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?

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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?”

85. Case: Adam’s Story

Adam Snowdon, a 16 year-old Sydney boy, was diagnosed with ALS (Amyotrophic Lateral Sclerosis) 18 months ago.  The disease has progressed rapidly over the past three months and over this period Adam has quickly begun losing the ability to use his right arm to the point now where it is no longer effectively functional.  He is also beginning to have difficulty standing and walking and is showing early signs of respiratory, swallowing and speech problems.  His doctors speculate that Adam will die within a year and that in the months prior to that he will likely become “locked in” and unable to communicate at all.

Adam has always been a rambunctious boy.  He has had numerous behavioral issues throughout his childhood, proving to be quite a handful for his parents.  He has run away from home several times, has been suspended various times and expelled from two schools. Adam has also been detained by the police on four occasions for possession of alcohol and marijuana.

Adam is currently living at home in Sydney with his mother Nancy Snowdon and older brother David who just turned 17.  Nancy works part time as a school librarian.  She has full-time custody of her two sons.  Nancy has been suffering from clinical depression for several months now.  She has been under emotional strain since Adam became ill.  She is currently taking antidepressant medication and is receiving counseling from a chartered psychologist.  Through this treatment appears to be helping Nancy, she is still struggling to cope.  On a few occasions she has missed appointments with Adam’s doctor, simply feeling unable to face the situation on her “bad days”.  On those occasions Adam missed his appointments altogether as he shows no initiative in attending his medical appointments on his own.

Adam’s health care providers have not been able to establish a trusting relationship with him.  They find it generally difficult to engage him in conversation, and he is especially uncomfortable discussing the ALS.  He refuses to discuss the details of how his disease will progress or his preferences regarding options such as ventilators etc.  He has, however, stated emphatically that he has no intention of allowing them to “put him in the hospital do die”.

Adam’s father, Ted Snowdon, is an engineer in Alberta.  He and Nancy divorced relatively amicably when Adam and David were nine and ten respectively.  Mr. Snowdon has not played much of a role in the lives of both of his sons after the divorce but he visits every summer and they all go camping.  He has remarried to Clarice Snowdon who has shown little interest in the boys.  Since Adam’s diagnosis, Mr. Snowdon has been flying out to Sydney regularly to be involved with decisions around organizing care for Adam. Mr. Snowdon feels strongly that decisions about Adam’s future care need to be made immediately.

Dr. Kerrigan is Adam’s family physician.  She is concerned that Adam’s condition is getting worse very rapidly and is anxious about the decisions that will have to be made about Adam’s care.  In particular, Dr. Kerrigan is worried about the relationships within the family.  She knows that Mr. Snowdon feels strongly that his son should be hospitalized and eventually ventilated.  He has stated that Adam is “too young” to know what he wants and is worried that Nancy is not able to handle keeping Adam at home, even with home care support.  Dr. Kerrigan is concerned that Mr. Snowdon will dominate the decision-making process at the critical time and that Adam’s and his mother’s wishes may be overridden or altogether neglected.  Beyond her concerns about the family dynamics, she is uncertain as to Adam’s decision-making capacity – and Mrs. Snowdon’s for that matter – and is also unclear on the more basic question of who ought to be making decisions about Adam’s care.

Since Adam became ill he has been seeing a neurologist at the local hospital, Dr. Watson, and Dr. Kerrigan are in touch frequently regarding Adam’s care and have discussed Dr. Kerrigan’s concerns around the family dynamics and the decision making that will need to occur in providing end of life care for Adam.  Dr. Watson has requested a consult from the hospital ethics committee.  Mr. Snowdon and his wife have flown in from Calgary just for this meeting.  Adam was asked to participate in the meeting but he flatly refused, saying he wanted to spend time with some of his friends instead.

Participants’ Roles:

Ethics consultant #1 (facilitator)

Ethics consultant #2 (ethics facilitator)

Ethics consultant #3 (recorder)


Nancy Snowdon (Adam’s mother):  Very concerned about her son’s welfare.  Feeling overwhelmed, isn’t sure what to do.

Mr. Ted Snowdon (Adam’s father):  Skeptical of Adam’s decision making capacity and can’t understand why Adam is acting the way he is.

David Snowdon (Adam’s 17 year old brother):  David is scared, angry with both parents, worried about Adam, and worried about his own life. Most of all, he wants peace for Adam.

Dr. Watson (neurologist):  wary of the complex relational issues at stake, as well as the challenges of making decisions for young ALS patients like Adam.  Wants to make decisions as soon as possible before Adam is no longer able to express his own views.  Feels in over his/her head, wants the committee to get this sorted out as much as possible.  Dr. Watson has been developing an interest in bioethics and is considering becoming a member of the ethics committee.

Dr. Kerrigan (family physician):  Concerned about the toll this is taking on Nancy, Adam and David.  Worried that Mr. Snowdon is driving discussions around care.

Jamie Lee (patient services coordinator):  Has been taking a bioethics course and is eager to apply her/his newly developed skills.

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

23. CASE: Reaching the Limits

Mr. Stanley, a divorced 55-year old journalist with a history of epilepsy, was admitted to the medical ICU after an unwitnessed (presumably prolonged) episode of status epilepticus at home. Investigations, including an MRI study, revealed that he had sustained watershed cortical infarcts and a diagnosis of severe anoxic encephalopathy was made.

Mr. Stanley did not regain consciousness during the first three weeks of his ICU admission. Although formal criteria for brain death were not met, the attending critical care specialist, Dr. Hamilton, was of the opinion that Mr. Stanley would not regain sufficient functional status to allow him to meaningfully communicate with others and to live outside of an extended care facility. A consultant neurologist agreed with Dr. Hamilton’s opinion. The unit’s transplant coordinator was aware of Mr. Stanley’s clinical circumstances and had a brief hallway chat with Dr. Hamilton.

After a long discussion with Dr. Hamilton, two of Mr. Stanley’s three adult sons, both of whom were living in the area, made the difficult decision to withdraw their father’s life support. The youngest brother, who was angry with his father about his parents’ divorce, was living in the UK and had not been in contact with Mr. Stanley during the past two years. Speaking to his brothers over the telephone, he strongly objected to the withdrawal of his father’s life-sustaining treatment. He informed them that he had heard of miraculous recoveries in similar circumstances.

A telephone call to the provincial organ donation registry revealed that Mr. Stanley had not indicated “yes” on his MSI card donor certificate. However, one of his Halifax-based sons recalled a brief discussion in which his father had stated that he wished to donate his organs after death.

The transplant coordinator had a prolonged, sit-down discussion with the two locally-based sons. They decided to provide consent for DCD – organ donation after cardiac death. In the day and a half prior to the scheduled discontinuation of mechanical ventilation, several tests were performed to assess the viability of Mr. Stanley’s organs. In addition, two intravenous medications were administered to ensure the continued viability of his organs until the organ donation/ transplantation procedure could take place.

Mr. Stanley’s youngest son arrived on the scene and witnessed the performance of these tests and interventions. He asked Dr. Hamilton to explain why these were being performed and requested a detailed description of the DCD process. He became very upset and left the unit to seek the advice of a lawyer.

The next morning, Mr. Stanley was removed from life support in the ICU with the two locally-based sons present. His heart stopped thirty-five minutes later. Five minutes after this, he was quickly transferred to a nearby surgical unit where his organs were surgically procured for transplantation to a number of waiting hospital patients in end-organ failure.

  • How would you feel about these circumstances as a health care provider assigned to Mr. Stanley’s care?
  • What are some of the relevant ethics issues?
  • Does the practice of DCD challenge our usual understandings of death and/or informed consent/ choice?
  • Do you think the right decision was made?

 

Some Values and Ethics Issues to Consider

  • Informed consent
  • Personal directives and advance care planning
  • Patient-family relationships
  • Respect for patient autonomy
  • Substitute decision-making
  • Moral distress among health care providers
  • End-of-life decision-making

20. CASE: To Treat or Not to Treat

Stan Miller, a retired widower, sustains severe burns covering 80% of his body surface in a house fire secondary to a propane gas leak. He is initially assessed in the ED of the local hospital where he is sedated and intubated without any pre-resuscitation discussion about the seriousness of his thermal injuries and his care preferences. He is transferred by air ambulance to the ED of the provincial tertiary care centre where he is assessed by an on-call, senior plastic surgery resident. The brief transfer documentation indicates that Mr. Miller has a variety of pre-morbid health conditions including type II diabetes, essential hypertension, coronary artery disease and moderate COPD. He is admitted to the Burn Unit from the ED.

Mr. Miller has three adult children, two of whom arrive on the scene shortly after their father’s admission to the Burn Unit. The children, David and Sarah, describe their father as a “go-getter” who approaches his retired life with enthusiasm despite his chronic health problems. They mention that he has been living with a partner, Cathy, who was away on a visit to Ontario to see her family when the fire occurred.

Mr. Miller’s three children had an informal discussion with their father a couple of years ago at Christmas time about what he would wish to have done if he ended up in an ICU Unit and could not make treatment decisions on his own. Mr. Miller essentially told them that his care preference would be to fight to stay alive.

A family meeting held on the Burn Unit is held in order to decide the course of treatment. It is attended by Sarah, David, the attending plastic surgeon on rotation, two residents and a nurse who provides direct care to Mr. Miller.

  • What issues would be important to discuss during this meeting?

Now Consider:

What if the above scenario is the same except that Sarah’s 17 -year old son Mike (Mr. Miller’s grandson) was staying over for the weekend when the fire happened and he too sustains severe burns- in his case, covering 90% of his body. He arrives with his grandfather by air ambulance after being sedated and intubated in the local hospital ED. In discussion with members of the health care team, Sarah comments that her son recently received an athletic scholarship to attend Acadia University next fall. She reports that he loves the outdoors and has always been in excellent health. The same plastic surgeon and residents and a nurse who directly attends Mike participate in a family meeting with Sarah and her husband in order to decide the course of treatment.

  • What issues would be important to discuss during this meeting?
  • Does the age and relative health of the patient in this scenario change the issues at hand compared to the first scenario?

Some Values and Ethics Issues to Consider

  • Substitute decision-making
  • Advance care planning
  • Pediatric ethics
  • Resource allocation
  • Patient-family relationships
  • Quality of life