Phase 1: Semi-structured interviews

In Phase 1, we conducted semi-structured in-depth interviews with patients and relatives in their homes or at healthcare centers for institutionalized participants (intermediate or long-term care facilities). This approach aimed to capture their daily living context and ensure their comfort [12]. Each interview lasted between 90 and 120 minutes and was conducted by a senior qualitative researcher using a predefined guideline agreed upon by the research team and steering committee.

The first part of the interview included a selection of pictures of nature used as an icebreaker to help explain the representation and meaning of a good death. After obtaining written informed consent, all the interviews were audiotaped for transcription and subsequent analysis. Key insights from each interview were discussed by two researchers, and anonymized summaries were shared with the Steering Group to ensure confidentiality.

Sampling

We selected a theoretical, planned, reasoned, and stratified sample [12,13] of 25 patients and relatives and divided them into four segments (based on health status and life stage; see more details in S1 Table). This sample included people with a variety of health diagnoses and comorbidities, and sociodemographic characteristics (age, sex and residence-urban/rural, health region, and socioeconomic status). The sampling was stratified and purposive, in an attempt to obtain a wide range of discourses. The Steering Group of the study, the Consultative Council of Patients of Catalonia, and the Catalan Health Institute collaborated in the recruitment of patients and relatives. The Agency for Health Quality and Assessment of Catalonia (AQuAS) coordinated the recruitment and fieldwork with the support of the following organizations and institutions:

• Association against Cancer (AECC)
• The Catalan Association for the Right to Die with Dignity
• Miquel Valls Foundation, Catalan Foundation for Amyotrophic Lateral Sclerosis
• Catalan Association of Patients with Advanced Respiratory Disease and Lung Transplantation (AIRE)
• Catalan Association for Parkinson’s Disease
• The Kreamics Association of Burn Victims of Catalonia, Family and Friends
• Management and Provision of Health Services (GIPSS) in Tarragona
• Primary Care Team from the Catalan Institute of Health in Camp de Tarragona

The general inclusion criteria were the following:

• Adults (18+) living in Catalonia, who presented complexity associated with a limited life expectancy (classified under the acronym in Catalan of MACA: advanced chronic disorder), [9] complex care needs, or complex chronic conditions (classified under the acronym PCC: complex chronic patient) [14], or
• Adults (65+) living in Catalonia, but not classified as MACA or PCC with a possible chronic condition, or
• Relatives of people classified as MACA or PCC over 18 years of age, living in Catalonia.

The general exclusion criteria were the following:

• People unable to participate due to auditory or cognitive limitations or illness.
• People uncomfortable discussing the topic at the interview.
• People who, at the time of the interview, were working in the field of public or private healthcare or end-of-life care.

People who agreed to participate and share their opinions and experiences, signing a consent form, were contacted to arrange an interview at their home (or institution where they were admitted; e.g., intermediate and long-term care).

Phase 2: Focus group discussions

The research team held three virtual focus sessions with 10–12 participants via a corporative Zoom of AQuAS. The sessions involved health and social care professionals, and professional representatives from of patient and/or family associations [13,15]. Each session lasted between two and a half and three hours, applying pre-defined guidelines agreed upon by the research team. The first part of the focus group discussions included choosing a photo/image of nature to describe what a good death was for each participant. Then, the main insights and themes from Phase 1 were presented and discussed to obtain further elements and understanding of the meaning of what a good death is. A senior researcher along with the coordinating researcher moderated these focus groups. All focus discussion groups were taped after obtaining the participants’ consent and written authorization. The study team transcribed and analyzed the sessions, ensuring that any identifying information from the participants was excluded.

Sampling

The study´s Steering Group aided in the recruitment coordinated by AQuAS of a theoretical, planned, reasoned, and stratified [12,13] sample of 35 professionals related to end-of-life care from primary and home care, hospitals, intermediate care, nursing homes, and patient associations. The recruitment considered findings from a literature review and stratified the sample into four segments based on professional backgrounds (see S1 Table).

The general inclusion criteria were the following:

• Professionals providing direct care to people in the final stages of life, in palliative care, including specialists in geriatrics, neurology, cardiology, oncology, pneumology, surgery, psychiatry, internal medicine or family and community medicine, nursing, psychology, and social work.
• Professionals involved in clinical management or health planning for end-of-life care. Researchers focused on end-of-life and death studies.
• Representatives from patient associations dealing with complex chronic conditions.

The exclusion criteria were the following:

• Age under 18; inability to take part actively in the discussions and generation of ideas due to sensory or cognitive limitations.
• Participants lacking sufficient proficiency in Catalan or Spanish for discussion.
• Unease in discussing the study topic.

Participants needed a reliable internet connection to engage in discussions lasting 2½ to 3 hours.

Fieldwork and topics recorded

The research team recruited participants from December 2021 to March 2022 and the fieldwork took place from January to April 2022. This included interviews with patients and relatives and focus discussion groups with professionals. S2 Table outlines the topics covered during the interviews, adapted to each informant type (patient or relative). Additionally, the team shared the main insights from the semi-structured interviews with professionals in Phase 2. They recorded participants´ residence (defined as urban or rural), as well as the health region in Catalonia in which they lived or worked.

Data analysis

The researchers carried out an inductive thematic content and discourse analysis (see more detail of the rationale in S1 Table (points 17 and 18) [9,12,15,16]. The thematic content and discourse analysis was carried out for sample segments and globally for each relevant topic [15]. The transcriptions were read and re-read. During analysis participants’ social backgrounds were considered to understand their perceptions of a "good death”, taking into account social constructions of its meanings. The researchers explored commonalities and differences among participants’ narratives and themes (elements of a good death). The themes and insights from semi-structured in-depth interviews (Phase 1) were triangulated with those that emerged from the narratives in the focus group discussions (Phase 2). Then, they were discussed by the core research team and subsequently with the Steering Group to confirm their coherence and robustness. Vivid quotations were selected to reinforce the themes and insights shown, adding brief information of the profile of participant to understand a little of their context.

Ethical and legal considerations

The research team adhered to the AQuAS code of good scientific practices during all the qualitative study. They obtained the necessary consents and authorizations required internally by AQuAS and the research protocol was approved by the Research Ethics Committee of the Jordi Gol i Gurina University Institute for Research in Primary Health Care Foundation (IDIAPJGol, 21/251-P, 24 November 2022). The study followed the regulations and the data protection and security policies of the Catalan government and AQuAS. Moreover, the data provided by the participants in the qualitative study were treated under the legislation on data protection in force, including EU Regulation 2016/679 of the European Parliament and Council of 27 April 2016 on data protection. All data were stored to reinforce anonymity and privacy following the Spanish Law on Data Protection (LOPD).

Characteristics of participants and general understanding of a “good death”

This qualitative study included a total of 54 participants consisting of patients, relatives, and professionals (“Table 1”). The final sample did not include professionals focused exclusively on research. Most participants who were involved in the focus group discussions worked in direct care or clinical management, and some also involved in research.

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Table 1. Characteristics of participants in the qualitative study.

https://doi.org/10.1371/journal.pone.0312426.t001

Participants reported that a prerequisite for a good death—whether for themselves or their relatives—was having lived a good and long life, while maintaining an acceptable quality of life (more details of selected quoting can be found in S3 Table). For this reason, one could argue that experiencing a minimum level of quality of life before death is essential for achieving a "good death." As one participant stated: “It’s great that you’re carrying out this study to find out what a good death means to people, but it’s pointless if we don’t first establish what it means for us to have a good life” (Patient with a complex chronic condition).

The reflections on “quality of life” imply having a level of autonomy and the ability to enjoy experiences during the time before death. It should also be stressed that both autonomy and enjoyment are subjective perceptions and, as such, can change and adapt to new circumstances. That is to say, a clinical condition that severely limits autonomy or enjoyment of life, -e.g., losing the ability to speak again due to the need for a tracheotomy required in the palliative treatment of amyotrophic lateral sclerosis- might not be as restrictive -if, for example, the patient can communicate through other means, such as a computer (see quotations in S3 Table).

Common elements of a “good death”

While nearly every interviewee offered a unique definition of a good death, one shared idea emerged: a good death consists of “dying in the way each person wishes" (patient, advanced chronic condition). Despite this individual subjectivity, eight common elements were identified (see Fig 1 and S3 Table), which reflect and summarize what might be considered a “good death.” These elements can be combined to form a cluster of what a good death means for each respondent (their own, or that of a relative/close friend), in terms of how, where, and with whom they want to die.

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Fig 1. Eight elements that summarize what constitutes a “good death" in the qualitative study with patients, relatives, and healthcare professionals in Catalonia (Spain).

https://doi.org/10.1371/journal.pone.0312426.g001

Of these eight elements, the most universal and frequently mentioned was comfort and placidity, understood as the complete absence of physical suffering, such as suffocation and pain, and mental suffering, such as anxiety and distress. This state also involves a body-mind sense of well-being similar to that experienced in the transition from being awake to falling asleep, in which, in a matter of seconds or minutes, the mind gradually disconnects from its external stimuli and enters a state of "peacefulness”.

“A good death is when “I fall asleep and I don’t notice [that I’m dying]”… it´s like the moment when “I go to sleep and I don’t wake up,” very closely related to what you mentioned as the moment you fall asleep […]" (Professional, social worker).

“I don’t think it’s worth living if you’re suffering," "It´s not that I prefer death, but I prefer not to suffer," "It´s different to die from something like a heart attack than to die after a long illness,” "if I need to be intubated (for life) and be like a vegetable without noticing anything, I’d rather have an injection… And goodbye!” (Patient, complex chronic condition, between 65 and 79 years).

The second element, safety, ties into the first; since it reflects the need to feel reassured that comfort and placidity will be sustained throughout the dying process. This reassurance comes from medical support, ensuring that drugs like analgesics and tranquilizers are readily available when needed.

The third element highlighted by most patients and relatives was warmth, the feeling of being accompanied emotionally by someone with whom the dying person has a significant bond and who helps them in the transition from life to death with affection and care. Kind treatment from healthcare professionals also played a key role in creating this sense of warmth.

The fourth element, harmony, relates to warmth and involves the ability of the people accompanying the person to react with honesty and calmness, “and not make a fuss.” It also requires the ability to maintain a positive and conflict-free relationship. Quoting one patient, “They mustn’t fight over whether or not they should keep me alive, or about the treatment I should have.”

The fifth element is intimacy: for a good death, the person needs to have a private space, whether they are alone or with others [see S3 and S4 Tables]. Care must be taken to ensure that there are no distressing external stimuli (for example, screams from the next room) and no third parties or outsiders who might spoil this intimacy (for example, the person dying should not be in the same room as another patient).

The sixth element is respect for the wishes of the dying person (or the designated representative). This is a kind of "fundamental right," especially in cases in which an advance directive (colloquially known as a "living will") has been made, or if the person has verbally expressed to their relatives their decisions regarding certain treatments or medical practices or the circumstances in which they might opt for euthanasia. This respect is considered essential by accompanying relatives, but above all, by the physicians and nurses attending the person at the time of death.

The seventh element, mentioned by patients and relatives, is peacefulness. Peacefulness involves the sensation of being at peace with oneself and with others, the feeling that no important matters or conflicts have been left unresolved, and the acceptance of one’ own death or that of a loved one. Some patients and relatives note the key role of spirituality or religion in achieving this peacefulness.

Finally, the eighth element is fulfillment or, the feeling of having lived a life full of significant emotions and experiences. It involves achieving a quality of life that allows a person to depart this world with satisfaction and to leave behind good memories for loved ones.

Relevant elements of a “good death” for relatives

Relatives view a “good death” for their loved ones as one that is positive and free from trauma, flowing smoothly. Therefore, their focus tends to be on the variables of comfort and placidity, safety, warmth, and intimacy (additional quotations and narratives can be found in S3 Table). For relatives, the most important point is to ensure that their loved ones do not suffer in any way, feel accompanied and valued, and can pass away in a quiet and private space (S1 File). In any case, as noted above, each person (in this case, each relative) has their particular cluster of elements that comprise their concept of a “good death” (in this case, thinking of their sick relative), and they often include other elements (Fig 1)–above all, harmony and respect, and, less frequently, peacefulness and fulfillment.

Key elements of a “good death” for professionals

Healthcare professionals perceive a “good death” similarly to patients and relatives, considering both the moment of death and the life leading up to it. In the focus group discussions, professionals mentioned several aspects that define a good death. They consider it important to ensure comfort and avoid suffering—understood as providing the person with all the available tools and necessary therapeutic means. Healthcare professionals highlighted the importance of receiving proper training to ensure that the person does not suffer and feels protected and safe throughout the dying process, while also allowing for an intimate experience. However, unlike patients and relatives, professionals did not tend to evoke the idea of "placidity" or agree that a good death implies feeling in a state like that of the transition between being awake and falling asleep.

“I think peacefulness and internal harmony are key points. It´s about being at peace with yourself. However, some patients face a disease with a rapid decline and… find it hard to accept the end of life, making it challenging to achieve this peacefulness. A necessary first step is acknowledging, “I’ve done everything I can; I’ve reached this point.” While primary care services and hospital services obviously do all they can, attaining peacefulness, but acceptance is a necessary step" (Professional, primary care physician).

“People who die with someone next to them, I mean, with a patient next to them… I mean, this happens… I guess it doesn’t happen in acute care hospitals in general anymore, because awareness is growing and you [other professionals participating in the focus group discussions] are working hard on this issue, but there are still areas in which it happens. In addition, this, in the order of priorities, is the most serious thing that can happen; I mean sharing a room with another person who is not at the end of their life" (Professional, patient association).

Another priority that emerged from the discussion with professionals to achieve a good death was the need for emotional support, understood as the provision of warmth and company by both practitioners and relatives. This was particularly important in light of the experience of the COVID-19 pandemic in which thousands of patients died alone or were accompanied only by healthcare personnel. In this sense, no matter how much effort is made by the health staff to provide accompaniment and support for patients–including, on occasions, connecting them with their relatives through a video call–, the pain and suffering generated by the restrictions on visits compounded the impact of the disease itself. In any case, the professionals stressed how important it was that the loved ones could accompany patients throughout their illness and, particularly, at the moment of death. The results also draw attention to the key role of healthcare professionals from different disciplines in providing empathy, warmth, and emotional support.

“I come from an association, from a patient organization. What are we finding? That many people approach us, especially relatives, looking for something that they have not found in the healthcare services. Many times… I come to see if you [referring to other care professionals in the focus group discussions] can help me, because I don’t know who to talk to, and I’m looking for the psychosocial and emotional support that these relatives miss–and that’s why they come to us for assistance” (Professional, patient association).

“I don’t know if the home care program and support team [Spanish and Catalan acronym PADES] are enough; […] if they are sufficient, I don’t know, but it should be available to everyone, I think that this is very important… They should invest in these teams; let them work with dignity and with enough resources. […] I would say that having a good death is having a good accompaniment” (Professional, patient association).

“Being able to have spaces for communication, having space or being accompanied, being able to speak in case of need. In the case of family members, patients are very often more aware of their situation than their relatives, and they lack someone to share their fears, doubts or unresolved issues. So, for me, a good death would also be to have somewhere, and someone (ideally a family member, but if not, a professional) whom I can talk to openly and feel that I’m being listened to, that I’m not being judged and that there is this safe space” (Professional, social worker).

Sadly, professionals sometimes witness patients dying in the hospital corridor, in a cubicle within emergency units, or sharing a room with another patient. However, there are also testimonies of professionals who have seen patients dying in privacy despite being in a busy hospital environment. The importance of feeling peacefulness and fulfillment (as understood by patients and family members) is also echoed by professionals, who emphasize the acceptance of death and the importance of being able to leave fond memories among those who remain.

To plan or not to plan: a key point to understanding the implications of a “good death”

A sudden death–understood as a death that occurs unexpectedly and lasts only a matter of minutes–tends to be considered the paradigm of a good death, or the "ideal" death. This is because the person “does not suffer so much physically or psychologically” (e.g., due to a fulminant heart attack) and they die in a state of calmness–typically, as dying in their sleep. However, a deeper examination reveals a significant tension between the desire to die suddenly, without knowing it, and the desire to be able to anticipate one’s death to "prepare" for it and "leave everything in order". "Preparing for death" involves activating mechanisms that help people connect with others and with their inner spiritual worlds, and to die in peace with others and oneself–goals over which control is lost if death comes suddenly:

“A good death is when ’I fall asleep and I don’t notice’ [that I’m dying]… as the moment when ’I go to sleep and I don’t wake up,’ very much related to what you mentioned as ’when you are falling asleep’. […] Taking into account the taboo of death for society, how we approach the whole issue of suffering from childhood to adulthood, sometimes dying suddenly means not having to say goodbye to family members, not having to solve pending issues, not having to face that moment. […] Dying suddenly avoids the whole process associated with other types of death” (Professional, social worker).

“I think a good death would be a heart attack that results in immediate death. That is the best, I think, from my point of view… Because you are not sick, there is nothing wrong and, suddenly, on the same day it happens to you…, and that is it […]” (Relative, woman, 46 to 64 years old).

“I want to die on a comfortable mattress, sleeping peacefully. The only thing that frightens me a little is not being able to die when I want” (Patient, woman, 65 to 79 years old).

As seen in some of the above quotes, some participants consider a “good death” to be the moment of a placid transition similar to falling asleep:

“I just wanted my mother not to suffer, and she didn’t. She fell asleep and that was it; she died like a candle going out… and that is it. The most beautiful death a person can have. The death of my mother” (Patient, over 65 years old without chronic health conditions).

Conclusions

The study confirms that achieving a single, universal definition of a "good death" is challenging, as people’s perceptions are subjective and unique, much like their definitions of a "good life." Despite this subjectivity, eight common elements emerged from the interviews and focus discussion groups. Individuals can prioritize one or more of these elements, creating a personalized vision of their ideal “good death.” The eight elements identified are comfort and placidity, safety, warmth, harmony, intimacy, respect, peacefulness, and fulfillment.

All participants, including professionals, agree that the absence of pain and distress is essential for achieving a good death. The wish to die "without suffering" is expressed across all groups and aligns with the findings from other studies on the meaning of a good death. However, this "dying without suffering" refers not only to the moment of death, but also to the importance of having lived a fulfilling life, with an acceptable quality of life and possibly enduring "bearable" suffering until the moment of death. Once again, the distinction between "bearable" and "unbearable" suffering is subjective and unique to each individual and is a perception that can change over time.