T H E
S
C I E N C E
O F
L I F E S T Y L E
C H A N G E
Editor s Notes Should We Have Extended His Life With Medical Care or Helped Him Have a Good Death?
I am a baby boomer. I have reached the age where people close to me, young and old, have started to die. Baby boomers are being forced to deal with issues that used to be abstract, issues that our parents had to deal with. Now we are the parents. Uncle Stu luas the seventh family member or close friend I have lost in the past 7 years, the fifth in the last 3 years. Should our focus be to extend our loved ones' lives through medical care or to help them have a good death?
It was Friday night, "date night." Leslie (my wife) and I were in Ann Arbor at the Michigan-Wisconsin hockey game, just four rows up to the left of the goal, the spot where players mash their faces into the glass when the defense checks them on the boards. Michigan tipset Wisconsin 3-2. I had my cell phone in my pocket, but did not hear any of the three calls from the nursing home until the end of the game. The first message said "Please call as soon as possible; Uncle Stu is not eating or drinking and we are concerned about his sodium levels." The second message, 30 minutes later said "Please call as soon as possible; we started an IV." The third message said: "We are taking Uncle Stu to the emergency room for evaluation. I hope you agree that we made the right decision." My Uncle Stu was born in 1923 in Shanghai, China, where his father was a medical missionary who built the first Western hospital in China; he served in World War II, where he was awarded a Bronze Star and Purple Heart; he later earned a graduate degree in engineering, had a 40-year career as a civil and environmental engineer, and explored the Great Lakes in his sailboat whenever he got the chance. I have been responsible for his affairs since 2007, when he was diagnosed with moderate dementia but was still able to walk more than a mile a day, smile most of the time, enjoy time with family, and entertain us with stories from his life that he AinJ Health Pmmot 2014;28l5¡:v-m. DOI: W.4278/ajhp.28.5.v ) 20J4 by A?mnicfin Journal oj Health I'm
American Journal of Health Promotion
told over and over and over again because he did not remember he had already shared them many times. We drove to the hospital in Ohio the next morning and met with the staff in the intensive care step-down unit. They had already performed a series of cardiac tests and imaging exams and were filling Uncle Stu with fluids and antibiotics to treat pneumonia and dehydration. Monitors were beeping and flashing, and Uncle Stu lay in the bed, unresponsive, but with tension in his face. My responsibility as medical power of attorney was to decide what to do next. We met with his doctor from the nursing home. She explained the treatment plan, which might cure the pneumonia in a week or so, btit he also might not survive given his current condition. "Is that what Uncle Stu would want?" I wondered. Several times in the last few years, he had asked, "Why am I still here?" not in regret, but reflecting on how much his physical and cognitive functioning had deteriorated. He had a "do not resuscitate" order in his file, but resuscitation was not an issue now. This was his fifth or sixth bout with pneumonia in the last 5 years. He lost more strength and functioning after each bout. His dementia had progressed to the point that he could not walk or talk and had to be fed, clothed, and groomed by the remarkable caregivers in his nursing home. I looked at Leslie, then the doctor, and told her we would like to move Uncle Stu back to the nursing home as soon as possible. She agreed that was a good idea. When she said we had the option of continuing the treatment plan at the nursing home, I wondered out loud where that would leave Uncle Stu. In the best-case scenario, he might recover to his previous state.. .in a wheelchair, imable to talk or care for himself, unconscious most of the time. The doctor was masterful; in the most gentle way, she said, "What is it they say about pneumonia.. .an old man's best friend." I looked at Leslie, she nodded in agreement, we both teared up, and I said, "I don't think we should continue the treatment." The doctor said she agreed that was the best course of action. A few hours later. Uncle Stu was in his own bed in the nursing home, receiving care from a team of the kindest, most professional people I have ever encountered, people who had cared for him for years. He was home. These professionals have been through this stage of life with many of their residents. They know exactly what to do for the
May/June 2014, Vol. 28, No. 5
residents and for the families. Uncle Stu looked at peace as soon as he got to the nursing home, and his blood pressure dropped from high to normal within 20 minutes. The staff instituted their "comfort care" protocol, which entails offering as much soft food and thick liquid with a spoon as the patient desires, and providing Tylenol and morphine as needed to eliminate pain. Uncle Stu showed no signs of pain or discomfort during the next three days and passed away Tuesday morning with family who loved him in the room. I am a baby boomer. Like other baby boomers, I have reached the age where people close to me, young and old, have started to die. Baby boomers are being forced to deal with issues that used to be abstract, issues that our parents had to deal with. Now we are the parents. Uncle Stu was the seventh family member or close friend I have lost in the past 7 years, the fifth in the last 3 years. I have served as medical power of attorney agent for three of them. When my younger brother was dying three years ago, a good friend who does hospice work told me my brother was giving me a great gift because he was letting me observe the dying process before I had to go through it myself. I did not want to hear that. I did not understand it. It did not feel like a gift. Another friend told me that my job was to help my brother have a good death. That sounded rather bizarre. How could death be good? I now understand what both of them meant. They were both right. I now understand that I did receive a great gift from each of them. Being able to care for them during this time was a sacred privilege. I hope I can retain everything I learned from each of them during this process. All of the seven had a good death, with no pain and with family in the room when they passed. How are we supposed to learn about death? I earned a graduate degree in hospital management and worked as a manager in hospitals for more than a decade, but I never learned about death tintil I had to go through it with family members. The main thing I learned in school was how great medical care can keep people alive despite great odds. Now I ask why. Despite being able to die peacefully, in a comfortable familiar place, all seven experienced the normal reaction of the medical system near the end of life.. .intensive care. The cost of Uncle Stu's 14-hour stay was $12,014.65. Medicare covered all but $63.40. The bill for one family member was more than $500,000. The others were in between. Did any of them gain anything from the medical care they received at
American Journal of Health Promotion
the end of life? Maybe. In one case, we thought recovery was possible, although remotely so. In each case, life was extended by a few days, weeks, or months. This gave family members an opportunity to come and say their goodbyes. It also gave each of die patients time to get ready to die. It still amazes me that each of them seemed ready to let go.. .even when other family members were not. All seven were pain free in their final days. That is important! But it can also be achieved in an outpatient hospice setting for a fraction of the cost. None of the seven ever went home, or lived an independent life after their intensive care episodes. Financial cost is also an issue, even though "someone else" usually pays for it. In 2011, Medicare spent an estimated $170 billion, 28% of its total budget, on care for people in the last 6 months of life.' Medicare is projected to go bankrupt by 2026." It is also likely that our nation will implode financially in the next half century if we do not control medical spending."^ What should we do for those we love at the end of life? What do we want for ourselves at the end of life?
Michael P. O'DonneU, MBA, MPH, PhD Editor in Chief, American Journal of Health Promotion Director, Health Management Research Center, and Clinical Professor, School of Kinesiology, University of Michigan References 1. Pasternak S. End-of-life care constitutes third rail of US health care policy debate. The Medicare NewsGroup. June 3, 2013. Available at: http://www.medicarenewsgroup.com/context/ understanding-medicare-blog/understanding-medicare-blog/SOlS/ 06/03/end-of-life-care-constitutes-third-rail-of-u.s. -health-care-policy-debate. Acce,ssed March 12, 2014. 2. Centers for Medicare and Medicaid Service. 2013 annual report of the boards of trustees of the federal hospital insurance and federal supplementary medical insurance trust funds. Available at: http:// www.cms.gov/Research-S tatistics-Data-and-Systems/ Statistics-Trends-and-Reports/ReporLsTaistFunds/Downloads/ TR2013.pdf. Accessed March 14, 2014. 3. Congressional Budget Office. The 2013 long-term budget outlook. Available at: http://www.cbo.gov/publication/44521. Accessed March 14, 2014.
May/June 2014, Vol. 28, No. 5
Copyright of American Journal of Health Promotion is the property of American Journal of Health Promotion and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
S
C I E N C E
O F
L I F E S T Y L E
C H A N G E
Editor s Notes Should We Have Extended His Life With Medical Care or Helped Him Have a Good Death?
I am a baby boomer. I have reached the age where people close to me, young and old, have started to die. Baby boomers are being forced to deal with issues that used to be abstract, issues that our parents had to deal with. Now we are the parents. Uncle Stu luas the seventh family member or close friend I have lost in the past 7 years, the fifth in the last 3 years. Should our focus be to extend our loved ones' lives through medical care or to help them have a good death?
It was Friday night, "date night." Leslie (my wife) and I were in Ann Arbor at the Michigan-Wisconsin hockey game, just four rows up to the left of the goal, the spot where players mash their faces into the glass when the defense checks them on the boards. Michigan tipset Wisconsin 3-2. I had my cell phone in my pocket, but did not hear any of the three calls from the nursing home until the end of the game. The first message said "Please call as soon as possible; Uncle Stu is not eating or drinking and we are concerned about his sodium levels." The second message, 30 minutes later said "Please call as soon as possible; we started an IV." The third message said: "We are taking Uncle Stu to the emergency room for evaluation. I hope you agree that we made the right decision." My Uncle Stu was born in 1923 in Shanghai, China, where his father was a medical missionary who built the first Western hospital in China; he served in World War II, where he was awarded a Bronze Star and Purple Heart; he later earned a graduate degree in engineering, had a 40-year career as a civil and environmental engineer, and explored the Great Lakes in his sailboat whenever he got the chance. I have been responsible for his affairs since 2007, when he was diagnosed with moderate dementia but was still able to walk more than a mile a day, smile most of the time, enjoy time with family, and entertain us with stories from his life that he AinJ Health Pmmot 2014;28l5¡:v-m. DOI: W.4278/ajhp.28.5.v ) 20J4 by A?mnicfin Journal oj Health I'm
American Journal of Health Promotion
told over and over and over again because he did not remember he had already shared them many times. We drove to the hospital in Ohio the next morning and met with the staff in the intensive care step-down unit. They had already performed a series of cardiac tests and imaging exams and were filling Uncle Stu with fluids and antibiotics to treat pneumonia and dehydration. Monitors were beeping and flashing, and Uncle Stu lay in the bed, unresponsive, but with tension in his face. My responsibility as medical power of attorney was to decide what to do next. We met with his doctor from the nursing home. She explained the treatment plan, which might cure the pneumonia in a week or so, btit he also might not survive given his current condition. "Is that what Uncle Stu would want?" I wondered. Several times in the last few years, he had asked, "Why am I still here?" not in regret, but reflecting on how much his physical and cognitive functioning had deteriorated. He had a "do not resuscitate" order in his file, but resuscitation was not an issue now. This was his fifth or sixth bout with pneumonia in the last 5 years. He lost more strength and functioning after each bout. His dementia had progressed to the point that he could not walk or talk and had to be fed, clothed, and groomed by the remarkable caregivers in his nursing home. I looked at Leslie, then the doctor, and told her we would like to move Uncle Stu back to the nursing home as soon as possible. She agreed that was a good idea. When she said we had the option of continuing the treatment plan at the nursing home, I wondered out loud where that would leave Uncle Stu. In the best-case scenario, he might recover to his previous state.. .in a wheelchair, imable to talk or care for himself, unconscious most of the time. The doctor was masterful; in the most gentle way, she said, "What is it they say about pneumonia.. .an old man's best friend." I looked at Leslie, she nodded in agreement, we both teared up, and I said, "I don't think we should continue the treatment." The doctor said she agreed that was the best course of action. A few hours later. Uncle Stu was in his own bed in the nursing home, receiving care from a team of the kindest, most professional people I have ever encountered, people who had cared for him for years. He was home. These professionals have been through this stage of life with many of their residents. They know exactly what to do for the
May/June 2014, Vol. 28, No. 5
residents and for the families. Uncle Stu looked at peace as soon as he got to the nursing home, and his blood pressure dropped from high to normal within 20 minutes. The staff instituted their "comfort care" protocol, which entails offering as much soft food and thick liquid with a spoon as the patient desires, and providing Tylenol and morphine as needed to eliminate pain. Uncle Stu showed no signs of pain or discomfort during the next three days and passed away Tuesday morning with family who loved him in the room. I am a baby boomer. Like other baby boomers, I have reached the age where people close to me, young and old, have started to die. Baby boomers are being forced to deal with issues that used to be abstract, issues that our parents had to deal with. Now we are the parents. Uncle Stu was the seventh family member or close friend I have lost in the past 7 years, the fifth in the last 3 years. I have served as medical power of attorney agent for three of them. When my younger brother was dying three years ago, a good friend who does hospice work told me my brother was giving me a great gift because he was letting me observe the dying process before I had to go through it myself. I did not want to hear that. I did not understand it. It did not feel like a gift. Another friend told me that my job was to help my brother have a good death. That sounded rather bizarre. How could death be good? I now understand what both of them meant. They were both right. I now understand that I did receive a great gift from each of them. Being able to care for them during this time was a sacred privilege. I hope I can retain everything I learned from each of them during this process. All of the seven had a good death, with no pain and with family in the room when they passed. How are we supposed to learn about death? I earned a graduate degree in hospital management and worked as a manager in hospitals for more than a decade, but I never learned about death tintil I had to go through it with family members. The main thing I learned in school was how great medical care can keep people alive despite great odds. Now I ask why. Despite being able to die peacefully, in a comfortable familiar place, all seven experienced the normal reaction of the medical system near the end of life.. .intensive care. The cost of Uncle Stu's 14-hour stay was $12,014.65. Medicare covered all but $63.40. The bill for one family member was more than $500,000. The others were in between. Did any of them gain anything from the medical care they received at
American Journal of Health Promotion
the end of life? Maybe. In one case, we thought recovery was possible, although remotely so. In each case, life was extended by a few days, weeks, or months. This gave family members an opportunity to come and say their goodbyes. It also gave each of die patients time to get ready to die. It still amazes me that each of them seemed ready to let go.. .even when other family members were not. All seven were pain free in their final days. That is important! But it can also be achieved in an outpatient hospice setting for a fraction of the cost. None of the seven ever went home, or lived an independent life after their intensive care episodes. Financial cost is also an issue, even though "someone else" usually pays for it. In 2011, Medicare spent an estimated $170 billion, 28% of its total budget, on care for people in the last 6 months of life.' Medicare is projected to go bankrupt by 2026." It is also likely that our nation will implode financially in the next half century if we do not control medical spending."^ What should we do for those we love at the end of life? What do we want for ourselves at the end of life?
Michael P. O'DonneU, MBA, MPH, PhD Editor in Chief, American Journal of Health Promotion Director, Health Management Research Center, and Clinical Professor, School of Kinesiology, University of Michigan References 1. Pasternak S. End-of-life care constitutes third rail of US health care policy debate. The Medicare NewsGroup. June 3, 2013. Available at: http://www.medicarenewsgroup.com/context/ understanding-medicare-blog/understanding-medicare-blog/SOlS/ 06/03/end-of-life-care-constitutes-third-rail-of-u.s. -health-care-policy-debate. Acce,ssed March 12, 2014. 2. Centers for Medicare and Medicaid Service. 2013 annual report of the boards of trustees of the federal hospital insurance and federal supplementary medical insurance trust funds. Available at: http:// www.cms.gov/Research-S tatistics-Data-and-Systems/ Statistics-Trends-and-Reports/ReporLsTaistFunds/Downloads/ TR2013.pdf. Accessed March 14, 2014. 3. Congressional Budget Office. The 2013 long-term budget outlook. Available at: http://www.cbo.gov/publication/44521. Accessed March 14, 2014.
May/June 2014, Vol. 28, No. 5
Copyright of American Journal of Health Promotion is the property of American Journal of Health Promotion and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
