scholarly journals Opinion and Special Article: Next Steps in Palliative Care Education for Neurology Residents

Neurology ◽  
2021 ◽  
pp. 10.1212/WNL.0000000000012911
Author(s):  
Tara Cook ◽  
Robert Arnold ◽  
Kwonho Jeong ◽  
Julie Childers
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
End Of Life Decisions ◽  
Neurologic Diseases ◽  
Residency Programs ◽  
Palliative Care Education ◽  
Care Training

Many neurologic diseases are life limiting and markedly impair patients' quality of life. Growing recommendations in the field recommend that neurologists have primary skills in palliative medicine that will allow them to manage symptoms and discuss end of life decisions with patients and families. Previous work has shown that formal palliative care training in neurology residencies is very limited. In this paper we briefly describe a national survey of neurology residents where we assess both the quantity and quality of the teaching they receive in end-of-life care as compared to a common and an uncommon neurologic condition. Based on the gaps we identified, as well as previous studies and recommendations in neuropalliative care, we provide nine recommendations to help neurology residency programs improve their teaching of primary neuropalliative care skills.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

Cultural Issues in Palliative Care

2018 ◽  
Author(s):  
Sriram Yennurajalingam
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cultural Differences ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Cultural Issues ◽  
Medical Interpreter ◽  
Improve Patient

Culture play a significant role in the care of patients receiving Palliative care. Understanding and managing cultural differences in end-of-life care is important as misunderstanding can result in under-treatment and unnecessary suffering for the patient and their care providers. Therefore better understanding can improve patient–physician communication and potentially improve patients’ quality of life, coping, and facilitate patients to make informed decisions and set appropriate priorities with regard to treatment and end-of-life care. This chapter discusses key cultural issues in palliative care, including the concepts of nondisclosure, the importance of the use of a medical interpreter, and the importance of an interdisciplinary team.

scholarly journals ‘. . . and then no more kisses!’ Exploring patients’ experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study

2019 ◽  
Vol 34 (2) ◽  
pp. 219-230 ◽  
Author(s):  
Maria Heckel ◽  
Alexander Sturm ◽  
Stephanie Stiel ◽  
Christoph Ostgathe ◽  
Franziska A Herbst ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
End Of Life ◽  
End Of Life Care ◽  
Multidrug Resistant ◽  
Life Care ◽  
Hygiene Measures ◽  
Patients Wishes

Background: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. Objectives: To integrate patients’ perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms’ diagnosis, protection and isolation measures on their well-being and patients’ wishes and needs regarding their care. Design: A mixed-methods convergent parallel design embedded quantitative data on the patients’ multidrug-resistant bacterial microorganisms’ trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. Setting/participants: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. Results: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms’ diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients’ quality of life. Patients’ wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. Conclusion: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms’ diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms’ policies of hospitals.

Early palliative care is associated with improved quality of end-of-life care for women with high risk gynecologic malignancies

2017 ◽  
Vol 145 ◽  
pp. 26
Author(s):  
N.S. Nevadunsky ◽  
C. Zanartu ◽  
P. Pinto ◽  
R. Barrera ◽  
A.R. Van Arsdale ◽  
...  
Keyword(s):  
Palliative Care ◽  
High Risk ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Gynecologic Malignancies ◽  
Early Palliative Care

scholarly journals Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients

Cancer ◽  
2014 ◽  
Vol 120 (11) ◽  
pp. 1743-1749 ◽  
Author(s):  
David Hui ◽  
Sun Hyun Kim ◽  
Joyce Roquemore ◽  
Rony Dev ◽  
Gary Chisholm ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
Life Care

23 Findings from a pilot and feasibility trial of a music therapy intervention in specialist palliative care

2018 ◽  
Vol 8 (3) ◽  
pp. 368.2-368
Author(s):  
Lisa Graham-Wisener ◽  
Joanne Reid ◽  
Tracy McConnell ◽  
Kerry McGrillen ◽  
Jenny Kirkwood ◽  
...  
Keyword(s):  
Palliative Care ◽  
Music Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Phase Iii ◽  
Feasibility Trial ◽  
Life Care ◽  
Attrition Rates ◽  
Therapy Intervention

IntroductionMusic therapy aligns to the holistic approach to palliative and end-of-life care (PEOLC) with increased prevalence in PEOLC settings (Graham-Wisener et al. 2018). Despite this there is a dearth of high-quality evidence examining the impact of music therapy towards end of life on quality of life (McConnell et al. 2016).AimsThe aim of this pilot and feasibility study was to: test procedures; outcomes and validated tools; estimate recruitment and attrition rates; and calculate the sample size required for a phase III randomised controlled trial.MethodsA single-centre pilot and feasibility trial with patients admitted to a specialist palliative care inpatient unit within the United Kingdom. Participants were randomised (1:1) to either a music therapy intervention of two 30–45 min sessions of music therapy per week for three consecutive weeks or usual care. The primary outcome measure was to evaualte the feasibility of administering the McGill Quality of Life Questionnaire (MQoL) baseline with follow-up measures at one, three and five weeks.Results51 participants were recruited to the trial over a 12 month period. Feasibility of administering music therapy intervention and attrition rates identified one-week follow-up as an appropriate primary outcome. Results suggest a likely effect on MQoL total score between intervention and control arms in particular the existential subscale.ConclusionThe current study resolved a number of issues towards informing robust procedures for a phase III RCT. This data is urgently needed to ensure an evidence-based decision on inclusion of music therapy in palliative care services.References. Graham-Wisener L, Watts G, Kirkwood J, Harrison C, McEwan J, Porter S, Reid J, McConnell TH. Music therapy in UK palliative and end-of-life care: A service evaluation. BMJ supportive & palliative care2018.. McConnell T, Scott D, Porter S. Music therapy for end-of-life care: An updated systematic review. Palliative Medicine2016;30(9):877–883.

scholarly journals Do Palliative Care Teams in Nursing Homes Improve the Quality of End-of-Life Care for Nursing Home Residents?

2019 ◽  
Author(s):  
Helena Temkin-Greener Helena Temkin-Greener ◽  
Dana Mukamel ◽  
Susan Ladwig ◽  
Thomas , Caprio ◽  
Sally Norton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Life Care ◽  
Palliative Care Teams

scholarly journals Decision making in the end-of-life care of patients who are terminally ill with cancer – a qualitative descriptive study with a phenomenological approach from the experience of healthcare workers.

2021 ◽  
Author(s):  
Angela Luna-Meza ◽  
Natalia Godoy-Casasbuenas ◽  
José Andrés Calvache ◽  
Eduardo Diaz ◽  
Fritz Gempeler ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
End Of Life Decisions ◽  
Care Plans ◽  
Qualitative Descriptive ◽  
Imminent Death

Abstract Background: In Colombia, recent legislation regarding end-of-life decisions includes palliative sedation, advance directives and euthanasia. We analysed which aspects influence health professionals´ decisions regarding end-of-life medical decisions and care for cancer patients.Methods: Qualitative descriptive–exploratory study based on phenomenology using semi-structured interviews. We interviewed 28 oncologists, palliative care specialists, general practitioners and nurses from three major Colombian institutions, all involved in end-of-life care of cancer patients: Hospital Universitario San Ignacio and Instituto Nacional de Cancerología in Bogotá and Hospital Universitario San José in Popayan. Results: When making decisions regarding end-of-life care, professionals consider: 1. Patient’s clinical condition, cultural and social context, in particular treating indigenous patients requires special skills. 2. Professional conditions: training in palliative care and experience in discussing end-of-life options and fear of legal consequences. Physicians indicate that many patients deny their imminent death which hampers shared decision-making and conversations. They mention frequent unclarity regarding who initiates conversations regarding end-of-life decisions with patients and who finally takes decisions. Patients rarely initiate such conversations and the professionals normally do not patients directly for their preferences. Fear of confrontation with family members and lawsuits leads doctors to carrying out interventions such as initiating artificial feeding techniques and cardiopulmonary resuscitation, even in absence of expected benefits. The opinions regarding the acceptability of palliative sedation, euthanasia and use of medications to accelerate death without the patients´ explicit request vary greatly. 3. Conditions of the insurance system: limitations exist in the offer of oncology and palliative care services for important proportions of the Colombian population. Colombians have access to opioid medications, barriers to their application are largely in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare.Conclusions: to improve end-of-life decision making, Colombian physicians and patients need to openly discuss wishes, needs and care options and prepare caregivers. Promotion of palliative care education and development of palliative care centres and home care plans is necessary to facilitate access to end-of-life care. Patients and caregivers’ perspectives are needed to complement physicians’ perceptions and practices. Key Message: The results highlight the importance of improving access to end-of-life care in Colombia, and diminish the “denial of imminent death” among patients and caregivers to facilitate end-of-life discussions and shared decisions; interventions to prepare caregivers and promote home care.

Does post-registration palliative care education for nurses improve practice? A systematic review

2019 ◽  
Vol 25 (11) ◽  
pp. 552-564 ◽  
Author(s):  
Angela Thavaraj ◽  
Karen Gillett
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Outcome Measures ◽  
End Of Life Care ◽  
Quantitative Data ◽  
Life Care ◽  
Care Education ◽  
Palliative Care Education ◽  
The Impact

Aims: We aimed to answer the question: what is the evidence that post-registration palliative care education for nurses improves practice? Background: The 2008 End of Life Care Strategy emphasised the need for a workforce equipped to provide high-quality end-of-life care for patients and their families. As registered nurses are the healthcare professionals spending most time with patients and families at the end of life, associated policy documents stress the importance of educating nurses to equip them with the necessary knowledge and skills to provide effective care. Despite education being a consistent recommendation, the ability of education to influence nursing practice is uncertain. Methods: We undertook a systematic review of literature using Joanna Briggs Institute Methodology for Mixed Methods by searching the Medline, Embase and CINAHL databases between January 2006 and December 2018. Findings: Ten studies met the inclusion criteria, seven contained quantitative data. Six demonstrated improvements in outcome measures, but not all results were statistically significant. Most quantitative data related to self-reported measures of confidence. Six studies contained qualitative findings that were categorised into themes: confidence, practice change, skills and proactivity. Conclusion: Little research exists exploring the impact of post-registration palliative care education for nurses. Existing outcome measures do not clearly demonstrate changes to end-of-life practice. Research is suggested to establish links between self-reported confidence and improvements to practice. Evaluation of the impact on practice should be an integral component of end-of-life education initiatives.

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