Abstract
Background: In the Netherlands, out-of-hours primary care has been re-organized from small on-call rota groups to large-scale GP co-operatives. However, out-of-hours palliative care is an area of concern. According to studies in the UK, the transfer of information about terminally ill patients to GP co-operatives seems to be poor, resulting in care that is often inadequate. Our aim was to investigate the experiences of GPs in the Netherlands about the quality of out-of-hours palliative care provided by GP co-operatives, and to identify elements of care that might need to be improved. Methods: Setting: General practice. Design: Qualitative study, using three focus group discussions, analysed in a qualitative descriptive approach. Results: GPs participating in the focus groups, considered the quality of out-of-hours palliative care that is provided by GP co-operatives to be meagre. The service provided by the co-operatives was designed for acute medical problems, rather than for palliative care needs. The GPs reported three major problems: (Citation) lack of adequate information at the GP out-of-hours service; (Citation) lack of anticipatory care during office hours; and (Citation) absence of a palliative care policy in the GP co-operatives.
Conclusions: Although GP co-operatives are capable of providing continuity in palliative care, improvements could be achieved if GPs and GP co-operatives address the problems mentioned above.
Introduction
Palliative care for patients who are nearing the end of life involves several elements of the healthcare system. In recent years, there has been a strong emphasis on the development of palliative care in the Dutch primary care. With the help of governmental finance, efforts were being made to improve expertise and to establish regional networks, in which the primary, secondary and tertiary health care settings co-operate. Part of their work was the establishment of Palliative Care Consultation teams, in which experienced professional care providers, e.g. hospice staff, specialists in pain treatment and experienced GPs co-operate. These teams give advice and support to GPs and are usually also accessible during the out-of-hours period. Palliative care in the Netherlands is expanding, and the climate for further development is favourable (Citation1).
A prerequisite for good palliative care is that care does not end after office hours. Re-organization of the out-of-hours primary care services in the Netherlands, as seen before in the UK and Denmark, has given rise to concerns about the quality of out-of-hours palliative care. This re-organization in the Netherlands has been initiated by the GPs themselves, mainly to reduce their workload. As a result, large-scale co-operatives providing out-of-hours primary care were established around the year 2000, with the aim to achieve more efficient handling of urgent requests from patients (i.e. requests that cannot wait until the next day) (Citation2,Citation3). Within a few years, a shift took place from small on-call rota groups to large-scale GP co-operatives, now serving over 90% of the population of the Netherlands. On the whole, GPs are positive about this development, although evaluations made by patients and other professionals are more varied (Citation4–6).
Palliative care is one of the domains of care, in which patients express concerns about the quality of the care (Citation6,Citation7). The challenge is to provide care, which is continuous and responsive in times of need (Citation8). One of the major problems in palliative care appears to be poor communication about terminally ill patients between the GPs and the GP co-operatives. Out-of-hours providers face substantial difficulties in identifying patients with complex needs, and particularly those with palliative care needs (Citation9). According to studies carried out in the UK, few GPs report that they routinely transfer information about their palliative care patients to the GP co-operatives. This results in care that is often suboptimal, e.g. resulting in poor symptom control and unnecessary hospital admissions (Citation10,Citation11). Moreover, it fails to meet the legitimate expectations of patients and their carers. There are still several significant gaps in the provision of out-of-hours care for people receiving palliative care at home (Citation12).
We, therefore, aimed to investigate the experiences of GPs in the Netherlands about the quality of the out-of-hours palliative care that is provided by GP co-operatives, and to identify aspects for which recommendations about the organization of the services could be made. We addressed the following research questions:
How do GPs assess the quality of out-of-hours palliative care provided by GP co-operatives in the Netherlands?
Which factors contribute to a better or worse quality of out-of-hours palliative care according to the GPs?
Which improvements in the quality of out-of-hours palliative care could be made according to the GPs, and how can these be achieved?
Methods
Design
Since research on this subject is scarce, we chose for an explorative design, with the aim to investigate the full array of topics involved. We opted for a qualitative study using focus groups discussions with GPs (Citation10,Citation11). This method allows the participants to identify and discuss the topics that are important for them. We expected to gain insight into their attitudes, experiences and expectations about out-of-hours palliative care. Our intention was to organize as many focus groups as needed to reach content saturation.
Setting
In the Netherlands the GP is the central professional in the management and co-ordination of primary health care, including palliative care. District nurses take care of much of the hands-on palliative care and specialist palliative care advice is widely available, also after office hours. The regional palliative care consultation teams provide on call care advice. Most GPs also work as a locum for the local GP co-operatives.
Sampling
We composed three focus groups. We obtained lists of GPs in two different regions from the National Association of GPs, containing approximately 1000 names with addresses and date of start of GP practice. The addresses gave information about gender and whether a GP was working in a group practice or not. From these lists, we selected and invited GPs according to the criteria in . The selected GPs were working for 5 different GP co-operatives in rural and urban areas. We recruited two groups of GPs (n = 6; n = 7), who differed on relevant aspects: gender, years of experience as a GP, working fulltime or part time, working in a group practice or not, urban or rural practice location, training in palliative care, and working as a GP trainer. A GP trainer is attached to a university and is co-responsible for the GP trainees ().
Table I. Characteristics of GPs participating in the three focus groups.
A third group consisting of 7 GPs from across the Netherlands, and 7 GPs from other European countries (Denmark 2, France 3, Italy 2) was a convenience group of GPs attending a WONCA conference on palliative care. We assumed that the presence of the foreign participants would enliven the discussion. We also wanted to offer them the opportunity to experience a focus group as method of qualitative research.
Data collection and analysis
The participants of the first two focus groups met at the VU University Medical Centre in Amsterdam, in February 2004 and a third focus group discussion was held during the Wonca Conference in Amsterdam in June 2004.
Each group was invited to discuss out-of-hours palliative care provided by GP co-operatives, starting with four open-ended questions (). The groups were encouraged to raise their own issues about these questions. An experienced moderator (NB) conducted each group discussion. The focus group meetings lasted for approximately 2 hours.
Table II. Focus group questions.
The discussions were tape-recorded with the participants’ consent, transcribed verbatim and analysed by two researchers (BS and NB, both GPs). We used a qualitative descriptive approach, a method that aims to obtain first-hand knowledge of the participant's experiences with a particular topic. The product of this approach is a description of these experiences in a language similar to the participant's own language (Citation14–17). Analysis was performed by reading the transcripts repeatedly and making notes manually on the different topics that arose in the discussions. Both researchers identified emerging themes and categories independently, and agreement was reached by discussion. Meaningful text excerpts were grouped according to these categories.
The first two focus groups were conducted in Dutch, the third in English. An experienced translator translated the Dutch transcripts used in this article in English. All transcripts were subsequently re-translated into Dutch by another translator to examine if no shift of meaning had occurred, which was not the case. A summary of the transcripts, together with a list of themes and categories, was sent to the participants for a member check.
We started the analysis after we had the results of the first focus group. After the second focus group, we analysed the results of this group in comparison with the results from the first group. After analysis of the results from the third focus group, we compared these again with the results from the first two groups. At that point, we found that no new themes had emerged. Therefore, we assumed that we had reached saturation.
We only analysed the contributions of the Dutch participants. Comments from international GPs were not used in this study. As had been expected, the organization of out-of-hours palliative care in their countries differed from the situation in the Netherlands.
Results
The characteristics of the GPs participating in the three focus groups are presented in . Quotes from Dutch participants were taken from all three focus groups.
The proportion of GPs involved in vocational training was higher in our study (70%) than among GPs in the Netherlands in general (13%).
The participating GPs reported that they relied on the out-of-hours services for palliative care, whereas before the GP co-operatives were established, they were accustomed to provide palliative care themselves.
It is especially the new situation. In the past you did it all by yourself, you had to be on call at home, I can't manage that anymore. I knew the people then, and their situation, but all that has changed.
Quality of out-of-hours palliative care
The GPs are concerned about the overall quality of the out-of-hours palliative care that is provided by GP co-operatives, which they describe as meagre.
GP co-operatives mainly focus on acute, biomedical care, and it is difficult to maintain continuity of care for patients with complex needs.
What we do, while we are on call, is attend acute problems and wait and see for the rest. This is why I think that the quality of palliative care during the after hours period is meagre.
Many decisions in out-of-hours palliative care are made ad hoc by a locum without consulting the patient's own GP or other colleagues. However, sometimes a locum can solve problems that were not adequately addressed during office hours. Continuity of care appears to work both ways: inadequate quality of care from the patients own GP hampers out-of-hours care and vice-versa.
It strikes me that the situations I'm facing when I'm on call are increasingly different. Sometimes everything is taken care of. Usually the care is meagre. Sometimes situations are distressing, with long overdue maintenance … and in these cases a visit of another doctor is a blessing for the patient.
The GPs indicated that it is unsatisfactory for patients and their carers that many questions are handled by phone when a home visit is needed.
What I also see …, if there's a problem and the patient's GP is not available … everything is handled by phone. I think that this is awful, making such important decisions about the medication of a terminal patient by telephone. My opinion is that you have to visit the patient personally.
The GPs also state that palliative care after office hours in care homes for the elderly is especially difficult, mainly due to staffing problems.
Care homes are another story. In my opinion, the staff causes panic, instead of creating an atmosphere in which someone can peacefully die. This is an increasing problem. The level of care is getting lower.
What contributes to the quality of out-of-hours palliative care?
In , we present the facilitators and barriers reported by the participating GPs. GPs should anticipate during office hours palliative care problems that might occur after office hours. If this is done properly, most of the palliative care can be arranged during office hours.
Table III. Facilitators and threats to the quality of out-of-hours palliative care provided by GP co-operatives.
The core aspect of palliative care is anticipating future problems. I know that now, but I didn't learn that during my training or in the first twenty years of my career. Anticipation is the key.
An important contribution to quality is making continuity of care possible by transferring adequate information about the patient to the GP co-operative.
Hand-over of information is a necessity. I feel more supported if I know on beforehand what happened with this patient and his family.
Involvement of the locums with the patient's situation is also a prerequisite for delivering good palliative care. Palliative care is not only about providing medical interventions but also about paying attention.
I really think that involvement with what is happening is crucial. Almost even more so than transferring information. Because information can sometimes be obtained from the family.
A lot of information can probably be gathered when the locum arrives at the patient's home, but it is comforting for the patient and his carers if the locum has already been informed.
It would also be an improvement if the patient's GP provides the GP co-operative with his mobile phone number and can be contacted. Better education in palliative care would also help; it could prevent the locums from getting ‘cold feet.’
What is threatening the quality of care?
Out-of-hours care has changed with the development of the GP co-operatives and personal continuity of care is no longer the rule.
In the past I was always on call for terminally ill patients, or I could transfer them easily to a colleague in my rota-group. Now, with the co-operative, it's difficult, mainly because it's more anonymous. And I find it harder to be on call, after five o'clock I'm no longer available.
Transferring information to the GP co-operative is a difficult task. The organization is anonymous; there is no longer any contact with colleagues about the out-of-hours care.
If you write, for instance, that a patient does not want any treatment aimed at cure because this is no longer possible, that could result in carelessness. So, just because I transferred information, the locum thought: That patient can wait.
The GP co-operative is primarily biomedical care-orientated. Acute conditions take precedence; there is very little available time to address the needs of palliative care patients. Palliative care calls, although infrequent, are time-consuming. There is no explicit policy how to handle these calls in the context of a generic out-of-hours service, and there is no additional time for palliative care home visits.
It is not because the GP co-operation works on a larger scale, but because of the policy. There is no vision, everyone does his own thing, and it is very busy. We do not have time for serious cases because of too many patients with minor complaints.
It is a problem that most of the time only young, relatively inexperienced, doctors staff the GP co-operatives, especially at night, which reduces the quality of provided care.
The out-of-hours palliative care provided in care homes for the elderly is an area of concern, mainly due to staffing problems.
Illogical questions without a firm basis come mainly from care homes and much less often from the home situation. Carers in care homes are often not acquainted with the patients. Their protocol tells them to call, and they want to be covered for claims.
Determining whether a patient is in a terminal phase or not, is also a problem. The prolongation of the palliative care phase makes it difficult for a GP to decide when he has to arrange extended palliative care. The rationale of a chemotherapeutic treatment is not always clear to a GP in the end stage of life: Is there still a palliative benefit or is there not much reason in the continuation of this therapy?
Patients are treated endlessly. They are more or less in a terminal phase, and are still receiving chemotherapy. It's difficult because they don't get proper palliative care in this way.
What improvements can be made?
It is helpful if the patient's GP has made a care plan anticipating future problems. The GP uses information about past events and personal circumstances to provide care that also extends beyond the hours of his surgery. He is responsible for the continuity of care.
I think anticipating during office hours is extremely important. It's one of the most important conditions for good quality of out-of-hours palliative care. You have to learn it yourself; it's more about attitude than about knowledge.
Providing information to the GP co-operative and up-to-date information in the patient's home is viewed as not only important for the quality of care, but also for the prevention of uncertainties for the patient and the carers.
A patient who is terminally ill appreciates it very much if the visiting doctor knows all about him. And as a locum I also want to know what to expect.
The home visit itself, and not the duration of the visit, is considered to be important because it gives more moral support to a patient than a telephone contact.
Time is not the most important thing. Being there is important. Often it sufficient just because you've been there, and then they can carry on.
A major asset, particularly in the after hours period, is a well-arranged support system, which involves the family, other carers and district nurses. The possibilities of hospices and palliative care units were mentioned for patients without such help.
I discuss with patients who are living alone that hospices exist, meaning they don't have to die at home all alone.
Suggestions to make these improvements possible
Clear guidelines for the transfer of information would be helpful and also better use of Information and Communication Technology. Eventually, GP and GP co-operatives will share electronic files of palliative care patients.
An online hand-over form would be a great help. In our co-operative, improvements were achieved by the introduction of clinical guidelines on palliative care after office hours.
Furthermore, permanent palliative care education is needed: although some doctors receive extensive training in palliative care, the overall level must be raised.
If palliative care was included in the academic training, this problem would have been solved.
Discussion
Main findings
This study focused on factors that, according to GPs, influence the quality of out-of-hours palliative care provided by the GP co-operative. GPs considered the quality of out-of-hours palliative care in the Netherlands to be meagre, and regarded out-of-hours service responses to be designed more for acute medical problems rather than for palliative care needs (). Furthermore, there was specific concern about the quality of the out-of-hours palliative care that is provided in care homes for the elderly.
Three major issues influencing the quality of care were identified. First, the most important problem is the lack of adequate information sent to the GP co-operative because there is no adequate method for the transfer of patient information. Second, the quality of out-of-hours palliative care is hampered by insufficient anticipatory care during office hours. Third, because no policy on palliative care has been developed by the GP co-operatives, calls from palliative care patients are not treated with priority and no additional time is available for home visits. Attitudes to palliative care have to be addressed to prevent careless behaviour ‘because there is nothing more to be done’.
The participants indicated that improvements could be made if GPs anticipate problems that could arise after office hours and provide relevant information to the GP co-operatives.
Strengths and limitations
This focus group study was intended as a preparation for further quantitative research among patients and GPs regarding the out-of-hours palliative care system in the Netherlands. We chose for qualitative description because there was no available information on the quality of out-of-hours palliative care in the Netherlands. Strength of the study is that the participating GPs in the three groups differed on relevant aspects, although GP trainers were overrepresented. There was a high level of agreement between the participating GPs for the most important themes, and we reached saturation after three focus groups.
A limitation of the study, due to our restriction to GPs, is that we do not know how patients, family carers or professionals other than GPs assess the quality of out-of-hours palliative care.
Furthermore, there was not much debate in the focus groups on personal continuity of care. This can be caused by the strong impact on out-of-hours care made by the GP co-operatives but it blurs the fact that several GPs provide out-of-hours palliative care themselves.
The participants in our study gave their time voluntarily; it is therefore likely that they had more than average motivation and interest in the subject, especially the participants in the third focus group who attended a conference on palliative care.
The participation of GPs from other European countries in the third group livened up the discussion. We had not intended to take their contributions into account in our analyses. Indeed, the organization of out-of-hours palliative care in their home countries differed widely from the Dutch situation. In retrospect, we might better have organized the third focus group into an inner circle of Dutch participants and an outer circle of foreign listeners.
Comparison with existing literature
While in a study in the UK several areas of concerns were raised about out-of-hours cover for palliative care patients (Citation12), the GPs in our study in the Netherlands assessed the quality of the palliative care provided by the GP co-operatives as meagre, and especially the quality of out-of-hours palliative care that is provided in care homes for the elderly.
Other findings of our study confirm the results from earlier studies. An anticipatory approach to care is most important; it helps to maintain care at home where it enables locums to arrive well informed at the patient's home. Out-of-hours handover forms are seen as having contributed to better communication between in- and out-of-hours services (Citation19). A high percentage of both nurses and GPs in an Australian study agreed that standardized written patient protocols would improve out-of-hours services (Citation10). Although these protocols could improve out-of-hours services if on-call staff, including locums, has access to them, GPs do not routinely provide these for the GP co-operatives (Citation11,Citation12,Citation20). Problems apparently experienced by family carers were associated with poor provision of information and poor access to out-of-hours health care. Information on the provision of care during the out-of-hours period is helpful for patients and their carers (Citation21). Problems with the administration of the out-of-hours service, as having no access to medical records, have the potential to impact on the place of death (Citation22). Consistent with other studies is also the problem of lack of time for palliative care patients caused by the constraints of a busy out-of-hours service, where service configuration is based predominantly on acute illness situations and biomedical criteria (Citation21,Citation23).
In the context of current primary care provision, personal continuity of care is increasingly unlikely to be provided out-of-hours, but data in a UK study suggest that informational and management continuity, supplemented by good communication, may suffice (Citation21).
Implications
Future research should focus on the assessment of the quality of out-of-hours palliative care by patients and their carers. In the short-term, much might be accomplished by the development of an effective system of information management and transfer between the GP practices and the GP co-operatives.
Our findings suggest that GPs realize that anticipatory care is essential, and that continuity of care is only possible if information is transferred. GP co-operatives should also develop a policy on providing out-of-hours palliative care. The level of care that can be provided must be clear to GPs and patients. If adequate service can not be obtained from the regular out-of-hours service, alternatives, such as a special palliative care service, should be examined. A clear guideline on the transfer of information and more education in palliative care could bring further improvement in the quality of out-of-hours palliative care.
A point of concern is the quality of the palliative care that is provided in care homes for the elderly. Education of the nursing staff is needed.
Conclusion
This study explored some aspects of out-of-hours palliative care in the Netherlands. The participating GPs expressed their concerns about the quality of palliative care as provided by the GP co-operatives. They suggested that quality of out-of-hours palliative care in the Netherlands is meagre. Improvements could be made in terms of anticipatory care during office hours, adequate transfer of information, and the development of a policy on palliative care provided by the co-operatives. The results of this study call for a quantitative follow-up study.
Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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