End of life care and the approach of death.
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كُتِبَ عَلَيۡكُمۡ إِذَا حَضَرَ أَحَدَكُمُ ٱلۡمَوۡتُ إِن تَرَكَ خَيۡرًا ٱلۡوَصِيَّةُ لِلۡوَٰلِدَيۡنِ وَٱلۡأَقۡرَبِينَ بِٱلۡمَعۡرُوفِۖ حَقًّا عَلَى ٱلۡمُتَّقِينَ
it is prescribed that he should make a proper bequest to parents and close relatives- a duty incumbent on those who are mindful of God
يَٰٓأَيُّهَا ٱلَّذِينَ ءَامَنُواْ شَهَٰدَةُ بَيۡنِكُمۡ إِذَا حَضَرَ أَحَدَكُمُ ٱلۡمَوۡتُ حِينَ ٱلۡوَصِيَّةِ ٱثۡنَانِ ذَوَا عَدۡلࣲ مِّنكُمۡ أَوۡ ءَاخَرَانِ مِنۡ غَيۡرِكُمۡ إِنۡ أَنتُمۡ ضَرَبۡتُمۡ فِي ٱلۡأَرۡضِ فَأَصَٰبَتۡكُم مُّصِيبَةُ ٱلۡمَوۡتِۚ تَحۡبِسُونَهُمَا مِنۢ بَعۡدِ ٱلصَّلَوٰةِ فَيُقۡسِمَانِ بِٱللَّهِ إِنِ ٱرۡتَبۡتُمۡ لَا نَشۡتَرِي بِهِۦ ثَمَنࣰ ا وَلَوۡ كَانَ ذَا قُرۡبَىٰ وَلَا نَكۡتُمُ شَهَٰدَةَ ٱللَّهِ إِنَّآ إِذࣰ ا لَّمِنَ ٱلۡأٓثِمِينَ
You who believe, when death approaches any of you, let two just men from among you act as witnesses to the making of a bequest, or two men from another people if you are journeying in the land when death approaches. Keep the two witnesses back after prayer, if you have any doubts, and make them both swear by God, ‘We will not sell our testimony for any price, even if a close relative is involved. We will not hide God’s testimony, for then we should be doing wrong.’
كُلُّ نَفۡسࣲ ذَآئِقَةُ ٱلۡمَوۡتِۗ وَنَبۡلُوكُم بِٱلشَّرِّ وَٱلۡخَيۡرِ فِتۡنَةࣰۖ وَإِلَيۡنَا تُرۡجَعُونَ
Every soul is certain to taste death: We test you all through the bad and the good, and to Us you will all return
كُلُّ نَفۡسࣲ ذَآئِقَةُ ٱلۡمَوۡتِۖ ثُمَّ إِلَيۡنَا تُرۡجَعُونَ
Every soul will taste death, then it is to Us that you will be returned
كُلُّ نَفۡسࣲ ذَآئِقَةُ ٱلۡمَوۡتِۗ وَإِنَّمَا تُوَفَّوۡنَ أُجُورَكُمۡ يَوۡمَ ٱلۡقِيَٰمَةِۖ فَمَن زُحۡزِحَ عَنِ ٱلنَّارِ وَأُدۡخِلَ ٱلۡجَنَّةَ فَقَدۡ فَازَۗ وَمَا ٱلۡحَيَوٰةُ ٱلدُّنۡيَآ إِلَّا مَتَٰعُ ٱلۡغُرُورِ
Every soul will taste death and you will be paid in full only on the Day of Resurrection. Whoever is kept away from the Fire and admitted to the Garden will have triumphed. The present world is only an illusory pleasure
لَا يَذُوقُونَ فِيهَا ٱلۡمَوۡتَ إِلَّا ٱلۡمَوۡتَةَ ٱلۡأُولَىٰۖ وَوَقَىٰهُمۡ عَذَابَ ٱلۡجَحِيمِ
After the one death they will taste death no more. God will guard them from the torment of Hell
Commentary on the verses above, at most two editions per verse.
It is written for you, when death is present for one of you and he is leaving behind some good, to make a will for parents and kinsfolk honorably, as something rightfully due from the godwary. The testament of the lords of wealth is one thing, and the testament of the lords of states is some- thing else. The testament of the lords of wealth goes out from the wealth, and the testament of the poor men from the states. At the end of their lives, the rich give out one-third of their wealth,13 and the poor give out limpidness of states and truthfulness of deeds. As much as the disobedient person is afraid for himself because of his bad deeds, the recogniz- er is afraid for himself ten times more because of the truthfulness of his deeds and the limpidness of his states. But there is a difference between the two: The disobedient person is afraid of the out- come and in dread of punishment, and
(O ye who believe! Let there be witnesses between you�) [5:106]. Abu Sa'id ibn Abi Bakr al-Razi informed us> Abu 'Amr ibn Hamdan> Abu Ya'la> al-Harith ibn Shurayh> Yahya ibn Zakariyya ibn Abi Za'idah> Muhammad ibn Abu'l-Qasim> 'Abd al-Malik ibn Sa'id ibn Jubayr> his father> Ibn 'Abbas who said: �Tamim al-Dari and 'Adiyy ibn Badda' used to come to Mecca. On one occasion, a man from Quraysh, from Banu Sahm, travelled with the two of them. However, this man died in a land where there was not a single Muslim and he had to entrust them with his belongings, with the understanding that they were to be given to his family. When the two of them arrived, they gave his belongings to his family but kept to themselves a silver bowl adorned with layers of gold. They denied having seen this bowl when they were asked about it. The two men were taken to the Prophet, Allah bless him and give him peace, wh
Prescribed made obligatory for you when any of you is approached by death that is by its causes and leaves behind some good material possessions is to make testament al-wasiyyatu is in the nominative because of kutiba and is semantically connected to the particle idhā ‘when’ if the latter is adverbial; but if this latter is conditional then it al-wasiyyatu indicates the response; the response to the conditional particle in ‘if’ is in other words implied to be fa’l-yūsi ‘let him make testament’; in favour of his parents and kinsmen honourably that is justly not giving more than the allotted share of a third nor preferring the richer person — an obligation haqqan here emphasises the import of what has preceded on those that fear God this verse has been abrogated by the ‘inheritance’ verse āyat al-mīrāth see Q. 411 and by the hadīth ‘Do not make testament for one already inheriting’ as repo
O you who believe let testimony between you when death that is one of its causes draws near to one of you at the time of a bequest be that of two men of justice among you ithnāni dhawā ‘adlin minkum ‘two men of justice among you’ is the predicate expressed with the sense of an imperative in other words ‘let two men bear witness … etc.’; the genitive annexation of shahāda ‘testimony’ and bayn ‘between’ is meant to allow for a range of alternatives; hīn ‘at the time of’ is a substitute for idhā ‘when’ or an adverbial qualifier of time for the verb hadara ‘draws near’; or of two others from another folk that is from other than your own religious community if you are travelling in the land and the affliction of death befalls you. Then you shall empanel them you shall detain them tahbisūnahumā ‘you shall empanel them’ is an adjectival qualification of ākharān ‘two others’ after the mid-aftern
We have not assigned everlastingness to any mortal before thee. If thou diest, will they be everlasting? Every soul shall taste death. When a speck of truthfulness appears in someone's heart, the reality of passion for death will show its head from his spirit, for the promise of encounter is there. What sort of spirit would forget the promise of encounter? What sort of heart would seek from someplace else the repose that comes only from contemplating the Real? “The person of faith has no ease without encoun- tering his Lord.” O dervish, no good fortune is more precious than death. Those who have the religion place the crown of magnificence and generosity on their heads at the gate of death. Those who reap the fruit of the Shariah will find the sigil of good fortune at the door of death. Death is the sanctuary of “There is no god but God.” Death is the doorstep of the kingdom of the resur
Every soul shall taste of death; you shall surely be paid in full your wages the requital of your deeds on the Day of Resurrection. Whoever is moved away distanced from the Fire and admitted to Paradise will have triumphed he will have attained his ultimate wish. Living in the life of this world is but the comfort of delusion; of inanity enjoyed for a little while then perishing.
Sound narrations only, and never matched by text. A narration appears here because a compiler filed it under a chapter this subject maps to, or because someone read it and anchored it. Each row says which.
حَدَّثَنِي عَبْدُ اللَّهِ بْنُ مُحَمَّدٍ، حَدَّثَنَا عَبْدُ الْمَلِكِ بْنُ عَمْرٍو، حَدَّثَنَا زُهَيْرُ بْنُ مُحَمَّدٍ، عَنْ مُحَمَّدِ بْنِ عَمْرِو بْنِ حَلْحَلَةَ، عَنْ عَطَاءِ بْنِ يَسَارٍ، عَنْ أَبِي سَعِيدٍ الْخُدْرِيِّ، وَعَنْ أَبِي هُرَيْرَةَ، عَنِ النَّبِيِّ صلى الله عليه وسلم قَالَ " مَا يُصِيبُ الْمُسْلِمَ مِنْ نَصَبٍ وَلاَ وَصَبٍ وَلاَ هَمٍّ وَلاَ حُزْنٍ وَلاَ أَذًى وَلاَ غَمٍّ حَتَّى الشَّوْكَةِ يُشَاكُهَا، إِلاَّ كَفَّرَ اللَّهُ بِهَا مِنْ خَطَايَاهُ ".
Narrated Abu Sa`id Al-Khudri and Abu Huraira:The Prophet (ﷺ) said, "No fatigue, nor disease, nor sorrow, nor sadness, nor hurt, nor distress befalls a Muslim, even if it were the prick he receives from a thorn, but that Allah expiates some of his sins for that
حَدَّثَنَا إِبْرَاهِيمُ بْنُ الْمُنْذِرِ، قَالَ حَدَّثَنِي مُحَمَّدُ بْنُ فُلَيْحٍ، قَالَ حَدَّثَنِي أَبِي، عَنْ هِلاَلِ بْنِ عَلِيٍّ، مِنْ بَنِي عَامِرِ بْنِ لُؤَىٍّ عَنْ عَطَاءِ بْنِ يَسَارٍ، عَنْ أَبِي هُرَيْرَةَ ـ رضى الله عنه ـ قَالَ قَالَ رَسُولُ اللَّهِ صلى الله عليه وسلم " مَثَلُ الْمُؤْمِنِ كَمَثَلِ الْخَامَةِ مِنَ الزَّرْعِ مِنْ حَيْثُ أَتَتْهَا الرِّيحُ كَفَأَتْهَا، فَإِذَا اعْتَدَلَتْ تَكَفَّأُ بِالْبَلاَءِ، وَالْفَاجِرُ كَالأَرْزَةِ صَمَّاءَ مُعْتَدِلَةً حَتَّى يَقْصِمَهَا اللَّهُ إِذَا شَاءَ ".
Narrated Abu Huraira:Allah's Messenger (ﷺ) said, "The example of a believer is that of a fresh tender plant; from whatever direction the wind comes, it bends it, but when the wind becomes quiet, it becomes straight again. Similarly, a believer is afflicted with calamities (but he remains patient till Allah removes his difficulties.) And an impious wicked person is like a pine tree which keeps hard and straight till Allah cuts (breaks) it down when He wishes." (See Hadith No. 558, Vol)
وَحَدَّثَنَاهُ قُتَيْبَةُ بْنُ سَعِيدٍ، حَدَّثَنَا عَبْدُ الْعَزِيزِ يَعْنِي الدَّرَاوَرْدِيَّ، ح وَحَدَّثَنَا أَبُو بَكْرِ بْنُ أَبِي شَيْبَةَ حَدَّثَنَا خَالِدُ بْنُ مَخْلَدٍ، حَدَّثَنَا سُلَيْمَانُ بْنُ بِلاَلٍ، جَمِيعًا بِهَذَا الإِسْنَادِ .
This hadith has been narrated by Sulaiman b. Bilal with the same chain of transmitters
وَحَدَّثَنَا أَبُو بَكْرٍ، وَعُثْمَانُ، ابْنَا أَبِي شَيْبَةَ ح وَحَدَّثَنِي عَمْرٌو النَّاقِدُ، قَالُوا جَمِيعًا حَدَّثَنَا أَبُو خَالِدٍ الأَحْمَرُ، عَنْ يَزِيدَ بْنِ كَيْسَانَ، عَنْ أَبِي حَازِمٍ، عَنْ أَبِي هُرَيْرَةَ، قَالَ قَالَ رَسُولُ اللَّهِ صلى الله عليه وسلم " لَقِّنُوا مَوْتَاكُمْ لاَ إِلَهَ إِلاَّ اللَّهُ " .
Abu Huraira reported Allah's Messenger (ﷺ) as saying:Exhort to recite" There is no god but Allah" to those of you who are dying
حَدَّثَنَا أَبُو بِشْرٍ، بَكْرُ بْنُ خَلَفٍ وَمُحَمَّدُ بْنُ بَشَّارٍ قَالاَ حَدَّثَنَا يَحْيَى بْنُ سَعِيدٍ، حَدَّثَنَا عَبْدُ الْحَمِيدِ بْنُ جَعْفَرٍ، عَنْ أَبِيهِ، عَنْ حَكِيمِ بْنِ أَفْلَحَ، عَنْ أَبِي مَسْعُودٍ، عَنِ النَّبِيِّ ـ صلى الله عليه وسلم ـ قَالَ " لِلْمُسْلِمِ عَلَى الْمُسْلِمِ أَرْبَعُ خِلاَلٍ يُشَمِّتُهُ إِذَا عَطَسَ وَيُجِيبُهُ إِذَا دَعَاهُ وَيَشْهَدُهُ إِذَا مَاتَ وَيَعُودُهُ إِذَا مَرِضَ " .
It was narrated from Abu Mas’ud that the Prophet (ﷺ) said:“The Muslim has four things due from the Muslim: He should answer [by saying Yarhamuk-Allah (may Allah have mercy on you)] to him if he sneezes (and says Al-Hamdulillah); he should accept his invitation if he invites him; he should attend his funeral if he dies; and he should visit him if he falls sick.”
حَدَّثَنَا أَبُو بَكْرِ بْنُ أَبِي شَيْبَةَ، حَدَّثَنَا مُحَمَّدُ بْنُ بِشْرٍ، عَنْ مُحَمَّدِ بْنِ عَمْرٍو، عَنْ أَبِي سَلَمَةَ، عَنْ أَبِي هُرَيْرَةَ، قَالَ قَالَ رَسُولُ اللَّهِ ـ صلى الله عليه وسلم ـ " خَمْسٌ مِنْ حَقِّ الْمُسْلِمِ عَلَى الْمُسْلِمِ رَدُّ التَّحِيَّةِ وَإِجَابَةُ الدَّعْوَةِ وَشُهُودُ الْجِنَازَةِ وَعِيَادَةُ الْمَرِيضِ وَتَشْمِيتُ الْعَاطِسِ إِذَا حَمِدَ اللَّهَ " .
It was narrated from Abu Hurairah that the Messenger of Allah (ﷺ) said:“Five are the rights of the Muslim: Returning his greeting, accepting his invitation; attending his funeral; visiting the sick; and answering (saying Yarhamuk-Allah) to the one who sneezes, if he praises Allah (says Al-Hamdu Lillah).”
Arabic originals, reached through the subject’s Arabic senses. Interpretive sources, never proof of a ruling.
الباب الثالث في سكرات الموت وشدته وما يستحب من الأحوال عند الموت
| الباب الثالث في سكرات الموت وشدته وما يستحب من الأحوال عنده
ومن أقسام الخائفين، من يخاف سكرات الموت وشدته، أو سؤال منكر ونكير، أو عذاب القبر.
فهذه سكرات الموت على أولياء الله وأحبابه في حالنا ونحن المنهمكون في المعاصي وتتوالى علينا مع سكرات الموت بقية الدواهي فإن دواهي الموت ثلاث
قد عرفت فيما سبق أحوال الميت فى سكرات الموت وخطره فى خوف العاقبة ثم مقاساته لظلمة القبر وديدانه ثم لمنكر ونكير وسؤالهما ثم لعذاب القبر وخطره إن كان مغضوبا عليه
إحداهما أعظم، وهو أن يغلب على القلب والعياذ بالله شك، أو جحود عند سكرات الموت وأهواله، فيقتضي ذلك العذاب الدائم.
Peer-reviewed work held with its DOI and abstract, labelled with the study design its publication types report. None of it has been read or assessed, so nothing here may be cited as showing anything. Retracted work is held for the record but never listed; a review that a later version replaced is listed under its replacement and marked.
Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature.: Objectives: Published research in disparities in advance care planning, palliative, and end-of-life care is limited. However, available data points to significant barriers to palliative and end-of-life care among minority adults. The main objective of this scoping review was to summarize the current published research and literature on disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanc Blacks. Methods: The scoping review method was
Good end-of-life care in nursing home according to the family carers' perspective: A systematic review of qualitative findings.: Background: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. Aim: To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective. Design: Systematic review (PROSPERO no. 95581) with meta-aggregation method. Data sources: Five electronic databas
Defining priorities for improving end-of-life care in Canada.: Background: High-quality end-of-life care should be the right of every Canadian. The objective of this study was to identify aspects of end-of-life care that are high in priority as targets for improvement using feedback elicited from patients and their families. Methods: We conducted a multicentre, cross-sectional survey involving patients with advanced, life-limiting illnesses and their family caregivers. We administered the Canadian Health Care Evaluation Project (CANHELP) questionnaire along
Advance Care Planning, Palliative Care, and End-of-life Care Interventions for Racial and Ethnic Underrepresented Groups: A Systematic Review.: Context: Persons from underrepresented racial and ethnic groups experience disparities in access to and quality of palliative and end-of-life care. Objectives: To summarize and evaluate existing palliative and end-of-life care interventions that aim to improve outcomes for racial and ethnic underrepresented populations in the United States. Methods: We conducted a systematic review of the literature in the English language from four databases through January 2020. Peer-reviewed studies that impl
Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life.: Importance: Previous studies report associations between medical utilization at the end-of-life (EoL) and religious coping and spiritual support from the medical team. However, the influence of clergy and religious communities on EoL outcomes is unclear. Objective: To determine whether spiritual support from religious communities influences terminally ill patients' medical care and quality of life (QoL) near death. Design, setting, and participants: A US-based, multisite cohort study of 343 pati
Death anxiety interventions in patients with advanced cancer: A systematic review.: Background: Death anxiety is a common issue in adult patients with advanced cancer and can have a large impact on quality of life and end-of-life care. Interventions are available to assist but are scarcely used in everyday practice. Aim: To assess quantitative studies on interventions for adult patients with advanced cancer suffering from death anxiety. Data sources: MEDLINE, PsycINFO, Embase and CINAHL were searched to identify quantitative or mixed studies on death anxiety or relatable existe
Control in patients with advanced cancer: an interpretative phenomenological study.
Background: In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about the meaning of control from the patients' perspectives. Thus, the aim of this study was to explore how patients with advanced cancer understand control, in terms of underlying beliefs, attitudes, and expectations consistent with self-efficacy, in different dimensions of their life, their illness, and their healthcare. Methods: We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were recruited. The inclusion criteria were a) ≥ 18 years old; b) fluency in Spanish or Cata…
matched on Palliative Care (mesh), Palliative Care (keyword)
An EAPC white paper on multi-disciplinary education for spiritual care in palliative care.
Background: The EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups. Methods: Early in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and repres…
matched on Palliative Care (mesh), Palliative Care (keyword)
Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach.
Background: Parkinson's disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. Methods: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson's Disease…
matched on Palliative Care (mesh), Palliative Care (keyword)
Role of clinical psychology in UK hospices.
Objective: The National Institute of Clinical Excellence (NICE) (2004) guidance recommends a tiered approach to psychological care within cancer care. This includes the provision of Clinical Psychologists to support other professionals to deliver high-quality psychological care at levels 1 and 2 and to provide direct input to patients experiencing high levels of distress at level 4. However, little is known about the role of Clinical Psychology within UK Hospices currently. A survey of Clinical Psychologists working in this area was undertaken to address this gap in knowledge. Methods: We conducted an anonymous online survey of Clinical Psychologists working in Hospice organisations across the UK. Recruitment was completed via professional networking groups, social media and by contacting UK Hospice organisations. The survey included quantitative and qualitative items about professionals…
matched on Hospice Care (mesh), Hospice Care (keyword)
The Urgency of Spiritual Care: COVID-19 and the Critical Need for Whole-Person Palliation.
The coronavirus disease 2019 (COVID-19) crisis has amplified the importance of palliative care to countless patients suffering with and dying from this disease, as well as to their families, communities, and the worldwide cadre of overburdened health care workers. Particularly urgent is the need for spiritual care specialists and generalists to address spiritual suffering given the degree of isolation, loneliness, and vulnerability caused by this pandemic. Although spiritual care has long been recognized as one of the domains of quality palliative care, it is often not fully integrated into practice. All disciplines are ultimately responsible for ensuring that spiritual care is prioritized to improve quality of life and the experience of patients and families facing spiritual emergencies amid the complex life-and-death scenarios inherent to coronavirus disease 2019. Although the pandemic…
matched on Palliative Care (mesh), Palliative Care (keyword)
Sleep problems in advanced disease .
Sleep problems are relatively common in patients with advanced disease, and are associated with significant morbidity in these groups of patients. The focus of this article is sleep problems in patients with advanced cancer, and specifically insomnia, 'vivid' dreams and nightmares. However, other sleep problems are also relatively common in this group of patients, including sleep-related breathing disorders and circadian rhythm sleep-wake disorders. Healthcare professionals should screen all patients with advanced diseases for sleep problems and, equally, initiate appropriate (evidence-based) interventions when they are discovered.
matched on Palliative Care (mesh), Palliative Care (keyword)
The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach.
Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it. Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks. Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model. Setting/participants: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer. Results: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' convi…
matched on Palliative Care (mesh), Palliative Care (keyword)
Long-term prevalence and predictors of prolonged grief disorder amongst bereaved cancer caregivers: A cohort study.
Context: The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated. Objectives: The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers. Methods: A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychologica…
matched on Hospice Care (mesh), Palliative Care (keyword)
Level of Burden and Health-Related Quality of Life in Caregivers of Palliative Care Patients.
The complexity of palliative care means that the emotional distress and burden that primary family caregivers suffer under can be particularly high. The objective of this study was to determine the level of burden endured by these primary family caregivers and to identify the variables that predict it in the caregiving relatives of people who require home-based palliative care. A descriptive-correlational cross-sectional study was conducted. Socio-demographic and clinical data were collected from caregivers through a self-administered questionnaire that included questions from the 12-Item Short Form Health Survey (SF-12), Zarit Caregiver Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Brief Resilient Coping Scale (BRCS), Post Traumatic Growth Inventory (PTGI), and Fatigue Assessment Scale (FAS). A total of 77 caregivers participated; 66.2% were women, and the mean a…
matched on Palliative Care (mesh), Palliative Care (keyword)
Emotional disclosure as a therapeutic intervention in palliative care: a scoping review protocol.
Introduction: Emotional disclosure (ED) is a term used to describe the therapeutic expression of emotion. ED underlies a variety of therapies aimed at improving well-being for various populations, including people with palliative-stage disease and their family carers. Systematic reviews of ED-based psychotherapy have largely focused on expressive writing as a way of generating ED. However, heterogeneity in intervention format and outcome measures has made it difficult to analyse efficacy. There is also debate about the mechanisms proposed to explain the potential effects of ED.We present a scoping review protocol to develop a taxonomy of ED-based interventions to identify and categorise the spectrum of interventions that could be classified under the umbrella term of 'emotional disclosure' in the palliative care setting. By mapping these to associated treatment objectives, outcome measur…
matched on Palliative Care (mesh), Palliative Care (keyword)
Simulation-Based Palliative Care Communication for Pediatric Critical Care Fellows.
Background: Pediatric palliative care (PPC) education is lacking in pediatric critical care medicine (PCCM) fellowships, despite the desire of many program directors and fellows to expand difficult conversation training. Simulation-based training is an experiential method for practicing challenging communication skills such as breaking bad news, disclosing medical errors, navigating goals of care, and supporting medical decision-making. Methods: We describe a simulation-based PPC communication series for PCCM fellows, including presimulation session, simulation session, debriefing, and evaluation methods. From 2011 to 2017, 28 PCCM fellows participated in a biannual half-day simulation session. Each session included 3 scenarios (allowing for participation in up to 18 scenarios over 3 years). Standardized patients portrayed the child's mother. PCCM and interprofessional PPC faculty cofaci…
matched on Palliative Care (mesh), Palliative Care (keyword)
Bereavement support standards and bereavement care pathway for quality palliative care.
ABSTRACTObjective:Provision of bereavement support is an essential component of palliative care service delivery. While bereavement support is integral to palliative care, it is typically insufficiently resourced, under-researched, and not systematically applied. Our aim was to develop bereavement standards to assist palliative care services to provide targeted support to family caregivers. Method: We employed a multiple-methods design for our study, which included: (1) a literature review, (2) a survey of palliative care service providers in Australia, (3) interviews with national (Australian) and international experts, (4) key stakeholder workshops, and (5) a modified Delphi-type survey. Results: A total of 10 standards were developed along with a pragmatic care pathway to assist palliative care services with implementation of the standards. Significance of results: The bereavement sta…
matched on Palliative Care (mesh), Palliative Care (keyword)
Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making.
Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communi…
matched on Palliative Care (mesh), Palliative Care (keyword)
Family members' experiences of integrated palliative advanced home and heart failure care: A qualitative study of the PREFER intervention.
ABSTRACTObjective:Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care. Method: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for …
matched on Palliative Care (mesh), Palliative Care (keyword)
Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients.
Background: This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. Methods: During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. Results: FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for "bodily pain"…
matched on Palliative Care (mesh), Palliative Care (keyword)
What Impact Do Chaplains Have? A Pilot Study of Spiritual AIM for Advanced Cancer Patients in Outpatient Palliative Care.
Context: Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains' work in palliative care are scarce. Objectives: The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model ("Spiritual AIM"), and to gather pilot data on Spiritual AIM's effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. Methods: Patients with advanced cancer (N = 31) who were receiving outpatient palliative care were assigned based on chaplains' and patients' outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, con…
matched on Palliative Care (mesh), Palliative Care (keyword)
Helping palliative care healthcare professionals get the most out of mentoring in a low-income country: a qualitative study.
Background: Being a mentor in any setting brings challenges in addition to recognised benefits. Working in a low-income country confers specific challenges including logistical and communication issues. The need to adequately support UK-based international health volunteers prior to, during and after their trip is recognised at government level. Whilst the need to support mentors is recognised little is known about their support needs. This study aims to explore the lived experience of mentorship in a low-income country and gain insight into mentors' support and information needs and the barriers and facilitators to mentoring. Methods: Purposive sampling was used to recruit UK-employed, palliative care clinicians: four consultants, two specialty trainees, and two nurses, who were mentors with an international palliative care project. Semi-structured telephone interviews were recorded and…
matched on Palliative Care (mesh), Palliative Care (keyword)
Patients' experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study.
Purpose: Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients' perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer. Methods: Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically. Results: Six major themes were identified: imminence of death a…
matched on Palliative Care (mesh), Palliative Care (keyword)
What do I do? Developing a taxonomy of chaplaincy activities and interventions for spiritual care in intensive care unit palliative care.
Background: Chaplains are increasingly seen as key members of interdisciplinary palliative care teams, yet the specific interventions and hoped for outcomes of their work are poorly understood. This project served to develop a standard terminology inventory for the chaplaincy field, to be called the chaplaincy taxonomy. Methods: The research team used a mixed methods approach to generate, evaluate and validate items for the taxonomy. We conducted a literature review, retrospective chart review, focus groups, self-observation, experience sampling, concept mapping, and reliability testing. Chaplaincy activities focused primarily on palliative care in an intensive care unit setting in order to capture a broad cross section of chaplaincy activities. Results: Literature and chart review resulted in 438 taxonomy items for testing. Chaplain focus groups generated an additional 100 items and rem…
matched on Palliative Care (mesh), Palliative Care (keyword)
Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer.
Background: Family caregivers (FCGs) experience significant deteriorations in quality of life while caring for patients with lung cancer. In this study, the authors tested the effectiveness of an interdisciplinary palliative care intervention for FCGs of patients diagnosed with stage I through IV nonsmall cell lung cancer. Methods: FCGs who were identified by patients as their primary caregivers were enrolled in a prospective, quasi-experimental study in which the usual care group was accrued first followed by the intervention group. FCGs in the intervention group were presented at interdisciplinary care meetings, and they also received 4 educational sessions organized in the physical, psychological, social, and spiritual domains. The sessions included self-care plans to support the FCG's own needs. Caregiver burden, caregiving skills preparedness, psychological distress, and FCG quality…
matched on Palliative Care (mesh), Palliative Care (keyword)
Spiritual needs and spiritual support preferences of people with end-stage heart failure and their carers: implications for nurse managers.
Background: Spiritual care is an important element of holistic care but has received little attention within palliative care in end-stage heart failure. Aims: To identify the spiritual needs and spiritual support preferences of end-stage heart failure patients/carers and to develop spiritual support guidelines locally. Method: Semi-structured interviews (totalling 47) at 3-monthly intervals up to 1 year with 16 end-stage heart failure patients/carers. Focus group/consultation with stakeholders. Results: Participants were struggling with spiritual/existential concerns alongside the physical and emotional challenges of their illness. These related to: love/belonging; hope; coping; meaning/purpose; faith/belief; and the future. As a patient's condition deteriorated, the emphasis shifted from 'fighting' the illness to making the most of the time left. Spiritual concerns could have been addre…
matched on Terminal Care (mesh), Palliative Care (keyword)
Interdisciplinary Palliative Care for Patients With Lung Cancer.
Context: Palliative care, including symptom management and attention to quality of life (QOL) concerns, should be addressed throughout the trajectory of a serious illness such as lung cancer. Objectives: This study tested the effectiveness of an interdisciplinary palliative care intervention for patients with Stage I-IV non-small cell lung cancer (NSCLC). Methods: Patients undergoing treatments for NSCLC were enrolled in a prospective, quasi-experimental study whereby the usual care group was accrued first followed by the intervention group. Patients in the intervention group were presented at interdisciplinary care meetings, and appropriate supportive care referrals were made. They also received four educational sessions. In both groups, QOL, symptoms, and psychological distress were assessed at baseline and 12 weeks using surveys which included the Functional Assessment of Cancer Thera…
matched on Palliative Care (mesh), Palliative Care (keyword)
Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: a longitudinal study.
Context: Family carers of palliative care patients report high levels of psychological distress throughout the caregiving phase and during bereavement. Palliative care providers are required to provide psychosocial support to family carers; however, determining which carers are more likely to develop prolonged grief (PG) is currently unclear. Objectives: To ascertain whether family carers reporting high levels of PG symptoms and those who develop PG disorder (PGD) by six and 13 months postdeath can be predicted from predeath information. Methods: A longitudinal study of 301 carers of patients receiving palliative care was conducted across three palliative care services. Data were collected on entry to palliative care (T1) on a variety of sociodemographic variables, carer-related factors, and psychological distress measures. The measures of psychological distress were then readministered …
matched on Palliative Care (mesh), Palliative Care (keyword)
A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study.
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and rela…
matched on Palliative Care (mesh), Palliative Care (keyword)
White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.
Background: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. Aim: To define optimal palliative care in dementia. Methods: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. Results: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, …
matched on Palliative Care (mesh), Palliative Care (keyword)
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