130
Journal of Pain and Symptom Management
Vol. 50 No. 1 July 2015
Humanities: Art, Language, and Spirituality in Health Care Series Editors: Christina M. Puchalski, MD, MS, and Charles G. Sasser, MD
Still Enthusiastic After All These Years Charles F. von Gunten, MD, PhD, and Frank D. Ferris, MD OhioHealth, Columbus, Ohio, USA
We have been actively engaged in the practice of palliative medicine for 25 years. We also have been engaged in teaching, research, management, public speaking, and the politics of organized medicine. A common comment from fellows, colleagues, people who attend a lecture, or just from a committee member is, ‘‘I just love your enthusiasm.’’ The editors of this series asked us how we’ve sustained that enthusiasm for so longdparticularly since one of them said we are both ‘‘older than dirtdbut looking good in spite of it.’’ There are three sources that play an important role. The most reliable source of enthusiasm is the product of the direct care of patients and their families. You simply cannot make up the situations that present themselves. The pattern of engagement is the same. Genuine listening to the story. Suspending all other issues to be completely present in the moment. Asking questions that ‘‘deepen’’ the interview to extract all the associated details in the physical, emotional, practical, and spiritual domains. Mustering the courage to ‘‘lean in’’ to the pain rather than to try to fix it too soon. Then, to marvel as the best features of human beings become routinely displayed by our patients and their families: selfless love, compassion, long-suffering, patience, and courage. In the larger world, it seems we see portrayals of these only in novels, movies, plays, or poems. But in the practice of palliative medicine, it is remarkable how common those human virtues are. More remarkably, they are displayed by people who you would never predict, based on their other circumstances, they could possibly display. But they do, reliably, surprisingly, sometimes miraculously. It is a routine experience for each of us to just marvel at what we are privileged to witness by virtue of the
doctor-patient relationship. Long ago, we learned that the only barriers to intimacy in that relationship is on our sidedthat of the physician. Patients and their families will disclose anything as long as that relationship is cultivated with respectful curiosity. When other aspects of our professional lives become burdensome, going to see a patient and family is one of the most reliable sources of reenergizing that we can think of. A recent example is a woman in her late 50s with advanced diabetes and a failed kidney transplant. Her family physician was at a loss. She is bedbound and transported to hemodialysis three times each week by ambulance. She has a Grade IV sacral decubitus that causes her terrible pain, yet conventional systemic analgesics make her somnolent and delirious. She is dependent in all things. She lives with her mother in a 900-square-foot two-bedroom, one-bath house in a neighborhood once vibrant from people working in manufacturing, but now in decline after the closing of all the factories, as is typical in the ‘‘rust belt.’’ Sounds grim, doesn’t it? Yet, her mother, husband, daughter, and granddaughters provide her physical care in shifts. She sleeps in a hospital bed in the living room that takes up more than half the space. The patient and her family cherish each moment together; a few wry words of humor are enough to nourish the family bondsdthey wouldn’t have it any other way. A mixture of morphine and bupivacaine in the wound gel was the trick; modest amounts of hydromorphone and acetaminophen control the general aches and pains. They consider the home health nurse that comes to dress the wounds one of the familydhe plays with the children and the dogs when he comes. We couldn’t imagine coping with thisdbut they do. We think it’s
Address correspondence to: Charles F. von Gunten, MD, PhD, OhioHealth, 800 McConnell Drive, Columbus, OH 43215, USA. E-mail: [email protected] or [email protected]
Accepted for publication: March 11, 2015.
Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2015.03.010
Vol. 50 No. 1 July 2015
Still Enthusiastic After All These Years
heroic, they think it’s just how they want it, for as long as it can last. There’s no secret of her impending deathdbut each moment is precious; their daughter/mother/wife’s life is precious for what it isd not what she can do or be. She’s not enrolled in hospice care yet because of the dialysisdand when she does, it will be ‘‘short.’’ Nevertheless, even without all that support, they are thriving. A close second as a source of enthusiasm is helping a learner find the same joy as we in the practice of palliative medicine. For us, who have been doing this so long, most patient/family encounters fall into patterns. They say this, we say that, they say this, we say that . in the end, it turns out pretty much like we predict. But, to help a student, resident, fellow, or colleague learn how to set the stage, engage with patients and families in ways they have never tried before, or with situations they find frightening or overwhelmingdthat is magic. The analogy, we suppose, is much like the joy that parents get when they watch their children first roll over, walk, negotiate eating, dating, getting their first place to live on their own. When trainees come up and say something like, ‘‘Wow, that was cooldI want to do that again,’’ it is music. That warm glow of paternal pleasure burns brightly in our chests. Neither of us have our own children, nor do we feel the slightest twinge of desire to have our own. But, we haven’t the least sense of missing something. We get the pleasure of watching others develop skills, making them their own, then becoming independent, which characterize parental joy. Frank, in particular, has discovered that the joy of teaching has no worldwide boundaries. The admonitions about country and culture being barriers to palliative medicine notwithstanding, Frank has learned that the magic, the spark, the chemistry of teaching palliative medicine in the presence of real patients, no matter of what religion, language, or location, can reliably be struck anywhere in the world where there is a willing learner. For example, one of Frank’s first students was just a resident in internal medicine showing up for a ‘‘visiting lecture’’ that Frank was giving in his Middle Eastern country as part of a U.S. National Cancer Institute-funded outreach to the cancer center in which the resident was doing a required clinical rotation. He described himself as inspired, changed, and intrigued to pursue this new subspecialty about which he had formerly known nothing. He trained with Frank both in-country and in the U.S. One of his challenges was how to adjust to all the women in U.S. hospice and palliative care who hug men for any reason at alldto say hello, to say goodbye, to celebrate, to mourn, whatever. This is certainly not the usual approach in a traditional Muslim country. He now
131
leads his own group of students in his country who are changing the face of cancer care. Amazing, humbling, inspiring. He has overcome challenges we would find immobilizing. Why? Because they are theredand need to be overcome to reach the people who need the care. The third is seeing the need in the House of Medicinedthe broad practice of health care in the U.S. and around the world. There are so many features of palliative care that address what ails the health care system, the professional dissatisfaction with practice we see in physicians, nurses, social workers, chaplains, and others. We share the common conviction that, if carefully nurtured, they will be able to apply the principles of palliative care that should be just good health care without any other modifiers. Our heart just breaks when we hear hospitalists talking about ‘‘moving the meat’’ and wanting to get to their seven days off. It’s tragic when patients say they have never seen their doctor in the hospitaldshe’s too busy at the computer terminal directing care without the distraction of the real patient. That old line from the Broadway play, ‘‘Mame,’’ seems apt, ‘‘Life is a banquet yet most people are starving to death,’’ closely corresponding to our feelings in this regard. It seems only a little step, to us at least, for those whining and wailing about the state of health care to discover the same enthusiasm that we have for the workdwhether in primary care offices, intensive care units, or anywhere in between. As evidence, we can point to the achievement of subspecialty status in the U.S. cosponsored by 11 specialties because they know palliative medicine is, at its generalist level, a part of the professional bedrock of each specialty. Nowadays, talk of ‘‘the board exam’’ in hospice and palliative medicine is about as conventional as the board exam in internal medicine or surgery. Yet, not so long ago, we were told it would be ‘‘impossible’’ and we shouldn’t waste our time. We see it in other countries. Frank tells the story with tears of joy in his eyes when he describes 400 international colleagues at the European Association for Palliative Care Congress giving a colleague who he mentored in his leadership program a prolonged standing ovation. She evolved in 10 years from a timid, ‘‘it can’t be done’’ physician to the Chair of the first Department of Palliative Care in her former Soviet country. In 2014, he witnessed her supervising the first palliative medicine specialty examinations for more than 100 physicians in her university department. Lastly, although neither of us sees it as particularly remarkable, our colleagues want to know how two physicians working in the same field can live and work together. They wonder if our lives are ‘‘balanced,’’ as if that were the key to a happy life. Our decision to go
132
von Gunten and Ferris
down this path together 19 years ago was a decision not to lead a balanced life. The first committee meeting frequently starts at 5 AM and the last conference is at 10 PM. We work weekends and during our holidays. While others feel they must have partners that aren’t engaged in their work as a ‘‘break’’ or a balance, we find just the opposite. We need someone who is as passionately interested in this work as we are so there
Vol. 50 No. 1 July 2015
is no explaining, no justifying, no bargaining. We’re both ‘‘all in.’’ For, in the end, when it is our turn to make the end-of-life care journey, we don’t want to ever think that we didn’t give it our all. Someone wise once said the secret to a happy life is to spend yourself completely in the service of something you think is important. That sums it up for us. More accurately, we want to be able to say, ‘‘Wow, what a ride!’’
Journal of Pain and Symptom Management
Vol. 50 No. 1 July 2015
Humanities: Art, Language, and Spirituality in Health Care Series Editors: Christina M. Puchalski, MD, MS, and Charles G. Sasser, MD
Still Enthusiastic After All These Years Charles F. von Gunten, MD, PhD, and Frank D. Ferris, MD OhioHealth, Columbus, Ohio, USA
We have been actively engaged in the practice of palliative medicine for 25 years. We also have been engaged in teaching, research, management, public speaking, and the politics of organized medicine. A common comment from fellows, colleagues, people who attend a lecture, or just from a committee member is, ‘‘I just love your enthusiasm.’’ The editors of this series asked us how we’ve sustained that enthusiasm for so longdparticularly since one of them said we are both ‘‘older than dirtdbut looking good in spite of it.’’ There are three sources that play an important role. The most reliable source of enthusiasm is the product of the direct care of patients and their families. You simply cannot make up the situations that present themselves. The pattern of engagement is the same. Genuine listening to the story. Suspending all other issues to be completely present in the moment. Asking questions that ‘‘deepen’’ the interview to extract all the associated details in the physical, emotional, practical, and spiritual domains. Mustering the courage to ‘‘lean in’’ to the pain rather than to try to fix it too soon. Then, to marvel as the best features of human beings become routinely displayed by our patients and their families: selfless love, compassion, long-suffering, patience, and courage. In the larger world, it seems we see portrayals of these only in novels, movies, plays, or poems. But in the practice of palliative medicine, it is remarkable how common those human virtues are. More remarkably, they are displayed by people who you would never predict, based on their other circumstances, they could possibly display. But they do, reliably, surprisingly, sometimes miraculously. It is a routine experience for each of us to just marvel at what we are privileged to witness by virtue of the
doctor-patient relationship. Long ago, we learned that the only barriers to intimacy in that relationship is on our sidedthat of the physician. Patients and their families will disclose anything as long as that relationship is cultivated with respectful curiosity. When other aspects of our professional lives become burdensome, going to see a patient and family is one of the most reliable sources of reenergizing that we can think of. A recent example is a woman in her late 50s with advanced diabetes and a failed kidney transplant. Her family physician was at a loss. She is bedbound and transported to hemodialysis three times each week by ambulance. She has a Grade IV sacral decubitus that causes her terrible pain, yet conventional systemic analgesics make her somnolent and delirious. She is dependent in all things. She lives with her mother in a 900-square-foot two-bedroom, one-bath house in a neighborhood once vibrant from people working in manufacturing, but now in decline after the closing of all the factories, as is typical in the ‘‘rust belt.’’ Sounds grim, doesn’t it? Yet, her mother, husband, daughter, and granddaughters provide her physical care in shifts. She sleeps in a hospital bed in the living room that takes up more than half the space. The patient and her family cherish each moment together; a few wry words of humor are enough to nourish the family bondsdthey wouldn’t have it any other way. A mixture of morphine and bupivacaine in the wound gel was the trick; modest amounts of hydromorphone and acetaminophen control the general aches and pains. They consider the home health nurse that comes to dress the wounds one of the familydhe plays with the children and the dogs when he comes. We couldn’t imagine coping with thisdbut they do. We think it’s
Address correspondence to: Charles F. von Gunten, MD, PhD, OhioHealth, 800 McConnell Drive, Columbus, OH 43215, USA. E-mail: [email protected] or [email protected]
Accepted for publication: March 11, 2015.
Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2015.03.010
Vol. 50 No. 1 July 2015
Still Enthusiastic After All These Years
heroic, they think it’s just how they want it, for as long as it can last. There’s no secret of her impending deathdbut each moment is precious; their daughter/mother/wife’s life is precious for what it isd not what she can do or be. She’s not enrolled in hospice care yet because of the dialysisdand when she does, it will be ‘‘short.’’ Nevertheless, even without all that support, they are thriving. A close second as a source of enthusiasm is helping a learner find the same joy as we in the practice of palliative medicine. For us, who have been doing this so long, most patient/family encounters fall into patterns. They say this, we say that, they say this, we say that . in the end, it turns out pretty much like we predict. But, to help a student, resident, fellow, or colleague learn how to set the stage, engage with patients and families in ways they have never tried before, or with situations they find frightening or overwhelmingdthat is magic. The analogy, we suppose, is much like the joy that parents get when they watch their children first roll over, walk, negotiate eating, dating, getting their first place to live on their own. When trainees come up and say something like, ‘‘Wow, that was cooldI want to do that again,’’ it is music. That warm glow of paternal pleasure burns brightly in our chests. Neither of us have our own children, nor do we feel the slightest twinge of desire to have our own. But, we haven’t the least sense of missing something. We get the pleasure of watching others develop skills, making them their own, then becoming independent, which characterize parental joy. Frank, in particular, has discovered that the joy of teaching has no worldwide boundaries. The admonitions about country and culture being barriers to palliative medicine notwithstanding, Frank has learned that the magic, the spark, the chemistry of teaching palliative medicine in the presence of real patients, no matter of what religion, language, or location, can reliably be struck anywhere in the world where there is a willing learner. For example, one of Frank’s first students was just a resident in internal medicine showing up for a ‘‘visiting lecture’’ that Frank was giving in his Middle Eastern country as part of a U.S. National Cancer Institute-funded outreach to the cancer center in which the resident was doing a required clinical rotation. He described himself as inspired, changed, and intrigued to pursue this new subspecialty about which he had formerly known nothing. He trained with Frank both in-country and in the U.S. One of his challenges was how to adjust to all the women in U.S. hospice and palliative care who hug men for any reason at alldto say hello, to say goodbye, to celebrate, to mourn, whatever. This is certainly not the usual approach in a traditional Muslim country. He now
131
leads his own group of students in his country who are changing the face of cancer care. Amazing, humbling, inspiring. He has overcome challenges we would find immobilizing. Why? Because they are theredand need to be overcome to reach the people who need the care. The third is seeing the need in the House of Medicinedthe broad practice of health care in the U.S. and around the world. There are so many features of palliative care that address what ails the health care system, the professional dissatisfaction with practice we see in physicians, nurses, social workers, chaplains, and others. We share the common conviction that, if carefully nurtured, they will be able to apply the principles of palliative care that should be just good health care without any other modifiers. Our heart just breaks when we hear hospitalists talking about ‘‘moving the meat’’ and wanting to get to their seven days off. It’s tragic when patients say they have never seen their doctor in the hospitaldshe’s too busy at the computer terminal directing care without the distraction of the real patient. That old line from the Broadway play, ‘‘Mame,’’ seems apt, ‘‘Life is a banquet yet most people are starving to death,’’ closely corresponding to our feelings in this regard. It seems only a little step, to us at least, for those whining and wailing about the state of health care to discover the same enthusiasm that we have for the workdwhether in primary care offices, intensive care units, or anywhere in between. As evidence, we can point to the achievement of subspecialty status in the U.S. cosponsored by 11 specialties because they know palliative medicine is, at its generalist level, a part of the professional bedrock of each specialty. Nowadays, talk of ‘‘the board exam’’ in hospice and palliative medicine is about as conventional as the board exam in internal medicine or surgery. Yet, not so long ago, we were told it would be ‘‘impossible’’ and we shouldn’t waste our time. We see it in other countries. Frank tells the story with tears of joy in his eyes when he describes 400 international colleagues at the European Association for Palliative Care Congress giving a colleague who he mentored in his leadership program a prolonged standing ovation. She evolved in 10 years from a timid, ‘‘it can’t be done’’ physician to the Chair of the first Department of Palliative Care in her former Soviet country. In 2014, he witnessed her supervising the first palliative medicine specialty examinations for more than 100 physicians in her university department. Lastly, although neither of us sees it as particularly remarkable, our colleagues want to know how two physicians working in the same field can live and work together. They wonder if our lives are ‘‘balanced,’’ as if that were the key to a happy life. Our decision to go
132
von Gunten and Ferris
down this path together 19 years ago was a decision not to lead a balanced life. The first committee meeting frequently starts at 5 AM and the last conference is at 10 PM. We work weekends and during our holidays. While others feel they must have partners that aren’t engaged in their work as a ‘‘break’’ or a balance, we find just the opposite. We need someone who is as passionately interested in this work as we are so there
Vol. 50 No. 1 July 2015
is no explaining, no justifying, no bargaining. We’re both ‘‘all in.’’ For, in the end, when it is our turn to make the end-of-life care journey, we don’t want to ever think that we didn’t give it our all. Someone wise once said the secret to a happy life is to spend yourself completely in the service of something you think is important. That sums it up for us. More accurately, we want to be able to say, ‘‘Wow, what a ride!’’
