When Family Against Patient Wishes Towards End of Life

• Research
• Open Access
• Published: 10 September 2021

Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients

BMC Palliative Care book 20, Commodity number:140 (2021) Cite this article

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Abstract

Objectives

To draw communication regarding cancer patient's end-of-life (EoL) wishes past physicians and family caregivers.

Methods

An online questionnaire and phone-based surveys were performed with physicians and family caregivers respectively in iii pedagogy hospitals in Colombia which had been involved in the EoL care of cancer patients.

Results

For 138 deceased patients we obtained responses from physicians and family unit caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a chat, physicians indicated the treatment choice was "clearly the best for the patient" or that it was "not necessary to talk over treatment with the patient".

Twenty-six percentage of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%).

Conclusions

There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Advice strategies are urgently needed.

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Background

As Republic of colombia´southward population is speedily ageing, bloodshed patterns shift from being dominated by unnatural causes and communicable diseases towards dominance by prevalent chronic diseases [i]. The growing number of patients with chronic diseases has led to increasing consciousness in society and the medical customs that end-of-life (EoL) intendance for patients with chronic weather condition may involve complex decision-making processes [2].

One of the chief goals of palliative intendance and EoL care is to reduce suffering [3]. Suffering depends on very individual factors and therefore it is impossible to provide high-quality palliative care without constructive communication with patients, families, and caregivers regarding their needs. In controlling in this stage of life, communication may act every bit a facilitator or every bit an obstacle [4, 5]. Formal conversations about advanced care directives (ACD) are increasingly used in high-income settings and seem to improve the quality of life and quality of dying by prioritizing goals and reducing unnecessary treatments [six,7,8]. In improver, they assistance in the decision-making process and reduce difficulties in making such decisions for the healthcare professionals [8].

Growing literature supports that all-encompassing EoL discussions are associated with lower rates of aggressive interventions, lower health care costs, and better quality of EoL for patients [9, ten]. In dissimilarity, poor quality communication can consequence in futile continuation of life support, leading to futile, non-beneficial treatment measures that can exacerbate feelings of distress and frustration in patients, family members, and caregivers [xi, 12].

Patients study that several aspects of communication could exist improved during EoL care, such as the provision of information, emotional support, and being treated with respect [13]. Patients take reported that their wishes related to wellness care at the EoL are often non met [14,15,sixteen], frequently resulting in discordant care [17]. A lack of appropriate information provision from physicians and/or poor patient-physician communication may explicate these outcomes. In addition, in the main cultural groups in Republic of colombia, there is a strong taboo on talking about death and dying. This can lead to sub-optimal controlling processes, poor communication, potentially inappropriate care and symptom management [18] and suboptimal quality of life at the EoL and quality of dying [19]. In Colombia, religious dilemmas, ethical or legal concerns may as well play an important office [20].

In Colombia, palliative intendance has been regulated since 2014 and discussions regarding actively ending life have resulted in euthanasia regulation [21, 22]. It is unknown whether and how actively Colombian patients communicate with their physicians and caregivers regarding their wishes and needs. Previous studies indicate substantial levels of intensive cancer treatments very shut to the EoL [12], whilst physicians report little communication regarding EoL decisions with patients and caregivers [23], low rates of formally formulated ACD (personal advice), and a low level of integration between oncology and palliative care [24]. In this study, we aimed to describe noesis regarding cancer patient's wishes at the EoL by their treating physicians and family caregivers.

Methods

We designed an exploratory and descriptive cross-sectional survey including physicians and family caregivers of cancer patients at the EoL. The survey was delivered online for the physicians and by telephone for family caregivers of patients who attended one of three participating educational activity hospitals between May 2019 and May 2020: Instituto Nacional de Cancerología Bogotá (INC), Hospital Universitario San Ignacio Bogotá (HUSI), and Infirmary Universitario San José Popayán (HUSJ). All three accept specialized oncology services and palliative care teams. The get-go two are in Bogota, the INC being a specialized and public cancer referral hospital, attending over 7000 new patients per twelvemonth, and HUSI being a non-turn a profit, 3rd hospital. HUSJ is a public hospital in a Colombian province in the metropolis of Popayán, attending the urban population (> 300,000 inhabitants) and a largely rural area, including several indigenous populations.

Colombia has a mandatory "universal" national social insurance system, including two principal insurance structures. The first is contributory, which is financed by payroll contributions and secondly, a subsidized organization for the virtually impoverished population by full general revenue enhancement. Also, unique, and infrequent groups consist of specific authorities workers (public teachers, military machine, police, and state oil visitor) who have their schemes [25]. The iii participating hospitals attend patients affiliated with the different systems: HUSI mainly treats patients covered under the contributory scheme. INC and HUSJ treat patients under both systems and patients from unique and infrequent schemes.

Nurses and physicians identified oncological patients, notified the research team when a cancer patient with an estimated life expectancy of three months or less was seen at the outpatient clinic, emergency section or inpatient wards of the participating hospitals. This prognostic assessment was based on functional scales (ECOG Calibration of Performance Status or Karnofsky index) and progressive deterioration of the patients. When these patients deceased, a researcher obtained basic data and invited the attending physicians who had been closely involved in the patient'south EoL care during their last hospitalization stay, to participate within the study. The doctor was asked to forward the survey to a colleague if they felt the colleague had a ameliorate understanding of the decisions surrounding the patient. As a upshot of this process, it is possible that some physicians answered the survey for more than one patient.

Family caregivers of the deceased patients were identified based on the medical records (Colombian medical records specify a caregiver's data). At to the lowest degree two months subsequently the date of death of the patient, research administration from each hospital contacted the family members past telephone, explained the objectives of the study, and asked them if they would be willing to reply some questions regarding the care provided to the patient during the terminal phase of life. If they consented, an appointment for a telephone survey was made, and family caregivers provided exact informed consent, which was sound recorded. A substantial proportion of the Colombian population is functionally illiterate, specially amidst the elderly, where cancer and providing care for relatives with cancer are more than common [26], therefore we considered this method of information collection advisable and ethical for this sample.

The physicians received a link to the online survey, which focused on the characteristics of the EoL decision-making that preceded the death of the patient involved, details are provided elsewhere (encounter Additional file ane), [27,28,29]. When a decision had a potential life-shortening effect, physicians were asked if they had spoken to the patient and/or family caregivers regarding this potential effect of the treatment decision. Physicians were likewise asked if they knew the patient had an ACD.

Among the family caregivers, the telephone survey measured their level of involvement in the care of the patient, demographic information, and structured questions regarding the type of care received, information received by the healthcare providers, conversations with the healthcare providers, and if the patient had an ACD or had expressed wishes or preferences regarding treatment and other problems regarding the EoL (see Additional file 2). The survey contained a series of questions considered in the original CEQUEL instrument (Caregiver Evaluation of the Quality of End-Of-Life Care (CEQUEL) Musical instrument) [30]. Face up validity was evaluated by give-and-take both by the research squad and some healthcare providers; the research team provided iii rounds of written, individual feedback on the survey. The instrument was pilot tested, initially on a few anonymous volunteers, all bereaved family members of cancer patients, and in a later version on the first two participants, who did not show any difficulty in understanding hence no changes were needed. Three members of our research team (AA, LA, LIA) were trained by a psychologist in the process of the telephone survey to use a systematic structured procedure, east.m., how to requite further caption if a respondent does not know how to interpret the question.

The report protocol was approved by the research ethics committees at Pontificia Universidad Javeriana (number FM-CIE-0086-17) and NCI (Instituto Nacional de Cancerología, number INT-OFI-03581-2019). The physicians answered the survey questions anonymously – to farther guarantee anonymity, no information on specialization, age, sex activity, or years or experience of the participating dr. was nerveless. The physicians were informed that completing the survey implied consent to participate in the study. The survey included very sensitive questions regarding complex decisions, and information technology was essential to ensure the anonymity of participating physicians. Each participating establishment had a list of the coding and identifying data of the patients, kept by the enquiry assistants, who had no admission to the databases. This linking information was destroyed later the data had been nerveless to ensure anonymity; the researchers never had admission to the patients' or physicians' identifying information.

Family members were contacted by telephone to ask for their consent to participate in the written report and provided exact consent. We offered confidentiality of the data and guaranteed an anonymized analysis of their responses. The identification information were used to link the physician and family unit member data to guarantee that the agreement analysis occurred at the individual level. All methods were performed in accordance with the relevant local and international guidelines and regulations.

Analyses were conducted using SPSS Version 25 (IBM). General characteristics of the surveys were summarized using absolute frequencies, proportions, means, medians, and interquartile ranges (IQR). Absolute agreement (or proportion of overall understanding) between physicians and caregivers' responses was calculated for the post-obit three questions (1) Did the patient receive palliative care?; (2) Did the patient receive handling for pain or other symptoms?; and (3) Did the patient have any explicit advance care directive? This was calculated by calculation the number of affirmative and negative responses in which physicians and caregivers agreed, divided by the total number of ratings [31]. In addition, Cohen's kappa coefficient was calculated to the final question.

Results

We obtained responses from 261 physicians and 176 caregivers of 341 identified patients (response charge per unit 76.5 and 51.half-dozen % respectively); this led to 138 cases were both physicians and caregivers of the same patient participated. Most physicians (95 %) confirmed they were the treating physicians and most of them described the death of the patient every bit expected (n = 124, 90 %). All caregivers were family members: partner of the deceased (northward= 26, 19 %), parents (n = 6, 4 %), siblings (n = 23, 17 %), adult children (n = 72, 52 %), and other family members (n = 14, 10 %). One-half of the caregivers had lived with the patient; most had an educational level of high school or lower (66 %); 91 % described themselves every bit "very involved in the patient intendance".

The median time between death and the physicians completing the survey was nine days (IQR half dozen–20 days). The median time between expiry and the telephone survey with caregivers was 23.8 weeks (IQR 22.i–27 weeks).

Tabular array 1 presents the distribution of patients' full general characteristics – mean age was 61.5 years (SD 15.3), half were female, and virtually had died in hospital (86 %).

Table ane Full general characteristics of patients

Total size table

Physicians and caregivers agreed in most cases that the patient had received drugs to control hurting and other severe symptoms (physicians: n = 123, 89 %; caregivers northward = 125, 91 % - absolute agreement physicians – caregivers 83 % (Tabular array two).

Tabular array 2 Affirmative responses past physicians and caregivers and agreement between them regarding terminate-of-life questions

Full size table

In 44 cases (32 %), physicians reported that they spoke to the caregiver regarding the potential effect of hastening the patient'south death because of the decisions made in the last phase of life. In eleven of those cases (25 %), not postponing the patient's death was requested past caregiver. In 24 cases (17 %), physicians responded that they spoke directly with the patient about the potential hastening of their death because of the intervention. Iii patients requested to hasten their EoL, but their requests were not fulfilled. Physicians indicated they agreed regarding the non-utilize of resuscitation manoeuvres at the EoL with the patient in 26 cases, with patients' family unit members in 80, and other caregivers in xiv cases. There was disagreement on this matter in 9 cases (twenty %).

In the absence of a conversation about interventions at the EoL, physicians indicated mostly they had not discussed this because the handling option was "clearly the best for the patient" (n = 30, 22 %) or that it was "not necessary to discuss handling with the patient" (n = xviii, 13 %).

Few caregivers (northward = 36, 26 %) indicated that someone from the medical team spoke with the patient almost medical handling preferences during the last calendar week of life; caregivers reported no conversation at all in 71 patients (51 %) and, in 12 patients (9 %) they did not know. In 23 of the 36 patients who had a conversation (67 %), caregivers felt that the information provided by the medical team was unclear or incomplete. Caregivers perceived those medical interventions had prolonged patients´ life in 46 cases, and in 32 of these, the caregiver felt that this prolongation had increased the patient's suffering.

Physicians reported eight patients had ACD (half dozen %), of which three were formally formulated. For most cases (n = 90, 65 %), physicians reported patients did not have any ACD and in 40 cases (29 %) physicians did non know if the patient had whatsoever ACD. Caregivers of 36 patients indicated they knew the patient had their wishes described in an ACD (26 %) (ten formally, 26 informally formulated). Most caregivers (n = 74, 54 %) indicated that their relative had no ACD or formally formulated requests, and 28 reported they did not know if the patient had formulated their wishes (20 %). The proportion of absolute agreement betwixt physicians and caregivers, on whether the patient did have an ACD or not was 34 % (Table 2) and Cohen'due south kappa coefficient was 0.xviii. Most of the patients of whom physicians knew they had an ACD were affiliated to the contributive insurance regime (seven out of viii patients, 88 %). Too, caregivers of patients of the contributive system were more than aware nigh the existence of the ACD of their relative (21 out of 36, 59 %).

Discussion

Our results evidence a lack of communication and awareness among physicians and even family caregivers regarding the patient'southward EoL preferences. Our study blueprint cannot elucidate the reasons behind this phenomenon, just it is likely that neither physicians nor family caregivers had explicit discussion with the patient regarding preferences, wishes and fears regarding the EoL [two].

The low agreement (34 %) between physicians and caregivers regarding the existence of ACD point that, even though only a minority of terminally ill cancer patients had expressed such directives, the advice of those directives was limited – often either a physician or a caregiver (29 and 20 % respectively) (or perhaps both) were not aware if any directive or request existed. Most patients in our study died in hospital, and therefore information technology would be expected they were in close contact with their physicians, all the same the cognition regarding ACD was still low; probably because physicians and family caregivers are frequently more than focused on physical symptom management, leaving attention to feelings and desires as lower priority.

The increase in technological possibilities of treatment and care has led, in many countries, to regulation regarding patients' rights to refuse treatment or accept shared decision-making on whether life-sustaining therapies will be used in their care [32]. As palliative and EoL care aim to relieve suffering and optimize quality of life, it is important to know if and how patients suffer and what matters to them. Shared decision making requires effective and empathic communication betwixt formal and informal caregivers and the patients [2, 33]. It has been shown that patients with advanced cancer prefer early and open advice near EoL topics [34]. Among other outcomes, poor communication leads to significant misunderstandings by patients and caregivers regarding the nature and seriousness of the disease, handling, and prognosis.

Our results show a general lack of such conversations: physicians demonstrate a generally paternalistic attitude, where they could decide on what would be best for the patients, which has been commonly noted in similar scenarios [35]. Caregivers were on occasion unaware if patients had an ACD. Additional data from a qualitative written report -executed in parallel with this written report- suggests that family caregivers oftentimes felt that either they or the patients were non optimally heard, or that their preferences were not taken completely into account [36]. Studies have shown a broad variability of knowledge most ACD formulated by patients, and it is clear that in that location are big disparities in ACD completion, highlighting the need for pedagogy virtually their role in facilitating EoL decisions [37]. One of the ofttimes reported reasons for not having an ACD is lack of awareness of this choice [37,38,39,xl]. It is possible that this played a significant function in our population and thus highlights the demand for pedagogy about their role in facilitating EoL care. Finally, other studies accept elucidated some potential determinants of ACD cognition including older age, educational level, and college income [37].

Written report limitations include the potential of pick bias: physicians may have been more than prone to decline participation for patients who died outside of hospital, as they would be less informed about those patients' EoL bug. Similarly, family caregivers´ own experiences may have influenced their decision to participate. Time betwixt decease of the patient and survey of the caregiver (approximately 24 weeks) may have introduced retrieve bias. However, the time frame of 2–12 months has been shown by previous enquiry to allow bereaved caregivers to call up their experience yet giving sufficient fourth dimension to the participant for grieving [41] and considers the ethical concerns when approaching bereaved caregivers [42]. Telephone surveys were considered necessary considering a substantial proportion of the Colombian population is functionally illiterate. It was impossible to attain some caregivers, either because of erroneous telephone numbers (7 %) or because they never answered the telephone (22 %); 91 % of caregivers who were reached decided to participate. Finally, absolute agreement of responses between physicians and caregivers is informative and useful, but it does non distinguish between agreement on positive ratings and agreement on negative ratings. However, for this question, we as well calculated Cohen's kappa coefficient resulting in a very low agreement value.

Accelerate care planning conversations assistance individuals to practice autonomy and brand informed decisions about their care. People who lack the noesis to have EoL concerns or discussions or near the role of ACDs in facilitating EOL decisions, may represent potential targets for intervention. Patient's psychosocial experience, symptom direction, treatment decisions, and quality of life are associated with communication in cancer care that should exist considered and prioritized in whatsoever agenda [43] including EoL care in low- and middle-income countries.

There are several educational resource than tin can exist adapted, adapted, and culturally contextualized to the Colombian surroundings aimed to help facilitate older adults to make futurity healthcare decisions [44]. Educational resources may support the process of accelerate care planning, even so available resources are not universally accepted, and they are under-utilized in clinical practice. Recently in Republic of colombia, various healthcare insurance companies began actively promoting the formulation of written ACD which is an important step. Even so, this process lacks a clear communication strategy regarding the beingness of ACD and their potential function, this is therefore an important area for comeback in the state.

Similarly, in that location are some non-governmental organization initiatives to facilitate access to legally compliant advance directives for patients and caregivers (DescLAB initiative) [45]. Unfortunately, these resources are accessible generally through the Internet, limiting access to those with difficulties in connectivity and digital literacy.

Conclusions

Our results suggest a lack of open conversations regarding EoL matters in patients with advanced cancer, with their physicians and family caregivers. Preparation in and implementation of effective communication strategies regarding EoL care for patients, physicians, and caregivers are urgently needed in Republic of colombia.

Availability of data and materials

The datasets used and/or analysed during the electric current study are available from the corresponding author on reasonable request.

Abbreviations

EoL:

End-of-life

ACD:

Accelerate care directive

INC:

Instituto Nacional de Cancerología Bogotá

HUSI:

Hospital Universitario San Ignacio Bogotá

HUSJ:

Hospital Universitario San José Popayán

IQR:

Interquartile range

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Acknowledgements

We are very grateful for the participation of all anonymous physicians who took the time to respond the questionnaires and caregivers to answer the phone-based surveys. We also thank the following people who have been closely involved in the blueprint of the projection and made this work possible: Carlos Gómez-Restrepo, Nelcy Rodríguez, Carolina Wiesner, Fabián Leal, Raúl Murillo, Fritz Gempeler and Eduardo Díaz.

Funding

This work was supported by Minciencias, in the framework of the "777–2017 Convocatoria para proyectos de ciencia, tecnología e innovación en Salud 2017", project CT-826-2018 - Decisiones médicas al final de la vida en pacientes oncológicos en Colombia". Minciencias (Colombian government inquiry funding torso) had no role in the pattern of the study and collection, analysis, and interpretation of information of in writing the manuscript.

Writer information

Affiliations

1. Department of Anesthesiology, Universidad del Cauca, Popayán, Colombia

   Jose A Calvache

2. Department of Anesthesiology, Erasmus MC Academy Medical Center Rotterdam, Rotterdam, The Netherlands

   Jose A Calvache

3. Department of Clinical Epidemiology and Biostatistics, Pontificia Universidad Javeriana, Bogotá, Colombia

   Socorro Moreno & Esther de Vries

4. Reader in Chronic Illness, School of Nursing and Midwifery, Queen'southward University Belfast, Belfast, UK

   Gillian Prue

5. Professor of Cancer and Palliative Intendance, School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK

   Joanne Reid

6. Academic Unit of Supportive Intendance, Section of Oncology, School of Medicine and Biomedical Sciences, University of Sheffield, Royal Hallamshire Hospital, Sheffield, UK

   Sam H Ahmedzai

7. Clinical Epidemiology, Pontificia Universidad Javeriana, Bogotá, Colombia

   Angelica Arango-Gutierrez

8. National Cancer Constitute, Bogotá, Colombia

   Liliana Ardila

9. Departamento de Fonoaudiología, Universidad del Cauca, Popayan, Republic of colombia

   Lucia I Arroyo

10. MPH programme Public Health, Pontificia Universidad Javeriana Cali, Cali, Colombia

    Lucia I Arroyo

Contributions

EdV, SM, JAC conceptualized the study; EdV, SM, JAC developed the methodology and belittling program. AA, LA, LIA undertook information collection and preliminary analysis assisted by JAC, EdV. GP, JR, SA contributed to final assay and interpretation of the data. EdV, JAC, GP, JR drafted the manuscript, all others revised. All authors accept read and approved the final manuscript.

Corresponding writer

Correspondence to Joanne Reid.

Ethics declarations

Ethics approval and consent to participate

The study protocol was approved past the research ethics committees at Pontificia Universidad Javeriana (number FM-CIE-0086-17) and NCI (Instituto Nacional de Cancerología, number INT-OFI-03581-2019). The physicians answered the questionnaire anonymously. No data on specialization, historic period, sex, or years or feel of the participating doc was collected. Caregivers were contacted by phone to ask for their consent to participate in the written report and explained that their data would be managed confidentially, and that anonymized analysis of their responses was guaranteed. The case number of the deceased patient was used to link the doctor and caregiver information to guarantee that the agreement analysis occurred at the individual level. Informed consent was obtained from all physicians and caregivers included in the written report. All methods were performed in accordance with the relevant local and international guidelines and regulations.

Consent for publication

Not required.

Competing interests

None declared.

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Calvache, J.A., Moreno, Southward., Prue, One thousand. et al. Cognition of end-of-life wishes by physicians and family caregivers in cancer patients. BMC Palliat Intendance 20, 140 (2021). https://doi.org/x.1186/s12904-021-00823-1

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• Received: 04 May 2021

• Accustomed: 15 July 2021

• Published: 10 September 2021

• DOI : https://doi.org/10.1186/s12904-021-00823-1

Keywords

• Stop of life
• Cancer
• Communication
• Advance Directives
• Decision Making

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