Selection Process
Table 1 presents the search equations used and the number of references found in the various databases. The selection process using the databases made it possible to identify 1,170 articles, and 25 articles were identified from reading the bibliographical references in the included articles. Of the total 1,195 included articles, 26 articles were read in full, and 7 were ultimately selected (Fig. 1).
Table 1
Databases and Search Equations Used and the Results Obtained
| Databases | Search Equations | No. of articles Found |
| PubMed | 1. Advance directives AND cancer 2. ("Advance Directives"[Mesh]) AND « Neoplasms »[Mesh] 3. (("Advance Directives"[Mesh]) AND "Communication"[Mesh]) AND « Neoplasms »[Mesh] 4. ("Living Wills"[Mesh]) AND "Neoplasms"[Mesh] | 299 155 34 29 |
| Web of Science | 1. « Advance directives » AND « cancer patients » | 176 |
| Cochrane Library | 1. "advance directives" AND "cancer patients" 2. Advance directives AND cancer | 4 129 |
| EM Premium | 1. Advance directives | 367 |
| Public Health Data Bank | 1. "advance directives" AND "cancer patients" 2. Advance directives AND cancer | 3 199 |
General Characteristics of the Included Studies (Table 2)
Table 2
General Study Characteristics
| Article Title Author(s) Year | Study Type | Location Duration | Purpose of the Study | Methodology | Population |
| The impact of a tumor diagnosis on patients’ attitudes toward advance directives. Pfirstinger et al., 2014 | Observational Descriptive Cross-sectional Unicenter | Germany 1 year | Assess patients' knowledge of ADs, their preferences for a discussion partner and the most appropriate time to discuss them after diagnosis. | Questionnaire designed for the study including patient self-assessment and socio-medico-demographic data collection. | Patients admitted for consultation in the onco-hematology department Excluded patients = patients with bleeding disorders 525 questionnaires sent ◊ 394 returned and analyzed (response rate = 75%) |
| Respect for end-of-life wishes: feasibility study of information on the trusted person and advance directives. Vinant et al., 2014 | Interventional Prospective Unicentric | France 5 months | Explore the feasibility for patients with incurable cancer of an information intervention on legal devices related to respecting the person's will in medical decision-making at the end of life: trusted persons and DAs. Assess the impact of this information on patients' use of these devices. | Two semi-structured interviews at one month intervals with a 4-month follow-up by a doctor of the mobile palliative care team in pairs with an observing nurse, following a structured guide combining closed multiple-choice questions and open-ended questions. An accompanying person could be present during the interviews unless explicitly requested by the patient. | Patients hospitalized in a day hospital in the oncology department, suffering from lung or digestive cancer considered incurable. 103 patients admitted ◊ 77 eligible patients ◊ 23 patients included and 1st interview ◊ 20 patients 2nd interview performed. |
| Cancer patients and advance directives: survey of an hematology and oncology outpatient clinic Hubert et al., 2013 | Observational Descriptive Cross-sectional Unicenter | Germany 10 months | Evaluate the prevalence of ADs and the awareness and attitude of patients toward ADs | Standardized questionnaire designed specifically for the study, to be completed independently and anonymously, consisting of 22 questions broken down into 5 items | Patients admitted to the onco-hematology department, in consultation or day hospitalization No patients excluded 617 questionnaires distributed ◊ 503 questionnaires completed and returned (response rate of 81.5%) |
| The attitudes of Korean cancer patients, family caregivers, oncologists, and members of the general public toward advance directives Keam et al., 2013 | Observational Descriptive and comparative Cross-sectional Multicenter | South Korea 1 year | Examine and compare the attitude of patients with cancer, their caregivers, and oncologists, and that of the public toward advance directives Identify the factors favorably associated with ADs | Standardized questionnaire specially designed for the study consisting of 29 questions divided into 3 items For patients, their caregivers and oncologists: face to face interview with an interviewer trained in the subject and the questionnaire For the general public: telephone interview with a trained interviewer | 1,242 cancer patients 1,289 caregivers 303 oncologists 1,006 individuals chosen from the general public |
| Advance directives: prevalence and attitudes of cancer patients receiving radiotherapy Van Oorschot et al., 2012 | Observational Descriptive Cross-sectional Unicenter | Germany 39 months | Examine the prevalence of ADs, the attitude of patients toward ADs, and the factors influencing their drafting | Anonymous self-evaluation with a standardized questionnaire previously used in another study, comprised of 1 item on drafting the AD itself, 8 items on ADs, (answers to be given by the level of agreement), and 2 items on the illness and on sociodemographic characteristics | Cancer outpatients receiving radiation therapy 1,208 questionnaires distributed (ensuring that there are no duplicates) ◊ 658 questionnaires completed and returned (54.5%) ◊ 589 questionnaires analyzed (48.7%) |
| Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives Dow et al., 2010 | Observational Descriptive Cross-sectional Unicenter | United States 3 months | Reevaluate the paradoxes highlighted by the Lamont et al. study and evaluate their patterns | Semi-structured interview developed specially for the study, comprised of questions from the Lamont et al. study; questions on patient preferences with respect to discussion about ADs and the sensitivity of patients toward palliative care It was conducted by a master’s degree student who did not influence the participants in their questions Collection of socio-medical demographic data in the medical file. | Cancer patients hospitalized in the hemato-oncology department 117 patients admitted ◊ 85 patients who received an offer to participate ◊ 75 patients participated |
| What are cancer patients’ preferences about treatment at the end of life, and who should start talking about it? A comparison with healthy people and medical staff Sahm et al., 2005 | Observational Descriptive and comparative Cross-sectional Unicenter | Germany 3 months | Examine the patient with cancer’s wishes concerning end-of-life treatment and compare them to those of individuals in the control group (individuals in good health, nursing staff, and doctors) Answer the following questions: What is broadly acceptable in each group? Who should take the initiative in addressing the subject? What are the emotional obstacles that prevent patients from completing ADs? | Standardized questionnaire designed specifically for the study, completed anonymously, consisted of 29 questions Collection of socio-demographic data | Patients recently diagnosed or with advanced cancer, treated at the Oncological Clinic and Breast Cancer Center 100 patients 100 individuals in good health 100 nurses 100 doctors |
Of the 7 studies included, 6 were cross-sectional observational, and 1 was interventional. The most represented country was Germany, with 4 articles. We also included 1 French article, 1 American article, and 1 South Korean article. One study was from 2005, and 6 were published between 2010 and 2015. The duration of the studies varied from 3 months to 1 year. The patient samples studied included 23 to 1,242 patients. The average age of the patents ranged from 51 to 64 (where it was indicated). In 5 articles, the patients came from outpatient or day hospital consultations. One article was about hospitalized patients, and one article did not specify the source of the patients. Both hematological and solid tumor cancers and all stages of cancer were included.
With regard to methodology, 5 studies followed a quantitative method, 4 used specifically designed standardized questionnaires, and 1 study used a previously established questionnaire. Finally, 2 studies followed a qualitative method using semi-structured interviews; for the first one, a guide designed specifically for the study was followed, and for the other one, a guide derived from a previous study with added questions was followed.
With Whom Should Patients With Cancer Discuss ADs?
Six out of the seven articles included in this literature review provide answers to this question.
(1) Doctors
The 2 types of specialists most often mentioned as those who should address ADs with patients with cancer were the general practitioner and the oncologist. In 2 studies, the general practitioner was the most mentioned.
In a study by Pfistinger et al. [17], 231 out of 285 patients without ADs answered the item “preference for the consulting partner” (a multiple-choice question); 71% (163/231) chose the general practitioner (of which, 82% [133/163] chose the general practitioner exclusively [a single answer]), and 26% (60/231) chose the oncologist/hematologist (of which, 53% [32/60] exclusively).
A study by Hubert et al. [20] provides further information. In response to the question “who is your source of information about ADs?” (with several possible answers), 61% of patients with ADs (vs. 74% patients without ADs) chose the general practitioner, and 58.5% of patients with ADs (vs. 42.6% of patients without ADs) chose the hospital practitioner. For the question “who to choose to assist in their drafting?” (with multiple answers possible), 22.3% of patients with ADs chose the general practitioner, and 3.8% chose the hospital practitioner/specialist. Moreover, in response to the question “who is the knowledgeable individual when it comes to drafting your ADs?” (with multiple answers possible), 40.8% of patients with ADs chose the general practitioner, and 14% chose the hospital practitioner/specialist.
A study by Dow et al. [21] placed the oncologist in first place. When the 75 patients participating in the study were asked directly about whom they would prefer to discuss ADs, 48% (36/75) responded that they preferred the oncologist, and 34% (26/75) responded that they preferred the attending physician. It should be noted that 3% (2/75) chose their surgeon. This result is in line with a study by Vinant et al. [22] in which 2 out of 20 patients indicated that they preferred that this information be delivered by their oncologist. Likewise, in a study by Sahm et al. [23], to the question “who should initiate the discussion about drafting ADs?” 60.2% of patients answered “YES” to the suggestion of “the doctors,” and 39.8% answered “NO” (n = 98).
Alongside these data, the studies by Dow et al. [21] and Vinant et al. [22] have highlighted that some patients would prefer that the doctor who addresses the subject of ADs not be directly involved in the patient’s care. In the study by Dow et al. [21], when 75 patients were asked directly, “with whom would the patient prefer to discuss ADs?” 11% (8/75) chose the doctor who admitted the patient to the hospital. Of these same 75 patients, 87% (65/75) approved of the policy that the doctor admitting the patient to the hospital could discuss ADs with the patient during the admission process. Of the 70 patients included in the study who had not discussed ADs with their oncologist, 77% (54/70) did not want to have this discussion with their oncologist. However, ironically, of those patients, 87% (47/54) approved of the idea that the doctor admitting the patient to the hospital could discuss ADs with the patient during the admission process. Likewise, in the study by Vinant et al. [22], several individuals agreed that the professional required to give information about ADs should not be involved in his or her care. In contrast, in the study by Sahm et al. [23], in response to the question “who should initiate the discussion about drafting ADs?” regarding a doctor’s suggestion as a routine policy, 27% of respondents answered “YES” and 72.9% answered “NO” (n = 96).
It should be noted that, in the study by Hubert et al. [20], of the 412 patients with whom the oncologist did not discuss ADs, 52% (215/412) wanted the doctor to address this subject. In the study by Dow et al. [21], only 23% (16/70) of 70 patients that did not discuss ADs with the oncologist, wanted him or her to do so. In the study by Vinant et al. [22], some patients insisted that the professional prove their competence with regard to legal provisions and in the communication field. Finally, in the study by Dow et al. [21], when 75 patients were asked (in an open question) their reason for choosing a specific doctor (among the answer choices), 24% (18/75) believed that it was the doctor who knew the patient the best, 24% (18/75) believed that the doctor was the most practical person to choose or the person with whom they had the most interaction, 21% (16/75) believed that it was the doctor who had the most knowledge with regard to the evolution of their disease, 16% (12/75) believed that it was the doctor who had good presence, 9% (7/75) did not give a reason, and 5% (4/75) provided another reason.
(2) Patients’ relatives
This group of individuals was examined in only 2 studies. In the study by Hubert et al. [20], they were mentioned as individuals who were eligible to provide assistance in the drafting of ADs by 40.1% (first place) of patients who had issued ADs, whereas 93% (first place) mentioned them as knowledgeable individuals when it comes to drafting ADs. In the study by Sahm et al. [23], when patients were asked to answer whether their relatives should initiate the discussion of the drafting of the ADs, 44.2% of patients answered “YES” and 55.7% answered “NO” (n = 95). It should be noted that, in the study by Dow et al. [21], out of the 54 patients who did not want to discuss ADs with their oncologist, 22% believe that it was more of a family or personal decision.
(3) Legal professionals
Legal professionals were considered in 3 studies.
In the study by Pfistinger et al. [17], of the 285 patients without ADs, 8% (19/285) wanted to obtain legal advice. In a study by Van Oorschot et al. [24], for the item “the directives must be certified by a notary,” the 139 patients with an AD predominantly disagreed or strongly disagreed; the 314 patients without ADs but who were likely to obtain them in the future predominantly disagreed, and the 53 patients without an AD and who were unlikely to obtain them in the future predominantly disagreed or agreed. Finally, individuals in the notary/lawyer category were mentioned among those who should provide assistance in the drafting of ADs (25.5%) in the study by Hubert et al. [20].
(4) Other type of individuals
In 2 studies, 2 other types of individuals were considered: the clergyperson and the psychologist. In the study by Hubert et al. [20], for 3% of patients without an AD, a pastor is mentioned as a source of information. In the study by Sahm et al. [23], in response to the question “who would initiate the discussion about drafting ADs?” 11.5% of patients answered “YES” to the suggestion of “the clergy or psychologists,” and 88.4% answered “NO” (n = 95). Finally, in the study by Hubert et al. [20], with regard to the information source, the media is mentioned by 22% of patients with ADs and by 19.6% of patients without ADs.
When Is the Best Time to Discuss ADs With Patients With Cancer?
Four out of the seven articles included in this literature review provide answers to this question.
(1) During a state of “good health”
In 3 out of 4 studies, patients suggested that the most opportune time to address the subject of ADs was prior to the disease, “when one is in good health.” Vinant et al. [22] reported that out of 20 patients who evaluated the time for information about advance directives, 11 patients answered “in good health.” This finding is in agreement with those of the study by Pfistinger et al. [17], in which, out of 285 patients without ADs, 47% (135/285) believed that this discussion should take place independently of the neoplastic disease. In a South Korean study by Keam et al. [25], in a state of good health was the third most preferred time; of the 1,242 patients, 17.6% (217/1,242) believed that the drafting of ADs should take place while the patient was in good health. These findings were in line with those of the study by Sahm et al. [23], in which, in response to the question of “who should initiate the discussion about drafting ADs?”, for “only affected individuals,” 81.6% (n = 98) of respondents answered “NO” and 18.3% answered “YES.”
(2) During the diagnosis
In the study by Pfistinger et al. [17], during the diagnosis was the third most preferred time; 12% (33/285) of patients without ADs chose “after the cancer diagnosis news.” In the study by Keam et al. [25], during the diagnosis was the second most preferred time, chosen by 29.5% (364/1,242) of oncology patients. In the case of the study by Vinant et al. [22], 9 patients out of 20 suggested that the time of information about ADs take place “at the outset of the treatment for a serious illness.”
(3) During palliative status
Keam et al. [25] reported that 37.2% (459/1,242) of patients, which was the majority, in their study believed that this discussion should take place during terminal status, and 15.7% (193/1,242) believed it should take place when death was imminent. During “incurable disease” status was the least preferred time in the study by Pfistinger et al. [17]; only 9% (25/285) of patients in the study chose this option. Likewise, “when the treatments for the disease are no longer enough” and “upon reaching the end of life” were not chosen by patients in the study by Vinant et al. [22]. Of note, in the study by Pfistinger et al. [17], “when the patient requests it” was chosen by 33% of patients without an AD (93/285).