s life that is neither before hope for cure has gone, nor after futile treatment has deprived the patient of the best possible death . . .

. . .When treatment is not clearly futile, but may offer little benefit with significant risk or morbidity, the informed patient or surrogate must make the decision to accept or reject treatment based upon personal values. The critical ingredient is communication. Communication often breaks down when physicians, patients and families choose to continue to pursue false “hopes” of improbable or impossible cure, rather than going through the painful, sometimes lengthy grieving process of recognizing and dealing with futility. However, it is only through timely recognition and communication that futility exists (by physicians) and acceptance (by patients and families) that curative or life-prolonging treatment is no longer beneficial that patients and physicians can be freed to redefine “hope” as a comfortable death with dignity, through unrestricted palliative care.”

Outcome in this case:

Later in the day, the patient’s long-standing primary physician (internist), who was attending physician, supported the cardiologist’s order for a palliative care team consultation. The cardiologist spoke with the oncologist, reemphasizing the fact that the patient had no other explanation for the pericardial effusion than malignant (thus, metastatic) pericardial effusion and as well as end-stage coronary heart disease and lung disease. The oncologist noted he had not seen the echocardiogram report indicating the effusion and early tamponade, nor had he read the cardiologist’s progress note from two days before. He agreed that irradiation therapy would be inappropriate and canceled the bone scan and brain CT. The palliative care nurse and the cardiologist arranged a meeting with the family and explained the implications of the patient’s multiple medical problems.  After an explanation of the reasons aggressive treatment options could not be effective, the family said “so you are telling us there is no hope for cure?” and this was reaffirmed. The family then asked what could be done for her. They were reminded of her wishes in her living will and told that two possible goals could be to keep her comfortable at all times and to try to allow her to come off sedatives, possibly to come off the ventilator in order to have a chance for family to communicate their love for her before her death. They stated that she would not want to remain on the ventilator in her condition, but asked if the family could decide when she would be extubated. The palliative care nurse reassured them that the patient could have sufficient sedative and analgesic medications available that she would not suffer. She was weaned off most of her sedation and extubated with family in attendance, was able to communicate some with family members before she again developed increasing hypoxia and respiratory distress, and was then re-sedated and allowed to die a quiet and dignified death attended by her family.

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