Palliative care for all ….. Really?

Difficult Road

I have a friend, who, alongside her family, struggled with her father’s illness for over two years. He travelled a slow and difficult road towards the end of his life. He was diagnosed with a chronic respiratory illness a few years ago, with a life expectancy of six months. The mainstay of their support was the family GP and infrequent visits to the Consultant. When palliative care was suggested by a friend, as a support, their response was ‘but he hasn’t got cancer’. After a little encouragement and a speedy referral, the local community palliative care team came into their home and he and his family’s journey became a more peaceful and managed one. Their journey was transformed, not because palliative care services altered his diagnosis in any way, but because they supported the patient and his family in dealing with the present and immediate future. Palliative care services assisted ...

Palliative Care Work, Between Death and Discharge

Journal of Palliative Care ◽

10.1177/082585970502100205 ◽

2005 ◽

Vol 21 (2) ◽

pp. 97-102 ◽

Cited By ~ 4

Author(s):

Margaret O'Connor ◽

Louise Peters ◽

Susan Lee ◽

Cecilia Webster

Keyword(s):

Palliative Care ◽

Turnover Time ◽

Her Family ◽

Care Services ◽

The Family ◽

Time Required ◽

Death Care

This paper discusses a small study that was undertaken in a palliative care unit (PCU) to demonstrate reasons for the lengthy patient turnover time after the death of a patient. The study arose from a managerial challenge about the PCU's efficiency in comparison to other settings of care. While Palliative care services in Australia are loosely funded on a per diem rate, casemix funding models for inpatient services in other settings reward efficiency in terms of length of stay (1). The aim of the study was to undertake a post-death survey, from the nursing perspective, of activities and the time required to deliver follow-up care, as required, to the deceased patient and his/her family. Details of the post-death episode for all patients who died in the PCU over two time periods were collected using a newly designed tool. This paper does not argue for the incorporation of post-death nursing work as a measure of efficiency or quality; rather, it is a demonstration of the type of work and the time involved in carrying out post-death work. This nursing work is an essential but hidden and generally unacknowledged element of palliative care and, not surprisingly, there is a dearth of literature describing the role of the nurse in providing care of the family and others after the patient has died. This project has provided important information about the factors that Protract after-death care, and gives some insight into the role of the nurse after a death occurs in a PCU.

Palliative Care in the Perinatal Setting

Oxford Textbook of Palliative Nursing ◽

10.1093/med/9780190862374.003.0062 ◽

2019 ◽

pp. 749-757

Author(s):

Cheryl Ann Thaxton ◽

Diana Jacobson ◽

Heather Murphy ◽

Tracey Whitley

Keyword(s):

Palliative Care ◽

Neonatal Intensive Care ◽

Psychological Symptom ◽

Culturally Competent ◽

Maternal Complications ◽

Patient Centered ◽

Care Services ◽

Nursing Communication ◽

The Family ◽

The nurse is an essential interdisciplinary partner in the delivery of family- and patient-centered palliative care for families faced with perinatal or newborn loss in the labor and delivery (L&D) unit and in the neonatal intensive care unit (NICU). Early identification and referral of the family to perinatal and neonatal palliative care services is paramount. Improving nursing communication with the family, advocating for the family, and providing supportive nursing care, which includes physical and psychological symptom management, are emphasized. The L&D unit is an area in which patients can experience both joy and loss; it is imperative that L&D nurses receive education about palliative care in the event of maternal complications and/or congenital anomalies that lead to the death of a newborn. Principles of essential individualized, compassionate, and culturally competent palliative care interventions are reviewed using patient and family exemplars.

Palliative Care—What, Who and When?

InnovAiT Education and inspiration for general practice ◽

10.1093/innovait/inr154 ◽

2011 ◽

Vol 4 (11) ◽

pp. 624-632

Author(s):

Emma Cope ◽

Patrick Daly

Keyword(s):

Palliative Care ◽

General Practice ◽

Royal College ◽

Palliative Care Team ◽

Care Team ◽

Ageing Population ◽

Care Services ◽

Specialist Services ◽

Palliative care is a speciality which has grown considerably in recent years gaining recognition as its own subspecialty of medicine by the Royal College of Physicians in 1987. GPs have always had a role in providing palliative care, and as our ageing population increases, the number of people living with incurable illnesses will continue to rise. This article aims to provide an understanding of palliative care medicine, the role of the GP in the palliative care team, guidance to help identify those patients who may benefit from palliative care services and when referral to specialist services may be needed. We have also highlighted key documents pertaining to palliative care applicable to general practice.

The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Children ◽

10.3390/children5070097 ◽

2018 ◽

Vol 5 (7) ◽

pp. 97 ◽

Cited By ~ 2

Author(s):

Wei Chin ◽

Tiina Jaaniste ◽

Susan Trethewie

Keyword(s):

Palliative Care ◽

Family System ◽

Pediatric Palliative Care ◽

Future Research ◽

Medical Conditions ◽

Disease Trajectory ◽

Care Services ◽

The Family ◽

Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child’s disease trajectory.

Reflections on palliative sedation

Palliative Care Research and Treatment ◽

10.1177/1178224218823511 ◽

2019 ◽

Vol 12 ◽

pp. 117822421882351 ◽

Cited By ~ 9

Author(s):

Robert Twycross

Keyword(s):

Palliative Care ◽

Deep Sedation ◽

Palliative Sedation ◽

Palliative Care Team ◽

Specific Symptom ◽

Care Services ◽

Continuous Deep Sedation ◽

Continuous Sedation ◽

Intolerable Suffering

‘Palliation sedation’ is a widely used term to describe the intentional administration of sedatives to reduce a dying person’s consciousness to relieve intolerable suffering from refractory symptoms. Research studies generally focus on either ‘continuous sedation until death’ or ‘continuous deep sedation’. It is not always clear whether instances of secondary sedation (i.e. caused by specific symptom management) have been excluded. Continuous deep sedation is controversial because it ends a person’s ‘biographical life’ (the ability to interact meaningfully with other people) and shortens ‘biological life’. Ethically, continuous deep sedation is an exceptional last resort measure. Studies suggest that continuous deep sedation has become ‘normalized’ in some countries and some palliative care services. Of concern is the dissonance between guidelines and practice. At the extreme, there are reports of continuous deep sedation which are best described as non-voluntary (unrequested) euthanasia. Other major concerns relate to its use for solely non-physical (existential) reasons, the under-diagnosis of delirium and its mistreatment, and not appreciating that unresponsiveness is not the same as unconsciousness (unawareness). Ideally, a multiprofessional palliative care team should be involved before proceeding to continuous deep sedation. Good palliative care greatly reduces the need for continuous deep sedation.

Users’ Views of Palliative Care Services: ethical implications

Nursing Ethics ◽

10.1177/096973300000700405 ◽

2000 ◽

Vol 7 (4) ◽

pp. 314-326 ◽

Cited By ~ 17

Author(s):

Simon Woods ◽

Kinta Beaver ◽

Karen Luker

Keyword(s):

Palliative Care ◽

Health Professionals ◽

Ethical Issues ◽

Community Services ◽

Ethical Challenges ◽

Best Interest ◽

Ethical Implications ◽

Care Services ◽

The Family ◽

This article is based on the findings of a study that elicited the views of terminally ill patients ( n = 15), their carers ( n = 10) and bereaved carers ( n = 19) on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some of its positive and negative aspects. Of concern was the reported lack of sensitivity to the role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field.

Referral of Patients with Nonmalignant Chronic Diseases to Specialist Palliative Care: A Study in a Teaching Hospital in Ghana

International Journal of Chronic Diseases ◽

10.1155/2020/8432956 ◽

2020 ◽

Vol 2020 ◽

pp. 1-11

Author(s):

Rasheed Ofosu-Poku ◽

Michael Owusu-Ansah ◽

John Antwi

Keyword(s):

Palliative Care ◽

Chronic Disease ◽

Chronic Diseases ◽

Clinical Care ◽

Palliative Care Service ◽

Palliative Care Team ◽

Care Team ◽

Specialist Palliative Care ◽

Care Services ◽

Ghana’s chronic disease burden is on the rise. An essential aspect of clinical care in chronic disease management is to improve the quality of life of both patients and their families and to help them cope with the experience of life-limiting illness. Specialist palliative care services help reach this objective, especially in the context of complex psychosocial challenges and high symptom burden. It is, therefore, necessary that as many patients as possible get access to available specialist palliative care services. This paper explores the factors influencing referral of patients with nonmalignant chronic diseases for specialist palliative care. A qualitative approach was used to explore these factors from eight (8) participants—four (4) physician specialists and four (4) next of kin of patients with advanced nonmalignant chronic illness. Individual face-to-face interviews were conducted using a semistructured interview guide. Interviews were audio-recorded and data coded, themes and subthemes were identified, and thematic analysis was done. Barriers and motivators identified were categorized as either related to physicians, institution, or family. Barriers to referral were perception of the scope of palliative care, medical paternalism, lack of an institutional referral policy, poor human resource capacity of the palliative care team, and lack of awareness about the existence of specialist palliative care service. Poor economic status of the patient and family, poor prognosis, previous interaction with the palliative care team, and an appreciation of patients’ expectations of the healthcare system were identified as motivators for referral. The palliative care team must therefore increase awareness among other health professionals about their services and facilitate the development and availability of a clear policy to guide and improve referrals.

Palliative care services for Indian migrants in Australia: Experiences of the family of terminally Ill patients

Indian Journal of Palliative Care ◽

10.4103/0973-1075.53589 ◽

2009 ◽

Vol 15 (1) ◽

pp. 76 ◽

Cited By ~ 11

Author(s):

Sujatha Shanmugasundaram ◽

Margaret O′Connor

Keyword(s):

Palliative Care ◽

Terminally Ill ◽

Terminally Ill Patients ◽

Care Services ◽

The Family ◽

Family caregiver satisfaction with early palliative care for advanced non-small cell lung cancer (NSCLC)

Journal of Clinical Oncology ◽

10.1200/jco.2007.25.18_suppl.9027 ◽

2007 ◽

Vol 25 (18_suppl) ◽

pp. 9027-9027

Author(s):

J. Greer ◽

W. Pirl ◽

T. Lynch ◽

J. Billings ◽

V. Jackson ◽

...

Keyword(s):

Palliative Care ◽

Family Caregivers ◽

Palliative Care Team ◽

Satisfaction With Care ◽

Early Palliative Care ◽

Caregiver Satisfaction ◽

Care Services ◽

Oncology Care

9027 Background: Historically, there has been no established role for palliative care in treating ambulatory oncology patients who are not at the end of life, but still struggling with the physical, psychosocial and spiritual aspects of cancer. Integrating palliative care services earlier in oncology care may help alleviate the suffering of patients with advanced cancer and family caregivers. This single-arm pilot study examines caregiver satisfaction with early palliative care services in patients with advanced NSCLC. Methods: Sample included patients within 8 weeks of diagnosis of stage IIIb with effusions or IV NSCLC and their family caregivers. Patients met with the palliative care team at least monthly until the time of hospice referral or death, completing assessments of quality of life (FACT-L) and mood (HADS) at baseline, 3, and 6 months. Caregivers rated their satisfaction with palliative care services using the FAMCARE. To identify predictors of caregiver satisfaction with care, patient scores from the FACT-L and HADS were entered into a linear regression model. Results: Fifty-one patients were enrolled (31 female, mean age=64.5 years), with 73% (n=37) identifying a caregiver who consented to participate. Of the 32 caregivers who completed a follow-up assessment, 84% (n=27) reported average FAMCARE scores in the “very satisfied” to “satisfied” range. Patients with worse physical (β=−.49, p=.003) but better social wellbeing (β=.55, p=.001) on the FACT-L at baseline had caregivers who were more satisfied with palliative care services at follow-up. Patient mood symptoms on the HADS were not related to caregiver satisfaction with care. Conclusions: The majority of family caregivers reported being satisfied with oncology care that included early palliative care. Patients with greater physical disability had caregivers who were more satisfied with care, which may be due to increased contact with the palliative care team. Also, patients who felt more supported by their families at baseline had caregivers who were more satisfied with care. While these data are encouraging, controlled longitudinal studies are needed to determine if these findings are actually the result of early palliative care services. [Table: see text]