Breaking News
December 11, 2018 - Antioxidants may prevent cognitive impairment in diabetes
December 11, 2018 - Oral cancer prognostic signature identified
December 11, 2018 - How Can I Find Out What Caused My Miscarriage?
December 11, 2018 - Novel personalized medicine tool for assessing inherited colorectal cancer syndrome risk developed
December 11, 2018 - Study uncovers 11 new genes associated with epilepsy
December 11, 2018 - Filling research gaps could help develop more disability-inclusive workplaces
December 11, 2018 - Cartilage tissue engineering brings good news for patients with cartilage defects
December 11, 2018 - Novel 3D printing workflow helps predict leaky heart valves
December 11, 2018 - Imagination can help overcome fear and anxiety-related disorders, shows study
December 11, 2018 - Are caries linked to political regime?
December 11, 2018 - Leader in Diabetes Clinical Trials Wins Naomi Berrie Award
December 11, 2018 - Scientists discover cellular mechanism that triggers pneumonia in humans
December 11, 2018 - Increasing mental health problems related to drug use in over 55’s
December 11, 2018 - High-intensity interval exercise could help combat cognitive dysfunction in obese people
December 11, 2018 - Annual flu shot can save lives of heart failure patients
December 11, 2018 - Researchers compare health outcomes for VA and non-VA hospitals
December 11, 2018 - Recommendations Developed for Psoriatic Arthritis Treatment
December 11, 2018 - Genetic analysis links obesity with diabetes, coronary artery disease
December 11, 2018 - Study shows that having genetic information can affect how the body responds
December 11, 2018 - UNAIDS Report: 9 Million Are Likely HIV Positive And Don't Know It
December 11, 2018 - Lund University researchers succeed in obtaining dendritic cells by direct reprogramming
December 11, 2018 - Breast tumors recruit bone marrow cells to boost their growth, study reveals
December 11, 2018 - Updated breast cancer screening guideline highlights importance of shared decision-making
December 11, 2018 - EHR-related stress associated with physician burnout
December 11, 2018 - AHA: 12-Year-Old Heart Defect Survivor Inspires NFL Player’s Foundation
December 11, 2018 - Breast cancer patients who take heart drug with trastuzumab have less heart damage
December 11, 2018 - Providing aid to those humans – and animals – affected by the California fires
December 11, 2018 - Even without proof, CBD is finding a niche as a cure-all
December 11, 2018 - Drawing leads to better memory than writing
December 11, 2018 - Researchers report novel findings on plant hormone
December 10, 2018 - A Tale of Two Labels
December 10, 2018 - Triple combination cancer immunotherapy improves outcomes in preclinical melanoma model
December 10, 2018 - A 14-year-old explains what it’s like to get a new heart
December 10, 2018 - Team Players Honored with 2018 Baton Awards
December 10, 2018 - Global report highlights how the changing world is affecting children’s physical activity levels
December 10, 2018 - Genes play a role in physical activity and sleep
December 10, 2018 - DDT in Alaskan fish shown to increase risk of cancer
December 10, 2018 - Laws to curb use of cell phones have greatly reduced fatalities for motorcyclists
December 10, 2018 - Argenx Provides Detailed Data from Phase 2 Clinical Trial of Efgartigimod in Immune Thrombocytopenia and Phase 1/2 Clinical Trial of Cusatuzumab in Acute Myeloid Leukemia
December 10, 2018 - University of Maryland doctors treat first breast cancer patients with GammaPod radiotherapy
December 10, 2018 - The heartbeat seat: Demoing new well-being technologies in a car
December 10, 2018 - Leading Cancer Researcher to Direct Herbert Irving Comprehensive Cancer Center
December 10, 2018 - Researchers explore how glial cells develop in the brain from neural precursor cells
December 10, 2018 - Study compares pain-related diagnoses in First Nations and non-First Nations children, youth
December 10, 2018 - Experts address sleep disorders following traumatic brain injury
December 10, 2018 - Scientists find answers to how cancer spreads
December 10, 2018 - Study explores why older people read more slowly
December 10, 2018 - Smart life-collar could save lives of young children
December 10, 2018 - Asbestos found in most NHS hospitals finds BBC inquiry
December 10, 2018 - Researchers use new technique to probe hydrogen bonds
December 10, 2018 - Music improves social communication in autistic children
December 10, 2018 - Some Brain Tumors May Respond to Immunotherapy, New Study Suggests
December 10, 2018 - Banning junk food ads to combat childhood obesity
December 10, 2018 - Skin Autofluorescence Predicts T2DM, Heart Disease, Mortality
December 10, 2018 - Largest autism sequencing study to date yields 102 genes associated with ASD
December 10, 2018 - Statins associated with low risk of side effects
December 10, 2018 - Episodic memory tests help in predicting brain atrophy and Alzheimer’s disease
December 10, 2018 - Study explores how schools address adolescent self-harming practices
December 10, 2018 - Pregnancy in adolescence linked to increased risks of complications in young mothers
December 10, 2018 - Risk Analysis publishes special issue on communicating about Zika virus
December 10, 2018 - Botox May Help Prevent Post-Op A-Fib
December 10, 2018 - African-American mothers rate boys higher for ADHD
December 10, 2018 - Graphic warning labels cancel out cigarettes’ appeal to young people
December 10, 2018 - Australian researchers to study gas inhalational anaesthetic and likelihood of cancer return
December 10, 2018 - Individual neurons located within the brain have implications for psychiatric diseases
December 10, 2018 - Researchers improve bariatric surgery scoring system to extend prediction time for diabetic remission
December 10, 2018 - HPV type 16 or 18 associated with cervical cancer risk in young women
December 10, 2018 - Cervical cancer risk is higher in women with positive HPV, but no cellular abnormalities
December 10, 2018 - Combo therapy not needed if low RA disease activity achieved
December 10, 2018 - Novel therapeutic targets based on biology of aging show promise for Alzheimer’s disease
December 10, 2018 - UC San Diego professor receives NCI Outstanding Investigator Award for cancer research
December 10, 2018 - Study evaluates placental mesenchymal stem cell sheets for myocardial repair and regeneration
December 10, 2018 - Blueprint Medicines Announces Updated Results from Ongoing EXPLORER Clinical Trial of Avapritinib Demonstrating Broad Clinical Activity and Significant Symptom Reductions in Patients with Systemic Mastocytosis
December 10, 2018 - Study clarifies ApoE4’s role in dementia
December 10, 2018 - Eating disorders now a top priority with Australian Government
December 10, 2018 - Neuronal activity in the brain allows prediction of risky or safe decisions
December 10, 2018 - FDA Alerts Health Care Professionals and Patients Not to Use Drug Products Intended to be Sterile from Promise Pharmacy
December 10, 2018 - Improving dementia care and treatment saves thousands of pounds in care homes
December 10, 2018 - Heroin-assisted treatment can offer benefits, reduce harms
December 10, 2018 - People covered by Michigan’s expanded Medicaid program report improvements in health, finds study
Study highlights need for further evidence to improve symptom management in end of life care

Study highlights need for further evidence to improve symptom management in end of life care

image_pdfDownload PDFimage_print

A study looking at the personal perceptions and experiences of patients, families and healthcare professionals, has highlighted the need for improvement in symptom management in end of life care.

The analysis by the Marie Curie Palliative Care Research Centre at Cardiff University has identified several areas of treatment which were often perceived as sub-optimally managed by healthcare professionals, including; pain, breathing difficulties, nutrition, and hydration. Nutrition and hydration were specifically recognized as being “of significant concern”, particularly for carers.

Pain was identified as the area of symptom management most discussed by respondents with many bereaved carers sharing upsetting or traumatic experiences of their relatives uncontrolled pain. Several questioned the competence and confidence of healthcare professionals in effectively managing pain, while others highlighted reluctance to prescribe or administer adequate analgesia as a barrier to controlling their relative’s pain.

Based on their analysis, the researchers say there is a need for further research to test interventions in these areas, and ultimately, inform an evidence-based approach to clinical care. For example, the researchers point to carers’ concerns around under-recognized pain in patients who are unable to communicate verbally, such as those with dementia, noting that there is currently limited evidence around the validity of pain assessment tools.

Bereaved carers described distressing experiences around artificial nutrition and hydration. The researchers say this highlights the need for improved communication with patients and their carers around the dying process and its impact on eating and drinking. As well as anxiety around denial of food and fluids, some carers described instances where there was pressure from healthcare professionals to administer artificial nutrition despite it being against the patient’s wishes.

Several of the healthcare professionals felt that further research was required to determine the nutritional needs of people towards the end of their lives and that a stronger evidence base was needed around if and when artificial nutrition should be administered. Guidelines outlining hydration and nutrition at end of life have subsequently been developed by the Royal College of Nursing in 2015, and by General Medical Council in 2010, but their impact on practice is currently unknown.

Annmarie Nelson, Professor of Supportive and Palliative Care and Scientific Director at the Marie Curie Palliative Care Research Centre said:

Despite the advances we are seeing in the field of palliative care, symptoms such as pain and breathlessness remain at the forefront of people’s concerns. What this analysis shows is that there are significant concerns around uncontrolled symptoms among patients and carers but also among healthcare professionals who feel that there should be clearer guidance, particularly with regards to nutrition and hydration.

Dr Jessica Baillie, Lecturer in Adult Nursing and RCBC Wales Postdoctoral Research Fellow at the School of Healthcare Sciences at Cardiff University said:

While the findings point to the importance of open and honest conversations between healthcare professionals and patients and carers, there is clearly also a need for more robust evidence around interventions and greater recognition of the fact that palliative care research is currently underfunded. Crucially this evidence should inform clinical practice in order to reduce distress for both patients and their families.

Alana Beaumont (34) was caring for her mum Trish until she died in February this year at the age of 59 from respiratory disease, IPF. Alana describes the “absolutely horrific” experience of watching her mother die with what she feels was uncontrolled pain and breathlessness. She says:

She spent her last moments shouting my name constantly and I know why she was calling my name – it’s because she needed help. It was incredibly traumatic to watch your mum struggle for breath and shout your name. I don’t want anyone else to go through that because all I could do for a long time after she passed was apologize to her.

I did everything I could but there’s nothing else I could have done and I’ve gone through it in my mind over and over, and every time I think ‘I called doctors, I called nurses, I called hospitals, I called specialists’, I called everybody and it was just like I was shouting to no one and I felt very alone.

Researchers conducted an analysis of data from the Palliative and end of life care Priority Setting Partnership (PeolcPSP) with the James Lind Alliance which conducted a UK-wide free-text survey which ran from December 2013 until May 2014 to establish research priorities within palliative and end of life care. For this new supplementary analysis, the team coded the 1403 responses to the survey and identified 190 related to symptoms, nutrition and hydration, which were then analyzed thematically.

Source:

https://www.mariecurie.org.uk/

Tagged with:

About author

Related Articles