| Literature DB >> 35739481 |
Hanna T Klop1, Anke J E de Veer2, Jaap R G Gootjes3,4, Dike van de Mheen5, Igor R van Laere6, Marcel T Slockers6,7, Bregje D Onwuteaka-Philipsen8,4.
Abstract
BACKGROUND: Palliative care for persons experiencing homelessness who reside in social service facilities is often late or lacking. A threefold intervention was implemented to improve palliative care for this population by increasing knowledge and collaboration between social service and palliative care professionals. This consultation service comprised: 1) consultations between social service professionals and palliative care professionals; 2) multidisciplinary meetings involving these professionals; and 3) training of these professionals. This study aims to evaluate the perceived added value of this threefold consultation service in three regions in the Netherlands.Entities:
Keywords: End of life; Health care; Homeless; Intervention; Palliative care; Social services
Mesh:
Year: 2022 PMID: 35739481 PMCID: PMC9217725 DOI: 10.1186/s12904-022-01000-8
Source DB: PubMed Journal: BMC Palliat Care ISSN: 1472-684X Impact factor: 3.113
Description of the threefold consultation service
| The intervention comprised three facets. These were: [ | |
| The implementation of the threefold consultation service and process evaluation started with a preparatory phase for all three regions from June to September 2019. Implementation plans were made, followed by an execution phase lasting 18 months. From March 2020, the COVID pandemic affected the evaluation. Professionals had less time and had additional tasks, while visiting restrictions meant interviews had to be conducted by phone or video call. | |
| This intervention was designed to be context-sensitive in order to fit local needs and tie in with existing collaboration efforts and/or further develop them. The regions of Amsterdam, Rotterdam, and Utrecht (three large cities in the Netherlands) participated in this intervention. Part of the context-sensitive design involved working out strategies drawn up in implementation plans by the participating organizations in each of the three regions. These implementation plans covered: the details of organizing the consultations, existing initiatives for consultation, collaboration, knowledge exchange, training, the organization of multidisciplinary meetings and potential for improvement, the organization of training and additional educational requirements, barriers and facilitators for all three elements, characteristics specific to each region, and possibilities for future financing and the continuation and embedding of the intervention. The implementation plans were updated every six months on the initiative of the researchers. | |
| The intervention aimed to start on a small scale and to expand further amongst professionals in the region once the consultations, multidisciplinary meetings, and training were well established. |
Overview of methods used, topics and content, respondents, and measurement moments
| Methods | Topics and content | Respondents | Measurement moments |
|---|---|---|---|
| Structured questionnaires on consultations, including the perceived added value | Nature of care request, patient diagnosis, advice provided or received (broken down into the physical, psychological, social, and spiritual domains of palliative care, plus addiction), consultant’s knowledge, consultation timing, facilitating and impeding factors regarding consultation, consultation quality, concreteness and usefulness of advice, effect on quality of palliative care, and added value of consultations. | Consultant Professional who requested consultation Requesting consultant | After each consultation |
| Structured questionnaires about the multidisciplinary meetings | Professional background of attendees, diagnosis, and details of the patients and domains discussed. | Consultant | After each multidisciplinary meeting |
| Structured digital diary recording activities and experiences with these activities | Type and number of activities performed, reason for activity, experiences with activity. The activities were: consultations, multidisciplinary meetings, training (given or received), and project team meetings. | Consultant | Weekly |
| Semi-structured group interviews about the perceived added value of multidisciplinary meetings and training activities | Process of getting involved in multidisciplinary meetings and training activities, appreciation of collaboration and discussions, discussed topics, added value of meetings, effect on knowledge and competences, effect on timing and quality of palliative care, suggestions for improvement. | Attendees of multidisciplinary meetings and training activities | After 12 multidisciplinary meetings and training activities |
| Semi-structured individual interviews about activities, process, added value, and maintenance | Activities, process, added value, and maintenance. | Managers at participating organizations | Shortly after consultation |
| Semi-structured individual interviews about activities, implementation, and added value | Current activities, collaboration, implementation and effort required, useful elements, missing aspects, perceived benefits of the three elements, perceived added value for collaboration, competences, quality and timing of palliative care. | Consultant | Mid-intervention period |
| Implementation diary with observations on added value and factors affecting this | Observations on the intervention: activities performed, steps taken to accomplish this, and evaluations and difficulties in this process. Observations on implementation: support for this process, strategies. | Researchers | Every week |
Overview of social service and palliative care professionals and activities
| n of unique involved palliative care or healthcare professionals involved | n of unique social service professionals | n of consultations | n of MDMs | n of training/education sessions | |
|---|---|---|---|---|---|
| Region 1 | 19 | 40 | 5 | 11 | 3 |
| Region 2 | 18 | 19 | 5 | 7 | 3 |
| Region 3 | 33 | 47 | 24 | 4 | 3 |
aIncluding nurses specialized in palliative care and hospice care, nurses specialized in psychiatric care, district nurses, home care nurses, GPs (in training), medical specialists concerning elderly care physicians (in training) and psychiatrists, spiritual caregiver, practice nurse, pharmacist
bIncluding care coordinators and managers of social service facilities, in-shelter nurses, social workers, residential workers, a secretary
cMultidisciplinary Meetings (MDMs). The meetings involved the individuals referred to in columns 1 and 2
General characteristics of patients discussed in consultations and MDMs
| n of patients discussed in consultations (%) | n of patients discussed in MDM (%) | Total n (%) | |
|---|---|---|---|
| Unique patients | 22 | 32 | 54 |
| Region 1 | 4 (18) | 14 (44) | 18 (33) |
| Region 2 | 4 (18) | 15 (47) | 19 (35) |
| Region 3 | 14 (64) | 3 (9) | 17 (32) |
| Male | 17a (77) | 26b (82) | 43 (80) |
| 30–40 | 0 (0)a | 3 (9) | 3 (6) |
| 41–50 | 3 (14) | 2 (6) | 5 (9) |
| 51–60 | 8 (36) | 9 (28) | 17 (32) |
| 61–70 | 9 (41) | 10 (32) | 19 (35) |
| 70 and older | 2 (9) | 2 (6) | 4 (7) |
| Dutch | 13a (59) | n/ae | |
| European (non-Dutch) | 1 (5) | n/ae | |
| Non-Western | 8 (36) | n/ae | |
| 24-hour shelter (long term) | 14 (64)a | 17 (53) | 31 (57) |
| Assisted living | 3 (14) | 3 (6) | |
| In-shelter nursing ward | 5 (22) | 15 (47) | 20 (37) |
| Somatic | 21a | 26b | 47 (87) |
| Cancer (metastatic) | 9 | 15 | 24 |
| Lung disease / COPD | 4 | 5 | 9 |
| Rheumatism | 3 | 0 | 3 |
| Heart failure | 1 | 5 | 6 |
| HIV | 0 | 3 | 3 |
| Other | 4 | 5 | 9 |
| Substance use | 17 | 19 | 36 (67) |
| Tobacco | 5 | n/ae | 5 |
| Combination of substances | 5 | 2 | 7 |
| Cocaine and/or heroin | 5 | 6 | 11 |
| Alcohol | 2 | 2 | 4 |
| Methadone | 1 | n/ae | 1 |
| Unspecified | 0 | 9 | 0 |
| Mental health | 12 | 4 | 16 (30) |
| Schizophrenia | 6 | 0 | 6 |
| Personality disorder | 3 | 3 | 6 |
| Other | 3 | 1 | 4 |
aMissing values for consultation data were < 5% for sex, age, nationality, residence and diagnoses. Missing values are not included in the numbers and percentages
bMissing values for MDM data were 19% for age and 13% for diagnoses. Missing values are not included in the numbers and percentages
cAs reported in the first consultation
d ombination of diagnoses possible
eNot included as a question or a checkbox in the evaluation questionnaire after MDMs
Quotes on collaboration, competences, and quality and timing of palliative care
| Theme and subtheme | Quote number | Quote |
|---|---|---|
| Collaboration and networks | ||
| Q1 | R: Well, she [palliative care consultant] was real good at tying in with the medical aspects, I’d say. So yes, she has a different view of the residents than we do as social service professionals. Yeah, we mainly focus on the supervisory aspect but we don’t know so much about the medical, physical aspect. She helps us think about that and asks us critical questions. She also does that with the psychiatrist and the family doctor. And she looks at what alternative solutions there are and how we can get an even better picture of a resident in terms of their physical condition. (Region 2, social service professional) | |
| Q2 | But for me it’s the other way about, because of course I wasn’t familiar with the whole homeless world. I knew something through the addiction services because of the multidisciplinary meetings [MDMs, which the participant took part in before the intervention]. But I take things from that and I think that we... […] Well, that we got to know more and... well, that we learned from one another. [...] So not just more breadth, but also getting the nursing perspective more involved [...] (Region 1, palliative care consultant) | |
| Q3 | I: Right, and what did you notice about the care providers’ experience with that? [familiar face and being able to consult someone] R: Yeah, they like that. Well, she’s much more accessible, you can easily just phone her, she’s in the MDM so you can raise things there. Right, of course that’s really nice. Palliative care is always a bit of an issue... I: Is it? R: Yes, because someone’s dying and that’s always a bit... well, some people have trouble with that. With morphine too, you know, giving morphine. Imagine we gave him morphine and then he died, did I... is that the reason he died? That’s another issue. So it’s always nice if you have someone you can fall back on then. (Region 1, Manager 4) | |
| Q4 | I think that we can find one another, and there comes a point that we’re in one another’s networks. And if we had a patient here with really complex behavior, then even if they came from another homeless center and not from [the homeless center with nursing facilities], for example, then you can still just call [the homeless center with nursing facilities] and ask them what we ought to do, or what route we need to take to get help with this. (Region 1, palliative care consultant) | |
| Competences of professionals involved | ||
| Q5 | R: For example by agreeing conduct-related things with your co-workers in training sessions or peer review sessions, and by clearly demarcating the clinical picture. Right: why do you still want to send that man to hospital and what are you hoping to achieve? You’re fighting a losing battle. And you see that you can help the team make decisions about such things. (Region 2, Manager 2) | |
| Q6 | [Palliative care consultant] sees and hears all the things that are going on, naturally enough, because she works here [in the hospice] and at [social service facility] so she sees what people are up to and what issues they face. Sure, [palliative care consultant] focuses her advice on palliative care, but she also learns a lot about the problems, the needs and especially the behavioral issues of homeless people. That experience is something she takes with her, consciously or subconsciously, in her work here [the hospice]. (Region 1, Manager 3) | |
| Q7 | R: I know she was involved at [location 2] with someone who was really in the terminal stage... and also behaviorally... I’m not going to the nursing home. And she was really good there at helping think up solutions, whereas the family doctor said, ‘Just go to a nursing home.’ And we thought, that’s not always how it works. It’s different behavior, another culture, not wanting to leave your safe environment, not having any family. She gave real support — what can you do as a team? [...] She could act as an intermediary more, say this is what the team can do, these are their areas of expertise, but that only goes so far and after that, we need to bring in other people. She brings those different worlds together. You really need that with a specific group, especially here with aging people and addiction and Lord alone knows what diseases. Yes, the whole package is broader, more complex perhaps. She’s better at that. I don’t have a nursing background at all. But the ultimate responsibility for the processes is mine, so I thought, ‘Oh great, someone who’s helping find solutions, that can only be positive.’ (Region 3, social service professionals in MDM) | |
| Q8 | R: A nice added advantage is that you’re then obviously helping increase the knowledge of the person who requested the consultation. One aspect of the consultation is often that you say, wow; that you show to a certain extent how it’s tough and difficult for the person requesting the consultation too. So that’s directly for the client and indirectly for the consultation requester. [...] But the training focuses mainly on the care providers... and they’ve been left out of the picture for a very long time. (Region 2, palliative care consultant) | |
| Quality and timing of palliative care | ||
| Q9 | R: She is also doing a bit better now thanks to this [dietary advice]. You can have a bit more of a conversation with her, and she’s slightly more cheerful and less at risk of falls. So at first it’s like, yeah, she’s getting so thin, we can’t communicate with her, everything’s getting worse, one function after another stops working. Not caring properly for herself. And now you see her becoming more stable purely thanks to a good diet. And that it could be a few years yet. But then you prioritize... you prioritize comfort rather than active treatment. Then you can say it’s a palliative process because if this woman doesn’t want to go any further we need to accept it, or if she starts to feel a bit better again we could raise the topic again. That’s the great thing about this; they arranged an Italian interpreter and now she has agreed to an operation, a cataract operation. Well, that’ll also improve her quality of life because she’ll be able to see things a lot better then, she will be able to watch TV, all that kind of thing. Those are things she enjoys doing. (Region 3, palliative care consultant) | |
| Q10 | R: Um, well, it [the advice in consultations and the MDMs] gives you a better understanding anyway if you know someone’s in the final stage. Including stuff about how you can keep up their quality of life. Um, also the fact that you can discuss it with the actual resident. Just like when someone has poor liver function and you can tell them: look, if you carry on like this, it will eventually be too late. And your liver is functioning really badly. R: It’s terminal... R: Yes. (Region 3, MDM) | |
| Q11 | Well, I think the quality of the palliative care in [social service facility] is improving as a result. They’ve gotten better at preparing for the things that could happen. So the advance care planning is better, so they don’t end up facing a | |
| Q12 | R1: But then at one point she [palliative care consultant] asked a kind of question: think of your clients — if they were to die within a year, would you be surprised or not? I learned from that... going from intuition to action where medical matters are concerned... that we should run through those clients and ask ourselves, why are you actually so concerned about them? ...And she [palliative care consultant] knew that you could use this here, that study, or try that. R2: Right. So there are more options. R1: That’s my main experience. I genuinely had to learn that difference between palliative and terminal. I didn’t know about that. R2: A lot of people didn’t know about that. It really has been a lesson. (Region 3, MDM) | |
| Q13 | R: Well, then I’m also a personal mentor [of clients in social services], and she [palliative care consultant] asked for medical data, and what’s the situation with the phase of life, what stage are we in? And if it’s a real bad stage, well then you know that at some point you can start a palliative route, that it’s possible that person could die soon. That was a really new perspective for us because we didn’t know much at all about that aspect. Right, we don’t know when... you don’t know that anyway, but the fact that you also look at the physical aspect, at how far the resident has gone there, that was genuinely new, let’s say. I: Right, so a world kind of opens up showing what you can learn about this and what can be going on physically? R: What can be going on physically and how far that may have progressed. (Region 3, MDM) | |
| Q14 | R: Right, but people [social service professionals] do need to be open to this and that’s not always the case. I: Right, so you can also run into quite a lot of...? R: Resistance. Yes, simply resistance in the sense of that’s not part of our job, we don’t do that. But when that occurs, you just let it happen. So yes, it’s a bit of give and take. [...] And you know what, homeless people, or the people in our target group, usually don’t have any family with them anymore. So if something happens and someone dies suddenly or didn’t get as much care as they needed, well, there’s no one to sound the alarm, let’s say. That’s not something the residential care facility does deliberately, but it’s that knowledge that’s lacking again. Sometimes I think there’s not quite enough attention for the real terminal care for such clients. (Region 3, Manager 1) | |
| Q15 | [Palliative care consultant] notes that there is a lot of uncertainty and a need for palliative care advice or simply to see whether someone is deteriorating. Her team meetings and recommendations are mainly about comfort and quality of life. She sees a lot of unconscious incompetence among care providers at the residential locations. Now sheltered housing supervisors are asking her for advice if they are worried about a resident or if they think someone will die if things continue like this. (Region 3, implementation log book) | |