You are caring for a patient following a severe stroke. The attending physician has been very clear with the family that it is unlikely that the patient will survive and that, if he does, it will be with very significant impairments. Still, the family takes any movement or facial change as an indication that he is improving. They are praying for his full recovery and today, at the end of your shift, the eldest child asks you when you think her father will be ready to go home. How will you respond to the question?
Your family has strong faith convictions and a firm belief that “where there is breath, there is hope”. Your father had a stroke unexpectedly and you found him slumped over when you came home from class. You feel guilty because you stopped on the way home to get coffee with a friend. The doctor said that your father’s “prognosis is poor”, but you’ve heard lots of stories about doctors being wrong. You also feel strongly that if you believe that your father will recover this will help to bring it about and that the converse is true, that if you allow yourself to think or talk about your father’s death it could cause it to happen. So, you ask the doctor when they think your father will be able to come home. How would you respond if the physician says, “I don’t think your father will be able to go home…”?
- How did your response to the case shift when you read about it from a different perspective?
- What do you see as the most important values for each person involved in the conversation?
- What might be some of the undercurrents that influence the direction the conversation takes?
- What makes this a difficult conversation for each participant?
- Who else might be involved in having subsequent conversations with the family about care decisions?
Barley, S. 2010. Having the difficult conversations about the end of life. The BMJ 2010; 341, published 16 September 2016 https://www.bmj.com/content/341/bmj.c4862
Lippe, M. 2018. Drawing the line between hope and false expectations. Blogpost, Reflections on Nursing Leadership. Published online 09/19/2018 https://www.reflectionsonnursingleadership.org/features/more-features/Drawing-the-line-between-hope-and-false-expectations
NSHA Library Services: Conversations about serious illness: https://library.nshealth.ca/SeriousIllness/GOC
Welsh, A. 2016. At end of life, doctors and families often differ in expectations. CBC news, published May 17, 2016. https://www.cbsnews.com/news/better-doctor-family-communication-needed-at-end-of-life-study/
Woelk, C.J. 2008. Management of Hope. Can Fam Physician; 2008 Sep. 54(9): 1243-1245 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2553443/
You are a nurse practitioner working in a family practice. A first-time parent brings their child in for a 2-month checkup. The parent seems nervous when vaccines are mentioned as a routine part of the appointment. You ask the parent specifically about vaccination, and the parent is hesitant. They say that they “can’t get idea of something bad happening to the baby because of the vaccination out of [their] head”. You have a strong commitment to vaccination as a part of good health care practice and to adhering to the standard public health vaccination schedule. How do you proceed with this conversation?
You are a first-time parent taking your 2-month-old baby into your doctor’s office for a checkup. You are told when you arrive that the nurse practitioner, whom you’ve met before and liked, will be seeing you today. You don’t have any concerns about your baby’s growth and development and are excited to see how much weight they’ve gained since their last appointment. You are surprised when the nurse mentions vaccination; you had thought that you didn’t have to worry about that until the next appointment. Since your baby was born you’ve been very aware of all the ways that they could be harmed, and you’ve been intent on avoiding all the risks you can; you have even stopped driving with your baby in the car unless absolutely necessary. You know that the risks associated with vaccination are low but wonder if they could nonetheless be reduced or avoided somehow. You experience the nurse’s questions about vaccination as a type of threat and feel defensive, although you also recognize that’s not the nurse’s intent. How will you respond to the nurse practitioner?
- How did your response to the case shift when you read about it from a different perspective?
- What do you see as the most important values for each person involved in the conversation?
- What are some of the other values and principles that are relevant when considering how to proceed in cases like this?
- Which factors contribute to making this a difficult conversation?
- What would the best possible outcome in this case look or sound like?
Halperin, S.A. 2000. How to Manage Parents Unsure About Immunization. CME. January 2000; 62-75. https://www.ucalgary.ca/paed/files/paed/4-halperin-article3.pdf
Zimlich, R. 2018. 4 Tools to Frame Conversations about Vacccines. Contemporary Pediatrics, November 13, 2018. https://www.contemporarypediatrics.com/pediatric-immunization/4-tools-frame-conversations-about-vaccination
Centers for Disease Control and Prevention. Talking with Parents about Vaccines for Infants. Provider Resources for Vaccine Conversations with Parents. [Accessed March 12, 2019] https://www.cdc.gov/vaccines/hcp/conversations/talking-with-parents.html
Paterson, P., Meurice, F., Stanberry, L.R., Glismann, S., Rosenthal, S.L., Larson, H.J. 2016. Vaccine hesitancy and healthcare providers. Vaccine, Vol 34 (52), 20 December 2016, p. 6700-6706
TEDx Talks. Tara Haelle. Why Parents Fear Vaccines. Published on May 2nd 2016. TEDxOslo. https://www.youtube.com/watch?v=ggtkzkoI3eM
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.
- 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?
Mr. Rattan has been a resident at Ocean Wind, a retirement community offering a range of options for accommodation, for the last ten years since his partner died. Currently he has a studio apartment in the assisted living wing, which provides assistance with ADLs.
Mr. Rattan has been diagnosed with dementia. In the last few months his younger daughter, who typically visits on her way home from work, has become concerned that his current living situation doesn’t meet his needs and wants him to move into the locked dementia unit in a different wing of the building. She has started to make arrangements for Mr. Rattan to move.
When his daughter talks with him about moving, Mr. Rattan seems amenable to this option. But twice when staff have come to discuss moving with him he refuses, saying that he’s comfortable where he is and that he doesn’t want to spend the extra money.
Mr. Rattan’s elder daughter and son have both called Ocean Wind to reinforce that Mr. Rattan has told them he doesn’t want to move and that they want his wishes to be respected. Mr. Rattan does not have an personal directive in place.
Staff have expressed some concerns about Mr. Rattan, indicating that he seems frequently to be confused and disoriented at the end of the day. They are also considering requesting a capacity assessment, but there is disagreement about whether that is an appropriate next step.
The manager at Ocean Wind has contacted you as the chair of the ethics committee looking for support with this case.
What will make this case clinically challenging?
What will make this case ethically challenging?
How might the ethics committee support Ocean Wind in addressing these challenges?
What would change (if anything) if Mr. Rattan had a personal directive identifying his son as the substitute decision maker?
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?”
Franklin Pictou is a 68 year old with limited mobility receiving post-surgical follow up care in the home. He wishes to remain in his dwelling, which is not especially clean and poses hazards to him (uneven stairs, loose carpets, wood stove for heat, and mould) and to health care providers (bed bugs).
He chooses to stay at home because, as he says, “he likes it here” and he cannot find an alternative living situation that he can afford in which his large dog would be welcome.
Which factor do you think is most important in Franklin’s choice of where to live?
- Cost of alternatives
- Familiarity of home
- Comfort of home
- Having his dog with him
- Feeling in control of the situation
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?
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.
Questions for Collective Consideration
- What do you think is important to Joyce (in terms of her personal values)? What do you suspect about her personality structure?
- 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?
- What weight in the decision making should be given to the clinical judgments of Drs. Jones and Miller?
- 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?
- Is ‘bedside rationing’ of limited health resources an appropriate form of health resource allocation?
- 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?
- Under what circumstances, if any, would it be ethical to deny Joyce’s request for further blood transfusions?
Case substantially modified from “Obesity in Kids: When Appeals to Vanity Don’t Work,” Virtual Mentor 8(10): 377-380, October 2006 – see virtualmentor.ama-assn.org
Nicholas has the option of spending the summer in an intensive weight reduction program at a health facility in Ontario. This highly regarded program accepts only 10 adolescents each summer, based on medical problems related to obesity. Nicholas has cardiomegaly, hypertension and pre-diabetes. At 14, Nicholas is 5 feet 7 inches tall and currently weighs 285 pounds.
The health team caring for Nicholas is quite concerned about him and believes that this program would be a great option. While traveling to Ontario and being separated from his family might be hard, the weight reduction program would likely have a very positive benefit on Nicholas’s health.
Indeed, one of the health team members, Matthew, feels strongly about this as he recalls what it was like to be the “fat kid” in class, putting up with the teasing and ridicule. After a family meeting, Matthew is almost incredulous that Nicholas isn’t sure about the program and that his parents aren’t really pushing him to go. He’s overheard saying to Nicholas’s mother on the way out of the meeting that, “I can’t believe that you aren’t sending him to the program. It’s his only chance! Any good parent would send their child.”
Amy, the team social worker, has been meeting with Nicholas and his parents and she shares a different perspective. Amy has noted that Nicholas isn’t really bothered by his weight in the way some other people are. He has his first girlfriend, is pretty popular, and doesn’t get teased very often by his peers (about his weight, at least). His parents are also ok with his body size. While they appreciate his health problems, they are really concerned that an (over)emphasis on his weight might hurt his self-esteem and cause him to lose focus on who he is as a whole person.
Further discussion among team members makes it clear that there is deep disagreement about how to proceed in this case. Should they put more pressure on Nicholas and/or his parents to agree to the camp? Is this over-stepping their role as health care providers? All agree that an ethics perspective would likely be helpful and give the clinical ethics consultation line a call.
Jessie Rockford is an 8-year-old with a history of developmental delay, significant cognitive deficits, and symptoms of cerebral palsy. She is her parents’ only child and they are very loving, attentive, and concerned–they never miss a medical appointment and have carefully followed the care plan drawn up for their daughter.
However, with the passing of time they have grown increasingly concerned about her muscle spasms and contractions that seem to be causing her significant discomfort. They have consulted a local homeopath as well as a massage therapist who have both become involved with Jessie’s ongoing care.
At a regular clinic visit her parents tell the clinician about these new developments and add that they believe the treatments are helping. When the sessions are explored with Jessie, she shows no concern and seems quite content.
The health care team has some questions about this development and has called you to find out how they should respond to Jessie’s parents. Should they be supportive or discouraging of the parents’ decision?