Why are some patients in treatment for advanced cancer reluctant to consult their GP?

Abstract

Objectives. To analyse cancer patients’ views and perspectives on mechanisms and barriers to involving the GP in the late treatment phase of advanced cancer. Design. Qualitative, semi-structured interview study of 16 patients with advanced cancer and their next of kin. Seven patients were re-interviewed after six months and three after 12 months. Setting. Patients’ home in Region South, Denmark. Results. The cancer patients described how they developed a personal relationship with the staff at the cancer treatment centre. They also described some kind of dependability towards the hospital staff and therefore consulted the doctor or the staff at the cancer treatment centre before seeking advice from their GP. Some patients found that the GP was not familiar enough with the treatments given; others that they did not want to inconvenience the busy GP with what they perceived to be minor non-treatment-related matters. However, as the disease progressed they also described how they perceived unmet psychosocial needs. After ending chemotherapy, re-establishment of the contact between patient and GP was in this study dependent on a proactive attitude by the GP. Conclusion. GPs are important for cancer patients’ possibility of staying at home and dying at home. This study, however, shows that due to some patients’ barriers special attention is needed to guarantee the switch over from the cancer treatment centre to home-based end-of-life care. This is increasingly important as cancer patients to a still larger extent receive hospital-based, active treatment until shortly before death.

• Advanced cancer
• chemotherapy
• family practice
• gastrointestinal cancer
• patient–doctor relationship
• primary palliative care

A majority of terminal cancer patients wish to die at home or at least spend as much time as possible at home [1–3]. Persistent involvement of GPs in end-of-life care increases the possibility of patients staying at home and dying at home [4–8]. Often, however, GPs lose contact with their cancer patients after the diagnosis [9], and if the hand-over from hospital to the primary sector is unsuccessful, the GPs might get involved too late to organize end-of-life care, resulting in hospital deaths. This is increasingly important as cancer patients to a still larger extent receive hospital-based, active treatment until shortly before death [10]. Reasons for a marginalized role of the GPs in home-based end-of-life care are not well described. One of the reasons, published in a Danish focus-group study of GPs [11] was that the hand-over procedure mainly took place at nurse level. Further, that the GPs were easily marginalized if in their working method they were what we could label reluctant, i.e. did not have a reaching-out approach (proactive approach). However, even more important is that patients’ views and perspectives on mechanisms and barriers to involving their GP in late-stage cancer are only sparsely analysed.

GPs are important for late stage cancer patients’ possibility of staying at home and dying at home. However, little is known about mechanisms and barriers to cancer patients involving their GP in the late treatment phases.

• Patients with advanced cancer developed strong relationships with the hospital staff at the cancer treatment centre.

• The strong relationships can get in the way of re-involving the GP post-chemotherapy.

• Patients with advanced cancer had increasing unmet psychosocial needs as the disease progressed.

Patients facing terminal cancer experience a period of prolonged functional decline with gradual loss of social activities, loss of strength, and loss of bodily appearance, associated with emotional distress and often social isolation. In this landscape of losses, the attachment theory originally developed by John Bowlby can be used [12], [13]. In the interviews we will (through the binocular of this theory) analyse whether the multiple losses of the patient might play a role in the way they act.

The aim of this study was to analyse cancer patients’ views and perspectives on mechanisms and barriers to involving the GP in the late treatment phase of advanced cancer.

Material and methods

Basic mechanisms for interpersonal relations are challenged when facing terminal disease. We meet, according to Irwin D. Yalom [14], what he identifies as the four “ultimate concerns of life”: death, freedom, existential isolation, and meaninglessness. The attachment theory which we use in this analysis provides a descriptive and explanatory framework for understanding basic interpersonal relations facing these ultimate concerns of life.

A total of 12 male and four female patients were interviewed, screened among all 31 patients targeted for chemotherapy on two consecutive days in October 2006 in an oncological outpatient clinic in Denmark. Mean age was 64.8 (range: 50–80). Six patients had rectal cancer, eight had colon cancer, and two had pancreatic cancer. Except for two, all interviews were conducted together with the closest next of kin, i.e. wife or husband and in one case a daughter. The two interviews without next of kin were with persons living on their own. The interviews incorporated semi-structured as well as structured questions about the events leading up to the diagnosis. At the first interview, the first part of the interview was unstructured and invited the patient to explain the process by which the diagnosis was established. Key actors in the process of diagnosis were characterized with special emphasis on the role of the GP. The second part of the interview was a set of questions related to what needs the patient and the next of kin felt at the present moment regarding services from the healthcare system. Some questions tried to unfold unmet needs in daily life. In the later interviews (after six and 12 months) the focus was on clarifying unmet needs and on analysing the contact with the GP. All transcripts (using NVIVO 7) were coded and categorized following four steps: (1) reading all the material to obtain an overall impression, (2) identifying units of meaning, representing different aspects of patients’ perceptions of needs, and coding for these, (3) condensing and summarizing the content of each of the coded groups, and (4) generalizing descriptions and concepts reflecting participants’ needs [15], [16].

Results

Barriers to consulting the GP: Patients developed strong relations with the hospital staff, especially the treatment nurses, throughout the chemotherapy treatment period

The cancer patients described how, due to the close relationship with the staff, they developed a relationship that meant a lot to them. The personal contact between the patient and often the same nurse at the treatment centre was an important interpersonal relationship. For instance, the day before the next treatment, which was often once a week, the nurse phoned the patient to ensure that the patient was fit for an additional dose, and the cancer patients and their next of kin described how, in the case of health-related topics of concern, which were often side-effects of the chemotherapy, they sought advice from the hospital staff, sometimes from the doctor in charge but more often from the nurses. They described how the nurse found solutions to everyday problems caused by side-effects, such as an ointment to relieve burning or itching skin, or gave them for example gloves to take with them. Also a general attitude by the staff towards giving hope was highly appreciated:

… yes, they phone you and ask how you are feeling, tell you that your blood tests are OK. I have great respect for this. I think they do it very well. The nurses know who is coming, they welcome you. (B1, 1st interview)

… they are good at that … raising your spirits … both the doctors and the nurses …. I would say you could use them as role models. They are incredibly careful and fantastic at keeping up one's spirit. When I come to the centre … it is as if they have been waiting for me to come … and when you are in treatment … they phone you every Friday – it is of course to make sure that you come on the following Monday … however, they do it incredibly well. (B12, 1st interview)

… the hospital doctors … I feel it must be the right line of command, before I see my GP. (Patient B12, 2nd interview)

GP not familiar with treatment given

Some patients were reluctant to see their GP because they thought or had experienced that the GP was not familiar enough with the treatments given or they had tried to consult their GP with unsatisfying result:

Not used my GP, he does not know the treatments I receive. (Patient B4, 2nd interview)

My GP is not up to date. (Patient B5, 1st interview)

I think he has withdrawn from this, I think he is of the opinion that the contacts I am going to have about this, it's much better at the hospital. (Patient A3, 1st interview)

Patients not considering that they might use the GP for non-biomedical or non-treatment-related matters

Some patients did not want to inconvenience a busy GP. They did not want to disturb the GP for what they mentioned as minor matters:

And I do have the respect that you just do not see your GP for small matters … it is how I feel, you don't do that … they are so busy …. (Patient A9, 2nd interview)

Increasing unmet psychosocial needs as disease progressed

A clear trend was found throughout the interview series. In the first interview, many patients and next of kin were to a high degree focused on physical side effects of the palliative chemotherapy. Some were suffering from loss or change in social relations or possibilities of social activity while others kept on doing their normal sports, relations etc. However, as time passed, preoccupations of the closest family became more predominant; the interviews became more intense and revealed more existential topics and concerns. Patients did not the find opportunity to discuss these issues in the busy cancer treatment centre, or did not for example ask for a separate room:

A lot of times I need to talk. Then I decide on my way to the hospital that I want to talk with one of the staff – it might be something physical or something psychological – but the problem is that I share a room with others, the room is filled with people and I don't want to share my problems with the others in the ward, so I don't say anything. (Patient A6, 3. interview)

The possibility of using the GP was considered:

But it is possible that the talk I miss with the hospital doctors I could get from my GP. I could pay him a visit. Then he could discuss my case with the oncologist, take a few days to make himself acquainted with the situation, maybe go into details with the hospital doctors about specific questions I have. He could then follow my case and support me, that's some of the thoughts I have had. (Patient B1, 2nd interview)

Discussion

Statement of principal findings

Several patients with advanced cancer developed a strong relationship with the staff at the cancer treatment centre which might have got in the way of reintroducing the GP post-chemotherapy in end-of-life care.

Strengths and limitations of the study

The strength of this study is that we focused on the patient perspective and that we followed cancer patients and their next of kin over time. However, there are some limitations to the study that deserve consideration. First, the aim of the study was to analyse patients’ views and perspectives on mechanisms and barriers to involving the GP as long as they receive advanced treatment for their advanced cancer. The study was conducted by an oncologist and a GP with the overall aim to improve shared care of these patients [17]. The angle of the investigation is without doubt coloured by the position of the researchers, reporting the findings most appropriate for the shared care situation, and also by our medical background, i.e. a sociologist might read other information into our empirical material. However, throughout the interview we made sure that the impression we had got of the information was in accordance with the patient's intention by asking questions like “Have I understood you right …?” and by repetition using the patient's own words. Second, there were some dropouts in the time series. Dropouts in our study were due to patients not wanting to participate any more due to being too weak, being in a terminal phase, or our own reluctance to re-interview some of the patients still in treatment, expecting no additional information. We had from the start put a limit on the data-collection period (12 months), and seven patients were still in active treatment after one year. Dropouts are a well-known problem in palliative care research [18]. Third, the majority of the cancer patients in this study are men. This is both a strength and a weakness of the study – a strength because the male needs and preference for support in serious life-threatening disease are less well described. It is known that men are more reluctant than women in healthcare seeking [19–21]. This approach was found again in our study. Our male patients did not actively seek their GP to discuss the course of their disease nor did they incorporate the GP as an active fellow actor although they told us that they actually needed to discuss more personal and existential matters as the disease progressed. However, whether the reluctance is caused by the male gender or some other mechanism could be discussed. Reluctance to see the GP after cancer treatment has recently been discussed among cancer patient survivors [22]. The article describes how the biomedical discourse in the cancer treatment centre influences the cancer patient and can make the changeover difficult after chemotherapy from specialized hospital-based services to primary care, i.e. the GP and community care services. This is another mechanism for delayed or obstructed shared care. Furthermore, we assume that a general trend in society towards specialized care might also play a role.

Findings in relation to other studies

Few studies have focused on patients’ views on the GP role in the late treatment phase of cancer and especially the changeover to home-based end-of-life cancer care. In general, patients with cancer ask for, in relation to the GP, continuity of care and information that is patient-centred and holistic [23], as well as symptom control. There is some evidence that when patients have had a long-term relationship with their GP they will use the GP for clarification and reassurance throughout the cancer trajectory [24]. However, with no past history of illness or developed relationship to the GP or even mistrust, it is obvious that there is a risk of hampered home-based care.

In our study we found over time an increasing need for psychosocial support. Psychosocial needs are often unmet in cancer treatment [25], [26] and in cancer treatment centres psychosocial domains (aspects of managing daily life, emotions, and social identity) were among the highest perceived supportive needs for cancer patients in treatment as well as after treatment [27], [28]. Psychosocial issues figure increasingly as the disease progresses [29] and it is found that emotional distress ranged highest in a study focusing on thoughts of suicide in cancer patients [30]. Our study confirms the importance of recognizing needs for psychosocial support as the cancer disease progresses, as for our patients, throughout maybe a number of palliative chemotherapy series. For some patients the GP could be a key actor providing the necessary assessment of potential psychosocial needs all the way through specialized cancer treatment.

The GP role in late-stage cancer probably depends on several factors: The previous patient–GP relationship, GP expertise and feeling comfortable with late-stage and end-of-life cancer care, and, as we found in this study, some patient-related factors which call for a proactive approach by the professionals.

Implications for clinical practice and further research

The study contributes to the knowledge concerning changeover from the cancer treatment centre to primary healthcare.

The oncologists at the cancer treatment centre need to actively reassure the patients that the GP is committed to end-of-life care. The GPs have to be aware of the needs of the patients even though they do not contact the GP whilst they are receiving anti-neoplastic treatment.

In research, models for detecting and handling gradually increasing psychosocial issues of late-stage cancer patients need to be developed and tested and organizationally to analyse what role the GP can and should play.

Acknowledgements

This study was funded by the Novo Nordisk Foundation.

The authors would like to thank the participating patients and their next of kin for opening their doors and letting them share some of their worries and considerations. They would also like to thank the oncology staff at Odense University Hospital for their collaboration. Finally, thanks are offered to Lise Stark for proofreading the manuscript.

None of the authors has any conflict of interests to declare.