Management of the actively dying patient

2021 ◽  
pp. 1104-1118
Author(s):  
Judith Lacey ◽  
Nathan I. Cherny
Keyword(s):  
Palliative Care ◽  
Life Cycle ◽  
End Of Life ◽  
Multidisciplinary Approach ◽  
Human Life ◽  
Family Members ◽  
Terminal Phase ◽  
Dying Patient ◽  
Care Of The Dying

Few issues so encapsulate the palliative care as the skilled care of the dying patient and their family members. How patients die is a matter of supreme consequence in the human life cycle and for the surviving family. This chapter presents a multidisciplinary approach to highlighting challenges in identifying the terminal phase, approaches to help the clinician address the needs of patients and their family members, the management of common symptoms at the end of life including the management of refectory symptoms at the end of life. Tabulated information highlights some of the special issues including practical ways family members can participle in the care of their loved ones. The chapter concludes with some of the challenging issues related to hydration and nutrition, difficult deaths and staff coping and support.

Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

2019 ◽  
Vol 28 (3) ◽  
pp. 1356-1362
Author(s):  
Laurence Tan Lean Chin ◽  
Yu Jun Lim ◽  
Wan Ling Choo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Multidisciplinary Team ◽  
Biopsychosocial Model ◽  
Family Members ◽  
Clinical Decisions ◽  
Goals Of Care ◽  
Complex Needs ◽  
Aspiration Risk ◽  
Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

scholarly journals Effects of dignity therapy on palliative patients’ family members: A systematic review

2021 ◽  
pp. 1-10
Author(s):  
Leonor Grijó ◽  
Carolina Tojal ◽  
Francisca Rego
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Meaning In Life ◽  
Family Members ◽  
Cochrane Library ◽  
Publication Date ◽  
Dignity Therapy ◽  
Bibliographic Search ◽  
Palliative Patients

Abstract Objective Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients’ family members. Method In June 2020, a bibliographic search was performed using the terms “Dignity Therapy” and “Palliative Care” in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date. Results Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment. Significance of results There is evidence of the benefits of DT for palliative patients’ family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

Palliative care in the intensive cardiac care unit

2015 ◽  
Author(s):  
Jayne Wood ◽  
Maureen Carruthers
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Symptom Control ◽  
World Health ◽  
Terminal Phase ◽  
Cardiac Care ◽  
Life Care ◽  
Specialist Palliative Care ◽  
Cardiac Care Unit

Specialist palliative care services originally focused on improving the quality of life for patients with a diagnosis of cancer in the terminal phase of their illness. However, organizations, such as the World Health Organization, supported by recent national strategies, such as the End of Life Care Strategy (United Kingdom, 2008), promote the early integration of specialist palliative care into the management of patients with incurable disease, irrespective of the diagnosis. The primary goal of the intensive cardiac care unit is to help patients survive acute threats to their lives. However, the suddenness and severity of illness, particularly when associated with an underlying cardiological diagnosis, often means that the provision of optimal specialist palliative care is challenging. This chapter addresses key issues relating to the provision of specialist palliative care in the challenging and complex environment of the intensive cardiac care unit, including symptom control, end of life care, decision making, and communication. The benefits of multidisciplinary working for effective quality improvement in patient care and best support for patients, families/carers, and staff are also addressed. The importance of interdisciplinary working is highlighted, and, by embedding the principles of holistic care into daily practice, the intensive cardiac care unit can ensure that patients and their families/carers receive the support they need in a timely manner from individuals who are well supported in what is often considered to be one of the most challenging medical environments.

The influence of care place and diagnosis on care communication at the end of life: bereaved family members’ perspective

2021 ◽  
pp. 1-8
Author(s):  
Anna O'Sullivan ◽  
Anette Alvariza ◽  
Joakim Öhlén ◽  
Cecilia Larsdotter ex. Håkanson
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Nursing Home ◽  
End Of Life ◽  
Family Members ◽  
Palliative Care Unit ◽  
Deceased Person ◽  
Specialized Palliative Care ◽  
Bereaved Family ◽  
At Home

Abstract Objective To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective. Method A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim. Results Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40). Significance of results This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Therapy-related issues: palliative care

2017 ◽  
Author(s):  
Philip Wiffen ◽  
Marc Mitchell ◽  
Melanie Snelling ◽  
Nicola Stoner
Keyword(s):  
Spinal Cord ◽  
Palliative Care ◽  
End Of Life ◽  
Bowel Obstruction ◽  
End Of Life Care ◽  
Cord Compression ◽  
Life Care ◽  
Malignant Bowel Obstruction ◽  
Mouth Care ◽  
Dying Patient

This chapter covers important information for the pharmacist relating to palliative care. Conditions commonly seen when caring for patients at the end of life are covered, including anorexia, fatigue, and anaemia. Other topics include hypercalcaemia of malignancy, mouth care, noisy breathing, insomnia, spinal cord compression, and malignant bowel obstruction. In addition, this chapter includes detail on the priorities for end-of-life care, relating these to prescribing in the dying patient.

J-HOPE study: Evaluation of end-of-life cancer care in Japan from the perspective of bereaved family members

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9577-9577
Author(s):  
M. Miyashita ◽  
T. Morita ◽  
K. Sato ◽  
S. Tsuneto ◽  
Y. Shima
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Institutional Review Boards ◽  
Life Care ◽  
Knowledge And Skills ◽  
Bereaved Family ◽  
Care Evaluation

9577 Background: The Japan Hospice and Palliative Care Evaluation (J-HOPE) study was conducted in 2007 and 2008. The aim of the study was to evaluate the quality of end-of-life care at regional cancer centers (CCs), inpatient palliative care units (PCUs), and home hospices (HHs) in Japan from the perspective of bereaved family members. Methods: A nationwide cross-sectional mail survey was conducted in 2007 and 2008. The survey was sent to bereaved families 6–18 months after the death of a patient at 56 CCs, 100 PCUs, or 14 HHs. Outcome measures were the good death inventory, the care evaluation scale, and overall satisfaction with care. The protocol of this study was approved by the institutional review boards of each participating institution. Results: Of the 13,181 bereaved family members that received the survey, 8,163 (62%) participants returned their responses. Among bereaved family members, significantly fewer responded that patients were free from physical distress at CCs (50%) than PCUs (80%) and HHs (73%) (P<0.0001). Significantly fewer patients trusted the physicians at CCs (79%) when compared with PCUs (83%) and HHs (88%) (P<0.0001). Significantly fewer patients were valued as people at CCs (83%) than PCUs (93%) and HHs (95%) (P<0.0001). In addition, significantly fewer participants felt physicians should have worked to improve the patients' symptoms more quickly at CCs (55%) when compared with PCUs (78%) and HHs (77%) (P<0.0001). Significantly fewer participants felt nurse should improve their knowledge and skills regarding end-of-life care at CCs (51%) when compared with PCUs (76%) and HHs (78%) (P<0.0001). A total of 51% of participants reported that nurses should improve their knowledge and skills regarding end-of-life care. Finally, significantly fewer participants were satisfied with the end-of-life care provided by CCs (80%) when compared with PCUs (93%) and HHs (94%) (P<0.0001). Conclusions: Overall, the bereaved family members appreciated the end-of-life care provided by CCs, PCUs, and HHs in Japan. However, in some situations, the quality of end-of-life care provided by CCs was lower than that provided by PCUs and HHs. No significant financial relationships to disclose.

Care of the Dying Patient

2019 ◽  
pp. 62-75 ◽  
Author(s):  
Megan Doherty ◽  
Joshua Hauser
Keyword(s):  
Palliative Care ◽  
Physical Symptoms ◽  
Spiritual Support ◽  
Dying Patient ◽  
Care Of The Dying

This chapter addresses the management of children and adults who are in the last hours or days of life, by providing details on the management of pain and other physical symptoms as well as suggestions for how to ensure psychosocial and spiritual support for the patient and their family. Providing palliative care during this time will not hasten death but is essential to ensure comfort and dignity for the patient. In the last hours and days of life, pain and other symptoms can be challenging to control. They may require frequent reassessment and rapidly escalating doses of medications.

Pathways for a ‘Good Death’: Understanding End-of-Life Practices Through An Ethnographic Study in Two Portuguese Palliative Care Units

2020 ◽  
pp. 136078042097272
Author(s):  
Ana Patrícia Hilário ◽  
Fábio Rafael Augusto
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
Participant Observation ◽  
Family Members ◽  
Well Being ◽  
Physical Symptoms ◽  
Ethnographic Study ◽  
Good Death ◽  
Palliative Care Units

Drawing upon ethnographic research developed in two Portuguese palliative care units, this article seeks to analyse end-of-life practices, namely how they are perceived and negotiated among the various actors involved. Over a period of 10 months in these units participant observation and in-depth interviews were conducted with 20 family members of patients with a life-threatening illness and 20 health care professionals. Against this backdrop, aspects related to the concept of a ‘good death’, the management of pain and suffering, and the loss of consciousness were explored. The main findings pointed to an appreciation, both by professionals and family members, of an holistic intervention that guarantees the patient’s physical, psychological, social, and spiritual well-being, where the relief of physical symptoms is of particular importance and palliative sedation emerges as a mechanism that allows the patient to achieve a ‘good death’ (without suffering and in a peaceful way).

Dame Cicely Saunders Om DBE: Founder of the Hospice System

2009 ◽  
Vol 19 (7) ◽  
pp. 228-229
Author(s):  
Harold Ellis
Keyword(s):  
Palliative Care ◽  
General Practitioners ◽  
Family Members ◽  
Home Visits ◽  
Medical Ward ◽  
Dying Patients ◽  
The Family ◽  
District Nurses ◽  
Dying Patient ◽  
Narcotic Drugs

Sixty years ago, when I was a young house-surgeon at the old Radcliffe Infirmary in Oxford, we were not at all expert at dealing with our dying patients. Of course, we had every pity and sympathy with them and their families, but we were often constrained by the family members themselves from talking frankly to the patient, and our use of pain-relieving drugs: morphine, heroin and the Brompton mixture, was not very scientific. We were warned of the danger of the patient becoming rapidly tolerant to increasing doses of narcotic drugs. Although devoted general practitioners and district nurses would make frequent home visits to their terminal patients, designated hospices hardly existed and much of the care fell onto the shoulders of the family. Often, a dying patient, carefully hidden behind the screens, would be found at the far end of the surgical or medical ward. The revolution in palliative care that we see today owes itself to one remarkable person - Cicely Mary Saunders.

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