91. Case: What is Best for Angela?

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 the 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?

Advertisements

79. Case: It’s the Little Things

 

A patient asks your colleague, Arya, “Where are you from?”  When Arya replies, “Winnipeg,” the patient says, “Oh, but where are you from originally?”  Arya, whose family immigrated to Canada before she was born, is clearly frustrated by this.  You were present during the exchange and were uncomfortable but didn’t know what to say at the time.

Discussion:

  • What are the ethical concerns raised by this case?
  • What might you say to Arya afterward?
  • How might your employer support Arya in addressing these sort of situations?

 

 Resources:

 

 

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?

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.

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

46. CASE: Team Work?

Judy, who had worked as a senior social worker in a mental health setting for 12 years, was hired as a team social worker in a community health care organization. Shirley, one of the team RNs, perceived Judy as hesitant and ineffective in patient care planning meetings. Other team members also found Judy to be too hesitant in making decisions, often rolling their eyes when Judy asked team members for their opinions. Despite their concerns about Judy’s hesitancy, team members also complained when Judy did not consult them before making a patient care decision. As Judy experienced these mixed messages, she became more guarded in her social work assessments.

The inter-professional team on which Judy was placed had a culture of socializing together after work. Initially, team members invited Judy to join them, but she did not have time due to the care that she was providing for her mother after work and also was uncertain about how much to socialize with her colleagues.

When the team was together after work, they discussed Judy’s behaviour, often noting that her mode of dress was out of style. Carol, the team facilitator, would occasionally join the rest of the team for a drink after work. During one of these nights, Shirley complained to Carol that Judy was not doing her job. She also mentioned that the team did not like Judy because she did not socialize with them and wouldn’t disclose information about her personal life as they all had done with each other. The nursing assistant and dietician on the team told Carol that they saw Judy as being very unfriendly. The following week, Carol spoke with Fran, the social work supervisor, stating that Judy was a problem and she wasn’t sure that Judy would work out with this team.

In her monthly supervisory meeting, Fran asked Judy how things were going with her team. As Judy’s eyes began to tear she said that she was thinking of leaving. Judy said that that she hadn’t realized how hard it would be to work with a team, and commented that the team members kept comparing her to a former team social worker who was not liked by them.

Judy told Fran that the team seemed fairly uncomfortable with mental health issues and that she was shocked when the team made derogatory comments about patients – i.e., that some were dirty and smelly or that the team couldn’t stand certain patients. And, in terms of the team, Judy wasn’t sure what to do because someone had told her that once you were on Shirley’s bad side that you were always on her bad side.

[Case modified from: P.G. Clark, C. Coot, T.J.K. Drinka, 2007, Theory and practice in interprofessional ethics: A framework for understanding ethical issues in health care teams, Journal of Interprofessional Care 21(6): 591-603.]

  • Is this a human resources issue or an ethics one?
  • How would you handle this situation?
  • Are there underlying and/or competing values that should be considered?

 

Some Values and Ethics Issues to Consider

  • Care for the vulnerable
  • Community health ethics
  • Health care provider relationships
  • Moral distress
  • Organizational culture
  • Overlapping roles and responsibilities
  • Professional competence
  • Professional boundaries
  • Respect for privacy and confidentiality
  • Respect for professional integrity
  • Staff morale

6. CASE: To Feed or Not to Feed?

You receive a call on the ethics line about a patient’s relative (next-of-kin and legal decision-maker) force-feeding her sister who is a patient on the unit (pushing food into the patient’s mouth and then holding her mouth closed, pinching her nose, etc. until she swallows). Apparently, this was not an uncommon approach to getting her to eat in the group home where she had lived very happily for 10 years prior to admission (she is 58 years old). The charge nurse feels this is abusive and dangerous behaviour, not acceptable in the hospital setting, and has told the relative this. The patient currently receiving TPN-GI does not feel she is a candidate for a peg-tube. The psychiatrist has assessed the patient as depressed and medication has been started- it takes several weeks to reach full effect, so the team is waiting to see how this will go. The option of ECT has been looked into also, but the anaesthetist feels the patient is too fragile to receive the sort of sedation needed for this procedure. The team does not feel the patient is appropriate for the acute care orthopedics unit (she is unlikely to walk again, is incontinent, immobile, dependent for ADLs with little sign that this will ever change, so not likely to get back to a group home situation in the community). The team’s concern appears to be “we need our beds for patients we can operate on and fix”, although they have not voiced this opinion explicitly. The charge nurse has learned the patient’s relative is angry with the team because she feels the patient is being discriminated against on the basis of her cognitive and physical disabilities so that PT and OT are not working hard enough with her. Staff says this is not the case- the patient is refusing to participate (originally she was told that if she walked and ate she could get back to her group home- this has not happened and the nurse feels she has given up, and is exerting the only sort of protest she can by not eating or cooperating with staff efforts any longer). Finally, there is concern about the possibility of a feeding tube down the road – should the patient get one if she continues to refuse to eat, even after the depression is adequately treated? Is this a decision the relative can make? There are also questions about the possibility of modifying the patient’s diet to be more palatable to her, realizing that this is also more dangerous given her high risk of aspiration.

  • How would you work through this case?
  • Which issues are ethics issues and which are medical decisions?
  • Who needs to be involved in making necessary decisions to move forward?

Some Values and Ethics Issues to Consider

  • Patient-family relationships
  • Respect for professional integrity
  • Moral distress of health care providers
  • Resource allocation
  • Substitute decision-makers
  • Respect for dignity
  • Staff morale
  • Quality of life
  • Duty to provide care

5. CASE: Caring for a “Difficult” Patient

A female patient in her mid-forties has been on the GI service for several months now due to severe Crohn’s Disease, which has left her with multiple draining abdominal fistuli. She has recently moved out of the province but her condition could not be treated adequately in the local hospital so she was transferred back to Nova Scotia. She has no GP. She has one sibling, a sister, who lives elsewhere in NS.

The patient does much of her own care, refusing nursing care inconsistently off and on. She is also unpredictably non-compliant in regards to medications and other treatments. Staff members describe her as extremely demanding and emotionally abusive to them, particularly when it comes to nurses and residents. She has a history of depression and anxiety, but has refused psychology support. As a result of her long hospital stay she is now VRE+ and MRSA+ so is being cared for in isolation. She has experienced 2 admissions to ICU during this admission and has had a cardiac pacemaker inserted. Interestingly, her behaviour has showed marked improvement following each of these ICU admissions, i.e., less abusive, more appropriate.

Nursing staff is feeling extremely frustrated, manipulated, and abused. They are asking for this patient to be transferred off the GI unit. The ethics consult requestor (charge nurse) feels GI is the most appropriate service for her to be on given her diagnosis and severity of her chronic illness, but also concerned for staff morale.

  • Is this an appropriate situation for an ethics referral? Why or why not?
  • If yes, what are the ethics issues?
  • Should the health care providers be asking for the transfer? Do they have a duty to provide care?
  • What ethics issues arise around the patient’s mental health and non-compliance issues, and how do they factor into this case?
  • How would you respond to this request?

Some Values and Ethics Issues to Consider

  • Duty to provide care
  • Duty to provide a safe work environment
  • Moral distress among health care providers
  • Responsibility for health
  • Respect for autonomy
  • Respect for professional integrity
  • Staff morale
  • Organizational culture
  • Responsibility for health