1. Introduction

Our current healthcare system does not always meet the needs of the dying in our society [1]. This was particularly evident during the COVID-19 pandemic and will be even more so in the coming years as skilled workers become scarcer [2]. As a result, patients and families rely on people who can advocate for them or fill in the gaps in care. ‘Death Doulas’ (DD) take on this role, providing emotional, spiritual and social support to the dying and their families throughout the palliative care situation and the dying process [3]. The activity of ‘DD’ is relatively new and has emerged in the United States of America in the last 20 years [4]. The role is derived from ‘Birth Doulas’ who support pregnant women before, during and after childbirth. It is not about taking over midwifery duties but about caring and being there for the woman giving birth (see section 1.1). There are very positive aspects to this, both for the mother and the newborn baby, which have already been scientifically analysed [5, 6]. The beginning and end of life are often compared with each other as crucial experiences in the life cycle. The aspects of care and support are also important components in the field of palliative care, so it is obvious to offer the support of ‘Doulas’ at this stage of life as well [7]. Although there are now private organizations that train and certify ‘DD,’ many ‘DD’ continue to work on a private basis without certification. As the term ‘DD’ is not yet protected in Germany, there are, to our knowledge, no prescribed training programmes to become a ‘DD’ which maybe leads to a low level of acceptance among official palliative care providers. Even in an international comparison, the role and scope of practice of ‘DD’ remains unclear, as Deb Rawlings and colleagues explain in their review [1]. Marian Krawczyk and Merilynne Rush also focus on the definition of ‘end-of-life doulas’ in their work but concentrate on the Anglo-American area [8]. As there is no comprehensive data on the work of ‘DD’ in Germany, the aim of this nationwide survey is to fill a gap and provide a first overview of the work of ‘DD’ in palliative care for people at the end of life in Germany.

As described by Volberg et al., there is a two-tier system of palliative care provision in Germany. Primary care is provided by general practitioners, nursing services and hospital physicians at the general palliative care level. The second level includes palliative care units attached to a hospital where acute medical problems can be treated. In addition, there are specialized outpatient palliative care services (German abbreviation: SAPV), which provide palliative care at home, and hospices, where people with a low life expectancy can live and receive extensive palliative care until they die [9, 10]. In addition, there are many support organizations, such as volunteer hospice workers, who help seriously ill patients and their families to cope with the final stages of life. Civic engagement has a long tradition in German palliative care, with many volunteers supporting hospice work. Volunteers provide assistance with nursing care, conversation, outings, respite for family members, and necessary errands [11]. It is unclear to what extent the provision of ‘DD,’ therefore, plays a role in the German culture of palliative care, as no research has been carried out in this area to date.

2. Materials and Methods

After an extensive literature review on the topic, the study team developed a questionnaire with a total of 18 questions (see translated version in the supporting information files (available here)). This questionnaire was checked for comprehensibility by three uninvolved colleagues before the start of the study. After the positive vote of the local ethics board from October 7, 2022 (file number 136/22; ethics board of the Philipps University of Marburg, Germany), and the registration in the German register of clinical trials (DRKS-ID: DRKS00030426, registration date October 24, 2022), all German hospices, palliative care units and specialized outpatient palliative care services were contacted by post and asked to participate. The necessary addresses were generated via the homepage of the German Association for Palliative Medicine (DGP) [13]. In total, the questionnaire and a prepaid return envelope were sent to 259 hospices, 323 palliative care units and 347 specialized outpatient palliative care services in November 2022. The paper–pencil survey was anonymized, and the data analysis was purely descriptive. Each participant was informed in the invitation letter that taking part in the anonymous survey and returning the questionnaire to the study team included the consent for publication. According to German law, a signed declaration of consent is not required in this case. Due to the anonymous nature of the study, a reminder letter could not be sent to nonparticipating institutions. The research was conducted in accordance with the Declaration of Helsinki. The Checklist for Reporting of Survey Studies (CROSS) was used as a reporting checklist for manuscript preparation.

Not answering individual questions did not lead to the exclusion of the questionnaire. The questions were analysed individually, and the percentages were adjusted accordingly.

Data analysis was conducted using Microsoft Excel, Version 16.6.

3. Results

Over a period of four months (November 2022 to the end of March 2023), we received a total of 338 completed questionnaires (36.4%). A total of 120 hospices (46.3%), 112 palliative care units (34.7%) and 136 specialized outpatient palliative care services (39.2%) responded. The majority of responding organizations (90.6%) only care for adult patients, while 3.8% only care for children and 5.3% care for both adult and paediatric patients. The questionnaire was most often completed by the responsible physician (51.9%) or the nursing director (32.9%). Less frequently, it was completed by commercial or organizational management (13.1%) or another professional group (e.g., social workers) (7.4%). Further demographic data on the responding centres are shown in Table 1.

The term ‘DD’ was recognized by 27% of the respondents, while 63% were not familiar with it and 10% were unsure. Only 18 organizations (5.3%) reported that they use the support of ‘DD.’ Most Doulas (67%) work in these settings on a voluntary basis, while 39% are employed and 11% work on a freelance basis. When asked about funding, several respondents reported that they were paid from the funds of the sponsoring organization, e.g., a hospice fund. Twelve organizations (66.7%) reported that ‘DD’ had received training. The areas of responsibility undertaken by ‘DD’ are shown in Table 2.

Seventeen out of the 18 organizations working with ‘DD’ say it makes sense to work with them, with only one person saying no. In addition, 66.7% would like to use more ‘DD’ in their care. Eleven percent of the survey respondents reported being asked by patients or relatives for the services of ‘DD’ frequently, 39% occasionally, 33% rarely and 17% never. The need is perceived to be high by most institutions (78%) that work with ‘DD’ and even very high by 11%. One institution sees little need, and another sees no need at all. Satisfaction of patients and families with the services of doulas is reported as very satisfied (47%) and mostly satisfied (53%). In addition, 94% of the institutions working with ‘DD’ would recommend them to other institutions. Only one was unsure.

Overall, 59% of the respondents expressed a need for more information on the topic (e.g., through articles). On the other hand, 28% disagreed and 14% were unsure if they want more information.

Eighty-nine percent of organizations that do not work with ‘DD’ state that the tasks and services provided by them are carried out by other professionals and volunteers. Free-text responses often described the role of ‘DD’ as being the core of palliative care and therefore there is no need for ‘DD,’ as their work is as well carried out by other professionals. Table 3 lists some verbatim quotes on why there is no collaboration with ‘DD,’ and Table 4 shows the professional groups involved in end-of-life care in the different institutions in Germany.

4. Discussion

Our findings show that ‘DD’ do not yet play a significant role in specialized palliative care in Germany. Even when searching for studies or specialist articles on German ‘DD,’ there are only a few popular science articles in magazines or online portals, and no scientific surveys on the topic [14–16]. Our results can, therefore, only be compared with studies from other countries, where palliative care is often organized differently than in Germany. Palliative care in Germany has developed at different levels over the last 40 years. In particular, volunteers have played an important role in palliative care, both at home and in hospices and palliative care units [17]. The establishment and development of German hospice and palliative care is largely due to the commitment of volunteers. This volunteer work has made it possible to build up a nationwide network of care for people at the end of life. Currently, more than 120,000 volunteers are involved in over 1280 hospice and palliative care services [18]. These volunteers are usually trained as hospice counsellors according to the curriculum of the German Hospice and Palliative Care Association (German abbreviation: DHPV) and learn basic skills in dealing with the needs of the dying and their families. Hospice volunteers are not medically trained but look after the psychosocial needs of the patient and their relatives, organize excursions and provide bereavement support [11]. According to the curriculum, the training to become a volunteer hospice counsellor takes 100 teaching units of 45 min each and should include a practical placement in addition to the theoretical teaching units. The theoretical part of the training covers a variety of topics, including personal biographical reflection, spiritual and communicative learning areas and information about the palliative care movement and care in general [19]. As these volunteers play an important role in palliative care in Germany, the need for ‘DD’ may not be considered as great. This was also frequently mentioned in the free text responses of the questionnaire.

As the term or profession of ‘DD’ is not well defined or protected, and there is no standardized training, it is difficult to systematically record provision. In their systematic review from 2018, Deb Rawlings and colleagues also highlight the issue of nonstandardized training and a lack of understanding of the role. They were only able to include five papers in their analysis, indicating a lack of scientific investigation into the topic, and also describe the work of ‘DD’ as similar to that provided by multidisciplinary palliative care teams [1].

In their qualitative study, Marian Krawczyk and Merilynne Rush sought to describe the role of ‘DD’ in more concrete terms. They conducted 22 semistructured interviews with participants from four countries. They found that there is a wide variety of terms used to describe the same role. In addition to ‘DD,’ the term ‘end-of-life Doula’ or ‘Death Midwife’ is particularly common. This paper also refers to the different understandings of the role, as there is no single definition for the work of a ‘Death Doula.’ However, the primary descriptions include the terms ‘support,’ ‘educate’ and ‘empower’ [8]. Changing lifestyles and the increasing individualisation of society may lead to more personalised services for people at the end of life in the future. There is a growing trend for people to opt out of traditional medical care and to seek alternative forms of care. This is where ‘DD’ come in. As they do not provide traditional medical care but rather attend to the psychosocial and spiritual needs of the dying person, ‘DD’ can fill a gap that is currently not being satisfactorily addressed in traditional end-of-life care [1, 7]. As described in the review by Deb Rawlings, there are also no uniform standards of training for ‘DD’ in other countries, and no satisfactory overview of the areas in which they work. Most of their work is individual, without specific contact with palliative care services, so it is not surprising that the survey we conducted also found that ‘DD’ rarely work with palliative care providers in Germany [1]. So, perhaps the question is whether the work of ‘DD’ can be integrated into traditional hospice and palliative care at all, or whether it will remain an additional service for a particular group of people who are interested in individualised and alternative care.

5. Conclusion

Our results show that the use of ‘DD’ in German palliative care is rare. Assisting the dying and similar activities are often carried out by other professionals or volunteers. However, as the use of ‘DD’ has shown positive results in other countries, it would be desirable to implement these aspects in the German palliative care structure. This requires further research and training, so that, in addition to greater public awareness, the benefits can also be secured on a scientific basis. The development and certification of formal training programmes could also increase the acceptance of ‘DD’ in end-of-life care by palliative care providers.

Ethics Statement

Positive vote of the local ethics board was given on October 7, 2022 (file number 136/22; ethics board of the Philipps University of Marburg, Germany), and registration in the German register of clinical trials (DRKS-ID: DRKS00030426, registration date October 24, 2022) were obtained before the start of the study. According to German law, a signed declaration is not required, as the data are collected anonymously. Participation and return of the questionnaire implies the willingness to process the data, about which participants were informed in the cover letter. Research was conducted in accordance with the Declaration of Helsinki.

Consent

Not applicable due to the anonymous nature of the survey. Each participant was informed in the invitation letter that taking part in the anonymous survey and returning the questionnaire to the study team included the consent for publication.

Conflicts of Interest

The authors declare no conflicts of interest.

Funding

This study was funded by Philipps-University Marburg.

Supporting Information

Translated English version of the questionnaire. Questions 1–6 asked for demographic information about the palliative care organisation. Question 7 is a key question about whether the institution works with ‘Death Doulas.’ If so, questions 8–18 follow, whereas if the institution does not work with ‘Death Doulas,’ only questions 19–22 should be answered.