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?

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?

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?

37. CASE: A Question of Resources

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 Dr. Jones and Dr. 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.

  • What do you think is important to Joyce (in terms of her personal values)?
  • On what basis could Joyce claim a right to continue receiving blood transfusions?
  • What ethics principles and values are at play in these circumstances?
  • What weight in the decision-making should be given to the clinical judgments of Dr. Jones and Dr. Miller?
  • Should Cathy (as an engaged family member) participate and have some authority in the decision-making? Would this change if Joyce loses capacity and Cathy becomes her sister’s substitute decision-maker?
  • 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 District Health Authority and/or the provincial Department of Health & Wellness have a role in such end-of-life decision-making?
  • Under what circumstances would it be ethical to deny Joyce’s request for further blood transfusions?

 

Some Values and Ethics Issues to Consider

  • Resource allocation
  • Distributive justice
  • Substitute decision-making
  • Patient-centered care
  • Respect for patient autonomy
  • Respect for professional integrity
  • Compliance with organizational policy
  • Quality of life
  • End of life decision-making

29. CASE: Complicated Caring

Mr. Sundown is a 78-year old African Nova Scotian who is a patient in an internal medicine clinical unit at the Halifax Infirmary. He has a variety of serious medical conditions including diabetes, coronary artery disease, and advanced COPD. He is experiencing progressive respiratory failure on the basis of a difficult-to-treat pneumonia. Mr. Sundown has Alzheimer’s disease and, when out of hospital, lives at home in Dartmouth, where he is totally dependent on his family and visiting VON nurses.

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

Mrs. Sundown and her children make regular visits to the hospital. Mrs. Sundown is a physically healthy person. She is shy and tends to defer in her decision-making to her eldest son, Peter, who has power-of-attorney for both his parents. He lives in Toronto and usually visits home twice yearly. There are two other siblings, Don and Paulette, who live in Halifax.

Mrs. Sundown and Peter are members of a fundamentalist faith. Mr. Sundown is a life-long agnostic, while Don and Paulette attend protestant churches. They all get along pretty well as long as no one brings up religion.

At a health care team conference, there is discussion of the possibility of withholding further potential treatment (including mechanical ventilation) for Mr. Patterson whose health condition is rapidly deteriorating. The attending physician and most other members of the treatment team believe that this is in Mr. Sundown’s best interests, given his apparent low quality of life and what they perceive to be his potential for prolonged suffering.

On a review of Mr. Sundown’s health record, the charge nurse notices that Peter Sundown is listed as the next-of-kin on the admission notes, and that an advance directive has not been made. Family members report to the attending medical resident that Mr. Sundown has not clearly indicated his wishes/ preferences for medical care and treatment at the end-of-life.

The attending physician is aware that the relevant intensive care unit is full and that there are five other very ill patients waiting for urgent admission. He calls for an ethics consult.

  • What issues should be discussed during this meeting?
  • Who should be present at this meeting?
  • What weight should resource allocation have in this case?

Some Values and Ethics Issues to Consider

  • Advance care planning and personal directives
  • Substitute decision-making
  • Spirituality and religious beliefs
  • Resource allocation
  • Respect for patient autonomy
  • Respect for human dignity
  • Patient-family relationships
  • Quality of life
  • Capacity
  • End-of-life decision-making

28. CASE: Mind the Gap!

Mrs. Hardriver is admitted through ER to a general surgery unit for emergency surgical management of an acute small bowel obstruction secondary to her advanced colorectal cancer. After surgery, Palliative Care is consulted and they agree to admit Mrs. Hardriver to their service. As there is no palliative care bed available at the time of referral, the surgical unit agrees to keep her until one is freed up. Three days post-op, Mrs. Hardriver develops significant delirium and lapses into a semi-conscious state, which is thought to be secondary to her known, multiple brain metastases.

Mr. Hardriver, his wife’s legitimate substitute decision-maker, informs members of her attending medical team that she has been ‘a fighter’ all her life and that, at the time of admission, she told him that she wished to have everything possible done to save her life, including admission to an intensive care unit after surgery. He produces a valid, up-to-date advance directive, which contains instructions that are consistent with Mr. Hardriver’s account of his wife’s previously expressed wishes. A health record review reveals that Mrs. Hardriver had always rejected the option of ‘Do Not Resuscitate’ on previous hospital admissions for management of various complications of her colorectal cancer.

Despite Mrs. Hardriver’s expressed wishes, Mr. Hardriver believes that a palliative care (only) approach is in his wife’s best interests at this time. The consensus view among the medical team and other attending health care providers is supportive of his position. However, Mr. and Mrs. Hardriver’s daughter Sara believes her mother’s expressed wishes should be respected and calls the ethics committee.

  • Given this (near) consensus among the decision-makers, is it reasonable to seek an ethics consultation? Why or why not?
  • When should a substitute decision-maker be able to override a personal directive?
  • What is the ethics committee’s role in assisting Sara in this difficult situation?

Some Values and Ethics Issues to Consider

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

27. CASE: Withdrawal of Life-Sustaining Treatment

Mr. Windown, age 82, is admitted to a cardiology clinical unit with unstable angina. In addition to his coronary artery disease, Mr. Windown suffers from disabling generalized osteoarthritis, chronic and progressive obstructive lung disease, and diabetes with associated compromise of his vision and kidney function.

The coronary angiography reveals significant blockages of Mr. Windown’s coronary arteries. His attending cardiologist recommends that he undergo urgent four-vessel cardiac bypass grafting (to shunt blood around the blockages). The consultant cardiovascular surgeon, Dr. Paterna, gets Mr. Windown to sign a consent form for the procedure and mentions that it is anticipated that Mr. Windown will need to spend two days in the Cardiovascular ICU after the surgery.

In the past year, Mr. Windown’s health status has deteriorated to the extent that he can no longer perform any physical chores on his hobby farm. Prior to developing unstable angina, he was limited to walking around the first floor of his farmhouse and watching TV. After giving considerable thought to his future health care and treatment, Mr. Windown named his daughter, Elle, as his delegate in a personal directive, which does not provide any specific instructions. In a general, frank discussion about his health, Mr. Windown clearly expressed to his wife and Elle that he did not wish to be maintained on life support for a prolonged period of time.

Unfortunately, Mr. Windown experiences a significant complication from his cardiac bypass surgery – he suffers an intra-operative stroke, which renders him incapable of making health care decisions on his own.

Two and a half weeks after the surgery, Elle speaks to Dr. Paterna (who is now her father’s attending ICU physician) and requests that her father’s life sustaining treatment (including mechanical ventilation and renal dialysis) be withdrawn. Dr. Paterna gets annoyed with Elle, describes Mr. Windown’s health status in highly technical terms, and emphatically informs her that, in his opinion, her father has a reasonable chance of recovery to a functional status similar to the one he has experienced for the past year. Dr. Paterna tells Elle that this recovery will require another two to four weeks in the ICU and that he is uncomfortable with withdrawing Mr. Windown’s life sustaining treatment at this time.

When Elle insists that her father’s prior, verbally-expressed wishes be respected, Dr. Paterna manages to put her off for a few days by not responding to her request for a family meeting. He complains bitterly in the staff room that Mr. Windown’s family is being “difficult”. With the encouragement of the ICU’s assertive social worker, Dr. Paterna reluctantly agrees to consult ethics.

  • How would you proceed with this consult?
  • Is this a communication and/or professional practice issue or an ethics one?
  • Identify any underlying ethical tensions in this situation?
  • Is Dr. Paterna right to push back on Elle’s request?



Some Values and Ethics Issues to Consider

  • Advance care planning and personal directives
  • Substitute decision-making
  • Respect for professional integrity
  • Respect for patient autonomy
  • Respect for human dignity
  • Patient-provider relationships
  • Patient-family relationships
  • Quality of life
  • Consent

25. CASE: A Difference of Opinion?

Mary is a 90-year old woman who has been in hospital several weeks. She has a COPD exacerbation, increasing difficulty swallowing, and pneumonia. She has said repeatedly she is tired of being in hospital and tired of fighting to breathe. She doesn’t want a feeding tube or her IV but wants to be allowed to die comfortably.

Mary’s daughters who have been regular, frequent visitors, say she has always been a fighter and would never want to give up. They believe she is just discouraged and are requesting everything be done to keep her alive including a feeding tube, IV hydration, and mechanical ventilation if it becomes necessary.

The resident in charge of Mary’s care calls the ethics request line.

  • What are the ethics issues in this situation?
  • What underlying values are at stake?
  • Should Mary or her daughter’s have decision-making authority?
  • How would you respond to this call for ethics support?
  • Who should be involved in the discussion?

 

Some Values and Ethics Issues to Consider

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

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