Palliative Care within Long-Term Care Systems: Beyond End of Life?

ObjectiveThe COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities.DesignQualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework.SettingResidential long-term care.Participants23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians.ResultsMotivation barriers include families’ lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population.ConclusionFindings reveal that validating families’ concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.

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Palliative Care within Long-Term Care Systems

Long-Term Care in Europe ◽

10.1057/9781137032348.0021 ◽

2013 ◽

Author(s):

Laura Holdsworth ◽

Georg Ruppe

Keyword(s):

Palliative Care ◽

Long Term Care ◽

Term Care ◽

Care Systems

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Development of a Questionnaire to Determine Incidence and Attitudes to “Voluntary Stopping of Eating and Drinking”

SAGE Open Nursing ◽

10.1177/2377960818812356 ◽

2019 ◽

Vol 5 ◽

pp. 237796081881235 ◽

Cited By ~ 2

Author(s):

Sabrina Stängle ◽

Wilfried Schnepp ◽

Mirjam Mezger ◽

Daniel Büche ◽

André Fringer

Keyword(s):

Palliative Care ◽

End Of Life ◽

Health Professionals ◽

Content Validity ◽

Long Term Care ◽

Systematic Search ◽

Validity Index ◽

Term Care ◽

Content Validity Index

Background “Voluntary stopping of eating and drinking” (VSED) is an option to hasten death at the end of life. There are no data available about incidence of either the explicit VSED or implicit (V)SED nor information about experiences and attitudes of health professionals about VSED in Switzerland. Aims To develop, test, and translate a standardized questionnaire that measures the incidence of VSED, and physicians’ and nurses’ experiences about explicit VSED and implicit (V)SED. Methods The development of the questionnaire was based on a systematic search, which were updated in 2016. The questionnaire was tested by palliative care specialists using standard pretest and content validity index (CVI). Subsequently, a forward/backward translation was made. Results The questionnaire includes 38 items. Feedback of 15 participants in the standard pretest were positive in terms of intelligibility with an average time of 28 minutes. After adjustment, 27 experts validated the items in two rounds. The questionnaire achieves excellent item-CVI values between 0.91 and 1.00 and scale-CVI values of 0.97. The forward/backward translations were each carried out by two independent translators with subsequent building of a consensus through a consultant. Conclusion A mulitlingual questionnaire has been developed, which measures the incidence of explicit VSED and implicit (V)SED. This questionnaire is the basis for a Swiss-wide census of all physicians and nurses of outpatient and long-term care.

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Enhancing Care for Long-Term Care Residents Approaching End-of-Life: A Mixed-Methods Study Assessing a Palliative Care Transfer Form

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120976646 ◽

2020 ◽

pp. 104990912097664

Author(s):

Madelaine Baetz-Dougan ◽

Leora Reiter ◽

Laura Quigley ◽

Daphna Grossman

Keyword(s):

Palliative Care ◽

End Of Life ◽

Acute Care ◽

End Of Life Care ◽

Long Term Care ◽

Transitions Of Care ◽

Life Care ◽

Term Care ◽

Major Barrier

Background: Many barriers exist in providing quality end-of-life care in long-term care (LTC), including transitions of care between acute care and LTC. Transfer forms can be beneficial in ensuring resident’s end-of-life care needs are coordinated between different settings. The NYGH-LTC Transfer Form is a newly developed tool created to enhance care for residents transferred from acute care back to their LTC home for end-of-life. Study Aim: Assess the perceived ease of use, usefulness, and care-enhancing potential of the NYGH-LTC Transfer Form by interprofessional LTC staff. Methods: The study population included interprofessional staff members at 2 LTC homes in Toronto, Canada. Quantitative data was obtained through surveys and qualitative data was obtained through focus groups. Results: There were a total of 34 participants. 79.4% of participants agreed the form was easy to use and 82.4% agreed it would improve care. Subgroup analysis demonstrated that participants with greater than 20 years experience were less likely to agree that it would improve care (p = 0.01). Qualitative analysis generated 4 themes: 1) Strengths, 2) Areas of Improvement, 3) Information Sharing, and 4) Communication. Conclusions: The NYGH-LTC Transfer Form was overall well-evaluated. The form was seen as most useful for those with less experience or less confidence in palliative care. Communication was identified as a major barrier to successful transitions of care and increased bidirectional verbal communication is needed in addition to the form.

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Development and Evaluation of the Caring Ahead: Preparing for End of Life in a Dementia Questionnaire

Innovation in Aging ◽

10.1093/geroni/igaa057.055 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 17-17

Author(s):

Pamela Durepos ◽

Sharon Kaasalainen ◽

Jenny Ploeg ◽

Tamara Sussman ◽

Noori Akhtar-Danesh

Keyword(s):

Palliative Care ◽

End Of Life ◽

Long Term Care ◽

Intraclass Correlation ◽

Healthcare Providers ◽

Measurement Tool ◽

Response Scale ◽

Item Score ◽

Term Care

Abstract A palliative approach is recommended in long-term care to support persons with dementia and help families prepare for end-of-life. Despite this, 50% of family caregivers of persons with dementia report feeling unprepared for death. A questionnaire is needed to assess caregiver death preparedness as an outcome measure for strategies within palliative care. A mixed methods design with qualitative and quantitative phases was used to develop and evaluate the ‘Caring Ahead: Preparing for End-of-Life in Dementia’ questionnaire. The questionnaire has 30 items organized into Medical, Relationship/Personal, Spiritual and Practical subscales with a 7-pt Likert response scale. To date, the questionnaire has been tested with 117 participants who are 61 years old on average, female (86%), adult children (77%) caring for a person with dementia in long-term care. The mean item score is 5.61 (SD 0.71). Participants report limitations in preparedness related to: 1) communication with healthcare providers about traditions and preferences for end-of-life care; 2) knowledge of the dying process and; 3) life purpose after death. A test-retest with 32 participants demonstrates a high degree of reliability; Intraclass Correlation Coefficient 0.91 (CI95%: 0.31-0.97). A moderate positive correlation between participant total scores and a single global preparedness item suggests concurrent validity, r=.66 (CI95%: 0.51-0.80). These findings will be used to refine the questionnaire and contribute a valuable measurement tool for clinicians, researchers and policy-makers working in palliative care.

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Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care

Canadian Journal on Aging / La Revue canadienne du vieillissement ◽

10.1017/s0714980817000253 ◽

2017 ◽

Vol 36 (3) ◽

pp. 306-317 ◽

Cited By ~ 12

Author(s):

Tamara Sussman ◽

Sharon Kaasalainen ◽

Susan Mintzberg ◽

Shane Sinclair ◽

Laurel Young ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Long Term Care ◽

Soins Palliatifs ◽

Term Care ◽

Fin De Vie ◽

Sont Encore ◽

Care Practices ◽

Groupes De Discussion

RÉSUMÉCette étude qualitative canadienne rapporte les résultats de 19 groupes de discussion comprenant 117 participants, incluant des bénéficiaires, des familles et des membres du personnel. Elle avait pour objectifs : 1) d’explorer les soins palliatifs offerts en soins de longue durée (SLD) en vue de faire face aux tensions associées à la prestation de soins aux personnes qui sont encore bien vivantes et celles en fin de vie dans une même communauté de soins et 2) d’identifier des améliorations qui pourraient être apportées aux pratiques en soins palliatifs afin de mieux répondre aux besoins de tous les bénéficiaires en vie ou mourants dans les établissements de SLD, ainsi que celles des familles et du personnel qui leur apportent du soutien. Notre étude a montré que les perspectives liées au confort en fin de vie du personnel en SLD, celles des bénéficiaires et de leurs familles étaient appliquaient à ceux qui se trouvaient en fin de vie ou aux familles qui les soutenaient. Cette compréhension du confort limitait l’intégration des principes de soins palliatifs lors des derniers jours de vie des bénéficiaires. Les résultats de notre étude ont aussi suggéré que le fait de recueillir les perceptions des bénéficiaires liées au confort en fin de vie, de partager l’information à propos de la mort d’un bénéficiaire d’une manière plus personnelle, et de s’assurer que les bénéficiaires, leurs familles et le personnel aient des occasions de participer dans les soins de confort pour les bénéficiaires mourants pouvaient accroître le confort en fin de vie et soutenir une plus grande intégration des principes de soins palliatifs en SLD.

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Attitudes Toward Death, Dying, End-of-Life Palliative Care, and Interdisciplinary Practice in Long Term Care Workers

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2013.11.017 ◽

2014 ◽

Vol 15 (3) ◽

pp. 207-213 ◽

Cited By ~ 34

Author(s):

Bernard-Simon Leclerc ◽

Sabrina Lessard ◽

Coralie Bechennec ◽

Emma Le Gal ◽

Sylvie Benoit ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Long Term Care ◽

Term Care ◽

Attitudes Toward Death ◽

Interdisciplinary Practice ◽

Care Workers

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Care Provider Perspectives on End-Of-Life Care in Long-Term-Care Homes: Implications for Whole-Person and Palliative Care

Journal of Palliative Care ◽

10.1177/082585971002600208 ◽

2010 ◽

Vol 26 (2) ◽

pp. 122-129 ◽

Cited By ~ 20

Author(s):

Joanie Sims-Gould ◽

Elaine Wiersma ◽

Lise Arseneau ◽

Mary Lou Kelley ◽

Jean Kozak ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Care Provider ◽

End Of Life Care ◽

Long Term Care ◽

Life Care ◽

Term Care ◽

Provider Perspectives ◽

Whole Person

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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

BMC Palliative Care ◽

10.1186/s12904-021-00728-z ◽

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.

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