97. Case: Surgery, Supported Decision Making and Capacity

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.


Questions:

  • 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?
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94. Case: Mr. Rattan Wants to Stay

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.


 

Questions:

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?

93. Case: End of Life with Dementia

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?”

44. CASE: Whose Business Is It?

Brent Wathorn, 78, has been living at Halfway Lake Manor for about 6 years. His main complaint has been that he is lonely and has had difficulty connecting with the other residents. This has been a source of distress for staff at times, as they would like him to feel more ‘at home.’

Norma Carkner, 75, moved to the Manor about a month ago. She has limited cognitive abilities as the result of a stroke, but is still able to express herself reasonably well and make some choices if given enough time.

Staff members have noticed that Brent and Norma have been spending much time together and have found them kissing on occasion. While there is no evidence of a sexual relationship beyond this, some of the staff is quite concerned about the possibility.

Given his loneliness, they wonder if Brent may be putting pressure on Norma. Other staff point out how happy both Brent and Norma seem together. Much of the discussion has focused on whether and to what extent they should intervene or say something to family members.

  • What values/assumptions might be at play here for staff members?
  • What ethics concerns are you considering in this scenario?
  • Should the staff discourage this relationship?
  • Should the staff notify Brent and/or Norma’s family about the relationship?


Some Values and Ethics Issues to Consider

  • Honesty, trust and truth-telling
  • Compliance with policies and procedures
  • Respect for privacy and confidentiality
  • Respect for patient autonomy
  • Respect for dignity
  • Quality of life

38. CASE: Managing Human Resources

The Bluenose Villa is a long-term care facility licensed under the Nova Scotia Homes for Special Care Act. It is owned and operated by a rural, non-profit health organization. At a recent meeting of the senior management team and Board of Directors to establish next year’s annual budget, the CEO, Ms. Seahead, shares her concerns about the long term, sustainability of the Villa to recruit and retain qualified, motivated employees. She cites the relevant shifting demographics including an urbanization trend, an aging population and workforce, the upcoming retirement of large cohorts of ‘baby boomer’ workers, and the likelihood of intensified recruitment of personal care workers by acute care hospitals that are able to offer higher salaries.

The Villa devotes as many of its resources as possible to the delivery of a broad range of programs and services for its residents including comprehensive recreational/ social programs and the offering of high quality and varied food choices. The non-profit organization needs to invest on a regular basis in the maintenance and improvement of its aging physical facilities. While the CEO believes that the Villa has been fair in the terms and conditions of employment of its staff, she is worried that the Villa is falling behind other health employers in the District in its ability to attract and retain good staff.

Most of the Villa’s residential placements are government subsidized and the CEO has just been informed that the per diem care rate paid by the Department of Health will remain unchanged for the next year.

The decision-making group, consisting of the senior management team and Board, decide to use the health priority-setting decision-making framework developed by the Nova Scotia Health Ethics Network to assist them in their annual budgeting process.

  • Using A Decision-Making Framework for Health Priority Setting found on NSHEN’s website (http://www.nshen.ca/docs/nshen_healthpriority.pdf) to work through this case, what key budget-related concerns do you identify?
  • What are your fiscal priorities?
  • How do your priorities relate to your employee-retention plan?
  • How will you justify the priorities you determine after using the decision-making framework?

24. CASE: Changing Care and Care-Giving

Kevin Henderson is an 83-year old man who is hospitalized in an internal medicine clinical unit at the local hospital. Kevin has a variety of serious medical conditions including severe Alzheimer’s disease, diabetes, coronary artery disease and advanced chronic obstructive lung disease. He is slowly recovering from a difficult-to-treat pneumonia, which required treatment with intravenous antibiotics.

During this admission, the clinical unit nurses and attending physician are having a difficult time communicating with Kevin. On some occasions, he appears to recognize his wife and children and speaks a few, seemingly appropriate, words to them.

Family members make regular visits to the hospital. Mr. Henderson’s wife, Nancy, has osteoarthritis that has been increasingly disabling of late. She is somewhat shy and tends to defer her decision-making to her eldest son, Peter. He lives in Toronto and usually visits home twice yearly. He has recently flown to Halifax to see his father and provide psychological support to his mother. Peter has power of attorney for his father’s financial matters.

There are two other children, Sandra and Paulette, who live in Dartmouth. They are estranged from their brother due to unresolved, significant conflict that arose from the sale of the family cottage two years ago.

When out of hospital, Kevin lives with Nancy at home in a rural area, where he is totally dependent on his family and visiting VON nurses. Nancy has been finding it increasingly difficult to care for her husband at home. She arranges to meet with her children in the clinical unit’s family room to discuss alternate living arrangements for Kevin. When they meet, Nancy states that she is not willing to make a decision about placing Kevin in a continuing care home on her own. She then looks to Peter to begin the discussion.

An advance/personal directive has not been made. Kevin, who was in denial during the early stages of his dementia, avoided talking to his family about his wishes for his care when his health condition got worse. Sandra recalls that while her father was well, he had once commented to her that he did not want to end up in a nursing home at the end of his life.

  • What ethics concerns should the family be considering as they seek a way forward?
  • Who should be making decisions about Kevin’s care?
  • How would you help to facilitate this discussion?
  • Should Nancy’s health and well-being be considered equally as Kevin’s?


Some Values and Ethics Issues to Consider

  • Capacity
  • Substitute decision-making
  • Patient-family relationships
  • Respect for patient autonomy
  • Advance care planning and personal directives
  • End-of-life decision-making

21. CASE: Balancing Concerns

“Where’s the door to my bathroom? Can’t a man get some privacy?”

“Uh oh, that’s Elias again. We’d better make sure he’s alright.”

“How many times are we going to have to go through this with him? Maybe we should just put the bathroom door on again.”

“The only problem is that on his ‘bad’ days, he often gets confused and trapped in the bathroom. Don’t you remember how long it took us to calm him down after that happened about five weeks ago? He was so worked up! Elias and his family agreed to taking the door off at the meeting about this a couple of weeks ago. It seemed the safer way to go. The problem is that Elias can’t always remember that this is something he said he wanted.”

“Well, that must have been on one of his ‘good’ days. We don’t seem to be having so many of them now. I’m finding it hard to have this conversation with him every shift!”

  • What are the ethics issues here?
  • Are there other options that could be considered in this case?
  • How would you suggest the health care team work through this issue?
  • Should Elias’ safety take precedence over his dignity?

Some Values and Ethics Issues to Consider

  • Capacity
  • Respect for human dignity
  • Quality of life
  • Living at risk
  • Patient safety
  • Beneficence and non-maleficence
  • Substitute decision-making
  • Organizational policy

17. CASE: Too Much to Expect?

92-year old Ellie MacPherson has recently moved to a long-term care facility. She had found that the increasing difficulty she was experiencing due to arthritis with getting dressed, making her meals and getting out of the house meant that she could no longer live on her own.

Ellie brought a number of her favourite clothes to the long-term care facility. While she was initially asked what she would like to wear, this practice has changed. Now the person assisting Ellie with getting dressed chooses the clothes for her. Ellie expressed her frustration with this situation saying, “I’m 92 years old! Don’t you think I can choose what to wear? I’m not a baby!”

The response she heard back was that it took too long for Ellie to choose her clothes and that she would have to make do: “Other residents in the facility need assistance with getting dressed as well and I can’t spend all my time on you.” Ellie’s family has requested an ethics consultation to address the issue.

  • Is Ellie’s complaint unreasonable?
  • Is this an ethics issue?
  • How would your ethics committee handle this inquiry?

 

Some Values and Ethics Issues to Consider

  • Resource allocation
  • Patient-centered care
  • Respect for human dignity
  • Patient-provider relationships
  • Quality of life
  • Respect for patient autonomy

14. CASE: I Want to Go Home!

A widower (age 88) lives alone, but has family living nearby. Recently he had a stroke and regained consciousness after being admitted to hospital. He was deemed to have cognitive capacity.

His adult children approached the physician in charge of his case along with the unit’s Nurse Manager and requested that the patient be placed in a nursing home. The patient was clear and firm in his desire to return to his own home.

The team has requested a clinical ethics consult.

  • What are the main ethics issues at stake here?
  • What steps would you take to help the patient, family and health care team come to a decision?
  • How should risk and quality of life be balanced/reconciled in this situation?
  • Who else should be a part of this discussion?


Some Values and Ethics Issues to Consider

  • Capacity
  • Patient-family relationships
  • Substitute decision-making
  • Living at risk
  • Patient-centered care
  • Empathy
  • Patient safety
  • Community health ethics
  • Respect for patient autonomy
  • Respect for individual liberty
  • Respect for human dignity
  • Quality of life