97. Case: Surgery, Supported Decision Making and Capacity

Alex is a 27 year old resident in a supported living facility.  She has a diagnosis of developmental delay.  She is close with her younger brother, Anton.  Alex has identified Anton as someone who helps her to make decisions.  The organization that runs the facility where Alex lives has recently adopted a policy in favour of using supported decision making whenever possible.

Alex has a number of cavities and pain in her teeth is interfering with her ability to eat a wide range of foods.  She eats a soft food diet, and the staff at her facility have raised concerns about the long-term health effects of both untreated cavities and the soft food diet.

After some negative experiences in childhood with blood draws that included being held down and restrained, Alex is intensely afraid of needles and white coats.

Anton has had discussions with Alex about different options that the local dentist can provide, but Alex is adamant that she doesn’t want any dental interventions.  Alex says she will just wait until all her teeth fall out and then get dentures.  She says she’d rather deal with the long-term consequences of eating the soft food diet than face a dental appointment.  Anton observed some of Alex’s interactions with medical care when they were children, and confirms that the experiences were harrowing.

Alex and Anton’s mother is listed as Alex’s substitute decision maker, and the staff feel that Alex’s mother would be willing to authorize sedation and surgery to extract the teeth so that Alex could be fitted for dentures and return to eating a normal, varied diet (which she was happy with before her teeth started hurting).

Some staff members see this is a situation where concerns about Alex’s well-being should override the principled commitment to supported decision making.  They have identified this tension as causing some of them moral distress, and have requested support from the ethics committee.


Questions:

  • What will make this case clinically challenging?
  • What will make this case ethically challenging?
  • How might the ethics committee support the team in dealing with their moral distress?
  • What would change (if anything) if Alex hadn’t had the experience of being restrained for blood draws as a child?
Advertisements

95. Case: Conventional vs Chinese Medicine

Lisa Chun is a 12 year old recently diagnosed with Crohn’s disease.  She arrived as a refugee from China five years ago with her parents and her younger brother.  She has integrated well into the community and is successful in school.  She often acts as an interpreter for her parents.

Lisa is prescribed corticosteroids and biologic therapies, but she states that she would prefer to pursue treatment with traditional Chinese medicine (TCM), consisting of acupuncture and herbs.  Her parents indicate that they support her in this choice. Lisa’s parents have previously expressed discomfort about the diagnostic tests that Lisa underwent and Lisa and her family have missed a few appointments, which have had to be rescheduled.

The team is concerned about the long-term effects of not treating with conventional therapies, given that Lisa is very small for her age and is not displaying signs of puberty.

Some members of the team who have worked closely with Lisa feel that she has capacity to make this decision.  They believe that her reasoning, based on belief that TCM treatment is better able to respond to the way that Crohn’s has manifested in her body, is appropriate.  Other members of the team feel very uncomfortable with allowing her to refuse conventional therapy altogether, although they say they are willing to explore integrating TCM with conventional approaches.

Finally, certain team members are concerned that they will “lose” Lisa and her family and worry that requiring a capacity assessment for Lisa (or her parents) will irrevocably damage the relationship.

Concerns have also been raised about whether there’s an obligation to contact Child Welfare if Lisa and her parents continue to refuse conventional therapy.

The team has requested support from the ethics committee to help them work out how to approach this situation.


Questions:

What will make this case clinically challenging?

What will make this case ethically challenging?

How might the ethics committee support the team in addressing these challenges?

What would change (if anything) if Lisa and her parents came from Estonia instead of China?

93. Case: End of Life with Dementia

Mr. Shah lives in a continuing care facility. A nurse recently commented; “My patient, Mr. Shah, has an advance directive that he wrote last year and that requests medical assistance in dying when he is no longer able to recognize his wife. His dementia has worsened quickly and recently he’s asked who his wife is after she visits, although he’s happy with her when she’s here. Are we obligated to do anything about his request for medically assisted death?”

60. CASE: Health Care Providers Under Quarantine

My story starts in early April, during a routine day shift in our minor care area. A previously well middle-aged man, recently returned from Hong Kong, presented with fever. Because SARS was already recognized and we’d gone through the recent experience of a crash intubation with our first case at Vancouver General, this patient was isolated at the triage area and we gowned and masked to examine him. Apart from a temperature of 37.8°C, his vital signs were normal and he looked well. He had no other symptoms, and his physical examination, CBC, urinalysis, and chest x-ray were all normal. Although the patient did not fulfill the case definition of SARS then in existence, I kept him in isolation just in case. When I went in to give him discharge instructions, I did not wear a mask and stood just inside the doorway, about two meters from him. Almost predictably, he returned with the full SARS syndrome just over 24 hours later. And wouldn’t you know it, by then, the case definition of SARS had changed!

I briefly wondered if I could pretend I was not in his room unmasked, but the thought of potentially disseminating a lethal virus persuaded me to do my civic duty and tell my boss. Two hours later Public Health phoned to inform me I was officially quarantined. Needless to say, my husband, also a physician, was incredulous and my kids were terrified. I thought it was kind of funny for the first day, like someone was playing a bad joke. Then the reality began to hit home, and I can tell you the reality was difficult to live with. This is what Public Health told me.

  • I must stay inside my house (preferably within my bedroom) 24 hours a day
  • I must not touch anyone in my family
  • I must wear an N95 mask if anyone is in the same room as me
  • I must not prepare uncooked food for my family
  • I must not sleep with my husband
  • I must use a separate bathroom
  • I must not touch anything in the house that the kids might later touch
  • I must not use the family computer or the main phone
  • I cannot have outside visitors
  • I cannot shop for groceries
  • I cannot go for a walk

The quarantine requirements were not voluntary, but were enforced by Public Health, who contacted me daily to gauge my cooperation. If I did not comply, it was clear that I would be legally compelled to do so. All this took place under the shadow of potentially transmitting SARS to my family, the people I love more than anything in the world. My nine days of quarantine were a blur of extreme boredom, some highly emotional episodes, and a re-evaluation of what I do for a living. One of our daughters moved out for the duration. Another celebrated her 16th birthday without a hug, cake or present from her housebound mother. And my son told me daily how much he wanted a snuggle. I felt guilty that my colleagues, all of whom are already overworked, had to pick up extra shifts to cover me during my enforced absence. As if all this were not enough, it slowly dawned on me that I wasn’t earning any income, and would have to put in extra shifts after my quarantine was over. I decided I never wanted to see another N95 mask again…

What did I learn from my experience? First, it is very isolating and lonely to be isolated. I hugely appreciated the calls and emails I received from my colleagues while I was off. It helped enormously to know they were thinking of me, and didn’t think this was my fault. Second, I think all emergency physicians should consider the financial implications of a sudden enforced quarantine. None of us have disability insurance that would commence quickly enough. To be under quarantine is difficult enough without the added burden of a financial penalty. Although I suffered an occupational exposure, I was not covered by Workers’ Compensation. I believe we need to negotiate with our hospitals and governments to put financial packages in place. Many hospitals are starting to compensate self-employed health care workers for income missed during quarantine. I would go further and suggest a per diem rate for days confined due to occupational exposures. Although no one can compensate me enough for nine lost days of my life, a token payment certainly wouldn’t hurt. Finally, as emergency physicians we do a far more difficult and noble job than I had ever realized. The consequences of what we do to care for our patients and protect the public are risks that put ourselves and our families in potential danger. This is something we never think about or acknowledge, but maybe we should. And maybe we should celebrate ourselves more than we do. I have huge admiration for my emergency medicine colleagues who had far worse exposures than I did in the early phase of the SARS crisis.

  • What values are involved here and for whom?
  • What ethical considerations have to be balanced in such quarantine situations? How is the most appropriate balance achieved?
  • How would you respond to this physician’s concerns? Do you feel there is any legitimacy to her complaints?

Some Values and Ethics Issues to Consider

  • Duty to provide a safe work environment
  • Duty to provide care
  • Respect for individual liberty
  • Community/ public health ethics
  • Consent
  • Disclosure of adverse events
  • Health care provider relationships
  • Risk
  • Patient safety
  • Compliance with policy
  • Disclosure of adverse events
  • Non-maleficence
  • Privacy and confidentiality

22. CASE: Double Effect?

The following call comes in to the ethics line:

“Hi. It’s Celine from Oncology. We have a patient here who is in the end stages of lung cancer and is in a lot of pain. The patient and his family are strongly Catholic. The patient’s pain doesn’t seem to be well-controlled. But the family won’t authorize increasing his dose of hydromorphone because they are concerned, based on the physician’s description of possible side effects, that they will be artificially shortening his life. One of the family members accused the team of trying to euthanize the patient. This is causing the team a lot of stress. Can the ethics committee help us out with this?”

  • How will you respond to this request?
  • Who would you speak to in order to gather the necessary information?
  • What are the conflicting values in this situation?


Some Values and Ethics Issues to Consider

  • Spirituality/ religious beliefs
  • Capacity
  • Patient-family relationships
  • Respect for patient autonomy
  • Substitute decision-making
  • Moral distress among health care providers
  • Respect for professional integrity
  • Professional competence
  • Beneficence and non-maleficence
  • End-of-life decision-making

21. CASE: Balancing Concerns

“Where’s the door to my bathroom? Can’t a man get some privacy?”

“Uh oh, that’s Elias again. We’d better make sure he’s alright.”

“How many times are we going to have to go through this with him? Maybe we should just put the bathroom door on again.”

“The only problem is that on his ‘bad’ days, he often gets confused and trapped in the bathroom. Don’t you remember how long it took us to calm him down after that happened about five weeks ago? He was so worked up! Elias and his family agreed to taking the door off at the meeting about this a couple of weeks ago. It seemed the safer way to go. The problem is that Elias can’t always remember that this is something he said he wanted.”

“Well, that must have been on one of his ‘good’ days. We don’t seem to be having so many of them now. I’m finding it hard to have this conversation with him every shift!”

  • What are the ethics issues here?
  • Are there other options that could be considered in this case?
  • How would you suggest the health care team work through this issue?
  • Should Elias’ safety take precedence over his dignity?

Some Values and Ethics Issues to Consider

  • Capacity
  • Respect for human dignity
  • Quality of life
  • Living at risk
  • Patient safety
  • Beneficence and non-maleficence
  • Substitute decision-making
  • Organizational policy

18. CASE: When the “Truth” is Painful

Mrs. Sally Parrot, a 73-year old widow, has mild dementia of a presumed neurovascular type. She resides in her own small apartment in Serenity, a private continuing care community in Bedford, where she receives some assistance with housekeeping, meal preparation and organization of her medications. Sally is actively engaged in Serenity’s structured activities and, in particular, enjoys participating in the music program and walking group. One of her two children, Lorna, resides in Halifax and visits her once weekly.

Sally was recently diagnosed with slowly progressive, metastatic bowel cancer. After talking it over with Lorna and her son Fred, Sally decides to go ahead with a series of recommended palliative treatments: a short course of chemotherapy, de-bulking bowel surgery and low dosage radiotherapy.

After the chemotherapy, which she has tolerated well, Sally is admitted to hospital for her surgery, which involves removal of a section of large bowel that contains the primary tumour. Unfortunately, she develops post-operative delirium, which has been slow to clear over the past few weeks in hospital. At the present time, she is reasonably clear-headed in the morning, but her cognition deteriorates in a ‘sun-down’ fashion as the day progresses.

Seeing how her mother has reacted to surgery, Lorna begins to wonder if the planned third phase of treatment, i.e., palliative radiotherapy, is the still the way to go. She decides to wait until her brother arrives later that week from Australia to sort this out. In the meantime, during the late afternoons and evenings, Sally has begun to ask her health care providers about why she is in the hospital. They tell her that she is in hospital for surgical treatment of her bowel cancer. However, Sally does not retain information for more than ten minutes late in the day due to her delirium-related confusion, so each time the direct care nurses inform her that she has cancer in response to her question, she responds in the same way – with surprise and significant emotional distress.

The nurses consider truth-telling in the disclosure of health information to be an important professional value and practice. However, they begin to wonder whether they are doing more harm than good in responding to Sally’s repeated questions in an honest and forthright way.

A group of nurses who are experiencing moral distress in these challenging circumstances get together and, with the knowledge of their health services manager, contact the clinical ethics service to make a formal request for ethics support.

  • What are the ethics issues in this case?
  • How would you work through the issues with the health care team?
  • Is withholding the truth from a patient ever the right decision?
  • Should alleviating the distress of the patient and/or the health care team be more of a priority than upholding the value of truth-telling?


Some Values and Ethics Issues to Consider

  • Honesty, trust and truth-telling
  • Capacity
  • Substitute decision-making
  • Respect for patient autonomy
  • Moral distress among health care providers
  • Patient-family relationships
  • Respect for human dignity
  • Patient-centered care
  • Respect for professional integrity
  • Beneficence and non-maleficence

15. CASE: Acceptable Judgement?

Sara Thornton, an unemployed 19-year old woman, lives with her 28 year old sister, Fran, and Fran’s boyfriend, Alan. Both sisters were diagnosed with bipolar I disorder in their mid-adolescence. They are both estranged from their alcoholic mother, the only living parent.

Fran has learned to manage her illness reasonably well through lifestyle changes, participation in group psychotherapy sessions, and the regular use of mood stabilizer medications. She has a stable, functional relationship with Alan and works full-time as a paralegal at a local law firm.

Sara, on the other hand, ‘loves to party’ and has an established pattern of binge drinking to dangerous intoxication. She snorts cocaine several times a month. Despite her older sister’s advice, she often takes ‘drug holidays’ from her mood stabilizer medication in order to enjoy the up-shift phase of her mood cycle and to ‘get a lot of stuff done.’ She has a rather stormy relationship with her current clinical psychologist at the Bipolar Clinic of the local psychiatric hospital.

Fran was informed about psychiatric advance directives at her last visit with her private psychiatrist. She decides to complete one and provide the instruction that she wishes to be treated with antipsychotic medications and ECT if these treatment modalities are considered necessary by her psychiatrist in the event that she loses capacity and is hospitalized for her mental illness. She has a past history of refusing medications while in full-blown mania and this has delayed her recovery from these episodes. She names Alan as her proxy substitute decision-maker.

Fran encourages Sara to write a psychiatric advance directive (PAD) as well. Sara decides to name a friend of hers, who is also a person with mental illness, to be her substitute decision-maker. Because she had a bad side-effect experience with the use of an atypical antipsychotic medication during one of her manic episodes, Sara indicates in her PAD that she does not wish to receive antipsychotic medication if and when she loses the capacity to make her own health care decisions during a manic episode. Following hospital policy, Sara’s social worker forwards her completed PAD to her electronic health record.

Three months later Sara presents to the psychiatric hospital ED in full-blown, acute mania. She is threatening to kill her new boyfriend. She is admitted to hospital on an involuntary basis. The psychiatrist on her clinical unit, Dr. Control, knows both sisters from previous hospitalizations and calls Fran about her sister’s emergency admission. With support from Fran, Dr. Control challenges the validity of Sara’s PAD claiming that, in all likelihood, Sara lacked capacity when she made it. He orders intramuscular antipsychotic medication for management of Sara’s acute mania. The nurse preparing this medication for injection notices that Sara’s PAD was witnessed by her family doctor. She calls the ethics support line.

  • How would you handle this request?
  • What issues need to be considered?
  • Who should be making care decisions in this case?
  • Who should determine the validity of a personal directive?

 

Some Values and Ethics Issues to Consider

  • Capacity
  • Substitute decision-making
  • Respect for professional integrity
  • Respect for patient autonomy
  • Professional competence
  • Care for the vulnerable
  • Beneficence and non-maleficence
  • Advance care planning

11. CASE: Truth-Telling

The patient is an 89-year-old gentleman with moderate dementia and a history of COPD, swallowing difficulties, a CVA, and recent aspiration. The investigation of his aspiration uncovered a lesion in his lung- the physicians felt it was likely to be cancerous. Thoracic surgery verified that it was lung cancer and a determination was made that he would not be a candidate for surgery or chemo, but potentially for radiation if he were to become symptomatic.

Sometime later, the patient underwent a CT scan, which showed that the lesion had not grown much. The attending physician believes the patient is more likely to die from aspiration pneumonia than his cancer.

The patient’s son does not want him to be told about the cancer for fear he might become depressed and “give up.” According to the physician, the patient can engage in discussions about his health, i.e. diet, etc., but would need assistance from his son for any major decisions.

The health care team is questioning whether they are doing the right thing by following the son’s wishes and not telling the patient about his cancer diagnosis. They put in a call to the ethics line.

  • Identify the competing values in this case
  • How will you proceed with this request?
  • Who should make the decision about what information the patient receives?
  • How does one really know what is best for a patient?
  • Is withholding health care information from a patient ever the right decision?


Some Values and Ethics Issues to Consider

  • Honesty, trust and truth-telling
  • Respect for patient autonomy
  • Patient-family relationships
  • Capacity
  • Moral distress among health care providers
  • Respect for professional integrity
  • Substitute decision-making
  • Beneficence and non-maleficence

9. CASE: Right to Treatment

A 54-year-old male patient has been treated for cancer for 2 years, but his illness has not responded to the major lines of treatment. He has been admitted to hospital with worsening nausea and vomiting, abdominal pain, and failure to thrive.

A CT scan showed progression of disease as evidenced by new ascites along with peritoneal and bone metastasis. He remains on dialysis, but otherwise the treatment plan is symptom management.

His physicians have held several conversations with the patient and his family (wife and children) regarding his “code status.” The patient and his wife want him to be a “full code,” but the physicians feel it is not in his best interests given his terminal illness; they feel it will actually be harmful to him. ICU physicians were consulted and agree.

The patient and his family are Muslim and believe that everything needs to be done to prolong his life, otherwise they will “displease their God”. The patient’s wife is under considerable pressure from her husband’s brother to ensure everything is done to save him.

The patient is currently a full code and “stably ill”, but the physicians and nurses are worried about what will happen in the event he suffers a cardiac and/or respiratory arrest.

  • What are the competing values in this case?
  • How might you respond to this request?
  • What additional information could be shared between the patient/family and health care team to help resolve this issue?
  • What role does the patient’s faith play in this case?

Some Values and Ethics Issues to Consider

  • Respect for autonomy
  • Patient-family relationships
  • Spirituality and religious beliefs
  • Substitute decision-makers
  • Respect for professional integrity
  • Capacity
  • Pluralism and diversity
  • Beneficence and non-maleficence
  • End of life decision-making