End of life: Wishes, values and symptoms, and their impact on quality of life and well-being

2018 ◽  
Author(s):  
David Oliver
Keyword(s):  
Quality Of Life ◽  
Disease Progression ◽  
End Of Life ◽  
Ventilatory Support ◽  
Well Being ◽  
Non Invasive ◽  
Non Invasive Ventilation ◽  
Advance Care ◽  
Made In

The holistic assessment of the patient with ALS and their family will help to maximize the care as the disease progresses and the end of life approaches. This includes consideration of advance care planning, so that the person’s wishes are known if they lose capacity or communication late in the disease course. Discussion of ventilatory support, either by non-invasive ventilation or tracheostomy ventilation, is particularly important so that decisions are not made in a crisis situation. Although ventilatory support may improve quality of life (QoL) and length of survival, there may be increased dependency and continued disease progression. The recognition of the later stages of disease progression can allow further discussion and anticipation and preparation for end of life care—for patient, family, and professions—so that QoL is maximized until death.

Health and Well-Being in the Year before Death: The Association with Quality of Life and Care at the End-of-Life

2020 ◽  
Vol 32 (10) ◽  
pp. 1475-1485
Author(s):  
Hyo Jung Lee ◽  
Brent J. Small ◽  
William E. Haley
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
Latent Class ◽  
Well Being ◽  
Care Plans ◽  
Advance Care ◽  
Using Data ◽  
Health And Well Being

Objective: We examined whether older adults’ health and well-being during their final year of life predicts end-of-life (EOL) quality of life (QOL) and quality of care (QOC). Methods: Using data from deceased participants ( n = 1125) in the 2011–2015 National Health and Aging Trends Study, we performed latent class analysis to identify profiles of health and well-being, and we examined the association between these classes and EOL QOL and QOC. Results: Four classes were identified: healthy/happy (20%), frail/happy (37%), cognitively impaired/moderately distressed (27%), and highly impaired/highly distressed (16%). Persons in the highly impaired/highly distressed class showed a poorer QOL at the EOL, whereas those in the healthy/happy class reported a lower level of QOC at the EOL. Discussion: The benefits of maintaining health and well-being often carry forward to EOL. Older adults with high impairment and distress merit greater attention such as assuring care and advance care plans.

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

Effect of non‐invasive ventilation on survival, quality of life, respiratory function and cognition: A review of the literature

2006 ◽  
Vol 7 (4) ◽  
pp. 195-200 ◽  
Author(s):  
Sanne Piepers ◽  
Jan‐Paul Van Den Berg ◽  
Sandra Kalmijn ◽  
W‐Ludo Van Der Pol ◽  
John H. J. Wokke ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Respiratory Function ◽  
Invasive Ventilation ◽  
Review Of The Literature ◽  
Non Invasive ◽  
Non Invasive Ventilation

Exploring the feasibility of a music-assisted relaxation intervention to assist with the initiation of non-invasive ventilation in people with Motor Neuron Disease

2017 ◽  
Vol 9 (2) ◽  
pp. 86
Author(s):  
Jeanette Tamplin ◽  
Felicity A Baker ◽  
Rebecca Davies ◽  
Eleanor Bajo ◽  
Karen Bolger ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Qualitative Data ◽  
Small Sample ◽  
Invasive Ventilation ◽  
Positive Effects ◽  
Non Invasive ◽  
Non Invasive Ventilation

Background: Transitioning to non-invasive ventilation (NIV) can cause anxiety in people with Motor Neuron Disease (MND), which may reduce adherence rates. Music therapy has demonstrated positive effects with mechanical (invasive) ventilation.Method: This feasibility study examined the effects of music-assisted relaxation (MAR) on NIV adherence, anxiety, and quality of life for people with MND. Data were collected at baseline, 7-days post, and 3-months post NIV implementation.Results: Of 18 consenting participants, 15 chose the MAR condition. Results suggested that supporting NIV transition within the first 7 days may be advantageous for long-term adherence. No effects were found for anxiety or quality of life. Limitations included small sample size, lack of an adequate control, and possible ceiling effects on the instruments used. Qualitative data indicated most participants considered the relaxing and distracting effects of MAR were useful.Conclusions: In this small sample, we found some demand for and acceptability of a music-based intervention in this setting. Participants reported differing experiences of using MAR, and there were technical and logistical issues regarding timely and accessible provision of a MAR intervention within the treatment trajectory of NIV implementation. Conflicting quantitative and qualitative data support the need for mixed method research in this area.

Making Advance Directives Visual: Introducing Young Adults to Advance Care Planning With Video-Recorded Advance Directives

2019 ◽  
Vol 25 (4) ◽  
pp. e44-e51
Author(s):  
Cameron Kiersch ◽  
Teddie Potter
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
Advance Directive ◽  
Planning Process ◽  
Care Planning ◽  
Advance Care ◽  
Definition Of

The complexities surrounding the dying process may distort rational decision-making and impact care at the end of life. Advance care planning, which focuses on identifying the individual's definition of quality of life, holds great potential to provide clarity at the end of life. Currently, young adults are not the intended audience for advance care planning. A quality improvement project engaged 36 college-age adults in structured group advance care planning discussions and evaluated the perceived value of a self-recorded advance directive. Findings from a pre- and postintervention survey suggested that young adults welcomed a conversation about end-of-life care; they wished for more information and expressed that a video-recorded advance directive stimulated thoughts about their own definition of quality of life. Participants' improved self-perception of comfort, confidence, certainty, and knowledge regarding the advance care planning process and end-of-life care indicated young adults may be a willing and eager population for the expansion of advance care planning. In addition to directing advance care planning to a younger audience, a personal video-recorded advance directive may complement the current advance care planning process and aid individuals in defining their quality of life.

Outcomes Associated with End-of-Life Discussions (DRAFT)

2018 ◽  
Author(s):  
Masanori Mori
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Aggressive Care

Physicians and advanced cancer patients are often reluctant to talk about death. They frequently avoid end-of-life discussions (EOLds), although such conversations are essential to initiate advance care planning. In this prospective, a longitudinal multisite cohort study of advanced cancer patients and their informal caregivers, the authors suggested cascading benefits of EOLds between patients and their physicians. In total, 123 of 332 (37.0%) patients reported having EOLds with their physicians at baseline. EOLds were not associated with higher rates of emotional distress or psychiatric disorders. Instead, after propensity-score weighted adjustment, EOLds were associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care was associated with worse patient quality of life and worse bereavement adjustment. These findings may help destigmatize EOLds and assist physicians and patients in initiating such conversations and engaging in advance care planning.

scholarly journals Eating Experiences of People with Disabilities: A Qualitative Study in Spain

Healthcare ◽  
2020 ◽  
Vol 8 (4) ◽  
pp. 512
Author(s):  
Carmen Cipriano-Crespo ◽  
Marta Rodríguez-Hernández ◽  
Pablo Cantero-Garlito ◽  
Lorenzo Mariano-Juárez
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Well Being ◽  
Food Ingestion ◽  
Perceived Burdensomeness ◽  
Intervention Models ◽  
Definition Of ◽  
Functional Deficiency ◽  
Made In

Background: Disability causes changes in the eating process, which is central to the definition of each individual’s social and psychological spaces. Methods: This is a qualitative study based on grounded theory. Interviews were carried out in clinical hospital settings and headquarters of several disability organisations. The study included 27 individuals, aged between 18–75 years. All participants had a disability that caused a functional deficiency in the occupational aspects of the eating process. Results: The respondents’ narratives were analysed through observations made in different contexts, allowing us to describe and understand the significance attributed by the participants to their reality and experiences. Three key themes emerged from the analysis: (1) waning bodies (assumption of a diminished corporality); (2) redefinition of food-related social spaces; and (3) perceived burdensomeness, shame, and loneliness. Conclusions: Assisted feeding tends to prioritise the nutritional component of food ingestion. However, cultural, social, and contextual factors have a critical impact on an individual’s well-being and quality of life. This study stresses the importance of re-addressing intervention models affecting differently-abled people and incorporating approaches that take into account the contextual aspects of occupational therapy.

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