End of life care and the approach of death.
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Qurʾān
القرآن6 shownVerses named for this subject by hand come first. The rest are found by the subject’s own Arabic and English senses and are shown as lexical matches, not as anchors anyone has confirmed.
Qur'ān 2:180Arabic sense: الموت, الوصية, موت, وصيه
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
Qur'ān 5:106Arabic sense: الموت, الوصية, موت, وصيه
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.’
Qur'ān 21:35Arabic sense: الموت, موت | English sense: taste death
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
Qur'ān 29:57Arabic sense: الموت, موت | English sense: taste death
كُلُّ نَفۡسࣲ ذَآئِقَةُ ٱلۡمَوۡتِۖ ثُمَّ إِلَيۡنَا تُرۡجَعُونَ
Every soul will taste death, then it is to Us that you will be returned
Qur'ān 3:185Arabic sense: الموت, موت | English sense: taste death
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
Qur'ān 44:56Arabic sense: الموت, موت | English sense: taste death
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
Ḥadīth
الحديث6 shownSound 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).”
Research library, full list
776 to 800 of 969Intelligent assistive technology applications to dementia care: current capabilities, limitations, and future challenges.
The number of older Americans afflicted by Alzheimer disease and related dementias will triple to 13 million persons by 2050, thus greatly increasing healthcare needs. An approach to this emerging crisis is the development and deployment of intelligent assistive technologies that compensate for the specific physical and cognitive deficits of older adults with dementia, and thereby also reduce caregiver burden. The authors conducted an extensive search of the computer science, engineering, and medical databases to review intelligent cognitive devices, physiologic and environmental sensors, and advanced integrated sensor networks that may find future applications in dementia care. Review of the extant literature reveals an overwhelming focus on the physical disability of younger persons with typically nonprogressive anoxic and traumatic brain injuries, with few clinical studies specificall…
matched on Palliative Care (mesh)
What is important for patient centred care? A qualitative study about the perceptions of patients with cancer.
Background: This article deals with one of the themes from interviews in a larger qualitative study about cancer patients' perceptions of good caring. It is widely recognized today that patient centred care is important. Patients' values and perceptions must be acknowledged in order to make care evidence based and to meet the demands of quality improvement processes.
Aim: The aim was to get insight in patients with cancers' perceptions of the importance of being respected as partners and share control of decisions about interventions and management of their health problems and the reasons behind their wishes.
Method: Giorgio's scientific approach to phenomenology was used. Twenty cancer inpatients with various cancer diagnoses at different stages and with different prognoses were interviewed. The sampling was purposive.
Ethical issues: Permission to carry out the research was given by a …
matched on Palliative Care (mesh)
Communicating with children and families: from everyday interactions to skill in conveying distressing information.
Health care communication is a skill that is critical to safe and effective medical practice; it can and must be taught. Communication skill influences patient disclosure, treatment adherence and outcome, adaptation to illness, and bereavement. This article provides a review of the evidence regarding clinical communication in the pediatric setting, covering the spectrum from outpatient primary care consultation to death notification, and provides practical suggestions to improve communication with patients and families, enabling more effective, efficient, and empathic pediatric health care.
matched on Palliative Care (mesh)
Do children transcend death? An examination of the terror management function of offspring.
The concept of offspring provides a symbolic shield against the fear of death. The existential function of offspring was examined in two studies conducted in China employing real-life dependent measures. In Study 1, reminders of death through a word-completion task increased the disapproval of a birth-control policy in China. In Study 2, hospitalized patients generally preferred young family members more than other family members. Cancer patients showed this preference to a greater extent than non-cancer patients. Taken together, the findings showed that the death-anxiety-buffering function of offspring affects people's judgments and desires in real-life settings.
matched on Attitude to Death (mesh), Existentialism (mesh)
Receiving a diagnosis of inoperable lung cancer: patients' perspectives of how it affects their life situation and quality of life.
Lung cancer is a disease with many biomedical and psychological symptoms. The diagnosis and treatment of lung cancer induces adverse effects. Having an inoperable lung cancer there are few possibilities of being cured. Management of patients with inoperable disease is directed at relieving local or systemic symptoms. The purpose of this study is to describe how it affects the patients' life situation and quality of life. Data was collected by qualitative interviews where the patient's lived experiences were articulated. Twenty-three Swedish patients diagnosed and starting palliative treatment for inoperable lung cancer were interviewed. The interviews were audio-taped and transcribed verbatim. Data were interpreted trough interpretive phenomenology. Six themes were identified that were important for the informants' experience of their life situation and quality of life. The themes were: …
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"I will do it if it will help others:" motivations among patients taking part in qualitative studies in palliative care.
The aim of this study was to explore patients' and carers' preferences and expectations regarding their contribution to research in palliative care through the use of qualitative interviews. Data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. Both studies recorded the recruitment process, numbers of patients or carers accepting and declining, and the circumstances of interviews. Participants were asked about their motivation to participate in research. The data were analyzed by labeling patients' reflections on their motivations for participating in these studies and identifying themes. Analysis of the recruitment process revealed differential patterns in decline and acceptance of interviews by patients with different conditions and across settings. Among cancer patients, 21/51 declined; the proportion with other con…
matched on Palliative Care (mesh)
A matter of definition--key elements identified in a discourse analysis of definitions of palliative care.
For more than 30 years, the term "palliative care" has been used. From the outset, the term has undergone a series of transformations in its definitions and consequently in its tasks and goals. There remains a lack of consensus on a definition. The aim of this article is to analyse the definitions of palliative care in the specialist literature and to identify the key elements of palliative care using discourse analysis: a qualitative methodology. The literature search focused on definitions of the term 'palliative medicine' and 'palliative care' in the World Wide Web and medical reference books in English and German. A total of 37 English and 26 German definitions were identified and analysed. Our study confirmed the lack of a consistent meaning concerning the investigated terms, reflecting on-going discussion about the nature of the field among palliative care practitioners. Several co…
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Parent and child perspectives on physician communication in pediatric palliative care.
Objective: Despite growing recognition of the importance of communication with children with life-limiting illnesses and their families, there has been limited research that includes the child's perspective. The purpose of the current study was to identify the aspects of physician communication that children with life-limiting illnesses and their parents perceived to be facilitative or obstructive in pediatric palliative care.
Methods: This qualitative study reports on the first 20 parent and child pairs of pediatric oncology and cardiology patients (mean age 14.25 years, range 9-21 years) with a poor prognosis (physician reported likely < 20% chance of survival beyond 3 years) from two children's hospitals and one pediatric hospice in Los Angeles, California. Perspectives on physician communication were elicited from children's and parents' individual narratives, recorded, coded, and an…
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Determinants of neuropsychological and behavioural outcomes in early childhood survivors of congenital heart disease.
Aims: To evaluate the relative effect of cyanosis, surgical interventions and family processes on neuropsychological and behavioural outcomes in 4-year-old survivors of serious congenital heart disease (CHD).
Methods: 90 children with a range of cyanotic and acyanotic conditions, who underwent either corrective or palliative surgery, completed a neuropsychological and behavioural evaluation. Families of participants were also profiled by evaluation of maternal mental health, worry, social support, parenting style and family functioning.
Results: Compromised neuropsychological outcomes were associated with a combination of cyanotic conditions and open-heart surgery, but this was not exacerbated by having a complex, palliative, status. Both cyanotic and acyanotic conditions were associated with specific sensorimotor delays, regardless of method of the correction. Only children with complex…
matched on Palliative Care (mesh)
Is death really the worm at the core? Converging evidence that worldview threat increases death-thought accessibility.
According to terror management theory, if the cultural worldview protects people from thoughts about death, then weakening this structure should increase death-thought accessibility (DTA). Five studies tested this DTA hypothesis. Study 1 showed that threatening Canadian participants' cultural values (vs. those of another culture) increased DTA on a word-fragment completion task. Study 2 showed that when participants could dismiss the threat, DTA remained low. Study 3 replicated the results of Study 1, but DTA was measured using a lexical decision task. Response latencies to death, negative, and neutral content were measured. Worldview threat increased DTA relative to accessibility for negative and neutral content. Study 4 showed that the DTA effect emerged independently of the arousal of anger or anxiety. Finally, Study 5 demonstrated that participants with a pro-creation (vs. pro-evolut…
matched on Attitude to Death (mesh), Existentialism (mesh)
Proactive palliative care in the medical intensive care unit: effects on length of stay for selected high-risk patients.
Objective: The purpose of this study was to examine the effect of proactive palliative care consultation on length of stay for high-risk patients in the medical intensive care unit (MICU).
Design: A prospective pre/post nonequivalent control group design was used for this performance improvement study.
Setting: Seventeen-bed adult MICU.
Patients: Of admissions to the MICU, 191 patients were identified as having a serious illness and at high risk of dying: 65 patients in the usual care phase and 126 patients in the proactive palliative care phase. To be included in the sample, a patient had to meet one of the following criteria: a) intensive care admission following a current hospital stay of >or=10 days; b) age >80 yrs in the presence of two or more life-threatening comorbidities (e.g., end-stage renal disease, severe congestive heart failure); c) diagnosis of an active stage IV malignan…
matched on Palliative Care (mesh)
Long-term survival from gynecologic cancer: psychosocial outcomes, supportive care needs and positive outcomes.
Objectives: To assess the long-term psychosocial outcomes and supportive care needs of gynecologic cancer survivors.
Methods: Women who had received care in a tertiary-based gynecologic cancer center 1-8 years earlier and who were disease-free were invited to complete a mailed self-report questionnaire to assess psychosocial outcomes and supportive care needs.
Results: In total, 199 survivors participated in the study. Survivors reported normal quality of life and relationship adjustment although functioning was at the lower end of the range; over two-thirds (68%) reported positive outcomes. However, nearly one-third (29%) reported clinical levels of anxiety and the most frequently endorsed need concerned fear of disease recurrence (24%). About one-fifth (19%) reported symptoms that indicated posttraumatic stress disorder (PTSD) and this rose to close to one-third (29%) for survivors of …
matched on Palliative Care (mesh)
Spiritual pain among patients with advanced cancer in palliative care.
Background: The large body of empirical research suggesting that patients' spiritual and existential experiences influence the disease process has raised the need for health care professionals to understand the complexity of patients' spiritual pain and distress.
Objective: The current study explores the multidimensional nature of spiritual pain, in patients with end-stage cancer, in relation to physical pain, symptom severity, and emotional distress.
Design/measurements: The study combines a quantitative evaluation of participants' intensity of spiritual pain, physical pain, depression, and intensity of illness, with a qualitative focus on the nature of patients' spiritual pain and the kinds of interventions patients believed would ameliorate their spiritual pain.
Setting/subjects: Fifty-seven patients with advanced stage cancer in a palliative care hospital were interviewed by chaplain…
matched on Palliative Care (mesh)
Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback.
Objective: To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU).
Design: Use of an interdisciplinary iterative process to create a prototype "bundle" of indicators within previously established domains of ICU palliative care quality; operationalization of indicators as specified measures; and pilot implementation to evaluate feasibility and baseline ICU performance.
Setting: The national Transformation of the Intensive Care Unit program developed in the United States by VHA Inc.
Patients: Critically ill patients in ICUs for 1, > 3, and > 5 days.
Measurements and main results: Palliative care processes including identification of patient preferences and decision making surrogates, communication between clinicians and patients/families, social and spiritual support, and pain a…
matched on Palliative Care (mesh)
Symptom patterns of advanced cancer patients in a palliative care unit.
This study involved longitudinal evaluations of symptom severity and describes the symptom patterns of 77 terminal cancer patients (median age: 62 years; 61% female), selected from 537 consecutive patients admitted to the Palliative Care Unit of the National Taiwan University Hospital. The most common primary cancer sites in these patients were lung (23.4%), liver (15.6%), and stomach (13%). Nineteen physical and psychological symptoms were assessed using different scales. The median number of symptoms was 11 (range: 1-18) on admission, among which weakness, fatigue, anorexia, pain, and depression were the most common. A comparison of the initial symptom severity scores with those at one week after admission and two days before death suggested six symptom change patterns: A: continuous static (restless/heat, abdominal fullness, constipation, dizziness, and insomnia); B: static-increase (…
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Interval between palliative care referral and death among patients treated at a comprehensive cancer center.
In recent years, patients with advanced cancer are referred more frequently to palliative care programs. However, the referrals usually occur relatively late for the management of severe physical and psychological distress. The purpose of this retrospective study was to investigate the interval between palliative care referral and death in patients with advanced cancer. We reviewed charts of 240 consecutive patients with advanced cancer referred to the palliative care program at M.D. Anderson Cancer Center between September and December 2003. Demographics, as well as dates of cancer diagnosis, advanced disease diagnosis, palliative care referral, and death were determined. The median age was 61 years old, 173 were male, 304 patients had solid tumors, and 26 had hematologic malignancies. The median time intervals between the diagnosis of the primary cancer and death, diagnosis of advanced…
matched on Palliative Care (mesh)
Family Caregivers' Preparations for Death: A Qualitative Analysis.
Context: Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers' perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes.
Objectives: The objective was to explore family caregivers' preparations for death.
Methods: A total of 16 family caregivers of people in receipt of palliative care participated in semi-structured, face-to-face interviews. Transcripts were coded and analyzed using grounded theory techniques.
Results: Analysis yielded two overarching themes: Here and Now centered on the caregivers' focus on the multidimensional and all-consuming nature of caregiving for someone who is near death. Negotiating the H…
matched on Palliative Care (keyword), Terminally Ill (mesh)
Cultural adaptation of meaning-centered psychotherapy for latino families: a protocol.
Introduction: Literature suggests couple-based interventions that target quality of life and communication can lead to positive outcomes for patients with cancer and their partners. Nevertheless, to date, an intervention to address the needs of Latino families coping with advanced cancer has not been developed. Meta-analytic evidence suggests that culturally adapted evidenced-based intervention targeting a specific cultural group is four times more effective. Our goal is to culturally adapt a novel psychosocial intervention protocol entitled 'Caregivers-Patients Support to Latinx coping advanced-cancer' (CASA). We hypothesised that combine two evidence-based interventions and adapting them, we will sustain a sense of meaning and improving communication as patients approach the end of life among the patient-caregiver dyad.
Methods and analysis: To culturally adapt CASA, we will follow an …
matched on Palliative Care (keyword), end of life (text)
Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU.
Context: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved parents is largely unknown.
Objective: Explore associations between parental perceptions of infant symptoms and suffering at EOL in the neonatal intensive care unit (NICU) and parent adjustment following the death.
Methods: Retrospective, cross-sectional pilot study involving parents of infants who died within the previous five years in a large, Midwestern, level IV NICU. Parents were recruited through mailed invitations, and 40 mothers and 27 fathers participated from 40 families. Parents retrospectively reported on infant symptom burden and suffering during the last week of life and the Impact of Events Scale-Revised (IES-R), and …
matched on Palliative Care (keyword), end of life (text)
Senior H, Grant M, Rhee JJ, Aubin M, McVey P, Johnson C, Monterosso L, Nwachukwu H, Fallon-Ferguson J, Yates P, Williams B, Mitchell G (2019)MEDLINE-indexed journal, not yet read by usBMJ supportive & palliative care18 citations General practice physicians' and nurses' self-reported multidisciplinary end-of-life care: a systematic review.
Background: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide end-of-life care (EoLC) as the population ages. To enhance primary palliative care (PC), the care they provide needs to be understood to inform best practice models of care.
Objective: To provide a comprehensive description of the self-reported role and performance of GPs and GPNs in (1) specific medical/nursing roles, (2) communication, (3) care co-ordination, (4) access and out-of-hours care, and (5) multidisciplinary care.
Method: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
Results: From 6209 journal articles, 29 reviewed papers reported the GPs' and GPNs' role in EoLC or PC practice. GPs report a central role in symptom management, treatment withdrawal, non-malignant …
matched on Palliative Care (keyword), end of life (text)
Serious Illness Communication Practices in Glioblastoma: An Institutional Perspective.
Background: Early, high-quality advance care planning discussions are essential for supporting goal-concordant care among glioblastoma (GBM) patients. Objective: Using mixed methods, we sought to characterize current serious illness (SI) communication practices at our institution. Methods: The electronic medical records of 240 deceased GBM patients cared for at the Abramson Cancer Center in Philadelphia, PA between 2017 and 2019 were systematically reviewed for documented SI conversations about four domains: prognosis, goals, end-of-life planning, and code status. Patient outcomes and SI conversation characteristics were analyzed using descriptive statistics. Standardized interviews about GBM care were held with five clinicians. Interview transcripts were analyzed using grounded-theory coding to identify emergent themes. Results: Nearly all patients (96%) had at least one documented SI c…
matched on Advance Care Planning (mesh), end of life (text)
Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?
Background and aims: When a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers' choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this.
Methods: A cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ. We assessed how closely carers' choices resembled the PWD's preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted…
matched on Advance Care Planning (mesh), end of life (text)
Strategic targeting of advance care planning interventions: the Goldilocks phenomenon.
Strategically selecting patients for discussions and documentation about limiting life-sustaining treatments-choosing the right time along the end-of-life trajectory for such an intervention and identifying patients at high risk of facing end-of-life decisions-can have a profound impact on the value of advance care planning (ACP) efforts. Timing is important because the completion of an advance directive (AD) too far from or too close to the time of death can lead to end-of-life decisions that do not optimally reflect the patient's values, goals, and preferences: a poorly chosen target patient population that is unlikely to need an AD in the near future may lead to patients making unrealistic, hypothetical choices, while assessing preferences in the emergency department or hospital in the face of a calamity is notoriously inadequate. Because much of the currently studied ACP efforts have…
matched on Advance Care Planning (mesh), end of life (text)
Patient and caregiver congruence: the importance of dyads in heart failure care.
Background: Informal (family) caregivers are integrally involved in chronic heart failure (HF) care. Few studies have examined HF patients and their informal caregiver as a unit in a relationship, or a dyad. Dyad congruence, or consistency in perspective, is relevant to numerous aspects of living with HF and HF care. Incongruence or lack of communication could impair disease management and advance care planning.
Objectives: The purpose of this qualitative study was to examine for congruence and incongruence between HF patients and their informal (family) caregivers. Secondary analyses examined the relationship of congruence to emotional distress and whether dyad relationship characteristics (eg, parent-child vs spouse) were associated with congruence.
Methods: Thirty-four interviews consisting of HF patients and their current informal caregiver (N = 17 dyads) were conducted. Each dyad me…
matched on Advance Care Planning (mesh), end of life (text)
End-of-life planning in a family context: does relationship quality affect whether (and with whom) older adults plan?
Objectives: Medical professionals typically approach advance care planning (ACP) as an individual-level activity, yet family members also may play an integral role in making decisions about older adults' end-of-life care. We evaluate the effects of marital satisfaction and parent-child relationship quality on older adults' use of advance directives (i.e., living will and durable power of attorney for health care [DPAHC] appointments) and end-of-life discussions.
Methods: Using multinomial logistic regression models and data from a sample of 1,883 older adults in the Wisconsin Longitudinal Study, we estimated the effects of marital satisfaction, emotional support and criticism from children, other social support, demographic characteristics, and health on general ACP (i.e., advance directive only, discussions only, both, or neither) and specific DPAHC appointments.
Results: Parents with p…
matched on Advance Care Planning (mesh), end of life (text)