Quality of life and decision making around end of life care

2021 ◽  
Author(s):  
Samantha Lindley
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

Palliative and end-of-life care in elderly subjects with cardiovascular disease

ESC CardioMed ◽  
2018 ◽  
pp. 2940-2944
Author(s):  
Piotr Sobanski
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Ventricular Assist ◽  
Assessment And Treatment ◽  
Life Issues ◽  
End Of Life Issues

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.

scholarly journals Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
Person Centered Care ◽  
Centered Care ◽  
The Relationship

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.

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.

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.

Incorporating patient preferences and priorities into end-of-life care.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 41-41
Author(s):  
Eric Rackow ◽  
Afua Ofori ◽  
Wendy Rodkey ◽  
Roy A. Beveridge
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
End Of Life Care ◽  
Medical Decision Making ◽  
Case Managers ◽  
Readiness For Change ◽  
Medical Decision ◽  
Decision Making Process ◽  
Life Care

41 Background: Patients with advanced illness often face painful conversations and difficult decisions. A program was deployed to help patients identify, communicate, and incorporate their personal preferences and priorities into decisions about their care. The program was assessed by measuring movement along the readiness for change continuum. Methods: Patients residing in the home and participating in a chronic care program were referred by their case managers based on clinical conditions and whether the patient appeared to be in their last 12 months of life. Counseling sessions with patients or family caregiver/s were designed to move participants toward the following actions: be fully informed about their medical situation, describe their detailed quality of life priorities, articulate a self-defined medical decision making process, effectively communicate to their family and physicians, and implement and repeat the aforementioned steps. After 5 months (Sept-2014 to Feb-2015), movement along the readiness for change continuum (pre-contemplation, contemplation, preparation, action, maintenance, and advocacy) was reported. Results: Of the 427 patients referred, 33 could not be reached, 116 were ineligible, 50 declined or did not engage. Of the 228 participants, 191 (84%) moved at least one step in readiness for change continuum over the 5-month period. In Nov-2014, 13% of participants were in action, maintenance, or advocacy, which increased to 19% by Feb-2015. The largest observed movement to action, maintenance, or advocacy was in defining quality of life priorities: 2% Nov-2014 to 21% Feb-2015. The least movement to action, maintenance, or advocacy was observed in articulating a self-defined medical decision making process: 3% Nov-2014 to 16% Feb-2015. Case managers reported discomfort in referring members based on their assessment of length of life. Early surveys show high levels of satisfaction. Conclusions: A very high percentage of patients progressed in incorporating their preferences and priorities into end of life care as measured by the readiness to change continuum. This program is currently expanding and the referral process is changing from case manager to algorithm based identification referrals.

scholarly journals End-of-life Care Preferences among Cancer Patients in Southern Thailand: A University Hospital-based Cross-Sectional Survey

2021 ◽  
Author(s):  
Jarurin Pitanupong ◽  
Sahawit Janmanee
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
University Hospital ◽  
Life Care ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
At Home

Abstract Background: End-of-life care preferences may be highly individual, heterogenic, and variable according to culture and belief. This study aimed to explore preferences and factors associated with end-of-life care among Thai cancer patients with the goal of helping optimize their quality of life.Methods: A cross-sectional study surveyed cancer outpatients at Songklanagarind Hospital from August to November 2020. The questionnaires inquired about: 1) personal and demographic information, 2) experiences with end-of-life care received by relatives, and 3) end-of-life care preferences. To determine end-of life preferences, the data were analyzed using descriptive statistics. The data concerning patient demographics and end-of-life care preferences were compared using Fisher’s exact test. Results: The majority of the 96 cancer outpatients were female (65.6%), and the overall mean age was 55.8 ±11.6 years. More than half of them had an experience of observing someone die (68.8%), and they were predominantly satisfied with the care received by their relatives in passing away at home surrounded by family (47.0%) and being conscious until the time of death (68.2%). Most participants preferred receiving the full truth regarding their illness (99.0%), being free of uncomfortable symptoms (96.9%), having their loved ones around (93.8%), being mentally aware at the last hour (93.8%), and having the sense of being meaningful in life (92.7%). Their 3 most important end-of-life care wishes were receiving the full truth regarding their illness, disclosing the full truth regarding their illness to family members, and passing away at home. Conclusion: In order to optimize the quality of life of terminal patients, end-of-life care should ensure they receive the full truth regarding their illness, experience no distress symptoms, remain mentally aware at the last hour of life, feel meaningful in life, and pass away comfortably with loved ones around.

Deprescribing in end-of-life care

2019 ◽  
Vol 24 (10) ◽  
pp. 474-477
Author(s):  
Emma Gardner
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
End Of Life Care ◽  
Management Plan ◽  
Life Care ◽  
Patient Expectation ◽  
Essential Drugs ◽  
Pharmacy Management

The aim of deprescribing in end-of-life care is to improve the patient's quality of life by reducing their drug burden. It is essential to engage the patients and enable them to make choices about medications by discussing their preferences and implement a pharmacy management plan. Withdrawing medications during the end stages of life is extremely complex because the period of care varies substantially. The aim of this article is to address polypharmacy within end-of-life care. It will review which medications should be stopped by examining the non-essential and essential drugs. The intention is to encourage an approach to care which provides an equal balance between treatment and patient expectation.

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