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Clinical decision-making at the end of life: the role of the patient’s wish
Patient Education and Counseling 50 (2003) 263–264
Clinical decision-making at the end of life: the role of the patient’s wish Adriaan Vissera,*, Anna F. van Leeuwenb, Elsbeth Voogtb, Agnes van der Heideb, Karin van der Rijtc a
Helen Dowling Institute, P.O. Box 85061, 3508 AB Utrecht, The Netherlands Department of Public Health, Erasmus MC, University Medical Center, Rotterdam, The Netherlands c Department of Medical Oncology, Erasmus MC-Daniel den Hoed Cancer Centre, Rotterdam, The Netherlands b
Received 14 June 2002; received in revised form 24 September 2002; accepted 2 December 2002
Abstract Information about medical decision-making in the last stage of life and the wishes of terminally ill patients is scarce. At two hospital departments, we observed 16 multidisciplinary meetings and recorded 110 discussions concerning 74 patients. Thirty-three of these discussions concerned either starting or forgoing potentially life-prolonging therapy or applying potentially life-shortening medical interventions. The wishes of the patients were considered in 15 of these discussions. In 6 of these 15 discussions, the patient’s wish was unknown. In five discussions the decision was postponed to enable discussions with the patients. Potentially life-shortening decisions were never made if patients were known to disagree. No decisions about physician-assisted death were made. The study shows that medical end-of-life decisions are commonly shared between the involved caregivers and the patients. # 2003 Elsevier Ireland Ltd. All rights reserved. Keywords: Cancer; End-of-life care; Patients; Shared decision
In seriously ill cancer patients, often decisions have to be made about whether or not to continue or start a certain therapy because the benefits may not be in proportion to the possible drawbacks. Complex transitions during the disease process and the availability of treatment options complicate the decision-making process for physicians as well as patients and their families [1–3]. Most studies about endof-life decisions are post hoc questionnaire studies [4–6]. In preparation of a longitudinal study on problems and needs (medical, nursing, psychosocial, spiritual) of incurably ill cancer patients, the process of clinical decision-making was observed. In this article, we report mainly about the role of the patient’s wish in clinical decision-making about end-oflife decisions.
and at the Palliative Care Unit of the Erasmus MC-Daniel den Hoed Cancer Centre, Rotterdam. At both departments, medical care for hospitalised patients with incurable cancer is weekly discussed in multidisciplinary meetings. A researcher (physician and/or psychologist) observed the weekly meetings, using a standardised checklist that included the following topics: location of the meeting, profession of those present at the meeting, patient characteristics, prior treatment, whether or not end-of-life decisions were discussed, type of decisions discussed and opinions and arguments used in the discussions. Additional information was obtained from the medical records and, if the observed information was not clear to the researcher, information was discussed with one of the medical specialists. Patients were informed about the study and the registrations; all data were recorded anonymously.
2. Methods
3. Results
During two periods of one month the decision-making process was observed at the Department of Internal Oncology
We observed 16 meetings and recorded 110 discussions concerning 74 patients. For the 74 patients, worsening of symptoms was the most frequent reason for admission (in 42% of the cases), followed by planned therapy (39%), complications (7%) and a difficult home situation (4%).
1. Introduction
* Corresponding author. Tel.: þ31-30-2524020; fax: þ31-30-2524022. E-mail address: [email protected] (A. Visser).
0738-3991/$ – see front matter # 2003 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00046-6
264
A. Visser et al. / Patient Education and Counseling 50 (2003) 263–264
Table 1 Patient’s wishes in decision-making at the end of life End-of-life decision has been taken Yes
No
Postponed
Patient’s wish was considered in the discussion Yes 2 2 11 No 6 2 8 Total
8
4
19
Total 15 16 31
Some patients were discussed more than one time because they stayed in the hospital for several weeks. In 33 of the 110 discussions, end-of-life decisions were discussed (concerning 23 patients); these discussions involved starting or forgoing potentially life-prolonging therapy or the use of potentially life-shortening medication such as morphine. For 2 of the 33 discussions, data about the patient’s wish are missing. For 12 of the 31 cases with complete data, the potentially life-shortening intervention had been discussed with the patients prior to the meeting. In 15 of the 31 cases, the (known or presumed) wish of the patients was discussed; in 6 of these 15 cases, this wish was unknown (Table 1). In 16 of the 31 cases, the patient’s wish was not discussed. In these 16 discussions the used motives concerned mainly medical futility; 8 of these 16 discussions resulted in postponement of a decision until medical information became more clear, 6 resulted in an end-of-life decision. The six end-of-life decisions were three times starting or increasing pain medication and three times forgoing radiotherapy. The patient’s wish was more frequently discussed at the Palliative Care Unit than at the Department of Internal Oncology (w2-test; P ¼ 0:02). The (presumed) wish of the patient was a decision-making motive in 14 of the 15 discussions. In Table 1 it is shown that end-oflife decisions were made six times without discussing the patient’s wish. End-of-life decisions were never made if patients were known to disagree. Also no decisions about physician-assisted death were made.
4. Conclusions Medical end-of-life decisions consist of decisions about whether to start or withhold potentially life-prolonging therapy, decisions about whether potentially life-prolonging therapy is continued or not, decisions about whether or not to use potentially life-shortening medication to treat serious suffering, and decisions about physician-assisted death [1–3]. We conclude from this observational study that medical
end-of-life decisions are often an issue in medical care for hospitalised incurable cancer patients. The patient’s wish concerning medical treatment was not always included in the multidisciplinary discussions about end-of-life decisionmaking. Decisions to shorten life and physician-assisted death were never made if patients were known to disagree. In some cases, the disproportionality of applying a potentially life-prolonging therapy may be obvious from a medical perspective, namely the chance of the therapy being successful. In discussions about such therapies, the patient’s wish could be irrelevant. Furthermore, in some cases the patient’s wish may be discussed at another occasion. The wish may be not yet known at the time of the discussion, discussed in a previous or subsequent stage of decisionmaking or it may be discussed outside the context of multidisciplinary meetings.
5. Practice implication The study shows that it is practically possible to observe decision-making in the last stage of life about decisions whether to start, continue or withhold potentially lifeprolonging therapy, as well as decisions about whether or not to use potentially life-shortening medication to treat serious suffering or hasten the end-of-life. It is important for a valid decision that the physicians and other health care providers are informed about patients’ wishes concerning end-of-life decisions.
References [1] van der Maas PJ, van Delden JJM, Pijnenborg L. Euthanasia and other medical decisions concerning the end of life. Health Policy 1992;22: 1–262. [2] Pijnenborg L. End-of-life decisions in Dutch medical practice. Alblasserdam: Erasmus University Rotterdam; 1995. [3] Gordijn B, Visser, editors. Issues in Dutch palliative care. Special issue. Patient Educ Couns 2000;41:1–133. [4] Willems DL, Daniels ER, van der Wal G, van der Maas PJ, Emanuel EJ. Attitudes and practices concerning the end of life: a comparison between physicians from the United States and from The Netherlands. Arch Int Med 2000;160:63–8. [5] Haverkate I, Onwuteaka-Philipsen BD, van der Heide A, Kostense PJ, van der Wal G, van der Maas PJ. Refused and granted requests for euthanasia and assisted suicide in The Netherlands: interview study with structured questionnaire. Br Med J 2000;321:865–6. [6] van der Wal G, van der Maas PJ, Bosma JM, Onwuteaka-Philipsen BD, van der Willems DL, Haverkate I. Evaluation of the notification procedure for physician-assisted death in The Netherlands. N Engl J Med 1996;335:1706–11.
Clinical decision-making at the end of life: the role of the patient’s wish Adriaan Vissera,*, Anna F. van Leeuwenb, Elsbeth Voogtb, Agnes van der Heideb, Karin van der Rijtc a
Helen Dowling Institute, P.O. Box 85061, 3508 AB Utrecht, The Netherlands Department of Public Health, Erasmus MC, University Medical Center, Rotterdam, The Netherlands c Department of Medical Oncology, Erasmus MC-Daniel den Hoed Cancer Centre, Rotterdam, The Netherlands b
Received 14 June 2002; received in revised form 24 September 2002; accepted 2 December 2002
Abstract Information about medical decision-making in the last stage of life and the wishes of terminally ill patients is scarce. At two hospital departments, we observed 16 multidisciplinary meetings and recorded 110 discussions concerning 74 patients. Thirty-three of these discussions concerned either starting or forgoing potentially life-prolonging therapy or applying potentially life-shortening medical interventions. The wishes of the patients were considered in 15 of these discussions. In 6 of these 15 discussions, the patient’s wish was unknown. In five discussions the decision was postponed to enable discussions with the patients. Potentially life-shortening decisions were never made if patients were known to disagree. No decisions about physician-assisted death were made. The study shows that medical end-of-life decisions are commonly shared between the involved caregivers and the patients. # 2003 Elsevier Ireland Ltd. All rights reserved. Keywords: Cancer; End-of-life care; Patients; Shared decision
In seriously ill cancer patients, often decisions have to be made about whether or not to continue or start a certain therapy because the benefits may not be in proportion to the possible drawbacks. Complex transitions during the disease process and the availability of treatment options complicate the decision-making process for physicians as well as patients and their families [1–3]. Most studies about endof-life decisions are post hoc questionnaire studies [4–6]. In preparation of a longitudinal study on problems and needs (medical, nursing, psychosocial, spiritual) of incurably ill cancer patients, the process of clinical decision-making was observed. In this article, we report mainly about the role of the patient’s wish in clinical decision-making about end-oflife decisions.
and at the Palliative Care Unit of the Erasmus MC-Daniel den Hoed Cancer Centre, Rotterdam. At both departments, medical care for hospitalised patients with incurable cancer is weekly discussed in multidisciplinary meetings. A researcher (physician and/or psychologist) observed the weekly meetings, using a standardised checklist that included the following topics: location of the meeting, profession of those present at the meeting, patient characteristics, prior treatment, whether or not end-of-life decisions were discussed, type of decisions discussed and opinions and arguments used in the discussions. Additional information was obtained from the medical records and, if the observed information was not clear to the researcher, information was discussed with one of the medical specialists. Patients were informed about the study and the registrations; all data were recorded anonymously.
2. Methods
3. Results
During two periods of one month the decision-making process was observed at the Department of Internal Oncology
We observed 16 meetings and recorded 110 discussions concerning 74 patients. For the 74 patients, worsening of symptoms was the most frequent reason for admission (in 42% of the cases), followed by planned therapy (39%), complications (7%) and a difficult home situation (4%).
1. Introduction
* Corresponding author. Tel.: þ31-30-2524020; fax: þ31-30-2524022. E-mail address: [email protected] (A. Visser).
0738-3991/$ – see front matter # 2003 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00046-6
264
A. Visser et al. / Patient Education and Counseling 50 (2003) 263–264
Table 1 Patient’s wishes in decision-making at the end of life End-of-life decision has been taken Yes
No
Postponed
Patient’s wish was considered in the discussion Yes 2 2 11 No 6 2 8 Total
8
4
19
Total 15 16 31
Some patients were discussed more than one time because they stayed in the hospital for several weeks. In 33 of the 110 discussions, end-of-life decisions were discussed (concerning 23 patients); these discussions involved starting or forgoing potentially life-prolonging therapy or the use of potentially life-shortening medication such as morphine. For 2 of the 33 discussions, data about the patient’s wish are missing. For 12 of the 31 cases with complete data, the potentially life-shortening intervention had been discussed with the patients prior to the meeting. In 15 of the 31 cases, the (known or presumed) wish of the patients was discussed; in 6 of these 15 cases, this wish was unknown (Table 1). In 16 of the 31 cases, the patient’s wish was not discussed. In these 16 discussions the used motives concerned mainly medical futility; 8 of these 16 discussions resulted in postponement of a decision until medical information became more clear, 6 resulted in an end-of-life decision. The six end-of-life decisions were three times starting or increasing pain medication and three times forgoing radiotherapy. The patient’s wish was more frequently discussed at the Palliative Care Unit than at the Department of Internal Oncology (w2-test; P ¼ 0:02). The (presumed) wish of the patient was a decision-making motive in 14 of the 15 discussions. In Table 1 it is shown that end-oflife decisions were made six times without discussing the patient’s wish. End-of-life decisions were never made if patients were known to disagree. Also no decisions about physician-assisted death were made.
4. Conclusions Medical end-of-life decisions consist of decisions about whether to start or withhold potentially life-prolonging therapy, decisions about whether potentially life-prolonging therapy is continued or not, decisions about whether or not to use potentially life-shortening medication to treat serious suffering, and decisions about physician-assisted death [1–3]. We conclude from this observational study that medical
end-of-life decisions are often an issue in medical care for hospitalised incurable cancer patients. The patient’s wish concerning medical treatment was not always included in the multidisciplinary discussions about end-of-life decisionmaking. Decisions to shorten life and physician-assisted death were never made if patients were known to disagree. In some cases, the disproportionality of applying a potentially life-prolonging therapy may be obvious from a medical perspective, namely the chance of the therapy being successful. In discussions about such therapies, the patient’s wish could be irrelevant. Furthermore, in some cases the patient’s wish may be discussed at another occasion. The wish may be not yet known at the time of the discussion, discussed in a previous or subsequent stage of decisionmaking or it may be discussed outside the context of multidisciplinary meetings.
5. Practice implication The study shows that it is practically possible to observe decision-making in the last stage of life about decisions whether to start, continue or withhold potentially lifeprolonging therapy, as well as decisions about whether or not to use potentially life-shortening medication to treat serious suffering or hasten the end-of-life. It is important for a valid decision that the physicians and other health care providers are informed about patients’ wishes concerning end-of-life decisions.
References [1] van der Maas PJ, van Delden JJM, Pijnenborg L. Euthanasia and other medical decisions concerning the end of life. Health Policy 1992;22: 1–262. [2] Pijnenborg L. End-of-life decisions in Dutch medical practice. Alblasserdam: Erasmus University Rotterdam; 1995. [3] Gordijn B, Visser, editors. Issues in Dutch palliative care. Special issue. Patient Educ Couns 2000;41:1–133. [4] Willems DL, Daniels ER, van der Wal G, van der Maas PJ, Emanuel EJ. Attitudes and practices concerning the end of life: a comparison between physicians from the United States and from The Netherlands. Arch Int Med 2000;160:63–8. [5] Haverkate I, Onwuteaka-Philipsen BD, van der Heide A, Kostense PJ, van der Wal G, van der Maas PJ. Refused and granted requests for euthanasia and assisted suicide in The Netherlands: interview study with structured questionnaire. Br Med J 2000;321:865–6. [6] van der Wal G, van der Maas PJ, Bosma JM, Onwuteaka-Philipsen BD, van der Willems DL, Haverkate I. Evaluation of the notification procedure for physician-assisted death in The Netherlands. N Engl J Med 1996;335:1706–11.