74. Case: Compulsive Hoarding – Mary

Mary is a 72 year old woman who has been a compulsive hoarder for the last 10 years.  She can only move from room to room through pathways. She would like to move closer to her daughter and grandchildren, but she feels overwhelmed by the amount of stuff she has in her house. Despite the family’s efforts to help, her previous attempts to clean out her home have been unsuccessful. Mary has outpatient orthopedic surgery scheduled, and follow-up care will be provided in her home.  This is causing Mary anxiety and she is considering cancelling the surgery due to the shame she feels about the state of her home.*

*(Case adapted from Cermele, JA et al. (2001). “Intervention in Compulsive Hoarding: A Case Study”. Behavior Modification 25.2: 214-232.)

What are some of the important details in this case that would help you determine how to approach Mary and discuss her concerns?

What are the key ethical concerns if Mary decides to cancel the surgery?

What are the ethical concerns about follow-up care in this case?

What options do you have to address the ethical concerns about follow-up care?

_______________________________________________ 

Some values and ethics issues to consider:

Respect for Autonomy

Quality of life

Quality of care

Boundary crossing

Trust relationship

 

Resources

Gibson, Amanda K.; Jessica Rasmussen; Gail Steketee; Randy Frost; David Tolin. 2010. Ethical Considerations in the Treatment of Compulsive Hoarding. Cognitive and Behavioral Practice. Vol. 17, Issue 4:p. 426-438. http://www.sciencedirect.com/science/article/pii/S1077722910000945

Frost, Randy O.; Gail Steketee. 2014. The Oxford Handbook of Hoarding and Acquiring. Oxford University Press. 2014.

Koenig, Terry L Chapin, Rosemary Spano, Richard. 2010. Using multidisciplinary teams to address ethical dilemmas with older adults who hoard. Journal of Gerontological Social Work. February 2010; Vol. 53(2):137-147.

National Initiative for the Care of the Elderly (NICE). Compulsive Hoarding: The ethical dimensions. http://www.nicenet.ca/tools-compulsive-hoarding-the-ethical-dimensions)

Tompkins, Michael A..2014. ‘4.5 Ethical and legal considerations when helping a client with severe hoarding’. In, Clinician’s guide to severe hoarding: A harm reduction approach. Springer. November 2014.

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48. CASE: Shared Experience

You have recently started working as an RN in cardiology at the local pediatric health centre. One of the first cases you are involved with hits a little close to home. It involves a 2-year old patient named Kira who has a congenital cardiac abnormality. The clinical circumstances are similar to what you experienced with your son, Bradley, about four years ago. Bradley spent several weeks in hospital for investigations and you and your partner were faced with a difficult decision about whether to proceed with cardiac surgery. With some understandable trepidation and anxiety, you and your partner agreed to the surgery and Bradley came through it just fine. However, given the nature of the cardiac abnormality, you know how easily it could have turned out differently. You now see Kira’s parents faced with the same difficult choice. They are struggling with what decision to make and are very anxious.

  • Should you discuss your own experience with Kira’s parents?
  • If so, what might you choose to disclose?
  • What biases might you contribute to the situation – should you try to minimize their influence?
  • How will you balance your professional expertise and personal experience?

Part 2

It is about a year later and you run into Kira’s parents in the hallway outside the cafeteria. They have just come from the parents’ bereavement group and are having a tough time living without their daughter. They are organizing a charity event in their community to celebrate their daughter’s life and to generate funds for the pediatric cardiology program. Both parents express how much they would appreciate it if you came to the event and spoke at it in the capacity of one of the individuals who cared for their daughter. The event is scheduled for six weeks from now and the parents indicate that they need to know as soon as possible whether you can participate.

Should you go to this event? If so, should you be a speaker? 

Some Values and Ethics Issues to Consider

  • Compliance with policies and procedures
  • Respect for professional integrity
  • Patient-provider relationships
  • Honesty, trust and truth-telling
  • Overlapping roles and responsibilities
  • Family and community relationships
  • Professional boundaries

34. CASE: To Tell or Not to Tell

The head pathologist of the regional hospital informs the head pathologist of the tertiary care centre that the post-mortem examination of a former patient, Mrs. Dempsey, has revealed that she suffered from a neurological infection called CJD (Creutzfeldt-Jakob Disease). The tertiary centre pathologist reports this to the VP of Acute Care who determines through investigation that Mrs. Dempsey had brain surgery at the tertiary care centre a year and a half ago. At that time, Mrs. Dempsey had a few symptoms consistent with CJD but this diagnostic possibility was not considered by the attending health care team. The surgical instruments used in the Mrs. Dempsey’s surgery were sterilized as per standard protocol and subsequently used in other neurological surgeries at the centre.

Some relevant CJD facts:

  • The involved infectious agent is a prion
  • Prions are transmitted only by neural tissue (brain/nerves) to neural tissue exposure
  • Unlike most infectious agents, prions can survive standard sterilization procedures
  • CJD is a progressive, devastating neurological infection that leads to disabling illness and premature death
  • The usual incubation period from a person’s exposure to CJD to symptomatic infection is 12 to 28 months
  • There is no way to conclusively determine that a person has CJD prior to post-mortem autopsy
  • There is no known treatment for CJD

An ad hoc disclosure working group is struck. In the course of using their hospital’s disclosure policy’s decision-making framework, a participating infectious disease specialist, Dr. Bugg, reports on the clinical literature (evidence) related to CJD disease and its transmission. He expresses his informed opinion that, in the particular circumstances under consideration, there is a theoretical, extremely low risk of past transmission of CJD to patients who had surgery utilizing the potentially contaminated instruments for the month after Mrs. Dempsey’s surgery. Dr. Bugg also comments that, in the last twenty-five years, there have been no reported cases of CJD (world-wide) resulting from patients’ exposure to contaminated surgical instruments.

  • Using your institution’s disclosure policy decision-making framework (or that provided on NSHEN’S website under the “Ethics Resources” tab at http://www.nshen.ca/docs/nshen_adverseevents.pdf), what do you think are the key issues to be considered?

As per Step 7 in NSHEN’s framework, the working group members collaboratively develop a list of benefits and burdens for each of three identified potential disclosure options, i.e., non-disclosure, disclosure to those who have been exposed, and external-public disclosure.

  • Given the facts as presented and using the framework indicated, what decision would you support and why?

 

Some Values and Ethics Issues to Consider

  • Accountability
  • Honesty, trust and truth-telling
  • Compliance with policy
  • Medical error
  • Disclosure of adverse events
  • Patient safety
  • Transparency

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

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

19. CASE: Craig’s Right to Choose?

Craig Renaldo is a 14-year old boy who was recently diagnosed with a right lower leg malignant vascular tumour. Staging investigations have been negative for distant metastases. Craig’s attending medical oncologist, Dr. Purvis, consults a pediatric orthopedic surgeon, Dr. Mendes, who recommends a below-knee amputation. Dr. Purvis concurs with this recommendation given the aggressive nature of the tumour and the lack of other effective treatments – chemotherapy and radiotherapy have had poor response rates in relevant clinical trials. Dr. Purvis estimates that Craig has a seventy percent chance of survival with the surgery and a twenty percent chance without it.

Craig grew up in the Jehovah’s Witness (JW) faith and has been very active in the JW youth community. For the last two years, he and his younger sister Stacy have been living with their maternal aunt and uncle due to the tragic death of their parents in a motor vehicle accident. Uncle Bob and Aunt Kay are strong adherents to their JW faith. Craig and Stacey have a twenty-year old sister, Jane, who is a college student. She left the JW faith community after the death of her parents.

Craig and his aunt and uncle participate in an informed consent process for the proposed surgery including a lengthy sit-down discussion with Dr. Purvis and Dr. Mendes and some other members of the health care team. At the end of this dialogue, Craig and his aunt and uncle, in full agreement, emphatically state that they will not consent to blood transfusion during the surgery due to their religious beliefs. Dr. Mendes indicates that he is unwilling to operate on Craig without such consent given the vascular nature of the tumour and the high likelihood that whole blood transfusions will be required.

The surgical resident contacts Jane who has not been permitted to see or speak to her siblings for the past two years due to her JW fellowship. She expresses concern for the welfare of her brother and is alarmed by the refusal of consent for blood transfusion. Jane strongly believes that blood should be transfused if it is absolutely necessary during the surgery.

The unit manager contacts Legal Services and the health district’s legal counsel, in turn, contacts the Children’s Aid Society (CAS). The CAS supervisor indicates an interest in being involved in health care decision-making in these circumstances. A formal clinical ethics consultation is arranged.

  • What are your ‘gut’ responses to this scenario?
  • What ethics principles and values are at play?
  • Who should make this decision?
  • If the decision is a substituted one, how should such a decision be made?

 

Some Values and Ethics Issues to Consider

  • Substitute decision-making
  • Capacity
  • Spirituality and religious beliefs
  • Patient-family relationships
  • Respect for professional integrity
  • Respect for patient autonomy
  • Compliance with policy

18. CASE: When the “Truth” is Painful

Mrs. Sally Parrot, a 73-year old widow, has mild dementia of a presumed neurovascular type. She resides in her own small apartment in Serenity, a private continuing care community in Bedford, where she receives some assistance with housekeeping, meal preparation and organization of her medications. Sally is actively engaged in Serenity’s structured activities and, in particular, enjoys participating in the music program and walking group. One of her two children, Lorna, resides in Halifax and visits her once weekly.

Sally was recently diagnosed with slowly progressive, metastatic bowel cancer. After talking it over with Lorna and her son Fred, Sally decides to go ahead with a series of recommended palliative treatments: a short course of chemotherapy, de-bulking bowel surgery and low dosage radiotherapy.

After the chemotherapy, which she has tolerated well, Sally is admitted to hospital for her surgery, which involves removal of a section of large bowel that contains the primary tumour. Unfortunately, she develops post-operative delirium, which has been slow to clear over the past few weeks in hospital. At the present time, she is reasonably clear-headed in the morning, but her cognition deteriorates in a ‘sun-down’ fashion as the day progresses.

Seeing how her mother has reacted to surgery, Lorna begins to wonder if the planned third phase of treatment, i.e., palliative radiotherapy, is the still the way to go. She decides to wait until her brother arrives later that week from Australia to sort this out. In the meantime, during the late afternoons and evenings, Sally has begun to ask her health care providers about why she is in the hospital. They tell her that she is in hospital for surgical treatment of her bowel cancer. However, Sally does not retain information for more than ten minutes late in the day due to her delirium-related confusion, so each time the direct care nurses inform her that she has cancer in response to her question, she responds in the same way – with surprise and significant emotional distress.

The nurses consider truth-telling in the disclosure of health information to be an important professional value and practice. However, they begin to wonder whether they are doing more harm than good in responding to Sally’s repeated questions in an honest and forthright way.

A group of nurses who are experiencing moral distress in these challenging circumstances get together and, with the knowledge of their health services manager, contact the clinical ethics service to make a formal request for ethics support.

  • What are the ethics issues in this case?
  • How would you work through the issues with the health care team?
  • Is withholding the truth from a patient ever the right decision?
  • Should alleviating the distress of the patient and/or the health care team be more of a priority than upholding the value of truth-telling?


Some Values and Ethics Issues to Consider

  • Honesty, trust and truth-telling
  • Capacity
  • Substitute decision-making
  • Respect for patient autonomy
  • Moral distress among health care providers
  • Patient-family relationships
  • Respect for human dignity
  • Patient-centered care
  • Respect for professional integrity
  • Beneficence and non-maleficence

8. CASE: Who Should Decide?

This case concerns a 35-year-old developmentally delayed female patient (functional age about 5 years old); her mother is her legal guardian. The patient tested positive for a BRCA gene mutation. Her mother is concerned that her daughter may develop ovarian cancer and wants her to have preventive surgery.

Her physician does not believe this is in the patient’s best interests for the following reasons:

  1. There is only a 15-30% chance she may develop the disease
  2. The procedure does not offer a guarantee against developing cancer
  3. The patient has high risk co-morbid conditions including pulmonary stenosis
  4. The patient is highly averse to medical procedures (becomes extremely anxious and agitated).

Her physician is questioning the mother’s decision and if the surgery should even be offered. He feels surveillance/ screening for the purposes of early detection and treatment is the best option.

  • How do you approach this case?
  • What ethics issues must be considered?
  • Where do the value tensions lie in this situation?
  • Should the mother’s request for surgery be granted despite the physician’s expert opinion?
  • Should the daughter’s aversion to medical procedures be considered?
  • Who should make this decision?


Some Values and Ethics Issues to Consider

  • Capacity
  • Respect for patient autonomy
  • Respect for professional integrity
  • Substitute decision-makers
  • Resource allocation
  • Quality of life
  • Risk

4. CASE: Expectations for Care

Ned is an elderly patient with relatively advanced dementia who is recovering from surgery to repair a hip fracture. He spends most of every 24-hour period screaming unless someone familiar sits with him. Staff members on the unit are becoming increasingly frustrated and stressed. The unit manager has received numerous complaints, verbal and written, from other patients on the unit and from some of their family members. She decides to call the ethics line.

  • What are the ethics issues?
  • What are the non-ethics issues?
  • What underlying values are at stake?
  • How would you respond to this call?

 Some Values and Ethics Issues to Consider

  • Moral distress among health care providers
  • Distributive justice
  • Resource allocation
  • Patient-centered care
  • Capacity
  • Empathy
  • Respect for human dignity
  • Quality of life