Considerations of Healthcare Professionals in Medical Decision-Making About Treatment for Clinical End-Stage Cancer Patients

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1 Vol. 28 No. 4 October 2004 Journal of Pain and Symptom Management 351 Original Article Considerations of Healthcare Professionals in Medical Decision-Making About Treatment for Clinical End-Stage Cancer Patients Anna F. van Leeuwen, MD, PhD, Elsbeth Voogt, MA, Adriaan Visser, PhD, Carin C.D. van der Rijt, MD, PhD, and Agnes van der Heide, MD, PhD Department of Public Health (A.F.v.L., E.V., A.v.d.H.), Erasmus MC, University Medical Center Rotterdam, Rotterdam; Helen Dowling Institute (A.V.), Utrecht; and Department of Medical Oncology (C.v.d.R.), Erasmus MC Daniel den Hoed Cancer Center, Rotterdam, The Netherlands Abstract In order to determine which considerations healthcare professionals use in decision-making about treatment for inpatients with end-stage cancer, we observed 110 discussions at multidisciplinary meetings at two oncology departments. The discussions concerned 74 patients. Thirty-three of the 110 discussions concerned potentially life-prolonging or lifeshortening treatments. The most important decision-making considerations were chance of improvement, patient s treatment wishes, amount of suffering, and the chance of therapy being successful. Discussions resulted in 6 decisions that might shorten life, 10 decisions that might prolong life, and 23 postponements of decisions because of lack of information. These observations confirm that medical interventions with a possible life-prolonging or lifeshortening effect are a frequently discussed issue in medical decision-making for end-stage cancer patients in The Netherlands. Before making a decision, healthcare professionals gather extensive information about what gain is to be expected from an intervention. When healthcare professionals establish that a decision would be medically appropriate, the patient s wish will often be an important consideration. J Pain Symptom Manage 2004;28: U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Decision-making, palliative, cancer, end-of-life, life-prolonging, life-shortening, healthcare professionals, multidisciplinary Address reprint requests to: Elsbeth Voogt, MA, Department of Public Health, Erasmus MC, University Medical Center, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands. Accepted for publication: January 2, U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. Introduction In the management of cancers that are eventually incurable, several phases can be distinguished. At first, the goal of treatment is to cure the disease. When curing the disease is /04/$ see front matter doi: /j.jpainsymman

2 352 van Leeuwen et al. Vol. 28 No. 4 October 2004 no longer likely or possible, treatment is often predominantly aimed at prolonging life or alleviating symptoms. A transition from tumor treatments towards palliation occurs. When, in a later stage, prolongation of life is no longer an appropriate goal, decisions can be made to withdraw or withhold potentially life-prolonging treatments. Sometimes, medication with a potentially life-shortening effect is used to alleviate serious suffering. In this complex transition during the disease process, physicians, nurses, patients and family have to address questions such as: When is a certain life-prolonging therapy to be withdrawn? When is a potentially lifeshortening side effect of symptom treatment acceptable? In terminally ill patients, it is often decided that a certain therapy is not to be continued or started because the benefits are not in proportion to the drawbacks. With the increasing number of possible treatments, the number of decisions about treatments is increasing as well. Decision-making about whether or not to prolong life or to hasten death is often difficult. In a nationwide study of medical practices concerning the end of life in The Netherlands in 2001, decisions to withhold or withdraw lifeprolonging treatment were made in 20%. 1 Pain and symptoms were alleviated with potentially life-shortening doses of opioids in 15% of dying patients. 1 Clinical specialists withheld or withdrew treatment in 35% of all deaths they were involved with. 1 In Flanders, Belgium, these percentages were similar. 2 Few empirical data are available on the process of making such decisions. The role of the patient in the process of making such decisions depends on patients and healthcare professionals characteristics. Some studies have demonstrated that when a decision was made not to resuscitate (DNR), other treatments were also less likely to be applied. 3 In a group of breast cancer patients, patients more often appreciated shared decision-making about treatments (63%) than predicted (39%) by their physicians. 4 Patient preferences with respect to treatment may differ from what healthcare professionals expect. When asked in a questionnaire, many cancer patients would accept second-line chemotherapy with a much lower chance and smaller duration of benefit than would healthy controls and healthcare professionals. 5 In order to study the actual decision-making process, we observed medical decision-making in multidisciplinary meetings in a clinical setting to determine how often decisions about treatment with a potential effect on the life span are made and which considerations play a role in these decisions. Methods In the Department of Medical Oncology and in the Palliative Care Unit (PCU) of the Erasmus MC Daniel den Hoed Cancer Center Rotterdam, The Netherlands, medical treatment of all hospitalized patients with cancer is discussed weekly by healthcare professionals in multidisciplinary meetings. In both departments, we observed eight meetings and registered details of the discussions about the treatments of patients with incurable cancer. The location of the meeting (oncology department or PCU), which healthcare professionals were present at the meeting, patient characteristics, reasons for admission, cancer type, present and past therapy, discussed treatments and decisions, and the considerations in the discussions were all registered. We designed an extensive registration form that was tested in a pilot study. In this pilot, two observers registered data during the first four meetings. The forms were compared and no major differences were found. One observer, therefore, carried out the rest of the registration. If any aspect of a discussion was not clear to the observer, additional information was obtained from a medical specialist who attended the meeting or from the patient s medical record. The following decisions were distinguished: decisions about starting, continuing or forgoing potentially life-prolonging therapy; decisions about using potentially lifeshortening medication to treat serious suffering with the hastening of death as a possible or certain side effect; and decisions about euthanasia or physician-assisted suicide. The type of decisions, the opinion of patients and spouses, if discussed, and healthcare professionals considerations were registered. We obtained approval from the medical ethics committee to observe these meetings. Patients and healthcare professionals were informed with an information sheet about the study and collected data were made anonymous immediately after the meetings.

3 Vol. 28 No. 4 October 2004 Considerations of Healthcare Professionals in Medical Decision-Making 353 Results Characteristics of the Multidisciplinary Meetings During 16 multidisciplinary meetings, we registered details about 110 discussions concerning 74 patients. Table 1 shows the characteristics of the discussions in both departments. In the PCU, discussions were, on average, attended by 12 healthcare professionals as compared to 6 in the medical oncology department. Attending healthcare professionals were medical specialists from several disciplines, nurses and other healthcare professionals; in the PCU there were sometimes healthcare professionals from outside the hospital present. Discussions in the PCU took, on average, more time than in the medical oncology department, and more often concerned treatments with a possible effect on the length of life. There were no significant differences between patients at the two departments in gender (mean: 53% female), age (mean: 58 years), and disease duration (mean: 32 months). Primary tumors most frequently originated from the lung (22%), bowel (19%), head and neck region (12%), and breast (12%). Planned therapy was the most frequent reason for admission to the hospital (always in the medical oncology department), followed by worsening of complaints (predominantly in the PCU), complications, and a difficult home situation. For 19 of the 74 patients, a decision to forgo potentially life-prolonging treatment had been made and recorded in the medical records in the preceding two years. Medical Interventions That May Prolong Life or Hasten Death There was discussion about medical interventions that could prolong life or hasten death in 33 of the 110 discussions. These discussions took, on average, more time (mean: 12 minutes) than other discussions (mean: 7 minutes; P 0.001). Patients for whom such interventions were discussed were not different from the other patients in disease duration or age. In 33 discussions, 40 interventions were discussed: 8 interventions concerned the continuation of potentially life-prolonging treatment, 20 the starting of potentially life-prolonging treatment and, 12 the application of potentially lifeshortening medication. Most frequently, it concerned starting or continuing chemotherapy (n 12) followed by starting radiotherapy (n 10), and starting or adjusting symptom medication (n 10). The medication discussions concerned starting or raising the dose of opioids to treat pain (n 6), raising opioid doses to treat pain with the acceptance of the potential hastening of death as a side effect (n 2), starting sedatives to treat anxiety (n 1), and the possibility of terminal sedation (n 1). Patient problems that were most Table 1 Multidisciplinary Meetings in Two Departments Medical Oncology PCU a Total P-value b Number of meetings Total number of discussions Discussion duration (minutes): mean (min-max) 7 (1 30) 10 (2 30) 8 (1 30) Number of healthcare professionals present during 6 (3 10) 12 (9 15) 8 (3 15) the discussions: mean (min-max) Number of discussions concerning treatments with possible 14 (22%) 19 (41%) 33 (30%) 0.04 influence on the length of life Total number of discussed patients Number of discussions per patient: mean (min-max) 1,2 (1 3) 2,2 (1 4) 1,5 (1 4) Proportion of female patients 53% 52% 53% 1.00 Age of the patients (years) : mean(min-max) 57 (28 75) 60 (40 77) 58 (28 77) 0.21 Disease duration (months) : mean(min-max) 31.2 (1 285) 33.8 (2 135) 32 (1 285) 0.83 Total number of admissions: c Reasons for admission to the hospital: Worsening of complaints 18% 87% 38% Planned therapy 60% 0 43% Complications 7% 0 5% 0.32 Difficult home situation 2% 4% 3% 0.50 Other 16% 17% 16% 1.00 a PCU Palliative Care Unit Chi-square test or Student s t-test c Because of 6 readmissions, there were 80 admissions, sometimes with multiple reasons, total>100%

4 354 van Leeuwen et al. Vol. 28 No. 4 October 2004 often mentioned in the decision-making discussion were pain, fatigue, bowel problems, and confusion of the patient. The most frequently mentioned considerations in the discussions were the chance that the patient s situation would improve, the patient s wish concerning treatment, the degree of suffering, and the chance that therapy would be successful (Table 2). The discussions about 40 interventions resulted in 16 decisions including 5 decisions to forgo potentially life-prolonging treatment and 1 decision to apply potentially life-shortening medication (Table 3). In 3 of the 16 decisions, the patient s wish had been taken into account; in 3 of the 16 decisions, the patient s wish was either unknown or inadequate; and in 10 discussions, medical considerations were decisive. None of the decisions concerned euthanasia or physician-assisted suicide although a request for euthanasia of one patient was mentioned in two discussions. The mentioned reasons for postponing decision-making in the other discussions were that possible decisions had to be further discussed with the patients or their close relatives first (n 3), the diseasecourse had to be awaited (n 11), a combination of these two (n 3), or that results of medical tests were not yet clear (n 6). Discussion Interventions with a possible influence on the length of life are an important and frequently Table 2 Considerations of Healthcare Professionals in 33 Discussions About Starting or Continuing Treatments That May Influence the Length of Life In favor of In favor of potentially potentially life-shortening life-prolonging decision decision The patient s wish 5 14 Close relatives wish 0 4 Amount of suffering 15 2 Quality of life 4 2 Physical condition 2 5 Chance of improvement Chance of therapy 10 2 being successful Expected disease course 11 0 Life expectancy 9 2 Medical complications 5 0 Other considerations 1 2 Table 3 Discussed Subjects and Outcome of 33 Discussions About Treatments (n 40) That May Influence the Length of Life Decisions No Yes Postponed Continue potentially life prolonging treatment(s)? (n 8) Start potentially life prolonging treatment(s)? (n 20) Apply potentially life shortening medications(s)? (n 12) a Total a Outcome of one discussion missing. discussed issue in multidisciplinary medical discussions about treatment for terminally ill patients. One-third of the discussions involved treatment(s) with a possible effect on the length of life of the discussed patients. This percentage cannot be translated into percentages of patients (see Groenewoud et al. 6 ) because we did not follow up individual patients. Although discussions about interventions with a possible influence on the length of life are frequent, more decisions are postponed than decisions are made. Obvious reasons seem to be that healthcare professionals prefer to await the disease course and to obtain more information about medical parameters and the patient s opinion. The decision-making process often takes more than one meeting and continues outside the multidisciplinary meetings. In the discussion about certain treatments, for instance the continuation of chemotherapy, decisions can be postponed because there is enough time to weigh the pros and cons between separate treatment periods. The postponement of decisions could imply that certain therapy options become irrelevant or are replaced by other options. The degree to which decisions with a potentially life-shortening effect actually induce a shortening of life remains uncertain. The potentially life-shortening effect of opioids is often doubted, 7,8 and chemotherapy does not always have a life-prolonging effect, especially when it is applied with a palliative intention. Furthermore, some patients were discussed several times with different decisions of which one could potentially prolong life and which could potentially shorten life.

5 Vol. 28 No. 4 October 2004 Considerations of Healthcare Professionals in Medical Decision-Making 355 Discussions about treatment with a possible influence on the length of life occurred more often in the palliative care unit (PCU) than in the medical oncology department. In the PCU treatment is usually aimed at symptom control and not specifically at fighting the tumor. In the medical oncology department the majority of patients do receive systemic therapy against the tumor, either to prolong life or to alleviate symptoms. The differences between the two departments are also reflected in the reason for admission, which is often planned therapy in the medical oncology department and often worsening of complaints in the PCU. The fact that care at the PCU is predominantly directed at palliation could make treatments with a possible life-shortening effect more acceptable to healthcare professionals and patients. The considerations mentioned by healthcare professionals suggest that medical treatment is discussed by healthcare professionals in relation to several questions: Is a treatment medically useful? How much is a patient suffering? Is this treatment going to improve the situation and what does the patient want? The healthcare professionals usually did not primarily address the question of prolonging life, but focused on the benefits and drawbacks of treatments for individual patients. Considerations in favor of a potentially life-shortening decision are most frequently the amount of suffering, the chance of improvement, the expected disease course, and the chance of therapy being successful. Considerations in favor of a potentially life-prolonging decision are most frequently the patient s wish, the chance of improvement, the physical condition, and the close relatives wish. If a discussed treatment was found medically futile, the patient s wish was not always important in the discussions. If the continuation or start of potentially life-prolonging therapies is a real option, the patient s wish seems to become an important consideration. It is important to note that we have observed and registered what happened during meetings but we have not met the patients or relatives nor have we registered the daily practice. Furthermore, there are no similar data available to make a comparison. We conclude that medical interventions with a possible effect on patient life span are often an issue in medical multidisciplinary decisionmaking for end-stage cancer patient. The considerations used by healthcare professionals weigh the disadvantages and benefits of each treatment option for each patient. Decisions to forgo potentially life-prolonging therapy are usually based on the expectation that no gain is to be expected from these therapies. Care is being taken to obtain as much information as possible about the chance of a positive outcome for a patient, before making a decision. If healthcare professionals are in doubt about such decisions, the patient s wish to start or continue treatments may be a decisive consideration. Acknowledgments Financial support was provided by the Dutch Ministry of Health, Welfare and Sport, and the Center for Development of Palliative Care, Rotterdam, The Netherlands. References 1. Onwuteaka-Philipsen BD, van der Heide A, Koper D, et al. Euthanasia and other end-of-life decisions in The Netherlands in 1990, 1995, and Lancet 2003;2:362(9381): Deliens L, Mortier F, Bilsen J, et al. End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey. Lancet 2000;356(9244): Nyman DJ, Sprung CL. End-of-life decision making in the intensive care unit. Intensive Care Med 2000;26(10): Bruera E, Willey JS, Palmer JL, et al. Treatment decisions for breast carcinoma: patient preferences and physician perceptions. Cancer 2002;94(7): Balmer CE, Thomas P, Osborne RJ. Who wants second-line, palliative chemotherapy? Psychooncology. 2001;10(5): Groenewoud JH, van der Heide A, Kester JG, et al. A nationwide study of decisions to forego lifeprolonging treatment in Dutch medical practice. Arch Intern Med 2000;160(3): Sykes N, Thorns A. Sedative use in the last week of life and the implications for end-of-life decision making. Arch Intern Med 2003;163(3): Morita T, Tsunoda J, Inoue S, et al. Effects of high dose opioids and sedatives on survival in terminally ill cancer patients. J Pain Symptom Manage 2001; 21(4):