Implementation of Assisted Dying in Catalonia: Impact on Professionals and Development of Good Practices. Protocol for a Qualitative Study

Abstract

The approval of the Spanish Law for the Regulation of Euthanasia in March 2021 entails a profound social change that has direct implications for professional practice at all levels of care. There is no information available about the experiences of the professionals participating in the process of implementing the law in our country, nor any guide as to what might represent good practices in euthanasia in the context of the Mediterranean countries. Due to the complexity of the concepts often associated with assisted dying processes (such as suffering, dignity and moral compass), it is essential that systematic and detailed research be conducted on how professionals understand their experiences of euthanasia, and that it be conducted during the initial stages. We intend to carry out a qualitative study with a constructionist orientation to gain insight to the social constructs underlying professionals’ initial experiences. It consists of a series of in-depth interviews conducted in two phases: the first being exploratory and the second phenomenological. Sampling will be purposive and substantiated and have the following variation criteria: profession, age, and gender. Participants will be recruited through the Guarantee and Review Commission of Catalonia, and the scope of the study is all of Catalonia. We expect the participation of 31 professionals. The research will be conducted by a multidisciplinary team with the direct participation of researchers from different levels of healthcare, university research centers and civil society through all phases of the study. The expected results are: (a) A detailed description of the experiences of the professionals involved in the implementation of the law; and (b) The identification of the foundations for a guide to good practices in euthanasia in the Mediterranean setting.

Keywords

assisted dying euthanasia physician-assisted suicide healthcare providers healthcare provider experiences practice guideline qualitative research

Background

With the 2021 approval of the Organic Law for the Regulation of Euthanasia (LORE), Spain became the first Mediterranean country to decriminalize assisted dying (AD) (Organic Law 3/2021, 24 March, 2021). This new legal framework entails a significant social change that directly impacts healthcare professionals, who have thus been called upon to rethink their care practice (Busquet-Duran et al., 2022; Sandham et al., 2022; Regional Euthanasia Review Committees, 2021). There is extensive literature on the influence of the euthanasia process on those participating in it. Nurses describe it as a “serious and difficult process”, both on a practical and organizational level, as well as emotionally and morally (Denier et al., 2010). They report it being characterized by strong ambivalence (Bellens et al., 2020; Denier et al., 2009; Pesut et al., 2020). For their part, doctors may feel pressured (de Boer et al., 2019) and often report experiencing conflicting emotions (Evenblij et al., 2019). There are many ethical, legal, regulatory, clinical, personal, and political implications entangled in this new understanding of the medical practice. As with any major social change, there are a wide variety of arguments supporting maximalist positions (Altisent et al., 2021).

Death and dying are legally regulated, shared social phenomena. According to the canon of death, a good death is painless, taking place at home, swiftly, while sleeping or unconscious and surrounded by loved ones, having reached old age (Marí-Klose & Miguel, 2000) yet still enjoying some minimum standards of quality of life (Fernández et al., 2022). This does vary, of course, depending on the sociocultural framework in question, as can be clearly seen various pieces of legislation. Assisted dying has neither been regulated in the same way, nor does it include the same practices in Belgium, Holland and Oregon. Euthanasia is allowed in Belgium and Holland while physician-assisted suicide (PAS) is rare. Conversely, in Oregon, euthanasia is not allowed, but PAS is (Velasco Bernal & Trejo-Gabriel-Galan, 2022). In Spain, there is broad support for euthanasia. It dwindles however when PAS is laid on the table, thus suggesting that suicide in any form is banned from the collective imagination (Serrano-del-Rosal & Heredia-Cerro, 2018). On the other hand, in more traditionally liberal societies, PAS is accepted while euthanasia is not because supra-individual institutions (whether governmental or religious in nature) bend more to individual freedom (Serrano-del-Rosal & Heredia-Cerro, 2018). The fact that the term “suicide” does not appear in the LORE at any time is illustrative. Yet another example is that while nurses are recognized as professional evaluators and providers of assisted dying in Canada (Dierckx de Casterlé, 2006; Pesut et al., 2020), the LORE does not even mention the role of these professionals. Upon digging deeper into these sociocultural differences, it becomes clear that there are significant gender differences in how people face death (Yakimchuk, 2019). Women are more likely to provide advance directives and request that life-prolonging treatments be discontinued (Antolín et al., 2014; Fletcher et al., 2013; Saeed et al., 2018; Smets et al., 2012), while men are more greatly associated with continuous palliative sedation and euthanasia (van Deijck et al., 2013). This can be explained in part by differences in coping mechanisms as imposed by gender norms (Dalmau-Bueno et al., 2022; Gaston & Mitchell, 2005; Seifart et al., 2020; Skulason et al., 2014; Ullrich et al., 2019).

Only by understanding these different styles and traditions can a phenomenon such as assisted death be approached. It should be noted that there is evidence of non-medical AD practices in rural areas. One such example would be the “terminator” in Sardinia, a figure who ends the lives of those in agony (Murgia, 2020). AD used to be performed as a clandestine and illegal practice in Spain: an online survey completed by 390 nurses in Andalusia in 2010 revealed that 22.6% believed that cases of euthanasia had occurred and 11.4% believed assisted suicide had (Tamayo-Velázquez et al., 2012).

Under the LORE, the clinical criteria for eligibility for AD are having a serious and incurable disease or experiencing serious, chronic and disabling suffering (Table 1). The law is accompanied by “Good Practice Guidelines” based mainly on the Belgian and Dutch experiences (Ministry of Health, 2021). It envisages various guarantees, including the creation of a Guarantee and Review Committee (CGiA) in each autonomous community. These committees are to function as collegiate bodies comprising health professionals and lawyers who verify cases before AD is carried out, resolve claims and subsequently double-check that the AD was provided in compliance with the law. In short, the LORE is radically protective, requiring the approval of three doctors and a lawyer and establishing a double verification system, with checks before and after the act, thus making it particularly convoluted (Table 2).

Table 1.

Criteria for eligibility for AD.

1	Age of majority (≥18 years)
2	Spanish nationals, foreigners with residence, or those who have been in Spain for 12 months
3	Be in a situation to which euthanasia may apply
	- Serious, chronic and disabling suffering (art.3.b): Defined as “a situation of limitations that directly affect the individual’s physical autonomy and activities of daily life, such that he/she cannot take care of him/herself, as well as the ability to express and maintain relationships, and which are associated with constant and intolerable physical and mental suffering for the individual, with the certainty or high probability that these limitations will persist over time without the possibility of a cure or discernible improvement. This may sometimes involve absolute dependence on technological support.”
	- Serious and incurable disease (art.3.c): that which “due to its nature causes constant and unbearable physical and mental suffering without the possibility of any relief which the individual considers tolerable, with a limited life prognosis, in a context of progressive fragility.”
4	Be in possession of all the medical information regarding the diagnosis, treatments, potential access to palliative care
5	Be competent and conscious when making the request
	In the case of incompetence, an anticipated request in an advance directives document or living wills is valid
	- Basic state law 41/2002 on patient autonomy (art. 11)
	- Catalan law 21/2000 on patient autonomy (art. 8)
6	Modalities
	-The direct administration of a substance to the patient by the competent healthcare professional
	-The prescription or supply to the patient by the healthcare professional of a substance for self-administration

Table 2.

Legal steps for Assisted Dying.

1	Submit first application to the head doctor
2	Process of deliberation between doctor and patient
3	Submit second application to the head doctor
4	Reports from the head doctor and consulting doctor
5	Transfer information to the CGiA
6	Two members of the CGiA verify the facts. If they approve it, the AD care service is authorized
7	The head doctor and patient agree on the day and the patient chooses the place and service modality
8	The service is provided
9	The documentation is sent to the CGiA for subsequent review

The Catalan model establishes a multidisciplinary CGiA and the creation of a euthanasia support office (the PRAM Office) and a network of regional references (Decree-law 13/2021, 2021; Departament de Salut. Generalitat de Catalunya, 2021). The CGiA is composed of three professionals from the field of medicine, three from law, two from nursing, one from psychology, one from social work and a representative of civil society. The PRAM Office performs the administrative functions necessary for the continuity and development of the CGiA’s remit. For their part, the regional, primary care and hospital references support the doctors and consultants responsible in both the procedure and the more administrative aspects.

The truth is that professionals are faced with a new practice that exposes substantial differences between natural and assisted death (Pesut et al., 2019) and which requires an explicit and implicit collective effort to generate “good practices” (Table 3). It is crucial to understand what happens to professionals who participate in the provision of AD when they themselves are in the process of constructing the meaning of this new clinical responsibility on a professional, personal, and social level (Pesut et al., 2020; Piili et al., 2022; Quill, 2018). The data show that between 15 and 20% of professionals experience an adverse and significant personal impact and may be left with an “indelible mark” (Kelly et al., 2020; Snijdewind et al., 2018). This jeopardizes the spirit of the law, which posits that the new service must be provided in a compassionate and ethical way, that everyone involved receive support and that no harm be done to staff or patients; it also stipulates that AD cannot become the sole option, but that quality palliative care must remain available (Cuervo-Pinna, 2021; Gerson et al., 2019; Ho et al., 2021).

Table 3.

Differences between natural and planned death.

	Natural death	Planned death
Speed of death	Slow (“agony”, struggle)	Quick
Predictability of when it will occur	Uncertain	Exact time
Awareness	Altered level of consciousness (drowsiness, stupor, coma, delirium)	Lucidity (able to talk until the end)
Patient control	No	Yes (choice of where, with whom, and how)
Departure plan	No (“as God intends it”)	Yes (“what the patient wants”)
Presence of professionals	No (only rarely)	Yes
Communication	Adjusted to the patient’s current state and changing needs	Direct and verifiable: (Proper reasoning, right moment)
Language	Metaphorical	Direct, petitioning, deep, open
Attention focused on the family	+	+++ anxiety and anticipatory grief
Event sensitive to relationships	+	+++ peremptory

Health, illness and death are social constructs with deep-rooted meanings and symbolism. In our setting, AD is a new, little known or studied phenomenon with a strong subjective burden. It is therefore appropriate to conduct research with a social constructionist perspective and qualitative methodology to better understand these emerging meanings in the current Catalan context since:

1. Death and dying bear an enormous subjective burden. A qualitative study conducted among Dutch doctors objectifies the tension that may arise between the doctor’s own opinions on death and dying and the patient’s preferences (Ten Cate et al., 2017). Quantitative studies have demonstrated that the reasons for requesting euthanasia are strictly subjective (pointless suffering and loss of dignity) (Jansen-van Der Weide et al., 2005), that the desire to advance death is related to spiritual and psychosocial discomfort (Busquet-Duran et al., 2021; Stolz et al., 2017; Van Den Berg et al., 2021), and that the greatest challenge reported by doctors regarding euthanasia is assessing whether or not the suffering expressed by the patient is unbearable (Buiting et al., 2008). In our setting, nearly 10% of patients with advanced cancer receiving palliative care verbally express the desire for AD (Busquet-Duran et al., 2021; Güell et al., 2015).

2. AD involves meanings created by the people, groups and community involved which, in turn, are embedded in a set of social relationships and a specific sociopolitical context. For example, different religions vary in how they deal with this process (Sobrevia & Torradeflot, 2014), and the European Association for Palliative Care is openly against it (Kelly et al., 2020). It is necessary to understand the perceptions, meanings, and behaviors of the various actors involved. Accordingly, Timoty Quill studied the limits professionals set when it comes to meeting patients’ perceived needs, as well as their moral compass (Quill, 2018), given the deep displacement of values (Beuthin et al., 2018; Dholakia et al., 2022; Lavoie et al., 2015; Stevens, 2006). One qualitative study shows the difficulty that Dutch doctors experience when they go from being seen as caregivers involved in the patient’s health to simple interpreters of the law, facing requests for euthanasia based on non-medical reasons (Snijdewind et al., 2018), such as mental health issues (Evenblij et al., 2019; Pronk et al., 2021; Verhofstadt et al., 2022) or when the patient is not competent at the time of the request (Kouwenhoven et al., 2015; Variath et al., 2022).

3. The participation of professionals directly involved in the phenomenon is essential. A systematic review of mixed studies concludes that euthanasia decision-making should be framed within the patient-professional-family triad (Roest et al., 2019) and that the approach to shared decision-making should be more contextualized (Gómez-Vírseda et al., 2020). Another recent qualitative study conducted in Canada shows how the legal possibility of AD leads to profound changes in expectations and how palliative care units work (Gómez-Vírseda et al., 2020). Ultimately, the aim is to understand the experience in order to design intervention programs that take it into account and incorporate self-care for the professionals involved. Although AD is requested in few cases (Emanuel et al., 2016), it can have a huge impact on professionals (Kelly et al., 2020).

In Spain, news stories are being published about how both patients and family members, as well as professionals, are dealing with the euthanasia process (Macpherson, 2021, October 28). One recent study points to the need for training and emotional support for healthcare professionals (López-Matons et al., 2021). However, we are not aware of any research that offers systematically collected evidence or data on the experiences of professionals involved in euthanasia in Spain or on what good practices should look like for euthanasia in Mediterranean countries.

Explanation and Justification of Method

Aim

This study aims to analyze and understand the full range of experiences and implications of health professionals when providing care to someone who chooses AD, as well as to identify the foundations for good practices in this area.

Specific Aims

• Analyze the main ethical dilemmas of health professionals in Catalonia participating in the provision of AD.

• Understand professional and personal experiences related to the implementation of the euthanasia process in Catalonia.

• Identify and define key elements for good practices from the perspective of the professionals involved in the AD process during the first year of implementation in Catalonia.

Method

We propose an exploratory qualitative study with a constructionist focus, based on a series of in-depth interviews with professionals involved in the euthanasia process (Eatough & Smith, 2008; Langdridge, 2007). The study period is from June 2022 to June 2024 in Catalonia.

Recruitment and Participant Selection

The study population comprises health professionals involved in the euthanasia process. The exclusion criterion is having serious emotional trauma (diagnosed or otherwise) that makes reliving traumatic experiences unadvisable.

Participants will be recruited and selected using snowball as well as maximum variation sampling (Moser & Korstjens, 2018) as regards the sample criterion of involvement in the process of implementing the law. Recruitment will be performed in agreement with and through the CGiA of Catalonia. Moreover, the final selection of participants will be done taking into account the variables of professional profile, gender and age. Selection will be purposive, substantiated, and deliberate to collect a wide diversity of experiences and implications linked to the phenomenon under study. To this end, participants in the exploratory interviews will be asked to suggest any profile or individuals they consider should be included in a second phase sample. Also, professional profile (medicine, nursing, psychology, pharmacy, social work, administrative support and law), setting (hospital, primary care, impatient rehabilitation facility, administration), sector (public, private), area (urban, rural), region (Barcelona, Girona, Tarragona, Lleida), experience (satisfactory, non-satisfactory) will be considered segmentation criterion, and the following variables will be taken into account as sample variation criteria: age, gender (including non-binary), and religion. An estimated sample of 31 participants is expected, distributed throughout the field work as follows:

Phase 1: Exploratory

Five in-depth interviews with key informants: These would be participants belonging to the CGiA of Catalonia since they represent most of the professional profiles involved in the process (medicine, nursing, social work, psychology and law) and have an overall view of the implementation of the law throughout the whole territory. These interviews would be aimed at identifying the main elements to consider in subsequent interviews, corroborating the various professional profiles to be interviewed, and gaining access to them for the following phases.

Phase 2: Phenomenological insight

In this phase, sample size will be determined by data saturation. The initial plan is to conduct 26 in-depth, iterative interviews. Although there is a tendency to opt for even smaller samples in phenomenological studies to avoid generating a general cacophony that obscures the richness of each participant’s voice (Bartholomew et al., 2021), this study has an exploratory focus of the phenomenon and a broad approach to the category of “professional”. It is therefore necessary to include a wide diversity of profiles and, simultaneously, anticipate the possibility of interviewing participants more than once (Malterud et al., 2016). We thus hope to capture a holistic and dense description of the experience of professional involvement in the euthanasia process. In any case, the interviews will be conducted sequentially so that the principles of qualitative research (flexibility, openness and iteration) can be implemented and the point of data saturation can be clearly and rigorously established.

The initial plan is to conduct seven medicine, seven nursing, three psychology, two pharmacy, three social work, two administrative support and two legal interviews. Two subphases are foreseen:

a. The first includes the seven professional profiles identified to gain a general perspective of the main themes structuring the experience of professionals.

b. And the second phase includes the remaining interviews, until reaching the discourse variation sought out and data saturation.

Data Handling

Experiences, opinions and perceptions will be collected through semi-structured, in-depth interviews. Informed consent will be obtained. Audio will be recorded with a digital voice recorder and the data will be stored locally. The interview questions are aimed at establishing a dialogue from which in-depth and contextualized information can be extracted, without inciting or forcing answers (Additional file 1).

The interview scripts will be approved by the research team and tested and revised during the first phase of the study. Modifications and corrections will be made as necessary; the results of these first interviews will not be dismissed. The interviews will be transcribed, eliminating any identifying traces, and transferred to the Atlas.ti Web software for qualitative analysis (which can be worked on collaboratively). Participants from the first phase will be invited to contact the researchers for a second interview if they have more to contribute.

The interviews will last approximately 40–90 minutes and will be conducted at the participants’ workplace or in a room at the Barcelona Medical Association.

The project is expected to last 22 months, with varying involvement of the participating entities and coordinated by the Principal Investigator and his research group, with the support of a contracted professional technician with advanced knowledge of qualitative methodologies.

The research team is expected to meet monthly to monitor the project and agree on the emerging design following the schedule (Table 4).

Table 4.

Project chronogram.

Month	Aim	Team	Responsible party
1	Form the project coordination and monitoring group	UAB, DMD, IGTP & IDIAP	PI
1–4	Compose the theoretical framework and projected design	UAB, DMD, IGTP & IDIAP	PI
5–6 & 9	Recruitment	IDIAP	Contracted technician
6–7	Phase 1 of fieldwork: Exploratory	IDIAP, UAB	Contracted technician
8–9	Transcription, thematic analysis and sample review	IDIAP, UAB & IGTP	Contracted technician
10–13	Phase 2 of fieldwork: Insight	IDIAP, UAB	Contracted technician
14–16	Transcription, phenomenological analysis and data return	IDIAP, UAB, DMD & IGTP	Contracted technician
17–18	Comparison with participants	IDIAP, UAB, DMD & IGTP	PI
19–21	Write up and publish results	DMD, IGTP IDIAP, UB	PI
22	Public presentation of results	IDIAP	PI

Note. UAB: Universitat Autònoma de Barcelona; DMD: Right to Die with Dignity Association; IGTP: Germans Trias i Pujol Institute Foundation for Health Sciences Research; IDIAP: Jordi Gol University Institute for Primary Care Research; PI: Principal Investigator.

Data Analysis

In the first phase, a reflective thematic analysis based on Braun and Clarke will be conducted (Braun & Clarke, 2006). In the second phase, the standard interpretative phenomenological analysis procedure will be followed (Pietkiewicz & Smith, 2014; Willig, 2008):

1. Multiple readings of the transcription and making notes

2. Identification of emerging themes

3. Clustering the themes

To ensure the analytical process is rigorous, the researchers will triangulate their work, independently reading each interview as transcribed verbatim from audio recordings and then sharing their codifications with each other to reach a consensus. Lastly, the interviewees will participate in triangulation (member checking) both individually and at a collaborative analysis workshop, where a narrative summary of their stories will be presented for comparison and validation.

Rigor

The interviewers will use established qualitative standards to ensure reliability and rigor, in accordance with Thorne et al. (2004). The research team will approve the scripts, drawing on the external and expert perspective of the institutions participating in the project. It should be noted that describing the experiences inevitably involves the perspective of the research team, which is clearly positioned in favor of facilitating the exercise of this new right. Therefore, it will be necessary to manage the biases of those in a dual position: researcher and member of the study population. Credibility will be enhanced by asking participants to review the preliminary findings and involving them in the analysis and creation of proposals and documents.

Ethics

All the researchers and collaborators undertake to strictly observe the Declaration of Helsinki. Participants must sign an informed consent form and will be identified exclusively by code. Only the data controller will have access to the list of participant names, date of inclusion and study codes. All the information obtained will be treated confidentially, in compliance with Spanish Organic Law 3/2018, of December 5, on personal data protection and guarantee of digital rights, and Regulation (EU) 2016/679 of the European Parliament and of the Council, of 27 April 2016, on the protection of natural persons with regard to the processing of personal data and on the free movement of such data (GDPR):

1. Identification of the data and the subjects processing them: Qualitative data (opinions, etc.) will be obtained from interviewees voluntarily once consent has been granted and in the context of the interview. If, in the course of the conversation, data that may identify the participants be provided, the research team will anonymize them by removing them from the file using an audio editing program (Audacity) or replacing them with pseudonyms or generic categories (for example, “city”) when transcribing the interview. If the transcription is commissioned to people outside the research team, they will be provided with the pseudo-anonymized data and a confidentiality agreement will be signed.

2. Identification and legitimate basis of the data processing: The variables required to conduct the study will be obtained directly from the project participants with their consent, in accordance with the provisions of articles 6.1.a) and 9.2.a) of the GDPR.

3. Data processing tools: Data will be stored locally on the computers of the health centers and on the Cercles platform of the Government of Catalonia. Transcriptions and coding will be performed with locally installed software.

4. International data transfers: International data transfers are not foreseen.

5. Identification of processing that may pose a significant risk to the rights and freedoms of research participants: No processing that may pose a risk to the rights or freedoms of the participants will be applied. The interviews will be recorded and transcribed but the content of the recordings will be stored securely (password protected and accessible only to members of the research team) for 2 years, at which point it will be deleted. Participants will be able to review their interview transcripts.

We follow the ethical criteria for medical research proposed by Emanuel: scientific and social interest, scientific validity, fair subject selection, a favorable risk-benefit ratio, independent review, informed consent and respect for subjects (Berenguera-Ossó et al., 2014; Emanuel et al., 2000).

Discussion

Expected Results

We expect to identify key themes such as:

1. Positive reinforcement from within the profession by providing comprehensive care, championing patient choice and supporting a good death as defined by the patient.

2. A pioneering and innovative spirit and a sense of involvement and belonging in responding to the many emerging questions posed by the new legislative scenario.

3. A clear personal, ethical, and emotional impact related to the underlying values and practice of AD.

In terms of good practices, the following aspects may stand out:

1. The importance of technical and pharmacological skills

2. The need for good communication skills

3. The importance of teamwork and coordination between care levels

4. The need for specific psychological support

5. The need to create safe spaces for ethical and moral debate.

Transferability, Applicability And Opportunity Of The Proposal

The results will be transferable to the entire Mediterranean region and, especially, the other autonomous communities of Spain, where the law has been implemented in very different ways. For example, in the first year of implementation, 60 applications were accepted in Catalonia, while only 11 were accepted in Andalusia, a region with one million more inhabitants (Linde, 2022; Sanz, 2022).

At the level of healthcare, the results may contribute to the collective construction of good practices to understand and provide AD (Pesut et al., 2020) and help remodel and empower the practice of palliative care, from a systemic understanding revolving around death and dying (Sallnow et al., 2022).

At the level of training, the emotional and ethical nature of AD will have to be fundamentally addressed. The results will have implications for mandatory minimum education and could become the basis for developing training packages based on experience and co-design.

Professional and institutional leaders will need to be at the forefront to ensure that professionals understand and feel prepared to respond to the situations that patients and their families present, bearing in mind that dynamic changes are likely to occur as different aspects of the legislation are questioned (Carnevale, 2013; Vargas-Celis & Concha-Méndez, 2019).

At the policy level, our findings will likely suggest that we need to continue to advocate for patient choice at the end of life, promoting compassionate, informed and non-judgmental patient care, while making a major effort to improve access to quality palliative care and adequate support for the staff involved in implementing it.

In addition to scientific publications and congresses, we plan to disseminate the results to various professional, patient and citizen associations, as well as through press releases, the media, and policy briefs.

Lastly, the methodology and results may serve as a basis for future research since they paint a picture of the initial situation.

Supplemental Material

Supplemental Material - Implementation of Assisted Dying in Catalonia: Impact on Professionals and Development of Good Practices. Protocol for a Qualitative Study

Supplemental Material for Implementation of Assisted Dying in Catalonia: Impact on Professionals and Development of Good Practices. Protocol for a Qualitative Study in Maria Verdaguer, Núria Vallès-Peris, Xavier Busquet-Duran, Eduard Moreno-Gabriel, Patricia Beroiz, Antonia Arreciado Marañón, Maria Feijoo-Cid, Miquel Domènech, Lupicinio Íñiguez-Rueda, Glòria Cantarell and Pere Torán-Monserrat in International Journal of Qualitative Methods

Footnotes

Author Notes

Two of the authors, Xavier Busquet-Duran and Patricia Beroiz are references for euthanasia in their area of work, the first in primary health care and the second in a third-level hospital. Glòria Cantarell was president of the DMD Association and is currently the vice president.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The research project was awarded a grant from the Strategic Plan for Research and Innovation in Health (PERIS) 2016-2020, aimed at primary care research, of the Department of Health of the Government of Catalonia, ref. SLT021/21/000046. The funder is not involved in designing aspects of the study, but the study proposal underwent competitive peer review through a formal peer-review process.

Ethical Approval

Ethics approval for the study has been received by the IDIAP Jordi Gol Independent Ethics Committee (IEC/IRB). Project ID: 22/094-P. Participants who have been recruited for this study have provided consent in writing.

Data Availability

The datasets used and analyzed during the study will be available from the corresponding author upon reasonable request.

ORCID iDs

Maria Verdaguer

Núria Vallès-Peris

Xavier Busquet-Duran

Eduard Moreno-Gabriel

Patricia Beroiz

Antonia Arreciado Marañón

Maria Feijoo-Cid

Miquel Domènech

Lupicinio Íñiguez-Rueda

Pere Torán-Monserrat

Supplemental Material

Supplemental material for this article is available online.

Appendix

References

Altisent

Nabal

Muñoz

Ferrer

Delgado-Marroquín

M. T.

Alonso

(2021). Eutanasia: ¿es esta la ley que necesitamos? Atención Primaria, 53(5), 102057. https://doi.org/10.1016/j.aprim.2021.102057

Antolín

Jiménez

González

Gómez

Sánchez

Miró

(2014). Characteristics and use of advance directives in a tertiary hospital. Revista Clínica Española (English Edition), 214(6), 296–302. https://doi.org/10.1016/j.rceng.2014.02.002

Bartholomew

T. T.

Joy

E. E.

Kang

Brown

(2021). A choir or cacophony? In: Sample sizes and quality of conveying participants’ voices in phenomenological research 2, (14). https://doi.org/10.1177/20597991211040063

Bellens

Debien

Claessens

Gastmans

Dierckx de Casterlé

(2020). “It is still intense and not unambiguous.” Nurses’ experiences in the euthanasia care process 15 years after legalisation. Journal of Clinical Nursing, 29(3–4), 492–502. https://doi.org/10.1111/jocn.15110

Berenguera-Ossó

Fernández-de-Sanmamaed-Santos

M. J.

Pons-Vigués

(2014) Escuchar, Observar y comprender. Recuperando la narrativa en las Ciencias de la Salud (1, p. 224). Institut Universitari d’Investigació En Atenció Primària Jordi Gol.

Beuthin

Bruce

Scaia

(2018). Medical assistance in dying (MAiD): Canadian nurses’ experiences. Nursing Forum, 53(4), 511–520. https://doi.org/10.1111/nuf.12280

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Buiting

H. M.

Gevers

J. K. M.

Rietjens

J. A. C.

Onwuteaka-Philipsen

B. D.

van der Maas

P. J.

van der Heide

van Delden

J. J. M.

(2008). Dutch criteria of due care for physician-assisted dying in medical practice: A physician perspective. Journal of Medical Ethics, 34(9), Article e12. https://doi.org/10.1136/jme.2008.024976

Busquet-Duran

Manresa-Domínguez

J. M.

Tura-Poma

Bosch-de-la-Rosa

Moragas-Roca

Torán-Monserrat

(2021) El deseo de adelantar la muerte en cuidados paliativos domiciliarios. Busca tu siete por ciento (95). Revista Española de Salud Pública. https://www.mscbs.gob.es/biblioPublic/publicaciones/recursos_propios/resp/revista_cdrom/VOL95/ORIGINALES/RS95C_202110138.pdf

10.

Busquet-Duran

Martínez-Losada

Bosch de la Rosa

Torán-Monserrat

(2022). Assisted dying and bad conscience, or why I can’t be against euthanasia. Atencion Primaria, 54(6), 102304. https://doi.org/10.1016/j.aprim.2022.102304

11.

Carnevale

F. A.

(2013). Confronting moral distress in nursing: Recognizing nurses as moral agents. Revista Brasileira de Enfermagem, 66(spe), 33–38. https://doi.org/10.1590/S0034-71672013000700004

12.

Cuervo-Pinna

M. A.

(2021). La Ley de la Eutanasia: Una oportunidad para el desarrollo de los cuidados paliativos en España. Medicina Paliativa. https://doi.org/10.20986/medpal.2021.1310/2021

13.

Dalmau-Bueno

Saura-Lazaro

Busquets

J. M.

Bullich-Marín

García-Altés

(2022). Advance directives and real-world end-of-life clinical practice: A case–control study. BMJ Supportive and Palliative Care, 12(e3), Article e337-e344. https://doi.org/10.1136/bmjspcare-2020-002851

14.

de Boer

M. E.

Depla

M. F. I. A.

den Breejen

Slottje

Onwuteaka-Philipsen

B. D.

Hertogh

C. M. P. M.

(2019). Pressure in dealing with requests for euthanasia or assisted suicide. Experiences of general practitioners. Journal of Medical Ethics, 45(7), 425–429. https://doi.org/10.1136/medethics-2018-105120

15.

Decree-law [Decret llei] 13/2021 . (2021). de 22 de juny, pel qual es regula la Comissió de Garantia i Avaluació de Catalunya i el Registre de professionals sanitaris objectors de consciència, en desenvolupament de la Llei orgànica 3/2021, de 24 de març, de regulació de l’eutanàsia (p. 8443). DOGC. https://www.gencat.cat/dogc.

16.

Denier

Dierckx de Casterlé

de Bal

Gastmans

(2009). Involvement of nurses in the euthanasia care process in flanders (Belgium): An exploration of two perspectives. Journal of Palliative Care, 25(4), 264–274. https://doi.org/10.1177/082585970902500404

17.

Denier

Dierckx de Casterlé

de Bal

Gastmans

(2010). It’s intense, you know.” Nurses’ experiences in caring for patients requesting euthanasia. Medicine, Health Care and Philosophy, 13(1), 41–48. https://doi.org/10.1007/s11019-009-9203-1

18.

Departament de Salut. Generalitat de Catalunya (2021). Model per al desplegament de la prestació de l’eutanàsia. Direcció General de Planificació en Salut. https://canalsalut.gencat.cat/web/.content/_Vida_saludable/Etapes_de_la_vida/final-vida/eutanasia/model-desplegament-prestacio-eutanasia.pdf

19.

Dholakia

S. Y.

Bagheri

Simpson

(2022). Emotional impact on healthcare providers involved in medical assistance in dying (MAiD): A systematic review and qualitative meta-synthesis. BMJ Open, 12(7), Article e058523. https://doi.org/10.1136/bmjopen-2021-058523

20.

Dierckx de Casterlé

(2006). Nurses’ views on their involvement in euthanasia: A qualitative study in flanders (Belgium). Journal of Medical Ethics, 32(4), 187–192. https://doi.org/10.1136/jme.2005.011783

21.

Eatough

Smith

J. A.

(2008). Interpretative phenomenological analysis. In Willig

Stainton Rogers

(Eds), The sage handbook of qualitative research in psychology. Sage.

22.

Emanuel

E. J.

Onwuteaka-Philipsen

B. D.

Urwin

J. W.

Cohen

(2016). Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. JAMA, 316(1), 79. https://doi.org/10.1001/jama.2016.8499

23.

Emanuel

E. J.

Wendler

Grady

(2000). What makes clinical research ethical? Jama, 283(20), 2701–2711. https://doi.org/10.1001/jama.283.20.2701

24.

Evenblij

Pasman

H. R. W.

Van Delden

J. J. M.

Van Der Heide

Van De Vathorst

Willems

D. L.

Onwuteaka-Philipsen

B. D.

(2019). Physicians’ experiences with euthanasia: A cross-sectional survey amongst a random sample of Dutch physicians to explore their concerns, feelings and pressure. BMC Family Practice, 20(1). https://doi.org/10.1186/s12875-019-1067-8

25.

Evenblij

Pasman

H. R. W.

van der Heide

van Delden

J. J. M.

Onwuteaka-Philipsen

B. D.

(2019). Public and physicians’ support for euthanasia in people suffering from psychiatric disorders: A cross-sectional survey study. BMC Medical Ethics, 20(1), 62. https://doi.org/10.1186/s12910-019-0404-8

26.

Fernández

Serra-Sutton

Garcia-Altés

(2022). Estudi qualitatiu per conèixer què és una bona mort Experiències i vivències de pacients , familiars i professionals. In: Agència de Qualitat i Avaluació Sanitàries de Catalunya. Departament de Salut. Generalitat de Catalunya. https://aquas.gencat.cat/web/.content/minisite/aquas/publicacions/2022/estudi_qualitatiu_bona_mort_aquas2022.pdf

27.

Fletcher

Prigerson

H. G.

Paulk

Temel

Finlay

Marr

McCorkle

Rivera

Munoz

Maciejewski

P. K.

(2013). Gender differences in the evolution of illness understanding among patients with advanced cancer. Journal of Supportive Oncology, 11(3), 126–132. https://doi.org/10.12788/j.suponc.0007

28.

Gaston

C. M.

Mitchell

(2005). Information giving and decision-making in patients with advanced cancer: A systematic review. Social Science and Medicine, 61(10), 2252–2264. https://doi.org/10.1016/j.socscimed.2005.04.015

29.

Gerson

S. M.

Bingley

Preston

Grinyer

(2019). When is hastened death considered suicide? A systematically conducted literature review about palliative care professionals’ experiences where assisted dying is legal. BMC Palliative Care, 18(1). https://doi.org/10.1186/s12904-019-0451-4

30.

Gómez-Vírseda

De Maeseneer

Gastmans

(2020). Relational autonomy in end-of-life care ethics: A contextualized approach to real-life complexities. BMC Medical Ethics, 21(1), 1–14. https://doi.org/10.1186/s12910-020-00495-1

31.

Güell

Ramos

Zertuche

Pascual

(2015). Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care. Palliative and Supportive Care, 13(2), 295–303. https://doi.org/10.1017/S1478951514000121

32.

Norman

J. S.

Joolaee

Serota

Twells

William

(2021). How does medical assistance in dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers. Palliative Care and Social Practice, 15, 263235242110459. https://doi.org/10.1177/26323524211045996

33.

Jansen-van Der Weide

M. C.

Onwuteaka-Philipsen

B. D.

Van Der Wal

(2005). Granted, undecided, withdrawn, and refused requests for euthanasia and physician-assisted suicide. Archives of Internal Medicine, 165(15), 1698–1704. https://doi.org/10.1001/archinte.165.15.1698

34.

Kelly

Handley

Kissane

Vamos

Attia

(2020). “An indelible mark” the response to participation in euthanasia and physician-assisted suicide among doctors: A review of research findings. Palliative and Supportive Care, 18(1), 82–88. https://doi.org/10.1017/S1478951519000518

35.

Kouwenhoven

P. S.

Raijmakers

N. J.

van Delden

J. J.

Rietjens

J. A.

van Tol

D. G.

van de Vathorst

de Graeff

Weyers

H. A.

van der Heide

van Thiel

G. J.

(2015). Opinions about euthanasia and advanced dementia: A qualitative study among Dutch physicians and members of the general public. BMC Medical Ethics, 16(1), 7. https://doi.org/10.1186/1472-6939-16-7

36.

Langdridge

(2007). Phenomenological psychology: Theory, research and method. Pearson Prentice Hall.

37.

Lavoie

Godin

Vézina-Im

L.-A.

Blondeau

Martineau

Roy

(2015). Psychosocial determinants of physicians’ intention to practice euthanasia in palliative care. BMC Medical Ethics, 16(1), 6. https://doi.org/10.1186/1472-6939-16-6

38.

Linde

(2022, June 22). Un año de eutanasia en España: 172 casos y una gran desigualdad entre las comunidades autónomas. El País. https://elpais.com/sociedad/2022-06-22/un-ano-de-eutanasia-en-espana-172-casos-y-una-gran-desigualdad-entre-las-comunidades-autonomas.html

39.

López-Matons

Terribas i Sala

Costas-Muñoz

(2021). Ley de regulación de la eutanasia: Perspectiva de los profesionales asistenciales. Gaceta Sanitaria. https://doi.org/10.1016/j.gaceta.2021.08.008

40.

MacPherson

(2021, October 28) “Así han vivido los médicos las primeras eutanasias: "Me he reconcialiado con mi profesión”. La Vanguardia. https://www.lavanguardia.com/vida/20211028/7820332/primeras-eutanasias-reconciliado-profesion.html

41.

Malterud

Siersma

V. D.

Guassora

A. D.

(2016). Sample size in qualitative interview studies. Qualitative Health Research, 26(13), 1753–1760. https://doi.org/10.1177/1049732315617444

42.

Marí-KloseMiguel

M. J. M.

(2000). El canon de la muerte. Política Y Sociedad, 35, 115–143. https://revistas.ucm.es/index.php/POSO/article/view/POSO0000330115A

43.

Ministry of Health [Ministerio de Sanidad] (2021). Manual de buenas prácticas en eutanasia (1–93). Administración de Documentos y Archivos. https://www.mscbs.gob.es/eutanasia/docs/Manual_BBPP_eutanasia.pdf

44.

Moser

Korstjens

(2018). Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. European Journal of General Practice, 24(1), 9–18. https://doi.org/10.1080/13814788.2017.1375091

45.

Murgia

(2020). L’acabadora. Proa: A tot vent.

46.

Organic Law [Ley orgánica] 3/2021 (2021). De 24 de marzo, de regulación de la eutanasia. BOE-A-2021-4628 (pp. 34037–34049). https://www.boe.es/eli/es/lo/2021/03/24/3

47.

Pesut

Thorne

Greig

Fulton

Janke

Vis-Dunbar

(2019). Ethical, policy, and practice implications of nurses’ experiences with assisted death: A synthesis. Advances in Nursing Science, 42(3), 216–230. https://doi.org/10.1097/ANS.0000000000000276

48.

Pesut

Thorne

Schiller

Greig

Roussel

Tishelman

(2020). Constructing good nursing practice for medical assistance in dying in Canada: An interpretive descriptive study. Global Qualitative Nursing Research, 7, 233339362093868. https://doi.org/10.1177/2333393620938686

49.

Pesut

Thorne

Storch

Chambaere

Greig

Burgess

(2020). Riding an elephant: A qualitative study of nurses’ moral journeys in the context of medical assistance in dying (MAiD). Journal of Clinical Nursing, jocn.15427. https://doi.org/10.1111/jocn.15427

50.

Pietkiewicz

Smith

J. A.

(2014). A practical guide to using Interpretative Phenomenological Analysis in qualitative research psychology. Psychological Journal, 20(1), 7. https://doi.org/10.14691/cppj.20.1.7

51.

Piili

R. P.

Louhiala

Vänskä

Lehto

J. T.

(2022). Ambivalence toward euthanasia and physician-assisted suicide has decreased among physicians in Finland. BMC Medical Ethics, 23(1), 71. https://doi.org/10.1186/s12910-022-00810-y

52.

Pronk

Willems

D. L.

van de Vathorst

(2021). Do doctors differentiate between suicide and physician-assisted death? A qualitative study into the views of psychiatrists and general practitioners. Culture, Medicine and Psychiatry, 45(2), 268–281. https://doi.org/10.1007/s11013-020-09686-2

53.

Quill

(2018). Dutch practice of euthanasia and assisted suicide: A glimpse at the edges of the practice. Journal of Medical Ethics, 44(5), 297–298. https://doi.org/10.1136/medethics-2018-104759

54.

Regional Euthanasia Review Committees (2021). Annual report 2020. https://english.euthanasiecommissie.nl/the-committees/documents/publications/annual-reports/2002/annual-reports/annual-reports

55.

Roest

Trappenburg

Leget

(2019). The involvement of family in the Dutch practice of euthanasia and physician assisted suicide: A systematic mixed studies review. BMC Medical Ethics, 20(1), 23. https://doi.org/10.1186/s12910-019-0361-2

56.

Saeed

Hoerger

Norton

S. A.

Guancial

Epstein

R. M.

Duberstein

P. R.

(2018). Preference for palliative care in cancer patients: Are men and women alike? Journal of Pain and Symptom Management, 56(1), 1–6. https://doi.org/10.1016/j.jpainsymman.2018.03.014

57.

Sallnow

Smith

Ahmedzai

S. H.

Bhadelia

Chamberlain

Cong

Doble

Dullie

Durie

Finkelstein

E. A.

Guglani

Hodson

Husebø

B. S.

Kellehear

Kitzinger

Knaul

F. M.

Murray

S. A.

Neuberger

O’Mahony

Wyatt

(2022). Report of the lancet commission on the value of death: Bringing death back into life. The Lancet, 399(10327), 837–884. https://doi.org/10.1016/S0140-6736(21)02314-X

58.

Sandham

Carey

Hedgecock

Jarden

(2022). Nurses’ experiences of supporting patients requesting voluntary assisted dying: A qualitative meta-synthesis. Journal of Advanced Nursing, 78(10), 3101–3115. https://doi.org/10.1111/jan.15324

59.

Sanz

(2022). Desigualdades en el acceso a la prestación de la ayuda a morir. Dmd. Derecho a Morir Dignamente, 88, 6–11.

60.

Seifart

Riera Knorrenschild

Hofmann

Nestoriuc

Rief

von Blanckenburg

(2020). Let us talk about death: Gender effects in cancer patients’ preferences for end-of-life discussions. Supportive Care in Cancer, 28(10), 4667–4675. https://doi.org/10.1007/s00520-019-05275-1

61.

Serrano del Rosal

Heredia Cerro

(2018). Actitudes de los españoles ante la eutanasia y el suicidio médico asistido/Spanish Attitudes towards Euthanasia and Physician-assisted Suicide. Revista Española de Investigaciones Sociológicas. https://doi.org/10.5477/cis/reis.161.103

62.

Skulason

Hauksdottir

Ahcic

Helgason

A. R.

(2014). Death talk: Gender differences in talking about one’s own impending death. BMC Palliative Care, 13(1), 8. https://doi.org/10.1186/1472-684X-13-8

63.

Smets

Rietjens

J. A.

Chambaere

Coene

Deschepper

Pasman

H. R.

Deliens

(2012). Sex-based differences in end-of-life decision making in flanders, Belgium. Medical Care, 50(9), 815–820. https://doi.org/10.1097/MLR.0b013e3182551747

64.

Snijdewind

M. C.

van Tol

D. G.

Onwuteaka-Philipsen

B. D.

Willems

D. L.

(2018). Developments in the practice of physician-assisted dying: Perceptions of physicians who had experience with complex cases. Journal of Medical Ethics, 44(5), 292–296. https://doi.org/10.1136/medethics-2016-103405

65.

Sobrevia

Torradeflot

(2014). Atenció religiosa al final de la vida: Coneixements útils sobre creences i conviccions. http://governacio.gencat.cat/web/.content/afers_religiosos/documents/atencioreligiosaalfinaldelavida.pdf

66.

Stevens

K. R.

(2006). Emotional and psychological effects of physician-assisted suicide and euthanasia. The Linacre Quarterly, 73(3), 203–216. https://doi.org/10.1080/20508549.2006.11877782

67.

Stolz

Mayerl

Gasser-Steiner

Freidl

(2017). Attitudes towards assisted suicide and euthanasia among care-dependent older adults (50+) in Austria: The role of socio-demographics, religiosity, physical illness, psychological distress, and social isolation. BMC Medical Ethics, 18(1), 71. https://doi.org/10.1186/s12910-017-0233-6

68.

Tamayo-Velázquez

M.-I.

Simón-Lorda

Cruz-Piqueras

(2012). Euthanasia and physician-assisted suicide. Nursing Ethics, 19(5), 677–691. https://doi.org/10.1177/0969733011436203

69.

Ten Cate

van Tol

D. G.

van de Vathorst

(2017). Considerations on requests for euthanasia or assisted suicide; a qualitative study with Dutch general practitioners. Family Practice, 34(6), 723–729. https://doi.org/10.1093/fampra/cmx041

70.

Thorne

Kirkham

S. R.

O’Flynn-Magee

(2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3(1), 1–11. https://doi.org/10.1177/160940690400300101

71.

Ullrich

Grube

Hlawatsch

Bokemeyer

Oechsle

(2019). Exploring the gender dimension of problems and needs of patients receiving specialist palliative care in a German palliative care unit - the perspectives of patients and healthcare professionals. BMC Palliative Care, 18(1), 59. https://doi.org/10.1186/s12904-019-0440-7

72.

van Deijck

R. H. P. D.

Hasselaar

J. G. J.

Verhagen

S. C. A. H. H. V. M.

Vissers

K. C. P.

Koopmans

R. T. C. M.

(2013). Determinants of the administration of continuous palliative sedation: A systematic review. Journal of Palliative Medicine, 16(12), 1624–1632. https://doi.org/10.1089/jpm.2013.0173

73.

Van Den Berg

Van Thiel

Zomers

Hartog

Leget

Sachs

Uiterwaal

Van Wijngaarden

(2021). Euthanasia and physician-assisted suicide in patients with multiple geriatric syndromes. JAMA Internal Medicine, 181(2), 245–250. https://doi.org/10.1001/jamainternmed.2020.6895

74.

Vargas-Celis

Concha-Méndez

C. A.

(2019). Moral distress, sign of ethical issues in the practice of oncology nursing: Literature review. Aquichan, 19(1), 1–16. https://doi.org/10.5294/aqui.2019.19.1.3

75.

Variath

Peter

Cranley

Godkin

(2022). Health care providers’ ethical perspectives on waiver of final consent for medical assistance in dying (MAiD): A qualitative study. BMC Medical Ethics, 23(1). https://doi.org/10.1186/s12910-022-00745-4

76.

Velasco Bernal

Trejo-Gabriel-Galan

J. M.

(2022). Leyes de eutanasia en España y en el mundo: Aspectos médicos. Atención Primaria, 54(1). https://doi.org/10.1016/J.APRIM.2021.102170

77.

Verhofstadt

Audenaert

Mortier

Deliens

Liégeois

Pardon

Chambaere

(2022). Concrete experiences and support needs regarding the euthanasia practice in adults with psychiatric conditions: A qualitative interview study among healthcare professionals and volunteers in Belgium. Frontiers in Psychiatry, 13. https://doi.org/10.3389/fpsyt.2022.859745

78.

Willig

(2008). Introducing qualitative research in psychology: Adventures in theory and method. McGraw-Hill.

79.

Yakimchuk

(2019). Making sense of gender inequities in hospice palliative home care. Canadian Journal of Nursing Research, 51(3), 131–132. https://doi.org/10.1177/0844562118823368

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.56 MB