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?
Lisa Chun is a 12 year old recently diagnosed with Crohn’s disease. She arrived as a refugee from China five years ago with her parents and her younger brother. She has integrated well into the community and is successful in school. She often acts as an interpreter for her parents.
Lisa is prescribed corticosteroids and biologic therapies, but she states that she would prefer to pursue treatment with traditional Chinese medicine (TCM), consisting of acupuncture and herbs. Her parents indicate that they support her in this choice. Lisa’s parents have previously expressed discomfort about the diagnostic tests that Lisa underwent and Lisa and her family have missed a few appointments, which have had to be rescheduled.
The team is concerned about the long-term effects of not treating with conventional therapies, given that Lisa is very small for her age and is not displaying signs of puberty.
Some members of the team who have worked closely with Lisa feel that she has capacity to make this decision. They believe that her reasoning, based on belief that TCM treatment is better able to respond to the way that Crohn’s has manifested in her body, is appropriate. Other members of the team feel very uncomfortable with allowing her to refuse conventional therapy altogether, although they say they are willing to explore integrating TCM with conventional approaches.
Finally, certain team members are concerned that they will “lose” Lisa and her family and worry that requiring a capacity assessment for Lisa (or her parents) will irrevocably damage the relationship.
Concerns have also been raised about whether there’s an obligation to contact Child Welfare if Lisa and her parents continue to refuse conventional therapy.
The team has requested support from the ethics committee to help them work out how to approach this situation.
What will make this case clinically challenging?
What will make this case ethically challenging?
How might the ethics committee support the team in addressing these challenges?
What would change (if anything) if Lisa and her parents came from Estonia instead of China?
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?
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?
Katrina Chen is a 23 year old with a history of severe anxiety and hospitalization after particularly acute panic attacks. She has tried a variety of psychotropic medications and of these she believes that Prozac is the best at managing her symptoms. She is concerned, however, with its addictive nature and doesn’t like taking “chemicals”.
She has recently started working with a naturopathic doctor (ND) with the goal of getting off Prozac. Her naturopath has compounded a herbal remedy to treat her anxiety, explaining that it contains primarily valerian as the active ingredient, and she has also begun biofeedback treatments. Katrina feels that the valerian has been effective in reducing the severity of her symptoms and was planning on reducing her dosage of Prozac.
Katrina has been hospitalized again after a panic attack and is requesting that the hospital provide her with the valerian in addition to her Prozac prescription. She has no family in the area and a minimal social network such that she has no other way to obtain valerian. The fact that she does not have access to valerian seems to be increasing her agitation and anxiety.
The health care team is concerned about several aspects of this case. They’ve come to you with the following questions:
- Is the hospital obligated to provide alternative therapies in response to such requests by patients?
- Is the team obligated to provide valerian with Prozac given a potential risk of adverse interactions between the two compounds?
- If there seems to be very little good evidence that valerian is effective as a treatment for anxiety, should the team actively discourage Katrina from taking it?
Pierre is a representative with a company that manufactures devices for use in joint-replacement surgeries. He is often present in surgeries when his company’s products are being used. Recently, as a patient was being wheeled into the operating suite the patient asked the surgeon who Pierre was and why he was there. The nurse explained that Pierre was a with a device manufacturer and was there to provide support if needed. The patient then asked, “But isn’t that a conflict of interest?”
Is there a conflict of interest? How should the nurse respond to the patient? And what should the hospital include in a policy designed to address these types of situations?
A local business owner and philanthropist, whose parent recently died after living with Huntington disease for 15 years, approaches the hospital foundation to offer a significant donation in exchange for creating a new neurological research centre which would be named in memory of the philanthropist’s parent. The hospital has identified its area of greatest need as improving access to primary care for patients in the remote communities it serves, but the donor is not interested in contributing to that mandate.
Is the hospital in a conflict of interest? What is the nature of the potential conflict of interest?