“Please, I want to go home”: ethical issues raised when considering choice of place of care in palliative care

Wheatley, Victoria J.; Baker, Justin N.

doi:10.1136/pgmj.2007.058487

Cited by 42 publications

(25 citation statements)

References 25 publications

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“…Often, we, the doctors, fail to balance between medical knowledge, acceptance of a patient's caregiver's wishes and respecting the autonomy and wishes of the patients. A similar result was noted in the UK where 80% of cases were decided by doctors about the end-of-life issues over the individual's/patient's preferences in the interest of providing the best care [20].…”

Section: Can Doctors Be Wrong?supporting

confidence: 64%

To Treat or Not to Treat

Chatterjee

2019

Health and Wellbeing in Late Life

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In this famous poem, Nobel Laureate Rabindranath Tagore welcomes death as a natural closure to life. But how many of us possess this clarity of considering death as a natural course of life itself, particularly when we are approaching our latter half of life. In this chapter, I would like to discuss the moment that often comes during every doctor's practice and is always a difficult choice. On a busy afternoon of 16 April 2016, I received a forwarded email from our head of the department Dr. A. B Dey, who was in Toronto for an official trip: Dear Doctors, I have been informed by the Prime Minister Office that the Department of Geriatric Medicine at A.I.I.M.S is best equipped (with dedicated beds for 80 plus patients) to look into my concern regarding the below-mentioned case: O thou the last fulfillment of life, Death, my death, come and whisper to me! Day after day I have kept watch for thee; for thee have I borne the joys and pangs of life. All that I am, that I have, that I hope, and all my love has ever flowed towards thee in depth of secrecy. One final glance from thine eyes and my life will be ever thine own. The flowers have been woven and the garland is ready for the bridegroom. After the wedding, the bride shall leave her home and meet her lord alone in the solitude of night [1]. Noble laureate Rabindranath Tagore

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Section: Can Doctors Be Wrong?supporting

confidence: 64%

To Treat or Not to Treat

Chatterjee

2019

Health and Wellbeing in Late Life

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“…Approximately, 70% of palliative care patients wish to be cared for at home at the end of life, although only 25% of them die at home. 34 Supporting the patient-caregiver dyads to avoid early, unnecessary transitions to a care facility is important to meet the patient's desire to remain at home. Yet, if patients need to transfer to a facility, the place must be a dementia-friendly environment to make the transition as comfortable as possible.…”

Section: Selection Of a Facility With Limited Financial Supportmentioning

confidence: 99%

Adapting the Resilience Framework for Family Caregivers of Hospice Patients With Dementia

Han

Chi

Han

et al. 2019

Am J Alzheimers Dis Other Demen

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Family caregivers face ongoing, formidable stress and burden. Caregivers need sustainable support to maintain resilience. We aim to identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of 39 family caregivers of hospice patients with dementia. The resilience framework was used to guide the coding and synthesis of the qualitative data. Identified challenges included difficulties in communication, providing care and decision-making, lack of knowledge, emotional challenges, concern about care facility selection, death with dignity, and lack of public awareness. Resilience resources for caregiving challenges were identified at the individual, community, and societal levels. Anticipated benefits of using these resources included the ability to provide better care and have a better quality of life for both patients and caregivers. The findings of this study can guide the design and implementation of supportive interventions designed for family caregivers of hospice patients with dementia to bolster available resilience resources.

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“…If attempts are made to protect participants, and bereaved relatives in particular, they are excluded and patronised [35]. There is a balance between autonomy and non-maleficence [36,37]. The ACE Study has attempted to include people and offer support without assuming they cannot cope, in which we are guided by existing models of acceptable practice [38].…”

Section: Discussionmentioning

confidence: 99%

Understanding Hospital Admissions Close to the End of Life (ACE) Study

Morris

Fyfe²,

Momen

et al. 2013

BMC Health Serv Res

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BackgroundPalliative care is a policy priority internationally. In England, policymakers are seeking to develop high quality care for all by focusing on reducing the number of patients who die in acute hospitals. It is argued that reducing ‘inappropriate’ hospital admissions will lead to an improvement in the quality of care and provide cost savings.Yet what is meant by an ‘inappropriate’ admission is unclear and is unlikely to be shared by all stakeholders. The decision process that leads to hospital admission is often challenging, particularly when patients are frail and elderly. The ACE study reopens the idea of ‘inappropriate’ hospital admissions close to the end of life. We will explore how decisions that result in inpatient admissions close to death are made and valued from the perspective of the decision-maker, and will consider the implications of these findings for current policy and practice.Design/MethodsThe study focuses on the admission of patients with advanced dementia, chest disease or cancer who die within 72 hours of admission to acute hospitals. The study uses mixed methods with three data collection phases. Phase one involves patient case studies of admissions with interviews with clinicians involved in the admission and next-of-kin. Phase two uses vignette-based focus groups with clinical professionals and patients living with the conditions of interest. Phase three uses questionnaires distributed to clinical stakeholders. Qualitative data will be explored using framework analysis whilst the questionnaire data will be examined using descriptive statistical analysis. Findings will be used to evaluate current policy and literature.DiscussionSignificant ethical and validity issues arise due to the retrospective nature of phase one of the study. We are not able to gain consent from patients who have died, and the views of the deceased patients cannot be included directly, which risks privileging professional views. This phase also relies on the memories of the participants which may be unreliable. Later phases of the study attempt to compensate for the “absent voices” of the deceased patients by including next-of-kin and patient focus groups.

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“Please, I want to go home”: ethical issues raised when considering choice of place of care in palliative care

Cited by 42 publications

References 25 publications

To Treat or Not to Treat

To Treat or Not to Treat

Adapting the Resilience Framework for Family Caregivers of Hospice Patients With Dementia

Understanding Hospital Admissions Close to the End of Life (ACE) Study

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