Science topic

Palliative Care - Science topic

Palliative Care are care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed)
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El trabajo de investigaciòn es un estudio sistematizado de un problema que evidencia el dominio del àrea de su especialidad, y se conciben como ir màs allà del conocimiento, profundizar, indagar, corroborar informaciòn que nos permita seguir desarrollando mejores formas de hacer en enfermerìa; evidenciar , hallar respuestas, orientarse hacia la innovación en las diversas especialidades. Los cuidados paliativos es una especialidad que implica la asistencia de los pacientes y familias en el proceso de final de vida, asumiendo que la persona es un ser multidimensional y que los cuidados enfermeros se orientan hacia la calidad de vida, a la adaptaciòn a la nueva situaciòn de enfermedad avanzada y progresiva, a la necesidad de identificar los niveles de complejidad del cuadro clìnico, a la posiciòn del profesional de enfermerìa que interactùa de forma permanente con otros profesionales del equipo de salud y al aporte que el enfermero brinda a la mejora y desarrollo de buenas pràcticas.
Los cuidados paliativos en lationoamerica es una especialidad relativamente nueva, y con mucho què aprender y mucho por hacer; cuales son las razones por las cuales enfermerìa paliativa no investiga?, cuales son los factores que predisponen a esta carencia de trabajos de investigaciòn en enfermerìa? a què se le atribuye la falta de publicaciòn cientìfica en enfermerìa paliativa?
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Creo que en general a las Enfermeras, están mostrando mayor interés por la Investigación, pero por falta de especialización en el área oncológica no se hace. Por otro lado quienes están en la atención directa, los tiempos para investigación no se consideran en sus tiempos laborales por ser la enfermera un recurso de alto costo para las instituciones.
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I'm performing an RCT with cancer patients, with two distinct groups: both groups have cancer patients. I have planned to carry out the intention-to-treat if a patient does not continue in the study. One of the patients left the study for palliative care, and died due to the disease. Should I carry out the intention-to-treat with this specific patient?
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Thanks Professor!
Luis.
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Dear colleagues,
I'm doing a costing study of palliative care packages in low and middle income countries, and as a first step, we need to estimate the need for palliative care services by country.
Hemorrhagic Fever, such as Ebola, is included in the list of diseases/conditions that generate major needs for palliative care. Others include malignant neoplasm, heart failure, renal failure, COPD, dementia, HIV and etc.  While death numbers for other diseases/conditions are available either through WHO or IHME, I can't find the death number for hemorrhagic fever by country (we are looking at Vietnam and India as two example countries). A lit search was not helpful as well. 
Would anyone know where to find those data?
Thanks! Xiaoxiao
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https://wap.business-standard.com/amp/international,3 days ago,Iraqi health Ministry has said up to 96 cases of VHF has been reported including 18 deaths.
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Dear Colleagues, please fill thiscquestionnaire, it takes only 5 minutes. It os anonymous. For health professionels e.g. nurses and medical doctors. All specialties. Thank you. In advanced for ypur collaboration. Deatails in the first page. Of the link.
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Articles which discuss holistic approaches to Palliative Care.
A psycho-social approach to Palliative Care. - Quality of life - meaningful activity
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la terapia ocupacional es una buena alternativa en los pacientes de cuidados `paliativos
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Dear Research Community,
Hospice and palliative care is facing special issues currently.
Non COVID-19 patients cannot get the direct contact and care from close ones and the care teams. At home they are more isolated, and also in hospices visits are reduced to the absolute minimum.
COVID-19 patients often do not have contact to family members before being sedated for intubation. In many cases there is no way to have a last contact to the beloved ones.
Which smart-technology solutions are there currently applied?
Which solutions are applied, that are also fullfilling standardds of data protectin?
I am really eager to learn more and share experiences and ideas!
Kind regards
Martin
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Es muy importante conocer lo que ud refiere del uso de la tecnologia en este caso de aplicaciones que pueden resolver situaciones extremas y en condiciones antes del duelo.En los casos de paises que poseen atencion primaria de Salud ligada a estos pacientes y en estos moemntos de pandemia es necesario tambien establecer una estrtegia de trabajo que concatene el medico y la enfermera de la atencion primaria con estos pacientes. Estamos hablando fuera de la UCI y de los hospitales .
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Dear Sirs and Madams, Doctors and Nurses
please fill this anonymous questionnaire about Dementia and palliative care. You needonly 5 minutes. Thank you to help this research study.
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Hi, I'm a student and this is my first time doing research. My research topic is the burnout of palliative care nurse. But due to lockdown, I can only find and try to contact them online and I've got no idea about it. I need at least 200 participants while I know few people attending terminal care as a nurse. Where can I find more palliative care nurses as many as possible? And, in what kinds of organisation there are more palliative care nurses working? Is it suitable if I contact the organisation itself via email or Facebook and ask for helping me distribute the questionnaire to their workers? Any advice? Thanks a million!
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I would contact the organization with these questions. You will also want to make the questionnaire as short as possible, and stress the shortness to participants. You may have to offer a chance at remuneration or a prize. There may also be support groups for hospice workers you could contact.
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Is palliative surgery of total colectomy and removal of rectal mass (not curative) associated with an increase in progression-free survival of patients with metastatic colorectal cancer? has anyone seen a paper or textbook in this regard?
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Perhaps it is necessary to consider each situation individually, and everything will depend on the tumor process, the patient's status, the goal that the operation will pursue… Ultimately, the goal of treatment is to help the patient, and in every situation you need to think about it, it will depend on whether you need to operate or not, what kind of operation will be.
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I am an Italian psychologist, currently I am a professor at the University of Sherbrooke, I work in the field of the existential humanist approach, especially the role of the art in palliative care. I am currently researching material on the thought of Ernesto Spinelli. Can you help me find and share material by this great author?
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Thank you for your suggestions.
Yes I tried. I find books on-line, this is ok, but I was interested to articles or interviews of this author. Kind regards Alfonso
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Hi
I’m looking for a research topic for my PhD
I would appreciate any suggestions around topic related to oncology or palliative care and community nursing in hospital settings thank you
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why not find out about diet of patients undergoing radiotherapy or something relevant to public health nursing which is necessary to reach out to these patients.
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I am planning a project with our cancer center to provide training in palliative care and communication skillls to address serious illness.
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This is all I could find; I don't know if there is anything relevant here:
Levit, L. A., Balogh, E., Nass, S. J., & Ganz, P. (Eds.). (2013). Delivering high-quality cancer care: charting a new course for a system in crisis (pp. 7-8). Washington, DC: National Academies Press.
I think this is the relevant ResearchGate link, if you wanted to liaise with any of the authors:
This was the relevant Google Scholar page:
Very best wishes,
Mary
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Can anyone reference me to studies dealing with the effectiveness of animals in mitigating stress in patients under palliative care? An example would equine therapy and the mitigation of PTSD. Thank you.
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My co-authors and I have interviewed over 300 participants about end-of-life choices. We consistently find misconceptions about what hospice entails. What are the common misconceptions you have come across in your research? Why/how do you think the false knowledge is disseminated?
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Most people believe you go to a hospice to die, which is just not the case. We discharge over 50% of admissions. People can be admitted for respite and symptom control, with the aim of getting them back home.
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No matter what the patients’ diagnoses are?
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In the US, palliative care services vary from state to state and by insurance providers. Palliative care is designed to provide relief from pain and other symptoms, support quality of life, and focus on patients with serious advanced illness and their families. This is care that is provided for patients who are not appropriate for hospice care and/or still want curative treatment. It is very helpful for patients who have a serious illness with symptoms that need to be managed from either the disease or the curative treatment.
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We have known that many advanced cancer patients are refused to treat more after standard chemotherapy at Shizuoka Cancer Center, even if they could be estimated to recover with other treatments including thalidomide and celecoxib. They are ordered to select palliative care even though they have a chance to be saved with other treatments.
Please help Japanese advanced cancer patients save their lives from Shizuoka Concentration Cancer Center (President Ken Yamaguchi). They have to die with the cease of respiration after injections of overdose morphine hearing the stream sound of high volume oxygen.
I synthesized highly purified thalidomide in 1999 and treated the patients since 2000. But we are ordered to recall every capsule from the Ministry of Health, Labor and Welfare in 2002. The reason is thalidomide is dangerous medicine. In 2005, we submitted a clinical trial, using thalidomide, celecoxib and low dose gemcitabine for pancreatic cancer, to the Ministry of Health, Labor and Welfare. But the clinical trial for multiple myeloma of Fujimoto Pharmaceutical Corporation with poor medical knowledge was approved by illegal transaction between bureaucrats and the Corporation. Fujimoto Pharmaceutical Corporation should conduct various efficient clinical trials to help the patients with advanced and metastatic cancers.
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IMPROVING QUALITY OF LIFE FOR THE PATIENT AND HIS FAMILY
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Promoting Palliative Care in Hospitals and home care
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Well stated Boleslav. I completely concur that the challenge lies in how we train providers, likely in all countries. That said it is a very challenging space to be in as a provider to be both working towards cure or remission and being sensitive to a patients need to back off from all out treatment. As a nurse it is much clearer as our role is taught as supportive both of the treatment and the patient as a holistic entity. The provider must be making decisions that direct the course of treatment and the patient likely cannot fathom the complexity of the choices and often defers to the providers superior knowledge. This responsibility for the provider is monumental when the outcome effects the life of another human!
In my experiences, related in my previous commnet, I never came across a provider who was uncaring and not wanting what they thought was best for the patient. In particular I had experience with a gifted surgeon who was also one of the best at the bedside that I have ever worked with. The deep caring was evident but it included a blind spot which unfortunately interfered with the patient's desire.
The challenge is very nuanced as education is one facet which must honor societal, cultural, and familial influences. In my experience in a society that demonstrates tremendous challenges talking about and embracing the complexities of life, illness, and death it is often in the small moments when the best work is done. Sometimes they are 30 seconds of being present with the discomfort, pain, and sadness of another amidst the ongoing press of what modern healthcare has become. Ultimately we should all be forgiving of ourselves and others and continually be open finding those moments that we can within the context of finding something larger.
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I am writing about death-competence in Palliative Care nurses and I am searching for a practical tool to assess the current level of death-competence. I would appreciate any recommendations, thank you.
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My colleagues and I in Australia are developing a Death Literacy Index based on the public health palliative care approach.
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I am looking for counseling techniques to help patients face their mortality.
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In my opinion, existential approach is the best in any stage of life. Palliative care patients can also benefit from it. One should find a meaning in life before dies. Here is a useful link for you.
Best
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When a patient is diagnosed with cancer, some families will decide not to let the patient know.
Is there a model to explain why they do not tell the truth to patient?
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I can't see that as a good decision. Because treatment would be impossible if the patient is unaware.
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We need symptoms assement tools in palliative care,
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Purpose of the ESAS This tool is designed to assist in the assessment of nine symptoms common in cancer patients: pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, wellbeing and shortness of breath, (there is also a line labelled “Other Problem”). The severity at the time of assessment of each symptom is rated from 0 to 10 on a numerical scale, 0 meaning that the symptom is absent and 10 that it is of the worst possible severity. The patient and family should be taught how to complete the scales. It is the patient’s opinion of the severity of the symptoms that is the “gold standard” for symptom assessment. The ESAS provides a clinical profile of symptom severity over time. It provides a context within which symptoms can begin to be understood. However, it is not a complete symptom assessment in itself. For good symptom management to be attained the ESAS must be used as just one part of a holistic clinical assessment. best regards
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I would like to obtain permission and use the palliative care knowledge test (PCKT) created by Y. Nakazawa.
Any help would be greatly appreciated.
Thank you
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I'm not familiar with the Nakazawa tool. However, in whatever way you interact with the nurses (written questionnaire, online, in person or online interview), strongly consider providing them with the definition of palliative care you're using in the study.
At least in the United States (and since you're @Capella I'm guessing that's where you'll obtain your respondent sample), palliative care continues to be (mis)intepreted as meaning only end-of-life care. The concept of comfort care is very often overlooked. Providing a definition will not only reduce ambiguity for respondents but can also have learning value.
Good luck
/ramon
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Which competencies are necessary?
How is it taught?
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Hi Kathrin,
Yes Palliative care should be part of occupational therapy curriculum. They form an integral part of multidisciplinary and holistic team approach. There are many research done by Irene Higginson, David Currow, Jennings etc showing importance of OTist in Palliative care. for further information, you can refer to Oxford Textbook of Palliative Medicine 5th ed and Textbook of Palliative and Supportive care.
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Thank you in advance!
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KT Canada and the Joanna Briggs Institute offer a number of knowledge synthesis and meta analysis courses. The KT Canada course is online and the JBI has numerous resources for conducting mixed methods systematic reviews.
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References are welcome!
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Gracias, lo haré como sugieres. Supongo que es que sabes de alguna valoración que hayan hecho al cabo de años, no?
GRACIAS, saludos
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Palliative care
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Fran-
I am the chair of an ad-hoc working group in Western Massachusetts, Nursing Education Palliative Care Interest Group (NEPIG). We meet monthly (including via the online platform ZOOM which is free for attendees to use) to discuss and plan for integration of palliative content into undergraduate nursing programs as well our communities generally. Which professions/education programs are you seeking literature about?
Best,
Olga
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Some students want to assess the understanding of palliative care among healthcare workers.
Can anyone recommend a tool, ie questionnaire for this ?
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Thank you Frieda, these are very interesting approaches and also websites.
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Which areas or subjects in palliative care allow us to conduct a quantitaive study?
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How about medical education?
please note the attached document
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Hi I am currently conducting a literature review on Palliative Care and Intimacy. How can doctors and Allied Health Professions break down the barriers in Hospice settings that enable intimacy for the Patients and their families? I am having a hard time finding the latest research on this subject. Any help would be greatly appreciated. Thank you.
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Hi Tezza, maybe this article can be useful for you!
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There are many terms for the unregulated health care worker including - Assistant in nursing, health care assistant, patient care assistant etc..
Thanks for your help.
Carol
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Thanks Bobbie
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advance care planning 
communication 
barriers to provide palliative care in dementia
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Without doubt, self-care management (SCM) is the best solution to live with diabetes day in and day out. In the world of diabetes care, SCM has gone through an evolutionary process of development of knowledge by providing insight of survival in a challenging social context.
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How about this one?  This one is freely downloadably at site below.  This article also has a hefty list of references (see below).
Journal:  Qualitative Health Research
Title:  The Experience of Living With Diabetes Following a Self-Management Program Based on Motivational Interviewing
Authors:  Lisbeth K. Rosenbek Minet Lisbeth K. Rosenbek Minet
University of Southern Denmark, Odense, Denmark, lisbeth.minet@ouh.regionsyddanmark.dk
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, Else-Marie Lønvig Else-Marie Lønvig
Odense University Hospital, Odense, Denmark
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, Jan Erik Henriksen Jan Erik Henriksen
University of Southern Denmark, Odense, Denmark
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, Lis Wagner Lis Wagner
University of Southern Denmark, Odense, Denmark
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...
First Published April 6, 2011 Research Article DOI: http://dx.doi.org/10.1177/1049732311405066
Article Information
Volume: 21 issue: 8, page(s): 1115-1126
Article first published online: April 6, 2011;Issue published: August 1, 2011
Lisbeth K. Rosenbek MinetUniversity of Southern Denmark, Odense, Denmark, lisbeth. minet@ouh. regionsyddanmark. dk
Else-Marie LønvigOdense University Hospital, Odense, Denmark
Jan Erik HenriksenUniversity of Southern Denmark, Odense, Denmark
Lis WagnerUniversity of Southern Denmark, Odense, Denmark
 
Abstract
Self-management is an important part of diabetes treatment, but the promotion of self-care activities is still a challenge. In this study, we explored how living with diabetes in everyday life was experienced following a self-management intervention program based on motivational interviewing. We conducted seven focus group interviews, each comprising 3 to 5 participants diagnosed with type 1 or type 2 diabetes. Data analysis based on a phenomenological method revealed three main themes concerning diabetes self-management: becoming a self-regulating practitioner, managing the rules of self-management, and creating a supportive social network. Narrative analysis revealed a divergence in patients’ self-perceived competence in handling diabetes. The study findings indicate that people with diabetes have specific needs for support in the daily responsibility of managing diet, exercise, medication, and blood glucose monitoring. A meaningful treatment from the patient’s perspective would appear to be one aimed at overcoming problems the patient experiences in self-management of diabetes.
 
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Steed, L., Cooke, D., & Newman, S. ( 2003). A systematic review of psychosocial outcomes following education, self-management and psychological interventions in diabetes mellitus . Patient Education and Counseling, 51(1),5-15. doi:10.1016/ S0738-3991(02)00213-6 Google Scholar Medline
 
Thorne, S., & Paterson, B. ( 1998). Shifting images of chronic illness. Image: Journal of Nursing Scholarship, 30(2),173-178. doi:10.1111/j.1547-5069.1998.tb01275.x Google Scholar CrossRef
 
van Dam, H.A., van der Horst, F., van den Borne, B., Ryckman, R., & Crebolder, H. ( 2003). Provider-patient interaction in diabetes care: Effects on patient self-care and outcomes. A systematic review. Patient Education and Counseling, 51(1), 17-28. doi:10.1016/S07383991(02)00122-2 Google Scholar Medline
Dennis
Dennis Mazur
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Palliative care for seniors who has goals, palliative care program
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Hello Eleonora, 
this is an interesting document from the Worl Health Organization:
I´m a nurse and I have worked in palliative care for 8 years.
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Hello. I am applying for the position of PDF at NRC for the project you are leading "Reprogramming Cell Death in CART-T Cell".
I have a background in cell therapies and manipulation of primary immune cells. Can you please send me some more info on the project, I want to make sure that i am a good fit for your group.
Thank you
Branka
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Thank you Scott.  No worries, writting my scientific interest part as we speak :)
Branka
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I need specific information including personal interviews, statistical outcomes research, narrow patient populations to describe how nursing care influences patient perceptions and improves patient outcomes throughout the diagnosis and treatment process.
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We are currently doing research on women with breast cancer using the VR technique to reduce pain and anxiety and enhance the quality of life. Once the resutls are formulated and paper get accepted for publication, I will send a copy to you.
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Communication between nurses and patients is a fundamental aspect of cancer care, yet most nurses have had little training in communication. The aspects of communication most valued by patients are those that help patients and their families feel guided, build trust, and support hope. While these may be abstract qualities, they follow from a concrete set of communication skills that can be effectively taught and learned. These communication skills are not the “medical interviewing” skills most physicians learned in medical school, which focused on taking a complete medical, social, and family history. The communication skills needed in cancer care are second-order skills that address difficult situations.
A wide variety of empirical studies document that nurses-patient communication is suboptimal. Physicians and nurses typically miss the full range of concerns held by people with cancer. These deficiencies in communication increase psychological and existential suffering of patients and their loved ones. Compounding these problems are the finding that oncologists lack accuracy in detecting patient distress.
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We have worked out a systematic way to interview cancer patients and I would be happy to share once my work is completed. I agree with you that there are no scales or questionnaires which could fascilitate the work in contemporary practice, but i hope sooner we would be developing  the same.
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I'm interested in pharmacological end-points and gender-specific responses to titrated palliative sedation medications; also other patient-related factors that might affect the sedation trajectory over time; ie how much of a medication will reduce pain and suffering but without inducing unconsciousness.
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This isn't a particular focus in my own work, but I would definitely recommend checking out publications and materials from the Zen Hospice Project and specifically Dr. BJ Miller.  Their entire focus revolves around person-centered palliation at the end of life, and to that end on the development of tailored programs of care for each individual person served.
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There are many tools but which has best data to support use in palliative care setting?
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When patients express a firm - as opposed to a passing - desire for Medically Assisted Rational Suicide (MARS), one important marker for the probable absence of depressive illness is their membership or recorded support of a Right-to-Die society for several years, especially if they were in reasonable health at the time they joined. This is good evidence that their desire for MARS - in their home country if legal, in Switzerland if not - is the product of a long held existential world-view and not of a depressive illness. I only do perhaps a dozen assessments a year but am seeing increasing numbers of people with early Alzheimer dementia for whom palliative care, in their view, has nothing to offer and they do not want to put their families through years of gradual and often undignified annihilation of the personality they knew, loved and conversed with about the important things in their lives.
Another reason why such existential views are unlikely to be pathological is that they are evidently held by a large proportion of the white British population. (Williams N, Dunford C, Knowles A, Warner J. Public attitudes to life-sustaining treatments and euthanasia in dementia. Int J Geriatr Psychiatry. 2007 Dec;22(12):1229-34.)
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  •  Are there any recommendations regarding Voluntary Stopping Eating and Drinking in terminally ill patients?
  •  And what are your experiences with patients in Palliative Care who decide to stop eating and drinking?
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Hello again Angelika,
I now understand your interest in patients who decide to stop eating and drinking with the aim to hasten their death. This issue emerged in this country a few years ago in what was to become a (in)famous case. At the time, it produced a great deal of national debate involving euthanasia supporters, legal experts and the Catholic Church to name but three. 
Please see: 
...for a short item about the case; other news items about it are available.
Dr Martin Woods
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nurses understanding in spiritual beliefs in palliative care
understanding of spiritual needs
assessment of spiritual needs
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Hi Julie,
The attached article is my spin on things. I personally see the context of spiritual belief in palliation more from the existential rather than the meta-physical side of things - but I do see it's place for those with existing or 'new found' religious beliefs as their lives draw to a close.
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I'm looking for a current exploratory analysis of hospices, palliative care and long-term care units efficiency. In my study I would like to transfer specific measures used by international researchers community to be applied to the local (Polish) LTC system. What's especially thrilling is how do researchers reflect the effectiveness of medical treatment applied to PD patients (Parkinson's disease) and cancer patients (C & D groups in ICD-10 classification).
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Your project sounds interesting. I don't have an answer for you regarding exploratory analysis of hospices, etc. Best of luck with your project.
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Am researching the level of knowledge that nurses, particularly those working within Oncology and Palliative Care settings, have of Palliative Radiotherapy.
Would be very grateful for any feedback,
Kim
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Thanks Helen for your feedback and the encouragement!
Kim
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The patientgroup that I want to discuss are only the patients who receive palliative care. It doesn't matter which causal disease the patient has. 
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Dear Jeske
Some patients reported fell last breathless with administrations of oxygen. However You must consider the pathology that the person has.
I send you one example (article)
Regards
Maria Joao C Teixeira
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Currently I am working on palliative sedation of dying patients with symptoms of existential suffering and so I am searching for appropriate assessment-tools for these patients especially when verbal communication is limited.
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The following may give you some ideas, though it's not exactly what you're looking for:
Development of the CASH assessment tool to address existential concerns in patients with serious illness.
By Alesi, Erin R.; Ford, Timothy R.; Chen, Christina J.; Fletcher, Devon S.; Morel, Thomas D.; Bobb, Barton T.; Lyckholm, Laurel J.
Journal of Palliative Medicine, Vol 18(1), Jan 2015, 71-75.
Introduction: Existential suffering in patients with serious illness significantly impacts quality of life, yet it remains a challenge to define, assess, and manage adequately. Improving upon understanding and practice in the existential domain is a topic of interest for palliative care providers. Methods: As a quality improvement project, our palliative care team created an existential assessment tool utilizing a dialogue-oriented approach with four questions designed to identify sources of existential distress as well as strengths and challenges in coping with this distress. The tool utilized the mnemonic CASH, with each letter representing the core objective of the question. Providers who requested the palliative care consult were asked to evaluate the CASH assessment. On completion of the project, palliative care consultants evaluated the appropriateness of the CASH assessment tool. Results: Patient responses to the CASH questions were insightful and reflected their beliefs, priorities, and concerns. Eight of nine providers found that the assessment enabled understanding of their patient. Seven noted a positive impact on their practice, and five reported an improvement in patient care after the assessment. The palliative care consultants who used the tool enjoyed using it, and half of them suggested changes to patient care based on their assessment. The most common reasons for not using the CASH assessment were inappropriateness to the consult, lack of perceived patient/caregiver receptiveness, or consultation service too busy. Conclusion: Our quality improvement project demonstrated that the CASH assessment tool is useful in ascertaining existential concerns of patients with serious illness. It enhances patient care by the primary team as well as the palliative care team. As a brief set of questions with an easy-to-remember mnemonic, the CASH assessment tool is feasible for a busy palliative consult service. Furthermore, the positive results of this project merit more rigorous evaluation of the CASH assessment tool in the future. (PsycINFO Database Record (c) 2015 APA, all rights reserved)
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 Hello,   Does anyone know of any research on parents responses to Prenatal Consultation service after receiving a problematic fetal diagnosis?     I am giving a presentation with Betty Ferrell and a Neonatologist at the Annual Assembly of Palliative care physicians and nurses, Chicago!       We are starting with the 'Parents Voices' in our promotion of Neonatal Palliative Care in every NICU in the US.   
Nancy English
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Karen,  I will send it too you today.    Nancy
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I would start by ensuring that the patient's symptoms are well controlled and reassuring them that there is no hurry, explaining they must be patient for the sake of the family. It is often easier to die than to survive. If time is short we must warn the family and give extra support to them in their anticipatory grieving. Usually it is only one member, often the husband or wife of the patient, or the mother of a young child, who has difficulty in facing facts and the rest of the family need to be drawn in to support the key person. Some caregivers believe that their love is keeping the patient alive. The implication is that he or she will live forever if  I love him enough. Consequently they blame themselves for the death. It is important to talk about that issue and reassure them that they have done everything possible.
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I am keen to find out about using the Promoting Excellence Framework and how this could be used to help care home nurses in care planning for end of life care.
This would be a research proposal for my Masters.
I am planning to use Action Research.
Any ideas or signposting to resources greatly welcomed.
Barbara 
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 How can Indic perspective be integrated in End of Life Care?
Any SUGGESTIONS OR NARRATIVES OR DISCOURSES OR INFORMATION OF any such model of care based on traditional medicine tested anywhere in India/overseas is solicited please. Thank you.
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I would think that you would look to the question and find your answer in that,end of life care is that care which brings comfort and quality of life.  Does it matter where we get that if it brings a happy or adjusted end?  I think not. Traditional medicine as well as holistic or homeopathic medicine can be just as effective in many cases.  I am not a medical doctor but support my clients in whatever way possible.  Some choose to forgo medicine and that is their choice. Medical doctors don't always have all the answers. Thought provoking question!
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What type of education about Indigenous cultures and beliefs is provided for palliative care staff, and to what degree is cultural safety for Indigenous patients considered?
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Thank you very much for sharing these, I am sure to find there helpful information and further inspiration.
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I am searching for research literature and scholars working on Indic perspectives on end of life care. Can anyone who has been working or published in this area may kindly share their experience and published work? Thank you.
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Developing an innovative model of palliative care in the community in brazil
Santiago Rodríguez Corrêa, Mauro Almeida 
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What are the top empirically supported behavioral health interventions for palliative care patients who are dealing with depression and anxiety?
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Thank you very much Beatrice.
Kind Regards,
Jocelyn
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 Oncology ; Cancer of the cervix ; Palliative care ; Dysthanasia
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advanced cervical cancer is very common in our country, India. we assess the patient, if RFT is abnormal, we attempt stenting, antegrade/retrogade, if not feasible- for PCN. And continue with regular treatment of cervical cancer. many a time, they do respond well, that results in removal of PCN/stent
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I am doing a systematic review on palliative care and family caregivers perception, one of the articles I selected for my included studies used a 'stepped-wedge non-randomized trial design'. The Cochrane Library link did not specify any NRS for this design. I would appreciate any valuable link to this type of design for my review.
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Try the QAT tool. it is not the most user friendly but it is  valid and reliable and recommended by Cochrane
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Looking for frameworks to assess competency of health care assistants working in the community with children with complex/palliative care needs. How do we assess that they are safe and competent?
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Hello Sandra
the document mentioned by Mary
relates to Adults only, however there is an entire section on Competences for Health Care Assistants which may be use if you are trying to develop competences for HCA's working in Children's Palliative Care.
The section for nurses does identify competences for Children's Nurses.
Hope this is of help
Michael
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I am researching interventions for staff support within palliative care teams and their effectiveness.
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Two areas I might suggest to research into are resilience and fatigue, their impact and how to prevent burnout and promote well-being. Qualitative studies give insight into staff experience and psychological distress (e.g. Ablett, J. R., & Jones, R. S. P. (2007). Resilience and well‐being in palliative care staff: a qualitative study of hospice nurses' experience of work. Psycho‐Oncology, 16(8), 733-740). Satisfaction and support are two areas I suggest as areas of promoting staff well-being (Pierce, B., Dougherty, E., Panzarella, T., & Le, L. W. (2007). Staff stress, work satisfaction, and death attitudes on an oncology palliative care unit, and on a medical and radiation oncology inpatient unit. Journal of palliative care, 23(1), 32) (Ramirez, A., Addington-Hall, J., & Richards, M. (1998). ABC of palliative care: the carers. BMJ, 316(7126), 208-211.)
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Palliative care is said to improve the care of patients at the terminal stage of their disease process. However, some believed that there is a lack of quality in the palliative care provided. This lack of quality may be viewed in terms of health care professionals' perception, patients'/service users'/ carers' experience, or the influence of public health guidelines and policy on palliative care services.
Trustworthy research references will be beneficial for this inquiry.
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Palliative care, while commonly assumed to deal only with treatment in the last days or weeks of a chronic progressive disease is broader. It can also refer to the range of interventions for persons with chronic pain resulting from a range of non-terminal conditions. Expertise in pain management is in the best cases a focus within the context of a range of rehabilitative, social and psychological services. These are all cases where one won't be cured but life goes on for days, weeks, and years. 
Barriers to such care in all cases is financial. That is, funding agencies are cautious about providing monies for non-curative treatments. In Oregon, in the USA, was the case of a woman denied expensive chemo' treatments (palliative) but offered a speedy physician-assisted termination. There are also barriers in assessing and providing the type of home-based or other aides (mobility, for example a powered wheelchair) and home care where needed. 
Some medical experts in other disciplines find themselves uneasy with chronicity and see such cases as "over," alas. 
Finally, the public is often fearful of "terminal" and "chronic" conditions where relatives, in earlier years, suffered from untreated pain conditions. And, too, they see someone with limits and say "I don't want to be like that". But all our studies show that, today, most train is treatable and that a restricted life is, by the account of those leading such lives (including high spinal injury patients) while different potentially fulfilling.
So the broad movement of the palliative care physician is for care and treatment when a patient can not be cured but can live, with assistance, as full a life as conditions permit.
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I am using this diagram as part of my research in explaining non-medical professionals working with the bereaved. So far I have not found a definitive source. Can any of you help - how should I reference it? 
The attached link is one of many in google images that reference to a different source. 
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The model was developed during the AIDS crisis. Any Health Canada our expert panel came up with this model in 1986 in recognition that some AIDS patients wanted every possible aggressive treatment right up to death in an ICU (upper right angle of line) and also the lower left where at that time patients were in fact palliative at the time of diagnosis sine it was a terminal illness with short life expectancy.
Heideman E, Downing M et al. Caring Together: Report of the Expert Working Group on Integrated Palliative Care for Persons with AIDS. Ottawa: Health & Welfare Canada; 1988
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I'm looking for quantitative studies, which measured the resilience score of a special group of persons. In this case nurses working in palliative care. The best comparison will be with the RS 25 by Wagnild, but also all others.
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The original work on this was done in a book by Mary Vachon in Canada (Occupational Stress in the Care of the Critically Ill, Dying, and Bereaved, 1987). You may consider a more general resilience tool like the RS-25 (Wagnild & Young). You might also contact Dr. Antonio Pangallo who is currently working on this question in palliative care (see http://www.ehospice.com/uk/Default/tabid/10697/ArticleId/9317/). Best wishes,
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Am doing my research on Suffering of Palliative Care Patients.  Can any one suggest the research related to Palliative Patients?
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I agree with all the suggestions mentioned above.  You also might want to look at what happens to suffering when individuals who are close to death have what historically were called Deathbed Visions, now deathbed communications, since many of these experiences are auditory and kinesthetic as well as visual.  I can send you a copy of this article about the research study I carried out on this topic.
Lawrence, M. & Repede, E. (2013) Incidence of death-bed communications and their impact on the dying experience.  American Journal of Hospice and Palliative Medicine, 30 (7), 632-639. 
  My book, the link to Amazon is attached, is about all these experiences surrounding death.   Individuals who have had a near-death experience (NDE) previous to being on palliative care or hospice, I have found, have much less suffering.  One fellow I interviewed and videotaped actually said he couldn't wait to die because he knew it would be as wonderful as his experience during the NDE.  We have always assumed everyone facing death is suffering but there are these exceptions.
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Particularly end of life care.
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THANK YOU KINDLY 
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The Driving Authority in the UK (DVLA) has set a limit for morphine of 80 mcg/litre plasma concentration. Does anyone have any figures giving an idea what this equates to in dose terms for palliative patients?
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Someone needs to study plasma levels of people who are currently taking oral morphine.
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I am working on a post-grad course for board certified chaplains working as advance level clinicians with palliative care teams. Any help in finding resources and articles would be greatly appreciated.  Thanks
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Thanks Beatrice. 
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Not for profit groups are in tight financial times due to lack of clear ways to cover expenses for palliative care. Cost avoidance is helpful but not always easy to sell to consumers. 
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The Australian Federal and state governments have attempted to put a financial value on our service provision through both item numbers for medical service in clinics and hospitals/hospice and multidisciplinary conferencing (MDT), and a second tier of State based calculation on Activity Based Funding and Non-Admitted service provision, which includes nursing. The two systems require us to keep a good deal of statistics and report these back on a monthly basis, as well as through direct billing where appropriate e.g. for clinic services and MDTs. We use patient phase and functional status for the activity based funding for any episode of inpatient/in hospice/non-admitted care for the State government funding formulas. I enclose links to websites.
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Medical technology is able to treat many conditions and maintain life in very old and complex patients as well as younger but with incurable and progressing diseases. Questions as to the benefit of different treatments are rarely asked and discussed neither with families nor with colleagues. Should the term 'futile treatment' be officially used? Should it be mentioned as such or debated in medical records?
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Thank you Alvaro , The question is more as to why has this term not been adopted
by physicians in the daily  clinical jargon..
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I am currently the Palliative Care Clinical Coordinator at our hospital.  We do not have a Palliative Care physician.  Results of recent survey questions have revealed that the majority of staff believe Palliative Care services are of importance but many factors leave them unsure of requesting Palliative Care Nurse consults.  I have been to the ELNEC Train-the-Trainer Course and I am planning to attend an ELNEC CORE Trainer program in the summer but I don't know what education approach would be best when working with our staff. Some have suggested concentrating on a different Palliative Care aspective each month and attend monthly staff meeting on each unit.  Others have suggested online webinar--of which I am not in favor.  I believe there are better outcomes in this particular type education when there are teacher/learner interaction.  If anyone has any ideas, I would definitely appreciatinput.  Thanks so much!
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Good Morning Debra- I am the Director of Palliative Care Services at Univeristy Hospital in San Antonio, Texas.  We have many different levels of training here in our system.  Two of the most effective trainings we offer here have been quite successful.  We offer unit training for nursing staff for each different unit here in our hospital.  We have a 30min, 1hr, and 2.5hr training option.  The unit directors are approached and informed of the opportunity to educate their staff.  These trainings have been very successful and the feed back from the nurses has been overwhelmingly positive.  The presentations are mainly pulled from ELNEC material and source but we also add in unit specific points for the population each unit serves.   Our second training offer is a monthly luncheon series for physician (anyone can attend but the MD's can get CE's).  Each month we focus on a different aspect of palliative care that is related to bedside palliative practice.  In the three years we have been offering this series we have educated over 800 physicians alone. 
I hope this helps in your practice and ability to educate. 
Best, Julieanne Wisloff, RN, BSE, CHPN
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In our practice Hyoscine Butylbromide is used as a subcutaneous bolus dose when required or used in a Continuous Subcutaneous Infusion  CSCI.
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Hi Faye
There is no consistent evidence that shows that one antimuscarinic medication is better than another, nor that any medication has a better effect than placebo (Cochrane review). While they clearly have a physiological effect in volunteers and healthy adults, it might be that the symptom mechanism of death rattle is not well worked out. For example, antimuscarinics are great at drying salivary secretions but not good at drying bronchial or pulmonary secretions which may explain the negative effect in some studies (Bennett papers).  
One study even showed that patients dying with a high anticholinergic load (i.e. getting lots of antimuscarinic medication) had almost 3 times greater chance of getting death rattle. Which suggests that these drugs are not protecting against the symptom! (Sheehan paper) 
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I am writing a small overview about research and publications dealing with moral distress in oncological nursing and palliative care. Moral distress as an aspect of burn out and the wish to change the job or leave the institution actually working for...
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Maybe my study "Challenging situations when administering palliative chemotherapy - A nursing perspective" in European Journal of Oncolgy Nursing, (2014) 18;591-597 could be helpful?
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Outpatient palliative care in oncology.
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Had my first experience of educating nurses on cancer palliative care. As cancer palliative care is a new concept for Sri Lankan nurses the module and the DVD on cancer palliative care we prepared  were appreciated by the nurses.
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I am currently working with my PhD research proposal focusing on developing learning strategies to improve compassionate care among undergraduate nursing students when they are caring for people at end-of-life care period. 
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Not sure if this is useful, but NICE have started producing quality standards, and their end-of-life guidance is here  http://www.nice.org.uk/guidance/qs13/chapter/list-of-statements
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The fundamental objectives of the healthcare management profession are to maintain or enhance the quality of life, dignity, and well being of every individual needing health care services; and to create a more equitable, accessible, effective and efficient healthcare system.Ethical issues near the "end of life" (EOL) often arise because of concerns about how much and what kind of care makes sense for someone with a limited life. If the patient is very old. There is often conflict between physicians or nurses and family members about what is the appropriate care for the patient. (Whether to sustain ones life or to let it perish)
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Because of the advances in medicine over the last 80 years, it has become more difficult to KNOW when someone is dying.  I have been within the hospice movement now for 36 years and currently working with older people in care homes - most of whom have advanced progressive incurable diseases i.e. dementia.  The ethics of prolonging life are an issue in this population as care homes in the UK have come from a background of a 'rehabilitative' focus rather than that of palliative care.  Seeing 'penumonia as the old man's friend' (as I was taught in nursing school) as a release rather than a condition that has to be treated at all costs is very important. Of course a penumonia when the quality of life is good must be treated in older people. But when one is bed-bound with advanced dementia penumonia is often how frail older people die. AFter discussion with staff in the care home and the family (and resident, if they are able) about the situation there comes a point when the most humane and dignified care is to allow the person to die.... We have documents in the UK where conversations during the last year of life are documented about the person's wishes as they approach the end-stage of their life. This is really important for frail older people who need to make their wishes known in case a dementia prevents them in the future. Hope this helps.... Jo
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Palliative care at SKMT
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Thanks a lot friends for sharing info.
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In the UK and some universities in the US and Canada, palliative care was not included as a subject in the medical curricula undergraduate courses. Now more and more schools of medicine are incorporating it. A specific tool, validated or not, could be useful to me and others.
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Thanks for the answer, Koshila. I am really interested in to study longitudinally the influence of to learn (or not to learn!, as "William" would say) in the vision of the medicine of the professional. I knew the work of Mason but the Merril'one is new to me. Any thought would be welcome!
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All of my own searches have resulted in articles in which the ICG was used but not the ICG itself, which is what I need.  Thanks!
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Dear Denise: The ICG developed by Priggerson and team was revised from the original version. Dr Priggerson now recommends using the PG-13 (A 13 question measure of prolonged grief) that they've developed to correspond with the proposed prolonged grief disorder criteria. Tool attached.
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I am in search of counseling material for palliative care of cancer patients.
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Please don't try too hard. Given formulae for counselling in the situation of threatening imminent death are likely to ring false or be inappropriate. Be quiet, pateint, un-prescriptive and listen, first to the patient, then to those family in attendance, then to other carers. Be un-hurried, and  ready to wait. That is why palliative care has an unpopular place in timed and evidence-based medicine. What troubles the patient?  What troubles the family, the carers? Do they have similar assessments of what matters? A most rewarding process.
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There are many studies and articles about the need for perinatal palliative care but I don't find much about caring for the pregnant woman who is diagnosed with a life threatening illness. any one involved i this type of study? 
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Withholding patient progress care notes in the home by nurses seems to be an issue with carers raising suspicion that they are not being told the whole story
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Calling euthanasia palliative care is an anti litigation strategy. If the dose of the palliation medication is increased incrementally then there is no problem with litigation. Carers of course should be informed of why the doses are being increased...this is the responsibility of the 'palliative care doctor/s' Nurses should refer all queries to the the prescriber and not play 'anti-litigation strategies' to please management.
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Looking to streamline our practice and work smarter by allocating and prioritising patients in a more structured manner.  Is anyone using a tool such as RAG etc which is working well?
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  1. To facilitate staff in discharging patients to their preferred place of care and/or death, an end of life discharge planner has been implemented, providing structured guidance to meet needs of patients,their families
  2. Through collaborative working between our palliative care team, SPIRAL bereavement
.... Nottingham University Hospital
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In my center, an academic hospital in Spain, and an ESMO Designated Center of Integrated Oncology and Palliative Care, we are outlining a new protocol for Early Palliative Care intervention in advanced cancer patients. Does anyone have a protocol that is working well in university hospitals?
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Some of you may be interested in the free online resources available through the 'Palliative Care Curriculum for Undergraduates (PCC4U)' project.  PCC4U promotes the inclusion of palliative care education as an integral part of all medical, nursing, and allied health undergraduate and entry to practice training, and ongoing professional development.  Free learning modules (with video vignettes) are available on the following topics: Principles, Communication, Assessment, Optimisation, Multidisciplinary Care, Aboriginal Populations, Caring for Children and Culture-Centred Care.  Also available is a simulation scenario - instructional materials to support the implementation of a palliative care high fidelity simulated learning activity for health care students using an advanced patient simulator (you need a mannequin, associated software and clinical laboratory set up etc).  Visit:  www.pcc4u.org .
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Dementia care mapping and discomfort scales use observable measures of wellbeing which could be useful for monitoring quality of wellbeing in the dying patient, levels of suffering, etc, in people unable to communicate verbally
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Alberta Health Services Appendix 2: Pain Screening and Assessment Tool for Supportive Living Residents/Clients is a short, easy to use tool- Section 1 is a verbal check list, Section 2 Is a check list of non-verbal cues that the person may have pain at rest &/or with movement. It was developed from Grey Bruce Palliative Care/Hospice Association Manual. Section 2 is a valuable tool in that it gives cues that there may be pain, especially in people with advanced dementia.
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