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Journal of Clinical Oncology : Official... Feb 2024Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional,... (Review)
Review
Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional, social, existential, and spiritual suffering of patients and their communities. Because adolescents and young adults (AYAs, age 15-39 years) with cancer commonly report distress across all these domains and because that distress translates to their QOL during and after their cancers, PC is particularly relevant for this population. Here, we review the evidence for PC among AYAs with cancer, including its rationale, gaps, opportunities, and implications for care delivery. For example, nearly 90% of AYAs with cancer report distressing symptoms during their treatment, those who survive report ongoing unmet psychosocial and physical health needs, and those who die from their cancers are highly likely to receive medically intense care that is discordant with their goals and values. AYA communication and decision making can be challenging because of ethical and developmental considerations regarding the patient's autonomy and competing priorities of patients and caregivers. PC interventions (including primary PC delivered by oncologists, routine PC subspecialty care, symptom tracking, advance care planning, and psychosocial programs promoting AYA resilience) are all associated with improved patient-centered outcomes. However, PC is inconsistently integrated into AYA oncology care, and access to PC programs is not equitable; marginalized groups continue to experience poorer outcomes. Ongoing and future research and clinical initiatives must continue to bridge these gaps. Improving the QOL of AYAs with cancer is a shared goal of the larger clinical oncology community, and including PC in AYA cancer care delivery can help attain that goal.
Topics: Humans; Adolescent; Young Adult; Adult; Palliative Care; Quality of Life; Neoplasms; Advance Care Planning; Caregivers
PubMed: 37862672
DOI: 10.1200/JCO.23.00709 -
International Journal of Palliative... Nov 2023The economic challenges for researchers in palliative care is an emerging and challenging topic. Knowing where, how and how much is spent is fundamental for palliative...
The economic challenges for researchers in palliative care is an emerging and challenging topic. Knowing where, how and how much is spent is fundamental for palliative care (PC) provision to be increasingly efficient and with lower costs. To accomplish this, there are three important factors to consider: early access to PC; specialised PC using standardised procedures and informal and home-based PC. Beyond costs, ethical aspects should always be present when this care is being provided in its different forms, locations and contexts. For those who want to study the economic challenges in PC, they need to comprehend the complexity of them, since they will always come from a careful articulation between ethics, the person´s needs, the cost of the care and who these costs are charged to.
Topics: Humans; Palliative Care; Hospice and Palliative Care Nursing
PubMed: 38039120
DOI: 10.12968/ijpn.2023.29.11.548 -
BMC Palliative Care Dec 2023The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional... (Review)
Review
BACKGROUND
The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, survival, acceptance and peaceful death.
OBJECTIVE
To map scientific evidence on parents' hope in perinatal and neonatal palliative care contexts.
METHOD
a scoping review theoretically grounded on Dufault and Martocchio's Framework, following the Joanna Briggs Institute methodological recommendations. Searches were performed until May 2023 in the MEDLINE, CINAHL and PsycINFO databases. The searches returned 1341 studies.
RESULTS
Eligible papers included 27 studies, most of which were carried out in the United States under a phenomenological or literature review approach. The centrality of women's perspectives in the context of pregnancy and perinatal palliative care was identified. The parental hope experience is articulated in dealing with the uncertainty of information and diagnosis, an approach to which interaction with health professionals is a determinant and potentially distressful element. Hope was identified as one of the determinants of coping and, consequently, linked to autonomy and parenthood. Cognitive and affiliative dimensions were the hope dimensions that predominated in the results, which corresponded to the parents' ability to formulate realistic goals and meaningful interpersonal relationships, respectively.
CONCLUSION
Hope is a force capable of guiding parents along the path of uncertainties experienced through the diagnosis of a condition that compromises their child's life. Health professionals can manage the family's hope by establishing sensitive therapeutic relationships that focus on the dimension of hope. The need for advanced research and intervention in parental and family hope are some of the points made in this study.
PROTOCOL REGISTRATION
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Topics: Female; Humans; Infant, Newborn; Pregnancy; Interpersonal Relations; Palliative Care; Parents; Quality of Life; Uncertainty
PubMed: 38110974
DOI: 10.1186/s12904-023-01324-z -
JCO Oncology Practice Jun 2024@JCOOP_ASCO editorial on unique needs of end-of-life care for different blood cancers discusses: #pallheme improves QOL but less utilized in cancers. Contextualize...
@JCOOP_ASCO editorial on unique needs of end-of-life care for different blood cancers discusses: #pallheme improves QOL but less utilized in cancers. Contextualize Weisse et al study. More #pallheme research needed for lymphoma and myeloma in era of cell therapy.
Topics: Humans; Hematologic Neoplasms; Terminal Care; Palliative Care; Quality of Life
PubMed: 38478797
DOI: 10.1200/OP.24.00081 -
BMJ Supportive & Palliative Care Sep 2023Social and therapeutic horticulture (STH) is little known in palliative care. This evaluation sets out to explore the effectiveness of STH in relieving distress,...
OBJECTIVES
Social and therapeutic horticulture (STH) is little known in palliative care. This evaluation sets out to explore the effectiveness of STH in relieving distress, managing symptoms and supporting people with advanced and terminal illness to live well throughout each stage of the disease trajectory.
METHODS
STH was provided for 218 patients in an indoor hospice setting during a 2-year period (April 2018 to March 2020). Nature-based interventions, such as potting up plants, floristry and creating miniature gardens, were adapted for all participants to create a nature connection experience while indoors. The Distress Thermometer (DT) was used to measure perceived distress before and after each session, and patients' reports of their subjective experience were recorded verbatim.
RESULTS
Results showed a statistically significant reduction in DT scores of between 54% and 60%. Patients also self-reported an improvement in quality of life and well-being and in management of symptoms including a reduction in pain.
CONCLUSIONS
This evaluation shows that STH is effective in relieving distress in palliative care and may be considered a valued therapeutic intervention. The findings can inform planning within hospices and palliative care settings to enhance the care of patients and their family members.
Topics: Humans; Palliative Care; Quality of Life; Horticultural Therapy; Hospice Care; Hospice and Palliative Care Nursing; Hospices
PubMed: 36854616
DOI: 10.1136/spcare-2021-003503 -
Swiss Medical Weekly Feb 2024Palliative sedation is defined as the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) to relieve the burden of... (Review)
Review
Palliative sedation is defined as the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) to relieve the burden of otherwise intractable suffering in a manner ethically acceptable to the patient, their family, and healthcare providers. In Switzerland, the prevalence of continuous deep sedation until death increased from 4.7% in 2001 to 17.5% of all deceased in 2013, depending on the research method used and on regional variations. Yet, these numbers may be overestimated due to a lack of understanding of the term "continuous deep sedation" by for example respondents of the questionnaire-based study. Inadequately trained and inexperienced healthcare professionals may incorrectly or inappropriately perform palliative sedation due to uncertainties regarding its definitions and practice. Therefore, the expert members of the Bigorio group and the authors of this manuscript believe that national recommendations should be published and made available to healthcare professionals to provide practical, terminological, and ethical guidance. The Bigorio group is the working group of the Swiss Palliative Care Society whose task is to publish clinical recommendations at a national level in Switzerland. These recommendations aim to provide guidance on the most critical questions and issues related to palliative sedation. The Swiss Society of Palliative Care (palliative.ch) mandated a writing board comprising four clinical experts (three physicians and one ethicist) and two national academic experts to revise the 2005 Bigorio guidelines. A first draft was created based on a narrative literature review, which was internally reviewed by five academic institutions (Lausanne, Geneva, Bern, Zürich, and Basel) and the heads of all working groups of the Swiss Society of Palliative Care before finalising the guidelines. The following themes are discussed regarding palliative sedation: (a) definitions and clinical aspects, (b) the decision-making process, (c) communication with patients and families, (d) patient monitoring, (e) pharmacological approaches, and (f) ethical and controversial issues. Palliative sedation must be practised with clinical and ethical accuracy and competence to avoid harm and ethically questionable use. Specialist palliative care teams should be consulted before initiating palliative sedation to avoid overlooking other potential treatment options for the patient's symptoms and suffering.
Topics: Humans; Palliative Care; Uncertainty; Health Personnel; Communication; Physicians; Deep Sedation; Terminal Care; Hypnotics and Sedatives
PubMed: 38579308
DOI: 10.57187/s.3590 -
Cancer Biotherapy & Radiopharmaceuticals Sep 2023The scourge of cancer mortally wounds the soul. From the time of diagnosis, the spiritual shock should be recognized, acknowledged, and addressed in concert with the...
The scourge of cancer mortally wounds the soul. From the time of diagnosis, the spiritual shock should be recognized, acknowledged, and addressed in concert with the personalized management strategy for the tumor. Optimal cancer care treats both body and soul. Psycho-oncology theory defines existential issues and spirituality in conceptually ambiguous terms but, in reality, such afflictions of the spirit cause great suffering in cancer patients. Patients often seek reassurance that their life has purpose and meaning, and the provision of emotional and soulful support from their oncologist is of inestimable importance to spiritual well-being. In addition to the time and resource constraints of daily clinical practice, recent challenges to the personal doctor-patient relationship include e-medicine and virtual clinical encounters, and the potential disruption to be wrought by new generation artificial intelligence. These obstacles are addressed with a view to the physician being able to continue to provide empathic compassionate care. The art of Kintsugi is invoked to offer a metaphor for restoration of the soul afflicted by cancer.
Topics: Humans; Palliative Care; Physician-Patient Relations; Artificial Intelligence; Neoplasms; Spirituality
PubMed: 36961444
DOI: 10.1089/cbr.2023.0009 -
Current Problems in Pediatric and... Jan 2024In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses....
In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative care in Sweden aligns with the international standard of pediatric palliative care as a care directed towards all children with life-threatening or life-limiting illness or conditions from the time of diagnosis. Examples of such initiatives and of different care-services providing pediatric palliative care will be presented. Finally a case to highlighting how a child's care needs might change throughout the illness trajectory and how various healthcare facilities and organizations when collaborating can support the child's participation in decision making is presented.
Topics: Child; Humans; Palliative Care; Sweden
PubMed: 37993301
DOI: 10.1016/j.cppeds.2023.101455 -
Current Opinion in Anaesthesiology Apr 2024Increased public awareness of ethical issues in pain and palliative care, along with patient advocacy groups, put pressure on healthcare systems and professionals to... (Review)
Review
PURPOSE OF REVIEW
Increased public awareness of ethical issues in pain and palliative care, along with patient advocacy groups, put pressure on healthcare systems and professionals to address these concerns.Our aim is to review the ethics dilemmas concerning palliative care in ICU, artificial intelligence applications in pain therapy and palliative care, and the opioids epidemics.
RECENT FINDINGS
In this focus review, we highlighted state of the art papers that were published in the last 18 months, on ethical issues in palliative care within the ICU, artificial intelligence trajectories, and how opioids epidemics has impacted pain management practices (see Visual Abstract).
SUMMARY
Palliative care in the ICU should involve a multidisciplinary team, to mitigate patients suffering and futility. Providing spiritual support in the ICU is an important aspect of holistic patient care too.Increasingly sophisticated tools for diagnosing and treating pain, as those involving artificial intelligence, might favour disparities in access, cause informed consent problems, and surely, they need prudence and reproducibility.Pain clinicians worldwide continue to face the ethical dilemma of prescribing opioids for patients with chronic noncancer pain. Balancing the need for effective pain relief with the risk of opioid misuse, addiction, and overdose is a very controversial task.
Topics: Humans; Analgesics, Opioid; Artificial Intelligence; Reproducibility of Results; Chronic Pain; Palliative Care
PubMed: 38288778
DOI: 10.1097/ACO.0000000000001345 -
Current Oncology (Toronto, Ont.) Nov 2023Cancer pain intensity (PI) fluctuates, but the relationship between pain flares and background pain with respect to pain management is not settled. We studied how flare...
Cancer pain intensity (PI) fluctuates, but the relationship between pain flares and background pain with respect to pain management is not settled. We studied how flare and background PIs corresponded with treatment results for background cancer pain. Patients admitted to an acute palliative care unit with average and/or worst PI ≥ 1 on the 11-point numeric rating scale were included. Average and worst PI at admission and average PI at discharge were collected. We examined how the difference and ratio between worst and average PI and average PI at admission, were associated with average PI development during hospitalization. Positive differences between worst and average PI at admission were defined as pain flares. Ninety out of 131 patients had pain flares. The reduction in average PI for patients with flares was 0.9 and for those without, 1.9 ( = 0.02). Patients with large worst minus average PI differences reported the least improvement, as did those with large worst/average PI ratios. Patients with pain flares and average PI ≤ 4 at admission had unchanged average PI during hospitalization, while those with pain flares and average PI > 4 experienced pain reduction (2.1, < 0.001). Large pain flares, in absolute values and compared to background PI, were associated with inferior pain relief.
Topics: Humans; Palliative Care; Cancer Pain; Pain; Neoplasms; Pain Management
PubMed: 38132380
DOI: 10.3390/curroncol30120746