- Email: [email protected]
Whose decision is it? The microstructure of medical decision making
ARTICLE IN PRESS
www.elsevier.de/zefq Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) 102 (2008) 423–425
Schwerpunkt
Whose decision is it? The microstructure of medical decision making Simon N. Whitney William W. O’Donnell, MD, and Regina O’Donnell Chair in Family Medicine, Department of Family and Community Medicine, Houston Center for Education and Research on Therapeutics, Baylor College of Medicine, 3701 Kirby Drive, Suite 600, Houston, TX 77098
Summary Medical decision making is sometimes viewed as a relatively simple process in which a decision may be made by the patient, by the physician, or by both patient and physician working together. This two-dimensional portrayal eclipses the important role that others, such as other professionals, family, and friends, may play in the process; as an example of this phenomenon, we trace the evolution of a decision of a teenager with
cancer who is contemplating discontinuing chemotherapy. This example also shows how a decision can usefully be understood as consisting of a number of identifiable substeps – what we call the ‘‘microstructure’’ of the decision. These steps show how the physician can play an important role without usurping the patient’s rightful decisional authority.
Key words: decision making, decision theory, informed consent, treatment refusal, patient participation, physician-patient relations
Wessen Entscheidung ist es? Die Mikrostruktur der medizinischen Entscheidungsfindung Zusammenfassung Gelegentlich wird die medizinische Entscheidungsfindung als ein vergleichsweise einfacher Prozess aufgefasst, in dessen Verlauf der Patient, der Arzt oder Patient und Arzt gemeinsam eine Entscheidung treffen. Diese zweidimensionale Sichtweise verdeckt die wichtige Rolle, die Dritte – beispielsweise andere A¨rzte, Angeho¨rige und Freunde – in diesem Prozess spielen ko¨nnen; als Beispiel fu¨r dieses Pha¨nomen werden wir die Entwicklung der Entscheidung einer an Krebs erkrankten Jugendlichen
nachzeichnen, die mit dem Gedanken spielt, ihre Chemotherapie abzubrechen. Dieses Beispiel verdeutlicht auch, dass eine solche Entscheidung sinnvollerweise auch als aus verschiedenen Teilschritten bestehend verstanden werden kann – was wir als die Mikrostruktur’’ der Entscheidung ’’ bezeichnen. Diese Schritte zeigen, wie der Arzt eine wichtige Rolle u¨bernehmen kann, ohne sich die rechtma¨ßige Entscheidungsautorita¨t des Patienten anzueignen.
Schlu¨sselwo¨rter: Entscheidungsfindung, Theorie der Entscheidung, informierte Zustimmung (informed consent), Therapieverweigerung Patientenbeteiligung, Arzt-Patient-Beziehung
Corresponding author. Simon N. Whitney, MD, JD, Department of Family and Community Medicine, Houston Center for Education and Research on Therapeutics,
Baylor College of Medicine, 3701 Kirby Drive, Suite 600, Houston, TX 77098. Tel.: (713) 798-3634; fax: (713) 798-7940. E-Mail: [email protected] Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) doi:10.1016/j.zefq.2008.08.015
423
ARTICLE IN PRESS Introduction The patient has a theoretical right to make his or her medical decisions, yet in practice other people – not least the physician – participate in the decision. If the physician and other family members play significant roles in the process, is the decision still authentically the patient’s? I attempt to answer that question by walking step-by-step through a specific example, expanded and modified from a description in a previous publication [1], that is hypothetical but reflective of real clinical experience. Thanh N. is a 13 year old with leukemia. Her maternal grandparents emigrated to the United States in 1971; her mother was born the following year. Her father and his twin brother were infants when their parents emigrated in 1972. Thanh’s parents married in 1993; she was born two years later, and a sister and a brother followed soon thereafter. Her mother died when Thanh was nine, and from that time onward she assumed increasing responsibility for her younger siblings. Thanh and her father have always been particularly close; after her mother’s death this relationship became even stronger. Her uncle never married and lived with his brother and sister-in-law since their marriage. At age 11, Thanh presented to her family physician with fatigue and pallor; evaluation showed acute lymphoblastic leukemia. In the next year she became familiar with the treatment routine known to all children with leukemia. Most of her care was managed as an outpatient but she was also admitted to the pediatric oncology inpatient service on 4N when the intensity of treatment or specifics of her response required it. She liked room 4N11 most because of its proximity to the nurse’s station. Thanh was an outgoing child and was well-liked by the clinical team. One of her sources of comfort when she was hospitalized was Mai, the evening custodian on 4N. Mai was a middle-aged woman who had been born in Vietnam and emigrated to the United States when she was in her teens. When Mai spoke,
424
Thanh heard echoes of her mother’s voice. Thanh experienced a relapse approximately one year after her initial treatment was completed. She underwent a bone marrow transplant, and was well until she had a symptomatic central nervous system relapse at age 13. Her pediatric oncologist presented her case at Tumor Board, and the consensus of those present was that further attempts at curative therapy offered no realistic chance of long-term survival. The oncologist discussed her situation with Thanh, her father, and her uncle the following day. The oncologist explained that no treatment could be curative at this point, but suggested that chemotherapy offered a chance of symptomatic improvement; this suggestion was accepted. Chemotherapy was begun as an outpatient but fever and rapidly dropping blood counts forced Thanh’s return to 4N after two weeks. On the evening of day 3 of her hospitalization, Mai entered 4N11 to find Thanh weeping. The rest of this essay describes the decision that followed.
Microstructure of a decision Medical decisions are not indivisible; they are composed of a number of steps (see Table 1 for a typical example). The steps outlined here, and their sequence, will vary from one decision to the next.
glaucoma, or a woman’s labor fails to progress. In these cases something must be done and a decision must therefore be made. Sometimes the recognition that it is possible to make a decision – that choice is present – is the critical first step. In Thanh’s case, this first step was taken by Mai as she entered Thanh’s room with her mop. Mai said softly, ‘‘Every night I come in you are crying, crying. You don’t have to do the chemo if you don’t want to.’’
2. Enumerate options After Mai left, Thanh called her father to say that she wanted to stop chemotherapy. The next morning, her uncle visited and suggested that she might want to try traditional Vietnamese therapy. Her father went online and found a description of a phase 1 trial for children with leukemia.
3. Gather information about the alternatives A clinician from the phase 1 team discussed an available phase 1 protocol with Thanh and her family a couple of days later. Thanh learned about traditional Vietnamese medicine from a folk healer who also visited 4N11. And her oncologist conceded what Mai had been first to make explicit: that the decision to undergo chemotherapy was an ongoing choice, one that could be reversed at any time.
4. Weigh alternatives 1. Identify decisional opportunity Sometimes it is obvious that a decision must be made – for instance, when a patient has an attack of closed angle
There was considerable discussion of these alternatives in 4N11, at Thanh’s home, and in the 4N staff conference room in the next 48 hours. Thanh’s
Table 1. Microstructure of a Typical Medical Decision.
1 2 3 4 5 6 7 8
Step
Possible actors
Identify decisional opportunity Enumerate options Gather information Weigh alternatives Identify single candidate choice Negotiate Make decision Authorize decision
Anyone Anyone, but most often the physician Anyone, but most often the physician Anyone, but most often the physician Anyone, but most often the physician All involved Patient or surrogate Legally authorized decision maker
Z. Evid. Fortbild. Qual. Gesundh. wesen 102 (2008) 423–425 www.elsevier.de/zefq
ARTICLE IN PRESS father wanted her to continue chemotherapy, explaining to the team psychologist that he felt as if stopping treatment would be giving up on his daughter. The comments of other team members at the multidisciplinary conference persuaded her oncologist, who had initially believed that chemotherapy was the only reasonable choice for Thanh, to soften his stance. Thanh herself was more animated than she had been for weeks as she talked about the possibility of going home.
5. Identify a single candidate choice The oncologist held a family conference; Thanh, her father, her uncle, and three members of the 4N treatment team attended. A conference like this is sometimes the time when one person – often, but not always, the physician – first identifies one choice as probably best. The person who takes this step assumes what we call decisional priority [2]. Classic decision making theory assumes that this step is taken only after a careful and rational weighing of the available alternatives, but real people make decisions much more impulsively (although this does not imply that their decisions are unwise) [3]. The concept of decisional priority is most useful when the candidate choice is accepted by other participants. In Thanh’s case, there was disagreement over the best choice from the beginning, with the oncologist and Thanh’s father favoring continued chemotherapy and Thanh preferring to stop it.
6. Negotiation The oncologist was willing to abide by the family’s decision for or against continued chemotherapy, but first the conflict between Thanh and her father needed to be resolved. Although some children have only limited decisionmaking maturity at age 13, Thanh was an experienced patient who understood the reality of cancer therapy and was well positioned to make her own choice. The team psychologist believed that she was not depressed and that her central nervous system involvement
did not lesser her understanding of her situation. When parent and mature child disagree over a decision of this magnitude, the physician should attempt to broker an agreement. Although the parents retain legal decision making power, the physician should always strive to include the mature child when life-and-death decisions are being made [4].
7. Final decision Negotiation is followed by a final decision. Thanh’s father capitulated, his pain over this choice ameliorated by Thanh’s agreement to begin a traditional Vietnamese therapy and to consider participation in a phase 1 trial. This allowed her father the comfort of knowing that they were not giving up all treatment.
8. Legal authorization The final step in the process is legal authorization, either orally or in writing.
Postscript Thanh’s fever resolved and her white count and platelet count returned to acceptable levels three days after chemotherapy was discontinued. She was discharged with follow-up by the hospice team and home visits by the traditional healer.
Discussion Commentary based on a conventional Western emphasis on individual autonomy usually focuses on the physicianpatient dyad as the locus of medical decision making [5–8]. A model of medical decision making that is restricted to patient and physician misses the important contributions that others may make and understates the many ways a decision may be shared. Sometimes one person is the sole decision maker, sometimes one person makes a decision with support or guidance from others, and sometimes a decision is shared among two or more people. A physician may be involved in a decision by taking one or more of the early steps in the process
Z. Evid. Fortbild. Qual. Gesundh. wesen 102 (2008) 423–425 www.elsevier.de/zefq
without necessarily compromising the decisional authority of patient and family. In Thanh’s case, who made the decision to change from conventional chemotherapy to complementary care? Thanh’s father, her uncle, her oncologist, the multidisciplinary team, the phase 1 team, and particularly Mai all played significant roles, but this decision is clearly Thanh’s. In other circumstances a decision may be so thoroughly shared between two or three people that it is impossible to say that any individual made the decision. Medical decisions are as varied as the patients, families, and physicians who must make them.
Acknowledgements I am grateful for the encouragement of Norbert Donner-Banzhoff and the Department of General Practice/Family Medicine team at the University of Marburg and for the stimulating conference that was the genesis of this paper.
References [1] Whitney SN, Ethier AM, Fruge E, Berg S, McCullough LB, Hockenberry M. Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. J Clin Oncol 2006 Jan 1;24(1):160–5. [2] Whitney SN. A new model of medical decisions: exploring the limits of shared decision making. Med Decis Making 2003 Jul–Aug;23(4):275–80. [3] Schneider CE. The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York: Oxford University Press; 1998. [4] American Academy of Pediatrics Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995;95(2):314–7. [5] President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making Health Care Decisions: The Ethical and Legal Implications of Informed Consent in the PatientPractitioner Relationship. Washington DC: President’s Commission; 1982. [6] Katz J. The Silent World of Doctor and Patient. New York: The Free Press; 1984. [7] Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA 1992; 267(16):2221–6. [8] Deber RB, Kraetschmer N, Irvine J. What role do patients wish to play in treatment decision making? Arch Intern Med 1996;156(13):1414–20.
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www.elsevier.de/zefq Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) 102 (2008) 423–425
Schwerpunkt
Whose decision is it? The microstructure of medical decision making Simon N. Whitney William W. O’Donnell, MD, and Regina O’Donnell Chair in Family Medicine, Department of Family and Community Medicine, Houston Center for Education and Research on Therapeutics, Baylor College of Medicine, 3701 Kirby Drive, Suite 600, Houston, TX 77098
Summary Medical decision making is sometimes viewed as a relatively simple process in which a decision may be made by the patient, by the physician, or by both patient and physician working together. This two-dimensional portrayal eclipses the important role that others, such as other professionals, family, and friends, may play in the process; as an example of this phenomenon, we trace the evolution of a decision of a teenager with
cancer who is contemplating discontinuing chemotherapy. This example also shows how a decision can usefully be understood as consisting of a number of identifiable substeps – what we call the ‘‘microstructure’’ of the decision. These steps show how the physician can play an important role without usurping the patient’s rightful decisional authority.
Key words: decision making, decision theory, informed consent, treatment refusal, patient participation, physician-patient relations
Wessen Entscheidung ist es? Die Mikrostruktur der medizinischen Entscheidungsfindung Zusammenfassung Gelegentlich wird die medizinische Entscheidungsfindung als ein vergleichsweise einfacher Prozess aufgefasst, in dessen Verlauf der Patient, der Arzt oder Patient und Arzt gemeinsam eine Entscheidung treffen. Diese zweidimensionale Sichtweise verdeckt die wichtige Rolle, die Dritte – beispielsweise andere A¨rzte, Angeho¨rige und Freunde – in diesem Prozess spielen ko¨nnen; als Beispiel fu¨r dieses Pha¨nomen werden wir die Entwicklung der Entscheidung einer an Krebs erkrankten Jugendlichen
nachzeichnen, die mit dem Gedanken spielt, ihre Chemotherapie abzubrechen. Dieses Beispiel verdeutlicht auch, dass eine solche Entscheidung sinnvollerweise auch als aus verschiedenen Teilschritten bestehend verstanden werden kann – was wir als die Mikrostruktur’’ der Entscheidung ’’ bezeichnen. Diese Schritte zeigen, wie der Arzt eine wichtige Rolle u¨bernehmen kann, ohne sich die rechtma¨ßige Entscheidungsautorita¨t des Patienten anzueignen.
Schlu¨sselwo¨rter: Entscheidungsfindung, Theorie der Entscheidung, informierte Zustimmung (informed consent), Therapieverweigerung Patientenbeteiligung, Arzt-Patient-Beziehung
Corresponding author. Simon N. Whitney, MD, JD, Department of Family and Community Medicine, Houston Center for Education and Research on Therapeutics,
Baylor College of Medicine, 3701 Kirby Drive, Suite 600, Houston, TX 77098. Tel.: (713) 798-3634; fax: (713) 798-7940. E-Mail: [email protected] Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) doi:10.1016/j.zefq.2008.08.015
423
ARTICLE IN PRESS Introduction The patient has a theoretical right to make his or her medical decisions, yet in practice other people – not least the physician – participate in the decision. If the physician and other family members play significant roles in the process, is the decision still authentically the patient’s? I attempt to answer that question by walking step-by-step through a specific example, expanded and modified from a description in a previous publication [1], that is hypothetical but reflective of real clinical experience. Thanh N. is a 13 year old with leukemia. Her maternal grandparents emigrated to the United States in 1971; her mother was born the following year. Her father and his twin brother were infants when their parents emigrated in 1972. Thanh’s parents married in 1993; she was born two years later, and a sister and a brother followed soon thereafter. Her mother died when Thanh was nine, and from that time onward she assumed increasing responsibility for her younger siblings. Thanh and her father have always been particularly close; after her mother’s death this relationship became even stronger. Her uncle never married and lived with his brother and sister-in-law since their marriage. At age 11, Thanh presented to her family physician with fatigue and pallor; evaluation showed acute lymphoblastic leukemia. In the next year she became familiar with the treatment routine known to all children with leukemia. Most of her care was managed as an outpatient but she was also admitted to the pediatric oncology inpatient service on 4N when the intensity of treatment or specifics of her response required it. She liked room 4N11 most because of its proximity to the nurse’s station. Thanh was an outgoing child and was well-liked by the clinical team. One of her sources of comfort when she was hospitalized was Mai, the evening custodian on 4N. Mai was a middle-aged woman who had been born in Vietnam and emigrated to the United States when she was in her teens. When Mai spoke,
424
Thanh heard echoes of her mother’s voice. Thanh experienced a relapse approximately one year after her initial treatment was completed. She underwent a bone marrow transplant, and was well until she had a symptomatic central nervous system relapse at age 13. Her pediatric oncologist presented her case at Tumor Board, and the consensus of those present was that further attempts at curative therapy offered no realistic chance of long-term survival. The oncologist discussed her situation with Thanh, her father, and her uncle the following day. The oncologist explained that no treatment could be curative at this point, but suggested that chemotherapy offered a chance of symptomatic improvement; this suggestion was accepted. Chemotherapy was begun as an outpatient but fever and rapidly dropping blood counts forced Thanh’s return to 4N after two weeks. On the evening of day 3 of her hospitalization, Mai entered 4N11 to find Thanh weeping. The rest of this essay describes the decision that followed.
Microstructure of a decision Medical decisions are not indivisible; they are composed of a number of steps (see Table 1 for a typical example). The steps outlined here, and their sequence, will vary from one decision to the next.
glaucoma, or a woman’s labor fails to progress. In these cases something must be done and a decision must therefore be made. Sometimes the recognition that it is possible to make a decision – that choice is present – is the critical first step. In Thanh’s case, this first step was taken by Mai as she entered Thanh’s room with her mop. Mai said softly, ‘‘Every night I come in you are crying, crying. You don’t have to do the chemo if you don’t want to.’’
2. Enumerate options After Mai left, Thanh called her father to say that she wanted to stop chemotherapy. The next morning, her uncle visited and suggested that she might want to try traditional Vietnamese therapy. Her father went online and found a description of a phase 1 trial for children with leukemia.
3. Gather information about the alternatives A clinician from the phase 1 team discussed an available phase 1 protocol with Thanh and her family a couple of days later. Thanh learned about traditional Vietnamese medicine from a folk healer who also visited 4N11. And her oncologist conceded what Mai had been first to make explicit: that the decision to undergo chemotherapy was an ongoing choice, one that could be reversed at any time.
4. Weigh alternatives 1. Identify decisional opportunity Sometimes it is obvious that a decision must be made – for instance, when a patient has an attack of closed angle
There was considerable discussion of these alternatives in 4N11, at Thanh’s home, and in the 4N staff conference room in the next 48 hours. Thanh’s
Table 1. Microstructure of a Typical Medical Decision.
1 2 3 4 5 6 7 8
Step
Possible actors
Identify decisional opportunity Enumerate options Gather information Weigh alternatives Identify single candidate choice Negotiate Make decision Authorize decision
Anyone Anyone, but most often the physician Anyone, but most often the physician Anyone, but most often the physician Anyone, but most often the physician All involved Patient or surrogate Legally authorized decision maker
Z. Evid. Fortbild. Qual. Gesundh. wesen 102 (2008) 423–425 www.elsevier.de/zefq
ARTICLE IN PRESS father wanted her to continue chemotherapy, explaining to the team psychologist that he felt as if stopping treatment would be giving up on his daughter. The comments of other team members at the multidisciplinary conference persuaded her oncologist, who had initially believed that chemotherapy was the only reasonable choice for Thanh, to soften his stance. Thanh herself was more animated than she had been for weeks as she talked about the possibility of going home.
5. Identify a single candidate choice The oncologist held a family conference; Thanh, her father, her uncle, and three members of the 4N treatment team attended. A conference like this is sometimes the time when one person – often, but not always, the physician – first identifies one choice as probably best. The person who takes this step assumes what we call decisional priority [2]. Classic decision making theory assumes that this step is taken only after a careful and rational weighing of the available alternatives, but real people make decisions much more impulsively (although this does not imply that their decisions are unwise) [3]. The concept of decisional priority is most useful when the candidate choice is accepted by other participants. In Thanh’s case, there was disagreement over the best choice from the beginning, with the oncologist and Thanh’s father favoring continued chemotherapy and Thanh preferring to stop it.
6. Negotiation The oncologist was willing to abide by the family’s decision for or against continued chemotherapy, but first the conflict between Thanh and her father needed to be resolved. Although some children have only limited decisionmaking maturity at age 13, Thanh was an experienced patient who understood the reality of cancer therapy and was well positioned to make her own choice. The team psychologist believed that she was not depressed and that her central nervous system involvement
did not lesser her understanding of her situation. When parent and mature child disagree over a decision of this magnitude, the physician should attempt to broker an agreement. Although the parents retain legal decision making power, the physician should always strive to include the mature child when life-and-death decisions are being made [4].
7. Final decision Negotiation is followed by a final decision. Thanh’s father capitulated, his pain over this choice ameliorated by Thanh’s agreement to begin a traditional Vietnamese therapy and to consider participation in a phase 1 trial. This allowed her father the comfort of knowing that they were not giving up all treatment.
8. Legal authorization The final step in the process is legal authorization, either orally or in writing.
Postscript Thanh’s fever resolved and her white count and platelet count returned to acceptable levels three days after chemotherapy was discontinued. She was discharged with follow-up by the hospice team and home visits by the traditional healer.
Discussion Commentary based on a conventional Western emphasis on individual autonomy usually focuses on the physicianpatient dyad as the locus of medical decision making [5–8]. A model of medical decision making that is restricted to patient and physician misses the important contributions that others may make and understates the many ways a decision may be shared. Sometimes one person is the sole decision maker, sometimes one person makes a decision with support or guidance from others, and sometimes a decision is shared among two or more people. A physician may be involved in a decision by taking one or more of the early steps in the process
Z. Evid. Fortbild. Qual. Gesundh. wesen 102 (2008) 423–425 www.elsevier.de/zefq
without necessarily compromising the decisional authority of patient and family. In Thanh’s case, who made the decision to change from conventional chemotherapy to complementary care? Thanh’s father, her uncle, her oncologist, the multidisciplinary team, the phase 1 team, and particularly Mai all played significant roles, but this decision is clearly Thanh’s. In other circumstances a decision may be so thoroughly shared between two or three people that it is impossible to say that any individual made the decision. Medical decisions are as varied as the patients, families, and physicians who must make them.
Acknowledgements I am grateful for the encouragement of Norbert Donner-Banzhoff and the Department of General Practice/Family Medicine team at the University of Marburg and for the stimulating conference that was the genesis of this paper.
References [1] Whitney SN, Ethier AM, Fruge E, Berg S, McCullough LB, Hockenberry M. Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. J Clin Oncol 2006 Jan 1;24(1):160–5. [2] Whitney SN. A new model of medical decisions: exploring the limits of shared decision making. Med Decis Making 2003 Jul–Aug;23(4):275–80. [3] Schneider CE. The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York: Oxford University Press; 1998. [4] American Academy of Pediatrics Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995;95(2):314–7. [5] President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making Health Care Decisions: The Ethical and Legal Implications of Informed Consent in the PatientPractitioner Relationship. Washington DC: President’s Commission; 1982. [6] Katz J. The Silent World of Doctor and Patient. New York: The Free Press; 1984. [7] Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA 1992; 267(16):2221–6. [8] Deber RB, Kraetschmer N, Irvine J. What role do patients wish to play in treatment decision making? Arch Intern Med 1996;156(13):1414–20.
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