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CHICAGO, Illinois /
Journal of American Medical Association / January 6, 2010
Clinical Crossroads
By Tom Delbanco, MD
CASE PRESENTATION
Mrs H is an 86-year-old retired health care professional and grandmother with severe cardiac cachexia. She is considering the best way to have her life end.
Mrs H has Medicare and supplemental insurance, receives Social Security payments, and has a few other funds providing modest support. She lives by herself on the second floor of a walk-up apartment building and has a personal care attendant to help during the day, paid for by her daughter, who has recently lost her job and may not be able to provide ongoing financial help.
Mrs H walks primarily with a walker and is dyspneic with minimal exertion (New York Heart Association class IIIB). She leaves her apartment rarely, and always with assistance. She is able to bathe, clothe, and toilet herself independently but requires assistance with meal preparation and other instrumental activities of daily living. Her mobility is severely limited by arthritic joints and she has difficulty with balance. She has fallen several times, requiring hospitalization for minor injuries on numerous occasions.
Mrs H has had insulin-dependent diabetes since the 1980s. She experienced a myocardial infarction in 1996 and subsequently underwent placement of a stent. Following multiple percutaneous coronary interventions, intermittent episodes of atrial fibrillation, and implantation of a biventricular/implantable cardioverter-defibrillator cardiac pacemaker, she has severe ischemic cardiomyopathy, with a left ventricular ejection fraction of 15%.
In addition, Mrs H has a long and complicated medical history, including hypothyroidism, breast cancer, depression, allergic rhinitis, degenerative joint disease, pneumonia complicated by empyema, removal of a ruptured appendix, cholecystectomy, uterine suspension, gastroesophageal reflux, diabetic neuropathy, diabetic foot ulcers, orthostatic hypotension, anemia, spinal stenosis, and recurrent hyperkalemia. Her depression has been treated by her psychiatrist for many years with therapy and medications, currently fluoxetine. When she was no longer able to travel to his office, he made home visits and talked with her on the telephone. He did not believe that her wish for suicide was related to depression but rather to her concerns about dependence and being a burden. At the hospital where she receives ongoing primary and specialty care, during the past 17 years she has had 148 outpatient general medicine visits, 35 cardiology visits, 155 visits to other specialists, and 25 hospitalizations.
On recent physical examination, Mrs H looked quite well but was pale and bruised after hospitalization for a fall. She was unsteady while walking and used a walker. Her blood pressure was 110/70 mm Hg, heart rate was 50/min (paced), and respiratory rate was 16/min. Her jugular venous pressure was approximately 7 cm. Her lungs were clear, and cardiac examination revealed a soft, holosystolic murmur at the left border. She did not exhibit hepatojugular reflux but had 1-2+ pitting edema of the lower extremities. Neurological evaluation was consistent with peripheral neuropathy, but there were no lateralizing signs. Her feet did not reveal ulceration.
Recent laboratory findings included creatinine levels ranging from 1.2 to 2.4 mg/dL and serum urea nitrogen levels ranging from 27 to 63 mg/dL, depending on her level of hydration. Serum sodium levels have been generally normal, and she has not had proteinuria. Her hematocrit was 28% to 32%, and her glucose levels ranged from 160 to 220 mg/dL, with intermittent hypoglycemic episodes. Her hemoglobin A1c hovers around 8%. Other laboratory test results are unremarkable.
Mrs H's medications include insulin, acetaminophen-codeine, fluticasone, furosemide, trimethoprim-sulfamethoxazole (for urinary tract prophylaxis after multiple infections), fexofenadine, clopidogrel, levothyroxine, omeprazole, fluoxetine, prednisone, simvastatin, nitroglycerin, aspirin, and a multivitamin.
Mrs H is frustrated by the decline of her health and worries frequently about the inevitability of continued deterioration. Considering herself fortunate for having lived a full and "exciting" life, she is considering suicide rather than facing a life of dependency, indicating that she would not want to continue a life filled with suffering. She does not want resuscitation attempts or intubation, which her primary care physician has documented; her daughter serves as her proxy. Her primary care physician is suggesting hospice care.
MRS H: HER VIEW
I think the thing that I miss most in the quality of my life is not being able to interact with my surroundings. When I go out on the street, I cannot stop thinking about where I’m stepping. I can't look at the beautiful flowers or see what somebody across the street is doing.
I’m still doing things and I still enjoy life, but I’m taking so many medicines, and each year I’m a little worse. I’m very afraid that I’m going to be incapable of doing anything—I had a grandfather who used to say "Why doesn't God take me?" Well, my feeling is "Why doesn't my heart stop beating because it's in such bad shape?" I used to think when I got depressed that I could go and throw myself off the top of the building. Now I couldn't even get there.
I talked with my doctor about the fact that I was interested in the end of life and that I was thinking about discontinuing all my food and liquids and all my medicines, including my insulin. She told me that if I stopped taking insulin I might have a very high blood glucose. My experience with high blood glucose was that I got very, very thirsty. And when I thought about it, I thought, "Well, that means I would die of thirst." I realized that didn't appeal to me.
"Suicide" has so many bad things connected with it. I think "ending your life" sounds like you are not doing something disgraceful or that would be hard for your children to take. I discussed suicide with my daughter, and she was very, very upset. I think I would have to convince her that it was for me. But I wouldn't do it unless she came around to it. Hospice could help me by talking to me and letting me know if my plan sounds sensible.
AT THE CROSSROADS: QUESTIONS FOR READERS
What are Mrs H's prognosis and her clinical options? What issues are most important to patients and families facing the end of life? What is hospice and what does it offer? How may hospice help Mrs H address the timing and mechanism of the end of her life? How do patients and families make decisions about enrolling in hospice? What are the outcomes (eg, patient, family, costs/utilization) of hospice care? What do you recommend for Mrs H and her family?
JAMA. 2010;303(1):(doi:10.1001/jama.2009.2015)
The patient described and interviewed in this paper faces a crossroads in her medical care. Consider her medical history and perspective, expressed in her own words, and review the questions posed. How would you approach this crossroads? Using evidence from the literature as well as your own experience, respond by using the link to the right.
Respond to this article
Responses will be selected for posting online based on their timeliness and quality, including use of the available evidence, weighing the issues, and addressing the patient's concerns. The discussion of this Clinical Crossroads case, authored by Jean S. Kutner, MD, MSPH, will be published in the January 27, 2010, issue of JAMA; responses must be received by January 24, 2010, to be considered for online posting.
AUTHOR INFORMATION
The authors thank the patient for sharing her story and for providing permission to publish it.
Author Affiliations: Dr Delbanco is Richard and Florence Koplow–James Tullis Professor of General Medicine and Primary Care, Harvard Medical School, Division of General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts. [
rc]
© 2010 American Medical Association
Clinical Crossroads
By Tom Delbanco, MD
CASE PRESENTATION
Mrs H is an 86-year-old retired health care professional and grandmother with severe cardiac cachexia. She is considering the best way to have her life end.
Mrs H has Medicare and supplemental insurance, receives Social Security payments, and has a few other funds providing modest support. She lives by herself on the second floor of a walk-up apartment building and has a personal care attendant to help during the day, paid for by her daughter, who has recently lost her job and may not be able to provide ongoing financial help.
Mrs H walks primarily with a walker and is dyspneic with minimal exertion (New York Heart Association class IIIB). She leaves her apartment rarely, and always with assistance. She is able to bathe, clothe, and toilet herself independently but requires assistance with meal preparation and other instrumental activities of daily living. Her mobility is severely limited by arthritic joints and she has difficulty with balance. She has fallen several times, requiring hospitalization for minor injuries on numerous occasions.
Mrs H has had insulin-dependent diabetes since the 1980s. She experienced a myocardial infarction in 1996 and subsequently underwent placement of a stent. Following multiple percutaneous coronary interventions, intermittent episodes of atrial fibrillation, and implantation of a biventricular/implantable cardioverter-defibrillator cardiac pacemaker, she has severe ischemic cardiomyopathy, with a left ventricular ejection fraction of 15%.
In addition, Mrs H has a long and complicated medical history, including hypothyroidism, breast cancer, depression, allergic rhinitis, degenerative joint disease, pneumonia complicated by empyema, removal of a ruptured appendix, cholecystectomy, uterine suspension, gastroesophageal reflux, diabetic neuropathy, diabetic foot ulcers, orthostatic hypotension, anemia, spinal stenosis, and recurrent hyperkalemia. Her depression has been treated by her psychiatrist for many years with therapy and medications, currently fluoxetine. When she was no longer able to travel to his office, he made home visits and talked with her on the telephone. He did not believe that her wish for suicide was related to depression but rather to her concerns about dependence and being a burden. At the hospital where she receives ongoing primary and specialty care, during the past 17 years she has had 148 outpatient general medicine visits, 35 cardiology visits, 155 visits to other specialists, and 25 hospitalizations.
On recent physical examination, Mrs H looked quite well but was pale and bruised after hospitalization for a fall. She was unsteady while walking and used a walker. Her blood pressure was 110/70 mm Hg, heart rate was 50/min (paced), and respiratory rate was 16/min. Her jugular venous pressure was approximately 7 cm. Her lungs were clear, and cardiac examination revealed a soft, holosystolic murmur at the left border. She did not exhibit hepatojugular reflux but had 1-2+ pitting edema of the lower extremities. Neurological evaluation was consistent with peripheral neuropathy, but there were no lateralizing signs. Her feet did not reveal ulceration.
Recent laboratory findings included creatinine levels ranging from 1.2 to 2.4 mg/dL and serum urea nitrogen levels ranging from 27 to 63 mg/dL, depending on her level of hydration. Serum sodium levels have been generally normal, and she has not had proteinuria. Her hematocrit was 28% to 32%, and her glucose levels ranged from 160 to 220 mg/dL, with intermittent hypoglycemic episodes. Her hemoglobin A1c hovers around 8%. Other laboratory test results are unremarkable.
Mrs H's medications include insulin, acetaminophen-codeine, fluticasone, furosemide, trimethoprim-sulfamethoxazole (for urinary tract prophylaxis after multiple infections), fexofenadine, clopidogrel, levothyroxine, omeprazole, fluoxetine, prednisone, simvastatin, nitroglycerin, aspirin, and a multivitamin.
Mrs H is frustrated by the decline of her health and worries frequently about the inevitability of continued deterioration. Considering herself fortunate for having lived a full and "exciting" life, she is considering suicide rather than facing a life of dependency, indicating that she would not want to continue a life filled with suffering. She does not want resuscitation attempts or intubation, which her primary care physician has documented; her daughter serves as her proxy. Her primary care physician is suggesting hospice care.
MRS H: HER VIEW
I think the thing that I miss most in the quality of my life is not being able to interact with my surroundings. When I go out on the street, I cannot stop thinking about where I’m stepping. I can't look at the beautiful flowers or see what somebody across the street is doing.
I’m still doing things and I still enjoy life, but I’m taking so many medicines, and each year I’m a little worse. I’m very afraid that I’m going to be incapable of doing anything—I had a grandfather who used to say "Why doesn't God take me?" Well, my feeling is "Why doesn't my heart stop beating because it's in such bad shape?" I used to think when I got depressed that I could go and throw myself off the top of the building. Now I couldn't even get there.
I talked with my doctor about the fact that I was interested in the end of life and that I was thinking about discontinuing all my food and liquids and all my medicines, including my insulin. She told me that if I stopped taking insulin I might have a very high blood glucose. My experience with high blood glucose was that I got very, very thirsty. And when I thought about it, I thought, "Well, that means I would die of thirst." I realized that didn't appeal to me.
"Suicide" has so many bad things connected with it. I think "ending your life" sounds like you are not doing something disgraceful or that would be hard for your children to take. I discussed suicide with my daughter, and she was very, very upset. I think I would have to convince her that it was for me. But I wouldn't do it unless she came around to it. Hospice could help me by talking to me and letting me know if my plan sounds sensible.
AT THE CROSSROADS: QUESTIONS FOR READERS
What are Mrs H's prognosis and her clinical options? What issues are most important to patients and families facing the end of life? What is hospice and what does it offer? How may hospice help Mrs H address the timing and mechanism of the end of her life? How do patients and families make decisions about enrolling in hospice? What are the outcomes (eg, patient, family, costs/utilization) of hospice care? What do you recommend for Mrs H and her family?
JAMA. 2010;303(1):(doi:10.1001/jama.2009.2015)
The patient described and interviewed in this paper faces a crossroads in her medical care. Consider her medical history and perspective, expressed in her own words, and review the questions posed. How would you approach this crossroads? Using evidence from the literature as well as your own experience, respond by using the link to the right.
Respond to this article
Responses will be selected for posting online based on their timeliness and quality, including use of the available evidence, weighing the issues, and addressing the patient's concerns. The discussion of this Clinical Crossroads case, authored by Jean S. Kutner, MD, MSPH, will be published in the January 27, 2010, issue of JAMA; responses must be received by January 24, 2010, to be considered for online posting.
AUTHOR INFORMATION
The authors thank the patient for sharing her story and for providing permission to publish it.
Author Affiliations: Dr Delbanco is Richard and Florence Koplow–James Tullis Professor of General Medicine and Primary Care, Harvard Medical School, Division of General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts. [rc]
© 2010 American Medical Association
