- Email: [email protected]
The kindness of strangers
MEDICINE, SCIENCE, AND SOCIETY
The Kindness of Strangers Esther Dajczman,N, MScA,Montreal, Quebec, Canada
aving spent ten years as a nurse in the field of pulmonary oncology, specifically in the roles of coordinator, patient care manager, and clinical resem'cher, I thought I had ml accurate sense of patient problems and needs. I worked in a multidisciplinary temn of highly trained professionals consisting of pneumologists, nurses, radiation oncologists and techificians, social workers, dietitians, and consulting specialists. Unlike m o s t pulmonary groups we decided to treat our own cancer patient population rather than r e f e n i n g them to oncology for care. It was our finn belief that the goals of patient care could best be realized through this venue where a patient received care on m a n y different levels (medical, nursing, psychological, social), gained quick and easy access to the hospital system, and received the benetits of nmltidisciplinary opinions. Parmnount to our success was the excellent relationship we shared with each other, the ability to ventilate concerns at group meetings, and the open door policy which prevailed. Nevertheless, at times each of us might have been abrupt with patients, caused them to endure what to them must have seemed like intolerable waiting periods, and occasionally put other professional interests ahead of the needs of individual patients. But it was not until my infant son was diagnosed with a rare malignancy that I truly m~derstood the complexities of the situation. I gained new comprehension of the feelings patients experienced, the intensity of the fear they had, and the vulnerability that c o m e s from depending on the kindness of strangers. With my experience my fears were rooted in reality. Although my knowledge of cancer therapeutics was solid, while awaiting the c o m m e n c e m e n t of my son's chemotherapy, I felt compelled to learn m o r e about both general pediatrics and pediatric oncology. I hoped this might serve to diminish his discomfort and help ltinl survive. In my struggle to gain control, ! realized that there was a n u m b e r of issues that becmne vitally important; specifically, our pediatric
H
From the Departmentof Medicine,Divisionof PulmonaryDiseases, Sir Mortimer B. Davis-JewishGeneralHospital, Montreal,Quebec,Canada. Requests for reprints should be addressed to Esther Dajczman N,MScA, Sir Mortimer B. Davis-JewishGeneralHospital,Departmentof Medicine, Divisionof PulmonaryDiseases,3755 COteSt. CatherineRd., Rm G224, Montreal,Quebec,Canada,H3T 1E2. Manuscript submitted November 20, 1995 and accepted in revised form May 15, 1996.
226
©1996 by Excerpta Medica, Inc. All ri~,hts reserved.
hematologist who walked softly and carried a big stick. This stick consisted of m a n y virtues, beginning with a high level of knowledge and experience, compassion, and an intense capacity to listen. These qualities were packaged within his non-threatening nature, and were a c c o m p a n i e d by a willingness to attend to p r o b l e m s in the m o s t inm~ediate yet unhurried way. His understanding of our inability to be patient while waiting for results, or concern for a s y m p t o m was vital to our coping with our son's perilous condition. I r e m e m b e r clearly his utter lack of annoyance w h e n I had paged him for results following a variety of tests, or merely to ask for reassurance. This message was transmitted by all the other attending hematologists. Whoever saw our son in the primary physician's absence k n e w his case well and also dealt with issues on an imnmdiate basis. Telephone calls were retun~ed within minutes. All other needs were m e t without delay. Their accessibility and willingness to a c c o m m o d a t e was of great importance in our ability to endure the pressures and physical hardships that existed. This a p p r o a c h was shared by the nursing personnel. We were assigned two primary nurses, one from the outpatient clinic, and one from the inpatient hematology floor. Although we were well k n o w n by the entire hematology nursing staff these individuals were m o s t involved in our case and t o o k a leadership role by enhancing our interaction with the system. They acted as liaisons, as advocates, as well as providers of therapeutic intervention, education, and support. Their colleagues who w o r k e d in concert never lacked zeal for caring for our child. This primary, yet temn-oriented approach, was very n m c h to our benefit. The honesty exhibited also enhanced our trust. For example, w h e n the nurse assigned to our son b e c a m e o v e r w h e l m e d due to a heavy patient load or p r o b l e m she transferred his care without delay to a colleague. This was explained in a caring m a n n e r and we were reassured that we were always in capable hands. F r o m our vantage point, the partnership b e t w e e n medicine and nursing was excellent. Although rare, when it does o c c u r it serves to better patient care. Different skills for different needs, added together, strengthens the foundation of delivery of patient care.
I k n o w the pressure for basic research that oncologists f e e l - - p r e s s u r e jeopardizing accessibility for 0002-9343/96/$15.00 PII S0002-9343(96)000101-R
PEDIATRIC ONCOLOGY CARE/DAJCZMAN patients. Clinicians m a y decrease clinic hours, be off service for lengthy periods, and be in the lab for a good deal of the time. This can result in fragmentation of care, decrease in trust, delayed attention to patient problems, thus prolonging suffering, and an increasing anxiety. Adequate access to health-care providers is primary to successful patient management. For our son the clinicians were clinicians first and foremost, and for the one individual w h o did function in a basic research capacity it s e e m e d to us that his clinical responsibilities and workload w e r e adjusted accordingly. It was as if clinical and research services w o r k e d in unison in order to maximize both end results, that is, patient care and the a d v a n c e m e n t of science. The revolution within the h e a l t h - c a r e s y s t e m s of b o t h C a n a d a and the United States h a s i m p o s e d
c o n s t r a i n t s on all professionals. The n e e d to be all things to all people, to do m o r e with less, to inc r e a s e efficiency while containing c o s t s h a s c a u s e d t r e m e n d o u s distraction f r o m the basic purp o s e s of p r o m o t i n g health and alleviating suffering. Moreover, the ideals of care t h a t are o f t e n t o u t e d but infrequently realized are t h r e a t e n e d b y the latest t h e o r e t i c a l v o g u e and c a m o u f l a g e d b y buzz w o r d s w e invent. Our m i s f o r t u n e h a s s h o w n us t h a t f e w p r o f e s sionals a t t a i n the e m p a t h y t h e y strive for. But h e r e it h a s h a p p e n e d . My child h a s the b e s t o f care. This h a s b e e n a c c o m p l i s h e d t h r o u g h the d e d i c a t i o n of learned, t a l e n t e d , kind a n d t o l e r a n t individuals w h o w o r k as a t e a m , and are a w a r e of the priorities. Would t h a t it c o u l d h a p p e n everywhere.
August 1996 The American Journal of Medicine® Volume 100
227
The Kindness of Strangers Esther Dajczman,N, MScA,Montreal, Quebec, Canada
aving spent ten years as a nurse in the field of pulmonary oncology, specifically in the roles of coordinator, patient care manager, and clinical resem'cher, I thought I had ml accurate sense of patient problems and needs. I worked in a multidisciplinary temn of highly trained professionals consisting of pneumologists, nurses, radiation oncologists and techificians, social workers, dietitians, and consulting specialists. Unlike m o s t pulmonary groups we decided to treat our own cancer patient population rather than r e f e n i n g them to oncology for care. It was our finn belief that the goals of patient care could best be realized through this venue where a patient received care on m a n y different levels (medical, nursing, psychological, social), gained quick and easy access to the hospital system, and received the benetits of nmltidisciplinary opinions. Parmnount to our success was the excellent relationship we shared with each other, the ability to ventilate concerns at group meetings, and the open door policy which prevailed. Nevertheless, at times each of us might have been abrupt with patients, caused them to endure what to them must have seemed like intolerable waiting periods, and occasionally put other professional interests ahead of the needs of individual patients. But it was not until my infant son was diagnosed with a rare malignancy that I truly m~derstood the complexities of the situation. I gained new comprehension of the feelings patients experienced, the intensity of the fear they had, and the vulnerability that c o m e s from depending on the kindness of strangers. With my experience my fears were rooted in reality. Although my knowledge of cancer therapeutics was solid, while awaiting the c o m m e n c e m e n t of my son's chemotherapy, I felt compelled to learn m o r e about both general pediatrics and pediatric oncology. I hoped this might serve to diminish his discomfort and help ltinl survive. In my struggle to gain control, ! realized that there was a n u m b e r of issues that becmne vitally important; specifically, our pediatric
H
From the Departmentof Medicine,Divisionof PulmonaryDiseases, Sir Mortimer B. Davis-JewishGeneralHospital, Montreal,Quebec,Canada. Requests for reprints should be addressed to Esther Dajczman N,MScA, Sir Mortimer B. Davis-JewishGeneralHospital,Departmentof Medicine, Divisionof PulmonaryDiseases,3755 COteSt. CatherineRd., Rm G224, Montreal,Quebec,Canada,H3T 1E2. Manuscript submitted November 20, 1995 and accepted in revised form May 15, 1996.
226
©1996 by Excerpta Medica, Inc. All ri~,hts reserved.
hematologist who walked softly and carried a big stick. This stick consisted of m a n y virtues, beginning with a high level of knowledge and experience, compassion, and an intense capacity to listen. These qualities were packaged within his non-threatening nature, and were a c c o m p a n i e d by a willingness to attend to p r o b l e m s in the m o s t inm~ediate yet unhurried way. His understanding of our inability to be patient while waiting for results, or concern for a s y m p t o m was vital to our coping with our son's perilous condition. I r e m e m b e r clearly his utter lack of annoyance w h e n I had paged him for results following a variety of tests, or merely to ask for reassurance. This message was transmitted by all the other attending hematologists. Whoever saw our son in the primary physician's absence k n e w his case well and also dealt with issues on an imnmdiate basis. Telephone calls were retun~ed within minutes. All other needs were m e t without delay. Their accessibility and willingness to a c c o m m o d a t e was of great importance in our ability to endure the pressures and physical hardships that existed. This a p p r o a c h was shared by the nursing personnel. We were assigned two primary nurses, one from the outpatient clinic, and one from the inpatient hematology floor. Although we were well k n o w n by the entire hematology nursing staff these individuals were m o s t involved in our case and t o o k a leadership role by enhancing our interaction with the system. They acted as liaisons, as advocates, as well as providers of therapeutic intervention, education, and support. Their colleagues who w o r k e d in concert never lacked zeal for caring for our child. This primary, yet temn-oriented approach, was very n m c h to our benefit. The honesty exhibited also enhanced our trust. For example, w h e n the nurse assigned to our son b e c a m e o v e r w h e l m e d due to a heavy patient load or p r o b l e m she transferred his care without delay to a colleague. This was explained in a caring m a n n e r and we were reassured that we were always in capable hands. F r o m our vantage point, the partnership b e t w e e n medicine and nursing was excellent. Although rare, when it does o c c u r it serves to better patient care. Different skills for different needs, added together, strengthens the foundation of delivery of patient care.
I k n o w the pressure for basic research that oncologists f e e l - - p r e s s u r e jeopardizing accessibility for 0002-9343/96/$15.00 PII S0002-9343(96)000101-R
PEDIATRIC ONCOLOGY CARE/DAJCZMAN patients. Clinicians m a y decrease clinic hours, be off service for lengthy periods, and be in the lab for a good deal of the time. This can result in fragmentation of care, decrease in trust, delayed attention to patient problems, thus prolonging suffering, and an increasing anxiety. Adequate access to health-care providers is primary to successful patient management. For our son the clinicians were clinicians first and foremost, and for the one individual w h o did function in a basic research capacity it s e e m e d to us that his clinical responsibilities and workload w e r e adjusted accordingly. It was as if clinical and research services w o r k e d in unison in order to maximize both end results, that is, patient care and the a d v a n c e m e n t of science. The revolution within the h e a l t h - c a r e s y s t e m s of b o t h C a n a d a and the United States h a s i m p o s e d
c o n s t r a i n t s on all professionals. The n e e d to be all things to all people, to do m o r e with less, to inc r e a s e efficiency while containing c o s t s h a s c a u s e d t r e m e n d o u s distraction f r o m the basic purp o s e s of p r o m o t i n g health and alleviating suffering. Moreover, the ideals of care t h a t are o f t e n t o u t e d but infrequently realized are t h r e a t e n e d b y the latest t h e o r e t i c a l v o g u e and c a m o u f l a g e d b y buzz w o r d s w e invent. Our m i s f o r t u n e h a s s h o w n us t h a t f e w p r o f e s sionals a t t a i n the e m p a t h y t h e y strive for. But h e r e it h a s h a p p e n e d . My child h a s the b e s t o f care. This h a s b e e n a c c o m p l i s h e d t h r o u g h the d e d i c a t i o n of learned, t a l e n t e d , kind a n d t o l e r a n t individuals w h o w o r k as a t e a m , and are a w a r e of the priorities. Would t h a t it c o u l d h a p p e n everywhere.
August 1996 The American Journal of Medicine® Volume 100
227