What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

Abstract

ObjectivesThere has been little research conducted to understand the essential meaning of quality, community-based, end-of-life (EOL) care, despite the expansion of these services. The purpose of this study was to define what matters most for EOL care from the perspective of a diverse range of palliative care providers in the community who have daily encounters with death and dying.MethodsWe used interviews to explore the perceptions of providers and administrators from 14 specialised palliative care teams in Ontario, Canada. Participants were prompted with the question ‘What matters most for EOL care?’ Responses were analysed using a phenomenological approach to derive themes depicting the universal essence of EOL care.ResultsData from 107 respondents were obtained and analysed, from which 40 formulated concepts emerged; these were further grouped into 9 themes. Of the respondents, 39% were nurses, 19% physicians, 27% were supervisors or executives and 15% other. The most predominate concept was that Patient's Wishes are Fulfilled, cited by almost half the respondents. The most prominent themes were Addressing the Non-physical Needs, Healthcare Teams’ Nature of Palliative Care Delivery, Patient Wishes are Honoured, Addressing the Physical Needs, Preparing for and Accepting Death, Communication and Relationship Development, and Involving and Supporting the Family.Conclusions9 critical domains of EOL care evolved from the interviews, indicating that quality EOL care extends beyond managing physical pain, but includes a holistic perspective of care, a healthcare team dedicated to the EOL journey and a patient-centred pathway. Tailoring the provision of care to consider these important elements plays a critical role in supporting a positive EOL experience for patients and families.

The care experiences of patients who die in residential hospice: A qualitative analysis of the last three months of life from the views of bereaved caregivers

“…What the hospices appeared to excel at were the psychosocial elements of care in the delivery of services that were patientand family-centric, compassionate, and respectful, in a physical setting that, in itself, was comforting, peaceful, and fostered privacy. The importance of the manner in which care is delivered, as opposed solely to clinical precision, has been emphasized in examinations of what quality palliative care means to patients and specialized healthcare providers (Hales et al, 2008;Heyland et al, 2006;Mistry et al, 2015). Although some caregivers felt that homecare and hospital care adequately met the patient's physical needs, caregivers tended to be less likely to exalt the humanistic qualities of this care, compared to that in hospice.…”

Depression and Spiritual Distress in Adult Palliative Patients: A Cross-Sectional Study

“…A phenomenological study that enrolled a range of community palliative care providers emphasized the importance of this holistic palliative care approach. This study valued the following as much as the traditionally symptom-oriented concerns: the addressing of the patients' non-physical needs and wishes, the importance of having a healthcare team that functioned as a unit, the delivery of care that was patient-directed (namely seeking to understand the patients' and families' journeys), the importance of ensuring the patient is comfortable, and communication and relationship development in addition to the emotional preparation of the patient for a peaceful death (Mistry et al 2015).…”

Communication of advance care planning decisions: a retrospective cohort study of documents in general practice

“…(1,2) Health practitioners have become more familiar and con dent in their ability, to use these documents, to make decisions during end-of-life care that support patients' preferences. (3) These documents play a particularly important role when a patient has lost decision making capacity and can no longer communicate for themselves. (4,5) Ensuring a patient's preferences are ful lled is the most common priority for health practitioners during end-of-life care.…”

“…(4,8) The state government of Victoria provides an ACP document template, however advance care plans can be constructed on any written form if it ful ls the relevant legal requirements. (3,5,8) Historically, legal representatives have also been involved in the development of substitute decision maker documents. (9) The importance of general practitioners in guiding patients' ACP is well documented and there are many studies examining how the uptake of ACP in general practice can be promoted.…”