-
Australian Journal of General Practice Nov 2018Palliative care aims to improve quality of life for patients with life-limiting illnesses. It is often linked to the care of people with cancer; however, patients with...
BACKGROUND
Palliative care aims to improve quality of life for patients with life-limiting illnesses. It is often linked to the care of people with cancer; however, patients with non-cancer end-stage conditions also have significant needs.
OBJECTIVES
The aims of this paper are to discuss common trajectories of deterioration in non-malignant conditions, consider possible barriers to palliative care referral, review the principles of the palliative care approach and illustrate specific factors relevant for common non-cancer conditions.
DISCUSSION
The symptom burden and care needs for patients with end-stage, nonmalignant illnesses are similar to those of patients with advanced cancer. These patients benefit from a palliative approach, comprising management of the underlying condition and attention to symptoms, psychosocial needs and carer support. Advance care planning provides an opportunity to prepare for future illness episodes, including provision of end-of-life care. General practitioners are well placed to provide palliative care for patients with advanced non-cancer illnesses.
Topics: Advance Care Planning; Heart Failure; Humans; Kidney Failure, Chronic; Nervous System Diseases; Palliative Care; Pulmonary Disease, Chronic Obstructive; Referral and Consultation
PubMed: 31207673
DOI: 10.31128/AJGP-07-18-4625 -
Journal of Medical Radiation Sciences Dec 2016Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of... (Meta-Analysis)
Meta-Analysis Review
Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well-informed decisions about treatment options. This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and (3) patients' and caregivers' perspective on disclosure and their preferences for communication styles. Relevant studies were identified by searching electronic databases including Pubmed, EMBASE and ScienceDirect using multiple combinations of keywords, which yielded a total of 65 articles meeting the inclusion criteria. The discrepancy between patients' and doctors' expectations was associated with many factors including doctors' reluctance to disclose terminal prognoses and patients' ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients' experience and treatment choices. Patients' views on disclosure are influenced by many cultural, psychological and illness-related factors, therefore individuals' needs must be considered when conveying prognostic information. More research is needed to identify communication barriers and the interventions that could be used to increase patients' satisfaction with palliative care.
Topics: Humans; Neoplasms; Palliative Care; Physician-Patient Relations; Truth Disclosure
PubMed: 27741380
DOI: 10.1002/jmrs.188 -
Annals of Palliative Medicine Feb 2019Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term... (Meta-Analysis)
Meta-Analysis
Palliative care offers patients with a serious illness and their families access to services that can improve quality of life, mood, and symptoms. However, the term palliative care is often confused with end of life or hospice services limiting its application to persons with chronic illnesses who might benefit. Non-hospice palliative care is a term that is emerging to more accurately reflect the broader care model that palliative care represents. The aim of this review was to identify the characteristics of published nonhospice palliative care interventions. We derived our sample predominantly from a recently published systematic review and meta-analysis and selected studies published since the review. Inclusion criteria were: self-described palliative care intervention studies using randomized designs for participants with lifelimiting illnesses aged 18 years or older. These 38 studies fell into 3 broad categories: primary, specialty, and hybrid models. Common challenges among these models include limited education of generalists, limited reimbursement, and limited access in certain areas. However, increasing palliative care usage has also been associated with increased hospice use and appropriate timing of referrals.
Topics: Adolescent; Adult; Aged; Ambulatory Care; Facilities and Services Utilization; Home Care Services; Hospice Care; Hospitalization; Humans; Middle Aged; Models, Organizational; Palliative Care; Patient Care Team; Randomized Controlled Trials as Topic; Young Adult
PubMed: 29860852
DOI: 10.21037/apm.2018.03.11 -
International Journal of Nursing Studies Jul 2020End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of... (Review)
Review
BACKGROUND
End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia.
DESIGN
Evidence synthesis including systematic reviews and primary studies. PROSPERO registration: CRD42018107718.
DATA SOURCES
PubMed, CINAHL Plus, SCOPUS, Social Care Online and Cochrane Library were searched (July 2018). No year limit applied. To be included, reviews had to evaluate effectiveness of ACP for people with dementia or report on views and experiences of ACP from the perspective of people with dementia, carers, or health and care professionals. Additional searches (September 2018) were conducted to identify recent primary studies not included in the reviews.
REVIEW METHODS
Data extraction was undertaken by one reviewer and checked by a second. Methodological quality was assessed using AMSTAR-2 and Joanna Briggs Institute instruments by two authors independently. Outcomes were categorized and tabulated to assess effectiveness. Qualitative data was analysed using thematic synthesis.
RESULTS
Nineteen reviews (163 unique studies) and 11 primary articles with a range of advance care planning definitions and of variable quality were included. Advance care planning was associated with decreased hospitalizations, increased concordance between care received and prior wishes and increased completion of advance care planning documents but quality of primary research was variable. Views of ACP for people with dementia can be clustered around six themes; 1) timing and tailoring, 2) willingness to engage, 3) roles and responsibilities of healthcare professionals, 4) relationships, 5) training and 6) resources needed. Diminishing decision-making capacity over time is a key overarching feature.
CONCLUSIONS
Advance care planning is acceptable for people with dementia and their carers and is associated with improved outcomes. Guidelines on which outcomes and which definition to use are necessary, as is research to test different approaches to ACP. Education on topics related to diminishing decision-making capacity is key to optimize advance care planning for people with dementia and their carers.
Topics: Advance Care Planning; Dementia; Humans; Palliative Care
PubMed: 32380259
DOI: 10.1016/j.ijnurstu.2020.103576 -
BMC Palliative Care Aug 2019Recognising and knowing how to manage ethical issues and moral dilemmas can be considered an ethical skill. In this study, ethics of care is used as a theoretical...
BACKGROUND
Recognising and knowing how to manage ethical issues and moral dilemmas can be considered an ethical skill. In this study, ethics of care is used as a theoretical framework and as a regulatory criterion in the relationship among healthcare professionals, patients with palliative care needs and family members. This study is a part of a larger project aimed at developing and implementing a training programme on "ethical communication" addressed to professionals caring for patients with palliative care needs. The aim of this study was comprehending whether and how the ethics of care informs the way healthcare professionals make sense of and handle ethical issues in palliative care.
METHODS
Qualitative study employing a theoretically driven thematic analysis performed on semi-structured interviews. The research was conducted in a clinical cancer centre in northern Italy. Eligible participants were physicians and nurses from eleven hospital wards who assisted patients with chronic advanced disease daily and had previously attended a 4-h training on palliative care held by the hospital Palliative Care Unit.
RESULTS
The researchers identified five themes: morality is providing global care; morality is knowing how to have a relationship with patients; morality is recognizing moral principles; moral dimension and communication; and moral dilemmas are individual conflicts.
CONCLUSIONS
Ethics of care seems to emerge as a theoretical framework that includes the belief systems of healthcare professionals, especially those assisting patients with palliative care needs; moreover, it allows the values of both the patients and professionals to come to light through the relationship of care. Ethics of care is also appropriate as a framework for ethical training.
Topics: Adult; Aged; Ethics, Medical; Family; Female; Humans; Interviews as Topic; Italy; Male; Middle Aged; Moral Obligations; Palliative Care; Physicians; Qualitative Research
PubMed: 31399094
DOI: 10.1186/s12904-019-0453-2 -
BMC Palliative Care Jul 2018Norway has one of the lowest home death rates in Europe. However, it is the health authorities´ ambition to increase this by facilitating palliative care at home. The...
BACKGROUND
Norway has one of the lowest home death rates in Europe. However, it is the health authorities´ ambition to increase this by facilitating palliative care at home. The aim of this study was to achieve more insight, through home care nurses and general practitioners, of conditions that facilitate or hamper more time at home and more home deaths for patients with terminal disease and short life expectancy.
METHODS
We used a qualitative research design with four focus groups with a total of 19 participants, of either home care nurses or general practitioners, using semi-structured question guides. The data were processed by systematic text condensation and encompassed thematic analysis of meaning and content of data across cases, which included four steps of analysis.
RESULTS
Three main themes were identified: 1) The importance of a good start for the patient and family with five sub-themes, 2) 'Passing the baton' - the importance of collaboration across the health system with four sub-themes, and 3) Avoiding new hospitalization by establishing collaboration and competence within primary health care with four sub-themes.
CONCLUSIONS
This study demonstrates that optimum palliative care at home depends on close collaboration and dialogue between the patient, family, home care nurses and general practitioner. It suggests the need for safer discharge routines and planning when hospitals transfer patients with terminal disease to their homes. A good start for the patient and family, where the initial interdisciplinary collaboration meeting takes place in the patient's home, is crucial for a good result. The general practitioners' perception of their 'disconnection' during hospitalization and prior to discharge has the potential to reduce patient safety. The family seems to be fundamental in gaining more time at home for the patient and supporting the patient to eventually die at home. Home-based palliative care demands experience and competence as well as regular supportive mentoring.
Topics: Adult; Aged; Female; Focus Groups; General Practitioners; Home Care Services; Humans; Male; Middle Aged; Norway; Nurses; Palliative Care; Qualitative Research
PubMed: 30021583
DOI: 10.1186/s12904-018-0350-0 -
BMC Palliative Care Apr 2020Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with... (Meta-Analysis)
Meta-Analysis
Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families.
BACKGROUND
Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers -knowledge and communication barriers- to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families.
METHODS
A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis.
RESULTS
Four themes were identified: awareness of palliative care, collaboration and communication in palliative care-related settings, attitudes and beliefs towards palliative care, and emotions involved in disease pathways. The results showed that cognitive barriers and facilitators are involved in the educational, social, emotional, and cultural dimensions of palliative care provision and utilization. In particular, these barriers and facilitators exist both at the healthcare professional level (e.g. a barrier is lack of understanding of palliative care applicability, and a facilitator is strategic visibility of the palliative care team in patient floors and hospital-wide events) and at the patient and families level (e.g. a barrier is having misconceptions about palliative care, and a facilitator is patients' openness to their own needs).
CONCLUSIONS
To optimize palliative care services utilization, awareness of palliative care, and healthcare professionals' communication and emotion management skills should be enhanced. Additionally, a cultural shift, concerning attitudes and beliefs towards palliative care, should be encouraged.
Topics: Family; Health Personnel; Humans; Neoplasms; Palliative Care; Patient Acceptance of Health Care; Patients; Qualitative Research
PubMed: 32284064
DOI: 10.1186/s12904-020-00556-7 -
Brazilian Journal of Anesthesiology... 2019Palliative sedation is a medical procedure that has been used for more than 25 years to relieve refractory symptoms not responsive to any previous treatment in patients... (Review)
Review
BACKGROUND AND OBJECTIVE
Palliative sedation is a medical procedure that has been used for more than 25 years to relieve refractory symptoms not responsive to any previous treatment in patients with no possibility of cure and near the end of life. Many uncertainties persist on the theme regarding definition, indications, decision making, most appropriate place to perform the procedure, most used drugs, need for monitoring, fluids and nutritional support, and possible ethical dilemmas. The objective of this review was to seek a probable consensus among the authors regarding these topics not yet fully defined.
METHOD
An exploratory search was made in secondary sources, from 1990 to 2016, regarding palliative sedation and its clinical and bioethical implications.
CONCLUSIONS
Palliative sedation is an alternative to alleviate end-of-life patient suffering due to refractory symptoms, particularly dyspnea and delirium, after all other treatment options have been exhausted. Decision making involves prior explanations, discussions and agreement of the team, patient, and/or family members. It can be performed in general hospital units, hospices and even at home. Midazolam is the most indicated drug, and neuroleptics may also be required in the presence of delirium. These patients’ monitoring is limited to comfort observation, relief of symptoms, and presence of adverse effects. There is no consensus on whether or not to suspend fluid and nutritional support, and the decision must be made with family members. From the bioethical standpoint, the great majority of authors are based on intention and proportionality to distinguish between palliative sedation, euthanasia, or assisted suicide.
Topics: Clinical Decision-Making; Deep Sedation; Humans; Palliative Care; Terminal Care
PubMed: 29776669
DOI: 10.1016/j.bjan.2018.03.002 -
Nutrients May 2021Nutritional management of patients under palliative care can lead to ethical issues, especially when Enteral Nutrition (EN) is prescribed by nasogastric tube (NGT). The...
Nutritional management of patients under palliative care can lead to ethical issues, especially when Enteral Nutrition (EN) is prescribed by nasogastric tube (NGT). The aim of this review is to know the current status in the management of EN by NG tube in patients under palliative care, and its effect in their wellbeing and quality of life. The following databases were used: PubMed, Web of Science (WOS), Scopus, Scielo, Embase and Medline. After inclusion and exclusion criteria were applied, as well as different qualities screening, a total of three entries were used, published between 2015 and 2020. In total, 403 articles were identified initially, from which three were selected for this review. The use of NGT caused fewer diarrhea episodes and more restrictions than the group that did not use NG tubes. Furthermore, the use of tubes increased attendances to the emergency department, although there was no contrast between NGT and PEG devices. No statistical difference was found between use of tubes (NGT and PEG) or no use, with respect to the treatment of symptoms, level of comfort, and satisfaction at the end of life. Nevertheless, it improved hospital survival compared with other procedures, and differences were found in hospital stays in relation to the use of other probes or devices. Finally, there are not enough quality studies to provide evidence on improving the health status and quality of life of the use of EN through NGT in patients receiving palliative care. For this reason, decision making in this field must be carried out individually, weighing the benefits and damages that they can cause in the quality of life of the patients.
Topics: Adult; Enteral Nutrition; Female; Humans; Intubation, Gastrointestinal; Length of Stay; Male; Palliative Care; Quality of Life; Treatment Outcome
PubMed: 34066386
DOI: 10.3390/nu13051562 -
Critical Care (London, England) Jun 2021
Topics: Humans; Palliative Care; Terminology as Topic
PubMed: 34112229
DOI: 10.1186/s13054-021-03633-2