85. Case: Adam’s Story

Adam Snowdon, a 16 year-old Sydney boy, was diagnosed with ALS (Amyotrophic Lateral Sclerosis) 18 months ago.  The disease has progressed rapidly over the past three months and over this period Adam has quickly begun losing the ability to use his right arm to the point now where it is no longer effectively functional.  He is also beginning to have difficulty standing and walking and is showing early signs of respiratory, swallowing and speech problems.  His doctors speculate that Adam will die within a year and that in the months prior to that he will likely become “locked in” and unable to communicate at all.

Adam has always been a rambunctious boy.  He has had numerous behavioral issues throughout his childhood, proving to be quite a handful for his parents.  He has run away from home several times, has been suspended various times and expelled from two schools. Adam has also been detained by the police on four occasions for possession of alcohol and marijuana.

Adam is currently living at home in Sydney with his mother Nancy Snowdon and older brother David who just turned 17.  Nancy works part time as a school librarian.  She has full-time custody of her two sons.  Nancy has been suffering from clinical depression for several months now.  She has been under emotional strain since Adam became ill.  She is currently taking antidepressant medication and is receiving counseling from a chartered psychologist.  Through this treatment appears to be helping Nancy, she is still struggling to cope.  On a few occasions she has missed appointments with Adam’s doctor, simply feeling unable to face the situation on her “bad days”.  On those occasions Adam missed his appointments altogether as he shows no initiative in attending his medical appointments on his own.

Adam’s health care providers have not been able to establish a trusting relationship with him.  They find it generally difficult to engage him in conversation, and he is especially uncomfortable discussing the ALS.  He refuses to discuss the details of how his disease will progress or his preferences regarding options such as ventilators etc.  He has, however, stated emphatically that he has no intention of allowing them to “put him in the hospital do die”.

Adam’s father, Ted Snowdon, is an engineer in Alberta.  He and Nancy divorced relatively amicably when Adam and David were nine and ten respectively.  Mr. Snowdon has not played much of a role in the lives of both of his sons after the divorce but he visits every summer and they all go camping.  He has remarried to Clarice Snowdon who has shown little interest in the boys.  Since Adam’s diagnosis, Mr. Snowdon has been flying out to Sydney regularly to be involved with decisions around organizing care for Adam. Mr. Snowdon feels strongly that decisions about Adam’s future care need to be made immediately.

Dr. Kerrigan is Adam’s family physician.  She is concerned that Adam’s condition is getting worse very rapidly and is anxious about the decisions that will have to be made about Adam’s care.  In particular, Dr. Kerrigan is worried about the relationships within the family.  She knows that Mr. Snowdon feels strongly that his son should be hospitalized and eventually ventilated.  He has stated that Adam is “too young” to know what he wants and is worried that Nancy is not able to handle keeping Adam at home, even with home care support.  Dr. Kerrigan is concerned that Mr. Snowdon will dominate the decision-making process at the critical time and that Adam’s and his mother’s wishes may be overridden or altogether neglected.  Beyond her concerns about the family dynamics, she is uncertain as to Adam’s decision-making capacity – and Mrs. Snowdon’s for that matter – and is also unclear on the more basic question of who ought to be making decisions about Adam’s care.

Since Adam became ill he has been seeing a neurologist at the local hospital, Dr. Watson, and Dr. Kerrigan are in touch frequently regarding Adam’s care and have discussed Dr. Kerrigan’s concerns around the family dynamics and the decision making that will need to occur in providing end of life care for Adam.  Dr. Watson has requested a consult from the hospital ethics committee.  Mr. Snowdon and his wife have flown in from Calgary just for this meeting.  Adam was asked to participate in the meeting but he flatly refused, saying he wanted to spend time with some of his friends instead.

Participants’ Roles:

Ethics consultant #1 (facilitator)

Ethics consultant #2 (ethics facilitator)

Ethics consultant #3 (recorder)


Nancy Snowdon (Adam’s mother):  Very concerned about her son’s welfare.  Feeling overwhelmed, isn’t sure what to do.

Mr. Ted Snowdon (Adam’s father):  Skeptical of Adam’s decision making capacity and can’t understand why Adam is acting the way he is.

David Snowdon (Adam’s 17 year old brother):  David is scared, angry with both parents, worried about Adam, and worried about his own life. Most of all, he wants peace for Adam.

Dr. Watson (neurologist):  wary of the complex relational issues at stake, as well as the challenges of making decisions for young ALS patients like Adam.  Wants to make decisions as soon as possible before Adam is no longer able to express his own views.  Feels in over his/her head, wants the committee to get this sorted out as much as possible.  Dr. Watson has been developing an interest in bioethics and is considering becoming a member of the ethics committee.

Dr. Kerrigan (family physician):  Concerned about the toll this is taking on Nancy, Adam and David.  Worried that Mr. Snowdon is driving discussions around care.

Jamie Lee (patient services coordinator):  Has been taking a bioethics course and is eager to apply her/his newly developed skills.

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77. Case: Accommodating Requests: Which Differences Make a Difference?

 

Michelle Yoder is 8 months pregnant and a member of the Amish community.  She requests that only female health care providers and staff be involved in providing her care during labour and delivery.

Michelle Federov is 8 months pregnant.  She requests that only white health care providers and staff be involved in providing her care during labour and delivery.

 

Discussion:

  • What are the ethical concerns raised by these cases?
  • How are your responses different to these two scenarios?
  • How do you think health care organizations should respond to requests like these?

Resources:

65. Case: Conflict in an Ethics Consultation

The next three cases are from our Advanced Clinical Consultation Workshop facilitated by Paul Hutchinson, Imagined Spaces. These cases were submitted to us from Paul.

I find it is often team conflict that can lead to an ethics consult and this will find its way into the consultation space. This can present in a couple of ways:

  • Staff will become quiet and hesitant to speak and it can become difficult to deal with the real issues.

OR

  • Conversation will become heated and emotion laden.

One case I remember was in dealing with a young mom whose child had been hospitalized since birth. Part of the reason for this long hospitalization was due to an error in care. This was a very young mom with two other children.  She had very few community or family resources and so proper housing and resources for care of her children were issues.

Staff had very differing views of this mom and her care of her child as well as her behaviors in hospital (she would sometimes stay out late at night with friends and on return could be quite noisy). Some staff felt she avoided caring for her child and was leaving all the responsibility to staff. There was clearly a divisiveness with some staff feeling she was simply not a good mom and would never be able to care for her child and in some cases disempowered her by taking over care. Other staff felt this mom was doing the best she could given her age, education, and socioeconomic status and were very protective of her. Staff were being directed to document and be vigilant re anything that might bring doubt on her ability as a parent and perhaps have her children taken from her.

It was a very difficult situation, and it was ongoing when the consult occurred. It was clear values were being challenged and staff felt very strongly. Many staff felt that were being bullied and pressured by other professions and each other and this was a difficult consult to facilitate.

64. CASE: Implementing an Anti-Obesity Strategy

The local health district is in the final stages of adopting a comprehensive organizational anti-obesity policy. Its development was led by a working group of diverse stakeholders from across the district and included an extensive consultation process.

One aspect of the policy that generated a lot of discussion and debate at the working group was the suggestion that messaging should be designed to increase stigma and social pressure around obesity.  This strategy was defended recently in a leading bioethics journal and has been implemented in other jurisdictions.  Ultimately the group was convinced to include this suggestion in the policy because of the success that such messages had in decreasing smoking rates.

Prior to ratifying the new policy, senior leadership requested that the district medical advisory committee review it.  One of these reviewers is clearly upset by the policy; he sent feedback in very personal terms implying that increasing stigma and social pressure around obesity made the policy unreasonable and unethical.

  • What values are relevant to the policy issues under consideration?
  • Why would the reviewer deem the policy to be unethical?
  • What are the conflicting values among the reviewer and the policy makers?
  • Is there other information you would like to have before responding to the reviewer?
  • How will you (the working committee) respond to the reviewer and why?

Some Values and Ethics Issues to Consider

  • Empathy
  • Respect for autonomy
  • Respect for dignity
  • Community health ethics
  • Living at risk
  • Organizational ethics
  • Compliance with policy
  • Social justice
  • Social determinants of health
  • Responsibility for health

62. CASE: Formula Feeding Resource Book

Andrew Godwin is a relatively new staff person working for Public Health. He is learning about the WHO Code of Marketing Breastmilk Substitutes and the importance of promoting breastfeeding as a norm in Nova Scotia, as part of the Healthy Eating Strategy.

He has received several phone calls from new parents asking him why the province’s formula feeding resource book is not online and requesting him to consider adding it to the electronic resources. What should Andrew do?

  • Identify the values that are relevant to this discussion and select the ones that you think should guide Andrew’s response. 
  • Would it be appropriate to post this booklet online? Why or why not?

Some Values and Ethics Issues to Consider

  • Duty to provide care
  • Honesty, trust and truth-telling
  • Respect for autonomy
  • Transparency
  • Community/ public health ethics
  • Compliance with policy
  • Patient-centred care

61. CASE: Ending the Fluoridation of Water – A Public Meeting

The local town council has received a petition signed by more than 500 residents requesting the discontinuation of fluoride in the town’s water supply. Before making a decision on the matter, the council has decided to hold a “town hall” meeting to seek more input and help to educate its members and the audience about the evidence on both sides of the debate.

As the Public Health officer for the area, you have been invited to be a member of the panel in charge of this meeting. Other panel members include the mayor, a local dentist, a family doctor, and the two residents who initiated the petition. On the night of the meeting, the local fire hall is at capacity; the mayor who is chairing the panel asks the two residents to begin the discussion by presenting their concerns with regard to water fluoridation. They make the following remarks:

Resident 1: “Everyone says fluoride in the water prevents cavities. What about looking at what causes the cavities in the first place- junk food, pop, sugary snacks and juices are all stuff that parents should be limiting. Why should we all be forced to ingest fluoride in our water because some parents aren’t doing their job? Like everything else, we are what we eat. Good health starts with what we put on the end of our forks- that is how I raised my children. In addition, a routine oral program and thorough brushing is key to any successful prevention.For those that want to provide their kids with fluoride, there are many readily available treatments and over the counter products.I am a victim of too much fluoride because I chose to eat healthy and drink lots of water. Fluoride severely damaged my thyroid and I am now forced to take pharmaceutical drugs for the remainder of my life.

Fluoride is not only in our water (which is also absorbed through the skin), it is used as a pesticide on our food crops, and even organic food crops could be contaminated if watered with fluoridated city tap water. All beverages produced with water, reconstituted juices, contain fluoride, and for those that still receive fluoride treatments at the dentist, brush three times per day with fluoridated toothpaste and maybe even use fluoridated mouthwash, well, that is FAR MORE than any health organization (CDC, EPA or Health Canada) recommends.

I cannot remove fluoride from my water and am therefore forced to purchase distilled water to use for drinking and cooking. I am one of the lucky ones, as I am able to afford to do this. I was never asked if I wanted this industrial waste dumped into my water supply- it was a decision made for me without my consent or even any input. It was a decision made a long time ago and now it needs to undone.”

Resident 2: “I am for choice. So I would rather choose whether or not I drink a toxic chemical. I think that by giving me no choice, the city is not doing me any favours. I have done my own research, and there is very little credibility on the side that says “fluoridate the water.” Instead many experts say fluoride works best as a topical treatment. Bang on. Use it topically then, by choice, don’t force me to ingest it. I use a fluoride rinse and it has absolutely 100% made a difference in my dental health. I have not changed my diet or oral hygiene habits except for the addition of this rinse, but 4 years strong now with no new cavities. Cavities used to plague me with at least a couple new ones a year. I feel that this should be a personal choice, and if people are concerned about costs for poor communities/people then perhaps a subsidy for toothpaste or fluoride tablets is the answer (but only if those people want to purchase the items).One should also keep in mind the effect of excess fluoride on growing teeth. What if your child really likes water and ingests a lot of fluoridated water? Even dentists admit it’s only useful in the right doses. Fluoride is carcinogenic, so I would like to see statistics on cancer rates vs. fluoridation in the region. Plus, fluoride has been linked to lots of other serious conditions, but we are not told about all that – just that it prevents cavities. The jury is out on whether that is actually true. There are countries who do not add fluoride to their drinking water but their rate of cavities is as good or better than ours. So what is that about?! The town could be saving a ton of money each year by not putting fluoride in the water. It’s a smart move in my opinion.”

  • Identify the conflicting values that are relevant to this discussion and select the ones that will guide your response. What is the basis of your choice(s)?
  • As the public health officer, how will you respond to these statements?

Some Values and Ethics Issues to Consider

  • Respect for autonomy
  • Community/ public health ethics
  • Compliance with policy
  • Patient safety
  • Community relationships
  • Consent
  • Risk
  • Social justice

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

54. CASE: Professional Role

While doing a weekday home visit to an elderly patient, a VON nurse in a small community finds the patient’s son at home. The patient has mentioned that her son teaches at the local elementary school, but he has never been present during any of the nurse’s previous visits to the house.

On a weekday visit he appears to be drinking heavily and the patient seems uncomfortable and ill at ease.  During the next few weeks the son is there on several more occasions and appears to be either drunk or “hungover”. The nurse is also a member of the town’s school board.

  • What is this health professional’s responsibility to her patient? To her patient’s son?
  • What should her immediate concerns be?
  • What is her responsibility as a member of the school board?
  • How should she proceed in this situation?
  • Can/should this individual segregate her role as a nurse with her role as a school board member?
  • Should she mention what she knows about the son/teacher to her colleagues at the school board?
  • How are the ethics issues at hand affected by the rural setting?


Some Values and Ethics Issues to Consider

  • Professional boundaries
  • Duty to provide a safe work environment
  • Living at risk
  • Duty to accommodate
  • Duty to provide care
  • Community and family relationships
  • Respect for human dignity
  • Respect for professional integrity
  • Compliance with policies and procedures
  • Respect for privacy and confidentiality
  • Overlapping roles and responsibilities
  • Patient safety

52. CASE: Community Values

A patient in your rural community that you have treated for COPD for several years missed her last two appointments. When you speak with her after church, she indicated her husband lost his job as a logger and no longer has family health insurance to cover the cost of the treatments. She refuses to accept charity but does indicate she will be willing to clean your home and office as “payment” for your healthcare services.

  • Should a healthcare professional accept bartering as payment?
  • What ethics issues should be considered here?
  • How are these ethics issues affected by the rural context?
  • Should the health of the patient take precedence over compliance with your organizational policy and/or your professional code of conduct?
  • What other creative solutions are there that will allow the patient to receive the treatments?

 

Some Values and Ethics Issues to Consider

  • Social justice
  • Professional boundaries
  • Duty to provide care
  • Community and family relationships
  • Respect for human dignity
  • Respect for professional integrity
  • Compliance with policies and procedures
  • Respect for privacy and confidentiality
  • Overlapping roles and responsibilities
  • Patient-provider relationships
  • Equality of access

51. CASE: Confidentiality and Privacy

Joanne Baker, a nurse practitioner in a small community, prescribed a partial opiate agonist to a young man, Brian, for treatment of prescription opiate dependence. Brian is talented and plays on the same soccer team as Joanne’s son.

Three weeks later, Brian is found unresponsive after an overdose of opiates, requiring intubations and medical evacuation to a city three hours away. He recovered and didn’t want others in the community to discover that he had attempted suicide. He began to spread rumours that Joanne was incompetent and prescribed a medication that she didn’t know how to use.

Another patient brought up these rumors during his own appointment with Joanne. Joanne wishes she could set the record straight, and explain that Brian obtained opiates from a provider in a neighbouring city and had taken these in large quantities in a suicide attempt. She is unsure of how to discuss the situation without breaching Brian’s patient confidentiality.

  • How should Joanne proceed in this situation?
  • How can she clear her name/ reputation without breaching confidentiality?
  • What are the competing values in this case?
  • What role/ responsibility should Brian have in the outcome of this situation?
  • What is the specific ethics conflict or question in this case?
  • How is this ethics conflict affected by the rural context?
  • What resources are available to help Joanne address the situation?


Some Values and Ethics Issues to Consider

  • Professional boundaries
  • Community and family relationships
  • Respect for professional integrity
  • Compliance with policies and procedures
  • Respect for privacy and confidentiality
  • Overlapping roles and responsibilities
  • Patient-provider relationships
  • Professional competence
  • Transparency
  • Stigma
  • Vulnerability
  • Respect for human dignity