Quality of Life and End of Life Issues

Dementia ◽  
2017 ◽  
pp. 351-380
Author(s):  
Ellen M. Hickey ◽  
Michelle S. Bourgeois
ESC CardioMed ◽  
2018 ◽  
pp. 2940-2944
Author(s):  
Piotr Sobanski

Palliative care (PC) is holistic care that encompasses prevention, assessment, and treatment of symptoms, and addresses the psychological, social, and spiritual problems of ill people and their relatives with the goal of improving quality of life and, finally, dying. It is not an alternative but a supplement to curative treatment, making symptom alleviation and quality of life equally important goals for management and care as healing along the whole disease trajectory. The SENSE model describes elements of PC: Symptom management, dEcision-making, Networking, Support, and End-of-life care. People with heart disease, particularly those with advanced heart failure (HF), benefit from PC care. Pain, breathlessness, tiredness, depression, anxiety, and dry mouth are frequent symptoms among people with HF and could be effectively alleviated with PC. Many of these symptoms, almost constantly present in HF patients, are usually not specifically targeted by medical interventions. Preparedness for anticipatory death improves quality of life during dying for patients and their relatives, and improves satisfaction with care. The greatest challenge still lies in recognizing unmet PC needs and involving a PC team appropriately early, not simply in the very last hours of life. A number of specific issues, such as the modification of implantable cardioverter defibrillator activity or withdrawal of ventricular assist device support, can be addressed by preparing advance directives leading to protecting patients from unwished, usually futile, therapies when they become imminently dying and/or incompetent for decision-making. PC also gives support to cardiology teams in difficult communications on end-of-life issues. Modern PC manages or prevents suffering in people with advanced diseases, independent of diagnosis and prognosis and care for their relatives. It can be provided additionally to disease-specific management as a parallel care, or sometimes as the main care pathway in people close to death as end-of-life care. Parallel PC care should be needs driven; end-of-life care can additionally be prognosis driven. In the majority of cardiological patients PC can/should be delivered by the cardio team that has been treating the person to date and who applies the general PC rules (symptom and distress assessment and management). The PC specialist should ensure consultations in case of difficult/resistant problems, and take the lead in treatment only rarely, if needed. PC acknowledges four dimensions influencing a person’s quality of life: physical, psychological/emotional, spiritual, and social. Each of them needs to be addressed effectively which may require the involvement of a multidisciplinary team. A PC team can provide important support to the treatment team in analysing/solving complex management-related ethical issues.


Author(s):  
Betty R. Ferrell ◽  
Marcia Grant ◽  
Virginia Sun

The goal of nursing research is to improve care for patients and caregivers. Palliative nursing research includes many sensitive topics such as suffering, quality of life, and life meaning. Nurse researchers face many obstacles in conducting research, such as obtaining informed consent, dealing with high subject attrition, and openly discussing end-of-life issues with patients and families. Palliative nursing research also addresses the experiences of nurses and the need for self-care. Palliative nursing research should use an interdisciplinary model that includes all supportive care disciplines.


2014 ◽  
Vol 10 (3) ◽  
pp. e137-e141 ◽  
Author(s):  
Jonathan C. Yeh ◽  
M. Jennifer Cheng ◽  
Christine H. Chung ◽  
Thomas J. Smith

A simple, one-page question prompt list addressing cancer treatment, prognosis, quality of life, and end-of-life issues was well received by new oncology patients and did not affect patient anxiety or physician workflow.


2018 ◽  
Vol 34 (1) ◽  
pp. 18-20 ◽  
Author(s):  
Frank E. Mott ◽  
Kelly C. Adams

Advance Care Planning and End of Life discussions are critical in all cancers but are often overlooked or delayed. Head and Neck Cancer patients have the added stigma of visible morbidity and negative quality of life issues. We present a case example and discussion of these issues in the Head and Neck cancer clinic.


2015 ◽  
Vol 2015 ◽  
pp. 1-10 ◽  
Author(s):  
F. E. Witkamp ◽  
L. van Zuylen ◽  
Y. Vergouwe ◽  
C. C. D. van der Rijt ◽  
A. van der Heide

When patients die relatives and healthcare professionals may appreciate the quality of the dying phase differently, but comparisons are rare. In a cross-sectional study (June 2009–July 2012) the experiences of bereaved relatives, physicians, and nurses concerning the quality of dying in a large Dutch university hospital were compared, and the relation to communication was explored. Measurements were concordance on the quality of dying (QOD) (0–10 scale), awareness of impending death, and end-of-life communication. Results. Data on all three perspectives were available for 200 patients. Concordance in general was poor. Relatives’ scores for QOD (median 7; IQR 5–8) were lower than physicians and nurses’ (both median 7; IQR 6–8) (P=0.002). 48% of the relatives, 77% of the physicians, and 73% of the nurses had been aware of impending death. Physicians more often reported to have informed patients and relatives of end-of-life issues than relatives reported. When both physicians and relatives reported about such discussion, relatives’ awareness of impending death and presence at the patient’s deathbed were more likely. Conclusion. Relatives, physicians, and nurses seem to have their “own truth” about the dying phase. Professionals should put more emphasis on the collaboration with relatives and on verification of relative’s understanding.


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