Case Background

This case is written from a primary care perspective with a focus on end-of-life decision making and anticipatory guidance of the patient and caregiver.  This is a short-term caregiving situation where an older couple is suddenly faced with the wife’s terminal diagnosis and rapidly declining health.

Learning Objectives

1. Describe key issues faced by the patient, the caregiver and the physician when making health care decisions for a patient suddenly given a terminal diagnosis.
2. Discuss ways to help prepare the patient and the family caregiver for the illness trajectory, management of symptoms and care required for a terminal illness.
3. Identify resources and referrals that could provide support to caregivers caring for persons at end of life.

Relevant Milestones

Internal Medicine

• Patient Care #2
• System-Based Practice #1
• System–Based Practice #4
• Professionalism #1
• Professionalism #2, and
• Interpersonal and Communication Skills #1

Family Medicine

• Patient Care #2
• Medical Knowledge #2
• System-Based Practice #1
• System-Based Practice #4
• Professionalism #3
• Communication #1, and
• Communication #2

Case Part I

Mrs. Palmer is a 72-year-old Caucasian female who is diagnosed with small cell lung cancer with metastasis to the liver. Her prognosis is poor with 4-6 months to live. Prior to her diagnosis, she was without any significant health problems. The diagnosis is so sudden that Mrs. Palmer nor her husband can comprehend the gravity of the situation. They request aggressive treatment.

Mrs. Palmer and her husband have been married for 53 years and have two sons who live out of state and a daughter who lives locally. Mrs. Palmer, who has always had a great zest for living, sings in the church choir and helps with the care of her two grandchildren while her daughter works. Mr. Palmer, age 76, has advanced COPD which is managed by medication. Mr. and Mrs. Palmer live independently in a two story home.

Discussion questions

1. What are your feelings/assumptions about this case?
2. What more information do you need from the caregiver?
3. What are your goals and desired outcomes for the visit?  How are they the same and how are they different from the patient and caregiver?
4. What could you do to better understand the patient’s and caregiver’s values and underlying issues?
5. What do you do today?

Case Part II

Mrs. Palmer does not respond well to the chemotherapy and becomes quite ill, requiring a great deal of care.  Mr. Palmer encourages her to fight the cancer and feels she can beat it.  While his health has markedly deteriorated, he insists that he is able to take care of her at home.

Discussion questions

1. What resources are available to help Mr. Palmer care for his wife at home?
2. What is your role in insuring that Mr. Palmer gets the resources he needs to care for his wife?
3. How do you prepare Mrs. and Mr. Palmer for her illness trajectory, symptom management and end-of-life care?
4. How do you feel about continuing aggressive treatment?  What are some alternatives? How do you communicate this to Mrs. and Mr. Palmer?
5. What concerns do you have about Mr. Palmer?
6. How do you incorporate other family members into the situation?  What about their feelings, goals, input into the decisions?

References

Case Authors
Margaret Sanders, M.A., LSW; Barbara Palmisano, B.S.N., M.A.; Jennifer Drost, D.O., M.P.H.; Steven Radwany, M.D.; and Ronald Jones, M.D.

Case Background

This is a case of caregiver stress and burnout. An elderly woman, in a state of acute emotional distress, calls the physician in the night.

Learning Objectives

1. Describe ways to defuse a highly emotional phone encounter with a stressed family caregiver.
2. Identify key information that you can obtain over the phone in order to assess the urgency of a stressful caregiving situation.
3. Discuss the follow-up needed to further assess and provide ongoing support to the patient and caregiver who is under great duress.

Relevant Milestones

Internal Medicine

• System-Based Practice #4
• Professionalism #1
• Professionalism #3
• Interpersonal and Communication Skills #1, and
• Interpersonal and Communication Skills #2

Family Medicine

• System-Based Practice #4
• Professionalism #3
• Communication #1, and
• Communication #2

Case Part I

You get a call in the night from Mrs. Riche, who is in tears. She says she cannot take the stress of caring for her husband any longer. She doesn’t know what to do because she promised never to put him in a nursing home. Neither she nor her daughter sleep at night and she is becoming increasingly exhausted and overwhelmed. Mr. Riche is large in stature and difficult to manage when he is confused. She has had to call the neighbor several times in the night to help get him off the floor after a fall.

Mr. Riche is an 84-year-old African American male with diabetes, hypertension and end-stage renal disease. He has been on dialysis three times a week for the past two years. Over the course of these two years, he has become increasingly frail, falls frequently and has suffered major complications from the dialysis. He has been hospitalized several times for infections and experienced severe confusion with each hospitalization. At times he became belligerent and aggressive with the hospital staff, especially at night.

Discussion questions

1. What do you say to Mrs. Riche to help calm her down and defuse the situation?
2. What more information do you need to know to assess the urgency of the situation?
3. What are your options at this time?

Case Part II

In the morning you talk to your colleague who has seen the patient for several years.  She tells you that Mr. Riche lives with his 86-year-old wife and 55-year-old daughter who is disabled.  He was always a kind and gentle man who generously took care of his family and friends.  His wife is devoted to his care and has refused to have help in the home.  She has been diligent about preparing his special diet and managing his medications.  During his last office visit Mr. Riche was lucid, well-groomed and pleasant.  When the caregiving situation was discussed at that visit, Mrs. Riche stated that things were fine.

Discussion questions

1. What are your recommendations to your colleague?
2. Who else should be involved in the case?
3. What community resources might be available to help this family?
4. What are your concerns and responsibilities to the caregiver?

References

Case Authors
Barbara Palmisano, B.S.N., M.A.; Margaret Sanders, M.A., LSW, Steven Radwany, M.D.; and Ronald Jones, M.D.

Case Background

This case focuses on management of the conflict of interest between the patient and caregiver’s best interests due to complex medical and social issues in the home.

Learning Objectives

1. Discuss how the family dynamics and long term familial relationships may impact patient care and caregiver responsibilities
2. Discuss issues to be considered in prioritizing a management plan in caregiving situations with complex medical and social problems.
3. Describe the professional responsibilities to the patient and caregiver when their best interests are in conflict.
4. Identify community mental health and service resources to aid families in conflictual caregiving situations.

Relevant Milestones

Internal Medicine

• Patient Care #2
• System-Based Practice #4
• Professionalism #1
• Professionalism #3
• Interpersonal and Communication Skills #1

Family Medicine

• Patient Care #2
• Medical Knowledge #2
• System-Based Practice #4
• Professionalism #3
• Communication #1
• Communication #2

Case Part I

Betty is a 55-year-old Caucasian female with multiple medical problems. She is bed bound from advancing multiple sclerosis. She had been neglected by her husband and has multiple pressure ulcers that require constant care.  She also has osteopenia, GERD, osteomyelitis, anemia, depression and glaucoma. Betty has a heart murmur from a congenital heart condition that was surgically repaired when she was a child. Betty is paraplegic with no feeling from the waist down. She has frequently recurring urinary tract infections and developed urinary incontinence. Because of spousal neglect, the daughter, Angela, moved Betty to her own home and provides round-the-clock care. Betty is now divorced, but is frequently tearful about still having feelings for her husband. He is not allowed to visit because he sexually abused Angela as a child and she wants nothing to do with him. He is also a frequent drug user. Betty is also distraught over her ex-husband getting their son involved in drugs as well. The son does not call or visit even though he is allowed to contact his sister.

Betty, accompanied by Angela, comes to the office for routine visit. While Betty has many medical needs she has no new complaints. Angela, pulls you aside in the hallway and states that she has been struggling more to meet her mother’s needs.

Discussion questions

1. What are the caregiver issues Angela is dealing with?
2. What are some of Angela’s most pressing issues today?
3. What resources might you suggest to help Angela and Betty?
4. What other team members should be involved?

Case Part II

ITransportation to the many specialists for medical care is difficult and is an all-day job to accomplish. Lifting Betty to give baths is too difficult for Angela on her own, so her husband helps with that. Her daughter or husband will occasionally watch Betty while Angela goes out, but even then she is on-call to them. Nursing home respite is available to Betty to give Angela a break, but Betty refuses to go saying she is afraid it will lead to permanent placement. The tension between Betty and Angela comes to a head when she brings up wanting to call her ex-husband. This disagreement has brought out anxiety and depressive symptoms in Angela related to PTSD that was never treated during her childhood. She also wonders how long she can keep up this kind of schedule.

Discussion questions

1. What feelings/biases does this case evoke from you?
2. What are your responsibilities to Betty?  What are your responsibilities to Angela?  How are these in conflict?  How could the conflict be managed?
3. How might you engage the caregiver/family and patient in identifying their own strengths and weaknesses?
4. What is your plan for follow-up?

Notes to Faculty

Key Learning Points

• It is important for residents/learners to recognize how complex interpersonal dynamics and family histories impact current interactions with patients and caregivers. Identifying and giving voice to these histories may improve the caregivers’ ability and quality of life to continue to provide care.
• It is important to ask what the caregiver’s needs are rather than making assumptions based on the provider’s values and perceptions.
• Communication and establishing a trusting relationship with both the patient and  caregiver is a critical part of the management plan.

Teaching Tips

This case would make a good role play. Look for key phrases in the learner that show empathy and non-judgmental approach to problem-solving.

References

Case Authors
Jon Thomas, Ph.D.; David Sperling, M.D.; Jenifer Drost, D.O., M.P.H.; Michael Blackie, Ph.D.; Louise Highman, LSW; Barbara Palmisano, BSN, M.A.; Margaret Sanders, M.A., LSW; and Kristen Baughman, Ph.D.

Case Background

This is a case where safety is a concern for both the patient, who has dementia, and his wife who is his caregiver.

Learning Objectives

1. Describe the unique challenges of caring for a person with dementia.
2. Discuss ways to address driving concerns and other major safety issues for the patient and caregiver.
3. Identify team members and community resources that could help support caregivers of persons with dementia.

Relevant Milestones

Internal Medicine

• Patient Care #2
• System-Based Practice #4
• Professionalism #1
• Professionalism #3
• Interpersonal and Communication Skills #1
• Interpersonal and Communication Skills #2

Family Medicine

• Patient Care #2
• Medical Knowledge #2
• System-Based Practice #4
• Professionalism #3
• Communication #1
• Communication #2

Case Part I

Maria (age 79) and Carlos (age 80), both Hispanic, are patients at the family medicine clinic. Maria has a history of hypertension, osteoarthritis, insomnia and general anxiety. Carlos has hypertension, osteoarthritis, hyperlipidemia, atrial fibrillation and dementia. Maria has always been dependent on Carlos to care for the house and do all of the driving. She has begun to do some of the driving, but it makes her very nervous. She has worsening insomnia because Carlos does not sleep very well. He will wake up and wander around the house digging into things for no reason. Household items come up missing (remote, keys, kitchen utensils) and are seldom found. Carlos has been taking memantine HCL for some time, but it seems of little use as his dementia progresses. The house has some safety/maintenance issues that have gone unfixed.  Carlos can no longer handle it and they have limited income to hire someone. Today they are here at their daughter’s urging because Carlos has become more oppositional and difficult with Maria.

Discussion questions

1. What are the issues Maria is dealing with?
2. What are the issues Carlos is dealing with?
3. What are some cultural issues that should be explored?
4. What more information would you like to have?
5. What are Maria’s and Carlos’ most pressing needs today?

Case Part II

Carlos refuses to listen to Maria and speaks angrily to her.  She tells you she cries every day because she does not know what to do for Carlos.  She cannot do things on her own because he cannot be left alone.  This causes her to feel lonely and she misses her friends from church and the beauty salon.  She tearfully confides that she worries he may become combative and she won’t be able to handle him, but refuses to consider any type of placement.  “I took care of my father and I plan to take care of Carlos.”  Her daughter and son-in-law are willing to help, but they both work so have limited availability.  As the interview ends, “Oh by the way, he has been getting lost when he drives us around.  What should I do about that?”

Discussion questions

1. What resources might you suggest to help Maria and Carlos?
2. What team members do you engage in this case?
3. Is your approach any different if both Maria and Carlos are your patients than if only Carlos is your patient?
4. How do you communicate your concerns to Maria? To her daughter?
5. What is your plan for follow-up?

References

Case Authors
Jon Thomas, Ph.D.; David Sperling, M.D.; Jennifer Drost, D.O.; Barbara Palmisano, M.A.; Margaret Sanders, M.A., L.S.W.; Michael Blackie, Ph.D.; and Kristin Baughman, Ph.D.

Case Background

This case takes place in a hospital setting and has a focus on informed consent and medical decision-making.  A key issue of the case is communicating options of treatment with family members including potential consequences on the patient’s quality of life.

Learning Objectives

1. Describe ways to communicate treatment options, along with risks and benefits to family members to obtain informed consent for a patient.
2. Discuss the challenges of family conflict over health care decisions at end-of-life and ways to attempt resolution.
3. Identify team members who can assist families experiencing conflict in medical decision making for loved ones with terminal illness.

Relevant Milestones

Internal Medicine

• Patient Care #2
• System-Based Practice #4
• Professionalism #1
• Professionalism #3
• Interpersonal and Communication Skills #1
• Interpersonal and Communication Skills #2

Family Medicine

• Patient Care #2
• Medical Knowledge #2
• System-Based Practice #1
• System-Based Practice #4
• Professionalism #3
• Communication #1
• Communication #2

Case Part I

Mr. Chin Lee, an 83-year-old widowed male of Chinese decent, has moderate dementia.  Medical history discloses well controlled hypertension and stable coronary artery disease.  Surgical history includes a CABG ten years prior and remote appendectomy and cholecystectomy.  He is cared for at home by his daughter, Annie, who is a nurse.  Mr. Lee is fairly functional, but requires daily supervision due to his dementia and cannot live alone.  He is communicative and recognizes his family members, but is occasionally heard speaking Chinese dialect to his dead wife.  His son, James, also lives in the area and is involved in his care as well. James and Annie have been jointly making their father’s medical decisions for the past two years, but neither one has an official medical POA.

Mr. Lee presented to the emergency room with nausea and vomiting of two days’ duration. Radiologic studies suggest a bowel obstruction and a nasogastric tube is placed for decompression.  His symptoms rapidly resolve but further workup discloses an apple core lesion of the descending colon.  There is no evidence of spread to the liver, lungs or lymph nodes.  When the findings are discussed with his children, James strongly favors surgical removal of the cancer.  Annie seems neutral.

Discussion questions

1. What would you recommend to the children?
2. Would you discuss it with Mr. Lee?
3. What are the cultural issues to consider?
4. How specifically would you consent the procedure with the children?
5. What contingencies would you discuss?

Case Part II

After surgery, Mr. Lee initially does very well.  He begins taking liquids by day 4 and is ambulating with the assistance of staff and physical therapy.  At 4 AM on postoperative day 5 he becomes increasingly confused and his condition deteriorates.  He is tachycardic, tachypneic and hypoxic and is found to have a right lower lobe pneumonia which is likely due to aspiration. He requires transfer to ICU, intubation and mechanical ventilation.  He improves slowly with antibiotics and pulmonary toilet.  By postoperative day 10 he is able to be extubated.  He is awake, but is more confused than his baseline.  A fluoroscopic swallow study demonstrates poor oropharyngeal muscle control and obvious vocal cord penetration.  The recommendation is made for PEG tube placement.  In addition, you are concerned that his respiratory status may deteriorate again and want to address possible re-intubation with the family.

Annie states that her father’s condition is going down a road they didn’t want to travel.  He had always said that he didn’t want to ‘be kept alive on a machine’.  He was a proud and fiercely independent man prior to his dementia.  She confessed that she was a bit reluctant about consenting to the surgery, but her brother it was adamant.  Now she regrets the decision and wants to stop all further treatment.  James wants to continue an aggressive approach.  He wants him to have a PEG and remain Full Code.  He says that his father has always been a very strong man.  He feels that Mr. Lee will be able to pull through this and thinks that Annie is “giving up on Dad too early”.

Discussion questions

1. How would you discuss this with the children?
2. Who makes the final decision?
3. What role does Mr. Lee play in this process?
4. For what contingencies do you prepare the children?
5. From whom do you seek assistance?

References

Case Authors
Steven Radwany, M.D.; John Fondran, M.D.; and Barbara Palmisano, B.S.N., M.A.

Case Background

This scenario takes place in the hospital and involves conflicted family dynamics and disagreements over patient values and quality of life issues.

Learning Objectives

1. Identify ways to assess patient values and wishes when there are no written advance directives.
2. Describe the considerations of the caregiver when she/he has no legal rights as decision-maker.
3. Discuss approaches and resources that may assist in resolving family/caregiver conflicts.

Relevant Milestones

Internal Medicine

• Patient Care #2
• System-Based Practice #1
• Professionalism #1
• Professionalism #3
• Interpersonal and Communication Skills #1
• Interpersonal and Communication Skills #2

Family Medicine

• Medical Knowledge #2
• System-Based Practice #1
• System-Based Practice #4
• Professionalism #3
• Communication #1
• Communication #2

Case Part I

Jackie, is a 66 year old Caucasian female who is brought into the emergency room unresponsive.  Her friend, Fran, found her unconscious on the floor and called for emergency transport.  She is immediately transferred to ICU and put on a ventilator.  She has never married and her closest relative is a sister who lives four hours away.  The sister is contacted by phone and tells you, that to the best of her knowledge, Jackie has no advance directives.  The sister insists that Jackie be full code.

Jackie was diagnosed with lymphoma ten years ago and was treated by chemotherapy resulting in damage to her heart.  Over the years she has become functionally dependent in most of her ADLs due to her shortness of breath, chest pain and frailty.  Fran, who has lived with her for almost 30 years, is her full-time caregiver.

Discussion questions

1. How do you feel about Jackie’s code status?
2. What more information do you need?  Who do you get the information from?
3. How do you determine what Jackie would want done?

Case Part II

The next day Jackie’s sister arrives with her two adult children.  They have not seen Jackie in several years, but they say they were close to her.  They state that Jackie had a fear of dying and, therefore, did not go to the doctor very often after her chemotherapy was completed.  They seem to resent Fran and feel that she kept Jackie isolated from them.  They ask you to put Jackie on a heart transplant list and be very aggressive in her treatment.

Fran asks to speak to you in private.  Fran tells you that she and Jackie have been partners for 35 years, but Jackie was never comfortable in disclosing their relationship to others.  She is adamant that Jackie would not want aggressive treatment.  Jackie and she have had long talks about their religious beliefs and what death might be like.  Fran tearfully tells you that Jackie was concerned that she was becoming a burden and was prepared for death.  While Fran is not ready to lose her, she will honor her wishes and have her die in peace at home.

Discussion questions

1. How does this information change your treatment plan?
2. Who has the right to make the decisions on Jackie’s behalf?
3. Which team members would you involve to help with this case?
4. What are issues/concerns facing Fran as Jackie’s caregiver?

References

Case Authors
Steven Radwany, M.D.; John Fondran, M.D.; and Barbara Palmisano, B.S.N., M.A.

Case Background

This case highlights the impact of the loss of the caregiving role and complicated grief.  This is a long term caregiving situation where the son is the full-time care provider.

Learning Objectives

1. Identify risk factors and symptoms of complicated grief for caregivers.
2. Describe how to communicate personal loss after the death of a patient and express condolences to family members.
3. Discuss how gender biases may impact the provider’s interactions with caregivers.

Relevant Milestones

Internal Medicine

• System-Based Practice #4
• Professionalism #1
• Professionalism #3
• Interpersonal and Communication Skills #1
• Interpersonal and Communication Skills #2

Family Medicine

•  Medical Knowledge #2
• System-Based Practice #4
• Communication #1
• Communication #2

Case Part I

Dave comes to your office with complaints of depression, fatigue and lack of motivation.  He is the son and was the primary caregiver of your patient, who died six months ago from long term complications of a stroke.  You cared for her for years and despite her complicated medical problems, she always had a smile and was a delight to be with.  Dave cared for his mom in his home for 7 years.  The last three years she required 24 hour care and became increasingly dependent on her son for all activities of daily living.  They had a home health aide three days a week for her personal care, but she was very anxious when he was not in the home.  He retired early from his position as director of Habitat for Humanity.  His sister who lives out of town provided some financial assistance and visited when she could to give him a brief respite.  Because of his mom’s care needs in the past several years he was not able to come see you for his medical issues.

Discussion questions

1. How do you express your condolences to Dave?
2. What is your first step in assessing Dave’s symptoms?
3. Is his grief normal?  What potentially complicates his grief?
4. What other things do you want to know about Dave?
5. What concerns do you have for his well-being?

Case Part II

Dave confides that he has lost touch with many of his friends as they did not understand why he did not place his mom in a nursing home so that he could continue to live his life.  David and his mom had always had a special relationship and he felt privileged to be able to care for her.  He no longer knows what to do with his days and feels lost and without purpose.  His sister encourages him to relocate close to her in California where he can get a fresh start.  He knows that his mom would want him to be happy.  He has always tried to live a healthy life and is reluctant to take medications.

Discussion questions

1. What questions do you ask Dave about his goals and quality of life?
2. How important is having a sense of purpose?
3. Who would you involve in Dave’s care?
4. Do you react differently to Dave being a son than you would if the caregiver were a daughter?

Notes to Faculty: Key Learning Points

• Building partnerships with caregivers continues through grief and bereavement.
• While others may view the loss of the caregiving role as a relief, the caregiver may feel lost and depressed.
• It is important to recognize complicated grief and to treat it.
• Gender biases to caregiving and grief.

References

Case Authors
Jennifer Drost, D.O., M.P.H. and Barbara Palmisano, B.S.N., M.A.

Case Background

This case takes place in the hospital one or two days to anticipated discharge.  The case focuses on communication and teaching the patient and caregiver for effective discharge planning.

Learning Objectives

1. Discuss ways to approach discharge planning with the patient and caregiver who are overwhelmed with home care needs.
2. Describe the teach-back method for effectively training patients and caregivers to give specific treatments.
3. Identify ways to optimize patient and caregiver education and support with complicated discharge situations.

Relevant Milestones

Internal Medicine

• Patient Care #2
• System-Based Practice #1
• System-Based Practice #4
• Professionalism #1
• Professionalism #3
• Interpersonal and Communication Skills #1
• Interpersonal and Communication Skills #2

Family Medicine

• Patient Care #2
• Medical Knowledge #2
• System-Based Practice #1
• System-Based Practice #4
• Professionalism #3
• Communication #1
• Communication #2

Case Part I

Mr. Rankin, a 72-year-old African American male, is admitted for a foot ulcer and osteomyelitis. He has Type II Diabetes and a HbA1C of 11.3. He underwent a transmetatarsal amputation as he would not consent to a below-the-knee amputation. The surgeons were unable to debride all the infected bone. Mr. Rankin has a PICC line and will be going home on intravenous antibiotics. The surgical team spoke to Mr. Rankin about going home on IV antibiotics, Insulin and with a wound vac.

Mr. Rankin has lived with his brother in a two story home for the past ten years. Mr. Rankin feels he will need skilled help in the home as his brother is squeamish about medical care. His brother has expressed concerns that he cannot care for him and wants him to remain in the hospital until all the treatments are completed. A bit reluctantly, Mr. Rankin agrees to learn to give himself the insulin shots.

Discussion questions

1. What are the issues important to the discharge of Mr. Rankin?
2. What team members would you involve in this case and what are their respective roles?
3. How do you address Mr. Rankin’s concerns?
4. How do you approach Mr. Rankin’s brother’s concerns?

Case Part II

Two days before discharge Mr. Rankin is instructed to self-administer his insulin.  The day before discharge, Mr. Rankin’s brother comes to the hospital to observe the antibiotic injections which are to be given through the PICC line twice a day.  He is very nervous and concerned that he may give his brother another infection.  He asks if this is really necessary and why it can’t be given in a pill.  He seems overwhelmed when you discuss the wound vac and changing the dressings three times a week.  You assure him that a home health nurse will come to change the dressing. He asks “what will happen if there is a problem and the nurse is not there?  We live an hour away from the hospital?”

Discussion questions

1. How would you approach Mr. Rankin’s brother about his care needs?  How do you build trust and help alleviate his fears?
2. How do you explain the importance of the treatments and their long term implications for Mr. Rankin’s health?
3. What are some specific things you can do to help transition Mr. Rankin home?
4. What kind of follow-up will Mr. Rankin need?

References

Case Authors
Katherine H. Suddarth, M.D.; Ronald Jones, M.D.; Steven Radwany, M.D.; and Jennifer Drost, D.O., M.P.H.