Author:

Keywords:

Science & Technology, Life Sciences & Biomedicine, Health Care Sciences & Services, Health Policy & Services, Public, Environmental & Occupational Health, QUALITATIVE RESEARCH, TRANSCENDENCE, PEOPLE, ISSUES, HOME, Adaptation, Psychological, Aged, Aged, 80 and over, Attitude to Death, Attitude to Health, Communication, Europe, Existentialism, Female, Health Facility Environment, Health Services Needs and Demand, Humans, Life Change Events, Male, Middle Aged, Models, Psychological, Neoplasms, Nursing Methodology Research, Palliative Care, Philosophy, Medical, Qualitative Research, Surveys and Questionnaires, Terminally Ill, Uncertainty, 1110 Nursing, 1117 Public Health and Health Services, Gerontology, 4203 Health services and systems, 4205 Nursing, 4206 Public health

Abstract:

Background Palliative care is a discipline within current health practice which aims to provide an integrated and holistic approach to care for patients with irreversible disease [ often termed life-limiting illness] and support to family and carers beyond the patient’s death. This requires a multidisciplinary team approach which can define resources to address a breadth of physical and psycho-social needs. The historical basis of palliative care is found in the seminal work of Cicely Saunders in the 1960’s in England, Her aim to improve the care of dying patients instigated the hospice movement from which palliative care as an umbrella term for all end-of-life care grew in the 1970’s. Contemporary interpretation of her model of practice varies widely across Europe. However, the use of the term “palliative care” in 2007 is not clearly determined and has led to debate in the literature about its current interpretation by both practitioners and patients. In particular, it has been argued that the influence of biomedicine in palliative care has led to a concern that hospice has lost its role in providing care for dying patients at the end-of-life and challenges its fundamental goals. The strategic points in a patient’s illness which indicate the shift to life closure are increasingly blurred by new language, such as supportive treatments and the reversibility of symptoms. There has been a call within the healthcare literature to articulate the impact of this language and the shifting dynamic of contemporary palliative care more clearly. This is especially important for patients as they move towards the terminal phase of their illness, a time when clear communication is essential. There is limited data which provides evidence regarding patient experience in palliative care, often attributed to the fact that their vulnerability and potential frailty prevents them from engaging in research. From this background, we proposed three objectives to answer the research question: “How is the transition experience towards end of life described by European advanced cancer patients?” The objectives were (1) To document and understand advanced cancer patients’ experiences of transition in a palliative/hospice care context (2) to identify factors which both help and hinder advanced cancer patients’ transitions in a palliative/hospice context, and (3) to analyze those experiences in the context of current palliative care development in Europe, as a means to inform practice. Method Through a qualitative design, based on a hermeneutic phenomenological framework, we proposed to explore the transition experiences of 120 advanced cancer patients across six European countries; United Kingdom, Ireland, Italy, Spain, The Netherlands and Switzerland. A final sample of 100 patients participated in the study. A semi-structured interview was created and validated through a process of reciprocal translation using dyads of translators working simultaneously in the original and target languages. All patients interviewed were in receipt of in-patient services; either hospices which tended to be separate charitably funded organisations or palliative care units which were part of larger hospitals and funded by the state. Patients were selected by the researcher in conjunction with the clinical team in each centre. In accordance with sampling guidelines for palliative care research, criteria for selection included an advanced cancer diagnosis [metastases to a least one site beyond the primary], awareness of prognosis and no evidence of mental incapacity. Patients were interviewed in their native language by either the researcher or an experienced palliative care nurse with additional training in interview skills. The data were analysed using the Atlas. Ti hermeneutic programme and described more fully through four existential concepts; Lived Body, Lived Time, Lived Space and Lived Other. These offered both generic and specific examples of the experience described by the patients and contributed to the overall understanding of the phenomenon. Results Patients reported four areas which were meaningful in relation to their experience of transition between the palliative and terminal phases of life. These were (a) safety and security (b) challenges to impermanence (c) negotiating time and (d) shifting bonds. We described the overall experience as the phenomenon “ Living transiently within the shadow of death”. The transition between the palliative and terminal aspects of care was a time of uncertainty, mixed messages and confusion. Admission was predominantly for reasons of physical deterioration and symptom burden. The patient’s decision to transfer to a hospice or palliative care unit was more likely to be based on what they considered best for their family, rather than a personal preference. Once admitted, the hospice/palliative care unit took on a supportive role in terms of safety and security. The space of the hospice/palliative care unit was significant in terms of how patients adjusted to their impending death and the clinical staff took on a particular supportive role in this transition. Equally important was the relationships formed with other patients and being present to their death was valuable in developing trust in the ability of the clinical services to care well for them, when their own time came. The inhibitory factors noted focused on the preparatory stages of the transition; from hospital or home. Most patients were not able to clearly identify how they came to be referred to the hospice/palliative care unit, nor who was the clinical person responsible for that decision. Consultation with the patient and family at a time of symptom burden or clinical deterioration meant that the rationale for the transition was not always understood. Rapid and unplanned admissions were considered particularly stressful because of the inability to make necessary domestic and financial arrangements. Conclusions There has been criticism of the influence of biomedicine and technology in a discipline which has its historical roots in the care and comfort of dying people. Patients clearly valued the integration of curative and palliative services in their care, but the results of this study suggest that, as decisions around end-of-life care choices approach, patients do not always understand the significance of the shift in care and this is not clearly explained by clinicians. The concept of transition in healthcare is well documented but its focus has largely been towards positive resolution in terms of transformation or transcendence. We concluded that the experience of the patients interviewed did not clearly meet this description and therefore proposed “transience” as a clearer descriptor of the feelings experienced by patients during the palliative-terminal interface. This said, positive descriptions expressed the care and comfort received. The importance of the care setting emulating a home-like experience was important and would support the literature which suggests that the home is seen as a secure boundary against the fear of death. The emphasis placed on care and comfort clearly describes the principles of early hospice practice and we concluded from this that the developing model of palliative care practice must not lose sight of the important tenets of hospice as an end-of-life care facility, which patients valued.