scholarly journals Factors Influencing Decision-Making of Terminally Ill Cancer Patients and Their Families Regarding Where to Stay and Receive Final-Month Care: A Preliminary Study

2021 ◽  
Author(s):  
Hayashi Eriko ◽  
Fukano Fumiyasu ◽  
Onishi Hideki
Keyword(s):  
Palliative Care ◽  
Terminal Care ◽  
Family Burden ◽  
Terminal Phase ◽  
Survival Prognosis ◽  
Term Care ◽  
Caregiver Support ◽  
Inpatient Group ◽  
Questionnaire Surveys ◽  
Care Ward

Abstract Background:Advance care planning is essential for a better terminal phase, although many patients do not make a choice regarding the place of receiving terminal care even one month before the expected end of life. This study explores the factors that influence patients with a life-expectancy of less than one month when they are admitted to the palliative care ward or other terminal care institutions.Methods: Self-administered questionnaire surveys were completed by patients and caregiver questionnaire surveys were completed by patients and caregivers. We assessed patient symptoms using Support Team Assessment Schedule-Japan (STAS-J), and all patients’ families answered the self-reported questionnaire, Caregiver Reaction Assessment-Japan (CRA-J).Results: The family care burden score for “Impact on schedule” was significantly higher for the palliative care ward inpatient group than for the non-inpatient group (21.0±1.5 vs. 17.6±1.8; ρ <0.01).Conclusions: Family burden might influence the choice of facility when patients with a survival prognosis of less than one month are admitted to the palliative care ward for reducing the burden of long-term care. Nurses should take care of family caregiver’s physical and psychosocial health, especially before the patient’s admission to the palliative care ward. The results of this study show that caregiver support is needed to reduce the feeling of family burden related to impact on schedule, enabling them to choose the best place for terminal care.

scholarly journals Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?

2022 ◽  
Vol 11 (1) ◽  
pp. 254
Author(s):  
Katharina Linse ◽  
Elisa Aust ◽  
René Günther ◽  
Andreas Hermann
Keyword(s):  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Medical Care ◽  
Caregiver Burden ◽  
Terminal Phase ◽  
Caregiver Support ◽  
Early Integration ◽  
Quality Of Dying ◽  
Experience Of Care ◽  
Lateral Sclerosis

Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (p = 0.004) and without burdening symptoms (p = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; p = 0.002) and stronger caregiver burden (p = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures.

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

2020 ◽  
pp. 026921632096759
Author(s):  
Fenella J Gill ◽  
Zahraa Hashem ◽  
Roswitha Stegmann ◽  
Samar M Aoun
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
English Language ◽  
Support Needs ◽  
Care Needs ◽  
Caregiver Support ◽  
Paediatric Palliative Care ◽  
Heterogenous Population ◽  
Parent Caregivers ◽  
The Individual

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

scholarly journals Evaluating the integration of palliative care in national health systems: an indicator rating process with EAPC task force members to measure advanced palliative care development

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Natalia Arias-Casais ◽  
Eduardo Garralda ◽  
Miguel Antonio Sánchez-Cárdenas ◽  
John Y. Rhee ◽  
Carlos Centeno
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Long Term Care ◽  
Task Force ◽  
National Level ◽  
Structured Interviews ◽  
Term Care ◽  
Care Facilities ◽  
Rating Process

Abstract Background Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. Aim To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. Methods A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. Results The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines. Conclusion Meaningful contributions are being made in Europe towards the integration of PC into the explored fields. These efforts should be assessed in future regional mapping studies using indicators to deliver a more complete picture of PC development.

The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis

2021 ◽  
pp. 104990912110493
Author(s):  
Anish Sethi ◽  
Elyse Everett ◽  
Ambereen Mehta ◽  
Jessica Besbris ◽  
Christa Burke ◽  
...  
Keyword(s):  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Motor Neurons ◽  
Symptom Management ◽  
Medical Specialty ◽  
Care Needs ◽  
Discussion Section ◽  
Caregiver Support ◽  
Hard Times ◽  
Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.

Combating Coronavirus Disease-2019 Outbreak in Long-Term Care Facilities for Frail Older Adults: Preventive Measures and Palliative Care Go Hand-in-Hand

2021 ◽  
pp. 082585972110393
Author(s):  
Hon Wai Benjamin Cheng
Keyword(s):  
Palliative Care ◽  
Long Term Care ◽  
Care Delivery ◽  
Nursing Home Residents ◽  
Respiratory Illness ◽  
Term Care ◽  
The People ◽  
Care Facilities ◽  
Novel Coronavirus

While the whole population is at risk from infection with the coronavirus, older people—often frail and subject to multimorbidity—are at the highest risk for the severe and fatal disease. Despite strict infection control and social distancing measures, frail adults in long-term care facilities may be at particular risk of transmission of respiratory illness. Treatment decisions are often complex attributed to the heterogeneity of this population with regards to different geriatric domains such as functional status, comorbidity, and poly-pharmacy. While measures must be taken to prevent the novel coronavirus from spreading through these facilities, it is also essential that residents with coronavirus disease 2019 (COVID-19) have access to the symptom management and support they want and deserve. What most nursing home residents want during the course of their illness is to be able to stay in their facilities, to be surrounded by the people they love most, and to feel relief from their physical and emotional pain. By addressing the limited access to hospice and palliative care delivery in nursing homes, we can prevent unnecessary suffering and pain from COVID-19 as well as lay the groundwork for improving care for all residents moving forward.

Palliative care: Long-term solution for long-term care–Part I (CE)

2001 ◽  
Vol 6 (3) ◽  
pp. 90-99
Author(s):  
Mellar P. Davis ◽  
E.Duke Dickerson ◽  
Marco Pappagallo ◽  
James Varga ◽  
John Shuster ◽  
...  
Keyword(s):  
Palliative Care ◽  
Long Term Care ◽  
Term Care

scholarly journals Current Trends and Possibilities of Providing Medical Palliative Care in Chronic Heart Failure

Kardiologiia ◽  
2019 ◽  
Vol 59 (1) ◽  
pp. 84-92
Author(s):  
V. N. Larina ◽  
I. I. Chukaeva ◽  
V. G. Larin
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Chronic Heart Failure ◽  
Terminal Phase ◽  
Treatment Resistant ◽  
Current Trends ◽  
Appropriate Care ◽  
High Prevalence ◽  
Oncological Diseases ◽  
Specialized Palliative Care

Chronic heart failure (CHF) is an important healthcare problem because of high prevalence, morbidity and mortality rates. Treatment resistant symptoms, need for communication and support, unite patients with CHF and oncological diseases but despite that CHF patients rarely receive specialized palliative care (SPC). This review is devoted to the need and possible ways of providing SPC to patients with CHF and their families. We discuss here variants of CHF course in terminal phase, the term end of life appropriate care, various specialists’ concepts of SPC delivering to CHF patients in accordance with their preferences.

scholarly journals MaineHealth: Development, Implementation, and Success in Telehealth for Home Care

2018 ◽  
Vol 2 (5) ◽  
Author(s):  
Robert Abel
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Long Term Care ◽  
Opinion Leaders ◽  
Term Care ◽  
National Conference ◽  
Chief Nursing Officer ◽  
Care At Home ◽  
Medicine Today

No abstract available. Editor’s note: On March 16th and 17th, 2017, Telehealth and Medicine Today convened a national conference of opinion leaders to discuss and debate “Technologies and Tactics Transforming Long-term Care.” What follows is the lecture by Robert Abel who is the Chief Nursing Officer and Director of Palliative Care for MaineHealth Care at Home, a member of the MaineHealth system.

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