Abstract
Abstract
Background:
There are no nationally agreed criteria for admission to specialist palliative day care (SPDC). Previous work has called for future research to qualitatively examine why health and social professionals make referrals to day care. Therefore the current study aims to address this question using semistructured interviews to gain first hand accounts of referrers' reasons for making referrals to SPDC.
Design and method:
The reasons for referral to SPDC of eight professionals were explored using semistructured interviews. An exploratory methodology (interpretative phenomenological analysis [IPA]) was used to analyze the data to allow for an in-depth investigation.
Results:
Six main themes were apparent with regard to referring a patient to SPDC: physical, social and psychological well-being, continuity of care, introduction to the hospice environment, and caregiver respite.
Conclusions:
This study provides an insight into reasons for referral to SPDC. Referrers value the multiprofessional team, the holistic approach to care as useful to managing difficult, complex, and persistent problems in patients wishing to be cared for in the community. Additional benefits include a helpful introduction to hospice services and much needed regular respite for caregivers. Future research into patient and professional perceptions of the process of referral to SPDC could be useful. Expansion of the current study could contribute to the development of a standardized referral tool to be used in conjunction with referrers' clinical judgment.
Introduction
Research regarding criteria for referral into SPDC is very sparse. Gysels and Higginson 2 carried out a systematic review to determine the current state of evidence on interventions to improve service configurations for the supportive and palliative care for those affected by cancer. This review concluded that there were no studies of referral into day care services. NICE therefore published guidance on Improving Supportive and Palliative Care for Adults with Cancer, 3 which advocated programs of research into palliative day care that initially focus on access issues. This guidance also stated that “teams should develop referral guidelines for services they offer.”3(p41) More recently the Association of Respiratory Nurse Specialists published “Specialist Palliative Care Referral Guidelines and Symptom Control for Patients with End-Stage Chronic Respiratory Disease.” 4 This guidance identifies the criteria and circumstance necessary to refer a patient to specialist palliative care. Guidance such as this promotes reliable, consistent, and appropriate referrals, however, in relation to day care services, more research is needed to understand reasons for referral before an equivalent guidance can be generated.
Subsequent to the NICE guidance 3 a descriptive study investigating referrals to a voluntary sector cancer day care centre reports that the five most common reasons for referral were: breathlessness; support; anxiety; complimentary therapies and counseling. 5 The authors called for future research to qualitatively examine why health and social professionals make referrals to day care. The current study aims to address this question using semi-structured interviews to gain first hand accounts of referrers' reasons for making referrals to an SPDC center.
Method
A qualitative methodology was used. 1:1 semistructured interviews were conducted and analyzed according to interpretative phenomenological analysis (IPA), which allows examination of the individual experience, 6 in this instance referring a patient to SPDC.
Participants
The main external health care professionals who refer to one of two SPDC centers provided by one hospice in the northeast of England were identified. Potential participants were purposively approached in an attempt to interview clinicians from all groups. Participants included eight referrers (two males) to SPDC; one general practitioner, two hospital-based specialist palliative care nurses, four community-based specialist palliative care nurses, and one heart failure nurse specialist who worked in both community and hospital settings.
Data collection
Research governance and ethical approval was gained in conjunction with an associated patient-interview project. Written consent was obtained from participants prior to the interview. Following the interview all participants were given a debrief sheet to thank them and provide contact details should they wish to discuss any aspect of the research. Audio recordings of interviews and transcriptions were stored in keeping with data protection requirements.
Data analysis and validation
This study utilized an IPA approach. IPA places no importance on whether participants' accounts are “right” or “realistic,” as IPA researchers believe that individuals can experience the same phenomena, but in vastly different ways. 7 This is a potential criticism of IPA methodology because it leaves it open to researcher bias. However by acknowledging the researcher's role in conducting and analyzing the research it allows researchers to undergo a process of “bracketing,” which involves the researcher acknowledging their biases and then setting these aside in order to focus and reflect on participants' experiences, 8 this was carried out in this study in the form of a reflective diary.
Transcribed interviews were checked for accuracy by comparing them to original recordings. The interviews were then read through once noting any themes relating to reasons for referral. Stated reasons for referral were then listed and clustered into broad themes. Themes were checked for consistency and to address any discrepancies by D.F. and M.J., feedback was incorporated into data analysis.
Results
Participants in this study described a variety of reasons for making a referral to SPDC. Six main themes were apparent: physical, social and psychological well-being, continuity of care, introduction to the hospice environment and carer respite. They are laid out and illustrated with verbatim examples in Table 1. There were no formal referral criteria for the SPDC service setting studied, and some referrers interviewed recognized that their own preconceptions may limit access for some patients who may otherwise benefit from attendance.
Names are pseudonyms.
HB, hemoglobin.
Physical well-being
Also lots of problems with the medication and getting lots of side effects we maybe think an assessment by the palliative care team would help.—Jane
Participants outlined reasons for referrals that focused around physical aspects of patient care. They found SPDC useful in that it provided opportunities for patients to access a wide variety of services including physiotherapy, occupational health and medical reviews. Patients were also able to access facilities such as aided bathing, infusions, pain and symptom management, and medication reviews.
Psychological well-being
They might be feeling quite down so that's one of the reasons.—Jane
Participants used reasons such as giving patients a “role,” “sense of purpose,” “hope,” and “psychological support,” these reasons were particularly in relation to patients who had lost confidence due to their illness and were having problems adapting to their life circumstances.
Social well-being
Feeling socially isolated or lives alone and has very few support networks.—Ian
The social aspects included giving isolated and/or housebound patients the opportunity to leave the house and interact with others.
Continuity of care
If I'm not going regularly at home then that's a good reason for referral, someone to keep an eye on them.—Caroline
Participants described using SPDC to ensure patients receive continuity of care as a reason for referral; this seemed particularly so for complex patients with a variety of needs whose care would benefit from regular and input over time.
Introduction to hospice environment
I've referred because they're so frightened of hospice but you know they're going to need that service at some point and once they've gone over there they're really pleased they've been so it's breaking them in gently.—Louisa
Referral to SPDC also seemed to serve as an introduction for patients to the hospice environment. Patients were frequently reported by the participants to have preconceived ideas about the hospice, expecting it to be a gloomy place full of people talking about their illness. However, participants expressed a need and desire to dispel these beliefs, because they felt it was important for patients to become familiar and comfortable in the hospice in order to prepare them for the possibility that they may need a hospice bed at a later date.
Caregiver respite
Just the partner or somebody who is struggling with coping with them every day and just needs some time to go shopping or to have a but of “me” time.—Roy
Finally, participants frequently talked about the value that referring a patient to SPDC has for their caregivers, family or friends. Not only did the referral give caregivers, family, and friends a break and time to do what they wanted, but it also gave them validation that the task they were undertaking was difficult at times and that they deserved to be considered in the context of patient care.
Discussion
Referrers recognized the clinical skills of the SPDC staff and its holistic approach as being helpful in the management of patients with complex and persistent problems that were proving difficult to manage in the community setting, especially when caregiver burden was also a concern. Easy, regular access to the multiprofessional team as a way of streamlining care was seen as helpful, and the use of SPDC attendance as a nonthreatening way of introducing hospice services rather than an in-patient admission that patients may still misperceive as only for the imminently dying.
Participants in this study were able to outline a variety of reasons for making a referral to SPDC. These included physical, psychological, and social reasons reflecting the bio-psychosocial approach to assessment and referral, inherent in a palliative care approach. 9 Interestingly there seemed to be some difference in participants' willingness to refer patients for purely social benefits as opposed to physical reasons. Some participants very readily gave social reasons as their primary reason for referral. However, others expressed the opposite and whilst acknowledging that social benefits were important they would not make a referral based on only social need and would require a physical reason for making the referral. Possible explanations from this could be drawn from the professions and background of referrers, as well as their experiences of referral. Research shows that referral to palliative care is influenced by the knowledge and education of health and social care professionals. 10 Japan is taking steps to address this issue with the development of an instrument to assess palliative care knowledge among general physicians and nurses. 11 This measure combined with education programs may reduce the differences between referrers shown in this study. Another reason could be a perception that SPDC is a scarce resource, and that some referrers gave priority for physical over sociopsychological problems; an interesting observation given the equal importance given to the different domains in SPDC itself.
Considering the decision-making process regarding referral to SPDC, participants used a variety of idiosyncratic decision making methods to assess the need to refer. These included getting to know the individuals, using intuition and personal checklists. There were no reports of a systematic tool that could be used by any referrer to aid this decision. This may leave the referral process vulnerable to bias due to personal judgments with little evidence base. There has been a move away from such professional paternalism toward joint patient–professional decision making in the current health care environment. This idiosyncratic referral decision-making may leave the process open to human error. A standardized assessment and referral procedure may allow more consistency in the referral pathway and reduce referrer bias by acting as a prompt even if the referrer may not have thought of SPDC for an individual. However, clinical judgment remains a valuable part of the decision-making process allowing focus on the changing needs of a patient and their caregivers. Therefore any standardized tool should be used in conjunction with individual clinical assessment.
The referrers' study was carried out in conjunction with a larger study examining patients' views of attending SPDC in relation to their ability to cope. 12 Many of the themes were evident in both the patients' and referrers' accounts. For example patients valued having easy access to medical care from SPDC staff and this is mirrored in the referrers' physical reasons for referral. Patients appreciated a sense of belonging, companionship, opportunity to meet people in a similar situation and to draw strength from observing them cope; these accounts again closely reflect referrers' reasons for referral.
Limitations of the study
Despite acknowledgement that no single interpretation of the interviews would be definitively “right” participant feedback would have strengthened the credibility of the findings in this study.
It would have been interesting to have interviewed general practitioners who did not refer to SPDC, and other hospice staff who may refer to SPDC such as in-patient unit staff and hospice consultants. This may have revealed different aspects of knowledge and attitudes regarding SPDC. The number of respondents in any profession is small, although saturation of themes appears to have occurred. The study is not generalizable because of its qualitative nature; however, there did seem to be a large amount of similarity between participants. This similarity may have been aided by the reports of a high level of communication between the SPDC center and the referrers, which was valued by participants.
Conclusion
This study provides an insight into reasons for referral to SPDC. Referrers value the multiprofessional team, the holistic approach in the management of difficult, complex, and persistent problems in patients wishing to be cared for in the community. Additional benefits include an introduction to hospice services and much needed regular respite for caregivers. However, referral decision-making is idiosyncratic and open to paternalism; deciding for the patient who will and who will not benefit.
Future research into patient and professional perceptions of the process of referral to SPDC could be useful. Expansion of the current study could contribute to the development of a standardized referral tool to be used in conjunction with referrers' clinical judgment.
Footnotes
Acknowledgment
The authors would like to thank all the participants who contributed to this research.
Author Disclosure Statement
No competing financial interests exist.