The results of this first descriptive, exploratory study regarding treatment decisions at the end-of-life of cancer patients in three Colombian hospitals showed the high frequency of not initiating treatment and withdrawal decisions. Of note, 23% of patients had palliative sedation prior to their death. According to the physicians, six patients (2%) requested explicitly to hasten death and for 2 of them, their wish was fulfilled.
While these figures cannot be considered representative for the situation in Colombia in general, they do provide some framework of frequency of certain decisions and of explicit requests to hasten death in this country. There are few studies documenting frequencies of distinct end-of-life decisions and even fewer specifically on cancer (16-18). To our knowledge, no reports with observed data on euthanasia and other types of decisions from South America are available, but there are data from some European countries: of all cancer-deaths in the Netherlands in 2010, 41% of patients had received intensified measures to alleviate pain or other symptoms and 28% had received ‘deep continuous palliative sedation’ . In 2007 in Flanders, Belgium and the UK this proportion of palliative sedation was 15% and 17%, respectively . As we did not provide a very clear definition of “palliative sedation” in our questionnaire, these numbers cannot be directly compared, however, our results (23% palliative sedation) are in line with these observations. In the Netherlands in 2010, of all sedated patients (including non-cancer deaths), 21% received artificial nutrition or hydration. This proportion was 2% among patients treated by family physicians, and went up to 54% among patients treated by medical specialists (54%) . It seems that the frequency of applying nutrition and hydration measures (50% of sedated patients) is similar in Colombia as most of our patients were treated by medical specialists. Cultural factors and a relative absence of advance care directives among most terminal cancer patients in Colombia may influence the frequencies of specific end-of-life care decisions. Frequencies may also be somewhat biased because of the overrepresentation of hospital deaths in our study combined with the very limited availability of end-of-life care and home-based palliative care in the country .
In our study, non-resuscitation and non-intubation decisions were very common. However, it is hard to know whether these decisions were intentions (in case a patient would be candidate for these interventions, would we apply them?) or if they were really executed.
A recent study performed at HUSI-Colombia reports that 70% of 832 patients who died in this hospital had a do-not-resuscitate order, based on the diagnosis and prognosis of the disease. Only 3.5% of these do-not-resuscitate orders were established as advance directives, and they were obeyed in 98.3% of cases . Advance care directives (AD) are formally regulated in Colombia, but their implementation suffers from several problems (see box 2 for details) . Our results show that few patients had advance directives, probably because of relatively little knowledge on the possibility of formulating ADs and lack of active information provision [22,23]. However, physicians often did not know whether or not patients had an AD and paternalistic attitudes, legal concerns and cultural and religious factors likely also play a role as was recently observed in a narrative review .
Box 2: The legal status advance care directives in Colombia
The rights of persons at the end of their lives are described in the Resolución 13437 of 1991, in Law 1737 of 2014 and the Resolución 1216 of the 20th of April 2015. Together, these describe the processes and information needed to express an advance directive (“living will”). In article 5 of the Law 1737 of 2014 the rights of patients in the last phases of their lives are described, including the right to sign advance directives, including the right to palliative care; the right to information; to a second opinion; to actively participate in the care processes. Right of children, adolescents and family members are also described. Article 5.4 is dedicated to the right to sign advance directives and described these as follows:
“Any capable, healthy or healthy person disease, in full use of their legal and mental faculties, with full knowledge of the implications that this right carries may sign an advance directive. Whoever subscribes such a document indicate his/her decisions regarding undergoing unnecessary medical treatments that impede a dignified life of the patient and in the event of death the decision regarding organ donation, should this person in the future be suffering from a terminal, chronic, degenerative and irreversible disease with a strong impact on quality of life.
When providing information as part of the medical attention process, physicians are obliged to explain these rights to the patients, including the potential contents of the living will, explanation that the patient can revoke this will at any moment and that neither family members nor members of the medical staff can modify this will when the patient can no longer decide for himself.
Medical-legal experts on the topic have summarized the following barriers to an adequate implementation of advance directives in Colombia: the scarce knowledge in the general population of the right to sign advance directives, the scarce training of healthcare professionals on the subject and the absence of national information systems or national registers of advance directives that are easy to consult by professionals to guide decision-making .
Decisions not to initiate treatment may be related to medical futility, for example, deciding against fourth-line chemotherapy or antibiotic treatments in an imminently dying patient. A study performed in one of the participating hospitals concluded that there had been “disproportional treatments” in 56% of cancer deaths that occurred in the hospital from 2016-2017, highlighting the need to establish limits on cancer treatments. Ideally, medical practice will progress to not consider death as a negative outcome, but rather focus on alleviating suffering and optimizing quality of life and death [25,26]. Medical doctors have indicated they have difficulties deciding when to suggest interruption of futile treatments, whereas decisions not to initiate such treatments are more easily made .
Decisions to withdraw or withhold “futile” or “non-beneficial” medical interventions should be discussed with the patient and relevant caregivers as problems may arise with patients persisting in their wish for “futile” treatments [10,27]. Ideally, all treatment decisions, including non-futile interventions, will involve open and sensitive communication to ensure the patient and their caregivers are adequately informed and understand the implications of the decision. Our data indicate very low levels of communication between physicians and patients on these topics and it seems that in Colombia these decisions are mostly made by the physician (“the doctor knows best”). The six patients who were administered drugs with the explicit intent to accelerate the end-of-life, and did not explicitly request to hasten death (technically considered homicide), could be an example of this. However, these six cases could also reflect confusion among both patients and physicians regarding ADs, legal procedures for euthanasia, discussing preferences for different treatment options and other topics surrounding end-of-life care . A qualitative study among healthcare professionals in Colombia showed that physicians sometimes feel an “unspoken desire” to accelerate death but do not really take this “desire” further. The same study also demonstrated the difficulty that physicians have in initiating these discussions and understanding the legal framework. Additionally, it showed that some physicians consider hastening the end of life, even without explicit patient requests, as an act of mercy . Our study found very little conversation takes place between physicians, patients and family members on the dying process and end-of-life decisions, a finding in line with previous studies from countries like the United States and Denmark . It is possible these findings represent a firmly-engrained paternalistic culture which persists among Colombian health professionals. It is also likely that physicians are not well prepared to talk with their patients about death and dying.
Although euthanasia has been depenalized in Colombia for a few years (box 1), the use of this procedure is heavily debated. Many physicians are concerned with the lack of access to palliative care services in the country, citing statements like the one from the European Association for Palliative Care, “If euthanasia is legalized in any society, there should be special attention to avoid the underdevelopment or devaluation of palliative care and conflict between legal requirements and the personal and professional values of physicians and other healthcare professionals” [10,29]. In Colombia, access to palliative care services is limited and mostly concentrated in larger cities [2,3], with many pain management specialists being considered palliative care specialists, and very limited attention paid in medical curricula to palliative care in general and end-of-life care specifically. Many healthcare institutions do not offer euthanasia, mostly for religious reasons (many hospitals are catholic institutions). Legally, they are obliged to help facilitate referral of patients to other institutions where euthanasia is performed and they should help initiate the formal process of applying for euthanasia. In reality, many patients may not have the energy and remaining life expectancy to initiate such a trajectory and additionally may not want to change institutions. Formally registered cases of euthanasia are rare: only 35 occurred in 2019 in a population of around 49 million inhabitants .
There were 19 instances in our study where the physician did not know if the patient had committed suicide. In a simultaneously executed qualitative study regarding the end-of-life decision making process among healthcare professionals, one oncologist mentioned when asked if assisted suicide had ever been requested (translated quote – [29,31]): "No, we have not had this, but I had a patient here who committed suicide […] - died after his second chemotherapy, at home, woke up dead ... we never knew the cause, but he had no complications… People don't die overnight without having a preamble of a complication. […] I think that there are people who commit suicide and I think that many people do it because they thought about euthanasia, but people do not access easily, so they commit suicide with an overdose or something." Similarly, this interviewed Colombian patient with end-stage disease mentioned having considered suicide : “Well, why am I going to live like this […], when it hurts too much. And I can't find ... I feel those things. In fact, the last time I confessed, it was because of that […] because I had bad intentions, bad thoughts. And I wanted to do it, I don't know why I didn't – Interviewer: Did you want to commit suicide? - Aha […], but I don't think I'm capable. I think I am not capable. It would be the easiest. But no, I don't know if I'm capable.”
The main limitation of the study is its sampling bias. The three participating institutions do, however, exhibit diversity in both the setting (urban versus rural and catholic versus non-Catholic) and socioeconomic classes served (private versus public hospitals with different levels of specializations offered). In order to guarantee anonymity, it was impossible to collect information regarding the specialization, age, years of experience and personal convictions of the participating physicians. It is possible that the deaths of some patients were qualified by the same physician but because of the complete anonymity and invitation procedures, this cannot be confirmed. In patients who had a physician response, the proportion that died in the hospital was higher than the national average (73% in our study versus 68.5% nationally ). We probably did not identify all deaths that occurred at home because the administrative system may be slower in such cases. Additionally, physicians may have been more prone to decline participation in the study for patients who did not die in the hospital as they would be less informed about those patients’ end-of-life issues. This overrepresentation of cases who died in hospitals probably increased the proportions of decisions which require hospital environments. Unfortunately, we did not have data on whether or not patients received high-intensity, invasive treatments and there is a lack of data on the character of decision-making processes (shared versus paternalistic). The high proportion of physicians who indicated not to have spoken with the patients ‘because the treatment was clearly the best for the patient’ (25%) or ‘it was not necessary to speak with the patient’ (17%) seems to indicate that the paternalistic approach is common.
Strengths of this study include the relatively high number of deceased patients and very high participation of invited physicians in the study, although physician non-participation may not have been random and data may have been different had all physicians agreed to participate. Some “non-socially desirable” answers were obtained, even some that breach regulations - which seems to indicate that the physicians felt free to report actual events rather than distort their answers to socially desirable ones.
 Defined in that study as invasive procedures, surgeries, complex medication, and costly interventions that began or took place during the final hospitalization period of the studied patients.