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.

scholarly journals End-of-Life Care at a Community Cancer Center

2012 ◽  
Vol 8 (4) ◽  
pp. e40-e44 ◽  
Author(s):  
David E. Cowall ◽  
Bennett W. Yu ◽  
Sandra L. Heineken ◽  
Elizabeth N. Lewis ◽  
Vishal Chaudhry ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Symptom Management ◽  
End Of Life Care ◽  
Cancer Center ◽  
Improve Quality ◽  
Life Care

Early concurrent palliative care and earlier hospice admission may improve quality of life because of better symptom management and avoidance of aggressive and/or toxic therapies at end of life.

End-of-Life Care in Non-Cancer Illnesses

2012 ◽  
Vol 5 (6) ◽  
pp. 351-359 ◽  
Author(s):  
Hayley Cousins ◽  
Richard Cassell ◽  
P.-J. Morey
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Specialist Palliative Care ◽  
Patients With Cancer ◽  
Disease Trajectory ◽  
Practical Guidance

End-of-life care is that which is provided to patients experiencing a progressive final decline in their lives, usually with a prognosis of less than a year. End-of-life care in non-cancer illness may be challenging for GPs because of the uncertainty about disease trajectory. Patients with non-cancer illness often experience similar symptoms to patients with cancer but for longer hence with a greater impact on quality of life. Only a minority of such patients need specialist palliative care input so the generalist needs to be confident in assessing, treating and supporting patients and families. This article offers suggestions to overcome the challenges along with practical guidance on managing symptoms in the most common non-cancer illnesses.

Integrative Nursing in Palliative Care and End-of-Life

2018 ◽  
pp. 491-507
Author(s):  
Julie Katseres ◽  
William E. Rosa
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Popular Belief ◽  
Centered Care ◽  
Primary Healing

Contrary to popular belief, palliative care, or hospice, is not withdrawing care but rather shifting the focus from curing disease and illness to a journey of living with disease/illness, optimizing quality of life, while at the same time finding value and meaning in the transitions toward conscious dying—guiding the sacred passage. The purpose of this chapter is to disarm the fear and discomfort around illness and death through exploring integrative nursing principles that guide palliative and end-of-life care and by reframing how care is delivered during these crucial moments, inviting an ethic of evolving human-centered care with nurse as the primary healing instrument.

scholarly journals Enabling occupation at the end of life: A literature review

2015 ◽  
Vol 13 (6) ◽  
pp. 1755-1769 ◽  
Author(s):  
Katherine Mills ◽  
Angela Payne
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Occupational Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Well Being ◽  
Life Care ◽  
Palliative Care Teams ◽  
Community Environments

ABSTRACTObjective:Occupation, or meaningful activity, can contribute to the well-being and quality of life of all individuals. It is thus a logical tautology that occupation should be enabled for those at the end of life. Our present review examines current provision of these processes by Occupational Therapist, who can be much-valued members of multidisciplinary palliative care teams.Method:Following a literature search and critical selection, 10 global papers were identified examining occupation and occupational therapy at the end of life in the acute, hospice, and community environments.Results:Universally, there appeared to be a dearth of therapists working in end-of-life care. Provision of palliative care in hospitals was found to be compensatory or rehabilitative. Hospice therapy emerged as pleasingly occupational, though the number of hospice places was disappointingly few. Community literature was sparse, so it proved challenging to draw definitive conclusions. Promising research refracted light on occupation at home; however, it also revealed stretched domiciliary services, where clients are not well informed about the potential scope of occupational therapy.Significance of Results:A “good death” involving a quality end-of-life experience is the foundational goal overarching all therapy and medicine in the provision of palliative care. Arguably, an occupation-focused approach provided by therapists meets client needs to enable meaningful experiences in the limited time left to them. Current occupational therapy practice environments are not necessarily achieving these goals in commensurate fashion. There is a need to promote the role of occupational therapy and circumscribe what therapists can offer. Further research is necessitated across all environments and future funding for therapist positions in palliative teams. End-of-life care can be complex and challenging; however, therapists can facilitate fulfillment of client-centered occupational goals. In engaging with personally constructed nuances of meaning, quality of life can be improved in those deserving of a significant and emotionally rich daily existence during their final days.

The role of the dietitian in palliative care

2021 ◽  
pp. 219-224
Author(s):  
Samantha Cushen ◽  
Aoife Ryan
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Nutritional Support ◽  
Symptom Relief ◽  
Nutritional Therapy ◽  
Life Care

In palliative care, the aims of nutritional support change with an emphasis on quality of life and symptom relief as opposed to active nutritional therapy. The concept of palliative nutrition has evolved to include all aspects of the palliative trajectory, not just end of life care, with each stage of the trajectory having different nutritional goals. The role of the dietitian in palliative care is a topic that until recently remained relatively unexplored. This chapter introduces the concept of diet as a potential survivorship intervention as opposed to nourishment only and contextualizes the dietitian’s role in palliative care.

Fact file 9: Palliative care

2017 ◽  
Author(s):  
Daisy Fancourt
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Improve Quality ◽  
Spiritual Support ◽  
Life Care ◽  
Seriously Ill Patients ◽  
Seriously Ill

Palliative care is support for seriously ill patients and their families. The aim of palliative care is to minimize pain and discomfort as much as possible and provide psychological, social, and spiritual support. An important part of palliative care is end-of-life care, which aims to improve quality of life as much as possible while patients are alive and then help them to die with dignity....

scholarly journals Palliative and End-of-Life Care for Patients With Hematologic Malignancies

2020 ◽  
Vol 38 (9) ◽  
pp. 944-953 ◽  
Author(s):  
Areej El-Jawahri ◽  
Ashley M. Nelson ◽  
Tamryn F. Gray ◽  
Stephanie J. Lee ◽  
Thomas W. LeBlanc
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hematologic Malignancies ◽  
Life Care ◽  
Care Needs ◽  
Patient Reported ◽  
Care Models

Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients’ palliative and end-of-life care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patient-reported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population.

Fatigue and lethargy in palliative care

2020 ◽  
Vol 13 (5) ◽  
pp. 268-272
Author(s):  
Amarjodh Landa
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Ageing Population ◽  
Life Care ◽  
Wide Range ◽  
Significant Symptom

Fatigue is a particularly vague, yet significant symptom, which is commonly encountered in primary care. It affects a wide range of patients and has many causes. With an ageing population, fatigue is more likely to be multifactorial towards the end of a person’s life, and this can provide challenges in recognition and management. Patients are often incapacitated due to their fatigue and helping to manage it can lead to an improved quality of life. This article aims to briefly summarise the symptoms of fatigue, how to recognise it and the various causes. Current literature on the management of fatigue in end-of-life care, including pharmacological options, is critically reviewed.

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