Download Facilitator Notes - 68.5 KB

Common Ethical Dilemmas in Older Adults, facilitator notes, page - 1
Bree Johnston, MD MPH
Common Ethical Dilemmas in Older Adults
Small Group Session
1. Students will get the assigned reading, learning objectives, and part I of Case I, Mrs. Hart, prior
to the session.
2. Students should come with thoughts about part I of case I. Have them read it aloud together
anyway to get things rolling.
3. At the beginning of the session, please frame the session. The purpose of the session is to give
them experience in working through ethical dilemmas that are commonly encountered in clinical
practice. Remind them that each of these cases is based on a real patient.
4. Give the handouts sequentially so that students do not look ahead.
5. Review learning objectives at the end of each case and at the end of the session. Ask for
feedback on what could have improved the session, if there is time.
ROUGH TIME ESTIMATES
First 15 minutes:
15 -60 minutes:
60 -75 minutes:
75-105 minutes:
105-120 minutes:
Get settled, introduce yourself, frame the session
Case #1: Mrs. Hart
Case #2: Mrs. Terry
Case #3: Mr. Garcia
Review learning objectives, ask for feedback
KEYWORDS
Aging, autonomy, capacity, competence, confidentiality, dementia, driving, elder abuse, ethics, neglect
public health, public safety, self neglect, surrogate decision maker
Common Ethical Dilemmas in Older Adults, facilitator notes, page- 2 STUDENT INSTRUCTIONS & REQUIRED READING
Prior to the small group session, read the case, think about the guiding questions, and read the
chapters listed below. Subsequent parts of the cases will be distributed and discussed during the
small group session.
Bernard Lo, Resolving Ethical Dilemmas, A Guide for Clinicians, second edition, Lipincott Williams
and Wilkins, 2000
Chapter 5: Confidentiality, pages 45-50
Chapter 10: Decision-Making Capacity, pages 80-88
Chapter 11: Refusal of Treatment by Competent, Informed Patients, pages 89-93
Chapter 12: Standards for Decisions when Patients Lack Decision Making Capacity, pages 94-110
Chapter 13: Surrogate Decision Making, pages 111-120
Learning Objectives:
 Discuss reporting requirements for elder abuse in the State of California;
 Discuss a framework for balancing confidentiality against public health and safety
concerns, using the example of elders who are no longer able to provide food,
clothing and shelter for themselves (self neglect);
 List elements of decision making capacity and discuss the difference between
“competency” and decision making capacity.
 Discuss the issues surrounding the right of a patient to refuse potentially life
sustaining treatment.
 Discuss dilemmas that can arise when dealing with surrogate decision makers, and
an approach to resolving them.
 Discuss a framework for balancing confidentiality against public health and safety
concerns, using the examples of:
 dementia and driving
 elders who are no longer able to provide food, clothing and shelter for
themselves;
Common Ethical Dilemmas in Older Adults, facilitator notes, page - 3
Bree Johnston, MD MPH
CASE 1: Mrs. Hart
Part I
Mrs. Hart is an 80-year-old woman with a history of congestive heart failure, obesity, hypertension, and
severe osteoarthritis. She lives alone and has been largely homebound for the past 5 years. She uses a
wheelchair for getting around the house. She is an Irish-American Catholic and a retired beautician.
Her husband died ten years ago and was a shipyard worker. She has one son who lives in Los Angeles.
She has been getting more short of breath and per her son has been unable to care for herself. Over the
weekend she fell and complained of hip pain to her son. She refused to go to the emergency
department and declined all workup and treatment for the problem. A social worker who was called by
Mrs. Hart’s son has arranged for her to come in to see you at clinic. She has not been seen by a
physician in many years.
Mrs. Hart comes to clinic for evaluation alone by wheelchair van. She is wheezing and obviously
wincing in pain. Physical exam reveals T 37.5, BP 170/100 R 36, pulse 100. HEENT: She has dense
cataracts bilaterally, very few teeth in very poor repair, her hearing is normal. NECK: elated JVP to
12cm CHEST: course crackles bilaterally. CV: PMI is laterally displaced with + S3. ABDOMEN: normal.
EXTREMITIES: 3+ pitting edema to the knees. Severe changes of osteoarthritis of her hands and knees,
and is unable to assist you with getting her up from the chair. She is able to stand but appears to be in
severe pain w/ any weight place on her right hip. Her right hip is slightly internally rotated and is very
painful even on passive range of motion. She admits that she is depressed, and a geriatric depression
screening test is markedly positive. Labs are drawn.
She says that she wants to stay home until she dies, does not want further work-up for her congestive
heart failure nor does she want work up or treatment for a potentially broken hip. You ask if she would
like you to talk with her son about her care and she explains she doesn’t want him involved. She tells
you she doesn’t want him worried and she values her independence above all else. She is willing to take
medications if hey make her feel better. You recommend pain medication, an antidepressant, and a
diuretic. You arrange for a home safety evaluation.
The following week, all of her labs return and they are normal. The physical therapist from the home
care agency says that your patient refused the home visit. You call your patient, and she agrees to have
the physical therapist come if you are present also. You set up a time to visit her at home a week later.
When you arrive at her apartment, you note the stench of garbage. When you open the door, the smell
is worse, the house is extremely cluttered with papers, and flies are everywhere. There is old rotting
food left out, and you see a rat scamper into the kitchen. She appears to have adequate food in the
house, but garbage is piled up. She seems to get her wheelchair around fairly well.
1. What are your current concerns?
2. What do you do next?
Common Ethical Dilemmas in Older Adults, facilitator notes, page- 4 Part I Facilitator Notes
First, try to steer the students away from the medical components of the case to focus on the
ethical issues.
The first task is to determine if the patient has decision making capacity and if she is legally
competent. How does one determine whether a patient has decision making capacity? How is
decision making capacity different than legal competence?
In general, a patient should be considered competent to make medical decisions if she is capable of
giving informed consent. Competence or decision making capacity is decision specific. For
example, a person might be able to state whether they would want a skin lesion removed, but
might not be able to state how to manage investments.
People often get confused between the terms “competence” and “decision making capacity” or
“capacity” and sometimes use the terms interchangeably. Courts view competence as a global
concept when deciding whether a person should be “conserved”, and make the decision based on
a person’s overall ability to reason and function in life (provide food, clothing, and shelter). Some
practitioners find it less confusing to use the term “competence” to refer to global “competence”
as determined by courts, and “decision making capacity” for decision making that is situation
specific.
Below are general elements of decision making capacity.
General standards for decision making capacity (From Lo, page 82)
 The patient must be able to make and communicate a choice.
 The patient must be able to appreciate the medical situation and prognosis.
 The patient must be able to appreciate the nature of recommended care.
 The patient must be able to appreciate he risks, benefits, and consequences of each
alternative.
 Decisions are consistent with the patient’s values and goals.
 Decisions do not result from delusions.
 The patient uses reasoning to make a choice.
This is often less straightforward than this list would indicate, especially when dealing with people
with cultural beliefs that may be different from those of a western scientifically minded physician.
If a person states that they don’t want their leg amputated because their shaman spirit advises
them against it, is that reasoning that is consistent with a patient’s values and goals or a delusion?
It may take some time to sort out. Cultural sensitivity becomes very important in working through
many of these ethical dilemmas.
Some potentially helpful questions for assessing capacity might include:
 “Tell me what you think is wrong with your health right now”
 What is hospitalization for your hip likely to do for you?
 What do you believe will happen if you do have treatment for your hip?
 What do you believe will happen if you do not have treatment for your hip?
 Tell me how you reached your decision
 Tell me what makes treatment for your hip worse than the alternatives
For this woman, there are number of issues. The first is her probable hip fracture and the fact that
she is having difficulty getting around, is incontinent, and has difficulty keeping her surroundings
clean. Although you are not certain what the underlying diagnosis is and whether it is surgically
correctable, you can discuss with her whether she would want further diagnostic evaluation.
The second issue is her ability to care for herself more globally.
Common Ethical Dilemmas in Older Adults, facilitator notes, page - 5
Bree Johnston, MD MPH
HANDOUT 2
CASE 1: Mrs. Hart
Part II
During the home visit, you do a Mini-mental state exam (MMSE) and note that it is 25/30; Mrs. Hart
misses the date, 1/3 items on recall, and 3 serial sevens. Her geriatric depression scale score is a little
better at 8/15, and she says she’s a tiny bit better. She is taking her new medications.
In answer to your questions about potential treatment for her probable hip fracture, Mrs. Hart states
that she has lived with mobility problems for many years, although she admits that the recent fall has
made things worse. The last time she was in the hospital many years ago for a hysterectomy, she had a
number of complications, was in bed for months, and felt that she never regained her former level of
functioning. She does not want to go through that again, and as a result, has avoided doctors, hospitals,
and surgery. “Even if I have cancer, let it get me”.
She knows that her apartment is dirty, but she says “I am managing just fine. I would rather live here
with my old furniture than live in an institution that would remind me of the orphanage of my youth. I
want to die at home.”
You ask Mrs. Hart if she would be willing to hire somebody to clean her house and provide her with more
help. She states that she wants to stay at home and she is unwilling to pay for anyone to come in and
help her. Mrs. Hart says that she is managing just fine, and she wants to save her money for a rainy day
and to pass down to her son. You ask if you can talk with her son about her living situation and she
explains she does not want her son taking care of her.
1.
Do you think she has decision making capacity?
2.
Does the MMSE help you determine if she is competent or has decision making capacity?
3.
If she is clinically depressed, would that impact your judgment on whether she has decision
making capacity?
4.
Do you think she is legally competent?
5.
At what point would you say that she can no longer care for herself?
6.
Should she be reported to Adult Protective Services as a case of elder abuse?
7.
When is it justifiable to violate confidentiality by reporting someone to Adult Protective
Services, the public health department, or the fire marshal?
8.
Should you call her son without her permission and discuss her living situation?
Common Ethical Dilemmas in Older Adults, facilitator notes, page- 6 Part II Facilitator Notes
Do you think she has decision making capacity?
She is able to articulate her condition, the treatment alternatives, and the reasons for her
decisions. Although you may not agree with her decisions, she at least seems to be internally
consistent.
Does the MMSE help you determine if she is competent or has decision making capacity?
Although the MMSE may help give a sense of the degree of impairment, decision making capacity
really should be based on whether a person understands their condition, treatment alternatives,
and can voice how they make their decisions. Although it is likely that a person with a MMSE of
30/30 would have decision making capacity, an acutely psychotic person might actually do very well
on a MMSE and be lacking in decision making capacity due to delusions or disordered thinking.
Alternatively, a person with a very low MMSE might be able to understand some simple medical
decisions.
If she is clinically depressed, would that impact your judgment on whether she has decision making
capacity?
Depression can often impair decision making, but the presence of depression does not rule out that
the person has decision making capacity. The person’s prior values, stated wishes, prognosis, and
burdens and benefits of treatment must all be taken into account.
Do you think she is legally competent?
Her ability to discuss her decisions rationally with you argues for her global (or legal) competence.
Normally (but not always) if a person is able to provide food, clothing, and shelter, they will be
determined to be legally competent by a judge. However, that sometimes becomes a judgment
call. When is a house so cluttered or dirty that it is no longer providing “adequate shelter”?
When is it justifiable to violate confidentiality by reporting somebody to APS, the public health
department, or the Fire Marshall (we’ll talk about driving later).
Aesthetics aside, that usually occurs if there is some threat to health or safety – an extreme fired
hazard, vermin, or an unsafe structure. In those instances, the public good would outweigh
confidentiality and autonomy. In her case, the flies, feces, and rat would make one concerned
that she is “close to the line” of not providing for herself and being a threat to public health.
Should she be reported to Adult Protective Services as a case of elder abuse?
California law requires reporting in all cases of elder abuse, neglect, or self neglect.
Is this self neglect? According to law, yes. Have the students look at and interpret the law and
debate the issue. Also, it might be interesting for them to debate the legitimacy of self neglect as a
category.
Adult Protective Services (APS) should be contacted in this case, since her functioning is marginal as
is her ability to provide adequate shelter. APS would make a report to the Public Health
Department or Fire Marshall if they are sufficiently concerned, and that might be used in court if
there were a competency hearing. APS usually looks at supportive, not punitive, solutions, such as
providing increased social services, meals on wheels, or caregiver support.
Whether or not APS is involved, if you are concerned about public health or fire safety, a call to the
local health or fire department describing the environment can help determine if the risk is high
enough that confidentiality should be violated and a report should be made.
At what point would you say that she can no longer care for herself?
The reality is that many people like Mrs. Hart live marginally, but are competent. As long as she
can articulate her preferences and provide food, clothing, and shelter she will probably be deemed
competent. As professionals, the best we can do is offer people like this respect, support,
Common Ethical Dilemmas in Older Adults, facilitator notes, page - 7
Bree Johnston, MD MPH
alternatives, and encouragement to seek help. We can try to be there to catch them when (and if)
they finally fall through the cracks.
It would be definitely be ideal if you could talk with Mrs. Hart’s son. As she is legally competent,
however, you cannot without her consent. You can encourage her to bring her son to appointments
or continue to suggest you would like to speak with him.
Case #1: Mrs. Hart
Learning Objectives:
 Discuss reporting requirements for elder abuse in the State of California;
 Discuss a framework for balancing confidentiality against public health and safety concerns,
using the example of elders who are no longer able to provide food, clothing and shelter for
themselves (self neglect);
 List elements of decision making capacity and discuss the difference between “competency”
and decision making capacity.
Readings:
Resolving Ethical Dilemmas: A Guide for Clinicians, Bernard Lo, MD
Chapter 10, Decision Making Capacity
Common Ethical Dilemmas in Older Adults, facilitator notes, page- 8 -
HANDOUT 3
CASE 2: Mrs. Terry
Part I:
Mrs. Terry is a 70-year-old woman with diabetes and a long history of neuropathy, peripheral vascular
disease, and coronary artery disease. She is widowed, has three daughters, and lives alone. She is
active, gardens, plays bridge, enjoys friends, and reads books. She identifies as Chinese American, but
notes her late husband was born in England. She is a retired homemaker and her late husband was a
businessman.
Mrs. Terry develops a small ulcer on her right malleolus. She is seen by a vascular surgeon who advises
an angiogram to which Mrs. Terry agrees. Unfortunately, the angiogram reveals that a bypass is not
possible. Because the wound grows and a localized infection develops, an amputation is advised. Mrs.
Terry says that she would rather die than have an amputation.
Mrs. Terry’s wound worsens, and she is admitted to the hospital for intravenous antibiotics and wound
care. Her daughters come in from out of town to help. Mrs. Terry notes her eldest daughter, who has
been the durable power of attorney for health care for years, generally helps her make financial and
medical decisions. This eldest daughter wants her mother to have an amputation. Efforts to talk Mrs.
Terry into an amputation fail. Mrs. Terry is adamant and tells all three daughters she is not changing her
mind. A psychiatry consultant says that she is competent. Furthermore, the other two daughters state
that this is consistent with Mrs. Terry’s long held beliefs and that they support her decision.
Mrs. Terry becomes more ill, septic, and obtunded and is no longer able to have discussions. Intravenous
antibiotics are continued, but the surgeons state that the antibiotics have no chance of curing her if she
does not have an amputation. The oldest daughter, the traditional decision maker in the culture, states
that since her mother can no longer make decisions, the daughter now wants the amputation
performed. The other family members request that the ethics committee be called.
You are on the ethics committee. How do you approach this case?
Part I Facilitator Notes
Ms. T. is no longer able to participate in her own decision making, so her durable power of attorney
for health care is the person who is empowered now to make health care decisions on her mother’s
behalf. Unfortunately, in this case, the durable power of attorney’s wishes appear to conflict with
the previously stated wishes of the mother. What is the right thing to do?
An initial approach would include bringing the involved parties together – surgeon, primary care
physician, psychiatry, and all available family members – to have a discussion. It would be
important for the health care professionals to act as advocates for the patient’s wishes. It might be
useful to try to probe for why the daughter is requesting the amputation against her mother’s
stated wishes. Perhaps the daughter is in denial about her mother’s impending death, doesn’t
understand why the mother would choose death over an amputation, or doesn’t want such a large
burden. It might be that if others on the team take more responsibility for the decision, the
daughter could accept it more easily.
As the discussion unfolds with the family, it is clear that the other siblings want to respect their
mother’s decision, and that the surrogate decision maker feels that she “can’t be the one
responsible for letting Mom die”.
If consensus cannot be reached, this would be a situation in which the ethics committee and the
health care team should override the surrogate decision maker. The mother apparently has long
Common Ethical Dilemmas in Older Adults, facilitator notes, page - 9
Bree Johnston, MD MPH
standing beliefs that have been consistent with her recent choice. She very recently stated a
strong preference about this particular decision, and understood the consequences of her decision.
She was competent at the time of the decision. Patients have the right to forego to life sustaining
treatments. If physicians forced a competent patient to have surgery against her will, it would be a
case of battery. The fact that the patient is unconscious today changes very little, since she
recently expressed her wishes so clearly.
As it evolves, the daughter seems relieved to be somewhat unburdened of the responsibility for
making the decision for her mother, and is willing to go along with the recommendations to treat
the mother palliatively. Many people feel overwhelmed by the responsibility of making life and
death decisions as a durable power of attorney and need tremendous support and guidance from
health care teams.
This situation might need to be weighed different if the patient had not clearly stated her wishes or
had uncertain decision making capacity, particularly if the burdens of the intervention were
minimal and benefits marked (as in a course of antibiotics or excision of a skin cancer).
Family conflicts often to not reach resolution, as this one did.
Common Ethical Dilemmas in Older Adults, facilitator notes, page- 10 HANDOUT 4
CASE 2: Mrs. Terry
Part II
The Ethics Committee, the physicians, and all of the siblings other than the durable power were arguing
to respect the Mother’s wishes and let her die. After extensive talks, the eldest daughter finally says,
“You can let Mom die if you think that is the best thing to do, but I just can’t be the one to make that
decision.” The family had further discussions alone, and seemed to be in agreement, though tearful,
when they came out of the conference room.
The mother’s antibiotics were discontinued, her pain medications were increased, and she died the next
day with her family at her bedside.
Case #2: Mrs. Terry
Learning Objectives
By the end of this session, the student should be able to:
1. discuss the issues surrounding the right of a patient to refuse potentially life sustaining
treatment.
2. discuss dilemmas that can arise when dealing with surrogate decision makers, and an approach to
resolving them.
Readings:
Bernard Lo, Resolving Ethical Dilemmas, A Guide for Clinicians, second edition, Lipincott Williams
and Wilkins, 2000
Chapter 11: Refusal of Treatment by Competent, Informed Patients, pages 89-93
Chapter 12: Standards for Decisions when Patients Lack Decision Making Capacity, pages 94-110
Chapter 13: Surrogate Decision Making, pages 111-120
Common Ethical Dilemmas in Older Adults, facilitator notes, page - 11
Bree Johnston, MD MPH
HANDOUT 5
CASE 3: Mr. Garcia
Part I
Your new patient is Mr. Garcia, an 85-year-old farmer from Modesto. He self identifies as Latino and
Jehovah’s Witness. His son and daughter, who live in here in San Francisco, bring him in because of
their concern that he is “starting to lose his memory”. He lives alone on a farm, and his wife of many
years died 8 months ago. Shortly thereafter, his family noted that he began to have more trouble
keeping track of dates and events. It appears that perhaps he is not keeping track of their investments
as closely as he formerly had. Overall, however, he is doing well. He continues to garden, enjoys his
dogs, and has friends. There is another couple that lives on the farm, and they now do most of the
heavy work and run the farm related business.
His general examination is unremarkable, and he is exceedingly pleasant and upbeat. Mr. Garcia’ MMSE
exam is 23/30; he misses 2/3 objects, has trouble with “world” and serial 7s, and misses the date by
one day. He has a 12th grade education. You note that he is not necessarily in the abnormal range, based
on age and education norms, but you suspect that he has mild dementia. You remember that your
attending told you that you need to report all cases of dementia to the health department. But how do
you handle this one? You aren’t sure, but you are highly suspicious.
His family wants you to tell Mr. Garcia to stop driving. Mr. Garcia says that if he doesn’t drive, he will
be robbed of his independence and happiness. He notes he has to drive in order to get to church, where
he is a deacon. He has tried living with his daughter in SF but didn’t like the church or city life. He
complains his kids work all day, the grandkids are in school activities until late, and there’s nothing to
do in his daughter’s condo. “There’s no garden, nothing to fix…I’d rather wear out on my farm than rust
out in the city!” You want to protect public health and safety, but you also want to help him maintain
his independence and the life that he is used to. You are scared that if you advise that his license be
taken away, he won’t come back to see you.
1.
What are your legal requirements?
Case #3: Mr. Garcia
Part I Facilitator Notes
At this point you are suspicious, but not certain, that the patient has mild dementia. For a person
to have dementia, they must have deficits in short term memory and at least one other area (e.g.,
executive function, visuospatial function) and the impairment must be severe enough to interfere
with functioning. He is borderline based on your currently available information, and so you are
not legally required to report him to the Health Department. You would be required if he clearly
met criteria for dementia.
Elicit the Students thoughts: what would they do at this point?
Suggestions:
Get additional information from the family. The fact that the family is concerned raises concerns.
What are their concerns based on? Have they seen examples of poor driving? Is he still operating
dangerous farm machinery? (As it turns out, they have seen no evidence of driving deficits, they
have just heard about problems of older demented people driving).
Get additional information with neuropsychological testing to see how severe his deficits really are.
Advise the patient to get a driving test to ensure he is safe
Common Ethical Dilemmas in Older Adults, facilitator notes, page- 12 HANDOUT 6
CASE 3: Mr. Garcia
Part II
You elect to get neuropsychological testing and advise Mr. Garcia to get a driving test to be sure he is
safe. The neuropsychological testing reveals very mild dementia consistent with the Alzheimer’s type,
with mild deficits in short term memory and executive function. The neuropsychologist did not discuss
the results with the patient.
He returns four months later, and his family now reports that he is no longer able to balance his
checkbook; he is getting lost, and was in one traffic accident where he was observed to have run a red
light. Luckily, nobody was seriously injured.
1.
Now what do you do? Do you tell him he has dementia?
2.
How do you handle the driving issue now?
Part II Facilitator Notes
Do you tell him he has dementia?
Many patients with early dementia are able to at least partially understand that they have a
dementing illness. However, not all patients want to know. Some patients with more advanced
dementia or particularly poor insight might not understand the diagnosis. It is probably in the
patient’s best interest to tell them that you have results from their memory testing - would they
like to know what they are? This gives patients the option to opt out of hearing the diagnosis.
When giving the diagnosis, the response may vary widely. Some people feel relieved “I knew
something was wrong”, other may be distressed and upset; still others might not grasp the meaning.
It is important to respond to the patient wherever they might be. Regardless, it is important not to
be all gloom and doom, as many patients have a good quality of life during much of their dementing
illness. And medications like donepezil are often helpful, if only modestly so. It is important to try
to get people to do advance directives and have discussions about life sustaining treatments early
when the patient can still express him/herself.
How do you handle the driving issue now?
The patient now meets criteria for dementia, since he has deficits in two areas and impairment in
his functioning. Thus reporting to California Health Department is mandatory. They then send a
report to the DMV, who generates a driving report (hand information and DMV form out at this
time). Different states handle this quite differently.
Other avenues might be explored to help him retain his current life. His fellow church members
may help take to church and help with shopping. The other couple on the farm might also help
with shopping. A neighbor or church member might be willing to talk with his daughter regularly to
give updates on Mr. Garcia’ memory.
Case #3: Mr. Garcia
Learning Objectives
By the end of this session, the student should be able to:
1. discuss a framework for balancing confidentiality against public health and safety concerns,
using the examples of:
a. dementia and driving
b. elders who are no longer able to provide food, clothing and shelter for themselves;
Readings:
Chapter 5: Confidentiality, pages 42-51
Common Ethical Dilemmas in Older Adults, facilitator notes, page - 13
Bree Johnston, MD MPH