Case Examples: Substitute Decision Making

  • Case 1

    An 86-year-old female patient admitted to hospital due to an increasing inability to cope at home and recent fall in which she suffered a broken hip. She has previously been diagnosed with COPD, hypertension and increasing cognitive deficits. While in recovery in hospital, an abdominal mass has been found (malignancy suspected but not confirmed), she has had a decrease in her ability to care for herself, difficulty swallowing with increasing aspiration risk, early stages of renal failure and an exacerbation of her cognitive issues. The patient does not have a formal Advance Directive nor has she assigned a Power of Attorney. She has three daughters and one son who is a cardiologist and lives out of the province. The daughters have demanded that the patient be a full code, requested that transfer be made to ICU with a PEG tube placed and dialysis started should it be required. The son phoned you over the weekend and stated that given his mothers age and complex medical situation he expects that she would be provided symptom management and comfort care but that no aggressive measures should be undertaken to interfere with the natural decline and progression of his mother’s diseases. He has requested regular updates regarding her status and any interventions or treatments proposed.

    What are some of the ethical issues in this case?

    Does ‘increasing cognitive defects’ = lack of capacity?

    Are any ethical principles in conflict? Autonomy? Beneficence? Non-maleficence?

    Can an SDM demand treatment?

    Who is responsible for proposing a plan of care?

  • Case 2

    Mr. Parker is an 88-year-old resident of your LTC home with end-stage Alzheimer’s. He is wheelchair bound and spends most of his days sleeping in his wheelchair near a window facing the garden. He needs to be spoon fed but has recently started to refuse to eat. Mr. Parker has three children, one of whom is very involved in the care of her father. The team approaches the daughter about her father refusing to eat, and feels that his refusal is legitimate. Thus, they propose changing the plan of care to palliation. The daughter absolutely refuses, claiming that “you cannot kill my father, I want everything done to keep him living!”

    What are some of the ethical issues in this case?

    Do we know whether the resident is capable to make his own health care decisions?

    Are there any known wishes from Mr. Parker? What would he want? What are his values?

    Is his daughter the substitute decision-maker? Can she, in this role, demand treatment and expect that you comply?

  • Case 3

    Mrs. Beaudoin, who is 97 years old, was admitted to your LTC facility 6 years ago. Shortly after becoming a resident, she suffered a cardiac arrest and was found to be unresponsive by the staff; CPR was initiated for a total of 20 minutes prior to return of spontaneous circulation. She has an advanced directive stating that she agrees to “transfer to an acute care facility”, but other options, such as CPR and intubation, were not explicitly addressed in this document. She has no formal Power of Attorney.

    Initially, Mrs. Beaudoin had lived at your facility watching TV for most of the day. She was wheelchair bound and required assistance with most activities of daily living (ADLs). Her husband lives at your facility with her and is quite frail with moderate dementia. Beaudoin is frequently visited by her large extended family, which comprises 4 children and 5 grandchildren. She is known to have cancer throughout much of her body, moderate dementia, a very bad heart, and type-2 diabetes.

    After her cardiac arrest and a short stay in the Hospital ICU, Mrs. Beaudoin is brought back to your facility able to breathe on her own, but with a moderate -severe brain injury caused by lack of oxygen after her cardiac arrest; this has left her unable to communicate in any meaningful way with others. She is receiving thickened fluids as her source of nutrition and hydration, but is only able to consume about half of the calories that would be needed to keep her at her current weight. Unfortunately her health begins to decline further shortly after returning.

    The team decides to hold a family conference with the resident’s children, and proposes a plan of treatment that would focus on comfort care only, excluding CPR if needed again. The patient’s eldest daughter does not agree and states that her mother is “a fighter” and wanted to live to be 100 years old so that she could receive a letter from the Queen. The daughter asks that her mother be transferred back to the acute care hospital to receive the care of “experts” and so that she could be seen by a surgeon for surgery and chemotherapy for her cancer.

    The treating physician discusses the case with the intensivist on call at the hospital over the telephone. The intensivist agrees that the prognosis is extremely poor and likely the resident would not benefit from further invasive treatment. The intensivist at TOH holds a family conference with the family and team at the LTC home over the telephone. He identifies himself as an expert in the field. The older daughter, reiterates their requests to the intensivist.

    What are some of the ethical issues in this case?

    Who is the appropriate substitute decision-maker (SDM) in this case?

    If there is more than one SDM, what should you do if they disagree?

    Because we know Mrs. Beaudoin’s desire to live to be 100, must we ensure that “everything is done” in an attempt to prolong her life?

  • Case 4

    Mrs. Potter is a 93-year-old resident of your long-term care home who once traveled the world as a culinary expert, sharing her love of food with many. She now has end-stage Alzheimer’s. In the last year it has worsened to the point that she is no longer capable of making her own medical decisions, and she has begun to experience difficulty swallowing solid foods. Three months ago a daughter of Mrs. Potter, her Power of Attorney, consented to have her mother be provided a pureed diet in order to reduce the risk of choking. At present time, however, this daughter believes that the pureed diet is affecting the quality of her mother’s life (even though Mrs. Potter has not expressed this herself). After being completely informed of the risks and benefits, she requests that her mother be given solid foods. The staff feel uncomfortable with the daughter’s request due to the real possibility that Mrs. Potter will choke on solid foods, and are unsure of what to do.

    What are some of the ethical issues in this case?

    Does a resident have the right to live at risk?

    Does a substitute decision-maker (SDM) have the right to consent to their loved one living at risk? Does it matter if this is what their loved one would have wanted?

    What mechanisms can be implemented to address the potential moral distress of staff?

  • Case 5

    Mrs. Green, a 75-year-old patient with renal failure, currently on dialysis, who also has COPD, moderate dementia, diabetes and a new diagnosis of stage one breast cancer. There is also a past history of depression according to the family. She has been admitted to your ICU after falling down her stairs at home and is in critical condition with multiple fractures to her hip, ribs, wrists and neck. Mrs. Green does not have the capacity to make her own medical decisions and has recently started to refuse eating. Upon discussion with GI Specialists, the team agrees that the patient is not an appropriate candidate for a PEG (feeding) tube. The patient’s daughter, who is her POA, insists that the you proceed with the placement of the PEG, stating that if the tube is not placed she will contact her lawyer and proceed with legal action against the physician and hospital.

    What are some of the ethical issues in this case?

    Do we know the patient’s wishes, or values?

    Will the fact that the team feels the patient is not medically appropriate (considering risks, benefits, and likelihood of success) for a PEG tube be the deciding factor? That is, can the daughter demand the PEG tube and expect that the team provides it?

  • Case 6

    Wilson, a 51 y.o. male patient, is admitted to the Intensive Care Unit in critical condition after a motor vehicle accident. He presented unconscious and is therefore unable to make his own medical decisions. The family of this patient provided a detailed formal advance directive which indicated that in the event of a traumatic injury such as this one, where the outcome is uncertain, the patient would consent to aggressive medical intervention in an attempt to stabilize and determine the severity of his injury. Life-sustaining interventions were therefore pursued.

    After a myriad of test and a set of neurologic assessments were performed, it was determined that an anoxic brain injury occurred and it was not clear whether the patient would ever regain consciousness. The team needed some time to clearly establish a diagnosis, and the family members were kept informed of any progress that was made.

    Several weeks passed as the patient stabilized, and the health care team was finally confident that the patient had met the criteria for being in a Persistent Vegetative State, a diagnosis that was presented to the family. According to the advance directive, if the patient were ever in a situation where their continued existence would be in such a state, he would want all life-sustaining intervention withdrawn, and be allowed to die. The family (spouse is no longer in the picture, 18 y.o. daughter, 20 y.o daughter, and 14 y.o. son) are presented with this formal diagnosis of PVS and are willing to continue to assume the responsibility of SDMs. The 14 y.o. son is adamant that his father is a ‘fighter’ and demands the team continue to ‘do everything possible’, and provide the most aggressive care they can. The 18 y.o. daughter agrees with the son, but the 20 y.o. daughter wants to respect her father’s wishes and refuse further life-sustaining measures.

    What are some of the ethical issues in this case?

    Who is(are) the designated SDM(s)?

    Who do we listen to when they disagree?

    Can the SDM(s) consent to a decision that would mean the death of the patient?

  • Case 7

    A 75-year-old healthy male was working on the roof of his house when he slipped and fell 10 ft. to the ground. He was knocked unconscious. When the paramedics arrived he was awake but confused. His vital signs were stable (e.g., Glasgow Coma Scale [GCS] score of 14). He was immobilized with a C-collar and backboard and taken to the ED. Shortly after arrival in the ED he became more confused, then sleepy. His GCS score decreased from 14 to 10. The attending emergency physician was concerned that perhaps the patient had a significant head injury and was in the process of arranging for a CT scan when the patient’s wife arrived. The patient’s condition continued to deteriorate, to a GCS score of 8. The emergency physician prepared to intubate him, but when she discussed this with the patient’s wife, the wife became upset and stated that her husband had a “living will,” which specifies that, if he became critically ill, he would not want any resuscitative interventions, including intubation.

    *From: Pauls, M. et al. (2002). Ethics in the Trenches: preparing for ethical challenges in the emergency department. CJEM, 4:1, Pg. 45.

    What are some of the ethical issues in this case?

    Was the patient adequately informed when they declared their wishes? Did they put these wishes into a particular context? That is, were they intended for reversible, or irreversible illness?

    Is the patient’s wife required to make a decision in the best interests of the patient? Who decides what is ‘best’?

  • Case 8

    A 90 year old female, Mrs. Ruth, from home with her daughter, is admitted to hospital after sustaining a hip fracture. She has a history of chronic obstructive pulmonary disease on home oxygen and moderate to severe aortic stenosis. (Obstruction of blood flow through part of the heart) She undergoes urgent hemiarthroplasty (hip surgery) with an uneventful operative course.

    The patient and her family are of Jewish background. The patient’s daughter is her primary caregiver and has financial power-of-attorney, but it is not known whether she has formal power of attorney for personal care. Concerns have been raised to the ICU team about the possibility of elder abuse in the home by the patient’s daughter.

    Unfortunately, on postoperative day 4, the patient develops delirium with respiratory failure secondary to hospital acquired pneumonia and pulmonary edema. (Fluid in the lungs) Her goals of care were not assessed pre-operatively. She is admitted to the ICU for non-invasive positive pressure ventilation for 48 hours, and then deteriorates and is intubated. After 48 hours of ventilation, it was determined that due to the severity of her underlying cardio-pulmonary status (COPD and aortic stenosis), ventilator weaning would be difficult and further ventilation would be futile.

    The patient’s daughter is insistent on continuing all forms of life support, including mechanical ventilation and even extracorporeal membranous oxygenation (does the work of the lungs) if indicated. However, the Mrs Ruth’s delirium clears within the next 24 hours of intubation, and she is now competent, although still mechanically ventilated. She communicated to the ICU team that she preferred 1-way extubation (removal of the ventilator) and comfort care. This was communicated in writing to the ICU team, and was consistent over time with other care providers. The patient went as far to demand the extubation over the next hour, which was felt to be reasonable by the ICU team.

    The patient’s daughter was informed of this decision, and stated that she could not come to the hospital for 2 hours, and in the meantime, that the patient must remain intubated.

    At this point, the ICU team concurred with the patient’s wishes, and extubated her before her daughter was able to come to the hospital.

    The daughter was angry at the team’s decision, and requested that the patient be re-intubated if she deteriorated. When the daughter arrived at the hospital, the patient and daughter were able to converse, and the patient then agreed to re-intubation if she deteriorated.

    What are some of the ethical issues in this case?

    Who should make decisions in this situation? Should the ICU team have extubated the patient?

    Do religious beliefs constitute a justification for demanding treatment when it is not indicated?

    Does the change in the patient’s decision mean that she lacked the capacity to make the decision in the first place, or that she was not well informed?

  • Case 9

    A 30-year-old female who is 37 weeks pregnant is admitted under a “Form 3” to inpatient psychiatry for acute psychosis, severe substance abuse, and uttering death threats about her unborn child. (A Form 3 allows the patient to be held for up to two weeks.) After being re-assessed by Psychiatry, progress notes indicate that the patient is “legally competent”. Some of the nursing staff have voiced that they disagree and that she is not always capable of making informed consent decisions related to herself and/or her fetus.

    Several days into her admission, the patient begins to experience mild contractions. The staff have many questions: What is the birthing plan? Can patient consent to one? How will patient rights be protected? How will the OB GYN and Nursing Staff be protected? How will the baby be protected?

    OBGYN states she wants patient to consent to caesarian section (C/S), as it is felt this is safest for the patient, the unborn baby, and the staff involved.

    At a visit on day 4 of admission, Social Work feels that the patient now wants to protect her unborn baby from harm. In addition, they believe that it would be a great time to have an open conversation about plan of care with the patient. The OBGYN and SW visited the patient to ensure she was able to understand, and the OBGYN determined at this time that the patient was capable to provide consent. The patient decided to sign for caesarian section, if necessary.

    At this point, the team and patient made the decision to investigate who the substitute decision-maker would be, should the patient again lose capacity. Joint decision makers were found, in the patient’s parents, who were listed as next of kin. They were asked to jointly make/ agree upon a plan of care for both their daughter and their unborn grandchild. The patient remained on inpatient psychiatry unit until the baby was born two weeks later, by caesarian section.

    What are some of the ethical issues in this case?

    Should the substitute decision-makers (SDMs) have been present earlier in this admission? Who was providing consent for the patient, when incapable, when the SDMs were not involved?

    What rights does the fetus have under the law?

    While the patient agreed to C/S in advance, what happens if she changes her mind in the moment?

  • Case 10

    73-year-old female admitted to hospital with aspiration pneumonia and sepsis. Past medical history of multiple CVA’s, PEG tube feeding, multiple pressure ulcers. Patient able to open eyes but not able to follow any commands or respond verbally. Patient came to hospital from home with her wife. On admission, the wife was adamant that the patient be a full code. Wife seemed to be unclear regarding patient’s current medical/functional condition, and the health care team felt that due to unrealistic expectations of the wife, the patient was suffering. The team was struggling with the goals of care that were demanded. Goals of care were only changed when a new physician took over the care of the patient, and was willing to intervene.

    What are some of the ethical issues in this case?

    Must the physician/health care team acquiesce to all demands by a substitute decision-maker? What were the reasons she provided for wanting “full code”?

    What would the patient want in this case if she could tell the team? What would it mean to support her wishes?

    What reasons were given by the first physician to not make the patient full code? And from the second physician for agreeing to full code?