67. Case: What is Angela’s Choice?

Angela Flores is a six year old with some minor developmental delays caused by traumatic birth.  She has recently been diagnosed with a brain tumor and her prognosis is poor.  The health care team is trying to determine goals of care and a develop treatment plan.

Angela lives with and is cared for by her paternal grandparents, Jean and Rod, but there is no formal custody arrangement in place.  Angela’s parents have separated and her mother, Tina, has moved to Ontario to seek work on the understanding that she will send for Angela when she finds a job and an apartment.  Tina is in regular contact with the health care team by phone.  Angela’s father, Aaron, is sporadically involved in her life, coming and going unpredictably.

Angela’s grandparents are advocating for comfort measures only while Tina wants to pursue active, aggressive treatment and is asking whether there are any research studies that Angela could be enrolled in.  Aaron is currently in town and he wants to involve a homeopath in Angela’s care.

Jean and Rod appear to be frustrated with both Tina and Aaron and feel that they are best placed to make decisions for Angela.  Meanwhile, both Tina and Aaron emphasize that they are Angela’s parents and expect to be involved in decision making.  They get very upset when they perceive that decisions have been made without them.  There have been a couple of family meetings involving all four adults, and every time someone has stormed out of the meeting.

Jean and Rod are worried that Angela will be significantly distressed by he whole process of getting treatment as it will significantly disrupt her routine and there is another family member who recently died of cancer and Jean and Rod say that his treatment was painful, ineffective, and resulted in a “bad” death.  Jean and Rod are also very unwilling to involve Angela in any discussions about her diagnosis, prognosis, and treatment, saying that “there’s no way she can understand and it will just upset her.”

The health care team is also divided regarding what they believe are appropriate goals of care for Angela and some members who have worked with Angela for a long time are experiencing significant moral distress at the prospect of moving to palliative care.    They also aren’t sure how to approach conversations with the family given the level of conflict present, and are concerned that the conflict between the adults is interfering with making appropriate decisions for Angela.

How might you approach this situation?

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66. Case: Blood Transfusions

Joyce Skinner is a 38 year old woman with non-curative leukemia. She is the single mother of two children, ages 11 and 8, and her ex-husband is ‘out of the (parental) picture’. Since her leukemia diagnosis, Joyce has approached her progressive hematological cancer in an assertive manner, seeing it as her responsibility to fight to stay alive and look after her children for as long as possible. Over the past few years, her attending hemato-oncologist, Dr. Jones, has arranged for her to be a research participant in a variety of experimental chemotherapy trials, which have extended her life beyond what was initially anticipated. However, about 6 months ago, Joyce’s leukemia moved into a treatment-resistant phase and her medical regime is currently palliative in nature and intent. Joyce is now residing in a hematology clinical unit of a tertiary care hospital where she is followed regularly by a palliative care consultant, Dr. Miller. In the last 3 weeks, the frequency of blood transfusions required to keep Joyce’s hemoglobin at a low functional level has progressively increased such that she is now receiving transfusions every second day. Joyce is not eligible for transfer to the hospital’s Palliative Care Unit while blood transfusions are a component of her care plan. She is very weak and is confined to her hospital bed. Her children visit her regularly with their aunt, Cathy, who has assumed parental responsibility for them. They have missed a considerable amount of school time in the last few months.

Despite the honest information provided by Dr. Jones, Joyce is in some denial about her grim prognosis and strongly believes that she can continue to ‘beat the odds’. She remains reasonably clear-headed and is capable of making health care and treatment decisions on her own. She insists that Dr. Jones continue the blood transfusions indefinitely. Her sister and Drs. Jones and Miller are of the shared opinion that the transfusions should be discontinued and that Joyce should be transferred to the Palliative Care Unit.

Dr. Jones, who sits on the provincial blood management committee, is aware that there has been an exceptional demand on existing provincial blood resources in the last few weeks due to a number of major highway accidents. The hospital is chronically under-resourced. There are typically one or more patients waiting in the emergency department for admission to the hematology clinical unit.

 

 

  1. What do you think is important to Joyce (in terms of her personal values)? What do you suspect about her personality structure?

 

  1. On what basis, if any, could Joyce claim a right to continue receiving blood transfusions? What other ethics principles and values are at play in these circumstances?

 

  1. What weight in the decision making should be given to the clinical judgments of Drs. Jones and Miller?

 

  1. Should Cathy (as an engaged family member) participate and have some authority in the decision making? Would the nature of this authority change if Joyce loses capacity?

 

  1. Is ‘bedside rationing’ of limited health resources an appropriate form of health resource allocation?

 

  1. With their mandates to manage limited health resources prudently, should the Nova Scotia Health Authority and/or the provincial Department of Health & Wellness have a role(s) in such end-of-life decision making?

 

  1. Under what circumstances, if any, would it be ethical to deny Joyce’s request for further blood transfusions?

 

 

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

63. CASE: Breastfeeding Concerns

Natasha is 15 years old and you, an RN, are meeting her for the first time at a prenatal visit. Her boyfriend, Josh, is 17. Natasha is planning on feeding her baby breast milk substitute as she thinks it will be easier. She has heard that it is harder to lose “baby weight” while breastfeeding, and is worried about fitting into her bikini this summer. She also tells you that she has heard that breastfeeding makes breasts saggy and is worried that Josh won’t be attracted to her anymore. Her mother, on the other hand, is pressuring her to breastfeed.

  • What values are at play here and for whom?
  • Are there any ethics issues in this situation?
  • How would you continue the discussion with Natasha?

Some Values and Ethics Issues to Consider

  • Respect for autonomy
  • Patient-family relationships
  • Patient-centred care
  • Responsibility for health
  • Stigma and blame

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

59. CASE: HPV Vaccine for Boys

PEI is expanding its human papilloma virus (HPV) vaccination program to include grade six boys. Girls have been receiving the HPV vaccine since 2007. HPV is the most common sexually-transmitted infection among young adults. It can lead to genital warts and, in girls, cervical cancer. For boys it can also lead to cancers of the mouth, throat and genital area.

Deputy chief public health officer, Dr. Lamont Sweet, said vaccinating the boys will not only protect them, it will also lead to fewer women dying from cervical cancer. “Boys can be the source of the virus for their female partners,” said Sweet. “By preventing boys from carrying the virus, you in turn will help prevent girls from getting the virus which causes cervical cancer.” The new program won’t cost more than the original vaccination program, he said, because the price of the vaccine is half what it used to be. The cost of vaccinations for girls in PEI has been $280,000 a year, with about 85 per cent of girls vaccinated. Health Minister Doug Currie said PEI is the first province to offer the vaccine to boys. Nancy Bickford, public affairs for the Society of Obstetricians and Gynecologists of Canada, was pleased by the news. “The SOGC welcomes this move and in fact will be contacting other provincial and territorial ministers of health to follow PEI’s lead,” Bickford said.

You are asked to respond to media questions about this issue – should Nova Scotia follow PEI’s lead and vaccinate grade six boys?

  • Identify the values that are relevant to this discussion and select the ones that will guide your response.
  • How would you justify this response?

Some Values and Ethics Issues to Consider

  • Duty to provide care
  • Fairness
  • Community/ public health ethics
  • Priority setting
  • Resource allocation
  • Risk

58. CASE: Harm Reduction

Medical Officers of Health from British Colombia, Nova Scotia, and Saskatchewan have written to advocate for emphasizing harm reduction in the approach to cannabis and other illegal drugs (including possible legalization).

“Evidence-based drug treatment programs are cost effective, and significant benefits should be derived, at both individual and societal levels, through an increase in scale. Consistent with the recent recommendations of the House of Commons Standing Committee on Public Safety and National Security, this would include expanding access to existing evidence-based models of care such as medical and non-medical withdrawal programs, programs to manage concurrent mental health problems and addictions, ambulatory and residential treatment programs, and opioid substitution therapies. Similarly, given the substantial health (e.g. infectious disease, overdose death) and social (e.g. crime) concerns caused by heroin addiction in urban areas and the potential for heroin by prescription to reduce these harms among those for whom conventional treatments fail, the prescription of heroin could be considered for selected patients with opioid addiction that is refractory to all other treatment modalities.

Various harm reduction strategies, such as needle exchange programs and methadone maintenance therapy, have also proven effective in reducing drug-related harm and have not been associated with unintended consequences. The joint recommendations recently released by several United Nations agencies, including the World Health Organization, provide a strong scientific basis for expanding harm reduction efforts. Beyond these recommendations, the recent consensus statement from Canada’s National Specialty Society for Community Medicine, which endorses the scale-up of supervised consumption facilities, reflects the compelling national and international evidence to support the controlled expansion of these programs in urban areas with high concentrations of public drug use and related harms.”

  • What values are being prioritized in this argument?
  • What other values, if any, might be important/relevant to consider?
  • What would you suggest if you were asked to be part of a group looking to help local government develop and prioritize approaches to similar issues?

Some Values and Ethics Issues to Consider

  • Duty to provide care
  • Empathy
  • Respect for autonomy
  • Respect for dignity
  • Vulnerability
  • Community/ public health ethics
  • Community relationships
  • Living at risk
  • Patient-centred care
  • Patient safety
  • Quality of life
  • Resource allocation