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Abstract
Introduction For a patient nearing the end of his or her life, transfer from a nursing home to the ED can be inappropriate, with potentially negative consequences, but transfer in these circumstances is, regrettably, all too common. There is a lack of published literature exploring how paramedics make decisions in end-of-life care situations. This study aims to explore how paramedics make decisions when asked to transport nursing home residents nearing the end of their lives.
Methods Phenomenological influenced design with a pragmatic approach. Semi-structured face-to-face interviews were conducted with six paramedics in an English NHS Ambulance Trust and subsequent data collected by text message. Audio-recorded interviews were transcribed verbatim and analysed using a thematic approach.
Results Three themes emerged in relation to the decision to transport patients from nursing homes to EDs in end-of-life care situations. Paramedics identified difficulties in understanding nursing home residents' wishes. When a patient no longer had the capacity for decision making, paramedics' reasoning processes were aligned to best interest decision making, weighing the risks and benefits of hospitalisation. Paramedics found it challenging to balance patients' best interests with pressure from others: nursing staff, patients' relatives and colleagues.
Conclusions A range of factors influence paramedics' decisions to transport nursing home residents to EDs in end-of-life care situations. Decision making became a process of negotiation when the patient's perceived best interests conflicted with that of others, resulting in contrasting approaches by paramedics. This paper considers how paramedics might be better trained and supported in dealing with these situations, with the aim of providing dignified and appropriate care to patients as they reach the end of their lives.
- geriatrics
- nursing home care
- paramedics, clinical management
- prehospital care
- emergency ambulance systems
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- geriatrics
- nursing home care
- paramedics, clinical management
- prehospital care
- emergency ambulance systems
Key messages
What is already known on this subject
Nursing home residents nearing the end of their lives can be inappropriately transferred to hospitals, resulting in potentially negative experiences and undesired outcomes. There are no published studies providing an in-depth exploration of emergency medical service clinicians' decision making in end-of-life care situations.
What might this study add
Paramedics experience difficulties in understanding patients' wishes in end-of-life care situations. Best interest decision making presents challenges: balancing the patient's best interests against pressure from nursing home staff, relatives and colleagues. A dichotomy of approaches in managing patients approaching the end of their lives demonstrates the need for enhanced education and clinical support for paramedics in this area.
Introduction
For patients nearing the end of their lives, ambulance services may be called when sudden deterioration occurs, despite advanced care planning, the involvement of palliative care teams and a desire to avoid hospital admission. It is difficult to establish the percentage of emergency ambulance calls relating to end-of-life conditions, and published data are scarce.1 End-of-life care emergency calls are complex and conveyance to the ED is often viewed as the best decision. Hospital admission may be appropriate when patients' needs cannot be met at home, if their wishes change or when a reversible medical condition is identified.2 Alternative options available to UK paramedics include referral to a general practitioner (GP), community palliative care team or, if appropriate, conveyance to a hospice.
Determining a course of action is particularly complex when patients no longer have the capacity for decision making. This is a common situation in nursing homes where individuals often have impaired cognitive function which makes them susceptible to a loss of autonomy, dignity and control.3 Individuals can plan future care by making an advanced decision to refuse treatment or by appointing a lasting power of attorney, enacted if their capacity for decision making is lost. Although the numbers dying in nursing homes are increasing,4 residents can be transferred to hospital in their last days or weeks of life, against their wishes or interests.5 Admissions are predominantly unplanned, and therefore patients arrive by ambulance, with deaths not uncommon in transit or shortly after arriving in the ED.6 ,7
There is greater recognition of the role of ambulance services in contributing to the provision of end-of-life care, but this remains an emerging area of prehospital practice. The subject is recommended for inclusion within paramedic education curriculums;8 but it is a paradigm shift for a profession that has traditionally focused on intervening to save life. No published studies provide an in-depth exploration of emergency medical service (EMS) clinicians' decision making in end-of-life situations, but clinician experience has been identified as being influential.9 Limited findings have emerged from a UK study developing and evaluating an end-of-life decision support tool, but this is yet to be fully published.10 In their abstract, the authors describe paramedics' decision making approach as lacking consistency and being risk averse, resulting in resuscitation attempts or hospital conveyance. This study aims to explore how paramedics make decisions when asked to transport nursing home residents nearing the end of their lives.
Methods
A phenomenological approach influenced the methodology, with pragmatic adjustments in order to answer the research aim within time and resource parameters. Phenomenological research aims to understand a person's experience and perception of a situation or phenomenon. A purposive sampling strategy sought paramedics from the London Ambulance Service NHS Trust (LAS), and a snowball strategy used clinicians and managers to recommend individuals who were unaware of the researcher's background and views. In total 41 potential participants were recommended but 8 of these were excluded as they were known to the researcher. The remainder were sent a recruitment letter to their workplace; 10 replied but only 6 paramedics were able to participate. The participants were three male and three female paramedics, aged between 24 and 42 years, with EMS experience ranging from 2 to 8 years. Four held higher education qualifications, and none disclosed familiarity with the subject area.
Participants received an information sheet with full details of the study, had the opportunity to ask questions and provided written informed consent before data collection commenced. The setting for data collection used participants' workplaces, but interviews were held outside of their working hours; interviews ranged from 33 min to 1 h. Steps were taken to maintain participant confidentiality when permission was sought to use workplaces, and participant identification numbers were used to maintain anonymity. The study received approval from the University of Nottingham Research Ethics Committee, and Research and Development authorisation from the LAS.
Semi-structured interviews were undertaken by the primary author, using a schedule of six questions (see online supplementary appendix one) and photo elicitation. Two images were shown which depicted the context and type of patient the study referred to, prompting discussion and reflection from participants. The use of images is thought to produce different, deeper and more insightful information than words alone in interviews.11 Audio-recorded interviews were transcribed verbatim and notes taken after the interview and during transcription. These included reflections on the perceived influence of the researcher and ideas and concepts arising from data. It was considered that insights into the phenomenon would occur when responding to an emergency call and trigger ideas that may not have come to light during interviews. Participants were asked to text the researcher their experiences and thoughts after attending a call relating to the subject area. To maintain confidentiality participants' phone numbers were labelled with a study identification number, the phone was password protected and participants were instructed not to include personal or patient identifiable information. Two text messages were received, offering an emotive and precise account of the conflict one participant experienced when managing a nursing home resident nearing the end of life.
Supplemental material
Using a thematic data analysis approach,12 manual coding was undertaken by the primary author (see online supplementary appendix two). Codes and themes emerging from the data were reviewed by an academic researcher and a clinician specialising in the subject area. A reflective diary documented changes to coding and reflected on the meaning of data as it developed, thereby acting as an audit trail from transcripts to themes. A description of the themes was returned to participants for feedback with no requests for alterations received.
Supplemental material
The trustworthiness of the study was influenced by the primary author holding the position of an ‘insider’, being an experienced prehospital clinician, employed as a paramedic in the same trust as participants and having specialist education in the subject area. This enabled participants to be relaxed and converse as colleagues using everyday language, but impacted on confirmability. The researcher's clinical knowledge may have led to misinterpretations of responses and data may have been missed by not exploring concepts. To counter this, participants were asked to explain colloquial terms and confirm the researcher's interpretations. To reduce bias, the researcher adopted a reflexive approach, recording field notes and maintaining a research diary.
Results
Three themes emerged in relation to the decision to transport patients from nursing homes to EDs in end-of-life care situations.
The challenges in understanding patients' wishes
Paramedics expressed a desire to understand patients' wishes and expected these to be documented but felt that there were insufficient advanced care plans in nursing homes. Where documentation was available it was considered to be limited in content. Paramedics commented that it was rare to see patients' wishes noted and, where recorded, these were restricted to resuscitation decisions. The majority of paramedics commented that nursing home staff did not appear to know their patients well and were unable to describe patients' wishes. Frequently, the paramedics encountered patients unable to express their preferences verbally; on these occasions, the paramedics used relatives and friends to describe previous conversations where preferences were expressed.The care notes would tell me what medication she's on and what type of cancer if you are lucky and not any, anything else that would be it. Female Paramedic, 8 years EMS experience.
Actual detailed wishes are often not written down other than the official DNAR (Do Not Attempt Resuscitation). Male Paramedic, 8 years EMS experience.
Evaluating patients' best interests
When patients were not considered to have the capacity for decision making, paramedics described a desire to act in their best interests. Factors used to evaluate a patient's best interests were: their diagnosis, comorbidities, quality of life, wishes where known and current condition. Half of the paramedics were unable to describe how they calculated patients' best interests but all demonstrated a process of balancing the perceived risks and benefits of hospitalisation.Generally you would go on what you think is medically necessary for this patient, but with the least disruption possible. Female Paramedic, 7 years EMS experience.
The risks of conveying the patient included: causing psychological harm, such as distress and disorientation; or physical harm, such as discomfort from transfers between beds. These were balanced against the perceived benefits of meeting their clinical needs, reducing suffering, providing reassurance and accessing care not available in the community. In addition there was a perceived risk of not transporting the patient; most paramedics raised concerns about care provision in some nursing homes. Although rare to have safeguarding concerns, if the paramedics felt that the patient was not receiving adequate care, they would transport the patient to hospital.Whether you think the nursing home is a safe place to leave them … either based on your experience of that nursing home or just on an assessment of the handover that you get, and what appears to be their general care. Female Paramedic, 7 years EMS experience.
Weighing risks versus benefits was interlaced throughout paramedics' narratives. Patients' best interests were prominent but, on occasion, in conflict with the best interests of others.
The influence of others on decision making
The paramedic's decision about conveyance was subject to external influences from nursing home staff, patients' relatives and other paramedics. Discord between individuals' competing interests was frequent and resulted in decision making becoming a process of negotiation.
Several paramedics had felt under pressure from nursing home staff to transport the patient to the ED and described a perceived lack of willingness from staff to nurse patients who were dying. There was recognition that nurses desired conveyance in order to meet patients' clinical needs, but paramedics suggested that nurses feeling unable to manage or not qualified enough to nurse patients who were dying may also contribute.I think often there is pressure from staff, that they don't, being blunt about it, they often don't want a dead body in the nursing home. Male paramedic, 8 years EMS experience.
Some nurses will say ‘I can't take the risk’. Female paramedic, 7 years EMS experience.
One paramedic described a situation by text message. Nursing home staff had called an ambulance to convey a patient who was in an end-of-life situation, but the patient's spouse was angry and disagreed. The paramedic arranged for the GP to assist in managing the patient in the nursing home but received a negative response from nursing staff.Staff were unhappy because it meant they had to provide one-to-one care and actually look after someone dying. Male Paramedic, 7 years EMS experience.
All of the paramedics described actively seeking involvement from patients' relatives in decision making but remained aware of the potential bias arising from relatives' wishes. Families' requests for the patient not to be conveyed were accompanied by an acknowledgement that the patient was nearing the end of his or her life. On other occasions, relatives insisted on conveyance to hospital in the hope that treatment would extend life, despite this being against the patient's wishes. The paramedics expressed contradictory views regarding this latter scenario: some described advocating for the patient or seeking an alternative solution.I would give them all the information, I would suggest this is not in the patient's best interests but if they insist you are on rocky ground. Male Paramedic, 8 years EMS experience.
I think even if people don't have capacity if their feeling is they don't want to go to hospital it's not for them to be taken against their wishes … I would try and find a less, kind of intrusive method. Female Paramedic, 7 years EMS experience.
Other paramedics described adhering to relatives' wishes, in the knowledge that this opposed the patient's preferences.So if she's ill and she says she wants to stay at home and the family want her in and I think she's sick enough to go in, she goes in, even though she said she wants to stay. Female Paramedic, 8 years EMS experience.
This difference in practice among paramedics also reflected the influence, and at times tension, that colleagues generated on the decision to convey a patient. Five of the participants identified situations where other paramedics had an alternative approach to theirs, including conveying patients against their perceived best interests.There are definitely two poles of how these end of life patients are treated. One seems to be we will respect the patient's wishes, we will get anyone and everyone involved that we can. There doesn't seem to be a middle and the other end is you're not well, you're coming to hospital. Male Paramedic, 7 years EMS experience.
Uncertainty in decision making was evident, and several participants sought confirmation from others about what actions to take. Conveying the patient to hospital was seen to afford protection, remove responsibility and avoid potential complaints or legal proceedings.The person who is incapacitated is not going to complain about your treatment but their family may well do. Female Paramedic, 2 years EMS experience.
Discussion
This study explored how paramedics make decisions regarding hospital conveyance for nursing home residents nearing the end of their lives. Although patients' preferences featured broadly throughout interviews, their influence on decision making was not prominent. Paramedics encountered difficulties establishing patients' wishes; findings suggest this may be due to the inability of patients to communicate, uninformed care staff and limited documentation of patient preferences. Knowledge of patients' and families' preferences for care has been associated with reduced hospitalisation from nursing homes for patients nearing the end of their lives.13 Conversely, hospitalisation is the ‘default’ option when access to clinical or background information is poor or where details are inadequate.14
Paramedics face a challenging situation when attending to a patient approaching the end of his or her life, who is experiencing a crisis. Most commonly they have never met the patient before and do not benefit from existing knowledge of the patient's medical history or preferences for care. The participants recognised that a lack of documentation in nursing homes restricted their decision making, and their experiences suggested poor use of advanced care plans in nursing homes. There is variation in the use of advanced care plans in such care environments, but they have been shown to reduce admissions and deaths in hospitals.15 ,16
Concerns about poor care in nursing homes and a perceived lack of willingness by staff to nurse patients who are dying resulted in hospital conveyance. It is unknown how widespread these beliefs are among paramedics, and their views may reflect a lack of understanding by participants about the demands of caring for the dying. There is limited literature exploring transfer decision making by UK nursing home clinicians, but low staffing levels and staff competency to manage a person's dying process can be influential.7 Nursing home clinicians may lack the skills or confidence to meet the physical or psychological needs of patients who are dying and support is diminished due to a deficiency of local palliative care specialists and medical supervision for nursing homes.17 These complex issues may affect the decision to transfer a resident to hospital; due to the pivotal role of nursing home clinicians, it is essential to examine influences on their decision making.
Similar to Munday et al,18 this study suggests that paramedics' decisions regarding conveyance from nursing homes are based on a judgement of patients' best interests. Participants' deliberations were in line with requirements of the Mental Capacity Act,19 establishing the person's past or present wishes, consulting others and seeking the least restrictive option. Descriptions of these reasoning processes were, however, unstructured, limited in their depth and did not describe some mandatory principles. Making best interest decisions can be extremely challenging, particularly for this professional group who have restricted time to gather and process often limited information. It is essential that paramedics are aware of the steps to follow in making such decisions, to ensure they are acting in patients' best interests and also to protect themselves from legal liability when making decisions on behalf of those who lack capacity.
The participants did not demonstrate a consistent approach to decision making in end-of-life care situations, comparable to Munday et al.10 When patients' preferences differed from their relatives' wishes, the participants reported contradictory attitudes. Some adopted an advocacy position and person-centred approach, embracing a concept of care that is holistic, individualised, respectful and empowering.20 Other participants abided by relatives' opinions and conveyed the patient against his or her wishes. Compliance with relatives' requests over patients' has been identified with other healthcare professionals21 ,22 and fears of litigation have been identified as justification.23 The suggestion that relatives held authority due to their capacity to complain was not a widespread opinion but hospital conveyance was seen to provide professional protection and relieved responsibility. These findings mirror paramedics' conveyance decisions for other conditions.24 ,25
Conveyance to hospital against patients' wishes may be more often due to uncertainty in paramedics' decision making, a lack of confidence or feeling unsupported. The expectation for paramedics to treat and refer in complex end-of-life care situations, rather than to revert to the instinctive position of hospital conveyance, is a relatively recent evolution for the profession. This novel area of prehospital practice requires a multifaceted approach to education and specialist clinical support. Providing paramedics with the knowledge and confidence to make appropriate, person-centred decisions for those nearing the end of their lives will encourage a culture change from the ‘safety net’ of hospital conveyance. Proposed changes to the emergency and urgent care system in England will seek to develop ambulance services to become ‘mobile urgent treatment services’, where paramedics treat more people at home in order to reduce pressure on EDs.26 While many paramedics are prepared for an advanced role, this study suggests that a proportion of the workforce may not feel prepared, empowered or skilled to make such discharge decisions. Further research in this area could inform education, enhance paramedics' security in decision making and aid preparations for a changing role.
Limitations and methodological discussion
This study is limited by a small sample, recruited from one ambulance service. It is unknown why other paramedics declined to participate but potential reasons include: the demands of shift work, the need to participate in their own time or a lack of interest in the subject area. Transferability is restricted by recruitment at a single site, and temporal transferability of findings is limited as developments in prehospital care continue. The study relied on participants' accounts to provide an understanding of the phenomenon and was unable to account for differences between their narratives and actual practice. The use of text messages produced a small amount of contemporary data but was limited in describing a complex situation, restricted deeper understanding and without non-verbal cues was open to misinterpretation. Numerous accepted techniques, which decrease bias in qualitative studies, were employed. These included a review of recorded data analysis decisions to enhance confirmability and dependability and ensure interpretations were justified. The use of respondent validation augmented the credibility of findings and quotes from a range of participants evidenced inferences made.
This study has identified a range of factors influencing paramedics' decisions regarding the transport of nursing home residents to EDs in end-of-life care situations. Paramedics highlighted challenges in understanding patients' wishes, and with limited information available their reasoning processes were aligned to best interest decision making. In balancing the interests of others decision making was frequently a process of negotiation, highlighting the dichotomy of approaches adopted by paramedics in managing patients approaching the end of their lives. Further research of a mixed methods design is warranted to determine what influences nursing home clinicians' decision making and to investigate the availability and value of advanced care plans for paramedics in emergency situations. To improve conveyance decision making, it is essential to understand what paramedics consider the risks and benefits of hospitalisation to be and to further explore how best interest judgements are made. This will help to ensure that when a crisis occurs more people can achieve a death with dignity and in a place that is appropriate to their needs and preferences.
Acknowledgments
The main author would like to thank David Whitmore for his encouragement, support and review of data analysis themes and Joanna Shaw for commenting on the final draft. Sincere thanks to the paramedics who freely gave their time to participate in the study.
References
Footnotes
Contributors Both authors contributed to the design of the study and the analysis and interpretation of data. GM-J drafted the final version, which was critically edited and approved by both authors. Both authors accept responsibility for content.
Funding GM-J received funding for an NIHR Masters in Clinical Research Studentship while this research was completed.
Competing interests All authors have completed the ICMJE uniform disclosure form and declare: GM-J had financial support from the National Institute for Health Research for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous 3 years; no other relationships or activities that could appear to have influenced the submitted work.
Ethics approval University of Nottingham Research Ethics Committee.
Provenance and peer review Not commissioned; externally peer reviewed.